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 09-27-2011, 08:38 PM #10
kathy d kathy d is offline
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kathy d kathy d is offline
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Join Date: Nov 2006
Posts: 327
15 yr Member
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Hi Tomcrps,
I am so sorry you have to feel the pain you are now feeling in your chest. Unfortunately, I have dealt with exactly what you are speaking about. I had a Lidocaine infusion several years ago and took Mexiletine afterwards for years. So I hardly felt the chest pains as you have described because of the Mexiletine. Last year I went off of it during my Ketamine infusion and about a month later had my first booster of ketamine. Well with each hour afterwards the chest pains grew so bad I thought for sure I was having a heart attack (and could not breathe either). Was ambulanced to hospital and all ekg's and bloodwork are normal??? It was strange but since that time I feel exactly as you do too. It feels like an elephant is sitting on your chest! And the burning pain is horrible. I agree. After about another month of this I went back to my holistic neurologist in horrible shape and worse than before ketamine. She has given me iv's of natural vitamins and minerals (RSDers need more than others esp the minerals). It is now a year next month of doing this iv vitamins and I can honestly say it is the only thing (besides God) that has helped me out. I have gotten off ALL opiods (used them for over 5 years) about 3 months of doing so and have not had the bad burning pain as I did prior. What a Godsend it has been for me. I still have burning pain everwhere (full-body for years) and when I am real tired or storm is coming in I have increased burning pain everywhere and joint pain more but nothing like it was before. I think you should try to find someone in your area that will do this iv of natural vitamins. I am headed there tomorrow and I am now doing it only once a month now. It is so great and natural for your body. I would never have the ketamine done again because it changed my body in bad ways (but it did lower the pain...but took alot out of me). I am almost off all medicine now and with each month feel much better. It was a horrible experience I pray no one else ever goes through. Good luck with everything and keep us informed of your health. Two things I have noticed about the burning pain is: 1-meditation and breathing do help to lower the pain. It takes practice and lots of time but at times is the only thing to help me lower the pain. 2-Trying to stop sugar helps keep some of the pain away too. It was hard for me to do as once in awhile I have a sweet tooth but I did notice lower pain when I stopped eating my sweets and tried to stay away from sugary foods.

KittyC said "I wish I had a doctor like Dr. Schwartzman on hand so I can find the perfect treatment for my RSD." I had to chuckle at that one (no disrespect to you) as I have been to over 40 or so doctors since this "journey" began and I can honestly say there is no perfect treatment for rsd. It is up to the patient to find what works for their own body and to find a compassionate doctor to help you through your journey. And a good dose of humor and lots of prayer helps too:.)
Take care,
kathy d
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