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01-22-2012, 09:12 AM | #1 | ||
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Junior Member
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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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01-22-2012, 09:36 AM | #2 | |||
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Wisest Elder Ever
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Welcome to NeuroTalk:
Please do tell us what works for you.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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01-22-2012, 03:31 PM | #3 | ||
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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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01-22-2012, 03:53 PM | #4 | ||
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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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"Thanks for this!" says: | EdmundUK (04-10-2016) |
01-22-2012, 04:50 PM | #5 | |||
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Wisest Elder Ever
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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.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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01-23-2012, 04:31 PM | #6 | ||
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Quote:
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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01-23-2012, 09:48 PM | #7 | ||
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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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01-24-2012, 02:38 AM | #8 | ||
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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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03-05-2012, 02:55 PM | #9 | ||||
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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:
This sounds interesting, but since my BP runs low, do you think they would let me try this? Quote:
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Wow, did not know about that treatment option. Thanks! |
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09-23-2012, 07:14 PM | #10 | ||
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Junior Member
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I have neuropathy and erythemelgia....would be interested in knowing where you got the magnesium lotion.\ or spray..thanks
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