PrincessTishy

I saw the specialist when I was a teenager but haven't seen him since. Everything started when I was about 11 and finally started getting better when I was about 19. I have seen doctors on and off, mainly when my pain gets really bad. But most of the time I don't have a lot of pain, mainly during winter. I was born and raised in San Diego, Ca., I left there after getting married at 18 and lived in Arizona for a short period of time and then moved back to Cali north of San Diego and over 2 years ago moved to Eastern Pennsylvania where the winters have been the worse I've ever experienced! I got pain pills from my PCP to get me through the winter. I've been tested on and off for Lupus over the years and it always comes back negative. The only thing they'll tell me is "there is signs of swelling in your blood work, but we have no idea what is causing it" What baffles them most is, is that the swelling is only on the right side of my body. A few times it has been the left, but it's pretty much just the right side and they could never figure out why.

They figured out that the cold triggered it, but San Diego has perfect weather almost year round so that was only part of it. Then they figured out that stress seemed to be a factor. I was on pain medication just to be able to go to school, weaned off and a few weeks later put right back on otherwise I could barely get out of bed without pain. It really sucked because I was this teenage girl who felt like a freak! What also sucked was that while trying to figure out what was wrong with me, I was also having to see a hematologist and some lady who dealt with range of motion plus a dermatologist for my bad acne and gynecologist for my screwed up cycles! I was getting blood drawn almost weekly, had appointments every other week and pretty much felt like a damn lab rat! I'd have to leave school early for appointments and the only good thing that came from that was, that my daddy would always take me out to eat wherever I wanted after getting my blood drawn or having one of my appointments.

I recently thought about making an appointment with an RA specialist to try getting answers, but I'm so afraid of not getting one again that I can't find the courage to make the appointment.

I'm thankful that I haven't had a full flareup in so long, just the occasional swelling that a hot shower/heating pad, rest and a tramadol seem to fix.

Maybe I'll make the call this week, it'd be nice to have an answer.

I saw a doctor for a couple years who is a lupus specialist, he was sure I had lupus! After years and years we finally thought I had a diagnosis, but it never showed up in my blood work. I had all the other symptoms though. I was diagnosed with juvenile arthritis when I was about 12 and then with raynaurds phenom but I still have no answer to what was causing my joints to swell once a month. I'm 34 and haven't really had a flare up in 10+ years, thankfully. I'd love to know what has caused me so much pain for so many years but each doctor I've seen has never been able to give me an answer, it sucks. I just want answers!