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My daughter is 40, and suffers from CRPS - complex regional pain syndrome. Took her a long time with many doctors from internists, neurologists, Gastroenterologists, etc - many who thought it was all in her head - but was finally diagnosed with CRPS. it is progressively getting worse and she lives in constant pain. I see where there are finally clinical trials going on around the country for an answer but they are only looking for those in the early stages... not advanced. And yes the only meds available are the opiods and that is becoming harder for those who suffer. It is tragic so many people will be overlooked because of this tragic abuse of meds in our country BUT everyone has different pain thresholds and all are not additive type persons... hopefully more will be done - and thank you for this forum - I am new to it but just maybe Mayo and/or our sharing will bring more information.....
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@pfox Recently diagnosed with CRPS II. It’s been on my medical chart for over 14 years, a new orthopedist explained what it was and since it had been so long I’d probably need neurosurgery. Trying to find medical help is ongoing and almost impossible. Best wishes to your daughter.😢
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I feel so bad that so many people are feeling this pain and not being diagnosed I thank God I was diagnosed immediately . But even with early diagnosis nothing is helping I did Gabapentin a did the nerve block and just finished the travel for the electrodes in the spine . I just don’t understand why the burning is now traveling it was the left arm then was traveling up my neck now it is going down my left side and all through my left leg I feel like I am an FIRE . As the burning begins my skin literally starts looking like I am being burned on the inside it starts changing color and looks like blisters are forming . I have insomnia now to top it off and I literally want to jump out of my skin .