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Any advice for CRPS?

Chronic Pain | Last Active: 34 minutes ago | Replies (10)

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Profile picture for grannyzoo @grannyzoo

@maggieaz I recently went into REMISSION after almost 6 years with CRPSin both legs and feet. I tried gabapentin and that did not help me. I then followed a group in the New England area and learned one heck of a lot from them. I watched my diet. I stopped eating red meat, for protein. I ate fish and chicken. No fried food. No alcohol alcoholic beverages. I completely stayed away from SUGAR which causes INFLAMATION. Getting off of sugar did cause a withdrawal that lasted for about two weeks. What I did to ease that is I ate a piece of candy one time a day for seven days and then went to every other day for seven days and then I was completely off of it. I ate fruit, fruits and vegetables. I also eliminated carbohydrates and went gluten-free. I too have a an implant-Boston Scientific implant in my lower back. It is a godsend. It allows me to get MRIs where most other implants do not. I found a fantastic rep in the Charlotte, North Carolina area, with Boston Scientific, who has been extremely helpful with Adjusting my implant as I needed it done. Drink lots of water and keep moving. I know that keep moving part is tough but just do it. Do not caveinto this disease. I found an excellent Pain management doctor in, Charlotte, NC, who has given me me about five epidurals. I most recently have found a wonderful physical therapist who has been excellent with me. I do not believe in medications so I don't take them. ( I was at one time misdiagnosed with Parkinson's when it turned out I had had a mild stroke in the part of the brain were Parkinson's forms. I took the med…OMG! The Cleveland clinic put me on the Parkinson's medication and never ran an MRI. The medication was awful! But I digress.) Bottom line is I don't trust medicine now. I suggest you go on YouTube and locate this group in New England that has a very strong support group for folks with CRPS. They are a wealth of knowledge. I also suggest that if you're going to someone that's in Pain management and they herd you in like you are cattle that you continue your search for someone that will listen to you and address your individual needs. I completely understand your story about searching for a doctor that knows how to address this terrible disease. I strongly suggest that you go to a teaching hospital. I went to UNC. Oh my gosh, they were very thorough. I am 74 years old and thrilled to death to be able to walk again. I hope and pray this helps you! Keep searching for the help you need!

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Replies to "@maggieaz I recently went into REMISSION after almost 6 years with CRPSin both legs and feet...."

@grannyzoo @maggieaz I also have gone gluten free and cleaned up my diet (for gastroparesis sake) - fruits, veggies, clean meat, healthy snacks and no processed food (I'm not willing to give up coffee lol) - and that has given me longer "tolerable" windows to eat and not feel as bad, but personally, it has not helped me any with the CRPS pain (but that's only me - clearly, it is working for others, as listed here above, and that's WONDERFUL!). I live in SC area, and my BS reps are also great (my implant also allows for MRI's, but only at one location). I wouldn't trade them for anything. I would second going to a teaching hospital - there's a big one here near me - and my friend has also been to Duke and loves it. I am both hopeful and excited that you will find the relief you need! Good luck!

@grannyzoo
Thank you for sharing. I will try to find the group that you mentioned. I am assuming this is an online support group??
I appreciate your input and caring.