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Old 05-29-2011, 02:29 PM #1
Mariel Mariel is offline
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Default How many have burning, painful foot neuropathy?

I have assumed that my foot neuropathy is "mostly" due to my more recent dx, Polycythemia Vera. But I've been reading more on various sites for PV, and especially reading the comments of specialists such as Jerry Spivak of Johns Hopkins and Ruben Mesa of Mayo Scottsdale. Dr. Spivak says this foot burning thing can come from other diseases which the patient also has, such as MS!
Or from diabetes.

when my primary dx was MS years ago, I had no foot burning. I had slight
numbness in the feet which I compensated for well. I know that I had lots of
neuropathy affecting various parts of the body, including intestinal spasm which I ascribe now to neuropathy. Our typical MS "ostipation" could easily be due to
neuropathy. After all, our disease is one of "nerves" or "neuro". It was not until my platelets started to rise with Polycythemia Vera that the minor numbness turned into pain, and then five years later, severe disabling pain.
Some days I can walk well enough to shop or do housework (some of it done
from the wheelchair), some days I have to give up and splat on the couch to watch the propaganda on the television and try to discern which of it might be true (kind of like trying to get a neurological dx).

My foot pain does NOT respond to aspirin, which means that I may not have
the Erythromelalgia of Polycythemia Vera; also the doctors say my circulation is too good for Erythromelalgia, but I think I might have poor circulation just in the hurting toes.

So I remembered that the MS forum people have lots of pain. (contrary to
some neuros expectations). Do you have it specifically in foot neuropathy--
burning, sometimes stabbing, needing pain medication much of the time?

Thanks for responding. And hugs to all who have pain.

Mariel
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Old 05-29-2011, 02:38 PM #2
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Lightbulb

I would try magnesium lotion first. (I don't know what you can have orally)

Magnesium helps with the micro-circulation, which often is hard to test for.

Thick blood from polycythemia or from elevated antibody peptides tend to clog up the tiny vessels in the feet. Magnesium helps open those tiny ones and improves circulation.

A poster on PN found this new lotion, and I have been using it every night for my magnesium instead of oral and it works nicely.

http://www.cvs.com/CVSApp/catalog/sh...new_crumb=true

That would be the first thing and easiest to try.

Staying away from sugar and MSG also helps. Sugar raises triglyerides and they also clog up the vessels, because they are viscous.
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Old 05-30-2011, 07:25 AM #3
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Hi Mariel

I sometimes get a burning sensation in my feet - sometime it travels from my right foot right up to my right thigh as well. It is very uncomfortable, and keeps me awake at night, but I have to say, compared to the pain you are in, I am really lucky - it is like rubbing sand into a case of really bad sunburn.

I hope that you find something that can relieve you.

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Old 05-30-2011, 05:28 PM #4
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Mrs.D, thanks for the tip on magnesium lotion. I have some magnesium lotion which I bought years ago and did not use because it was hard to get in the bath, where they wanted it to go. I will try it on my toes. I already take about 800-1000 units of magnesium by mouth. I was told to take it twenty three years ago by a neurologist, which I could not take the MS drugs for spasticity. Magnesium keeps my legs and lower back from jerking and spasming.

I eat little sugar and no MSG.

Thanks, and thanks Lynn for your comment too.
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Old 05-30-2011, 05:34 PM #5
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Lightbulb

If you take things by mouth, and the micro vessels are blocked in the feet, the oral things cannot reach where they need to go.

Epsom salt baths work well too. But this lotion is so much more effective for me at least...targeting problem areas. I'd put on the tops of the feet, and ankles too. I did my legs this morning before working outside, and it really helped.

If you use alot, you may be able to lower your oral intake instead.
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Old 05-30-2011, 06:32 PM #6
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I sometimes feel like I am standing on hot pavement with barefeet. its aawful!
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Old 05-30-2011, 06:57 PM #7
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Quote:
Originally Posted by Dejibo View Post
I sometimes feel like I am standing on hot pavement with barefeet. its aawful!
Yep, I have that same issue. If I rub my feet on the floor and move them around it feels better, but the moment I stop, STING & BURN! To me it feels like a bad sunburn and someone slaps ya, Yyyyyeeeooouch!

Unfortunatly I'm a newbie just getting started on the diagnose garbage, so, no expertise from me, sorry.
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Old 05-30-2011, 10:41 PM #8
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Mrs. D. Going right to the med closet now to get out the magnesium lotion. Thanks some more.
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Old 05-31-2011, 05:10 AM #9
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Lightbulb

There is another intervention for burning feet... Unlike magnesium it does not really CORRECT things, but it will put the burning to sleep quickly.

Biofreeze gel. This is a fast acting gel with 3.5% menthol and an antioxidant more potent than green tea (Yerba Mate-- aka Ilex) which penetrates and stimulates the cold receptors . We have heat and cold pain signaling in our bodies. The cold ones take precedence and override the heat ones which seem to mis-fire often. So the net result is the burning stops.

This eventually wears off, but it lasts quite a while, at least for me. I think the base gel is important because Biofreeze only has 3.5% menthol in it. Other things are much higher including the new Precise cream from Tylenol... but they do not work the same way Biofreeze does. The gel base is non- greasy and goes in quickly. It is quite an elegant product.

Now available on Amazon and other online outlets for less $$ than it used to be.
http://www.amazon.com/Biofreeze-4-Oz-Tube/dp/B0014WK260
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Old 05-31-2011, 07:37 AM #10
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I am going to invest in a foot bath and some epsom lotion Thanks! I did a 3 mile walk today and im beat! my legs are wobbly and sore and I dont know if I can build enough stamina to do that MS walk or not. Whew!
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