CRPS - anyone suffering with complex regional pain syndrome

I'm so sorry about your daughter .
Check this out if you want. She helps some folks .
Ketamine might help. Honestly
I have CRPS in my right lower limb. I haven't found anything to be helpful in multiple vast therapies, both holistic and western and acupuncture, etc.. best of luck

Hi, I'm new on here too. My name is Christine and I've had CRPS for 9 years now. I'm wondering if anyone gets treatment for it at Mayo clinic? There aren't any physicians in Tucson that know about the illness. The Pain clinics here have told me they don't treat CRPS. I'm at a loss. I was hoping to find someone who does Ketamine IV treatment as that's one of the treatments that's supposed to help pain.

I’m in my 4th year of CRPS in my left leg that mirrored into my right. I’ve got a Boston Scientific implant which, once it was set up correctly, has been a blessing. (I had a terrible rep and now have Arian. She’s a saint I swear. My first one was east of where I lived and he was only interested in collecting his paycheck.) In October of last year a temporary Sprint (made in Beechwood, Ohio) was put in the back of my leg and I used it for 60 days. It was GREAT! If necessary it can be temporarily implanted again after 8-12 months. It helped to decrease the issues in my right leg. There are several things I’ve done to help my situation; I’ve stopped red meats; Most protein is fish, chicken, turkey; I am off all refined sugar (oh my gosh that was incredible!!!!) ; for about two weeks I’ve kicked carbohydrates that are man made as verses God made. I eat fruits and vegetables; it’s painful and frustrating but walking helps a lot. If possible, find a support group. I live in NC and just discovered a group in Charlotte. I cried after learning about it! I’m no longer alone. (Fight the Flame). Please consider changing your diet if it’s not like the one I described. By the way…there are sugar withdrawals-hang in there…this too shall pass.

I have had CRPS for 16 years. I have had two spinal cord stimulators implanted - one in 2012 and one in 2018. That helps both feet and lower legs. More recently pain management did a sympathetic nerve block that has helped. I can tell the difference as it only involved one side. I have also been on Low Dose Naltrexone which is very helpful as well.

The first pain management specialist indicated that the would inject my lumbar area in order to block pain in my ankle/foot. But I turned down the idea since it made no sense to me. The pain (due to Complex Regional Pain Syndrome) was originating in the left ankle/foot, radiating UP the leg and into the thigh. But yet he insisted that the pain source was within the lumbar spine and that injecting that area would diminish/stop the pain which he said was actually radiating in the lumbar area...but he said it was radiating DOWN the leg and the nerves in the foot/ankle were responding with the awful pain that at times made me cry from the burning intensity.
I have a different pain management specialist now who is working with me and the fact that I also have serious disc issues. He respected that I did not want a lumbar injection and strongly recommended PT for the CRPS pain in the foot/ankle. I agreed, and continued with the therapist who had worked wonders with the pain incurred from torn meniscus and damage resulting from the same fall that inflicted damage/pain to the foot/ankle. The horrid burning, 24/7 PL 8 to 9 out of 10 that had plagued me for good part of going on 2 years has finally been calmed down to PL 5-6 (out of 10). Still 24/7 but the burning sensation has diminished to 5-6 also. No more shooting pain up the leg as before, just numbing sensation of the leg and lower part of thigh, which my neurologist says is due to nerve damage. So far, I'm good with this, just could not wrap my brain around having a needle into my lumbar area. Will continue with the PT for another 5 weeks, and I do the exercises religiously at home.

Can you tell me how you felt AFTER the sympathetic block to your spine? Any side effects?
Thank you in advance for considering replying to this post.🌺

The injection was fine. My doctor is great at giving long lasting numbing for injections. It stopped the numbing and burning in butt as well as calf, ankle, and foot pain.

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.

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.

Thank you so much for your reply! I asked this on another thread that was discussing it and got nothing. I appreciate you taking the time to respond.

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.