Yes, I have had crps for three plus years. I have contractures of my fingers and the pain has spread from my hands to most of my body. I had ketamine infusions for the pain and it worked for several months. It’s a tough diagnosis and also tough for people to understand. I wish you the best!
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.....
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 .
When seeking a pain management specialist, prioritize finding one who treats you with respect and attention, rather than rushing you in and out like cattle. It's essential to keep moving, no matter how much pain you may feel; consider starting water aerobics, especially if you're within the first six months of CRPS. Movement is crucial for your recovery. Additionally, eliminate all sugar from your diet immediately. It is my understanding that the earlier you catch this disease the more likely you are to get rid of it. I wish someone had told me that! Sugar is inflammatory and only exacerbates pain while hindering healing. I recall someone recently discussed a valuable video about CRPS—make sure to track that down. It is on this Mayo blog. Avoid red meats, stay hydrated, and drink plenty of water. No alchol.
Personally, I have a Boston Scientific implant for my back due to CRPS affecting my legs. One area where I’ve faced challenges is finding a neurologist who focuses on treating symptoms rather than just pain management. Search one out. I highly encourage you to seek out a teaching college/hospital knowledgeable about CRPS. My path led me from the Mayo Clinic nurse on call who sent me to the University of North Carolina, (during Covid) and I recommend you do the same. Research institutions that specialize in this disease and pain management, and reach out to them swiftly. Your health journey deserves this proactive approach! This morning I was listening to a UTube with Dr Pardeep Chopra. Look CRPS/RDS up on UTube. these programs are very insightful.Just keep moving and get off of ALL sugar.
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Yes, I have had crps for three plus years. I have contractures of my fingers and the pain has spread from my hands to most of my body. I had ketamine infusions for the pain and it worked for several months. It’s a tough diagnosis and also tough for people to understand. I wish you the best!
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 .
I have CRPS. I am very new to this. My world has turned upside. I have not been able to have any relief. I have tried everything. Nothing has worked.
When seeking a pain management specialist, prioritize finding one who treats you with respect and attention, rather than rushing you in and out like cattle. It's essential to keep moving, no matter how much pain you may feel; consider starting water aerobics, especially if you're within the first six months of CRPS. Movement is crucial for your recovery. Additionally, eliminate all sugar from your diet immediately. It is my understanding that the earlier you catch this disease the more likely you are to get rid of it. I wish someone had told me that! Sugar is inflammatory and only exacerbates pain while hindering healing. I recall someone recently discussed a valuable video about CRPS—make sure to track that down. It is on this Mayo blog. Avoid red meats, stay hydrated, and drink plenty of water. No alchol.
Personally, I have a Boston Scientific implant for my back due to CRPS affecting my legs. One area where I’ve faced challenges is finding a neurologist who focuses on treating symptoms rather than just pain management. Search one out. I highly encourage you to seek out a teaching college/hospital knowledgeable about CRPS. My path led me from the Mayo Clinic nurse on call who sent me to the University of North Carolina, (during Covid) and I recommend you do the same. Research institutions that specialize in this disease and pain management, and reach out to them swiftly. Your health journey deserves this proactive approach! This morning I was listening to a UTube with Dr Pardeep Chopra. Look CRPS/RDS up on UTube. these programs are very insightful.Just keep moving and get off of ALL sugar.