Small fiber neuropathy not getting better or worse - advice?
 

My feet have been burning for 3.5 years now, which was probably caused by prescription drugs ( I stopped taking them soon after my symptoms appeared). For the past few years it hasn't really gotten better or worse. I've had tons of tests done and everything has turned out normal. I've even had a skin punch biopsy (they took a sample from just above my ankle) and the nerve fibers in that were normal.

The pain is tolerable if there isn't much pressure on my feet, but if I'm standing for a while it starts to get pretty bad. I also found out that if I have a couple alcoholic drinks, it can get really bad for the next week or so afterward.

I've tried lots of supplements, acupuncture, Anodyne therapy, and nothing has helped. Is there anything else (other than drugs to mask the pain) I could try? Or perhaps it could also be a condition besides neuropathy? I'm only in my 20's, so the idea that I might have this for the rest of my life is frustrating.

Any advice is appreciated!

Hi,

Well 3.5 years isn't exactly a day at the beach. You mention that you took supplements. Were they ones that you read about here from other members, or at other sites regarding non-medication remedies for PN?

Some of us have been helped quite a lot by taking supplements that our supplements guru, MrsD, recommends. She's on vacation but said she'll keep an eye on the threads while away. Coming back in early September, I think. It's possible she might even reply to your thread before then.

I haven't taken Alka Seltzer, but others have and it sometimes works for some when things get really rough. MrsD also recommended that.

Sheltiemom18

You have my sympathy
 

I also suffer from burning feet, the pain gets unbeable at night time and as Sheltiemom said Alkaseltzer helps me to get enough relief to fall asleep.
I also try lukewarm Epsom salts footbaths, I need to steep for at least 30mins and the relief can carry on to the next day.
I am trying to replace the footbaths with Magnesium oil, only due to my skin becoming like leather with the footbaths
The other relief I get is from Lignacaine Infusions from my Pain Management team, this gives me around 3 weeks relief at a time. I go into hospital for a 90min infusion and experience 3 days of increased pain and then the pain settles for 3 weeks and slowly comes back, i only have the infusion every 6-8 weeks.
Good luck

Hi
I am so sorry you have to go through this at such a young age. It’s not fun at any age so I can’t imagine being your age with it.

Have your doctors mentioned Erythromelalgia to you? You are so young that even if they have heard of it they might not think of it. Usually people get this when they are older but some get it very young and in the young it is often hereditary. Does anyone else in your family have symptoms?

This disorder goes largely undiagnosed because most doctors don’t recognize it. Symptoms often times do not manifest during the day so even if you have a doctor appointment doctors don’t always get a chance to see it firsthand.

This may or may not be what you have and I hope it isn’t but since we have the same symptoms I thought it was worth mentioning. Should you wish more information you can go to www.erythromelalgia.org
I will pray you do not have this but thought it worth mentioning. I suffered for two years before being diagnosed. It was a horrible two years in indescribable pain that no one understand. My pain is now fairly controlled by pain meds that target nerve pain so yes there is treatment to make this easier if this is what you have. Even if what you have is PN the same med’s would apply, find a doctor that will help you with this.

My advice is to not give up hope or give up looking for a doctor that wants to help you. Sometimes if they don’t know what it is they just give up, you need someone that will continue to look until they figure it out. Those doctors are just as rare as the disorder. I wish you all the best in your search for answers.

Being at a young age gives you the best possible chance of reversing your condition. Maybe start with your diet by eating organic foods if you can afford it along with the all the supplements mentioned on these threads.

alcohol is a major trigger, I get shooting pains from just one mouthful of beer instantly although they decrease and disappear after the 50th :D

I take 2000mg of b12Methylcobalamin daily and it helps immensely with the burning. If i stop for a few weeks the burning becomes much worse

Thanks for the responses!

I didn't notice the supplements subforum. It looks like the best things to start out with is Vitamin D and Methylcobalamin? I've taken those before, but I can give it another shot.

Ha, I never would have guessed Alkaseltzer. I'll keep that in mind if I need some temporary relief.

I hadn't heard of Erythromelalgia before, but I've never had any swelling or redness, and my feet were checked out by a rheumatologist who said everything was normal. Does that mean I don't have it?

Does anyone have a recommendation for a good doctor in Minnesota? I've seen 2 neurologists in Fargo, ND and they're not bad, but obviously they haven't found the exact problem.

I'm also considering trying the Rebuilder if I can get my insurance to pay for it. I know results have been mixed on that, but it might be worth a shot...

I also have bad pain when standing and tested normal on skin biopsy
I'm 43 and have had this for 3+ years. Have you had an MRI?

I've had an MRI of my brain and my lower back. Do you mean of my feet?

Hi NorahS - you've posted that your doctor has literally saved you because EM is relatively rare and often misdiagnosed. You also posted that he is a Pain Management doc, not a neurologist, and that he is on the West Coast. Do you have any objection to divulging his name?

Sheltiemom18

I was asking about your back.

Sheltiemom,
I just sent you a private message, let me know if you don't get it, I'm kind of new doing that.

Yes, I did and sent you one back. Thanks very much.

Di you try pens therapie(Percutane Elektrische Neurostimulatie) its something simulair to the rebuilder used in the US.
I can say for sure that it helpes with pain but i am not sure it helpes with burning pain.
I got a neuropathie because i used dapsone a anti bacterial poison..

Currently i am reading 2 books about hyperbaric medicine has any of you give this a thought in the past

I've never heard of PENS, but I tried acupuncture where I got needles put into my feet and they were electrically stimulated. Is that similar?

I don't know much hyperbaric medicine. What are you finding out?

Hey I'm 21 and in the same boat as you. Ive had small fiber neuropathy for over a year now but it was on diagnosed in January 2011 by one of the top neuropathy specialists in the country at Massachusetts General Hospital. This whole radiating pain thing is UNBEARABLE i dont know how you have dealt with it for that many years. Doctors have put me on Gabapentin, Lyrica, muscle spasm meds, flexirel, and now finally Methadone (which i stopped taking) how do you deal the the burning pain? I have it in my arms (finger tips to elbows) and my legs (feet to my knees) does anything help you?????

Yes - try the Duragesic Patch - also known as the Fentanl Transdermal System. I've had PN for over 21 years and this is what I have been using since 1-9-02. I'm presently using a 50 and a 100 strength patches changing them every 2 days. It reduces my 7 to 9 pain down to 2 to 4 levels. Doesn't work for everyone but certainly worth a try.

It sounds like you have it worse than me. I suppose I should be thankful!

I try not to be on my feet more than I have to during the day. If it gets bad, sometimes soaking my feet in hot or cold water helps. If it's bad when I go to bed, keeping my feet above the covers so they're well ventilated seems to help. Throughout the day, keeping them at a normal temperature (not too hot or too cold) sometimes seems to prevent it from getting bad. Also, I don't drink alcohol (my condition started soon after I reached legal age – ironic, right?). On average, it's tolerable for me, but it sucks having to suffer through it, and it's frustrating to feel so limited. I don't know if I've been any help, but I hope you find something that works for you.

How did you find the neuropathy specialist?

Bumping up:
 

@Bis...

Have you tried Benfotiamine? This special B1 form is helpful for those who have reactions to alcohol. Our alcohol metabolism involves other alcohols in food besides ethanol, and it also involves carbohydrate metabolism. 300mg a day for a month will show if you respond to this as a trigger.

Also r-lipoic acid is helpful too. 100mg a day of the stabilized form on an empty stomach.

Burning for me responds to Biofreeze gel. This can tide you over until the supplements start working.

Yes, I was on vacation during this thread. The AlkaSeltzer is helpful, but don't rely on it heavily, because of the aspirin content. Use wisely for the worst burning times. It blocks histamine receptors which may be the cause of some burning issues in some people. Only use if you are allowed aspirin and are not taking blood thinners, etc.

Any other ????.... Please use this thread for those.;)

Ok, I'll try those two supplements. I've got some methylcobalamin I can start taking again too, if you think that would be helpful.

I also often have pain that isn't really burning, but more like aching or soreness - usually from pressure on my feet from things like standing or wearing tight shoes. It feels like I've been on my feet the entire day even though it may have only been an hour or less. I guess I've been assuming this particular symptom is common with the burning. That wouldn't make any difference in your recommendation, would it?

Feet that hurt only when standing....hmmmmm.

Have you been to a good podiatrist to check for falling arches,
arthritis spots, sesamoid bone problems, spurs, etc etc?
If your feet hurt more when you are on them, I'd check them out carefully. My feet hurt more in bed, and I've several issues
with them including the PN. That is why you see me offering many solutions, because I've had to try them all!

There are many mechanical issues with the feet and ankles...
This site is just fabulous...you could spend days there really reading all the details!

http://www.northcoastfootcare.com/

There are diagnostic help sections to identify problem areas on that site too.

Another thing to consider is magnesium supplements...and/or lotions with magnesium in them.
CVS Epsom lotion ( in CVS stores--ask them to order if you can't find it)

Epsom-IT (slightly more expensive and online)

Kirkman magnesium cream (online only).

When you rub this in...you will find it very very helpful. Doing it regularly will help more.

My magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

Magnesium improves blood flow to the extremities and also is important for over 100 other critical functions including your heart, muscles and brain.

I'll look through those pages.

They don't hurt only when standing, but standing definitely makes them hurt more. Sometimes when I've barely been on my feet, they start burning somewhat badly at night or when they're warm. I never have seen a foot doctor about this, so maybe that would be wise.

Try the Biofreeze. You can get it now on Amazon at a good price.

The menthol in the gel blocks heat signaling nerves and works for several hours to stop burning. It is very good when you are trying to fall asleep. The gel is different from other products. Also it has Ilex in it which is an herb from S.America that has antioxidants in it.
I think the antioxidant action is very helpful in this product.

There is a new product by BenGay, called Cold Therapy. But I haven't tried it yet. Next time I go to WalMart (possibly this week) I'll look for it. I just saw it on TV the other day.
Looks similar to Biofreeze without the Ilex however.

mrsD, does BioFreeze have a smell, like a menthol smell? Or is it odorless?

Thanks!

Right out of the tube there is a menthol odor. But it disappears in minutes very quickly. So the overall effect is odorless to humans at least. It is really an elegant gel base...no residue on the skin, etc. I hate sloppy ointments myself so I like it.

Can't say what the kitties smell however! ;)