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I think I have erythromelalgia

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Unread 11-18-2012, 10:59 AM   #1
Stacy2012
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Default I think I have erythromelalgia

http://www.erythromelalgia.org/WhatisEM.aspx

I was reading about this and this is exactly what happens to me. The before and after pictures they show is exactly what happens to me. Especially when I exercise.

Anyone on this forum have this??? I stumbled on it, and no virtually nothing about it, but it sure descibes me.
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Unread 11-18-2012, 11:05 AM   #2
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We've had several people over the years with this.
Dr. Jay Cohen MD has it and used magnesium to reverse it.
He wrote a book about it.
http://medicationsense.com/erythromelalgia.html

If you use our search function and type in "erythromelalgia"
you can find older posts.

There are some threads on RSD forum too.
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Unread 11-18-2012, 11:32 AM   #3
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Thank you, that is a great link and I followed it to some of his treatments page.

All his treatments are perscription, nothing over the counter.

But I will look for some magnesium lotion. MrsD are any brands good?? I think I saw some at walmart but it didn't appear to have a high amount of magnesium in it.

thanks so much
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Unread 11-18-2012, 11:56 AM   #4
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I use CVS brand but they discontinued it. I bought ahead, 3 bottles.

Epsom-IT is the next closest:
http://www.westmedics.com/epsom-it-b...ML-bottle.html

Prices vary on this product quite a bit. This is the least expensive.

Another is Kirkman magnesium cream:
http://www.amazon.com/Magnesium-Sulf.../dp/B005FMZSDW
The price doesn't vary much with this... but it is measurable, which others are not.

I really like the topical best myself .
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Unread 11-18-2012, 12:27 PM   #5
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Stacey, on Mrs. D's link, I see a link about supplements to help. Did you see that?
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Unread 11-18-2012, 12:42 PM   #6
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no , i guess i missed it. I will go back and look. thanks sally!
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Unread 11-18-2012, 03:27 PM   #7
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Ok, I went and looked at the list. I am confused. One of the supplements on the list of things NOT to take is magnesium. Huh??? B12??

5HTP
Bioflavinoids Lycopene
Borage Oil Magnesium
Carnitine N-Acetylcysteine
Coenzyme Q10 Selenium
Evening Primrose Oil Taurine
Fish Oil Vitamin B3 (Niacin)
Flax Oil Vitamin B12
Garlic Vitamin E
GLA (Gamma Linolenic Acid) Zinc


Magnesium
Based on surveys, it appears that about one third of us are helped by magnesium, one third worsen, and one third obtain no effect. The good news is that when magnesium works, it can work very well. Magnesium is the body's natural calcium channel clocker. The recommended daily allowance is 400 mg/day. Alternative doctors often recommend 600 or 800 mg/day. Start with a small amount, 100 200 mg/day, and increase gradually. Use high quality magnesium because poor quality can cause diarrhea. My favorite magnesium product is Magnesium Plus Protein (mgplusprotein.com), but it is easier to get magnesium citrate or gluconate or Natural Clam (magnesium citrate crystals in water) from a health food store. Magnesium therapy requires normal kidney function and good hydration, and use in the elderly or dosing above the recommended daily allowance of 400 mg/day requires medical supervision. Alternative doctors (find one at ACAM.org) are usually more knowledgeable about magnesium than mainstream doctors. Under their direction, higher doses of 600 800 mg/day can be used. Other substances with mild calcium channel blocking effects are chromium, high doses of ascorbic acid, and the herb butterbur.

Ok so that paragraph means ascorbic acid would be bad.

I feel like I am always taking 1 step forward and 2 steps backwards.

I also use to be on a blood pressure medication called micardis , i think. it may have caused me problems too.

I wonder if I should stop magnesium and B12 for awhile....
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Unread 11-18-2012, 03:51 PM   #8
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Based on that list is POSSIBLE causes.

Too much of one or more of them may cause too much vasodilation.

I think magnesium is one of the first to try, because for some it does work. Just like it improves migraine, it prevents the extreme contraction/dilatory reflexes. Too much dilation is bad, but some is desirable.
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Unread 11-18-2012, 04:09 PM   #9
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I have been on magnesium for a long time and B12 so I am wondering if they are making things worse.

I went on magnesium cuz it helps lower blood pressure, been on it for years.

B12 only 6 months. Truthfully, I have no idea if B12 is helping or not.
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Unread 11-18-2012, 04:14 PM   #10
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If you didn't get tested in the beginning you don't know if you really needed it.

You can stop it for a while and see if anything changes.

Basically some supplements work nicely, but people can tend to overdo them, or take too much of them.

The people with EM seem to have overactive constriction/dilatation problems to begin with.

Those are suggestions only on that site...not cast in stone, by any means.
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