RSD Helpline Support Group

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Have any of you participated in Clinical Trials? If you have, do you have any suggestions, recommendations, etc. My daughter is thinking about participating in a clinical trial (only after consulting with her physician). The place that is performing the clinical trial has sent her all the information about the risk involved.

Have you also found with your RSD, that you have a lot of other things going wrong with your body? My daughter all of a sudden had to have 4 wisdom teeth pulled. She had to have her gall bladder removed and she had a LEEP procedure done. I am thinking that all of these things are related to the RSD in the fact that before she had RSD she was in pretty good health (she had the fusion of the L4-L5) but that was due to an accident. Now she is suffering from extreme stomach pain and they are thinking that she either has a cyst on her overy, scar tissue build up from the gall bladder surgery or inflamation of the intestines. I cannot help but believe that her immunity system is getting weaker.

I can only speak of my personal experiance altho I have heard from many RSDers that they too have a compilation of many other problems. I have had RSD in my upper body ,arms and hands for 8 years this month, I was 46 when a carpal tunnel surgery on my left hand started the burn. I had 5 prior nerve surguries on my elbos and hands(some a second time) I think thats why it spread so fast...lots nerve damage. Well, since then I have developed sleep apnia, I was very physically fit then, nnow I am 70 lbs over weight mearly because I cannot burn any calories because minor use of my arms bring on severe pain..flreups. I have developed a spinal disc deterioation condition that has really accelerated and terribly painfull because the discs are so far gone and entrapped nerves all up and down my spine. This year I barley hyperextended my knee and it resulted in both lungs and right leg full of blood clots, I almost didnt make it thru that one....one day a swolen knee and a few days later woke up in the middle of the night and if felt like I was being stabbed in the left lung with every breath, I have to take blood thinners the rest of my life. Not moving around very much and gaining weight was the cause of the knee injury and everything that followed it! Yes, I started have trouble with my teeth too, they tell me its because the meds im on cause my gums to dry right at the tooth causing accelerated decay. Ive had pnumenoia for the first time in my life last year. Theres more but I dont want to write a book. For me, I have had lots of other problems too, but that really dosent mean it will do that to everyone as we are all so individule in our genetic build up. I will be 55 next week and male, thats a lot different kind of person than a young woman

I am a 28 year old female and have been living with RSD for over 5 years. I don't think I'm actually a subject of a clinical trial, but I am receiving the drug being used in the clinical trial without all the other junk. (My health insurance seems to be willing to pay for this "experimental but medically necessary" drug.)

I have agreed to this procedure since I feel I had no other options. In order to receive this treatment, I have to drive over 6 hours away, each way, for a 2 day procedure. Since the procedure is done in the doctor's office over the two days, I have to pay for a hotel for 2 nights. Despite all of this grief and aggrevation, I can finally say after 3 months of this that I believe it has lessened the pain greatly for me. I have been able to get off the pain meds (oxycontin) which I had been on for over 3 years, am decreasing my anti-convulsant medication (neurontin) to a lower dose with hopes of coming off of it (since it has been replaced by a newer, more effective medication.) My flare-ups have decreased, as I used to have 6-7 severe flare-ups per day but now only have 1-2 per day. I am definately still in pain, but having fewer flare-ups per day has helped me enormously. It has helped my emotional stature and decreased my daily anxiety since I am not living in as constant fear of the flare-ups and when the next one will hit. My relationship with my husband has improved as I am able to spend a little more time with him and not depress him with my pain.

I feel that I have tried just about every other procedure available to me in order to decrease my pain. I've gone through all the nerve blocks, spinal cord stim trials (twice!), medications, TENS units, etc. When I read about this procedure/clinical trial at the beginning of the year, it brought back some hope that there might be another procedure I can try to see if this awful syndrome will go into remission. I haven't reached remission yet, but I feel much more positive about my life (with RSD) than I did prior to this procedure. I used to agree that clinical trials were only for rats, but when your back is against the wall and you're desperate, I guess you can be willing to try anything. At least I am. Call me a rat if you must, but I'm a rat living with less pain.

I hope this helps you.

Important Announcement The MSN Groups service will close in February 2009. You can move your group to Multiply, MSN’s partner for online groups. Learn More
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