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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Dear all,

I just joined health boards a few weeks ago but today is my first post. I was diagnosed w/RSD 2 and a half years ago. I had an ankle arthroscopy in Feb of 2001 and starting getting stabbing pains a few months later. I was extraordinarily lucky in that I was diagnosed a few months later. I found at I had nerve damage to my right peroneal nerve and since then, my RSD has spread into the entire lower half of my body.

I guess I am writing to you all because I am frustrated with my progress. I am currently in law school and have been trying to balance treatment with my school work. I have managed to stay in school thus far although I have missed at least 3 to 4 weeks a semester due to RSD.

Within the past few years, I have tried a whole range of treatment options, all of which seemed to either not work or caused me great side effects. Let's see...I was in physical therapy for about 6 months, which helped with the sensitivity but not much else. While in physical therapy, I tried acupuncture, which did not help at all (besides, I'm deathly afraid of needles). I also tried a sympathetic block which caused me to be extremely ill and my pain returned on my way home from the hospital. Since then, I have had 3 epidural infusions. The infusions seemed to decrease my pain at least for a month or two, but everytime I was in the hospital, my blood pressure would drop to extremely low levels and I would leave the hospital with a horrible spinal headache (where spinal fluid is leaking and you can't get out of bed). Therefore, after getting out of the hospital I would have to get 1 or 2 blood patches (where they inject blood taken from your arm into your back) to stop the leaking. I have also had cryosurgery done twice (where they have frozen my nerves in my right foot). This past November, I tried a popitil block (numbing the lower half of your leg in the hospital--it's similar to an epidural infusion). I ended up going into toxic shock in the hospital, where I almost stopped breathing and they had to give me medication to revive me and depressants to keep my from shaking.

So...now I'm back to just taking a ton of medication. Until last week, I was taking 2100 mgs of Neurontin, 50 mgs of Trazadone, 750 mgs of Keppra, 20 mgs of Pamelor, 8 mgs of Gabitril, 15 mgs of Methadone, 1300 mgs of Percocet, amd about 650 mgs of Ultracet. I have decreased many of my medications within the past week because I went into toxic shock again this past week and my doctor got freaked out (by the way, I only way about 90 lbs). Anyways, if anyone has any questions about medications, I've tried most painkillers and neuropathic medications.

I apologize for the long message but I am really frustrated. I am trying to finish my law degree and don't know what else to try as the pain continues to get worse. I have an appointment on Tuesday to see a doctor who does hyperbaric oxygen treatments. I am also considering another epidural infusion, during which my doctor would also give me a ketamine drip or a spinal cord stimulator. I was wondering if anyone knew anything about these treatments or any other possibilities.

I also just wanted everyone to know that I am here for all of you. I just turned 24 years old and know how hard it is to plan your entire future w/RSD in the background. I want to continue my life as normally as I can and was wondering if anyone could offer any advice to me. If anyone has any questions for me, please feel free to respond because although I have only had RSD for a little over 2 years, I have spent these years trying one treatment after the next.

Thank you for your time.





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