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rsd/crps
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tessaspringf posted:
My husband's hands look like he has raynaud's phenomenon. But blood work says no. Does anyone know what this could be from?
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ctbeth responded:
Hello Tessa,

No one can know why your. Husband's hands look as they do from an internet support community.

If your husband has a primary care physician, and the appearance of his hands is troublesome to him, his doctor will probably be able to help answer your question.
 
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ctbeth responded:
I just noticed, your discussion is entitled, "rsd/ crps.

What is that all about?
 
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annette030 replied to ctbeth's response:
Is that put there by the poster or by a moderator?

Take care, Annette
 
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ctbeth replied to annette030's response:
When opening a discussion, we are asked to entitle it, hence I assume that the original poster wrote rsd/crps.

It has been almost a week and she hasn't returned.

My heart breaks for anyone with rsd.

My MD has quite a few RSD patients who are getting Calmare.
 
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annette030 replied to ctbeth's response:
Good to know!

She hasn't posted anyhow.

My heart also breaks for folks with RAD, or Shingles' post Herpetic Neuralgia, or Trigeminal Neuralgia. I would guess anything that hurts worse or differently than my own pain really scares me.

Hugs, Annette
 
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d_payne replied to ctbeth's response:
My 17 year old daughter has CRPS/RSD and is currently getting Calmare treatments. Her pain is always reduced to "0" with the treatments but the results aren't lasting. If anyone else is getting this therapy, please share your results.
 
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tessaspringf replied to ctbeth's response:
The physicians are the ones who advised me to turn to the web.
 
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tessaspringf replied to ctbeth's response:
What is Calmare? I have never heard of this. What does it treat, rsd or the skin change? I will be taking him to Cleveland Clinic in June. Is this something that they may offer? His team of doctors are all upset at his recent decline in health. They advised that he is deteriorating rather quickly.

Tessa
 
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ctbeth replied to tessaspringf's response:
Hi Tessa,

This isn't about you, but I find it disconcerting that an MD would advise a patient to look for health care answers on the internet.

I have had Calmare and experienced the same sort of result: I had wonderful pain relief directly after the hour treatment, but it didn't last more than a few hours.

My insurance doesn't cover it, and it cost me $200.00 per day/ $1,000. per week. For me, it wasn't worth it.

Actually, Tessa, if your MD doesn't have information about Calmare, perhaps you can do a google search.

The web sites can probably give you more complete information than I can .

After you read up a bit, and you have questions that haven't been properly answered, feel free to ask here.

My email address is published in the little "My Story", but email addresses that my program doesn't recognize will go straight away to my "junk" file. If I know to be expecting email from the site, I'll check my "junk" file twice a day.

My MD has told me that his RSD/CRPS patients have done well with Calmare. I was his first SCS patient, so there we didn't have any expectations.

If I could realistically afford a thousand dollars a week, and didn't live so far away from the MD office,

I'd have Calmare don't every morning and enjoy the rest of my day. But, it's an hour drive to the MD, so I'd spend a part of my life :

Each month would equal:

40 hr car 20 hr on the Calmare machine $4 K.

I hope that your insurance company will pay, in full or in portion. My MD's prediction is that Calmare may be more- readily covered for the RSD/CRPS diagnosis than SCI.
 
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annette030 replied to ctbeth's response:
Calmare apparently has not made it to the Northwest Coast yet as the pain management specialist I spoke with a couple of months ago had not heard of it.

Until insurance covers it, I can't see many people being able to pay for it.

Hugs, Annette
 
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tessaspringf replied to ctbeth's response:
Thank you so much for the information. I will see what I can come up with.
 
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d_payne replied to tessaspringf's response:
Calmare is a non invasive therapy that sends scrambled signals to the brain telling it that there is no pain. It certainly doesn't work for everyone and my daughter is a prime example. What it has done is reduced her pain levels and stopped the progression of RSD. While getting treatments in NJ I witnessed several patients that went into remission for weeks or months so don't rule out this treatment. We in in North Florida and the closest treatment is over 8 hours away but I am continuing to get her the treatment in hopes that eventually she will get into remission. I'm trying to convince DR's locally to get the equipment but none so far. There's lots of info out there and I suggest you look at Calmare NJ. That's where we started. For treatment locations try http://calmarett.com/ . Best wishes and God bless all of you.


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