Dear Confused Mom,

 

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am decreasing my anti-convulsant medication (neurontin) to a lower dose with hopes of coming off of it (since it has been replaced by a newer, more effective medication.)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. 

Meri