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Jul 25, 2015 9:36 AM

I was diagnosed with this CRPS in November last year and this is the worst think I have seen involving the limbs since sclerosis make I don't have people to talk to that understands what I'm talking about I need a support team that I can call on when the burning shooting pain is unbearable what depths of hell did this disease come from

Jul 25, 2015 12:21 PM

Well hi and welcome Your in the right place I know pain I don't have c.r.p.s. Official yet but I know I do but I have good ears and will hear lol you have to vent about or answer anything I can but there's a whole big family of ppl here

Jul 25, 2015 12:55 PM

Are there any local groups for CRPS? I know there's one if I'm willing to drive a couple hours. I'd let you call me but I don't have a or of answers. I've had CRPS for about a year now. It started in my wrists, then went full body but after trying and experimenting with 60+ medications and alternatives, I am in a partial remission, so it's back to just the original limb.
Some things to try. ...
Kava root - muscle relaxant and painkiller traditionally used as a tea
Magnolia Bark extract - painkiller
DMSO - helped with mobility, used more often in horses, don't use if you've had an organ transplant
LDN (low dose Naltrexone) - helps reset the body arne nervous system, increases the production of the body's natural pain killers. Helps with nerve regeneration
Gallium - arthritis treatment for horses, good for rashes or allergic reactions
Horny Goat Weed -increases circulation
Quinine/Tonic water -over the counter pain killer sold as a soda
Lemon balm - treats nerve pain
ketamine - depending on where you live it might be an option but irá expensive and not usually covered by insurance, similar to LDN

Jul 27, 2015 11:37 AM

CRPSVeteran2014, Welcome to the community! And thank you for your service to our country! I'm very sorry that you and most of our vets have been injured, especially with lifetime consequences.

You'll find support here from everyone because we all share chronic pain. I've learned a lot from others here, and I've tried various alternatives to pain meds. Some work and others haven't, not for me. I'm allergic to most rx meds but I wouldn't want to just sleep my life away in la-la land, which oversedation is a major effects of meds to me. I have a genetic defect that doesn't allow normal metabolization of meds and vitamin Be.

I haven't been diagnosed with CRPS, but I've had symptoms of it in my feet and hands. Unfortunately I do have Sjogrens, hypothyroidism and fibromyalgia, neuropathies, and they (as many conditions) share similar symptoms, so it's getting difficult to know which symptoms is from what causes. I've only been on Plaquenil, a med for sjogrens that is used for malaria, about two months, and I can tell it's working to lower my pain and learn the burning and singing symptoms in my hands and feet. My PCP doc wasn't addressing my complaints so I went under a rheumatologist and endocrinologist, who are both helping me feel better. I also have a pain specialist. I recommend one for you, as well as a rheumatologist. There's also nerve meds like gabapentin and lyrics, that helps calm nerve pain.

You can come here for compassion, support, guidance, questions/suggestions, to rant/complain, etc. You won't be judged. We are a wonderful mix of people from all countries, religions, etc. I'm a Christian & I do not take offense to what others believe or comments. We're all here for each other! I'll keep you in my thoughts and prayers, and hopefully soon you'll be able to find ways to get better relief. 🙏🌼

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