[olecyn]

Hey guys,
Been in a severe flare the last month.
Not only is my PT working on my ROM, pectoral minor and major and scalenes
The CRPS is so severe some days
I dont even remember driving to PT today
My whole body is messed up

What do you all do for the horrific CRPS pain?
My existing meds aren't working, Opana, Valium. Xantac, Oxy, Soma, even tried a benedryl which has asprin in it to see if I could get a break through.
PT says to move and not lay still to get my circulation moving
Like today its hard just to stand up to go potty.
Everything hurts, my eyes, sharp head pain, pelvic pain, lower bpdy pain, upper body which include my everyday TOS burning pain, pain.

Any suggestions?

[tshadow]

Try the sublingual b12 (I had a hard fall which caused the problems) and also do the refrigerated yeast. Do it maybe 5 times per day, with most events at night as you are trying to rest, mediate away the pain...............

[tshadow]

Don't forget that it is true that CRPS or RSD and Fibro all go away to some degree just by time, ok? It is a true promise.

[beth]

Cindy,

You need something specifically for neuropathic pain in addition to the oxycontin. Is Opana your BT med? I know I've heard of it, but not familiar with it. Any way, the others are basically for anxiety and muscle spasms, not pain. Neurontin or Lyrica, if either work for you without too many side effects, are first choice for nerve pain. My kidneys don't like them. If you can't take those, Topomax is another, although it makes me a zombie, and others can't tolerate it. Some it works well for though.

If Lyrica, Neurontin, and Topomax are out, then it's the older tricyclics and the like. I have been taking Zonegran for several years, Dr Machanic, a neurologist Dr Annest sent me to in Denver, recommended it. It does help some, in addition to the oxycontin. I haven't had ANY side effects to it that I've noticed, and it has been almost 4 years now I've been taking it.

I also take Cymbalta, which is an antidepressant but also helps with pain as well. It helps with seretonin levels in the brain. I do see a difference since switching from Effexor to the Cymbalta, and again, I haven't noticed any side effects. Of course each of us are different. I had my share with some of the others, believe me. If I could get my PCP to see the need for a break-through med I'd be in pretty good shape right now med-wise. But he doesn't want to rx anything more (opiod-wise) than the oxy, so I'll just have to be very good, or pay the consequences for the time being I guess.

Ask your Dr about a med for neuropathic pain!

beth

[olecyn]

B-12? HMMM...

Beth,
Unfortunately, my system will not tolerate Neurotin and the others.
Thank you for the breakdown of meds and your contribution.
I'm better today after trying a handful of different meds yesterday.

I just don't understand the off-the-scale pain and what to do for it when it happens. PT was right... keep moving but at a simple basic pace. No heavy duty, no lifting, no cooking, cleaning, nothing but just breathing longer when you blow out than when you take a breath in and gentle moves and try to walk at little at a time.

[olecyn]

I've been reading it progresses over time.
Any url's to share?

Originally Posted by tshadow

Don't forget that it is true that CRPS or RSD and Fibro all go away to some degree just by time, ok? It is a true promise.

[beth]

Hmm, I've always understood RSD is progressive too. Having said that, you can see some periods where things are quiet, RSD-wise, after you've had it for some time (think 2-3 years - again, it's so individual - some respond well to stellate blocks and get relief sooner, or find a great Dr who won't give up til he finds the right combo of meds - if you find a Dr like that, please CLONE him!)

I'm not doing too badly this winter with the RSD - but I've hardly been out the last month, weather has been just nasty! Staying warm and not doing much to aggravate things is keeping most RSD pain low. When I do get out and about, first thing I notice is the burning in my feet. This pain, and the pain in my right hand (injured arm) have been with me the longest, are my worst areas of RSD pain, and the feet have definitely gotten worse over time.
When they flare up I can hardly walk on them at times. But I am not in an almost constant flare-up as I was for a very long time. I also rarely get "zingers" now, and haven't had any spots of "sunburn" pain for ages. The burning pain, the cold pain and the feeling of acid eating at the bone, those I have pretty constantly in the hand and rt forearm, but they aren't showing up in other parts of my body lately, my left hand is even behaving!

Given the cold and snow we've been getting, I don't get it, but I'm NOT complaining!!

beth