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

Hello everyone.

I’ve been on this site before and got some amazing support and advice, and here I am again, in another situation!

Trying to keep this short - I broke my collarbone in June 2016 and had it operated on - plated and pinned in July of that year.

After so many months it was still bothering me and the Surgeon suggested I may have RSD ... I was supposed to go back and see him as yes, it is still bothering me, but since then, I had a fall from my mobility scooter onto a road - luckily the traffic stopped!

There was no break to my hand but I was taken into Hospital as they suspected something called Compartment Syndrome ... the following day a rash spread up my arm and they worried about Sepsis ... so I ended up having two weeks in Hospital with my arm in an elevated sling, with anti biotics and lots and lots of tests.

In the end, they decided on CRPS.

I have been having Hand Therapy, gentle massage, mirror image therapy and now my Pain Doctor wants to do a Bier Block .... I’m a tad wary as the cannula will be going in my CRPS hand. (He even suggested that he may have to put my hand in hot water so he could find a vein)

On top of this I have other numous pain problems ....

Am joining you all here for support and also, when I’m feeling in an OK mood, to support others.

Saffy,

Sorry about your latest predicament; but am glad to see you have posted.


Gerry

hi Gerry ... yep, it seems to be one thing after another!!

Phoning the Pain Clinic today as the Bier Block didnt work at all last week ...