So I’m sure many of you have wondered, what’s it like to live with EDS?
It’s a little difficult to describe, because I can never make up my mind whether I should include my secondary conditions. You see, the correllation between some of them and EDS seems to suggest there is some connection – so do I talke about EDS before I developed the secondary conditions, or after?
If I talk about it before, the main thing is that you’re constantly getting injured and the injuries don’t heal all that well. People think you’re terribly clumsy because you get hurt doing perfectly normal things like, oh, walking. At this stage, a lot of us don’t get diagnosed – I sure didn’t! You have to start getting careful about what you do, and listening to your body. In terms of preventing injuries, the best thing I ever did for myself was to take a yoga class. It strengthened my muscles (which helps prevent the kind of injuries we’re prone to) and improved my awareness of where my body was. By the time I had taken ballroom dance classes, if I was paying attention, I had a kind of precision that is quite rare. The only problem is that when I’m not paying attention, I don’t have it! So I still got injured walking around obstacles, bumped into tables and doorways, and the like. You get used to your body aching, because when your muscles have to hold your joints together, they get fatigued. And then there’s all the injuries. They linger, and ache, and create muscle aches because of the way the muscles get jerked around when your joints move out of place. But other than the low-level pain you have all the time, and the frequent injuries, you don’t seem that odd. I always had bruises, scrapes, and cuts from something, but everyone including me assumed it was just because I was a clutz. Yeah, I could do parlor tricks like touch my thumb to my forearm, or touch my foot to my opposite shoulder with ease. But that’s all, really, when you’re dealing with a comparatively mild case of EDS like mine.
When I got older, I started getting secondary conditions. At about 19, I had irritable bowel syndrome (IBS) show up, and suddenly I’d get diarrhea or constipation, or more often gas and cramps, for no apparent reason. I’ve dislocated about 3/4 of the joints in my body over the years. When I was 23, I developed fibromyalgia, leaving me with chronic pain everywhere. Fibro acts as a kind of amplifier of the nervous system. When something hurts, it REALLY hurts, at about three times the rate it did before. I have a hiatal hernia, which is to say that part of my stomach sits above my diaphram, which makes it easy for me to cough or laugh myself into vomiting. It also has given me acid reflux, so that I have to take pills to stop my stomach from producing so much acid and watch what I eat. My annoying bladder leaks all the time. My migraines are at least partially involved with my EDS, because the tension and instability in my neck and shoulders triggers most of them. I faint in the heat, or any time my hydration, salts, or blood sugars dip. I’m supposed to wear a whole pile of braces, but I have trouble with them – either they’re so hard to put on that I dislocate fingers doing it, or they cut into my easily torn skin, or they overheat me and make me more prone to fainting!
Now, I know that sounds like a pile of things gone wrong. And it is. But the thing is, I’m still happy. I can still go to law school, and I pursue my hobbies like spinning yarn, knitting and crochetting, painting, making jewelery, and sewing. Because of my disabilities, I have a wonderful service-dog partner. Because of my disabilities, I met some of my closest friends. I also have an awesome boyfriend, though meeting him wasn’t directly because of my disability (though I’ll tell you guys the story sometime, if you’re curious).
The big thing about living with EDS is that I could wish for a bit more undertanding from the world at large! I HATE being asked by strangers why I wear braces or have a service dog (though I explain the latter because having a service dog makes you kind of a de facto ambassador for service dog programs, not to mention the fundraising for your service dog program that you can do by educating). I’d really love if people wouldn’t assume that the girl with the dog must be blind. It would be great if people would ask me if I need help, or ask how they can help. I love when people open doors for me, even though I know many folks with disabilities don’t like it. I wish there were seats in more places, so I could sit down and take a rest when I’m out shopping. And for crying out loud, if you don’t know me, don’t tell me that you’ll pray I get healed! I was made this way, and I’ll stay this way thankyouverymuch. If you believe in a creator, then you ought to believe that their creations are intended to be the way they were made. I wish that doors everywhere had electronic openers, so that all I have to do is have the dog push a button and I no longer have to rely on the kindness of strangers to get in or risk hurting my joints. It would really be nice if the world was more willing to accomodate me without blatent signs of my need – no operators on our local public transportation would give me the disabled rate before I got my service dog, but nobody denies me that right now. And oh…oh do I hate being stared at. I’m not a show, I’m not a circus freak, I’m just somebody going about her day just like you. I’m tired of buildings that send me in a back or side entrance instead of having an accessible entrance right up front so I can walk in with everyone else. That, more than anything, is what I want – to be treated like everyone else. To have the same opportunities and the same access, to be viewed as just as valuable and just as welcome.
Phew, that got long.
In conclusion…if you want to know about EDS, about living with it, about being disabled…listen. Don’t disregard my voice. Don’t call me ‘too sensitive’. Don’t claim that no one could possible treat me the way I’ve been treated. Don’t deny my personhood, my existance, my life.
If you want to ask questions about anything I wrote here,or living with EDS, or being disabled, or specifics about how my body deals with things, or…well, anything at all, I’m officially opening the floor here. This is a get out of jail free, all questions accepted invitation.
Thank you for your thoughtful — and thorough — explanation of EDS and how it affects your daily life. Those of us without disabilities (or mostly without, as I am) are naturally curious about how those that are more disabled meet their challenges. I agree with you completely that everyone should be treated equally — you should not have to enter a building from the back or side, or find yourself unable to enter at all.
I can also see the problems that the “abled” have in understanding, particularly when diseases like EDS and RA are so frequently “invisible.” And because I’ve been in this position, I also understand how abled people can be curious — and unintentionally insensitive — when they ask questions about your condition and about you that you’d rather not have to answer.
Education is key, here. You’re doing a great job of that. And perhaps, as a lawyer, you’ll be in a position one day to improve the ADA and, at the same time, find ways to better enforce it.
Thanks again for the explanation. You can be sure that I’ll never ask another disabled person “what happened?” I’ll just ask if I can help, if they look like they could use a friendly smile and a hand.
*laugh* You know, of all the things I cannot get my (able-bodied) mother to understand, I think the ‘what happened’ question has to be the most frustrating. When I’ve expressed my annoyance at strangers wanting my medical info, she’s told me that it’s just people expressing concern. Well, frankly, when it comes to strangers, I think it’s more often people expressing their curiousity! When it’s from people I know, especially friends, I can take it with a lot more grace and explain that it’s not a new injury, just a new brace.
I hope that someday, we reach a point where architects think of universal access as the goal, rather than creating beautiful buildings that aren’t accessible and tacking on more disability-friendly entrances on the side or the back. Access can be beautiful! It amazes me how often people only consider stairs as an appropriately beautiful entrance.
Education is one of my biggest goals in writing this blog! Blogging to educate means that I have the option of choosing when I educate, so I can do this when I actually want to, instead of having the timing forced on me by people around me asking questions. Even the comments, I answer when I’m ready, not when someone feels like pouncing on me while I’m waiting for the subway.
Ah, one day…one day, I hope that we can convince people that obeying the ADA is not optional but good for them and society as a whole, and perhaps we’ll be able to create an environment that considers accessibility as a priority instead of as a requirement. Some day, eh?
~Kali
Who wrote this then you or me (except i don’t have a service dog) I have EdS also and you have explained it really well particularly the bit about having to explain it to strangers. Now i want to know how you met your boyfriend! I dislocate my fingers pressing the touch sensitive buttons on the microwave that I will never understand. A really excellent post.
Ah, good, then I did a decent job of explaining what EDS is like, not just what my particular case of it feels like.
Oh how I hate buttons! I usually push them with a knuckle rather than a fingertip to protect my joints. I’m about 1/10th as likely to dislocate something that way, I’ve found. Though people do give me funny looks when I push elevator buttons that way.
I’m still working on getting the dog to a point where he can push elevator buttons. Right now, if he does anything to them, he tries to bite them.. We do well with bigger buttons like the electronic door buttons, because he pushes those with a paw. But anything that requires he push with his nose gets…interesting. He either flicks at my finger with his nose or bites it.
I’ll write up the story of how we met in another post, because it’s…well, it’s a bit of a long story, and a pretty long series of coincidents!
~Kali
Perhaps I’m missing the point–but shouldn’t braces that are supposed to help your joints not get dislocated (assuming that’s the purpose they serve) not dislocate your joints in the process of putting them on? That seems like very poor design.
My brother doesn’t have EDS, but he messed up both his knees when he was young. So he wears these really long braces that provide the support he needs, but sometimes he can’t get them on, because putting them on causes more pain than he can endure at the moment.
It seems the people who are designed these braces need to collaborate more with the people who use them. Like instead of working on theoretical models they should actually apply their design concepts to people.
Well, the thing is, they don’t dislocate the joints they’re intended to protect. They dislocate other joints. Putting on my knee braces gives me problems with my fingers, wrists, elbows, and shoulders.
I’m hoping to get a set of braces that can be strapped on instead of pulled on, but to do that I have to get back to my physiatrist, and it always takes ages to get in to see him. *sigh* One more call to make tomorrow…
I understood that they were braces to protect other joints, but it seems like a bad match of assistive devices. Straps might help, but I’ve seen my brother use braces for his knees that had straps. The brace still needed to be pulled on, and then the straps had to be pulled quite tight to offer sufficient support. There may be other kinds, too, but there’s likely still that “pull tight” step.
Perhaps something that could be slid on (versus pulled on) and then had an automatic tightener would be better, kind of like the automatic blood pressure cuffs, except something that would stay.
I’m not an engineer or a designer, nor am I familiar enough (despite your wonderful post!) with your experiences to know just what you need, but our product design, manufacture, and distribution capabilities are sophisticated enough to deliver what you need. It really bothers me that utilizing those capabilities for assistive devices isn’t a sufficiently high enough priority to make it happen.
My current brace is a pull on then strap in. The strap tight isn’t the problem, it’s the pull on that gets me. What I need is a brace that just straps on. I know they exist, but they tend to be substantially more expensive than my current braces, or the iteration of braces before them (which were cheaper yet).
How did you feel when you first got diagnosed with EDS? What was it like adjusting to something that had such wide ramifications for how you would live your life?
These are also somewhat selfish questions I confess, since I find myself going through the same thing 🙂
Well…
The first response was this huge rush of relief. I found a doctor who was actually listening to me, I had a final complete answer for almost everything going wrong with my body, and I had someone to start coordinating my care and figuring out what I needed so I didn’t have to figure everything out!
Then it started hitting me. Oh my god. This is…forever. This is as good as it gets. I won’t be getting back to skiing or dancing or swordfighting or…well, any number of things I’d already had to give up because they hurt too much. I knew then that it was going to be one brace after another, with a high likelihood that I’d eventually need a wheelchair, and you’d better believe I didn’t like that one bit. I had a pretty big flip-out over the possibility of dying young, and I’m afraid I scarred the boyfriend pretty good. He still gets kind of flinchy about the topic of death.
After a little while, I started realizing that having EDS really just meant I had a name and a reason for all that had happened before, and some clues on preventing similar things in the future. It meant that I could read journals and articles and websites and find hints on keeping healthy that were actually tailored to the condition I’m working with. Same body, but more ideas on what I can do (and what my doctors can do) to help me have the best quality of life.
Which is not to say that every day is now in that latter camp. I still have the why-me days, and the mopey things-I’ve-lost days, and the days where knowing I have this scares me. But 16 months out from my diagnosis, I think I’ve recovered my equalibrium.
Wow. This post was beautifully resonant and hopeful (and even if it was from two years ago, it’s so beautiful that I want to reply anyhow). I’m beginning to go through that third phase you describe (that level-ing out, stabilizing process that comes after 1. the initial relief of diagnosis and 2. the pessimistic freak-out as you look through the trajectory of the years) and I have to say, I am glad to see that you are in a good place. Equilibrium. Balance. Stability. What lovely words for us EDSers. I actually often feel that the condition we have that causes our bodies to wobble, to shift gratingly, and to be painfully displaced often does the same things to our emotions. I’m hoping that with the new use of some exercises to stabilize my joints, I’m now capable of working on doing the same thing with strengthening and stabilizing my outlook.
I, too, would love to hear a bit more about your relationship with your boyfriend. I was in a serious relationship with a man I thought I’d marry, but unfortunately my health issues were too much for him to handle (which, considering some of his past experiences, were understandable), and he, too, ended up scarred as he went with me through the diagnosis process–a rather painful 7 months we never really fully recovered from. Ultimately, I know that I need someone who is able to handle the more-than-prospect of physical decline, but it sounds like what you have in your relationship is a healthy balance in supporting each other–one I’d like to achieve as well. (I’ve never been one to enjoy being a “taker” in relationships.) On the off-chance that anyone else has felt this sort of pain and strain on a relationship due to health related issues, I though I’d steer them in the direction of a new resource I’ve come across. (Not a plug.)
I’ve started reading Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties, and I have found this to be really a great resource for outlooks on how we, young people in the prime of our lives, can adapt without feeling like we have stopped living. It has a good section on relationships.
Thank you so much for this blog. It is certainly one I will look at in the future for advice, support, and just to know that there is someone out there going through the same thing as myself. It sounds like you have got a great network of people who understand your condition (I do not, as of yet), but all the same, if you ever do feel a need to reach out, do know that I am here and love to listen. 🙂
I hope you have an excellent day.
–Melissa
Welcome, Melissa!
The boyfriend and I are now engaged. He’s a stunningly prosaic guy who takes great joy in being able to make me feel better. That means he’s more than happy to help me set joints, stretch and massage cramping muscles, etc. He’s good enough about it that he’s rarely even cranky when I have to wake him up in the middle of the night to get something for me, or fix a joint or whatever. Admittedly, he gets a little frustrated if I have to wake him up several times in one night, or if I’m waking him up for a trip to the ER, but it would take a saint to stay perfectly unruffled in those situations.
Our first year definitely had some ups and downs. My mental health medications weren’t quite balanced right, my state of disability and constant pain was a relatively new thing (started circa 7 months before we met), and I didn’t get diagnosed with EDS until we’d been together for nearly a year. Most of the hard stuff was that it hurt him to see me upset, or in pain, or frustrated, or crushed, and I spent quite my share of time in those states. It took a while for me to adjust, both to the secondary pain condition and to having my diagnosis. The fiance was absolutely a rock for me while I was struggling with that. We had some nights where I’d go on a crying jag and that would start him crying, and it was very upsetting for him to listen to me talking about things like the fact that one branch of my family dies relatively young and I could, too. In addition to the fiance, I had a very good shrink at the time, and I really needed both. If I hadn’t had Marcy to lean on, I might very well have burned out the fiance.
A big part of why our relationship works is because he’s a very generous, kind person. He’s steady and easy-going, almost an exact opposite of my relatively mercurial, fiery temperament, but that’s part of why things work. A touch of opposites attract, and a bigger dollop of differences complementing each other. I deal with all of the confrontational stuff in our lives (dealing with the landlord, arguing with stores about refunds, etc etc) and most of the planning, he does the physical stuff. We are each able to fill in for the other’s weaknesses.
As far as dealing with the very real decline in my health over the last 4 years, well, it is occasionally awkward, but for the most part, the fiance just kind of goes with the flow. I certainly envy him his ability to just accept things! I sometimes feel like I am doing all the taking in our relationship, or at least more than my ‘share’ of it, but he is always quick to point out the things I do for him, like edit job applications and push him to take care of his health and so on. To a certain extent, it doesn’t matter if I think I am taking more than I am giving, because he does not believe I am.
Live Disrupted is definitely a good book. For me, it was not as useful as I was hoping, though. Her disability hit her so much younger that in a lot of ways, I couldn’t relate when I first read it…ooh, I think summer or fall of 2008. Her experience and mine were just very different in some ways. I was adjusting to going from a relatively healthy (albeit easily injured) adult to a very sick adult, where she had been sick basically all her life. I actually recently came across it and was thinking about re-reading it – maybe I will after I finish the fantasy series I’m reading right now.
Anyhow, please do feel free to drop me a comment here or an email (my email’s in the second to last of the little boxes to the right of the screen here)
All the best,
~Kali
I was diagnosed with Severe Fibromyalgia when I was 13, after having widespread body/joint pain since age 7. Though it seemed very rare for a child so young to have this, and they couldn’t explain my hips popping out of the sockets, that was the best answer the doctors could come up with to explain my pain. I took this diagnosis and researched on my own, and stopped seeing doctors. What was the point? I knew what I had, and it was un-curable so why bother more poking and prodding? I have spent almost the last 20 years thinking I had fibromyalgia. Just 2 months ago, I went to a new doctor. I came to find that the original diagnosis was not the case. As it turns out I have had EDS Type III all along. Its a very strange feeling to live for 20 years identifying with one disease then suddenly finding out you have something totally different. When you get a diagnosis- you learn to identify with it. It becomes a part of you. Now all of the sudden I have this new disease, though it is much more fitting to my symptoms, I sort of don’t know how to process it. Though I am in exactly the same boat as before- incurable disease, will continue to get worse, spend my whole life in pain, etc….somehow this is a very foreign feeling. Its almost as if my joints feel looser now that I know they actually are loose! I am in more pain now then ever before. My legs are locking up more often and I am tripping and stumbling more. I notice the noise of my joints cracking more. Its as if I am extra aware of just how uncomfortable I am on a day to day basis- I am constantly noticing just how much of a hard time I really have getting around! Any advice or similar experiences? I am having kind of a hard time with this. I still think I have the fibromyalgia as well, though EDS type III explains every symptom I have…maybe the fibro is just such a part of me now that I refuse to let it go.
My experience was that I got diagnosed because things got worse for other reasons. That may very well be your case – you may be hitting an age where the collected strain/trauma to your joints has just added up to significant pain and dysfunction.
There are three things I would recommend at this point, assuming money isn’t an issue. First, see a physiatrist – that’s a physical rehabilitation specialist. Ask if the doc is experienced with connective tissue disorders when you book your appointment; ideally, you want someone who has that experience. They should be able to tell you what is and what isn’t normal, and what should be done about it. The physiatrist should be able to recommend braces for you – that’s my second recommendation, get your bad joints braced. You should see a proper orthotist for them, not just get random off-the-shelf stuff. We don’t heal up, so we need things that are custom, where most people are going to wear the brace for a few weeks or months and then be done with it. The third thing is see a physical therapist (PT) who is experienced with or knowledgeable about EDS. I was lucky and found a guy who worked well with my body before we knew what I had, and he did research into treatments for me once I had the diagnosis. You want the PT to help you re-build your muscles to optimally support your joints. Having the muscles built up properly, and doing daily exercise to keep them built up properly, will support and stabilize your joints. I really suggest a PT to at least start the process, because it is pretty easy to get yourself injured or imbalanced with improper technique or bad combinations of exercises. I should know, I did that to my knee when I was 15. The inner thigh muscles weren’t strong enough compared to the quads, so my kneecap rotated about 20 degrees, which was enough to make a permanent mess of the cartilage under the kneecap.
You might also find a walking aid helpful. I used crutches for a while before I got my service dog, and they really helped with my knee and ankle pain. I also tripped less, though I’m not entirely certain why. The brand I bought was Walkeasy, and I recommend them – they’re much lighter weight than the standard issue ones. As I’m quite short, I was able to get the youth size ones, which are lighter yet. They were a great investment for me. If you can’t afford crutches, you might try a pair of canes. I strongly suggest an offset cane with a soft foam handle – EDS hands are not happy gripping a hard wooden handle. http://www.amazon.com/Ez2care-Classic-Handle-Strap-Black/dp/B009OEAYL8/ref=sr_1_11?s=hpc&ie=UTF8&qid=1401769919&sr=1-11 that style is the right sort. If you poke around, you can find them in all sorts of pretty colors, but they don’t get much cheaper than the one I linked. I know for some people who have more shoulder or wrist problems than leg joint problems, crutches and canes are not always a good choice. And I do know that for some people, a cane is just one more think to trip on. But for me, it was a big help during a couple of very hard years. I used canes for about 8 months and then crutches for just about a year, and then I got the service dog. I don’t lean on him as heavily as I did on my crutches, but his forward motion helps me walk more comfortably and he helps me balance. I don’t know if a service dog would be helpful for you; that’s something where you have to look at what the dogs can do and look at what you have to do for the dog and decide A) whether a dog would be more help or hinderance and B) whether you actually want to spend every moment of your life with a creature who will become your furrier self. It was a good choice for me, and I am pretty sure I’ll keep working with service dogs for a long time to come.
Do feel free to email me, if you want more details about my dog and the service dog school! I do apologize for not being remotely prompt at answering this – I can only say that I graduated from law school, my family visited from across the country to celebrate my graduation, and then I got a terrible sinus infection. Things have been just a shade too ‘interesting’ around here to get anything done.
I would like to know more about your service dog and where you got the training? I have been working with a dog I got trying to do it myself getting her socialized. Now she needs service dog training and I have no idea where to start.
Thanks, Diana
Sent from my iPad
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Hi Diana,
So, there are 3 basic routes to getting a service dog. The most common route is to work with a service dog school. You can also do it entirely on your own, which is called ‘owner-training’, and someone who does that is an ‘owner-trainer’. The third route is to find a private trainer – this is often the most expensive route, and unfortunately is the most prone to fraud. There are advantages to each route. For me, well, I don’t have the wherewithal to deal with a puppy, and I’m not sure I could pick a rescue dog that had the mental, emotional, and physical requirements of the task, not to mention I don’t have the space or energy for a dog who washes out in addition to my service dog. So I went with a school. If you already have a dog you know you want to work with, there are almost no schools who accept dogs chosen by the eventual partner, so you are looking at either training for yourself or hiring a private trainer. For some people who have combinations of disabilities, schools may not be an option – I know of someone who has visual, auditory, and physical disabilities, so she trained her own dog, and I’ve known of people who were both blind and physically disabled who owner trained. Schools tend to be focused on producing dogs that do one thing – health alerts, physical aid, dogs for the blind, hearing dogs, etc. So if you have multiple needs, a school just may not be able to help.
So Hudson was raised by his service dog school. I didn’t meet him until he was 2 years old and fully trained. So our process won’t help much because, well, we didn’t do it that way. We did, however, spend a bit of time watching part of a series of DVDs that I’ve heard is excellent – Barbara Handelman’s “Clicker Train Your Own Assistance Dog”, which you can find here http://store.clickertraining.com/clicker-train-your-own-assistance-dog-barbara-handelman.html, among other places. Even at the service dog school, we watched about 45 minutes of it, several different segments, because it’s a really good place to start. There’s a more basic dvd that just covers how to do clicker training called ‘Click ‘n Go’, which I bought from dogwise.com 5 years ago, but they don’t seem to carry it anymore – it may have gone out of ‘print’.
My good friend Sharon, who used to blog at http://www.aftergadget.wordpress.com and now blogs at http://www.sharonwachsler.com, trained two service dogs and was in the process of training a third when she went through some major (positive!) health changes and no longer needed a service dog. She’d be a great person to contact, and she’s pretty connected to the online clicker training community. IMO, clicker training is the ONLY way to train a service dog. It encourages them to think and problem-solve, and that’s exactly what you want in a service dog. It takes longer than ‘traditional’ obedience training, but it’s because the dogs are learning how you want them to think, which means that once they ‘get’ things, they can learn to apply them in situations you never imagined training them in (because really, who trains a service dog for things like ‘walking through my Graduation’?)
If you look up the Assistance Dog Blog Carnival, which started on After Gadget, you’ll find that some of the participants are owner-trainers, and I bet they could help you more than I can. You can find all of the past Carnivals here: http://aftergadget.wordpress.com/about-the-assistance-dog-blog-carnival/.
I hope that is helpful! Sorry I can’t direct you more specifically.
In some ways, I find your posts about disability as a general phenomenon to be more useful than those that educate about EDS. Maybe because I don’t have EDS, yet you and I have a wide commonality of experience. There isn’t even a name for what I have, call it complications of something pretty rare that was probably treated improperly by surgery … yeah. Try explaining that one.
Here’s a recent experience I thought I’d share with you. I went to lunch in a small-town restaurant while on a drive in the country with my husband. Seeing me approach with a walker, the hostess ran to open the front door and hold it for me (I’m one of those that prefers not, but in the case of a restaurant, I’ll accept it) and then called me “sweetie” several times. She called my husband, who is a senior citizen, “dear.” Could this possibly be more patronizing? I am pretty sure she doesn’t call every customer “sweetie” or “dear.”
You have to laugh though. Otherwise, you’d be permanently angry or discouraged.
I didn’t confront this hostess because what would be the point? I mean, this was a REALLY SMALL TOWN. I start with my immediate circle first, and even then, I pick my battles carefully.
Well, I’d be willing to bet that if you said ‘bad surgery’ and I said ‘bad joints’, we’d get pretty similar numbers of people giving us funny luck.
Oh, I hear you about the patronizing endearments. I get them from strangers aaaaaalll the time. And when they’re not directed at me, they’re directed at my dog. It’s enough to make me want to pull my hair out sometimes.
I remind myself, when I can remember to, that when I worked in a restaurant, I actually did work with someone who called almost all of the customers ‘dear’. Karen was an older lady, and when she was taking orders, I think she must have asked 2/3 or more of her customers, “What would you like, dear?” Five days a week, Karen always said ‘dear’. And those of us among the coworkers that she liked, she called ‘dear’ as well.
I was going to say that for some people working in the service industry “sweetie” and “dear” are terms they use with all or most customers. The endearments are intended to be welcoming, not derogatory.
But, there certainly are people who use them to marginalize others.
I really enjoy all your posts. I found you through Naamah Darling on LJ, when the Hudson fundraiser was going on. I am an advocate for service dogs, not only because they can contribute so much to a person’s independence, but also because dogs love to have a job. It’s just a win-win.
My father got around on crutches for most of my life, due to what was “diagnosed” at the time (1970s) as Rheumatoid Arthritis, but what I now believe was Fibromyalgia. I got so used to looking for accessibility that I do it automatically now.
My best friend is mostly deaf, so a new stage of my education was to learn to always be attentive to lip readers – including not yelling or otherwise talking funny.
My husband has Ankylosing Spondylosis, which is controlled (pretty darn completely) by medication, but which we both know may well cripple him in time. Who knows what more I might learn on that day?
I like to think I’m pretty savvy, I like to think I am respectful when dealing with people with disability, but I’m not so proud as to think I can’t learn more, and so I really, really enjoy all your posts.
Me, I just have Sensory Integration Dysfunction, which falls under the hard-to-explain-and-folks-don’t-get-it-anyway umbrella.
Naamah really is a lovely person, isn’t she? About 2/3 of what I raised came from people connecting to me from her journal.
Sounds like you do have quite a bit of experience, both first-hand and second-hand from the people in your life.
Sensory Integration Dysfunction and similar conditions can definitely be very hard to explain. I’m trying to remember the explanation that seemed to make sense to me, but as I understand it, all of your sensory pick-up kind of gets mixed up into a heap and you have to try to pick things out of it to make sense of them. Which is to say, especially things like hearing someone speak can require a huge amount of concentration. Sound about right?
Do you mind when people comment on your dog – like mentioning how cute he is or whatever? I always comment on dogs (I love dogs) and never think about whether or not I’m invading someone’s space by doing it! I never ask has one, just usually say something like “You have a beautiful dog.”
The vast majority of the time, no, I don’t mind. He’s a handsome pooch and I know he gets his admirers.
When I’m particularly tired, it annoys me because I’m tired and I don’t want to engage with people, and if someone comments on my dog then being polite demands I respond. But I think that has more to do with the fact that I’m fatigued than it does with people reacting to Hudson.
I struggle sometimes with the fact that I find it irksome at times, and I’m not entirely sure how fair that is to the people I’m reacting to. I am certain that it’s fair for me to not want people asking what my service dog does, I don’t know that it’s fair for me to be put off by people wanting me to interact with them about the fact that my dog exists.
I’m not sure if what I have said makes sense, and I am certain that it is not a clear yes-or-no answer, and for that I apologize.
I have EDS anda service animal, as well. People comment on/interact with her so much that my husband and I find ourselves talking about service dogs on most of our dates, not only to strangers, but each other.
When I’m tired, I sometimes wish Sallie was just a tad ugly or unfriendly. Poor darling would have a fit, if she knew. She not only prides herself in her appearance, but advocates for me by smiling and turning the “medical alert” side of her uniform towards those who ask questions.
Still, I know where you’re coming from:
It’s lovely when you’re feeling well and horrid when you’re not.
I have a question for you… just curious if this is anything like you have experienced. I am currently going to the doctor for so many reasons. I finally saw a rheumatologist and he is sending me to have genetic testing for EDS and Marfans. However, secondary conditions such as possible endometriosis & IBS (severe abdominal cramping) and headaches at the base of my skull (seeing a neurologist) are keeping me busy at the doctors office. I too have thought that this all must be connected! My OBGYN decided that I should try an Inter-Uterin Device because regular birth control pills have given me blood clots. I do not think this is helping. My neurologist thinks my headaches are from muscle pain and tension in my neck and shoulders. (My Rheumatologist has already diagnosed me with hypermobility Syndrome and Fibromyalgia) In the past I was told by my eye doctor that the flashes of light in my vision were due to the vitreous detattaching from the retina, which is held together by a connective tissue. I also have a chiari 1 malformation, diagnosed by the neurologist when I was there.
I am partially relieved to hear you talk about symptoms that seem to be connected with your EDS, and partially scared that the genetic testing will reveal that I have it. I so frustrated in and out of pain and my doctors seem so disorganized. 😦 If there is anything you can recommend any reading, physical therapy techniques, or pain medication that has helped you I would be forever grateful.
Thank you for your article and your willingness to help others!
Bit of a tall order, but let me try going through this one piece at a time.
First off, is your rheumy sending you for genetic testing or is he sending you to a geneticist? Different matters altogether. I hope he’s sending you to a geneticist. Most types of EDS and Marfans can’t be discovered via tests, they have to be found by clinical signs – that is, someone has to ask you a lot of questions about your family, your health, and see how you move and how far you hyperextend and whatnot. If he’s just sending you for genetic testing, you aren’t being evaluated for those.
I get headaches at the base of my skull as well, which for me are almost definitely secondary to EDS. (the car accidents I’ve been in may also be part of the picture) It may be related to your chiari, or it may be related to cranio-cervical instability and assorted hypermobility that leads to muscles winding up too tight to try to stabilize things, which causes headaches. I find that the thing that most helps is a combination of traction and cervical release massage, with ice on me during the traction. Also, I recommend the Trigger Point Therapy Workbook. You can get it for about $15 on amazon.com, as I recall. People with hypermobility tend to build up trigger points – rather extreme knots in the muscle – that can cause pain in all kinds of places.
I have pretty bad IBS, with very mean cramps. That can definitely be related. If cramping is your main problem, ask your GP or rheumy if you can have dicyclomine or hyoscimine (think I may have misspelled the latter). Both help with abdominal cramping.
I suspect I may have endo – I haven’t heard of that being related to EDS. I haven’t had a chance to get that particular problem inspected yet. It’s on the to-do list. I can’t speak to the IUD as I’ve never had one, though my understanding is that a hormonal IUD can help with the endo without as high a risk of blood clots because it puts a lot less hormone in your bloodstream.
Flashes of light due to vitreous detachment? Hmm. I don’t know anything about vitreous detachment, but a quick read of why it happens makes it sound like it could definitely be part of a connective tissue disorder.
In terms of pain medications, I have found lyrica and cymbalta both help with the pain, but I still require an opioid to get through the day. Deep tissue or trigger point massage could both help you, but clear the idea with your doctor before you do it and make sure you tell the massage therapist that you’re hypermobile!
If you have trouble with hypermobility, I suggest looking up a physiatrist. They’re physical rehab doctors, so they do things like bracing and stabilization exercises that can be very, very valuable when dealing with hypermobile joints.
Having a geneticist on your medical team can help a lot in terms of making things more organized, especially if you can find an EDS and/or Marfans specialist. I suggest registering with the Ehlers Danlos National Foundation and looking through their lists of doctors to find a knowledgable one. If you tell me what part of the country you’re in, I may be able to suggest doctors I know of through the other people with EDS that I know.
Chiari malformations have a higher incidence among those with EDS-hypermobility type. I’ll be going for genetic testing and to be tested for a chiari malformation. I was diagnosed with all the same problems and being stubborn I refused to believe they weren’t related. Most people in my family have varying EDS related difficulties, however I present with the most degeneration because of my physical activities.
Interestingly enough, although I wanted to keep my sister from being poked and prodded like I was, she would have been the key because she has blue sclera.
I’m going through that process too Angela. I’ve already been to the neurologist who conducted an EMG, which came back normal, just a slight delay from my toes. My neck and back problems are horrible. My PCP sent me to Physical Therapy. That’s how I found out that my arm and leg joints are hyper mobile. Anti-inflammatory meds and muscle relaxers aren’t even touching the pain I experience from muscle spasms that I live with every day. My physical therapist tried teaching many yoga stretches that never reach my back/neck because I’m feeling all of the stretch in my arms or legs. Just going to the grocery store is excruciating. The muscle fatigue in my legs is the worst. The neurologist put me on Requip for restless leg syndrome. It works when I’m relatively inactive during the day, but if I do the slightest but of over exertion, I’m miserable all night long. The fatigue is painful in itself, not even accounting for the spasms. I get horrible headaches and migraines at the base of my skull that Imitrex doesn’t help.
As a kid, I was one of those super flexible pretzel kids. I could put my legs behind my head and do the splits easily. As I’ve gotten older (I’m 36 now) I’ve gotten heavier and I can’t do the severe stretches anymore. I still can bend down without bending my knees and put my palms flat on the ground. When I stand up straight, my knees look like they are bending backwards. My arms, well… They were what tipped off the physical therapist. She kept having to tell me to “fix my arms” because they naturally flip outward.
I have struggled with depression since I was in my late teens, and anxiety since I was 21. I have tried every ant-depressant out there. The only one that remotely works for me is Effexor XR. My doctor doesn’t believe that I’m in pain because he believes the Effexor should be helping diminish it because it is a norepinephrine blocker.
I have an appointment with a rheumatologist on September 16th. I don’t know what I’m expecting, because I’m used to doctors not listening to me. I truly believe I have EDS, all of my symptoms fit the bill. I’m almost hoping that I do get a diagnosis so that my pain issues are taken seriously. It seems like every year, my health declines further and further. If I could sleep away the days, I would. Being at this stage is so frustrating. I know how you (Kali and Angela) feel/felt at this stage.
Well, I finally got my EDS diagnosis from genetics and rheumatologist. I feel like I’m falling apart. My tailbone, I have found, is hypermobile. I also have bone spurs on my tailbone. When I sit, I feel like I’m sitting on a porcupine. I’ve had my diagnosis for a couple years now. I had to have an echocardiogram, that came back normal. So my diagnosis is 100% hypermobile. The degenerative disc syndrome in my back is awful. My PCP referred me to Bariatrics because I’ve put on so much weight. I have to wear braces on my ankles anytime I go outside. I’ve been approved for gastric sleeve weight loss surgery pending losing 13 pounds. I’ve lost 10 so far. It’s going slow because I’m so scared of hurting myself which happens anytime I exercise. My knees have started up. The inflammation is horrible, and I get really bad edema in my left foot and left hand. I hope to God that I can get the Bariatric surgery. It will help me lose this excess weight so that hopefully, I’ll be taking a lot of stress off of my joints. I am in therapy and see a psychiatrist. They’re helping. I’m finally regulated on a winning psych therapy med regimen. Bad side to that, I’m still in a lot of pain and I’m treated like a drug addict. It is beyond frustrating.
I’m sorry I didn’t respond to this sooner – someone turned up the difficulty level on my life, and it has been hard to get anything done!
Ouch, sitting on a porcupine sounds miserable!
Regarding the bariatric surgery, please be aware that as someone with EDS, you’re at a higher risk of side effects like adhesions and outright failure. The primary cause of failure in bariatric surgery is the stomach stretching back out to its former proportions. I’m sure you can see where having stretchy tissues makes this more likely, unfortunately. I’m not telling you it definitely won’t work, but I am telling you that the odds of failure are higher for us and you would have to adhere to the tiny portion sizes with greater faithfulness than the average patient. I hope you have also looked into the 5- and 10-year rates of success with bariatric surgery; they are not encouraging, but they often stick you with permanent problems with malnutrition even when they fail.
As far as exercise, what have you been trying? I’m not sure if you are aware, but the most highly recommended type of exercise for people with EDS is swimming. After that is low and no impact cardio. Personally, I have a Gazelle machine I love that is my primary cardio exercise. It does not bother my knees or ankles because I don’t pick my feet up at all – they glide on what are essentially very fancy swings. Some people find ellipticals very helpful, but I am a special clutz and I manage to hurt my ankles and knees on them because the size of my steps isn’t regular enough – some too long, some too short. (I also hurt myself swimming, which is why I do not do that). Recumbent bikes are also commonly recommended, though of course you will have to see if that plays well with your knees.
I hope that late as this message is, it is not finding you too late to be of assistance.
I have done a lot of research on the Bariatric surgery. They want to do the sleeve Gastrectomy instead of the bypass mainly because of the EDS. There are still complications that can occur. I know that I’ll be on a myriad of vitamins and supplements for the rest of my life. I’m really hoping the surgery takes a lot of the pressure off of my tailbone. It hurts so bad! I cleaned my living room top to bottom and not only is my tailbone aggravated, but my lower back, knees, and hips are now screaming at me. I’ve tried several work out methods including just walking and it doesn’t really matter, I’m in writhing pain. I trip over my own two feet. Swimming makes my joints even more lax and my knees pop. I’ve tried the recumbent bike and that puts pressure on my tailbone. I’m going to try walking again when the weather warms up a little more. I go to the nutritionist on March 31st to see if I’m “approved” for the surgery. I know that it’s going to be a long journey, but I’m willing to try anything. I asked my pain clinic doctor and an orthopedic surgeon if there’s anything that they can do for my tailbone and was told no by both. I’m staying as strong as I can for my girls. I just hope something can reduce the pressure.
~Melissa Schiffer
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There are 2 exercise machines I think might be worth trying for you. Both of them are ways to do lower/no impact walking type exercise. The first is the one I use, the Gazelle. It’s inexpensive (the basic one was $110 or so last time I looked), and the motion is to me quite natural and a lot like walking except that there is no time my foot lands on the ‘ground’ because it moves with me. The videos all show them running in this leaned-forward position, but those of us who are not in super shape just walk standing upright. Each side moves freely, so there is no problem if your gait is inconsistent.
The second one is the Nordic Track. Your feet move in a sliding motion forward and back. You do have to be careful of hyperextending your knees, and the learning curve is a little steeper than for the Gazelle. For me, using the hip strap nice and snug and having the support set to the right height was very important. These machines are a good bit more expensive than the Gazelle, but it has been a long time since I looked so I don’t know how much.
Regarding taking pressure off your tailbone, has anyone mentioned to you that there are seat cushions designed to do that? You can find them on the regular market and as wheelchair seat cushions. They can make a world of difference. Generally speaking, these sorts of cushions have a cut-out where your tailbone would rest so that the rest of your butt takes the weight instead. (And honestly, if no one has suggested this to you, I am more than a little appalled, as this would offer instant relief.)
The other thing I wonder is what your posture is like. Good posture shouldn’t put much pressure on your tailbone, but it is very easy to rock the pelvis back, and then all the weight that should be on your sit bones ends up on your tailbone. Doing that is especially common in people who are carrying extra weight. If you can have someone take a picture of you sitting on a backless stool or chair or bench in as close to your normal posture as possible, I could probably tell you if you are doing that.
One other thing: pushing your body until it screams does no one any good. You need to work on pacing yourself and asking for help. Yes, that means you wouldn’t do the living room from top to bottom all in one go. Break it down into smaller pieces – start with 15 minutes at a time – and take a breather in between each piece to rest a moment and listen to your body. If it says it needs a break, give it a break. It if says it is done, let it be done and come back to this after a good long rest, maybe the next day. Doing things in frequent but short bursts instead of one giant sweep of cleaning is much kinder to your body. If a lot of what you are cleaning up is other people’s mess, it is time to make them take more responsibility for it. I would also bet that your family would rather have quality time with a you who isn’t in agony than an immaculate house.
Thank you for the recommendations on the machines. It sounds like the gazelle will work the best for me.
No one has ever recommended the cushion to me. I’m on a mission to find one now. My posture, as far as the pain clinic doc, is correct in general. It’s when the pain is out of control do I sit “funny.”
Wish I could get the other humans in this house to help me clean. The other “adult” works, and he believes that is his job. I’m “home all day” and should be able to keep house immaculate. It’s maddening. I have a 14 year old and it takes a lot of grief to get her to load the dishwasher. My youngest is 7… she helps where she can, but a seven year old’s ideology on “clean” obviously isn’t really clean. She can’t even keep her room straightened up.
I know I need to figure something out. I keep telling them that if they don’t help me, I could end up in a wheelchair. I think that they think I’m joking.
The type of cushion is generally called a coccyx cushion. Some have a cut-out under your tailbone, some have a different material there, and they start around $30 and go up to a couple hundred. I understand from friends who are wheelchair users that the gel style ones are well-liked. If you combine your existing good posture with one of those cushions, it should take a lot of pressure off your tailbone.
The type of cushion is generally called a coccyx cushion. Some have a cut-out under your tailbone, some have a different material there, and they start around $30 and go up to a couple hundred. I understand from friends who are wheelchair users that the gel style ones are well-liked. If you combine your existing good posture with one of those cushions, it should take a lot of pressure off your tailbone.
It stinks that you’re having trouble getting support from your family on this stuff. Would taking your partner to the doctor with you and having the doctor explain that continuing this way will permanently damage your body help? I know that for some folks it does. As far as the kids, it’s hard to start as late as your teen for sure – the younger you start, the more likely it is to work. I do find that with some people, especially kids, you have to be very specific about what you want them to do. If I tell my other half to straighten up the kitchen, it just doesn’t occur to him sometimes that putting things away isn’t enough, he also has to clean the counters, and to properly clean the counters he has to move each item on the counter and clean under and around where it went, then replace it and do the rest. I know it takes longer, but supervising and pointing out missed spots now means you can just have her do it herself later. (Another bonus – you can stay in whatever position is comfortable for you while she does this instead of doing the stooping and bending and reaching and whatnot yourself.) This is something I really wish my parents had done with me, because I had to learn to be neat and to really get stuff clean when I became an adult. My parents were too busy to do that kind of supervision when I was a kid, and really only tried to get us to help when we were too old for it to become a normal habit.
The Flylady is a popular cleaning system among folks with disabilities because it helps break it down into pieces and promotes pacing. Unfuck Your Habitat is another one I’ve heard about but not tried myself.
Really…Really??? I would love for people to open doors, I would appreciated everyone thoughtful and observant enough to help. They can call me Sugar, Sweetie, Honeypie, …I don’t care! I was diagnosed with EDS III 2 year ago and am in such daily pain that I didn’t realize I had broken my finger for 10 days. I only sleep 4 hrs at night and my muscles are so fatigued that they spasm and cramp all day and night as soon as I stop moving. I injure myself daily–just changes where the injury is. I daily strain my hands doing basic living activies and the next day they are swollen.
What makes me want to scream is people thinking that because I look healthy, I am healthy; when people in my own family question my level of pain (until I show them my swollen hands and let them feel my spasming legs.) When I have doctors that don’t read beyond the paragraph description they get for EDS and are dismissive of my issues. Sure they will give me what ever pain meds I want but pain is my warning sign of injury. I need real help!
So go ahead and call me Sweetie (since you don’t know my name) and go ahead and ask about what happened when you see my braces. It makes me feel good that there are people out there that are thoughtful, and their curiousity gives me an opportunity to educate about EDS. For from what I see, just in the public, there are a lot more undiagnosed connective tissue disorders out there. Maybe, just maybe, by talking about it and creating awareness, we can help someone else. I sure wish someone, even a stranger, had reconized what I had and given me a heads up about it. It sure would have saved me a ton of money chasing the diagnosis and I sure wouldn’t have taken that martial arts class that did irreparable damage.
Wow! You sound very similar to me!! I am 23 living with EDS, however I have not seen a doctor for it since I was 16. Within the past 4 years, I have stared experiencing pain related to my EDS. I do not have health insurance so I have been trying to accommodate it on my own. However, over the counter orthodics and knee braces aren’t cutting it anymore. I can’t even walk without at least 3 different braces on my feet. Therefore, if you have any suggestions or recommendations for me, I would be so appreciative!! For example, where did you start with your doctors visits after being diagnosed? Also, are you familiar with any help from the state? I’m currently enrolled in my masters program for early childhood education at the University of Central Florida. It sounds as though you’ve gone through the proper steps to address your EDS and I have no idea where to go (trying to keep the costs down as well). So anything would be extremely helpful!! Thanks 🙂
My main doctor for managing braces and joint strengthening exercises is a physiatrist or physical rehabilitation specialist. He is absolutely worth his weight in gold. My experience is that you are better off with someone who does not specialize in spinal cord injuries (often abbreviated as SCI).
As far as pain management, well, that is the harder piece. I go to a pain management center, and they take pretty good care of me, but I have heard more than a few horror stories about pain centers that don’t believe in long term pain medication and constantly pressure you to come off your meds.
As far as non-medication approaches, meditation is quite valuable and has the advantage of being cheap or free. You can find guided meditations on the web, some of which are quite good. Core strengthening exercises are also highly recommended. When I was relatively healthy, I found yoga really helpful, though you want to be careful with that as it can make our already too flexible joints even looser! I have heard that Pilates is similarly helpful for many people with the same caveat. With all exercise programs, avoid pushing your joints into hyperflexion and respect your limits.
I am not familiar with the resources available in Florida. I would join the Ehlers Danlos National Foundation at ednf.org (it is free) and ask for recommendations there.
I’ve experienced great results with yoga and Pilates as well. Recently my doctor recommended switching to Tai Chi to keep subluxations to a dull roar while reaping the same benefits as the yoga/Pilates route, as it doesn’t concentrate as much on flexibility. There are some routines on Hulu & available on YouTube or other spots on the web. I currently use Mayo Clinic Jaxonville (they’re the closest tertiary care center to us that treats EDS), but there are plenty of low cost options available to you here. We live in the same state and I can email you the links you’ll need, if you would like.
Ooh, I keep meaning to check out Tai Chi, but I never remember at a convenient time. I figured it might be good, but I hadn’t heard the experience of any other EDSers at using it – thanks for mentioning it!
I just came across this post and thought I should give it a shot since the date seems to be current and from today. I have EDS and was diagnosed in 2007…. I am in my later 50’s and honestly it was a relief to get a name put to what was happening to me. All the way from clumsy kid on up to not being able to keep up with folks at work (whole other story). I am trying now to get disability. What really interested me was that you have a “service dog”…. I am working towards doing the same and wanted to know where you had your dog trained? I just got the puppy that I want for my helper and know we can grow into this experience together but not sure where to start? Also, interested how you ended up with a physiatrist and wonder if swimming was ever recommended to help strengthen muscles. I think one of the hardest things about having an EDS diagnosis is finding continuity of care. The initial “gatekeeper” medical professional needs to know about EDS and have ways to tailor the care regimen best for the individual. Although we all end up with pain management and braces for various joints it is still such an individual journey.
It’s an old post, but I do my best to keep up with the comments on all of my posts.
The organization I got my service dog from actually does everything, including breeding and selecting the puppies, so they wouldn’t be helpful if you have a puppy you want to start with. As you already have your puppy, you have 2 basic options: one is to hire a trainer, the other is to owner-train. If you’re interested in owner-training, you’ll want to clicker-train. There is a series of DVDs on clicker-training that goes into how to train a service dog – we watched part of it at my service dog school; I think this is it – http://store.clickertraining.com/cltryoownasd.html – but I’m not 100% certain. There are also training email servers, and Karen Pryor’s work is very very helpful. If you think about going that route, my friend Sharon has a blog about owner-training her SDiT (service dog in training) over at http://www.aftergadget.wordpress.com. It’s currently mostly inactive, but go through her archives. If you hire a trainer, I would suggest one affiliated with Assistance Dogs International, as they have guidelines on what a trainer has to be able to do to train.
I ended up with a physiatrist through a slightly odd route. A massage therapist I used to see in California pointed out that I have trigger points (TrPs), though we didn’t know why at the time. So I looked for someone who treated TrPs, hoping to decrease my back pain especially. It was a good idea but a bad match – he didn’t really get how my joints were problems and didn’t want to brace things. However, my GP liked the idea of me seeing a rehab specialist, and wanted me to try another one if I didn’t like the first one. I talked about it with physician friend of mine went to med school in the city I live in now, and she was able to recommend someone who had taught a rotation at her med school. The second try was the charm, and I’ve been seeing the same guy since well before I got my diagnosis. Part of what I have always liked about him is that he is very good at looking at ALL of the joints. It has influenced what kinds of braces we try, and as a result I have been a lot less likely to have adjacent joints injured by my braces. Also, rehab specialists have some expertise in dealing with things that are broken and staying that way – they don’t expect you to just be able to heal up, so they’re more willing to look for solutions that work with bodies like ours, where the joints will never be able to recover to the way they were before the series of injuries that is our everyday life.
Continuity of care absolutely is a bitch (pardon my language). I’ve done an enormous amount of directing my own care, to be honest. Fortunately, I have some expertise in reading academic material (so I can read some of the medical papers on EDS and understand most of it) and I’ve had two GPs who were willing to admit that I knew more about my condition than they did. They let me direct my care a lot, and they read articles I brought them that gave them an idea about all of the things that were going on. A doctor who is willing to be informed is of as much value as one who already has the expertise, if not more – so many people come out of medical school with wrong ideas about EDS in their head! The other thing you need is a doctor who is willing to commit time to listening to you, because EDS almost always involves a lot more going on than other people do.
I have had swimming recommended to me many, many times, but it’s a bad exercise for me. It is one of the most frequently recommended exercises for EDS. The way my hips and shoulders have been injured seems to leave me very, very prone to swimming-induced subluxations, though. I can neither do a flutter kick (the kind most people think of when swimming, and what you use for freestyle/crawl) nor a frog-kick/scissor kick (which is what you use for breaststroke) without hurting myself. I’ve tried. For aerobic exercise, I use a Gazelle machine, which is a non-impact exercise. It’s not for everyone; you have to have decent balance and be able to keep your hips squared forward reliably, but it’s the only thing I’ve been able to find where I can exercise without injuring myself. For strength, I do individual strength exercises and when I’m healthy enough, yoga.
I;m glad you found the earlier comment about Tai Chi useful. I used it as a teen with severe injuries to improve as well, but had left it for yoga. I was shocked at how quickly the right exercises in both relieved my hip pain and strengthened ankles, knees and legs wrecked by EDS.
More so I was excited to read this last post. I used a gazelle for quite a while and loved it so much that I’m considering a treadclimber. A new gazelle would obviously be far less expensive :-)! No matter: it rocked.
Swimming, for someone without the injuries that would preclude it, is also a large part of my therapies. Though always exhausting, I’ve found that the overall strength it build over time is an enormous weight off my joints and builds coordination as surely as the when I simply cannot be trusted to deal with balance, walk or stand. Because of that, various water therapies are very popular for treating extensive EDS injuries.
It also allows me to remain more consistent in exercise than I would otherwise be able to, as long as I have a buddy to offset the danger of being alone in water during a seizure. (My service dog hates the water, so we’re hoping to see how she reacts to an issue before letting her do the supervising.)
Thank you both for bringing up such great options!!!
I was two when my shoulder dislocated while hugging my father. My first memory of abnormally high pain was when I was seven. People always called my clumsy, so clumsy I could knock things over without being near them. I never really thought myself odd until I stared high school and got my first wheelchair. Apparently most people don’t walk out of their hips. But I still showed off to people, moving my should in and out of socket and doing really creepy things with my jaw and hands. I spent most of my childhood in the hospital and it continued well into adulthood. My parents were pretty damn poor and as such, I am pretty damn poor. I have never been tested for EDS, but I am confident that it what I have. I saw a rheumatologist once and he said it sounded like fibromyalgia, but I think he was just trying to get me out of his office because I did not have insurance and was not the best candidate for a patient. Anyway, I did not intend to leave you my lifes story. I just wanted to let you know that it is relieving for me to read a blog about a person who not only has a long list of character building life hurtles, but also deals with it and get on with life. I especially enjoyed your angry rant about how people treat those with disabilities. I have them often it seems, but I tend to do them in restrooms when able bodied people use the accessible restrooms, or in stores that I cannot get my wheelchair into. Thanks for having this blog. Its nice feeling like there are many of us out there. I will probably follow your blog, but as computer screens give me a migraine, it will probably be sporadic.
Thank-you so very much Wow I fell like a wait has been lifted off my shoulders
Hi, I don’t know if your blog is active but if so glad I found it. I am recently diagnosed but after 3 years of investigations. My query is does EDS continue to get worse ? My life has changed so much in the last 3 years and I am scared for the future. Constant pain is driving a wedge between me and my partner, we have been together for 4 years and I don’t think he signed up foe a cripple.!!!
The problem is how much I have changed. I used to be unstoppable but now I just stay at home in pain. I am waiting to go for physical rehab but am desperate for braces as I think they will help. I am in the Uk and the NHS only has one clinic in the whole country , so a slow process.
Any ideas or tips gratefully recieved , thanks xx
Oh, I’m here! I’ve just been going through a rough time for…well, quite a while. I had Lyme disease (maybe? may be an auto-immune thing), which I really don’t recommend, and then I got a new pet dog, and then I rather badly injured my back, and…yeah.
EDS does not necessarily continue getting worse. A big part of preventing that is getting used to your body and learning to not injure yourself. That means learning to take it easier and knowing your limits. Learning your limits is a BIG part to living well with a disability.
Good pain management will help, I promise. Just don’t be surprised if it takes a while to get there. I am on the fentanyl patch, and to get on that you have to develop a tolerance towards opioids first – I was on long-release morphine before that, and on vicodin before that. It probably took a year after I started seeing a pain specialist to get me to a good level of management. You may not need as strong of medication as I do, but know that it can take time if you do. Even if it takes time to get up to the level of medication you need, each increase will give you more relief. If you aren’t seeing a pain specialist, you certainly should be! Ask for a referral, you will be glad you did.
Being unstoppable is something you can’t do anymore. It’s hard to acknowledge and live with, but every time you try to act that way, you’re going to spend longer paying for it than you did being ‘unstoppable’! You have to learn to pace yourself, which both means taking things a bit slower and knowing when to take a break and when to stop altogether. It’s a learning curve, and the only way you’ll get it is if you start working on that. You need to learn when you’re getting fatigued enough that you’re going to be in pain later, and stop before you get to that point. Also, when your muscles are tired, you’re more likely to have a joint injury.
You need a good level of exercise – that’s really important. Particularly, you need to be doing resistance exercise, because with EDS, your muscles have to help hold your joints together more than for people who don’t have it. Braces will help, but a physical therapist who knows what they’re doing can do you a lot of good. Really, I love mine. I’m back seeing him (again) because I managed to dislocate a couple of ribs. Massage can be very helpful.
You need to train yourself to stop doing end-range motions – that’s where you stretch to the limit of what your joints are capable of, and your joints are capable of stretching to the point of injuring you. I found looking at images of normal range of motion helpful, because I could compare mine to that and see where I should be stopping. Then it’s a matter of practicing it until it becomes habit. An occupational therapist is very helpful for this, and a physical therapist is another person who could help you with it.
Braces will help, but strengthening your muscles is part of the solution, too. The more you let your strength erode, the more injuries you are going to have, no matter what braces you have. If you can see a physical therapist to start this process, that’s helpful to prevent injuring yourself when you start your program, and then you just have to stick with it…pretty much forever. Your joints will always need help from your muscles. That’s just a fact of life for you and me. T’ai Chi is a good way to start working on things in a low-impact, easy way. Just remember, if you haven’t been active, start with a SHORT, low intensity work-out, and build from there. I know it can feel ridiculous, especially if you were buff before, but you have to stick with what you can do.
I think you also need to see a psychologist/therapist who has experience working with people who have disabilities, because it sounds like you aren’t adjusting well mentally. Don’t blow this off, I know a lot of people do, but mentally adjusting to living with your disability is a big part of living well with it. As long as you’re frustrated, sad, angry, etc, it’s very hard to pace and work on living with who you are now. There’s a grieving process that’s part of this, because your life DID change, and in a way that you don’t like, and if you don’t work through your grief…well, I’ve seen a lot of people with disabilities do self-destructive things. Also, learning mindfulness meditation can actually help with managing pain. Your partner may also benefit from seeing someone, and it may be useful for you to see someone together.
I don’t know how old you are, but for most people with EDS, the hypermobility starts reducing in their late 30s and 40s. As other people are starting to complain about their bodies getting stiff, we’re usually celebrating because FINALLY things stopped bending in ways they shouldn’t!
Finally, with your partner…how to put this. You need to reach a new normal, and you need to learn ways that you can feel ‘togetherness’. I’m obviously taking a stab in the dark here, but I’m guessing one of the issues is sex. It’s damn hard to have sex when you’re in pain, especially if that pain is from unstable joints. First off, if that’s the case, you are SO not alone. I’m more than happy to write out details of how to make things work, if that’s something you’re struggling with, but it tends to be a little detailed and I only have so much typing ability at once, so if that’s the case, just say and I’ll write something up. The other thing is, when you’re young and healthy, it’s easy to have sex (and all too often, we mean just penis-in-vagina sex when we say ‘sex’) be the be-all, end-all of affection in your relationship. Do you cuddle just to cuddle and be close? Do you touch each other with affection without expecting it to lead to more? Do you kiss just to kiss? If you don’t, that’s something you and your partner can learn to do, and it can bring you closer. Also, ahm, combining cuddling with masterbation can be a good way to go when you can’t have more typical sex. A big part of having a love-life with EDS is adapting. Things like adaptive furniture (wedges, special couches, even strategically placed pillows), trying different positions, and expanding your definition of ‘sex’ can all be part of that, and really, truly, I promise it’s possible to have a satisfying love-life and EDS.
Another guess, but I’m guessing that your EDS injuries and pain may be stopping you two from doing things you used to enjoy together. It’s important to find time to enjoy things together. The first thing I’d suggest is trying to adapt what you’re doing. We like going to the aquarium together, but if I go on foot, I’m worn out in no time, so we take either my wheelchair or my scooter so that we can enjoy the time there. If you don’t have a wheelchair, you’d be amazed by how many places have them for the use of their customers at little or no cost! Also, there are resources for getting a wheelchair at low cost if the NHS won’t provide you one. Doing things you like in a wheelchair or scooter is a hell of a lot better than not doing them at all! Yes, it’s weird the first, but you get used to it. I prefer my scooter to the wheelchair, because then I still have control over my movements. (My wheelchair is a typical transport chair, and it’s big and heavy and exhausting to push – with a self-push chair, you still have that control, but do be warned that many EDSers are prone to injure themselves while pushing. It’s a bit hazardous to the fingers and shoulders) Try new things. My fiance and I sometimes just spend time on the couch together, each of us on our own laptops, and it’s nice just being…there. We watch more TV than we used to, because it’s something we can do together. If there’s a book you’re both interested in, take turns reading to each other, it’s a surprisingly intimate experience. I know couples that play role playing games together (not the sexy type, the kind where you have characters and you’re collaboratively telling a story, sometimes online, sometimes with a book and dice), couples that play video games together, board games, etc. As long as it’s something you can both enjoy, you’ll be continuing to make your relationship fun, which is a big part of keeping a relationship happy.
Your partner may be feeling scared, he may be at a loss, he may be frustrated that he can’t help you, he may be sad to see the ‘old you’ change. I know you say it’s pain driving a wedge between you two, but have you talked to him about what he feels? The distance may be something else entirely, and you’ll never know if you don’t ask. And you can’t work to heal wounds you don’t identify first.
I hope that this helps. I hope that you can come to stop seeing yourself as a cripple. Your life has certainly changed, and that takes some getting used to.
Would you be willing to tell me the story of the circumstances in which you were diagnosed and how old you were? My doctor is looking into EDS for me and while fairly healthy growing up i wore knee braces in high school because they would all of a sudden drop out when i was walking and i would fall down, they thought i had arthritis but couldn’t diagnose it. Now at 28 i have had several neck injuries, severe tendon pain, my skin is very stretchy, TMJ, IBS, mental problems due to being sick often and im not sure if the low immune system is a result of stress or the other way around. I have chronic muscle pain and wake up in severe pain if im not sleeping on my fancy supportive mattress.
I guess im wondering if your situation started out like mine since i’ve never dislocated a joint before but most other things seem to fit. Have you had dislocations all your life or did they get worse at a certain age? What did your doctor do to diagnose you?
Hi Lulu,
Thank you for your lovely emails.
My circumstances are that I am 49, and up until three years ago I was ‘young’ looking/acting. I was lucky enough to be a travel writer and was always jetting about the planet. My last trip was a 3 month overland trip from London to Sydney, through Europe Turkey, Iran, Pakistan,India, Nepal, Mt Everest, Indonesia,Bali Oz etc. I was fit and active ( although tired and weak at times.) Back pack on and good to go.
BUT, bot has that all changed now!!!
As a small child I had leg callipers as I had bent legs and after that I was prone to accidents, falling,ankles knees shoulders ‘giving way’ etc. As I got older I was prone to a few dislocations but put it down to being clumsy and a bit fearless. I got to 6ft tall ( and very skinny ) by age 11.
I had periods of total exhaustion during my life but put it down to living hard.
Three years ago I started having joint pain and my joints would sublux very easily.
Then on one day, I squatted doen and couldn’t get up. And that was it, from that day on I have been ‘disabled. Constant pain, unable to go upstairs, or walk more than a few metres. And the exhaustion …….
Getting to this point in diagnosis has taken 3 years.
First they thought it was a stroke, then brain problems , all sorts but never a diagnosis. Each consultant passed me from specialty to specialty, cardiology, neurology etc etc fortunately I have a very good GP who actually believed me ! Finally I was sent to a Professor who specialises in Marfans EDS etc and within one hour said I had Marfans, EDS and surprisingly POTs which explains the exhaustion and heart rate issues I have had my whole life.
Tomorrow I am going to The Royal Orthopeadic Hospital to see consultants about my Hypermobility, I will then go into a three week rehab programme.
I am also now seeing a Professor of Autonomic Diseases ( Heart rate Exhaustion etc) and being treated and studied at Kings hospital in London pain management etc
I feel fortunate that after three awful years that finally I have a diagnosis and stand a chance of getting better. Interestingly I was on a low carb diet for 7 years but stopped a couple of years ago, I have been told to go back to it as it is a recommended diet for people with POTs.
I am lucky that my partner is pretty supportive MOST of the time, it is difficult as we have only been together for a few years and when he met me I was simply an accident prone hyperactive. The fact that I am now so different is hard for us both. Although I am getting used to it….slowly.
If my GP had not known me so well ( that is , knows that I am not a hyper-condriac) and he did not give up on me. I felt that after each scan, or test that the consultants somehow thought that I was making it up. That may not be true but each time they couldn’t explain it I felt that they were dismissing me out of hand.I hate the thought of deteriorating more and not being me.
I have 5 grown up kids and we all used to head of on adventures together in far flung lands , they too are not used to the change and as it is not always obvious tend to say things like ‘you’ll be fine, its just your age etc etc ! They have no idea what it is like to be jealous of active 80 year olds !!
I am sure all of this is familiar to you, how did you get diagnosed?
Thanks Lulu
jo xx
a lot of that is familiar to me, though a lot got worse after i had my son who is almost 3 now and im guessing the hormones in pregnancy that loosen the ligaments and joints made whatever is going on with me worse.
Everyone on my dads side can bring their thumb down to their forearm and my grandmother has dislocated a lot of joints but im the only one who has more severe problems like chronic pain and IBS which are pretty disruptive to my life. I often get neck or back spasms that are no fun at all, usually from lifting my very large son 🙂
I always assumed i would eventually be diagnosed with an autoimmune disorder since my mother has MS though my issues dont fit into any of them very well, but i know something is wrong. I have had many doctors who have done ANA tests, celiac tests, laparoscopic surgeries, etc but most tell me that all of my symptoms dont connect so they’ve treated them individually. I dont have health insurance right now so its been a little hard to get help but one of my teachers who is a CST among other things, was examining all of us in class to show us how to look for infant tongue tie (im training to be a lactation consultant) and told me my jaw was hypermobile and then asked me to show me the rest of my flexibility. She suggested i ask my doctor about EDS since she does know about some of my other issues and so my doctor is doing some research into it and how to go about diagnosing me if thats what it is. It seems like thats what it is and it would explain so much for me. I’m kind of hoping to just be done with all this uncertainty and confusing symptoms and have a stupid diagnosis no matter how bad it might be which im sure you can relate to. sometimes if i say that to a doctor they treat me like a hypochondriac from then on out which stinks.
I was doing more research on EDS since the information correlates so well so i was sucking up all the information i could find and came across your post which paints a much clearer picture than just symptoms lists on medical sites, so thank you for that. I’m still waiting to hear more about what my doctor thinks since she is not very familiar with EDS but she agreed that it made sense. I would much rather have answers and be proactive than confused and in pain.
Absolutely!
So, here’s the thing about EDS-related dislocations: unless you know exactly what you’re looking for, it’s easy to miss them. I have injuries that go back to childhood that in hindsight my doctor suspects may have been subluxations (that’s a partial dislocation). Because they aren’t full dislocations, they don’t look grossly wrong the way a severe dislocation can, they just hurt. It’s not terribly uncommon for us to dislocate something and have it move back into place on its own, and a lot of doctors are unwilling to diagnose a subluxation or a dislocation unless they see the joint out of place right in front of them. If your joints move back into place once the stress that has put them out is removed, you may be having subluxations or dislocations and just not have anyone correctly identifying them.
I was a theoretically healthy kid, though prone to bruises from unidentified incidents – I tended to have golfball sized ones on my shins and never know what I’d done to get them. I played soccer and loved it, I rode horses, and I skied. I had occasional injuries that were quite painful – a badly jammed finger that swelled horrifically, but there wasn’t anything broken or torn, that sort of thing. I feel like the first time someone should have suspected was my sophomore year of high school. In the course of one academic year, I ‘badly strained’ both ankles (playing soccer), had a back injury (theoretically related to a car accident a little under a year beforehand), and then a slight ACL tear (knee injury, done while skiing). I feel like someone should have seen that constellation of injuries and said ‘this isn’t normal for a girl her age’, but no one strung them together. Because I was in a knee brace too long and didn’t have a transition through physical therapy, I developed problems with my kneecap – it started subluxing all the time, to the point where it gouged out a tear in my sub-patellar cartilage that plagues me to this day. I didn’t know my kneecap was partially dislocating until I was sent to a physical therapist after the tear had been made, and he identified it for me. I probably dislocated a bone in my wrist roller skating at 16, and dislocated a shoulder in a car accident at 17, dislocated it a different direction rock climbing at 18, and then had chronic partial dislocations for the next year and a half or so because my joint capsule was just too loose, until I started doing yoga religiously which stabilized the shoulder and prevented a shoulder surgery that probably would have gone badly, as joint surgeries in people with EDS are higher risk of complications and lower rate of good results. I only knew that I’d dislocated it rock climbing, and after that, I could be certain that I was partially dislocating it because it felt the same.
Other than the random injuries, I was on the whole pretty healthy until I was 24. I wish I could tell you what changed, all I know is I woke up one day with pain in my hands and feet, and over the next three days it spread to every joint in my body, and most of my muscles, too. I developed a chronic pain condition almost literally overnight; my doctors disagree about whether it’s fibromyalgia or not. At that point, I started looking for answers online. You have to understand, like most people, I assumed what my joints did was normal. I didn’t realize that my joints bent farther than they were supposed to; I never thought to compare my elbow extension to anyone else’s. It was only once I did that I noticed that my knees and elbows all bent significantly past 180 degrees, much past where they are supposed to stop. Part of me is angry that no one noticed that when I injured my knees in high school, or when they bothered me later, in college, and I needed a cortisone shot in my left knee. An orthopedist pointed out to me that I was generally hypermobile when I was 21 and facing the possibility of shoulder surgery for a second time, because it’d become unstable again. Even then, he didn’t say anything beyond ‘you’re hypermobile’, and I didn’t know that it put me at a higher risk of joint injuries.
Anyhow, so I started looking for answers. I joined a chronic illness forum that no longer exists, and the people I talked to there suggested over and over that I think about seeing a geneticist to be evaluated for EDS. I wasn’t convinced. Sure, my skin was super-soft, didn’t callus well, and was prone to injury and dermatographia (with light pressure, I can draw red lines on myself). Sure, I had these joint injuries, and was in all kinds of pain now. But I didn’t have the stretchy skin, and I didn’t realize my joints bent too far. After a number of months, and various specialist visits, I became more willing to listen. Oh, yeah, I have GI issues (and they were multiplying – not just IBS, but a hiatal hernia and GERD). Oh, yeah, the easy injuries. Oh, hey, these injuries that were way more painful than what my doctors diagnosed – I’ve had both strains and dislocations of the same joints, and the degree of pain is quite different. The velvety-soft skin that tore so easily. The eternally fragile fingernails. It just stacked up to the point where I believed I had EDS, and I’d seen enough images of what normal knees look like to be able to recognize that mine bent too far (18 degrees past where they should stop). I didn’t yet realize my elbows were weird, though. I brought it up to my doctor, who thought where was a ‘facial type’ that went with EDS, and so said I couldn’t have it (she’s wrong – there is a facial type associated with vascular EDS, but even then it’s not universal). She sent me to a second rheumatologist, with the agreement that if he couldn’t figure out what was wrong, she’d send me to a geneticist like I asked. That second rheumatologist was the first medical professional to suggest EDS after seeing me.
So I finally had my geneticist referral. I made an appointment with the best specialist on my side of the country, who had diagnosed several acquaintances. Unfortunately, she was out of network for my insurance, so I also made an appointment with a geneticist in my city who supposedly specialized in EDS and could see me two months sooner than the ‘big gun’ could.
The less said about the visit with the geneticist in my city, the better. He diagnosed me with ‘familial joint instability’, but wouldn’t explain to me how that was different from EDS, nor why he diagnosed me with that in spite of my GI problems and fragile skin and whatnot. He had a meeting to get to, and he talked over me and didn’t answer a single one of my questions. If my then-boyfriend (now fiance) hadn’t been there, I honestly don’t know that I would have believed he really treated me as badly as he did – I would have questioned my memory of the event.
When I saw the other geneticist, it was a very different visit. For most people, EDS is a clinical diagnosis, so there isn’t just one test that says yes you have it or no you don’t. Anyhow, she talked through all of the medical problems I mentioned, and then she used the Beighton scale to evaluate me for hypermobility. I’ve had problems with my thumbs and wrists for years (and more than a few injuries), so I can no longer do the thumb-to-wrist thing without pressure, but I got a score of 4 because both of my knees and both of my elbows hyperextend. The Beighton scale is an important diagnostic tool; if you score higher than a 3, there’s hypermobility, and that works into your clinical picture. I also have grey sclerae (that’s the whites of your eyes); people with connective tissue disorders often have blue or grey sclerae. The sum total of the collection of injuries, a suspicious Beighton score, hypermobility in joints that the Beighton scale doesn’t consider like my ankles, my GI issues, the velvety, delicate skin, the grey sclerae…it all added up to a diagnosis of classical-type EDS.
Since the pain stuff started 5 1/2 years ago, my joints have definitely gotten worse because I’m not able to exercise the way I used to. I was something of a gym rat before I got sick, and that helped a lot with minimizing the joint injuries. I sublux things all the time – I kind of feel like my joints are just rattling around waiting to pop out.
I hope some of this is helpful to you on your own journey!
oh that is so good to know, looking back i wonder if what happened to my knees all through my teen years and some in my 20’s was those kind of dislocations! Ive also have neck and back injuries that doctors couldn’t really explain and one just assumed i fractured a vertebrae and they just couldn’t see it on the x-ray, same with my wrist when i fell after my son was born and others.
I also find that if i go on a small hike uphill my tendons in my calves, shins, and ankles will hurt for days and make me walk funny but lower impact exercise makes me feel stronger like tai chi.
This is so helpful, im seeing my doctor tomorrow to talk more about it so hopefully some kind of better management will result.
I get it!
But what you say makes me feel sad
My life is exactly like yours
What makes you happy I am in pain all the time I don’t enjoy anything I used to.
Mainly cause I can’t do it.
I need a new reason so what makes you happy I am about to give on that idea.
Jamie
Sorry it’s taken me a bit to get to this. I’ve been finishing up physical therapy for my back, and moving (we’re mostly settled in the new place now).
You have to find something new to enjoy if you can’t do what you used to do. For me, I learned to knit and crochet and spin yarn, because with my silver ring splints I can do those without hurting myself. I spend more time in with my fiance, when I used to be more of a social butterfly. I have online friendships that I enjoy. I read a great deal, and write some. I paint. I draw. I just bought a loom, so I can learn to weave. It’s all about finding new hobbies, new things you enjoy.
If you’re in pain all the time, you need to get on your medical team about better pain medications. I have pretty low levels of pain because of the medications I’m on, which helps a lot with being able to enjoy…well, anything! You will probably need to see a pain specialist, as most GPs aren’t comfortable prescribing all the time. Before you go to a new pain doctor, do look them up online – there is an unfortunate trend for ‘pain centers’ or ‘pain clinics’ to be all about getting people off medications. They do sometimes have valuable input, like finding techniques to reduce your pain. You might want to ask about a TENS unit, and there are medications like neurontin, lyrica, and cymbalta that reduce pain without opioids (which are the harder meds to get). I use a combination of different kinds of medications.
I hope some of this helps!
Jamie: Have you tried to find a support group in your area for people with EDS? Check out ednf.org which is the national foundation and see if they list any groups. If you can’t afford to join ednf they can waive the fee. You’ll have to research the site because I can’t remember how I did that sorry…..
Don’t give up because you will find what works for you. I have gotten a dog in training as my service animal. She is great! and loves me unconditionally!! She goes everywhere with me now. That is another option you might look into 🙂
Diana
Oh yes, a service dog can be a huge mood booster. Hudson has been a great help in making me feel…less alone, and less incapable of taking care of myself. And when this first hit me, I did feel very alone indeed – partly because of culture shock (I’d just moved across the country) and partly because being sick had wrought havoc on my social life. Law school social patterns are disturbingly like high school social patterns, and the sick girl (who talks about being sick and hurting and confused about why) who is also the teacher’s pet/knowitall (what can I say, I really do love to learn)…well, let’s just say that it’s been very hard for me socially.
Getting to know other people in the disability community, largely online, has helped a lot. It’s not just knowing that I’m not the only one, it’s having people who can really get it and commiserate. I never have to pretend that things are all good with them, but at the same time, we all are happy for each other when things are going well. I cheer my friends on through surgeries and new treatments; they celebrate with me when I finish a course of PT and am feeling like a human being again. Unfortunately, the place I met most of these people sadly no longer exists – the board has disappeared. Having said that, I’ve heard very good things about the EDNF boards! And the local support group is a great idea. I’m in a major metro area, so I’m somewhat involved in the disability scene here. It’s not specific to EDS, but it is lively and welcoming.
can cats be registered as mental service animals for people with EDS? I feel so depressed sometimes that I cant make it through the day without my kitty…he makes me feel better somehow…I would love information on EDS any way I can get it…I cant find a doctor that even knows anything about it, but reading your posts I have learned so much…my geneticist (which I have lost contact with) had also been a nutritionist and told me I was allergic to fiber and to stop or reduce my intake…my life has been miserable ever since but the digestive symptoms I was suffering from greatly reduced…but knowing that it may be EDS related I was told was impossible…made me rethink reconnecting with this geneticist…headaches, severe menstrual cycles, heat exhaustion, and muscle pain are all problems I cant seem to find suitable relief for.
Well, the simple answer is no, a cat typically can’t be a service animal. To be a service animal, they must be trained to perform specific tasks who mitigate a disability. Also, the ADA only recognizes dogs and in some special cases miniature horses as service animals. ‘He makes me feel better somehow’ is not at all the description of what a service animal does. They have training to do specific things that help someone with a disability – like my dog picking up my keys when I drop them, and assisting me with my balance, or dogs alerting someone with epilepsy about seizures, or a psychiatric service dog who is trained to paw his/her owner to bring them out of a dissociative state.
However, if you have clinical depression (as in, a psychologist or psychiatrist has diagnosed you), it’s possible to get your cat certified as an emotional support animal (ESA). Please understand, you do NOT have the right to take an emotional support animal with you everywhere. Your psychologist or psychiatrist has to prescribe for you to have one, and that letter has to be updated relatively frequently – I think every year. Having a certified ESA gives you rights in 2 very specific situations: renting housing and flying. Whether houses or apartments, a landlord cannot enforce a ‘no pets’ policy, or charge extra rent or deposit (if that is what they normally do for pets). If you have your documentation (a letter from your psychologist or psychiatrist explaining your disability and prescribing the emotional support animal for you) and an appropriate carrier for your cat, and your cat will not be a danger to or interfere with others, you can take the cat on the plane with you.
To the best of my knowledge, it isn’t possible to be allergic to fiber, and from a quick glance at Google, it looks like I remember correctly. That would be kind of like saying that you’re allergic to skin, for example. It’s totally possible to be allergic to peach skin, or apple skin, but to say you’re allergic to all skin would mean that you have such severe allergies that you basically can’t eat any fruits or vegetables. You may indeed be sensitive to something that contained fiber that you were eating – I, for instance, don’t do well with wholewheat or brown rice, but most other major sources of fiber are fine.
Having said that, I’m guessing that you have IBS, from the mention of GI symptoms and getting better off of fiber. People who have IBS usually need to have a very stable level of fiber – that is, they need to eat about the same amount of it all the time – because their bodies adjusts to handling that amount. Most doctors actually suggest relatively high fiber diets for us. We also need to avoid things that cause a lot of gas and things that cause spasming. I highly recommend seeing a gastroenterologist (GI) doctor if you have GI symptoms.
I’m always a little leery of doctors who make recommendations outside of their specialty, particularly when you come up with something like that which is…a bit out there. It is of course your call, but I manage most of my symptoms by seeing specialists in that area. The geneticist is useful to see occasionally to talk about EDS-specific stuff, but most of what I have is better managed by people who deal with that system of the body exclusively. If you have heat exhaustion issues, I wonder whether you have been tested for POTS (Postural Orthostatic Tachycardia Syndrome). It’s pretty common in people with EDS, and one of the hallmark symptoms is heat intolerance. As for headaches, do you know if they are related to tension in your neck? That’s common with us, too. There’s a limit to what they can do for the muscle pain, because our muscles are working overtime all the time to hold us together because our ligaments and tendons can’t. The menstrual issue – personally, my solution has been to have my doctor write for me to skip my period altogether and be on birth control continuously. We’ve tried multiple birth control methods in the hopes of dealing with the pain and cramping and GI side effects, but nothing helped except not having a period.
I would like to know what kind of Dr. I should go to,to get diagnosed? I’ve suffered with the exact same symptoms for as long as I remember,and all dr. so far say they can’t figure it out…so I did some research of my own…I am extremely hypermoble…so I looked that up, and found EDS and almost cried!
it all made sense …now I just need to find a dr. so I can start getting help .
You need a geneticist. Not all geneticists are created equal; if you can, I recommend seeing one who is an expert in EDS. My local geneticist claimed to be, but it was a terrible experience for me. Dr Clare Francomano in Baltimore, Dr. Brad Tinkle in Chicago, and the genetics department at UC San Francisco are known to be superb. You might join EDNF.org and see if anyone has recommended anyone who is close to where you live. I made the trek to see Dr. Francomano after that awful local guy. I had to pay out of pocket because my insurance didn’t cover seeing her, but it was worth every penny.
In terms of getting help, with or without a diagnosis,I have found physiatry (physical rehabilitation) and pain management to be helpful. The physiatrist in particular really never cared what the overarching diagnosis was, he was focused on which joints and muscles were problems and what they needed to work better with less pain.
I have really enjoyed reading all of your posts. I came upon your site in search of advice on birth control options with my severe case of EDS type iii. I noticed a common problem seems to be finding a good doctor or good instructions for a physical therapist. I’m lucky enough to have found both and wanted to share. Dr. Alan Spanos is located in Chapel Hill, NC. He does not take insurance but mine reimbursed me for his office visit. He gives you his personal cell number and never charges for phone calls. I cant believe how knowledgable and dedicated he is to helping me and he truly listens and asks great diagnostic questions. He has also provided my physical therapist with great materials. I’d be happy to forward the email along if anyone needs it. Please contact me directly at butterflypaint@gmail.com
Moriah
Sounds like a wonderful doctor!
Birth control options are indeed difficult. Most of what I’ve seen suggests physical barriers (condoms, diaphragms) or IUDs for us. I personally take oral hormonal birth control. I think that physically, I probably did better on Nuvaring, which uses lower doses of the same hormones because of its proximity to where the hormones need to go, though I hear there are lawsuits against Nuvaring from harms due to pretty severe fluctuations in hormone levels. But not being on birth control is problematic for me – very painful periods, and it affects my GI system badly, too.
My service dog is an English Mastiff. This breed makes great service animals because they have the perfect temperament, they are large enough to help physically aide, they are easy to train, and mine is a rare dry-mouth so no drool!
Mozey is her name and she is from a breeder in Virginia. The man Dan is a farmer with a horse rescue and he uses the money from the puppies to pay the expenses for his rescue horses. He only has two Mastiffs and they are his children so the puppies get lots of love and live on his 75 acre farm. There was a litter of pups born in Feb and will be ready to go home mid April 2014. His pups are only $1,000 which is a third of the price of other Mastiff breeders! His website is http://www.hughesmastiffs.weebly.com
My goodness, I can’t imagine working with a dog that big! Hudson is 65 lbs give or take, and he’s hard enough to fit in places like theaters and airplanes. I can’t imagine doing that with a dog as big as a mastiff! My only other concern with mastiffs is that without very careful training, they can become protective in ways that are not conducive to service dog work (in particular, defending a partner who is incapacitated and needs help from someone trying to aid them). I do imagine that the bigger bone structure is useful for things like assisting with transferring and steadying yourself – that’s a dog you’re much less likely to knock off its feet!
Hi, I read through the entire blog plus comments trying to find the answers I am looking for, but have come up empty-handed. Perhaps when you have time you can respond.
I have a 26 y/o cousin with chiari malformation and EDS. He first started experiencing pain only 8 years ago. He is also a drug addict “trying” to get clean and stay off of heroin (i.e. taking other drugs). He also suffers from bipolar and narcissism. He refuses to work. He refuses to even look for work. He throws a tantrum every time he is not the center of attention, and every conversation he has eventually results in him justifying his drug abuse because of his EDS pain. He says he wants to improve his life, but never takes the steps to do so. To make matters worse, he manipulates his doctors, even his psychiatrist, by selectively disclosing his medical information. He blames everyone else but himself, and he sees himself as a complete victim of the medical system, of his childhood (which was great), of his family, of society. Basically, his entire speech is ‘woe is me, I have EDS, my pain is so bad that I don’t need to participate in improving my life.’ To make matters even worse still, he has recently run completely out of money.
My family has tried what seems like everything. Doctors, rehabs, therapies, you name it. We are at our wits end, and everyone else in the family is giving up on him. His doctors won’t write him prescriptions for painkillers because of his history as an addict, so they give him Tramadol. But just two days ago, he abused that too, taking way beyond the prescribed dosage in performative way in front of our grandparents– he ended up having a seizure from the OD.
Are there any alternatives to painkillers that work for you? He and I have both been told hydrotherapy and acupuncture may help, but these are very expensive, and he cannot afford them. Is there a facility that works to help patients with pain disorders who are also addicts? He needs to find a facility that will not only rehab him physically but also work with his mental illness, and to coach him to find a job and building a healthy lifestyle.
Any suggestions you have are greatly appreciated. I want to believe his pain, but when we are together and he is clean, he exhibits no visible symptoms of being in pain. I want to help him, but I’m not really sure how to help without also ‘enabling’ his addictions.
Thank you.
I sympathize with your situation. My sister has borderline personality disorder and bipolar disorder, which is a similar combination in that it comes with wild mood swings and a complete lack of empathy. She may also have EDS, but hasn’t been evaluated yet, as she gets fed up with the insurance system when she starts to try to investigate it. (Full disclosure: I also have bipolar, but mine is well managed with medication, to the point where I rarely have mood swings, and even if I do, they’re much shallower swings than they used to be.)
It is easy to see yourself as a victim of the medical system when you have EDS, because doctors make so many mistakes in treating us. It varies from things like not supporting hypermobile joints when they’re testing for something else entirely to having your pain and problems dismissed because they aren’t visible to having issues attributed to ‘normal’ things instead of EDS-related things (for example, I have a problem where I feel like I can’t take a full breath sometimes. I was told by an NP and a GP that it was just me being fat and out of shape. My GP, who is wonderful, got to see it when I was having it happen in his office, and immediately pinpointed it as an old injury to the muscles between my ribs that hadn’t healed quite right and needed one simple exercise to help straighten it out). I feel a little bit victimized by my childhood and family occasionally, because no one believed I’d injured myself as badly as I had doing as basic a thing as I’d done. Things like spraining my ankle by fidgeting. I’ve mostly gotten over that, but I had a lot of anger at everyone who didn’t realize there was something wrong with me for the first year or so after I got my diagnosis.
I do take some of the atypical pain relief medications, which could always be worth trying. I take cymbalta and lyrica, and both help me, but my pain specialist has said that I probably have fibromyalgia in addition to EDS, so it may not help him. But as things that don’t provide a high, they might be worth asking a doctor about. Cymbalta has just gone generic recently, which greatly lowered the price, but Lyrica is still under patent so it’s pricey. It might also be worth looking at the older neural pain relievers, as sometimes some EDS pain is due to nerve damage. That’d be things like neurontin and topamax.
For me, the most effective thing is a combination of massage and therapeutic exercise – essentially, physical therapy, though it is rather hard to find a physical therapist who knows about EDS. Mine, who I have seen for the past 6 years, had no knowledge of it when I first saw him, but did a good deal of research. If he can get Medicaid, they’ll cover at least some visits. I get 24 a year.
I did some acupuncture back before we knew what I had, and I don’t know for certain if it was the acupuncture or just spending an hour meditating on relaxing my body that helped. One of the neat things about acupuncture is that as long as you’re a little flexible about the set-up, it can be very inexpensive. I used a community acupuncture place that was sliding scale $15-$35/session. If you think that might be helpful, I’d be happy to see if I can find somewhere sliding scale in your area. Just email me your location, and I’d be glad to see what I can find (you can find my email addy in the second to last box on the right of my blog).
Meditation is helpful. I started with some guided meditations and ended up kind of letting my own meditation direct itself. I meditate every evening before I go to bed, and it makes it much easier to sleep, as it reduces pain, relaxes muscles, and relaxes ME.
I know there are places that treat pain in addicts, but I don’t actually know of specific places. I would suggest that any hospital in a big city might have a program like that. I do know that my pain specialist’s office, which is part of a hospital, does treat former addicts. I don’t know of anywhere that integrates all of the things your cousin needs, though. It’s a rather tall order. You might ask Veteran’s groups to see if they know of somewhere.
I know the pain can be hard to believe sometimes. When you live in constant pain, you rarely show it unless something suddenly escalates your pain quite a bit. I seem totally normal (or at least, I did before my autoimmune disorder kicked in) for several hours, even though the pain is building up from sitting on someone else’s couch that is too deep for me, or having to wear dressy shoes that make my feet scream, or just being up and out and about too long. But if I knock my hip hard on the edge of the table, then you’ll see the pain…for just a moment, before I can fold it up and put it back where no one can see it. It’s not pleasant to look like you’re always in pain, so we learn to not look that way, even though we are in pain. Given your brother’s issues, it’s possible that he’s exaggerating, but…well, he may not be.
One of the other things that should be considered by his medical team is his sleep quality. Not getting enough sleep and not getting good quality sleep make the pain worse for the vast majority of people I have met who have any kind of chronic health issue. It certainly does for me. I need very thick memory foam toppers, sleep medications, and sometimes, just the ability to respect the fact that my sleep schedule has gone far off kilter and it’s going to take me a while to get it back where it should be. Right now, I’m more or less nocturnal, which is pretty miserable, but it’s hard to tackle. My insurance is not paying for one of my sleep medications, and I can’t make any major adjustments in my sleep schedule without it.
I hope this is helpful. It’s got to be a hard situation to be in, and I don’t envy you or him. I can only imagine what it’s like going through life with EDS and Chiari without anything stronger than tramadol to treat your pain – I’m on a lot of pain meds, and some of them are the ‘big guns’. At the same time, it’s hard to deal with an addict – my sister was one for years, so I’ve got some degree of insight into that, though I was away at school through the years when she was at her worst.
Thanks for your post. I’m looking at it because I’m in a great deal of pain and very discouraged this evening. One of my neck joints has come out of place and I am in ferocious pain. I’ve just moved to a different state and so don’t have a chiropractor. I found one in my new area and will see him tomorrow. It’s possible it might slip into place during the night all on its own. But I’m discouraged over the long-term aspects of this. How did you get a service dog??
Ouch! The neck shifting around can be just terrible. I hope you are feeling better by now!
I got a service dog through a program or school. So I went to Assistance Dogs International (www.assistancedogsinternational.org) and looked up accredited service dog schools. I found one that was relatively near to where I was living, had a good reputation, and whose specifics I liked. The school I chose has a very strong follow-up program, with a lot of requirements. Their team training period is about average. Then I visited the school, and I liked what I saw and what graduates of the program had to say, and I thought their dogs worked well. I talked to them about how they matched teams, and I thought it sounded like a very sensible process. So I applied to get a service dog. At that point, I didn’t have a diagnosis, but my doctor was willing to agree that a service dog could help me, with all of the symptoms I had. We were accepted into the program. We went as visitors to a couple of the graduate classes, just to keep learning more. We walked with several dogs, so that the trainers could get a feel for our pace – matching walking pace is more important than you would realize until you work with a dog! For me, it was right about 18 months from when I put in my application to the day we started team training. Some schools have a faster turn-around time, some take longer. I had to make a donation to the program to receive a service dog, but it was nowhere near the full cost of training. Then there was team training – it was very intense, and pushed me to my physical limit for weeks. Afterwards, you’re so exhausted, there aren’t even words for it. I couldn’t even manage things like laundry or making simple dinners after – if I hadn’t had my partner to take care of those things, and a really lovely host, I don’t know how I would have gotten through it. All I was responsible for was directly service dog related.
I hope that answered your question! If you have more specific questions about the program, I’m happy to answer via email.
Hello I totally understand woww ! I have had great luck recently I’ve found a few things that help no dairy This limits joint pain female pains stomach pain bowel cramps Yoga is great whey protien strengthens muscles and gives a lift almond milk helps cool wrap or ice in bandana around neck for heat situations will keep you cool with out too many people noticeing baking soda helps neutralize stomach cranial cervical joint north poll release for migraines ice on low back and neck avoid stimulants like caffine and Nsids can make you Feel worse so can opiates stay natural and dogs are great Helpers companions and buddies for strength training 🙂 never give up the ship
I think different things work for different bodies. Eliminating dairy didn’t help me any (I did try). Whey protein is awful for me – I’m mildly intolerant of some component of whey, so having it concentrated like that makes me feel truly horrible. Cool wraps are very helpful in dry areas, but I’ve found them less helpful in humid ones – they rely on evaporative cooling, which isn’t effective with high humidity. Ice on the neck, the top of the head, between the thighs (up near the groin), and under the armpits is the fastest way to cool a person off – I’ve had to do that a few times when I started crashing in hot weather. Baking soda is basic, so if the stomach trouble is just acid, it’ll help temporarily. If it’s something like chronic acid problems or chronic reflux, you may have to be more aggressive and use something that reduces the production of acid. Cervical traction can release tension in the muscles of the neck and shoulders that cause migraines in some people, but typically once the migraine has started, you’re SOL. Most people need a migraine abortive, and even that can’t wipe out a migraine that is up to full power for me – I need a combination of migraine abortive, anti-nausea drug (typically compazine), and a pain reliever (typically morphine). Stimulants like caffeine can be really hard on the body! Heart, stomach, gut, bladder, and your general nervous system are all affected by them – I can have occasional small doses of caffeine, but if I have more than 1 in 24 hours or 3 in a week, my GI tract and my bladder will revolt, and I am more likely to faint. NSAIDS and opiates can be very effective for some people – I rely on opiates, I’m stuck in bed from the pain without them, and even in my super-comfy bed, I hurt like hell. Opiates let me finish law school. Dogs are amazing animals! Mine helps me through so much, and makes me keep moving even when I don’t want to. No matter how bad my day is, the dog still needs to eat and drink and be let outside. I don’t know about strength training with dogs – I suspect the way dogs like to jerk and tug at things would be quite hazardous for me, with the way my joints dislocate so easily. But hey, if it works for you, you do you!
I’ve been struggling to network. I’ve got EDS too, along with other related and unrelated problems. I wish you the best and I’ll be back for more! My husband incidentally has terrible disabling problems and we are both doctors, unable to work now, and not able to obtain appropriate care in West TN. I loved your comment about people not believing how badly you’ve been treated. Best again.
I’m so sorry to hear you’ve been having all kinds of trouble! It really blows me away the way people just do not get what it’s like when you’re disabled. Sometimes I wish they could walk just a week in my shoes – see if at the end of the week they still don’t think it’s ‘that bad’. Maybe it’d take a month to get it to really sink in. I finally talked to my mother about how dismissive I felt she had been years ago, when I was first sick. Apparently, at the time she was just too stressed out to recognize how bad my situation was, because my sister was in the middle of repeated suicide attempts and severe depression (she’s bipolar, and refuses to medicate it, which makes her…fragile. She’s also got borderline personality disorder, so there is undoubtedly some manipulativeness in the way she uses suicide attempts to control our mother.) We had a pretty good talk, but now my mother FINALLY understands at least a little bit that yeah, I’m emotionally a bit fragile, too. That refusing to acknowledge when my sister is being ableist is hurtful, and hits one of my sore spots like a punch aimed at a glass jaw. I think she finally is beginning to get just how damned hostile the world can be when you’re disabled, and how painful that was when I was new at being disabled. I’ve gotten a bit of a thicker skin, but I still want my parents’ house – the house I grew up in – to be a ‘safe’ space for me.
On the other hand, I love that my mother consulted with me on her plans for her new house. My parents just bought a piece of land in a lovely city a couple hours north of where they live now, so they’re building the house from scratch. It’s going to have things like an elevator big enough for me and Hudson (or more likely, Hudson’s successor – I believe Hudson will be retiring next summer), and even the half-bath will be big enough for us to use it comfortably. Doing things the easiest way for me meant re-arranging some of her ideas, but it’ll make it SO comfortable for me to visit. On the whole, my parents have been good about how they reacted to my disability – for example, when I mentioned I had trouble with round doorknobs but levers were much easier, my mom and I went to the store the same day to buy replacement knobs for ‘my’ bedroom (which my sister has now claimed, but it was the room that was mine as a child, and the one I stayed in up until now) and both of the bathrooms (excluding the third bathroom because it’s my parents en suite, so there was no need to change it). Their response to my needs has generally been to listen and then try to figure out how to make it happen. I just wish they understood better how badly the rest of the world treats me!
Hi,
Thank you for sharing your post. It helps to know that others have had similar experiences. It makes me feel a little less crazy.
I have been bouncing around from doctor to doctor my whole life (29 years) for a wide range of seemingly unrelated issues. A common thing that I have heard from doctors since my early teenage years is some variation of: “Well, it would be normal..[pause].. for a 75 year old”. A neurologist said that to me when I was 14 after a neck injury when he was looking at the MRI of my cervical spine. The orthopedic surgeon said the same thing about the arthritis in my knee, my thumb, and my wrists. I have had chronic neck and back pain and migraines, n anterior cervical discectomy and fusion, 2 ACL reconstructions, a meniscectomy, TMJ degeneration/pain, rib subluxation, thumb ligament tear and 2 surgical repairs, IBS, GERD, vocal cord dysfunction, anxiety and depression, chronically subluxing shoulder… I could go on.
No doctor has ever suggested EDS or hypermobility syndrome to me. Instead, they have suggested that my anxiety (and PTSD) are partly responsible for my chronic pain. I do believe they are related, but it is not the cause. I have lasting problems from injuries from physical abuse as a child – my body took a lot of abuse, but even so, my joints don’t seem to heal like other people’s do.
I have a few questions and would greatly appreciate any suggestions:
1. I would like to find a doctor that specializes in EDS or hypermobility syndrome. I have not been assessed or diagnosed. My searches are coming up empty. Who do you go to? a Rheumatologist? Physiatrist? GP? Orthopedist?
2. Has anyone tried the silver ring splints for hyper-mobile fingers? (www.silverringsplint.com) and if so, have you had any luck getting insurance to pay for them? I have a boutonniere deformity in my thumb and swan neck deformities in several fingers (passively correctable but I can’t actively stabilize or align the joints). I also push elevator and microwave buttons with my knuckles.
3. Does anyone have these issues? Do you think they are from EDS? And if so, any suggestions for dealing with them?
– paradoxical vocal cord dysfunction – my vocal cords collapse when I am trying to get in a lot of air (like during strenuous exercise). I also lose my voice very easily. It fatigues.
– deep aching pain in the hips/ femur. It is especially noticeable during my period but happens other times as well. When I am lying in bed to go to sleep, I need to constantly reposition my hips and the pain keeps me up.
– hemiplegic migraines. Since I was a teenager, I have gotten migraines that are burning pain on the left side of my face, including my nose and even the rooof of my mouth. My left eye gets droopy as well as the left side of my mouth. It looks like I am having a stroke. I get aura – a glowing light around objects that I try to focus on. Sometimes ringing in the ears. Very sensitive to light and sound. I have been taken to the ER several times by well meaning friends who have been convinced that I am having a stroke.
– Floaters in the eyes – I have always noticed that I had a few floaters in certain light and backgrounds (like looking at the blue sky on the sunny day). However, a few months ago I had a sudden increase in them. Now I can see them all the time – like now as I look at the computer screen, when I read a book, walk down the sidewalk.. I went to the ophthalmologist and she said that my vitreous humor is separating from the eye wall and liquifying. She said that it would be normal for a 75 year old, but is very unusual for someone my age (29). She said that there is nothing they can do to get rid of them but I should get checked every 6 months because there is an increased risk of retinal detachment.
Sorry for the long post. I just haven’t been able to talk to many people (or really any people) about this. I am afraid my friends and doctors think that I am a hypochondriac. I look perfectly healthy, but I am in constant pain and have to alter every part of my life in order to function. Thank you for sharing your story and providing a place to connect.
Rebecca
I was diagnosed at 37 after a lifetime of injuries,bruising,aches,headaches,stiff muscles etc. It was a relief also that finally someone WOKE UP! to what was going on. I have many secondary conditions too. I have extreme anxiety and worry about eveything and what’s going to happen next. My shoulder comes out when I sleep my knees are crap etc etc. And I seem to be getting worse. But the worst thing at all is that my 3 beautiful children have also got it. My 17year old and 15 year old are borderline and my 9 year old is just like me when I was younger. That is what makes me sad. I can deal with the looks,pain,dislocations etc etc but not that my babies have it too. And I’m sick and tired of people assuming your lazy or a hypochondriac!!! That turns me into evil dolly when I breathe fire and my eye’s go red. People and their judgement can kiss my arse.
Hi my name is Alexa Melton, I have recently been diagnosed with ehlers-danlos syndrome, but have had the symptoms ever since I was little. I’m 20 now. I have been told by doctors that I only have a mild case of it but I do not understand how that is if I have become unable to lift even 2 pounds without dislocateing my sholder, elbow, or fingers. I currently work but it has become increasingly difficult to do so but all doctors will tell me is that I’ll have to work it out with my boss or get a different job, and tell me they don’t want to label me as disabled at the age of 20. Is there any advice you can give me on steps to take to be labeled as disabled before working destroys my body further?
Hi! I was just diagnosed based on my symptoms alone. Problems with my organs since very young. The pain showed up much later . When I was a ballet dancer. ( for 15 years) I never felt pain, it may be because my muscles were so strong , that I didn’t notice the looseness of my joints. What is making a huge difference is a protocol found by a mother of two sufferers of EDS, and a sufferer herself. Here is the link:
http://ouredsjourney.weebly.com/what-works.html
Also check their Facebook page with the name : Ehlers Danlos Syndrome and Polysaccharides.
Aside from the vomiting issues you suffer from, your description of how EDS affects you sounds exactly like me. It’s wierd because I have probably thrown up less.than ten times.my entire life and I am almost 56 years old. The times I did were either alcohol or flu inspired and once was during my first pregnancy. So amazing how similar all the other manifestations of our EDS are!
I heard you when you said you consider yourself to be fortunate to have a milder case and I communicate with many fellow EDSers who are in very bad shape.
I have EDS as well and I am particularly interested in what you mentioned about your service dog pressing the elevator buttons for you? I have been thinking hard of getting a service dog for various reasons, and your mention of this reminds me of how my fingers have been severely degenerating and how one day I pressed the button to roll down the window in my car and subluxed the PIP joint of my index finger and its been in a permanent ring splint ever since. Is this something your dog helps you avoid with your fingers and hands? I also have episodes (but overall declining in use) of spasming and inability to use my hands w/o severe pain and stiffness and i’m supposed to wear braces 24/7 due to severe hypermobility. My hand therapist says the only way to get over the pain is to not use the hands…??? Ha!
BTW, I want to write a lot more about your post but my hands hurt so much. I’ll respond later when they are feeling better! 🙂
Yep, that’s exactly why he is trained to it, Lauren. Even when I wear my ring splints, my fingers are sometimes swollen and painful from the autoimmune disorder I have in addition to EDS. There are occasional buttons that are a shape or height he can’t easily get to. For those, I bend my fingers and use my PIP knuckle to push them, which I find is far less likely to cause pain or injury than using my fingertip. You might do better using the MCP knuckle (at the base of the finger) if your PIPs are too unstable.
I haven’t had Hudson doing elevator buttons in a few years because we so rarely use elevators out here, so heaven only knows how well he remembers that skill! It was frustrating when he was first getting used to doing it regularly, because sometimes he’d end up hitting a bunch of buttons, or it’d take several tries and he’d get frustrated (not to mention I would, too!), but it didn’t take too long for him to get good at it. If I’d known it would help me, I would have told his service dog school that it was one of the skills I planned to use, and they would have done more focused work on it so he would have been more practiced when he came home with me. But we made it work eventually! I just had some interesting elevator rides once in a while.
Your post has been very helpful to me. I am 65 and just recently diagnosed with eds. While it was very frustrating not to have been diagnosed before now it certainly explains all the knee surgeries, thumb surgeries, shoulder surgeries, hysterectomy. I have a year old German Shepherd that I have been having trained for basic training, ie not pulling my shoulder etc. The trainer is a service dog trainer so starting today we are going to begin the service training. I think for me I am mostly interested in stability. I seem to fall a lot and when I do it takes weeks to recover. It is my hope that Lexi will help to stabilize me so I wont fall down so often. Do you think this is a good idea? While I had planned to work a couple more years, I just gave 8 months notice because of this diagnosis and will be retiring the end of September. My job is very stressful as I am the Controller of a very large company and I feel like stress is the last thing I now need.
There is no geneticist in Tulsa Oklahoma. Do you know of any in Oklahoma? I would like to know exactly what type I have. I do have IBS etc and many, many pharmacological allergies. So from what I gather, an elderly swimming exercise class is not recommended? Tia Chi instead? I just had Plasma Rich injections and it seems to help a bit, although not covered by insurance.
Thank you from the bottom of my heart for your blog. It is wonderful to find understanding. While I feel a bit depressed right now I think that is to be expected and I want to do everything I can to lead as normal a life as possible for the remainder of my life.
You are very welcome!
I think training your german shepherd to help with stabilization is only a good idea if he has very good hips. Stabilization work puts a fair amount of pressure on a dog’s hips, so it is only recommended if the dog has tight hips. You’d need to have him xrayed and have the xrays checked by a specialist. I believe PennHIP is the variety of imaging used by Hudson’s service dog school. If your dog does not have great hips, it may not be safe for her to stabilize you – it increases the risk of hip dysplasia and can make it show up earlier. I’m sure you know that shepherds are particularly prone to it, which is why I’m emphasizing the importance of checking her hips before starting this kind of work. If she has good hips and is otherwise a robust and healthy dog (like, over 60lbs in weight, with healthy joints and spine and good conformation), I think it’s a very logical choice. When choosing a harness, I encourage you to carefully consider how it will distribute any weight that is put on the handle, which is what happens when you start to fall and use a dog to keep you stable. If Hudson’s school’s harnesses were available for sale, I’d recommend them, but unfortunately they only make enough for the program. If money is not an object, a saddler (horse saddle maker) who is creative and skilled could probably make you a similar base, as the school used the idea of a horse’s saddle to inspire their harnesses. The idea is that it distributes the weight over a wide area of the dog’s back and that NONE of it goes on the spine at all, since that is the most fragile part of the back in most animals. I’d be happy to help with pictures if you want to go that route. I know that one person from my school got a spare harness made by a saddler; it was a real work of art with gorgeous tooled patterns, where our harnesses are much more utilitarian. I believe it cost her about $2500, but that did include tooling the entire upper surface of it, which is a few square feet of work.
I don’t know of a geneticist in Oklahoma; as I recall, you may need to travel. I know of good ones in Baltimore (Dr. Clair Francomano, who is my geneticist and wonderful), Chicago (Dr. Brad Tinkle), in Boston (at Tuft’s children’s genetics, but they do diagnose adults; I can’t remember the name off the top of my head but I can look), and I’m sure I know a few others but can’t think of them off the top of my head. Dr. Nussbaum at UCSF was supposed to be good, but I believe he is no longer taking new patients.
In terms of people who can help you nearby, I would suggest looking for a physiatrist – that’s a physical rehabilitation doctor, not to be confused with a psychiatrist, who wouldn’t be much use with EDS! My most useful doctor in getting my joints stabilized and slowing down the injuries was a physiatrist. He prescribed all of my braces and gave me exercises and ways to modify things that greatly improved my ability to do things without injuring myself.
Swimming is very much recommended for EDS if it does not cause you pain! I’m an oddball among EDSers and have a special talent for injuring myself while swimming. I can’t find a stroke I can do that doesn’t hurt, and even just walking in the water leaves me with injuries unless it’s at the exact right depth (about 3 feet; unfortunately, water that depth tends to be full of rowdy kids who knock into me and hurt me!). Tai Chi is one of the more highly recommended land-based activities, which i always mean to try but never get to when I’m feeling good enough to exercise. I’ve been in a massive flare of my autoimmune disorder since May, so it’s been a long time since I’ve done much of anything but move from bed to couch and back.
Feeling a bit depressed right now is totally normal. It’s part of the grieving process. Even when we know there’s been something wrong for a long time, it’s normal to grieve when it gets confirmed and you find out that this is really permanent and here to stay. It’s upsetting. Seeing a therapist, especially one who is experienced with disability, may be helpful for working through these feelings, if they are oppressive. Mine was very helpful to me, and helped me to see that I was not useless though I often felt that way, and besides that realizing that none of us are independent. I may need different help than an able-bodied person, but when was the last time you knew someone who grew all their own food, produced their own clothes from growing the fiber to spinning it into thread to weaving it and cutting it, built their own house and car, maintained every device in their house, wrote every program they used on their computer, etc etc. Nobody can do everything, so we are all interdependent, not independent. No one is really independent. I may need help opening jars and preparing food, but I’m a very creative problem-solver and very good at figuring out how to apply pressure to make the system work (whatever system it is). I think in ways most people can’t, and I’m better at things like finding information and making plans than most people are. Instead of feeling useless, I contribute the things I can, and accept the contributions of people who can do things like carry my groceries and assemble furniture and whatnot.
You may find that you lose some of the things you have used to define who you are. That’s a thing that happens when you become disabled. It’s also a reason to look for new pieces of who you are. I’m no longer a serious, competitive ballroom dancer, but I’m working on starting a nonprofit and I’m a creative knitter who makes lots of things for people including unique stuffed animals for my nephews. I can’t do everything anymore. So I try to pick the things that are most meaningful to me. When I can, I hire someone to come in and do things like scrubbing the bathtub that would flatten me for days, so instead I can spend my time on helping people and knitting and spending time with my fiance. It IS hard for us powerful, capable people to lose being able to be that all the time. Instead, now we have to be more focused and clever about how we do things, and we need to really prioritize what is important.