16 Years With CRPS

I am so sorry that you have and continue to suffer from CRPS for 16 years. Hoping they can get your SCS working again. What caused your CRPS?
I am newly diagnosed with CRPS December 2024. I have been to so many doctors for the last 4 years and no one could give me a diagnose. Finally, found a Dr that specialized in cancer pain. He diagnosed me within the first 3 minutes of my appt. It was such a relief to put a name to my pain. I am still trying different things but nothing has helped so far.
As you said there is not much that helps. Hoping you can get your SCS fixed soon for some relief.
Thank you for sharing all your treatments.

It was an injury from an IED in Iraq that triggered this. Something needs to be done about diagnosing people faster. That is the key to beating it, is fast diagnoses and fast treatment. You have to fight, dont let it win. I know its easier said than done, but if you let it take control. It will drain your mental stability.

Thank you for your service. I agree we can't let it win. I also agree more needs to be done with earlier diagnosis.

Watch Dr Getson on UTube. He is a wealth of information. Address your diet immediately as he states. Stop all sugar, it is inflammatory ,as a matter of fact if it is white don't eat it. Sugar, flour and rice are examples. Stay away from red meats. You do need protein but limited to chicken, turkey, and fish. I ended up at a teaching hospital (UNC) and got some relief. I did get a Boston Scientific Implant. Keep moving. there are different stages to this disease as explained on web look up a support group listed under RDS. Hopefully, yours will clear up.

Thanks for the information, but Im already on strict diet and only eat chicken breast as a meat source. No sodas, no alcohol, No smoking, etc..... (Yes, I do cheat and have red meat now and then on occasion) Everyday its just blah meh food. What A life that you cant enjoy simple dang things.
16 years with this and still counting, I think my next move is amputation below my knees. Ive been to some of the best doctors I know off. This right now has nothing to do with diet, the reaction i have is because my stimulator is not blocking pain anymore.

I just had blood work all that crap done and its all good. This thing has been eating me alive for years now. 16 procedures and 13 surgeries and now an upcoming surgery to get this replaced. I know that I can adapt to prostestics, Walter Reed can get me back on my feet. Ive been researching stories and actual statistics with amputations, Ill take 60% chance over this.
Im not afraid Phantom pain, I just want this to go away. I apologize if I sound to direct, I do the same dance with every specialty clinic.

EDIT: Good Grief, I sound like an A..... sorry for that, the day is kinda crappy. Sorry

This is an update, Im going to another DR tomorrow and have a flight to another clinic on the 25th. I took another pic today. BTW this has happened before when I waas doing trials with other units, it should dissipate alot once I get a new Unit. Hopefully

My heart aches for you. I will pray for you to get some sort of relief.

Are your rashes from urticarial vasculitis ? Have you tried acupuncture ? So sorry you are having to endure this. I have had Post Thoracotomy Pain Syndrome for 24 years. I had to take a complete disability from my job. Until a person has been down the road of horrible pain, a person cannot even imagine.

From what I understand, its from the nerves going crazy or something. I never really understood why this happens. I have seen worse cases that really really bad. That is why Im leaning to amputation before this happens, almost all of the cases Ive seen. It starts with blisters and spreads upward to the thigh. There is a guy I communicate with who is a professional athlete now, after he amputated his leg. Below the knee only.

Thank You very very very much for your prayers.