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

les2024: I can "hear" your strong energy via your post! Gracias for responding/sharing.

I've taken cyclobenzeprine for actually a few decades now, for fibromyalgia. Does nothing for the "new pains." Won't touch Lyrica, Cymbalta, etc. since those and others affect me intensely. Same with morphine, codeine. But I am not a martyr, so yes I proactively seek other means to help myself, including prayer, light exercise and aim to keep body parts limber/functional. But I also know when to just "let go" and allow myself to veg and rest, to give body a chance to heal and for me to recoup some energy and soothe the soul.

And you are right: CRPS is indeed difficult for others to comprehend because there is nothing "visibly wrong" with the person. Same goes for fibromyalgia and other draining conditions which create the absolute need to stop, lie down, rest/sleep, etc.....Thankfully, my husband does "get it" . It's difficult for me as well because I've always been active, involved, juggling several activities at once. Took me a while to accept that I had to "pare things down" but yet remain active.
One's priorities do evolve over time, that's for sure.🤔

Question for your Doctor How does your body have both fibromyalgia and CRPS?
Watch Dr. Phillip Getson on UTube . I have done everything he said to do and I was able to go back to work as a nurse full time. Functional medicine helps your body heal by finding what’s wrong and fixes it. They don’t put you on meds. Please look into Dr. Getson he knows CRPS.
I have had CRPS for 23 years.

Fibro was diagnosed over 3 decades ago, although I had been feeling the classic markers for a long time prior. I raised 3 children, earned three degrees (including masters), and taught full time while coping with fibromyalgia (and let's not forget depression and the nasty impact of antidepressant drugs). Not a martyr...just dealt with what I had to do at each stage of our lives. Cyclobenzeprine has been my friend for decades. It works well enough for me, considering all the other things on my plate (including pains imposed by polymyalgia rheumatica). Rheumatologist had included amitriptyline, and I did stay on it for a couple of years or so, and combined with the cyclo I slept well and symptoms were not bad. But the amitriptyline eventually caused nasty, scary nightmares, so I got tapered off it. It's one of many meds that my body does not tolerate. Hot showers feel so good and do help with the fibromyalgia (and other pain sources).

CRPS resulted in left ankle/foot/leg from horrid fall in June 2021. Seriously intense burning nerve pain, 24/7 and ranging from Pain Scale 7 to 9 out of 10 (although at times was more of a 15 out of 10!). It was hell indeed.
I've been receiving PT with my incredible therapist on areas affected by CRPS since December, and I do the exercises at home also. Has been very effective! Still have CRPS nerve pain but for past 2 weeks has been a blissful Pain Level 5-6. Yes, blissful compared to what I'd been enduring. That pain level is so much more acceptable to me! Still have burning nerve pain but does not worsen as day goes on.

So you and I have both lived with pain for many years...tells me that you really do comprehend what I've been through (and continue to do so).
I'll check out Dr. Getson on UTube. Mil gracias for the info.🌺

Look at the definitions of CRPS and Fibro. They are the same. You cannot have CRPS to your hips and then it changes to Fibro. Give me a Fu#!^%&ing break. When a doctor looked up from his Ipad and said I have fibro in my back. I wanted to threw his Ipad across the room and tell him to look at my face when he spoke to me. I'm a nurse I have had CRPS for 23 years. I have done everything there is for CRPS. 49 sympathetic blocks, every med they could think of and a few meds almost killed me. Physical therapy until I was black and blue as they tried to get my myofascial to release. What has helped me the most is Osteopathic manipulation, NO gluten or dairy, NO processed foods, NO!!!!!! stress is huge. Please watch Dr.Getson. I also wish I had the money to go to The Spero Clinic

Calmar pain relief with scrambler therapy
Dr . D’Amato
I’m sorry I can’t post a link because I’m a new member.
My sister has CRPS, this is something she was looking at.
Keywords:
Calmar Pain Relief.Scrambler Therapy,Damato,CRPS
Mayo Clinic also has info on Scrambler therapy for pain associated with cancer.
Hope this limited info helps.

Hi @platapuss, welcome. Allow me to help out and post the link I believe you are wanting to share with @faithwalker007 for treating CRPS:

Dr. D'Amato and Calmar Scrambler Therapy:
https://cprcenters.com/about-2/meet-dr-damoto/
Also, Mayo Clinic - Chronic Regional Pain Syndrome:
https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/diagnosis-treatment/drc-20371156
And here is a PubMed article on Scrambler for chronic pain:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4973603/
Platypus, how has your sister been managing her chronic pain from CRPS? Is she considering Scrambler therapy?

How are you doing now? I am in RI.

I can understand the palpable anger and frustration generated within your post. And while I do not have a nursing degree, in my youth (I am now 75), I did work as a medical assistant (which did have required courses/training) and as a microbiology lab tech. So I do have a good grasp of medicine, the human body, and related topics.

But I totally disagree with you. Definitions for CRPS and fibromyalgia are NOT the same.

I have dealt with fibromyalgia for decades (a bit over three and a half now more or less). CRPS entered my life after a severe fall onto a concrete floor back in 2021, wherein my entire left side was traumatically damaged. The left ankle developed symptoms over several months, and a year after the fall, I was dealing with 24/7 burning nerve pain surrounding the entire ankle, top of foot, up the leg. Pain level was a constant 7 to 9 out of ten. To say that I was miserable is an understatement. After several doctors entered the picture, my neurologist diagnosed CRPS Type 2, which meant that it was resulting from trauma/damage. NOTHING helped, and I cannot take pain meds, so I was left with a very unhappy existence. PT had not helped the ankle until I found an incredible therapist a short distance from our home who had helped with the knee (after injections from my orthopedist). I agreed to what the Pain Management and amazing podiatrist said: PT for the ankle with this same therapist, trying to make sure that my muscles would not atrophy. Pain doctor and the podiatrist both agreed that PT is essential and instrumental with CRPS. Exercises and manipulative therapy started to release the grip of the horrid pain of CRPS. FOUR months of twice per week sessions, plus my doing exercises at home, has brought the situation to PL 5, sometimes 6, and still burning 24/7 nerve pain but I am grateful for the reduction in what I used to have. I have no false hopes of ever being rid of the situation, and the symptoms do affect the leg, especially since neurologist ascertained that there is nerve damage up the leg, around the knee and into the thigh. My knee suffered tears including in areas of meniscus, and that's another story, but what I'm trying to make clear is that CRPS is NOT the same as fibromyalgia but fibromyalgia can impact on my overall pain in that other areas of my body are then activated. I refused a sympathetic nerve block into my spine due to serious issues in the lumbar spine and hip. Not sorry that I refused it. And my neurologist concurred.

Like you, I am GF, for nearly 10 years and read food labels diligently. No restaurants, no take-out foods. I do the best that I can for myself, but I will never allow anyone to manipulate my spine in any manner. I do as much research as possible on my conditions, thus being able to have meaningful conversations with whichever doctor I choose to see. I cannot take pain meds --- none. When needed, my primary has okayed taking Aleve. I have other (many!) health issues to juggle and cope with. And yes, there are times that I am indeed angered that there is so much pain in my life. But I am not a martyr. I am vested in advocating for myself and cannot accept being a zombie and suffering the dire consequences of the various meds that I was prescribed over the years. I acknowledge that my ankle, leg, and knee will never return to what they had been prior to 2021. And I have adjusted my daily activities along with my outlook. There are many factors that color and define my life at this point and time. It can indeed be overwhelming.

I am so sorry that you are in such a horrible situation. I do commiserate. I hope that you can succeed with locating the medical help that can address your very real pain, and thus reach a plateau of relief. 💖🙏🏽

She has CRPS type 1. We didn’t know if it was type 1 or 2 at the time, we were just researching different therapies. I’ll look for links of the others and edit this post with those.
She’s managing with physical therapy, so far no other therapies or pain meds. She broke her wrist and then CRPS set in 2 months later. Forearm to wrist wouldn't turn, fingers felt like wooden pegs and skin was translucent with minimal pain. It’s been a year slow going working with PT to get back mobility in her hand, still not there yet but improving. She has osteopenia so wanted to avoid rounds of steroid shots which potentially makes yours bones weaker. She lives in London and her Dr. caught the CRPS early and got her on PT right away.

Perfect, thank you!