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I think I have erythromelalgia

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Unread 11-18-2012, 04:37 PM   #11
Stacy2012
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True. I did not get tested for magnesium. I don't no anything anymore. It's time to just step away again and take a break.
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Unread 11-19-2012, 04:56 AM   #12
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People who suffer from EM find a wide variety of medicines, lifestyle modifications and dietary changes affect them in different ways. What works for one might well not work for the next ten! Worse than not working, what works for one may make others worse.

You will also find that a lot of EM sufferers seem to be extraordinarily sensitive to medicines. Please, anything you try, start with tiny amounts. And, when stopping things, it can be worth tapering slowly down rather than abruptly stopping.

I live with an EM sufferer and can see that it also varies considerably, day by day, hour by hour, even without any obvious changes. So can also be very difficult to be sure of the impact anything has. One day something may seem to help. The next it makes the EM worse. But perhaps it actually has no effect and you were going to have those changes anyway?
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Unread 11-24-2012, 05:43 PM   #13
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I looked at walmart for ANY lotion with magnesium in it and there was nothing.

MrsD I know you gave some options, are they only available online?
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Unread 11-24-2012, 06:14 PM   #14
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yes, online only. Not a common product.

Soak in epsom salts if you don't want to do lotions/creams.
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Unread 11-25-2012, 06:01 AM   #15
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Quote:
Originally Posted by mrsD View Post
yes, online only. Not a common product.

Soak in epsom salts if you don't want to do lotions/creams.
But do NOT soak EM affected parts (e.g. feet) at all - with or without Epsom salts. It very often causes skin damage which can take a very long time to recover from.
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Unread 11-25-2012, 12:30 PM   #16
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Hmmm... I have been soaking in epsom salts for a several years now, even before my neuropathy, and continued after cuz I thought it would help. I think it does help, but everything seems to change that i don't know anything anymore. :/

Maybe I do not have EM. But it sure feels, looks and seems that i do.

thank you.
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Unread 11-25-2012, 12:42 PM   #17
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I think some people use water that is too hot and too much epsom salts.

I never soak in anything hot, and I don't use much.

It makes my skin hydrated and very soft.

I would think also that people with EM have sensitive skin, since
there is always something going on with the circulation that is not normal. The skin therefore may be thinner in those areas.
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Unread 11-25-2012, 02:02 PM   #18
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......I always take a HOT bath. And I use 2 cups of epsom which is alot but my tub is a very big tub, jacuzzi size, so it takes a lot of water to fill it. Matter of fact it uses almost all the hot water in my tank.

I know the hot water irritates my feet a little while in it but after I get out it is ok. I have not noticed a problem. I can not take a bath in water that is not hot.

MrsD funny you mention sensitive skin, I never use to have but in the last year it sure seems like it. Matter of fact I have stopped ALL supplements AGAIN except for benfotiamine because something is causing me to break out in bumps and believe it or not, I think it is the B12. I know that seems crazy but I have begun to believe the B12 is doing it. This is the second time I have stopped all supplements and the B12 was the last thing I added back into the mix then it started again. I will add one at a time back starting next week.

And strangely, when I have a flare up with my toes burning real bad, I noticed the last 3 times I have a couple little bumps appear during the flare up on my shin or calf area or ankle that itches horrid during the flare up then goes away when it is over.
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Unread 07-07-2013, 02:48 PM   #19
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Default OK, I think I might have this too...

Never noticed until I snapped this picture to show a friend the nail polish that matches my new Fiat 500, and was amazed how red and angry my toes look:



After asking several people, I realized that everyone has noticed this but me. And not one doctor has ever mentioned it. I guess it doesn't really help much to have another name for it, but at least it explains why heat is my biggest enemy, not cold like most people here say. And why dangling my feet in a swimming pool feels good, but a hot tub is torture. And why I have to avoid direct sunlight like a vampire (it was excrutiating just taking this picture).

Oh well, it probably doesn't change anything at all. But I do have a very cute car.
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Unread 07-07-2013, 03:06 PM   #20
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Wow. Joan.... anyone with EM should avoid Heat at all costs.

Have you read Dr. Jay Cohen MD?
He has this problem, and uses magnesium and a specific serotonin antihistamine antagonist from Canada for it.

Google Jay Cohen and EM.
http://www.jaycohenmd.com/erythromelalgia.html

I think HEAT of anyone with with PN or a variant, should be avoided.

RSD patients seem to seek heat for their neuropathy, but that is rather unique. Even my chiro told me to lose the heating pad!
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