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

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.

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.

Lyn

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.

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.

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. :(

Mrs. D. Going right to the med closet now to get out the magnesium lotion. Thanks some more.

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

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!

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.

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
 

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.

Since this thread started, CVS has discontinued the wonderful
Epsom lotion! I was sooooo mad when I went in there and found that out!

Epsom-IT:
This location is affordable:
http://www.myfootshop.com/detail.asp?productid=899
$6.20 shipping for me.

Close to what you paid. I bought 3 bottles in my last visit to CVS..so this should last me a year or so. I find a little goes a long way for me.

circulating foot baths help
 

Hi Marie - I have foot problems that range from pins and needles, numbness,burning,freezzing to excruciating pain depending on what I'm doing and what kind of day or night I am having. Walking on tile feels like walking barefoot on a skating rink.I used to be constantly barefoot unless I absolutely had to where shoes. Now I always have to have something comfortable on my feet, usually lined slippers or plastic clogs with socks. I invested in a circulating foot bath with a heat control which I use with epsom salts. If I soak my feet in the foot spa for 20 minutes or so I find that it does help relieve the symptoms for a decent amount of time. I highly recommend it as well as always wearing something comfortable on your feet. Also, if there is someone around to help, a good foot massage helps with circulation, but sometimes it hurts too much for that. I hope you find some relief. John

hello
 

I have the constant feet burning my toes feel like they are gonna fall off my foot on one leg it affects my whole side i remember i had this happen to my right side 9 yrs ago I was so in pain i couldn't turn my kneck now its on the leftside my doctors say it mearalgia paraesthetic and i have diabetice neuropathy in my feet I really feel they made a wrong diagnosis every time i look up my symtoms on the web the disease ms comes up I feel bad in the morning since 2010 i had some cancer surgery that affected it to i am not able to work its got me in pain all the time is it ms thanks help me out any ideas, I live in massachusetts and there is a diabetes clinic called joslin diabetes clinic I may lok into being seen there with my ailments thanks jeff from lowell ma
:winky:

At night time is the worst. I have actually touched the bottoms of my feet to see if they are burning up. As some one else said I love to rub them on a rouhg or slightly rough surface to help but sometimes it makes it worse because then I can't stop. At times I have stuck my feet out from under the covers until I am about to finally drift into sleep and then pull in under the covers. I can't believe what it is about lying down that makes it so. If I have to get up to the bathroom there is no pain but lie down and there it is again. I also take Klonopin for it and it is a lot better, not gone but better.

My feet are about back to where they were years ago, when the predominant problem was neuropathic. In other words, they burn and hurt some, but I can walk with low level pain.
But the acute pain is not there now. I think this is because I improved the vascular condition by taking p32 in Mayo Scottsdale in February. This lowered my platelet count dramatically, from a million and a half to 500,000 or so. Doydie, I find I do need the Klonopin, as you do. I went a few days without it, because my dose is so low that someone said I could easily stop it. Yes, I was able to stop without any "cravings", but I found within three days a big increase in electrical feelings all over, back, feet, various places. So I can see the Klonopin is valuable in easing this.
My feet at night cannot have any pressure on them, so arranging the bedding is a constant "study" with me. I do find there is nighttime help if I exercise my feet quite a bit before climbing beneath the sheets to await the night's verdict of whether I will sleep. I MUST exercise the toes or the burning will worsen.

Hello Jeff, Welcome to our home. Yes burning feet can be a sx of MS, but it may also be a sx of many diseases, including Diabetes.

I hope you don't have to add MS to your plate and I hope your Doc can find relief for your pain.

You are welcome here and Best wishes to you.:hug:

I also have this miserable pain in my feet and the only thing I use that works somewhat is Neuragen. I get this at Walgreens in the diabetic section.

Welcome, Jeff. I live in central MA and may look into the clinic you suggested - thanks. This pain can also come from chemo treatments.

ms er since 'O6: Yes, my pain in the feet was made much worse by the chemo treatments I was on last year for Polycythemia Vera. The chemo was Hydroxyurea to lower platelets, then I tried Interferon A and then the advanced form of Interferon called Pegasys. One toe turned purple and the feet had to be propped up all the time and I was on demerol. I couldn't get up to a therapeutic dose on these drugs, so the suffering was of no avail. the p32 (radioactive phosphorus) lowered the platelets without side effects, but it may (possibly) give me leukemia. My dad died of leukemia and also my uncle so that may happen, but may not. I HATE chemo. To think nothing better is available for most folks. I know there are "alternate" treatments offered but they are not for everyone. My feeling right now is that medical science has mostly failed in treating these long-term diseases. We keep talking about improving medical care but we don't have outstanding care now, if you look at it objectively.

Hi Mariel,

John's nerve damage was from chemo/antibiotics also. Have you tried any nutrients that support mitochondrial support like R-lipoic Acid, CoQ 10 and ALC (acetly-l-carnatine). John too sported the color purple on his feet. The tops were purple and bottoms were white. We first started with the B vitamins, then the Lipoic Acid. The lipoic acid really helped. He also used the Rebuilder and got quite a bit of relief from that. So he's gone from from a 9-10 on the pain scale to a 1. It took quite a while. So he still has issues but his feet continue to heal. He also did chiropractic adjustments which fixed his gait and improved his balance. I give him reflexology treatments and use high grade essential oils on feet. He doesn't like getting the treatment but like the result once I'm done with it.

Like you,medical science had nothing for him either. We had to do what we could to improve his health without the support from orthodox medicine.

Laurie D
 

Hi, thank you for all of the helpful hints. My feet and toes are red. My doc said it's probably renauds. I am taking b's, but I will try some of your suggestions.
I also had painful, burning feet for about 7 months, and it has subsided to being very tolerable. I never knew about the magnesium lotion so I'm thankful to have some hope for any future issues.
Laurie

Marlene, I take Alpha-Lipoc acid. Is that the same as R-Lipoic? I am glad to hear it helps this, will continue, maybe increase amount. I do get a small amount of Co-Q-10 in my sublingual B Vitamins from Source Naturals. But it's small. Years ago I tried l/4 of the larger dose my husband took of Co-Q-10 and had a bad reaction, spasticity very bad, locked up--I believe this reaction is because I have Porphyria, and it could have been from an additive in the pill rather than the Co-Q 10 itself. Anyway, I get 11 mg of Co-Q-Ten in my Source Naturals Multiple B's. Those of us with Porphyria start low on all drugs in case of unexpected reaction, as some drugs/supplements are not categorized as Safe/Unsafe, primarily because patients have not reported in about their reactions to the Safe/unsafe drug list managers. I tried Acetyl Carnatine many years ago, long before porphyria dx or even MS dx, and it was a "hoot". I took one before bed and during the night I had a mis-sensation that my nose was four feet long. I realized it was the Carnatine, the only new thing I took at the advice of a doctor who specialized in Chronic Fatigue. It happened again that night, but never again after I discontinued the Carnatine. Needless to say the doctor was not interested in following up on this. They rarely want to see "what else" might be going on, even if they are specialists. If it doesn't fit their model, phooey.

Let me know about the R Lipoic vs Alpha Lipoic, please.

Hi Mariel,

The R form of Lipoic Acid is determined to be more biologically active, therefore, you don't need to take as much. John first started with the Alpha form, I think 600 mg/day. He now uses the R form, about 150 mg/day. So if you switch, you may want to start at half the dose of the Alpha you are taking. If I remember correctly, the original study for Alpha Lipoic Acid was done in Germany with diabetics who had neuropathy and the dose was 900 mg/day. John never got to that dose. Like you, he starts with a lower amount and works up to a normal dose, but for other reasons.

The Porphyria sure poses a challenge for you. And yeah, the additives in supplement can be troublesome to figure out....is it the nutrient, is the additive or is it what the nutrient is derived from. And enteric coatings can contain phthlates.

And....a four foot nose!? How wild.

Thanks for the R Lipoic information, Marlene, I will buy that kind next time.

Marlene, the four foot nose was THERE, I tell you! Only in imagination, but I am not telling a fib. I didn't measure it, of course, estimating the length.