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.
Hello Everyone
Ive had CRPS for about 18 years now, it ended my Military career. I hate it. I hate it so much. I went through a couple of IEDs and think that is what triggered it. It came in two waves, the first I was almost discharged but while I was in medical hold I started getting better. I was taking neurontin/Gabapentin, nerve blocks ( they where ok) but therapy made things worse. I was thankful and asked not to be discharged. So they gave me chance and assigned me to a new unit for monitoring to see if I could pass PT test and so forth. I trained really hard and did what I needed to and asked to be deployed with that unit. My career was back on track went through an IED about 4 months before our return date and boom, my right hand started burning with numbness. I was scared of my hand symptoms more than anything else and went to the DR and requested the neurontin. 4 months left I was not going home, so I dealt with it. It was getting the point I needed help putting gear on but I was still able to perform my duties and I did. Our Platoon leader sent me with the first group back home and in 30days my life changed. It was in my right arm and both lower legs and the pain was uncontrollable. I had an upper and lower Medtronics spinal cord stimulatior put in at Walter Reed to help.
I get up in the morning around 4am. I have to sleep sitting up and cant lay down.
I use two buckets full of water, one with warm water and one with cool water. I alternate these every 5 mins for 20 mins.
Then i do modified flexes I have developed after trial and error. This is like a workout to keep my muscles active.
There is a pool in our subdivision I go to a couple of times a week.
I have very very bad heart burn that feels like its in my chest sometimes.
I still take Gabapentin and still have my stimulator, but I will need a new unit soon and Im worried about that.
You cannot describe to anyone how much this stuff hurts in many ways besides pain.
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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.
Hello Everyone
Ive had CRPS for about 18 years now, it ended my Military career. I hate it. I hate it so much. I went through a couple of IEDs and think that is what triggered it. It came in two waves, the first I was almost discharged but while I was in medical hold I started getting better. I was taking neurontin/Gabapentin, nerve blocks ( they where ok) but therapy made things worse. I was thankful and asked not to be discharged. So they gave me chance and assigned me to a new unit for monitoring to see if I could pass PT test and so forth. I trained really hard and did what I needed to and asked to be deployed with that unit. My career was back on track went through an IED about 4 months before our return date and boom, my right hand started burning with numbness. I was scared of my hand symptoms more than anything else and went to the DR and requested the neurontin. 4 months left I was not going home, so I dealt with it. It was getting the point I needed help putting gear on but I was still able to perform my duties and I did. Our Platoon leader sent me with the first group back home and in 30days my life changed. It was in my right arm and both lower legs and the pain was uncontrollable. I had an upper and lower Medtronics spinal cord stimulatior put in at Walter Reed to help.
I get up in the morning around 4am. I have to sleep sitting up and cant lay down.
I use two buckets full of water, one with warm water and one with cool water. I alternate these every 5 mins for 20 mins.
Then i do modified flexes I have developed after trial and error. This is like a workout to keep my muscles active.
There is a pool in our subdivision I go to a couple of times a week.
I have very very bad heart burn that feels like its in my chest sometimes.
I still take Gabapentin and still have my stimulator, but I will need a new unit soon and Im worried about that.
You cannot describe to anyone how much this stuff hurts in many ways besides pain.