I thought I’d give a quick update. I’m still off my prednisone and plaquenil on Dr’s orders from last December and things have been much worse since then. I was told by the UBC lupus specialist I was referred to that my rheumy (the UBC arthritis department head) doesn’t believe in fibro and won’t diagnose it. She has diagnosed me with fibro but was unable to figure out the rest of the problem. I’ve been getting symptoms of Raynaud's cold fingers, toes and nose with my finger tips going dark in colour. So far I’ve been told I have tendonitis in my wrists, elbows, shoulders, neck, back, hips, knees and ankles with arthralgia in my hands and feet. All over tendonitis this is a new one to me.
I hope this finds you all doing well.
Post Edited (BigBry) : 6/16/2009 1:49:16 AM (GMT-6)
Wow, Bryan, I'm so sorry you've been dealing with this intense and unmedicated "limbo" for so long. I don't understand the doctor's thinking. I can see why they would have wanted you off meds for a bit to see what might change/happen....but 6 mos.? And from what I understand it's not at all uncommon for fibro to co-exist with AI disorders. I have both a fibro and UCTD dx. Hope you are getting some help with the pain. Hang in there....are you in British Columbia?
Wishing you better days,
I do know there are docs who refuse to accept fibro as a "real" disorder. (May they all hang by their toes). Is that the doc who took you off all AI meds? So.....tendonitis in ALL your joints is the diagnosis they've come up with!? Weren't you taking Plaquenil before? I'm presuming you had at least a positive ANA marker to get that treatment.....I just don't understand the method to this madness....but I hope they stop stumbling around and start seeing the forest for the trees!
Keep us posted, Bryan - wishing positive changes for you.
21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel