Want to talk with others. Have you found relief from CRPS?

I also ended up with CRPS after a few years of horrid pain from post herpetic neuralgia which includes intense sensitive skin. I guess the rest of my body wanted to be even. I have pain no where the shingles were. I am going to a surgical consultation in Nevada on Monday. I am rounding the corner into year six. The more medications , treatments, surgeries I get, seem to be making me worse. The surgical consultation is for a neurectomy. Newly discussed. You can look on youtube.

CRPS crept into my vocabulary a year after a severe fall in 2021, which caused trauma to my entire left side of my body, from toes to shoulders....The first foot orthopedist was a waste of my time and impeded having gotten proper diagnosis, so I dropped him and found my own team of doctors not associated with the medical group to which we belonged at the time (but have been dropping doctors one by one). The MRI that was ordered by that neurologist shed a great deal of light on why my ankle was still frightfully painful and showing inflammation and swelling around the ankle, top of foot, and the nerve conduction studies revealed that I had indeed incurred nerve damage to those areas, including the very end of the tibia, the area that seemed "dead" and carried the weight when I walked since the rest of the foot was in constant nerve pain. The diagnosis of CRPS Type 2 came from that sagacious neurologist in June '22, one year exactly to when the fall occurred. Constant, high level burning nerve pain along with hot electrical jabs up the leg and into the knee which would then set off pain in the meniscus torn areas and up into the thigh. Yeah, real fun times! What I've learned through intensive research is truly sad: There is no "cure" for this condition, only drugs, injections, etc., none of which I want and most of which I cannot take due to having had hallucinations, etc from them. Now I'm trying to locate a PT center where at least one therapist is knowledgeable and experienced with providing therapy to people who deal with CRPS, so as to avoid having more harm than good. I attended two centers that I had to leave due to overzealous therapists who indeed inflicted pain. I spent nearly all day this past Friday calling ALL the PT centers within a 20 mile range of where we live and not one had such therapists, but they did offer "...to help as much as possible." Sigh! I don't want a nerve block in my spine (what 2 pain management doctors offered), and no more shots into ankle/foot/toe bed. Those were horrifically painful and did nothing for me.
Isn't it amazing how other countries (like Italy mentioned here, and Norway where our son-in-law originates) have treatments/methodologies that here in the US there is little to no knowledge about and/or just don't accept and implement? By the way: the original foot orthopedist had pretty much dismissed my pain, saying to "Just move on with your life..." Real bone-head..
Taking a break this week from searching and googling, and focusing instead on the joy that we'll have our daughters and grandchildren here for Thanksgiving. My podiatrist gave me an ankle brace and a compounded pain balm, which has been helpful, and I do sit by the island or kitchen table while prepping food, etc. And I'll elevate the leg as much as possible, with everyone helping out.
Happy holiday to those of you who celebrate Thanksgiving.🍗😊.

I will not do anything that punctures my skin except needed surgery with a block to prevent new pain tracks from the site to my brain, or IV for say ketamine if it was financially accessable, or MRI dye - which gave me a huge scare last year when she hit a nerve. I have CRPS from the hips down, bowel, now ribcage and layrx from covid spread. I was scared to death to lose my right arm.

The only thing I could think to do was one ketamine treatment that I ended up paying for out of pocket - after hitting the nerve with instant scary pain in my hand, I couldn't get her to take the needle out until I reached over to take it out myself. She wouldn't get the radiologist, got very angry with me, and in the end, was actually mean and nasty, refused to take me to the ER to at least have a paper trial in case! I think she was afraid for herself than she was for me. It wasn't her fault, its just a thing (except how she chose to treat me.)

Every puncture, esp when we now have central sensitivity, is risky according to Dr Getson, and rightfully, he says scares me.

Just my thoughts and mind you, 44 years ago, when I was 24, I DID do all those things. I know that desperation very well. Follow your internal guidance. We have no regrets that way.

My goal in life now at 68, is to look at all pros and con and know whatever I do with much contemplation was the right move for me with the information I had. NO REGRETS. NO self bashing after. However it worked out, I did the best I could at the time. Then "what next" if it wasn't perfect. But I remind myself it CAN be worse. People say it can't possibly get worse, but it can. Namaste and Good luck.

@mam14 Sounds about right ,They still don't know what caused it but just order another Fibromalic I've made them rich whoever made this product .Now I have a sciatica problems and vertigo problems. It's fun getting old

How do you get a CRPS diagnosis? What type of dr do you see?

Renee , I was just recently told that due to chronic back pain, my central nervous system is compromised and sending pain signals to my lower legs belie my knees. I can’t stand fabric touching them which is so difficult. Would the spine stimulator help with this. My legs also cramp and have deep pain down my shins.

My neurologist diagnosed the CRPS in my left ankle/foot/leg, after having gone through several steps. He reviewed the nerve conduction study performed by a certified neurologist from my prior medical group. Also reviewed the MRI of the area because the foot orthopedist that I originally saw had actually REFUSED to order one. His reason: Not indicated, although there was pain, swelling, affecting my gait and already compromised balance issues. I became angry, and in a controlled voice (trust me, it took a great deal of self-control!) I demanded he do SOMETHING. He acquiesced to a nerve conduction study and wrote the script, although he did so with a cynical "I doubt that it will reveal anything." He did not call with the results, so I made an appointment, at which time he told me I should just get on with my life and stop looking at what I considered to be "impediments" to my resuming activities that I had previously enjoyed. I dropped that orthopedist for his refusal to recognize my pain and failure to do anything nearly 6 months after the serious injuries and the increasingly compromised ankle/foot/leg...
I sought doctors from a different medical group, and the new neurologist (Dr. S) performed a thorough exam of the entire appendage, and also verified that I had nerve damage that radiated up the leg. He also affirmed that the discoloration of skin bilaterally and on top of ankle was an indicato of CRPS, along with the swelling (still there, 1 yr after the injury). I had received a consult with a foot orthopedist in private practice, and he also performed extensive examination and injected both sides of ankle. That did not help, just hurt really intensely. So after all of that, Dr. S. made the diagnosis of CRPS Causalgia (which occurs after a distinct nerve injury). I had had PT (ordered by my primary, shortly after the fall) and it had not helped. To cut to the chase: there's more to my CRPS journey, but I've addressed your question. You can find more info on the Mayo Clinic site ("Complex regional pain syndrome"), which explains symptoms/causes as well as diagnosis/treatment. There are other sites online that are reputable. I use ONLY sites from recognized and respected medical universities, hospitals, and organizations. I also like medical journals, including those from the UK and Australia. Very informative, and helped me to better understand the "why" of the physical and emotional-psychological components of this disorder.
Hope this helps. CRPS is not an easy road by any means. It will be 3 years come this June that I incurred the injuries, and I'm still dealing with aftermath to my left leg (yes, the entire leg including the knee and thigh). And my pain management doctor sees evidence that the CRPS has "mirrored" to the right leg as well. Yeah, it can get "funner and funner."

Best of luck to you. Feel free to reach out if you have anything you'd like to share, or any questions. 🌺

I recently found this FB group for CRPS & neuropathy

Keep on trucking through the pain and try to do what you can to stay active. I had injuries in 2015 and ended up with two broken feet, legs and body crps spread. (Stemmed from right foot) My PT person was a life saver and the one who was able to identify the condition due to her graduation paper was on this particular condition,
View yourself as a a warrior because you have to keep plugging along. I finally just started to do daily walks pushing through the pain and I used to have a hot tub or jacuzzi I could use at night. Lots of Epsom salt baths…. That helped.
Using a swimming pool is also very good to work on trying to use your muscles.

I had to take muscle relaxers and sleep aid to battle the spasms and Charley horses.

I was prescribed Lyrica for years and didn’t like it, I didn’t use the fentanyl patches due to being chicken. Opioids make me ill so that wasn’t an option. I was worried about progression so I didn’t do many of the drastic things for nerve blocks.
The Lyrica made my bp high.

I can’t say things happened over night but eventually I have a better handle on this awful condition. It is always there to be cautious about it wanting to take hold.

Keep moving because when you don’t it gets worse it seems to me. Keep working yourself on range of motion and follow your instincts.

This is difficult for the entire family because it is hard for people to understand…
Hang tough!!

Thank you for your post, Loralei. Can't access as I intentionally don't belong to FB.