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Old 09-18-2018, 05:55 PM
CRPSinCT CRPSinCT is offline
Junior Member
 
Join Date: Feb 2018
Location: Connecticut
Posts: 6
5 yr Member
CRPSinCT CRPSinCT is offline
Junior Member
 
Join Date: Feb 2018
Location: Connecticut
Posts: 6
5 yr Member
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I have CRPS in my right knee, and it has spread to my right arm. After I was diagnosed, I tried 5 lumbar sympathetic blocks, which didn't help much or for very long. By #5, I wasn't getting any improvement, and started to look up what was the latest for CRPS.

I found the RSDSA & YouTube channel. I watched their conference vids from Dr. Predeep Chopra, Dr. Jay Joshi, Dr. Philip Getson. They confirmed what I already felt was true--opioids seemed to work against my pain. I found out about low-dose naltrexone (LDN), palmitoylethanolamide (PEA), and alpha-lipoic acid (ALA). I also found out about IV ketamine infusions.

I started LDN right away, and it took several months to notice a difference, but it helps the pain so much. I also went on PEA, and began IV ketamine. The IV ketamine has been a lifesaver. I also started ALA (600mg in the morning, on an empty stomach, with one 350mg PEA), and it takes the edge off the worst of the allodynia.

Without IV ketamine, LDN, PEA, and ALA, I would be a crumpled up ball of pain. But I also use things like graded motor imagery (mirror therapy), desensitization, and exercise (within my limits). Eating an anti-inflammatory diet helps. I love swimming.

These are the things that have helped me maintain a semi-normal life. I even hold down a part-time office job. It's been amazing, even though I still have nerve activity/some level of pain 24/7. There's no cure for this, so...I just keep doing what I'm doing, and I am all about continuing my education in all things CRPS.

Good luck to you! I am so sorry you are in so much pain.
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