← Return to CRPS - anyone suffering with complex regional pain syndrome

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@craps

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?

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Replies to "Okay, I am trying this. I have had CRPS/RSD/Hand-shoulder disease for around 4 decades now. That..."

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 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!