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Jul 03, 2015 3:50 PM

I have been diagnosed with this in November 2014 and nerve damage from the service 15 years now and I was already told my condition would get worse this CRPS is the worse straight from hell how do you deal with the shooting pain that wakes you up and screaming because to rub it right away makes it hurts more so you have to let that pain shoot first and then you can rub can someone switch legs with me Gob bless

Jul 03, 2015 9:27 PM

Walkingonhotcoals, I'm sorry you're in so much pain. I don't have CRPS, or at least not diagnosed. I started having overly sensitive pain sensations on both legs in the past two to three months. I'll be praying for you. There are many here who can offer suggestions. ((Hugs)) 🙏🌼

Jul 03, 2015 9:58 PM

I'm so sorry you have CRPS, it's one if the most painful conditions I've ever known.
It is common for CRPS to spread, or get worse.
It is also common for it to leave after about a year (but if it's not caught early in that's very unlikely).
Mine started in the wrists, then spread full body.
The legs were the worst part.

I'm 14, so it was hard to go from normal, to limping, to a cane, to a walker, to a wheelchair.
However, I got treatment early on, but it wasn't until my dad found alternative meds that I started getting better.
Have you done the standard Neurontin/Gabapentin treatment?
It kind of helped me, at least temporarily.
I no longer take Gabapentin, and have been able to walk again, and begin to send the pain back to where it started, in my wrist.
Some things to try. ...
Ginger and Garlic and Magnolia Bark --- Help with Nausea and general pain
Kava Root --- a muscle relaxant, especially helpful when used with magnolia bark. It is traditionally a tea
DMSO --- an industrial solvent sometimes used to treat arthritis in horses. I rub it on my skin, and have gained much mobility
Low dose Naltrexone --- helps your body make its own natural painkillers, sometimes makes synthetic painkillers less strong. It also helps your body regenerate nerves
Horny Goat Weed --- increases circulation, which is especially important in CRPS
Gallium --- also used to treat arthritis in horses, it was one of the few things that helped me be able to stay in school
Lemon Balm --- treats nerve pain, can be eaten like lettuce or as part of a tea. It's part of the mint family and is grown in many places.

Just as a recommendation, try to avoid Tylenol because there's evidence to suggest it can help CRPS spread or be more permanent.

Have you done the desensitization therapy?
It's scary as hell, but I wouldn't be walking without my rice box.

Jul 05, 2015 6:37 PM

I was diagnosed with CRPS almost 2 years ago for nerve pain in my right arm. I was unable to use it at all and spent most nights lying awake in pain. I tried gabapentin and all sorts of other drugs. Oxycodone was the only thing that helped, but really messed with my head. I tried physical therapy and had 4 nerve blocks. The nerve blocks reduced the pain enough that I could sleep, but didn't fix it.

I finally found a peripheral nerve specialist. He thinks CRPS is a catchall that doctors use when they know it's a nerve problem, but can't diagnose it further than that. He was able to determine what nerves were being impacted. All the word symptoms I was having, made sense to him. He performed a surgery where he severed the peripheral nerves from the skin where I couldn't bear to be touched. He also did a release and decompression of the medial and radial nerves. There was immediate relief (pain from surgery is very different from the nerve pain I was feeling). There's another major nerve in my arm still having issues and we're probably going back in for that one, but I haven't any narcotics for pain since the survey over a year ago (some days I've been close).

I'll admit I was terrified because some of the CRPS websites say surgery will make it worse. However, I was ready to cut my arm off, so surgery was worth a shot. Anyway, my take home message is to look for a peripheral nerve specialist, not just pain docs or regular nerve specialists. Good luck!

Jul 05, 2015 6:48 PM

Walkingonhotcoals43 I am so sorry to here that you are in such horrible pain. I don't have CRPS but I do deal with nerve pain. I will be praying for you to find the right Dr to help you.

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