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Complex regional pain syndrome (CRPS) and feeling blank

Chronic Pain | Last Active: Oct 30, 2022 | Replies (70)
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@chuck406

Nearly 21 years with CRPS. Original injury: oilfield accident slipped and fell dislocating my R knee inwards, fracturing it and the ankle. Two years to get a correct diagnosis. Don't give up. It's been a rough road. Have a say in your treatment. Have had every pharmaceutical under the sun including Oxycontin, and refuse these days to take anything (side effects) but Tylenol 3 and only when it gets real bad. I do believe marijuana helps but that's personal choice. New York Hospital for Special Surgery, Scripps Clinic, and Mayo Clinic with at least two dozen doctors in-between. I did have about 8 years remission before it all came rolling back but that's also questionable from self-medicating with alcohol functionally for years. Gave it up for 3 months and only use single malt scotch as a lower tier before T3 pain relief and only one shot to feel two hours of relief. Have a consultation for Plasma-rich platelet injections this October after hours of research into the subject for rebuilding damaged nerves.

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Replies to "Nearly 21 years with CRPS. Original injury: oilfield accident slipped and fell dislocating my R knee..."
paulieoneill4979 | @paulieoneill4979 | Aug 26, 2022

Wow some road can't imagine the battles I do know that my initial injuries stink to say the least with a trimal ankle fracture and complete shattering of my wrist I have a bit more recovery ahead of me till the bones heal in whatever way they the Dr's say is normal truth is I already walk with a limp foot turns blue have terrible stiffness and too boot I believe the crps was in mynllwer half but I was diagnosed in my upper region of the body because the pain was more severe there now I have to go for another emg ncv for the leg already 1 day at a time im trying to keep positive good luck on your battles my friend

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Rachel, Volunteer Mentor | @rwinney | Aug 26, 2022

@chuck406 Hello Chuck, welcome! Wow, man, you have a history and much experience living with CRPS. You've offered good, positive advice. Thats what Connect is about support, encouragement and learning by other experiences.

Thank you for sharing your chronic pain journey. May I ask what initially brought you to Connect? I read that you have been to Mayo Clinic a few times. I was in their 3-week pain rehabilitation program and had a phenomenal experience learning how to manage chronic conditions.

It's truly amazing you had an 8 year remission. CRPS is such a serious condition and management must be challenging. You really hit the nail on the head by owning the fact that alcohol and drugs play a role in upregulating more dysfunctional nerves. So many layers to peel back about pain management. Lifestyle plays a big role.

Congrats on your upcoming consultation for plasma-rich platelets. Knowledge is power! Do you mind sharing more about what your research found and why this treatment brings hope for managing CRPS?

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