Pain level: 5
Dislocations so far today: left wrist
Subluxations so far today: Right shoulder, right elbow
Meds: Naproxen, hardcore dose.
Major complaint: more stiffness, weakness, throbbing pain and swelling in the joints of my hand (R>L)
Overall, seeing the new doctor went over well today. This new Rheumologist (Dr. E) seemed nice. He listened and he didn't rush me out of his office like I was an annoyance. Took my symptom/family history and felt up the joints of my hands. Agreed they were swollen and mobility was severely limited for someone with EDS. He moved around the rest of my joints and didn't seem to find anything there.
When he was checking the mobility of my hips, he stretched them to about half their range. (Think while I'm laying down, he takes my ankle and with the knee of that leg bent, he moves my foot to be even with my opposite hip.) Dr. E said, "Huh. And of course because of your Ehlers Danlos, you're ridiculously flexible." I almost laughed because my right foot goes up to rest on my right shoulder. So I really didn't see what he did as "ridiculous" at all.
ANYWAY: After all that and looking back over my lab work, Dr E preambled by saying that there is always a chance that what has happened is that I've caught a virus, even one that never made me noticeably sick, and my immune system freaked out and is trying to fight it--and in doing so, has messed up and is attacking my joints instead. That kind of thing can happen and last from a few weeks to up to 6 months. And then it just goes away. So there is a chance that in 3 months, all these symptoms could be gone.
And then Dr. E says, "Now, with what I see, do I think that's the case with you? No."
Aw, hell. Okay fine.
The thing that concerned him was the calluses-that-aren't-calluses on my fingers. He says they look like I smoke (I don't) but feel not like they are supposed to. He sent me for more blood work (repeat ANA and more specific ANA tests) and is sending me to a dermatologist next for possibly a biopsy.
While he says we are still too early in testing to put anything in stone (ie. specific treatment)--right now we are looking into Scleroderma: an autoimmune disease that involves at best the thickening and tightening of the skin with joint pain, and at worst, the thickening of organ systems. Scleroderma is often preceded by 1-2 years of Raynaud's before any other symptoms show up. I'll have had Raynaud's for 1 year next month. But it might not be Scleroderma, so I'm trying not to worry.
Fun fact about possibility of Scleroderma: Having EDS (extra flexible and extra stretchy skin) would fuck up diagnostics of Scleroderma (stiffness, loss of mobility, skin tightness). And vice-versa. Funny stuff.
Seeing the dermatologist, Dr. R, tomorrow morning. Had my blood work done and boy do I have one helluva bruise. I'm a good bleeder, so normally I do pretty well in this area of diagnostics. Needle in, blood out, sure a bruise, but a small one. This time it was needle in, wiggle, wiggle, blood out, BRUISE!! Where they took from is all swollen, but so is the rest of that arm, so whatever.
Dr. E gave me a new NSAID that is supposed to last 24 hours, so it'll be in my system when I wake up and need it most. Trying to stay positive.
Time: 11:29 PM
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 120º
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 100º