It looks like I’m on my way for an official diagnosis of rheumatoid arthritis. (though I suppose the new news doesn’t knock out Sjogren’s, which is one of the other contenders, though my rheum thinks RA is more likely)
Today I had a musculoskeletal ultrasound. I had worried that this would be very painful, as I remember how much pressure it took to do abdominal ultrasounds. Fortunately, musculoskeletal ultrasounds require much, much less pressure. Unfortunately, it was still enough to be quite uncomfortable. My hands are still crankier than normal, 4 hours later.
The ultrasound determined that I had inflammation in all of the joints they looked at, though they could only see ‘flow’ in one of them. ‘Flow’, in a musculoskeletal ultrasound, helps to make certain that you’re looking at active inflammation rather than scar tissue. However, as all of my swelling has happened since March, they’re willing to accept that it’s extremely unlikely that I have scarring. As far as the exam went, there was one piece of good news for me: no bone degradation/damage anywhere. That’s a big deal with RA, as it is known for eventually damaging and deforming bones and joints if it is left unchecked.
I’m trying to think of this as a good thing. The proof of inflammation, which I could easily see but my rheum wasn’t as certain about, should mean more effective treatment. I desperately need this under better control – I’ve missed an intolerable number of classes, and if I continue at this rate, at least one of my professors will fail me for absences from class. (Yeah, as an undergrad you can get a waiver of that sort of thing, but the American Bar Association has rules that have stood up to challenge in courts about attendance, and all schools that are ABA certified have to follow those rules) And oh, the pain…the idea of being free of this pain seems almost like a dream. Not to mention, my fiance and I want to get an engagement ring, and my fingers have been too swollen to make sure it fits for AGES now!
Anyhow, sorry for the silence lately. This probably-RA has been causing me a lot of pain and keeping me lying down on my side, and I haven’t figured out a good way to use my computer from that position so I haven’t been on it much.
In other news, until I see my rheum (3 weeks from now), I’m switching back to one of the meds I tried and went on from. Salsalate upset my stomach pretty badly, but it worked really well. That’s better than what I’m dealing with now – Mobic isn’t working well and it’s giving me badly disrupted sleep with hyper-vivid dreams.
Brilliant Mind Broken Body 
Having “proof” of what you’ve been trying to convince others of, especially physicians, can be such a relief! I was just talking with another friend last night about the years when nobody believed something wrong was going on with my body, and then things got really bad, and I was still having doctors ask me if I was depressed, etc. Then I started getting low-grade fevers every days, for months, which is typical of CFIDS. A part of me felt so relieved that I had the thermometer as “proof”!
But also, pain management and control, and inflammation control, that is a BIG deal! Being in constant, severe pain is awful. If this will help you get the inflammation and pain under better control, I’ll be very happy to hear that! Is it common for EDS to overlap with RA?
Anecdata (that is, anecdotal reports that add up to being close to enough to report as data) suggests we have a higher rate of auto-immune conditions. Lupus, sjogren’s, and RA all show up in us. If I recall correctly, lupus is more common.
I really, really hope this is ‘proof’ enough to be a diagnosis of an auto-immune condition so we can start with the bigger guns, as I have gone through all of the NSAIDs my rheum wanted to try me on. The only ones that were effective made me quite nauseated. On the other hand, we may end up deciding that nausea isn’t all that bad as a side effect (some of the RA meds have much worse potential side effects) and trying to learn to live with this.
I remember the pre-dx time well. The pain, swelling, disability were very intense. It was the ultrasound which cinched the dx of RA for me. Then my rheumy immediately evaluated me for methotrexate, sulfasalazine, and plaquenil. The methotrexate was the one drug which got things under control. I hope that with having a dx you can find more effective treatment. Good luck and congrats on the engagement.
Thanks!
Sulfasalazine isn’t on my horizon, as I am allergic to at least one of the sulfa antibiotics. I’m nervous about plaquenil as I already am half-blind without my glasses. Of course, MTX is no picnic either; if I get the heavy stomach side effects, my GP and GI may object because I dehydrate and end up needing IV fluids appallingly easily. Agh, after my last ER trip and the hell it took to get an IV in, I’m twitching just writing that.
I’ll pray for you that the right diagnosis is reached. I’m hoping your pain will also be relieved. I have fibromyalgia and I know what a toll chronic pain can take on your life. Best wishes to you.
Thanks! I’m used to some level of chronic pain, which may be fibro (though my pain specialist doesn’t want to diagnose it, just treat it), but this probably-RA thing has sent my pain levels through the roof! I very much look forward to going back to my usual level of pain. I can cope with that, you know?
I just hope you get some relief and soon. I find it funny that doctors need to be test positive for so many of the autoimmune diseases and won’t treat them unless they can classify what they are treating. I am not sure if it is because they are afraid of lawsuits with an unknown diagnose or if they don’t like wondering around in the grey area of life in general. In any case, let us hope this gets you the right relief. Because in my book…that is all that matters!
In my case at least, there was some worry that perhaps it wasn’t auto-immune, as I didn’t test positive for rheumatoid factor or have a positive ANA, so they didn’t want to pull out anything that affects the immune system until they knew. I think that’s the reason they really want positive tests – the immune system isn’t something you want to screw around with until you know you need to.
I’m very hopeful that they’ll be able to do something about the pain, now. At least for the next few weeks, I am back on a med that worked (salsalate). I’d gone off of it because the side effect of nausea was really hard for me, as I already have stomach issues, but mobic turned out to be such a dud (with a possibly even worse side effect – badly disrupted sleep!) that I chose to go back to salsalate. I didn’t want to do it before the test because I wanted my hands to look awful so they could see just how bad it was, and I wasn’t sure how much inflammation would be left on the salsalate.
Kali–
While I’m really sorry that you’re a hair from being diagnosed with rheumatoid arthritis, I’m also really happy for you that you will HAVE a diagnosis. NOW they can get on with working out a treatment regiment. One of the hardest things about RA, other than the pain and disability it causes, is that the medicines tend to work differently for different people. And often, they work only for a short time and you have to try another one. So you’ll need a lot of patience, both with your doctor and yourself.
Here’s hoping that you’ll be able to get the disease under control quickly, and that any further pain and disability will be short-lived.
I know what you mean – sorry you’re joining the club, but at least the club is there to comfort you now that you’re here. Fortunately (?), I’m used to the med-i-go-round, so while taking another couple of spins on it is annoying, it is at least not something I’m unaccustomed to. I’m apparently very sensitive, so I tend to get lots of side effects, which means I get bounced around trying to find something that doesn’t cause just as big a problem. Not to mention that I become acclimated to drugs relatively easily. Bleh.
I’m hoping that they’ll find something that works quickly! I am very relieved to know there hasn’t been any effect on the bones yet, so at least so far, theoretically no permanent damage.