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Old 11-26-2012, 09:48 AM
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catra121 catra121 is offline
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Join Date: Jan 2010
Location: Illinois
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catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
15 yr Member
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I'm not sure that I can help with any of the specific questions you asked but I can tell you that after my RSD spread I decided to go off all medications except Lidoderm patches and clonidine patches. No more Lyrica, no Cymbalta, no ultram, no Mobic...all pills stopped. I went cold turkey. However...in my case the mix of meds were contributing to serotonin syndrome which I had as a result of all the meds...so the relief in the symptoms of serotonin syndrome probably offset any ill effects I would have had from coming off the meds.

It's not easy dealing with the high pain levels without meds...but I am much happier for it and feel like I made the right decision for ME. My mood is so much better and once I went off the meds everything seemed to start going in the right direction for me. I got a portable TENS unit to help with the pain, I dedicated myself to daily physical therapy exercises (had at home physical therapy twice a week for a while which was great), and I worked hard to find alternative treatments. I went onto the 4 Fs diet which helped with inflammation. I took hot baths with Epsom salts once or twice a day. I got a portable ultrasound heat device. Basically...I took control of my own treatment.

My doctor was great...at least the one I had while all of this was going on. She worked with me on the treatments that I wanted to try, made recommendations about other things, and helped me reach the goals that I had for myself. There was no agenda on her part...it was really a partnership and I am so grateful.

I still have RSD, still have horrible pain every moment of every day, but I got myself out of a wheelchair and back to work...and I am the happiest I have been in years since my RSD started. It's a hard life...especially with the high pain levels on a regular basis and the still constant need to follow through with treatments and therapy...but my life has gotten back to some semblance of normal and I am happy.

So I guess if this is the decision that you have made, then all I can say is commit to it. Know why you are doing it, remind yourself of that when you have difficult moments, and find a doctor you can work with through the process.
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