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)

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

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

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

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:

Quote:

Originally Posted by Mariel (Post 774707)

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.

Quote:

Originally Posted by Marlene (Post 909632)

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