NeuroTalk Support Groups - How many have burning, painful foot neuropathy?

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- - How many have burning, painful foot neuropathy? (https://www.neurotalk.org/multiple-sclerosis/151055-burning-painful-foot-neuropathy.html)

hint: do NOT use hot water in the bath.

Only lukewarm or cool with the epsom salts. Don't want to stimulate those heat receptors!

Dejibo, three miles! That's very good!

Mrs. D. I got so busy I forgot the foot stuff, but I'm going to get it out today. One reason I forgot is because my feet are less painful today than average, but I still need it.

I would be afraid to use the menthol even in very low percentage. It is one of the worst
things for Porphyria. It is in eucalyptus trees, and I discovered how bad those were when we lived in CA in a condo under a euc forest. I was even putting euc oil in the
air conditioner--completely ignorant because I did not have a dx. If I had known what to do it would have saved SO much anxiety and grief, especially for my husband. I do drink
green tea and am not sure whether yerba Matte would be OK . I will ask the person who
specializes in such things on the Porph forum.

Today, thinking about "over heat", which I do have due to Polycythemia Vera (verified by
doctors of oriental medicine) I remembered that I have a bottle of herbs from Evergreen
herb company, which are anti-heat. I took them last August and they were OK for me.
I am starting them again today, in small dose as always.

I will get out the mag oil now. A million thanks, Mrs. D. You have a amazing knowledge.

I have this mostly at night. I take 1/4 of a 20mg Klonopin and it does 2 things.....stops the pain and puts me to sleep.

Mrs. D, I could not find my magnesium lotion, it must have got lost in transit from Seattle, where I was last year until I broke my knee (fell down stairs due to neuropathy).
I went to CVS online to ask what ingredients were in their Epsom Lotion. Probably it's fine, as it says "unscented", but I need to know what's in it. I called but they were closed. I
will try again tomorrow.

My feet are pretty good today. about 80% better than when I was on Hydrea or Interferon. I could walk to the clinic from my car, where I had a CBC today,
and into the library to seek the research desk aid to inquire about side effects of
the radiation treatment p32 (Potassium version) for Polycythemia Vera, and I
also shopped at the market! Getting around as well as most people, and my
balance was only slightly off. That's my marathon equivalent to Dejibo's walk of
three miles! but now, down for the evening. I am waiting for research desk
aid--very nice librarian at that desk. We have an outstanding library here in
Los Alamos, which is something one would expect with all of the research
scientists here. We have more Ph.D.'s in science per capita than any town in the
USA, and 11 cases of Polycythemia Vera (that is a cluster).

Sally and Mrs. D, you are quite right that the small amount of soy oil in the capsules Sally bought will probably be fine for her. In my case, I probably could not digest them, as I get
indigestion from most soy oil...so it's better for me to use the Twin Lab non-oily D3. I do
take the capsules with the oil or fat that I DO use, such as eggs, bread, mayonnaise, etc.
I use a brand of mayonnaise that has both canola and flax in it. I know that canola is not the best, but I can tolerate this flax oil and I can't tolerate every flax oil, so by experimentation I have found a small source of Omega 3.

Quote:

Originally Posted by mrsD (Post 774709)

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.

mrs.D, thank you so much.
I woke up to the worst 'Charley Horse' cramp in my calf muscle. After I finally go it to calm down, it had the ache and pain in it all day. We went out to stores today and I got that CVS Epsom Lotion. It's new so paid $10.50. A large 8 oz. bottle goes a long way I think. By the time I got home my calf was still so very sore.

I put on the lotion and rubbed it in. I used a thin rubber glove because I wasn't sure if my hand would have a bad effect. The leg I would wash right off. But no problems. It goes right in to the skin. Great stuff. I love it!

It took the pain and soreness away almost instantly. It is incredible lotion. I plan on trying it on my burning feet and legs tonight after my shower. I hope it keeps the muscle cramps and/or spasms away, and if it helps with bad burning, I'll kiss your feet. :hug:

PS: I take a lot of Potassium and Magnesium. I think my HCTZ for BP, is making me lose all the good stuff.

The ingredients for the lotion are on the link I gave:

http://www.cvs.com/CVSApp/catalog/sh...#Prodtabdetail

I just noticed, capsicum! I get absolutely NO burning from this so I wonder how much is really in there? I wish they would give a concentration for the magnesium, too.

I am glad that it is working for you, Lady. I find it very relaxing when I go to bed...seems I have tense muscles alot of the time for some reason.

i had not ordered the Epsom rub from CVS, because I was occupied over the weekend and only remembered to call at night, when they were closed, so last night, when feet were burning badly from all that activity, I made some magnesium cream myself. I opened one capsule of Magnesium Taurate and mixed it in a small empty bottle with Badger Healing Balm, which I buy at the Co-op. I put it on my toes, the bottoms especially, and let it "dry" before putting my socks back on.

Helped! Today, I would say that my toe pain is way down. Only place that hurts today is the bottom of the right big toe. So I will continue this.

I expect this would work with any thick cream, but Badger Balm is especially soothing.

I looked now, Mrs. D., at the ingredients in the Epsom cream from CVS. There are a few things in there which I usually avoid, so probably it's better for me to use my home brew. I just realized today when you mentioned it that the ingredients for the CVD product were posted there.

replyfrom jemjeff

Quote:

Originally Posted by Mariel (Post 774707)

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

hello mareil wow I have that same pain my feet burn and feel like i jumped from the empire state building ! I had other symtoms that gave me the idea that i may have ms i have had this for a long time i had to quit working because of it my left leg has these lightning bolt pain ache burn my doc said i have meralgia paraesthetica a pinched nerve that is causing the leg pain but over the years i have lost the strenth in my left side it has weakend me ! I am type 2 diabetic and i hate it I got so disabled from my pain its auwfull I really think that this is gonna get worst to the point that i will need a wheel chair I just have lost strenth from all this stuff going on I had some stomach cancer had a tumor removed and i am cancer free I was glad i had that colonoscopy done cause i had a rare form of cancer in my belly they took out a tumor so what esle is next good luck any ideas on getting my pain down let me know I have taken my alpha lipoic acid suppliments and b-12 leichen.enchineacha.turmeric. i take neurontin meds asprin.and i am still in pain all day thinkin about TENS treatment nest

[QUOTE=Lynn;774858]Hi Mariel

- it is like rubbing sand into a case of really bad sunburn.

This is a really good description of what I feel also. My doc suggested Lyrica, but I have stayed away from more drugs until I feel I can no longer stand it.
I just purchased the Epsom It foot lotion on Ebay for 17.99 with free shipping. Could not find it on CVS site. Other sites sell for 10.00 or so but shipping was high.