I’ve been doing the ‘dancing from doc to doc’ thing again for about 2 months now. It started with me having back pains for a whole long while now, but these last few months, a bit more than half a year, it’s been getting worse and worse, to the point where I can’t walk right and just want to sit down and curl up.
My first go-to was an orthopedic doc. I fully expected him to tell me to lose some weight and maybe he’d give me a prescription for back therapy training.
instead, he sent me right off for an MRT.
Got that one done, turns out i have spondylolysthesis somewhere between the lowest 3 vertebrae (I’m not sure how to properly phrase it, translating it is a little difficult)
but also… the doc at the MRT place said there’s some inflammation in my sacroilliac joints. so, back to the orthopedic, only to get sent on to a rheumatologist. Done all the bloodwork, there’s some things not perfect, but nothing that would point to something definite (no rheuma factors, negative for the HLA-B, I do have raised levels for anti-streptococcus thingies, so it seems I had an infection there at some point. Though I don’t remember clearly when that was supposed to have happened…)
ANYWAY.
rheumatologist said she suspects something systemic, but I should go see an internist.
done that, went there.
internist spent 10 minutes looking at the MRT pictures and the blood test results, said I probably don’t have rheuma, but sent me home with a package of meloxicam to treat the inflammation and told me to return in 6 weeks to see how things are.
I…
do not know what to do with this…
While i was waiting between appointments, I used google a lot (and I like to think I know how to treat internet diagnosis tools and the information I find around) and I read into the facts and “could-bes” of my symptoms.
I had very much prepared myself to hear “you’ve rheuma” or even “you’ve morbus bechterew” (which is literally the only thing that comes up when i look for sacroiliits)
i am a little thrown that it’s… well… uh… nothing?
just an inflammation, take these pills, it’ll go away?
maybe it’s just my twisted sense of wanting it to be /something/, rather than “nothing”, maybe it’s also part… well, disappointment, because I am currently trying to get everything together to file for disability, I don’t know…
I just can’t find anything about this particular inflammation there, that doesn’t lead up to it being rheumatic…
Awful, isn’t it, knowing that something’s not right but nobody’s able to figure it out. I remember being there for years. After a while you start thinking that the problem is psychiatric.
Let’s go on another tack: do you, or have you ever, had skin problems? I mean things like very dry skin, itching, weird nails (pitted or lifting), toenail “fungus”, irritations in skin folds (like under breasts), anything like that? Does anyone in your immediate family have skin problems?
hey there!
yeah, it really kinda sucks…
one thing I’ve learned, though, is to have a pretty good idea of what my body is doing and what my mind is making my body do
actually, just after I was born, I was already diagnosed with atopic dermatitis/neurodermatitis (whichever is the proper term for it) and I do regularly have smaller or bigger outbreaks of eczema, most often on my fingers or inner thighs, but spots will break out basically everywhere. I think I know what you’re suggesting.
my mom has psoriasis, but I, myself, haven’t been diagnosed with that.
Some google research and asking around and I suspect it miiiight be something along the lines of an activated arthrosis? An inflammation caused by the damage happening to the cartillage…
but yeah, I’m not sure
currently, I’ve been put on 6 weeks of meloxicam for the inflammation and a “we’ll see what happens”.
i’ve actually had them before, when i first was diagnosed with fibro (well, just before that, since the doc thought it might be polyarthritis and started me on meds before he was sure)
they didn’t help back then and they’re not doing much for my pain so far, this time around, so… shrugs
thank you so much for your reply, btw, i really really appreciate it! <3
Dwaggie, if your Mom has psoriasis, you need to make sure that your rheumatologist knows that. Having a close family member with psoriasis would suggest that they should be ruling out Psoriatic Arthritis.
Lower back and particularly the sacroiliac joint are sites that are typical for Psoriatic Arthritis, and PsA might well not show up in the blood. There will be no RA factor, and in something like 50% of PsA patients have inflammatory markers (CRP and ESR) that are in the normal range. This makes it a very slippery fish to catch. Doctors looking at your blood work can easily conclude that you’re perfectly fine, while you know there’s something wrong. I was in a similar position for years, and for a long time I was convinced that the problem was between the ears.
I hope you get to the bottom of this, Dwaggie. Keep us in the loop! Should you start to suspect PsA, Ben’s Friends has a group for that too: livingwithpsoriaticarthritis.org
I have sacroilliac pain due to arthritis in the joints. This is a symptom of psoriatic arthritis which I have been diagnosed with by a rheumatologist. Do you happen to have fingertip and tip of your toes pain?
Cyndy, I hope you don’t mind if I answer that! I don’t know what it is with us Mod Support people, but I also have Psoriatic Arthritis!
My take on your question is that people with PsA may experience pain just about anywhere. But yes, I have pain right in the tips of my toes and fingers. It is a sharp, ‘clean’ pain, as if from a needle. I suspect (but cannot say for sure) that it is more likely a sign of osteoarthritis which of course can accompany PsA.
Are you also a member of the ‘Living with Psoriatic Arthritis’ community? It’s a really good community & you’d be very welcome!
shrugs