Not sure if the thread is active any longer, but worth a try I guess. I've had RA for 8 years. Intermittent flares affecting different body parts for a few days and remits with steroids (usually). Now, I am at the maximum doses of RA drugs and my doctor wants to try "biologic" drugs. I have delayed starting infusion therapy because of a past history of histoplasmosis in my retina and the fear of overwhelming infection and risk of death associated with this history and the use of such drugs. My doctor rationalizes "are you LIVING now?" I have had increased flares with my RA, but the symptoms are not just joint pain. When I described my symptoms to the rheumatologist, he mentioned that we may be dealing with CPRS/RSD. This struck a chord with me, as just prior to my having symptoms of RA and then being lab diagnosed with RA, I suffered a partial amputation of a finger. The finger was successfully reattached. During my recovery, I had intense pain that was totally disproportionate to what I would expect. I could not even tolerate air blowing on my hand. My surgeon thought it could be the start of RSD. I immediately started desensitation exercises on the affected extremity, which I thought was successful. I thought I had totally recovered and made plans for 3 hiking trips for the remainder of the year. Within a few months, I began having episodes where an extremity would swell, sometimes appearing quite deformed, and horrible burning pain, inability to move the extremity. It would last a few days then remit. I was diagnosed with RA. I would increase my prednisone and it would usually pass, but before I went to the doctor, and got the prednisone, the "flare" would pass in a few days using ice packs and heat packs alternately. I still had quite a lot of pain, but I felt like I was at least being proactive with the ice and heat. Now, I find heat sometimes makes my pain even worse, feeling like pouring hot water on a sunburn.
I questioned the RA diagnosis for years, because what I have been experiencing, is more than joint pain. Frankly, I have difficulty answering the questions regarding morning stiffness because I feel I am stiff always, and I feel the pain is present always when I have a flare. Winter is horrible for me, so weather does in fact change this. I know that I have RA because it is lab confirmed. Does RSD remit and flare like RA does? Is it affected by changes in weather?
When my RA flares, it can affect my hands, my feet, my knees, my hips, a finger, a toe. Sometimes there is a defined area of swelling, redness, and heat. Sometimes, it affects the entire extremity and cause nerve pain. For example if I have a flare in my shoulder or wrist it can result in the pain that one feels when they hit the funny bone.
My first RA flare hit me after a 3 week hiking trip in the Sierra mountains. I am not a "couch potato" and while pain is a major factor, the lifestyle change has negatively impacted my life. I'm just not sure which demon I am fighting. I wonder if I caused the RSD by pushing myself to exercise an RA flared extremity, or if the RSD was there even before the RA. I guess it really does not matter. My main question is: Does RSD remit and flare like RA? Can the limb return to normal after the flare? Because that's what I've got. A limb that can go from perfectly normal and change on a dime, increasing to twice the normal size, immobile, painful beyond comprehension in a matter of hours or days?