New CRPS patient seeking understanding and support

I have CRPS is my right hand/arm from an electrical accident so my experience may not be as helpful to you. It is a rollercoaster for sure. I did literally dozens of nerve blocks but I refused a SCS. Something about a lithium battery in my body really freaks me out. Probably too many years seeing them expand and sometimes burst as a computer technician. I had been looking into Neridronate infusions in Italy and then COVID happened. It’s very expensive, but everything I’ve researched shows it’s very effective. I’m a big promoter of medical marijuana for CRPS if it’s legal where you are. I have had the best results with it. I still can’t use my hand much, but I actually have good days where I can function. Pharmaceuticals caused WAAAAAYYYY too many side effects for me. Though I do use topical stuff a lot and that’s not as bad.

I wear a splint for my foot drop and it helps a lot. I have 1 more round of injections before I can have the ablation so I’m getting a slew of injections on Friday, again. Bad timing since I’m frantically trying to find place to live in my price range is nearly impossible right now. Tampa area has gone up so high in just 4 months, if nothing changes, everyplace I’ve seen similar to mine is $300-$600/month more. I can give on some things but not other. That all stresses me out with in creases pain but also gets my autonomic dysfunction flares up and I pass out about 3x/da or more cuz my blood pressure drops so low.

I have had CRPS for almost 9 years.

Ketamine infusions helped me tremendously u need to find a dr. Who will give it correctly it needs to be done in consecutive days 3-5 days in a row . If it’s done right u have a good chance of going into remission. 💕

I was diagnosed with CRPS in 2007. It now affects my whole left side of body, my Cardiologist is now telling me that my Blood pressure and Heart rate issues are all related to the CRPS affecting other areas inside my body now. None of my toes move on my left foot. I can get twitches of my big toe but that’s all, I have foot inversion and foot drop of my left foot. I have Bracial Plexus nerve damage in my left arm from being on crutches for 1 1/2 years. The depression is bad sometimes. I have 2 Spinal Cord Stimulators. I lost count on how many blocks, 5 back surgeries I am supposed to be getting injections in both hips. I had to postpone it because I came down with Shingles for the 7th time. So I’m waiting until all have popped and crusted over. Still have 1 left.

Hi I’m Dianne I have crps since 2015, it’s a roller coaster of emotions and everything in between. I have 2 scs and have had ketamine infusions as well.

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