Junior Member
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Join Date: Feb 2018
Location: Connecticut
Posts: 6
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Junior Member
Join Date: Feb 2018
Location: Connecticut
Posts: 6
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What am I doing?
Hmmmm. I thought I did an intro already, but now I'm not sure I did it here in the CRPS/RSD thread. Please forgive me if this ends up being posted twice. My bad.
The short story:
So I was in an MVA 4 years ago and all of me healed up except for my right knee. Three years passed, filled with PT, 2 surgeries, lots of different drugs, lots of pain, lots of failure of treatment, tons of frustration, and no proper diagnosis. Cut to last January when an orthopedic surgeon said, (looking like a light bulb went off in his brain), "OH. Let's stop right here. I think you have CRPS. Used to be called RSD. I'm referring you to a pain management specialist.
New doc had only Lyrica, gabapentin, lumbar sympathetic blocks, and SCS to offer me. I thought, "There must be newer, cutting-edge stuff out there." I did the blocks (which gave me a few weeks of somewhat knocked down pain, or was it wishful thinking?) and researched like mad, finding RSDSA most helpful. Loved the vids.
Told my GP all about LDN (low-dose naltrexone), and she agreed & hooked me up with an awesome compounding pharmacy with a fab pharmacist who also compounded a topical for my horrid allodynia (and it does take the edge off). The LDN took a good 3-4 months to really start noting the effects. During this time, I experienced hella flares, and started looking into ketamine.
Talked to my doc, she said "Why not?" and I found a doc, beginning my infusions in Sept. 2017. I've also got an anti-inflammatory diet, take palmitoylethanolamide, vitamins B, C, D...I exercise within my limitations, indulge in local far-infrared sauna sessions, and try to practice mindful meditation. Looking now into brain plasticity and how things like graded motor imagery can possible help me mentally.
So I like my treatment plan. I'm still in pain 24/7, but the ketamine has been like the icing on the cake.
I'm here because "knowledge is power" has kept me going all these years, and I never want to stop learning. Also, CRPS/RSD has such far-reaching consequences, I need others with it to learn how to live life. I'm looking forward to getting to know you better and learn from you.
Thanks,
CRPSinCT
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