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.