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16 Years With CRPS

Chronic Pain | Last Active: 18 hours ago | Replies (25)

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@4me

I am so sorry that you have and continue to suffer from CRPS for 16 years. Hoping they can get your SCS working again. What caused your CRPS?
I am newly diagnosed with CRPS December 2024. I have been to so many doctors for the last 4 years and no one could give me a diagnose. Finally, found a Dr that specialized in cancer pain. He diagnosed me within the first 3 minutes of my appt. It was such a relief to put a name to my pain. I am still trying different things but nothing has helped so far.
As you said there is not much that helps. Hoping you can get your SCS fixed soon for some relief.
Thank you for sharing all your treatments.

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Replies to "I am so sorry that you have and continue to suffer from CRPS for 16 years...."

It was an injury from an IED in Iraq that triggered this. Something needs to be done about diagnosing people faster. That is the key to beating it, is fast diagnoses and fast treatment. You have to fight, dont let it win. I know its easier said than done, but if you let it take control. It will drain your mental stability.

Watch Dr Getson on UTube. He is a wealth of information. Address your diet immediately as he states. Stop all sugar, it is inflammatory ,as a matter of fact if it is white don't eat it. Sugar, flour and rice are examples. Stay away from red meats. You do need protein but limited to chicken, turkey, and fish. I ended up at a teaching hospital (UNC) and got some relief. I did get a Boston Scientific Implant. Keep moving. there are different stages to this disease as explained on web look up a support group listed under RDS. Hopefully, yours will clear up.

Hi im new to the group . Wanted to share my story of Complex Regional Pain Syndrome .
2021 - I had a 1m fall at work from elevated walkway onboard a fuel cargo ship. Landing knee 1st onto a gridmesh step. I tried to catch my fall extending my left arm to a stair railing . Next day my knee was sore but my left shoulder a severe dull inner pain. Docs sent me for a scan , revealing a torn Labrum . (Shoulder tear) I was tbooked to have private surgery within 2 weeks . With this surgery they add a 12hr nerve block . Post opp when the nerve block wore off i knew i was in trouble . I shaking uncontrolably in pain like i have never encountered before . The opp was a overnight stay . I sayed for 2 more nights . Sent home 6 weeks 24/7 arm in a sling . Other than for pendular movement and showering . Week 7 start physio. I cant move my arm and physio says i need to get pain levels under control before they can do anything . Sent to a pain management specialist . My arms all blotchy , my elbows blown out to tennis ball size , and im getting bolts of lightning traveling through my arm . Im told i fit the criteria of CRPS . Physio . Ive done mirror therapy . Moving good arm in front the mirror caused bad arm to flare up. Droped back to picture therapy . Pictures of people using theur arm and i cant for the life of me identify the difference between left or right hands in a picture . Im told ive lost the pathway to an extent and cognitive function . Its 4 years now post opp and i have failed return to work medicals twice . Ive been poked and prodded and jumped through every hoop like a circus pony . Im over it . I rarely leave the house for the fear of someone bumping my arm . I havnt had the lightning bolts for a while but know all to well they are only 1 sudden movement away . I still have a limited range of movement in my left arm , 18% permanent impairment . Im now having back and opposite shoulder issues as i only lift items with my good arm . I didnt believe in CRPS at the start and i was so convinced that i had a botched surgery . The turning point was when my physio said to read forums likes of peoples accounts of CRPS . SO many cases near identical to mine . All this from a 1m fall