Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 01-18-2016, 03:35 PM #1
zinnia zinnia is offline
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Join Date: Nov 2015
Posts: 126
8 yr Member
zinnia zinnia is offline
Member
 
Join Date: Nov 2015
Posts: 126
8 yr Member
Default What next?

I really would like to get off of Gabapentin. What next? Neurologist who comes to our small town hospitol does not really want to treat me, RSD is not his thing, even though he knows about it??? I have RSD in my right foot. Been a year now.

Foot doctor was the worst! I will not even share that with you. Although he is the one who thought it might be RSD??? He is the one who initally put me on Gabapentin 800 4Xday . All I want is some help. Something besides "It is not broken".

The family doctor is a nurse practicioner, she was very kind and sympathetic. Had no idea what to do. Take some Ibuprophen. She is probably my next stop.

Physical Therapist had never treated RSD, so did not go there. They did give me a walker to use. I am doing mirror therapy on my own. Something they had never heard of. big sigh

My question to you is what are some options, living in a small town, not able to go anywhere? I am on medicaid. Need a little education before my next neurologist visit next week. All of the weight gain,brain fog, etc, from the Gabapentin, is no longer acceptable to me. Yes it has helped me to get back on my feet, which was my goal, lessen the pain SO I could start the long, long trail to walking on my own. Got out of bed, then wheelchair, walker, cane, hobbling a little farther down street each day, then.......... good bye cane! :-) Hmmm I have come a long way.

My gait is not great, lol, standing very long is painful, still have to put my foot up. Have learned how to do everything in stages, and then rest. I think I can, I think I can.......yeah I did it!

Amitriptaline 50 mg has helped with mood and sleep, pain if better in morning. Ibuprophen 800 mg helps some, only taking it when needed.

Doctors can sure be not helpful. I can sure see the need to educate ourselves. Nope not going on Lyrica. I understand there is a lot out there, which can lead to confusion. Thank you for reading, I am so glad you are here.

gratefully
zinnia
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