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Red Burning Feet or Hands: Erythromelgia

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Unread 01-22-2012, 09:12 AM   #1
Cal1700
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Exclamation Red Burning Feet or Hands: Erythromelgia

Hello All,

If anyone out there has painful (often characterized as a burning pain), red, warm feet or hands; and if cooling and elevation relieve that pain, you may have a condition called Erythromelalgia.

The diagnosis is clinical, that is, there is no blood test for the disorder. Talk to your MD (I am NOT an MD, and you will need an MD to diagnose and treat this disorder).

but... Good news folks- it can most often be treated. Do a search under "The Erythromelalgia Association". Your MD can access free medical jounal articles at that site.

I was (unfortunately) practically the poster-child for this disorder. This was due to the fact that I have three major tissue destroying disorders (MS, CIDP {a type of Neuropathy} and Sjogrens). When ever tissue is destroyed in the body, Erythromelalgia can develop.

It's symptoms can range from rosey feet or hands with an uncomfortable sensation of warmth in the extremity all the way to bright red extremities that feel like they are on fire.

I had a rough time with this in the late 1990's, but there are many treatments available today.

Best wishes,

Cal
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Unread 01-22-2012, 09:36 AM   #2
mrsD
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Welcome to NeuroTalk:

Please do tell us what works for you.
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Unread 01-22-2012, 03:31 PM   #3
Cal1700
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Default Treating Erythromelalgia (Red Burning Extremities)

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Originally Posted by mrsD View Post
Welcome to NeuroTalk:

Please do tell us what works for you.
I had a much more severe case of Erythromelalgia than most people, but the danger is that the red, burning hands and feet will gradually get worse over time, which happened with me.

Medical journal articles indicate that the best bet is to make sure to treat the underlying problem- such as the MS, or treating the Arthritis, etc.

What worked for me was:

1) Neurontin in large doses to treat the burning pain. This is probably the most significant drug to treat Erythromelalgia.

2) Diltiazem, which is a calcuim channel blocker.

3) Intervenous Immune Globulin (to treat my CIDP based neuropathy).

4) Magnesium in large doses. (The diareah that accompanies the ingestion of Magnesium can be averted with the use of acidophollis products.) Note that this magnesium treatment was later the subject of a Medical Journal Article. That study indicated that Magnesium was successfull in the useful in treating Erythromelalgia.

The Erythrmelalgia Association (TEA) has a good sized library of literature on treating this disorder which is available for free to their members. TEA is a non-profit organization. The membership fee is tax deductible.

Treatments that work are variable based on the individual's own condition.

In general, Neurontin, followed by the anti-depressant Zoloft or Effexor seem to have the most likely chance of improving the person affected by the condition of the person, and will often provide the sufferer with near remission or better.

Best wishes,

Karl
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Unread 01-22-2012, 03:53 PM   #4
Cal1700
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Default Early Warning Sign Of ERYTHROMELALGIA- Pulling covers off feet at night

Just a note on the Erythromelalgia (EM).

The first warning sign of Erythromelalgia is that your feet get so hot and painful that you need to pull the covers off your feet at night. These hot feet are often preceded by cold feet... that was what happened with me.


I have heard that over and over from the 2000+ people with EM that I have talked or written to over the last 16 years.

Best wishes,

Cal
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Unread 01-22-2012, 04:50 PM   #5
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Magnesium in lotion/cream form may be easier to tolerate.

There are several types now, and some of us use it this way now.
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Unread 01-23-2012, 04:31 PM   #6
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Quote:
Originally Posted by mrsD View Post
Magnesium in lotion/cream form may be easier to tolerate.

There are several types now, and some of us use it this way now.
Highly concentrated magnesium baths are even better in my experience. I read about a marathon runner who tried one, and he said his recovery time was much quicker.

When I felt so exhausted as if I'd run a marathon, I tried it, too, I was stunned by the speed and energy value!

This was 4 heaping tablespoons of Ancient Minerals, which I guess is 2-3 oz, for 30 mins. I haven't tried Epsom salts, but they may be just as good.

P.S. When the bath temperature isn't toasty, the Mg doesn't seem to absorb so well. The extra heat can really open up the pores?
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Unread 01-23-2012, 09:48 PM   #7
Cal1700
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Default Magnesium... Thanks-

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Highly concentrated magnesium baths are even better in my experience. I read about a marathon runner who tried one, and he said his recovery time was much quicker.
Thanks for this information. Magnesium if pretty harmless, so I am going to try this. I have the magnesium spray, and also I have the desire to try out the 'isolation tanks' that use a very high saline solution to allow the body to float.
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Unread 01-24-2012, 02:38 AM   #8
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Quote:
Originally Posted by Cal1700 View Post
Thanks for this information. Magnesium if pretty harmless, so I am going to try this. I have the magnesium spray, and also I have the desire to try out the 'isolation tanks' that use a very high saline solution to allow the body to float.
I use magnesium lotion which really helps relieve burning. Would you tell us more about the spray? Is it OTC or do you need an RX? If it's OTC what brand is it? Thanx for your help.
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Unread 03-05-2012, 02:55 PM   #9
dac122
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Default Wow, Karl Thanks!

Karl, thanks a bunch! I have TEA bookmarked but really have not used them.

I too have what would be be described by Erythromelalgia. In both feet, I have aches, burning, and redness (and hot) on the tops.

Quote:
Originally Posted by Cal1700 View Post
1) Neurontin in large doses to treat the burning pain. This is probably the most significant drug to treat Erythromelalgia.
Yes, that has worked for me. It has taken away much of the pain. Most significant is the redness does not appear much.

Quote:
Originally Posted by Cal1700 View Post
2) Diltiazem, which is a calcuim channel blocker.
This sounds interesting, but since my BP runs low, do you think they would let me try this?

Quote:
Originally Posted by Cal1700 View Post
3) Intervenous Immune Globulin (to treat my CIDP based neuropathy).
There's a new are for me to research. Thanks.

Quote:
Originally Posted by Cal1700 View Post
4) Magnesium in large doses. (The diareah that accompanies the ingestion of Magnesium can be averted with the use of acidophollis products.) Note that this magnesium treatment was later the subject of a Medical Journal Article. That study indicated that Magnesium was successfull in the useful in treating Erythromelalgia.
I have tried Chelated Magnesium, but maybe not enough, or long enough. By large does, what do you mean?


Quote:
Originally Posted by Cal1700 View Post
The Erythrmelalgia Association (TEA) has a good sized library of literature on treating this disorder which is available for free to their members. TEA is a non-profit organization. The membership fee is tax deductible.
I am a member, but did not know there was a library. How do you get to that?


Quote:
Originally Posted by Cal1700 View Post
In general, Neurontin, followed by the anti-depressant Zoloft or Effexor seem to have the most likely chance of improving the person affected by the condition of the person, and will often provide the sufferer with near remission or better.
Wow, did not know about that treatment option. Thanks!
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Unread 09-23-2012, 07:14 PM   #10
bernadettemarie
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Default magnesuim lotion or spray

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Originally Posted by antonina View Post
I use magnesium lotion which really helps relieve burning. Would you tell us more about the spray? Is it OTC or do you need an RX? If it's OTC what brand is it? Thanx for your help.
I have neuropathy and erythemelgia....would be interested in knowing where you got the magnesium lotion.\ or spray..thanks
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