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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

In 2001, I had 3 stress fractures in my foot that quickly turned into RSD. Some doctors thought it was RSD, a couple not. (in hindsight those were the couple doctors who did not know much about RSD.) I ended up at a Rheumatologist to be tested for Lupus, which I did not have, but she diagnosed me with myofacial pain syndrome in other parts of my body which I had for 30 years but no one had been able to diagnose. (Finally some help for that!)

Anyway, she began treating the symptoms of the foot pain along with the myofacial pain... with Topomax, mycalcin nasal spray, flexeril, ultram and on and off rounds of cortisone (sp?) bursts. She was one of the doctors who suspected RSD. Anyway, with time, and gradually beginning to bear weight again, and use it again it did indeed get better. It took over 4 years. But, if I treated it with respect - I was nearly 100% pain free. If I stood on concrete for long hours, or did a lot of driving (affected foot) it would ache again. But, in general, I would say it was in remission. I got to the point where I could once again enjoy my hobby of going for long walks at a nearby nature preserve where the terrain is very rough and uneven and very hilly - and I mean walks of 4 hours.

Then I injured my shoulder, and by the end of that day, RSD set in. I swear it happened that fast. It took a couple weeks for the coldness and some of the other symptoms, but the extreme pain came right away.

About 2 months after that --- the pain returned at about 50% in my foot. It has not changed color or temperature though - just pain returned. It was controlled again though, by starting the mycalcin spray. The spray has not helped my other RSD pain - which is odd. Why it helps the old area and not the new?? Unless it does help, but the new area is so much worse, it is hard to tell it as much.

So --- I believe if I had not injured myself again... my foot would still be in remission. BUT, I also think that once I had RSD, I had it. It was lurking waiting to come out again at the next injury - however I had other injuries after breaking my foot that it did not attack. My RSD is genetically linked. Perhaps that makes a difference.

I am an avid gardener. I am in a gardening "club" online where there are about 2000 members worldwide. In that group, there are 4 people who have RSD or have had it. In two people, it went away within a couple years, more or less on it's own, more than 10 years ago, and has never returned, even though they have injured themselves, had surgeries, car accidents, you name it.

My family doctor has 2 other people in her practice with it. It lasted about 2 years with each of them, and has been gone for more than 10 years in both of them, before they were in her practice. They are now (1) middle aged and (1) elderly -- I am the first "active" RSDer she has seen, and also the first one who is spreading. She is very frustrated by it. But-- I know it went away last time --- so I have faith that it can go away this time.

So YES... there is hope of it going away.

Wow, more than 20 years. Let me ask you, how did you make it through the many years that RSD was not really looked upon as a real disease? It is hard enough today with doctors that barely know what RSD stands for, let alone proper treatments. My first PCP told me he did not "buy in to the RSD thing" and that there were many other things it could be. Funny thing is, he could never name one "thing" that my symptoms point to and other doctors diagnose other than RSD.

It really puzzles me as to why a doctor would continue to muddy the waters when other doctors say it is the most classic case of RSD they have ever seen. How do you find the energy to keep fighting?

You don't need to answer that if you don't want to, I am just curious though as to how others keep going day to day. I had never heard of RSD before I was diagnosed with this.

I must have looked really dumb when the spaecialist told me last year, "This looks like it must be RSD." I was clueless. I am learning more with my research, and trying to get up to speed with all of the benefits here on the boards. I have visited many times, and recently felt it would be better to join so I could ask questions and learn more.

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