CRPS - anyone suffering with complex regional pain syndrome

MFR?

Welcome @purplechar, You might want to check out the following discussion on Myofascial Release Therapy (MFR) to learn more about it:
-- Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

I was recently diagnosed with CRPS after a surgeon compressed and punctured my sciatic nerve during hip arthroplasty. I live in South Louisiana and don’t seem to be able to find therapy in this state. Does anyone have any suggestions for treating this condition?

Hi, thank you, very helpful. Wondering if you could elaborate on the implant?? This is a new diagnosis to go with my plethora of others... lost & overwhelmed.. Thanks.

there is a revolutionary treatment called scrambler therapy. PM me and I am happy to discuss.

SCS is a good option for a lot of CRPS patients but there are other treatments as well.

Okay, I am trying this. I have had CRPS/RSD/Hand-shoulder disease for around 4 decades now. That is what it was called. It has had over two hundred different names. I will be 49 this year and my body has been to hell and back three times before the 2-decade marked. It started in my right arm after shoveling snow on a side hill and slipping on the ice underneath. The handle of the shovel was shoveled into the right arm pit times 2. That got the Brachial Plexus nerve. By the next morning the entire arm was bent at 90 degrees, purple and ice cold. My mom took me to the doctor and all x-rays where all normal. The doctor at that time told my mom that I was making this all up and it was in my head. Well tack on the around figure of 40 years and now every single nerve is affected. This front coming in is really doing a number. So, I know it is going to have some bad results from the storms. They are saying tornadoes in the areas, and I am afraid the way I am feeling it will happen. Now, here is the question: Can anyone help me to get through this? I know pain but have never had the heart nerves do what they are doing now. I can feel the blood going through the heart and the vessels feel like they are quivering. By the way this will not show up in any test. I have been battling this myself with no help from anyone. I no longer trust doctors and definitely don't trust the so-called pain specialists. I did type in CRPS/RSD support group, but nothing showed up. Put in pain and many groups showed up. I would like to get a CRPS/RSD group started up. With those that have this, pain brings the worse out of us and only one who goes through it will understand what the other is feeling. I used to go to support groups, but when I describe how I am feeling, I am told this group cannot help me. So, I am putting myself out there again. I already know most cannot help when the nerves do want, they are doing now. I just want to know is anyone else feeling this way?

I know what you are going through and I would love the see a CRPS group started. I have posted on different groups at Mayo support about chronic pain and thyroid issues. I am 76 and was diagnosed with CRPS after falling last August and fracturing my wrist. They put a plate in my arm/hand and the 2nd surgery to remove plate caused the tendons to rupture in my hand. My physical therapist picked up that I have CRPS after 2nd week of therapy. No one seems to know much about this disease and searching the internet hasn't helped. My physical therapist, even though she diagnosed it, says it is hard to say what motion I will get back and if pain will ever totally go away. This on top of chronic pain I have is a sh*tshow (don't know how else to describe it)

I completely understand. It gets very frustrating when talking to a physical therapist about CRPS. I know firsthand about this. The problem I have with is no one has lived as long as I have (or at least I have not found anyone yet). The thing that is so hard for anyone to treat this is because it changes from one person to another. I have told clinics that if someone comes to a diagnosis with this CR"a"PS, is to listen to what the person is describing. Then based that knowledge on the "normal" mechanics of the body and both figure out how to treat this. It needs to be an individual approach. Granted it may or may not work, but you need to keep trying. I told my last physical therapist do not need activity to cause flares. What I need is a method to help prevent a flare from happening. Then I may be able to convince the nerves to play nice and work the way they should be. The problem I am having is I have this for so long that my only hope is a nervous system transplanted. Wishful thinking, but I can wish can't I. It is funny when I say this and the reactions to the people I say it too. The thing anyone needs to remember is you are never alone. There is always a support person out there that is sending you perfect air hugs. I have support group on social media, but it is not reaching out to many. I also belong to other social media sites. Granted they are great, but sometimes you need the local support and be able to vent without consequences. There are times where I want to swear, but I have tried to go with I give up. Well, I can't say that anymore. That is until I explain would you rather have me say those words or start swearing? I just had two cervical vertebra that slid out of the place and the burning associate with it is to die for. You could actually see the muscles misfiring. That is what happens with kind of pain. It is not for the faint of heart. Yes, I will swear, cuss and scream. Most of the time this is the only way I can get someone to listen to me. I am not a drug seeker. I am not a wimp. All I want is a few seconds of relief. But I don't need to tell you because you already know. This is why a CRPS/RSD group needs to be separate from a pain group. Not all pain is the same. Not all people handle pain in the same way. However, with CRPS in the mix, it seems we are saying the same thing, we hurt, and it can't be fixed. Just about the only thing we can do is vent, but where can we vent and not get in trouble for doing so? I don't care what someone says about this. I have lived with this for so long that the damage has been done with the entire nervous system affected. Not one nerve is programed to do what it should be doing. Oh, wait, I need to keep this to myself, oops. Yes, I completely understand what you are saying. I wish you the best.

I wish I could! I am sorry to hear that you're going through this. I wish you the best. Hearing your story makes me grateful for my pain. You are a survivor! I admire you!