Hi, I got this Beast in 2008 after surgery for Carpal Tunnel. At the time I was living in Northern Michigan (since moved much too cold in winter there!) I was under the care of a really excellent PM Dr Unfortunately I also had what he described as the most aggressive case he'd ever seen. To keep this short I'm now living in Southern Georgia my CRPS has gone full body, I've had an SCS implanted and removed (due to a MRSA infection) and sad to say my CRPS is as aggressive as it's ever been. I've been bed ridden most of the last 2 months only leaving my house for Dr.s appointments (after which my pain flares for at least a week)

I currently take a medication cocktail that is ineffective but essential since without it the pain becomes unbearable. Still drafts are torture and my body a patchwork of searing hot spots and frozen spots. I break into sweats sometimes full body at others in just one place or another.

My treatment options have run out since my PM Dr. doesn't do Ketamine yet and another Dr. that does told me my Medicare Advantage program doesn't cover the treatment since the FDA hasn't approved it for CRPS.

So here I am.. Diagnosed (I even had a Triple phase bone scan confirmation),

Prescribed with meds that seem to help less each day..

And left to suffer... Since the FDA hasn't listed Ketamine as a CRPS treatment my Medicare Advantage program won't cover it and even if they did until my PM Dr doesn't yet offer that procedure and travel to a Dr that does would even if it were covered would be very difficult.

Hi Bill,
Really sorry to hear of all the crap this monster is putting you through.
I just want to chime in that I can relate about the cold weather effect.
Whenever I travel up to Chicago to visit family I get hit hard because the quick weather change. Winters down here are even tough on me.
I can't move farther south because humidity plays havoc on me too. I love the mountains too much to leave anyway.
I hope you find relief...

Hi Bill, I'm sorry you are suffering from rsd. There are other meds and treatments like nerveblocks and physical therapy that insurance does cover. Maybe you could check with your PM dr about them or seek another PM dr who may be more familiar with ways to help manage the constant pain that rsd causes. I hope you can find a dr who can do that soon. Take care my friend.

Russell Along with the Thanks I just wanted to say it was tough leaving our place up north. Funny how many people don't realize the Gem that is Northern Michigan the lakes and the towns... I also found out about winter down here, this past one was hard and pretty much kicked off the roller coaster I'm still on. Then again I've seen folks or talked to people online who've had a worse time so I guess so far I'm lucky since we all know with CRPS things can always get so much worse.

RSD ME, Thanks, but I didn't want to waste space with all the treatments I've tried so far, even my Northern Michigan Dr. told me that aside from some type of Ketamine infusion all I had left was the pharmaceutical options or warm water hydrotherapy which unfortunately isn't close enough to be practical since I really don't travel well.

I do appreciate the support, what our condition needs is more awareness I think the whole Paula Abdul thing set us back 20 years.. I don't know if Ms Abdul has CRPS for real in a very mild form or not but the impression she gave that it could be lived with that easily and "cured" when even with the Ketamine Coma treatment they have patients that a year later have a reoccurrence.

Hi Picobill - so sorry you are challenged with full body, I can't even imagine. Im curious - did you move south due to health concerns, or other reasons? I've often considered it, just don't know where I would go.

Yup, I DO know the beauty of northern michigan! Sounds like you miss it. Perhaps you can plan a visit in June when the days are long and weather is mild.

A warm water pool does great things for me, I wish you had access to one. Do you soak in warm water epsom salt baths?

Wishing you wellness,
Lottie