Didn't know erythromelalgia was a neuro illness

[Mariel]

I got it a couple of years ago, and soon was dx'd with Essential Thrombocythemia. Some of those with ET have erythromelalgia. I thought it was probably that the blood is a little thick (too many platelets and sometimes too many red cells) formed through a mutation in the bone marrow. I have mine under good control taking l/2 aspirin a day. I have to take the aspirin by grinding it and mixing with cream to put on my skin. This works and takes down the redness and soreness of the feet. My hands also get red, but the redness declines also with aspirin. I also have phlebotomies every month to keep my hematocrit down.

I have been on the braintalk MS forum for years. I also have Porphyria, which does indeed cause neuro effects. I was the first poster on the Porphyria forum but it has been inactive for years. So I have lots of stuff jumping in my joint!

[GardeniaGirl]

Hi there - I have been a member of these forums for a long time, but just came to this one for the first time today.

I have this horrid condition in my feet, secondary to inflammatory arthritis.

It is so terribly painful.

I am on a low-dose of morphine, which is a vasodialtor, which make the erythromelalgia worse.

If you could tell me any more about the aspirin you use on your feet, I would greatly appreciate it.

What really helped me a few years ago, before I was put on the morphine, was taking magnesium every day. I think if you type erythromelalgia and magnesium into google you will pull up a bunch of links.

But that doesn't work for me now that I am on morphine - so I need an alternative solution.

thanks!
Gardenia Girl

[Mariel]

Hi, Gardenia Girl. I did not know that morphine was a vasodilator. I take demerol for pain, but a small dose (l2 l/2 mg) and usually only every third or fourth day. I went two weeks without it when my pain was less recently. I don't know if it has the same vasodilation as morphine.

I take 1000 mg of magnesium daily. Have to do this to stop myoclonus (jerking of muscles in lower back) at night.

The aspirin I take is uncoated. I put it in a little bowl (now am using a small container in which face cream had been). First I cut it with a pill cutter into four parts. It is a whole aspirin, not a baby. Then I take a table knife and use the end ot the handle whicih is sort of like a pestle. I grind up the aspirin as fine as I can get it. Then I put some body lotion in the ground up powder, enough to be able to easily spread it. I mix thoroughly.

I was using about l/4 of this mixture per day, but now I have upped it to about l/3 or even l/2 a day. At this rate I can remove most of the redness and soreness in my feet, and the palms of my hands become less red. So I and the doctor can see it is working.

You can rub it anywhere on your skin. The doctor suggested I put part of it on my sore toes, on the bottoms. I put some on my ankles, the front of my legs, and my arms. I have even put it on my face or throat. Possibly it's best to put it where the skin is thin, as on the ankles or chest, for absorbtion, but as far as I can see it works anywhere you put it. I use Aubrey's skin lotion because it's pure and has none of the bad additives which are in most of the skin lotions you find at the supermarket (propylene glyclol, for instance). I usually use Aubrey's "Moist" or
"Rosa Mosqueta".

I do not know if this treatment would treat your condition. I hope so.

I don't use aspercreme, which you can buy at the supermarket pharamacy, because it is not "measured" as to dose, and because it has some additives I don't want in it. We don't need these additives because they do go into your skin; we can see that this happens when you see the results of the aspirin cream.

I don't think my foot pain is due to vasodilation; I think it could be due to the excess blood proteins (platelets, hemoglobin) which come with Essential Thrombocythemia or Polycythemia Vera. These proteins are made in the bone marrow due to a mutated stem cell. It may be different to what you have with the inflammatory arthritis.

Boswellia in one inflammatory I can take a little of. With porphyria, another disease, I have to be careful which supplements or drugs I take. I can take one/third of a Boswellia cap. You might be able to take the whole cap. But if you try this, start with one-third cap in diluted juice, well stirred. I do have inflammation in various parts of my body, due to degenerative disk or joint disease. I don't know if that's called inflammtory arthritis--I have not heard it called such but I do have inflammation, especially in back and shoulders.

Mariel

[GardeniaGirl]

Hi Mariel - thanks for getting back to me.

I will discuss the aspirin treatment with my rheumatologist next week. He is the one who diagnosed me with erythromelalgia over 4 years ago.

I cannot take hot baths or go in hot tubs anymore. And I have started taking very short showers. The heat turns my feet bright red and very painful.

Anyway, thank you again for the information - I will try anything to see if it helps.

GG

[Mariel]

In my case the aspirin cream definitely helps. Before I found a way to get aspirin into me, my feet also were bright red. I don't have trouble with warm water, though. In fact I soak my feet in warm water with dead sea salts. Has magnesium in it, which is said to help erythromelalgia.