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CRPS - anyone suffering with complex regional pain syndrome
Chronic Pain | Last Active: Oct 25 3:58am | Replies (366)Comment receiving replies
I’m wondering how you get a diagnosis of CRPS? I’m 4 years into undiagnosed chronic pain. Have been to 3 Ortho, Rheumatology, pain mgt, 3 different PT’s, and a chiropractor who have all ended up passing me on to someone else.
Replies to "I’m wondering how you get a diagnosis of CRPS? I’m 4 years into undiagnosed chronic pain...."
I was dx by a trip to the ER with burning foot pain. I was at PT at the time and they called the ambulance. It was a result of foot surgery. About four years later I found a pain management specialist who was very familiar with CRPS. I also have Small Fiber Neuropathy dx by two biopsies taken from my leg. It's hard at times to distinguish one from another. My trip with care has been spinal cord stimulators - one implanted in 2012 , another 2018, currently I am on Low Dose Naltrexone and that is taking a lot of pain away. Before that I have had sympathetic nerve blocks that have helped with the rest of pain LDN hasn't helped. The next step for me is RFA of the nerve he blocked.
I too had been without help until the third pain management doctor passed me on. I received a phone call from my current doctor asking me to be his patient. That was 12 years ago. He took me on because he feels everyone deserves the best care and he likes a challenge! I pray you may find that right person.
I got it after back surgery and was diagnosed by my neurosurgeon in 1979 within 12 hours of surgery with Causalgia. I didn't know at the time that diagnosis was difficult but at the time there was also zero treatment. I've basically spent my entire life on crutches. And as I turn 69, it's gotten worse and worse after covid so now I'm looking at a wheelchair. That's feeling very difficult. Agjng, live alone, and spreading CRPS. Scared sometimes.
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Try neurology. I was first diagnosed with allodynia, then my next visit they brought in 2 of the top neurology specialists and they diagnosed me with CRPS type 1… then they referred me to 2 different pain management specialist who confirmed the diagnosis. I would start there because a lot of doctors still don’t even know what CRPS/RSD means or how to help so they won’t do much to help you and most think you’re making it up or it’s a mental thing so they won’t really care. But google neurologist that have experience with CRPS and Chronic or Neuropathy specialist in your area. Hope this helps because the pain sucks.