Quote:
Originally Posted by ali12
Hello and Welcome to Neurotalk! I am so very sorry to hear that you have RSD and hope and pray that you find something that will help you and ease your symptoms real soon! 
I have RSD in my left leg and right arm, I developed it in March 2007 when I was 12 years old after falling down some steps and spraining my left ankle. It took me nearly 5 months to get an accurate diagnosis and I was later put on some medications that unfortunately caused my RSD to spread!
The good thing for you is that you were diagnosed really quickly. Treating RSD quickly is SO important whilst dealing with RSD and my Pain Management Doctor told me that the best chance of reaching remission is if your RSD is caught within the first 3 months as that is when the pain is "Sympathetically Maintained". After 3 months, the RSD goes to being "Independantely Maintained" which means that treating it is harder.
You are doing the right thing by touching your leg. I know it is really painful and you probably don't want to do it but that is one of the most important things you can do!! For the first few months, I didn't touch my foot at all because it hurt too much and I couldn't tolerate the pain and the allodynia spread quite a lot!! It took me about 6 months to try and learn to touch my leg and even then I didn't want to do it but I now realise that I NEED to do it in order to try and get me better.
If you have any questions, please don't hesitate to ask me - I am more than happy to help you if I can and I know how hard and lonely it can get at times dealing with this awful disease.
I really hope you find something that helps relieve your symptoms soon and I am keeping you in my thoughts.
Love, Alison. |
Alison,
Thank you so much for responding to me! Yes, I FORCE myself to NOT wear a sock at night so that my foot rubs against the sheets (and the apparently not very soft coverlet, I now realize). I toss and turn in the evenings anyway so it gets plenty of desensitization. I have also worked alone to force myself to walk, walk without limping (slowly) and go up and down the stairs "normally". It is painful every step I take, but I am determined to deal with this NOW in the hopes that it will not spread and cause more problems LATER.
My first injection is tomorrow. I AM very fortunate to be diagnosed so quickly and decisively by three different docs in the first two weeks after symptoms started. I hope for the best with this injection tomorrow, but am prepared to take it all one day at a time thereafter. Of course I hope for "remission" (we need a more accurate term for that in the case of RSD), but am simply grateful that I can WALK at this point. So many other people on this forum have suffered far more and far longer than I have. I've already told my hubby that if something ever happened to me, I would want my body donated to science to hopefully help unravel the mystery that is RSD and to help other people from suffering in the future.
You and I had the exact same accident that sparked all of this. I, too, fell down the stairs and sprained my left ankle (the end of October '08). It didn't heal properly, I was diagnosed with a ganglion cyst on that ankle (which it ended up being a fascial tear of the muscle instead), and operated on December 3, '08. My symptoms began 3 days after my surgery.
You are a very sweet, wise young lady. I commend your diligence to keep in touch with this forum as well as your insight and motivation that you offer to others here. You are truly a blessing!! Best wishes to you for continued improvement!!