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barbbie (@barbbie)

The Pain in CRPS

Brain & Nervous System | Last Active: Nov 3, 2023 | Replies (9)

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@marksholl

I just recently got diagnosed with CRPS Type 1/RSD. It’s very aggressive and extremely painful. It’s in my right foot, ankle and leg from the knee down. I had my foot and ankle operated on twice, most recently in 2018 and the RSD bloomed from that (according to four different providers that I have seen). I also sprained the same ankle 20+ times as a gymnast while as an athlete and a coach. So from the combination of the surgeries and the many sprains I had, My doctors are rather concerned. I am the beginning stages of treatment and honestly, my hat goes off to those who have dealt with this disease/disorder for many years.

I have started a journal of what goes on with my pain along with what others have listed in this specific forum. I list my pain on a scale from 0-10. My pain never goes below a 7/10 EVER. It’s very uncontrolled and extremely distressing (to say the least). My advice to you and those who are stricken by this nasty disorder is to find immediate medical attention by your PCP and then go from there. Research your symptoms but do not get obsessive over it. Do not self diagnose yourself, that’s the worst thing you can do. Keep an open mind. When the four providers I saw all agreed with each, I knew I had a big problem. That’s when I started researching what RSD was.

My pain management doctor who has taken over my case totally has started me out with aqua therapy, lidocaine infusions, and Gabapentin for the pain (so far). Needless to say, the Gabapentin isn’t doing a darned thing and I’m afraid to say anything to my pain doctor for fear he thinks I’m drug seeking. I am not, at all. I just pray for 30 seconds of relief a day and haven’t had it in a while. At 34 years old, I should NOT have this going on.

I hope and pray all of you this read this find relief in your CRPS diagnoses.

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Replies to "I just recently got diagnosed with CRPS Type 1/RSD. It’s very aggressive and extremely painful. It’s..."

Hi Mark! I'm Renee. We sound like 2 peas in a pod lol. U have 2 try and laugh at something with this horrible disease!! I was diagnosed a little over a year ago. I started with a broken ankle 6 months b4 my life changed forever. I made it through a very long journey with m y ankle 9 months in a full boot. I was so happy to start physical therapy. But my foot and leg started to turn purple and swell. Then I went 2 my orthopedic surgeon and he happened 2 have a co worker who research ed crps 4 two years. They immediately sent me 2 a pain management doctor. I got 2 nerve blockers in my foot and leg and it worked. Little did I know how this disease totally is like nothing else. Jumped to left hand and arm with in 2 week s. Nothing worked gabapentin a total joke. Then nerve blockers no luck. Hand was in atrophy and my doctor booked and immediate trial spinal stimulator implant. I wa s about 2 lose my hand and scared as shit!!!! The trial gave me my hand and ar. Back within 3 hours I was amazed
He booked me for an implant 4 days later. The surgery was tough and recovery. But it was great, until it jumped to other arm within a month. The put 2 titanium leads in so the were able 2 just turn it on. Unfortunately it's now in my spine. But I can control some pain in hands and arms. I also keep a pain journal . My state has medical marijuana which has been a life saver.
U can talk 2 me any time. Keep some faith. I also due allot of medical research I do, so if u want 2 find out anything I can try to help!!! Best of luck..and I am only a few years older than u.