Thanks for sharing your story. You are an inspiration to me. I hope you are doing OK with the relapse and that it soon goes into remission. Gentle breath of a hug to you!

Mara



QUOTE=KathrynL;883703]My RSD is back, but I was in remission for eight years, so I can tell you what I did to get there.

I was diagnosed with RSD in my left foot in 2003 when I was 22. I went hiking the week before my college graduation. The pain started in my big toe, but quickly progressed to all my toes and then my entire foot. The docs did multiple xrays which showed nothing. I had multiple blood tests for lyme, lupus, rheumatoid arthritis, HIV and gout--all of which were clear. My foot was about 3 times the normal size, and incredibly painful. I couldn't walk without crutches. It was clear something was wrong, but nobody could figure out what. Finally they tried a bone scan. My entire foot lit up like a Christmas tree.

I was sent to a rheumatologist and looking at the results of all my tests, his exam, and my bone scan he diagnosed me with RSD. I had all the classic symptoms: swelling, pain, hypersensitivity, temperature changes (which I couldn't tell) and some pinkish discoloration.

Now my story gets a little complicated. Originally the theory was that I got RSD from a stress fracture during my hike. However, six months after being diagnosed with RSD, I was diagnosed with Psoriatic Arthritis, which is an autoimmune inflammatory arthritis similar to rheumatoid arthritis, but undetectable on a blood test (you can test for a genetic factor, which I have, but that's not a guarantee you have it). My rheumatologist thinks I had PsA for years before my official diagnosis. Now the theory is that my undiagnosed, thus untreated and uncontrolled psoriatic arthritis caused the RSD. Rheumatoid Arthritis can also caused RSD.

I had RSD for about a year and 3 months before it went into remission. It was one of the worst years of my life. Because I had so much swelling in my left foot, I was immediately put on a large blast of prednisone, about 60 mgs for a month. It was slowly tapered over a 6 month period. I also took neurontin. They tried other similar medications. I went to physical therapy 3 times a week. I didn't notice that the neurontin made one bit of difference. The large blast of prednisone helped, but as soon as they tapered the dose to 20 mg and under, I went right back to being in pain.

Over the next year I took a variety of different NSAIDS. I delayed going to grad school by a semester. Finally in July of 2004 I had two separate sympathetic nerve blocks. The first nerve block gave me relief for about 2 weeks. The next nerve block kicked it out of me completely. Eight years later, the RSD is back in my left arm, but I got EIGHT YEARS of remission. I know I'm lucky for that, since some people never get a second.[/QUOTE]