Ok, I'll try to keep this as brief as possible. I think what I need is some perspective as well as advice....I am 34 years old and 32 weeks pregnant with my third child. (My ob says my hip/knee pain is not pregnancy related, maybe exacerbated by it though.) I was dx at 17 yo with rheumatoid arthritis however then told 10 years later they'd rather call it undifferentiated connective tissue disease. I hate listing all the oddities/maybe symptoms so I won't. Mainly I can't stand being in pain - all the time and sometimes I worry if it's this bad at 34 what am I looking at down the road? It's not that my pain is unbearable, only sometimes is it very bad, but it wears me down, the chronicity day in day out of it. I have moderate OA in my C3C4 vertabrae, I have bilateral knee and hip pain all the time and shoulder pain quite often. If I'm very active at all during the day I cannot stand up in the evening. My legs will feel like they hurt all over but like it's most concentrated in my knees/hips/ankles. My neck and shoulders also hurt quite often. I have to be very careful the position my joints are in. I usually feel a bit of discomfort and if I don't adjust quick then I pay for it! We move around a lot so it's so difficult to be seen consistently by a rheumatologist though I try to check in from time to time. I feel like I'm at a point where I need to get some further evaluation done on my knees, hips, shoulders and neck. My last extensive bloodwork was in April this year and it showed an ANA of 1:1280 centromere pattern. The centromere antibodies were elevated to 5.5. The anti-dsdna was sl elevated to 3 but considered normal? The RF was also sl elevated but considered normal - the highest that has ever been recorded was 20 I think back in 2003. I also have a titer of 1:40 of anti-smooth muscle antibody. I get this all-over pain that has increased in frequency and severity over the last 5 years. It's difficult to describe, like from the inside out, and it seems to only be when I'm physically tired and only goes away when I go to sleep. I'm worried about this b/c I'm about to have a new little newborn hence much less sleep! I've been checked for fibromyalgia several times and only have the tender points on the inside of my knees. That seems to be what the doctors go to whenever I bring up this all-over pain, but could it be something else? Any advice, suggestions would be greatly appreciated.
Wow...I'm really sorry you are in so much pain...please see my recent post on this site about "does anyone have a diagnosis of undifferentiated arthritis"? I'm relatively new to the chronic, systemic, autoimmune, connective tissue disease scene, having come down with sudden symmetrical polyarthritis of the fingers, hands, wrists, and feet/toes back on July 1, 2010...but I can totally relate to your frustration with the diagnosis and treatment thus far, speaking of which, are you taking or have you taken any medications over the years for your arthritis (or UCTD)? As you'll see in my post, I was originally diagnosed with SLE based on highly positive ANA of 1:640 (which is one titter lower than yours, which is clearly high then), arthritis, sun-induced rash, and mouth ulcers (I met at least 4 of the ACR criteria for SLE)...after a rough year of being treated with multiple anti-rheumatic meds with overall poor response, chronic pain, and chronic fatigue, I have FINALLY found some relief on the current mix of meds I'm taking, which are a bit extensive but "doing the trick" in helping to control the pain, stiffness, and swelling - prednisone (currently 5 mg per day but we are tapering to get me off it completely hopefully by mid-Dec), plaquenil, imuran, humira, Celebrex, and elavil (low dose for insomnia & chronic pain)...I should also mention that my current rheumy changed my diagnosis from SLE to "undifferentiated arthritis" with suspicion for SLE or seronegative RA...to me the diagnosis doesn't matter too much as long as he is treating my arthritis symptoms as best as possible and he continues to monitor my urine & DS-DNA to make sure I don't get any systemic organ problems (other than the arthritis & skin symptoms I've already had) just in case I do have SLE...he probably could have classified me as UCTD, but the arthritis is my main problem so makes sense to go with the "undifferentiated arthritis" for now until we can see where this is headed...you sure sound like yours is heading towards SLE possibly with that high ANA and possible positive DS-DNA (mine has been negative to date)...I'm assuming you havent shown the typical RA bloodwork, though you originally had the RA diagnosis, correct? From what I've read and my rheumy told me, as many as 15-20 percent of RA patients are "seronegative" having lacking the RA blood markers, BUT (like me perhaps), they will show a positive ANA, which as you know isn't that specific for a particular autoimmune disease...that said, I've been having the "classic" hand/finger/wrist arthritis of RA or SLE (symmetrical and affecting my wrists, MCPs, and PIPs)...sounds like your hands/wrists/fingers are OK? In any case I highly recommend you go see your rheumatologist again to discuss possible treatment options for your chronic pain, stiffness, and swelling...I'm not a pill popper, but the meds I'm currently on have given me the ability to function again, sleep pretty well, and enjoy life (when the past year was very rough full of chronic pain and fatigue)...I'm very fortunate that my rheumy is taking my "undifferentiated arthritis" diagnosis serious
Y and treating me with state-of-the-art meds (same meds used on RA or SLE patients)...and they are helping, so far, so good...keep the faith, hang in there, and insist that your rheumy pursue appropriate treatment (which, as you know, often involves trial and error, which takes much patience and perseverance, both of which you clearly have)...good luck with everything!!!
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