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Old 09-17-2014, 06:58 PM
birchlake birchlake is offline
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Join Date: Jan 2010
Posts: 363
15 yr Member
birchlake birchlake is offline
Member
 
Join Date: Jan 2010
Posts: 363
15 yr Member
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Harry, I can relate to you as I have CRPS in my big toe as well.

There is absolutely NO way to determine if yours or mine will spread. None. I trust no studies as there is nothing that really has meaningful scientific significance. There are not enough of us with CRPS to justify big money and long term studies. Sorry to all of us.

My CRPS started in 2009 after a toe surgery. I have been able to manage it with a med cocktail (gabapentin, amatriptyline, naproxen). I started with percocet, but that became a dead end for me with many side effects, so I weaned myself off of it. That wasn't fun!!!

I have a religious daily management strategy that includes a warm (not hot) soak of the toe, (I actually soak my whole body in the tub) stretches to keep the toe limber, full lower body stretches prescribed by my physical therapist, some yoga (don't laugh) and some meditation. Not done yet. Along with the above, there is occasional chiropractic and massage because my walking gait has been altered because of the pain in the toe and it now affects my hip. I need a knee replacement on my other leg, but because of the possibility of CRPS spread, I'm postponing that as long as I possibly can.

I researched CRPS until the cows came home (they never did). I am a huge fan of internet research and there is some very good information out there, but what I found is that you can get to a point of "paralysis by analysis". Research is good and very important as knowledge is power, but you can get overwhelmed by it and addicted to it. Don't go to that place; it will make you crazy.

Find what works for you (it varies tremendously) do it religiously and cross your fingers. CRPS is best managed with a "multi-disciplinary" strategy. Don't rely on just meds; that is a dead end road. Be sure the professionals you work with are familiar with CRPS. Ask them point blank. If they aren't familiar, be on your way.

Those of us with CRPS just never know when the other shoe will fall. Just hope it doesn't. For some, it doesn't. If you need surgery, be damn sure you NEED it. Get multiple opinions as surgery (or trauma of any kind) can spread CRPS. And if you do need surgery, have consults with doctors and anesthesiologists who can help you keep you central and sympathetic nervous systems calm (nerve blocks, etc). while you have that surgery.

Good luck and keep us updated! We toe guys have to stick together!

Last edited by birchlake; 09-18-2014 at 05:32 AM.
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HarryDresden (09-18-2014), Phaedra (09-19-2014)