1. < Neuropathy

My experience with Small Fiber Neuropathy

Posted by djroberts @djroberts, Oct 9, 2018

Hi there. Thank you to all the people who support this forum.

I believe I have Small Fiber Neuropathy. It's been a struggle to get doctors to believe something is wrong. I have one now that believes me but believes but this seems to be all new information for her. I met with neurologists and they said I was fine. I passed all their normal tests and they seem to imply it was psychological. I'm still trying to get tested and get an official diagnosis. It's possible I'm wrong but given the symptoms I have it seems unlikely.

I was a drinker for years. I brewed beer and drank daily. I also have had high cholesterol for many years. The drinking certainly affected the cholesterol. A couple of years ago I started getting very sharp stabbing pains in my toes in the evening. I can't say if it was when I was drinking or not because I know these symptoms are more common at night and that's when I drank. I started to get pins and needles shortly after mostly in my feet and occasionally in my hands. I would get a stabbing pain in my thigh and foot at the same time.

A few other notes:
1. I have impaired fasting glucose in the pre-diabetic range.
2. I've had high cholesterol for many years. It's getting better with diet and exercise.
3. History of alcohol use. I've almost entirely quick alcohol. I've had a couple of drinks in that last couple of weeks but I may quit entirely.
4. I haven't found much that helps except for reducing alcohol but lately even that doesn't seem to help.
5. It's my perception that stress increases the symptoms.
6. Exercise seems to help. Even just moving around. Switching to a standing desk as well although I'm not sure.

I'm mostly just sharing to see if there's anyone who can benefit or help me. I'm doing a lot of reading right now and don't have many conclusions.

Interested in more discussions like this? Go to the Neuropathy Support Group.

issacmrobinson77 | @issacmrobinson77 | May 19, 2022

Man thanks for the response and the helpful information you sent. I'm so glad I signed up here. It's almost as if we are all alone and suffering around people who don't understand us within our social lives. Now I can speak and relate to others like me without feeling like I'm speaking to (myself) others who can't possibly relate.

Thanks again

REPLY
joypalmer1 | @joypalmer1 | May 20, 2022
In reply to @issacmrobinson77 "Here is the issue with your test. They are testing your large fiber nerves. The large..." + (show)
@issacmrobinson77

Here is the issue with your test. They are testing your large fiber nerves. The large fiber nerve test in most cases will come up negative for any issues. The large fiber test can't detect small fiber nerve issues. To get the correct test for the small fiber nerves you must get a biopsy of the skin from a specialist who is knowledgeable about small fiber neuropathy. I have a very serious case of SFN and it took 20 years for a diagnosis through a skin biopsy. They all thought I was crazy. With the pain I was getting I knew I wasn't crazy. With mine I get a devastating itch, burn, stabbing, electric needle stabs all over my body. The itching part is one of the worst parts. My symptoms come about emotionally, physically, mentally, by the heat, by the sun, during the winter times, after hot showers eating spicey foods, eating sweets, exercising, sleeping and dreaming, working, and alcohol consumption. I too felt as if life was hopeless but I still fight on. I take many meds and am still trying to find the cause of my issues. I know more about SFN than most of the Dr's I see which is very frustrating. Just don't give up, question every weird blood result and don't allow anyone to make you feel as if you are crazy and finally demand a skin biopsy for the test. See a heamotologist a rheumatologist an endocrinologist, dermatologist and of course your neurologist and hopefully you will figure things out.

Best of wishes

Jump to this post

I have a condition called brachiordial pruritus which is a condition that comes and goes and causing terrible itching on my arms. I don’t know if you are familiar with it, but the only thing that helps it is using ice packs. In fact, that is one of the ways they diagnosis it. Prescription creams don’t help at all. Many nights I go to sleep and lean on ice packs. I wanted to recommend you try ice, if you haven’t. It’s the only thing that has brought me relief.

REPLY
1 reply
dantic123 | @dantic123 | May 23, 2022
In reply to @fbell330 "I to have small fiber neuropathy due to drinking and being prescribed flagyl for an infection...." + (show)
@fbell330

I to have small fiber neuropathy due to drinking and being prescribed flagyl for an infection.
When I first stopped drinking my feet hurt, burned,felt bruised on the bottom. I was crippled. I started researching and found that taking B vitamins would help . WARNING they will help if you are deficient I was not and it set my feet and legs on Fire. I was in such pain I contemplated suicide. Always consult a doctor never self medicate even with vitamins. I stopped taking the vitamins and was prescribed cymbalta. I could not handle the side effects of cymbalta so I switch to amitriptyline. Between amitriptyline and physical therapy to strengthen my feet and legs I have got my life back. If a doctor tells you that you are going to have to live with the pain see someone else. There is hope out there. I spent thousands of dollars and saw multiple doctors before I found any relief. I just had nerve decompression surgery on my right leg . Six weeks post OP I have increased strength and the constant vibration that I was experiencing is gone. It's still to early to tell if the surgery is worth it .
DON'T GIVE UP HOPE

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Nice to see another person who had the decompression surgery. I just finished up my second leg and it already only one week after and I feel its going to be a Win Win. my first leg had it done in January and walk as if nothing was ever wrong. There are area's in feet that were damaged that could not be repaired. I can hardly wait to get bandages off and start walking normally again.
As to the drinking yes I am an alcoholic with no drinks now in 10 years. it did contribute a lot to what was going on early on.
As to gabapentin..... I did take this for many years but my pain level was to far gone for this drug. I an now on lyrica or the generic to it , pregabalin 300s twice a days.

REPLY
issacmrobinson77 | @issacmrobinson77 | May 23, 2022
In reply to @joypalmer1 "I have a condition called brachiordial pruritus which is a condition that comes and goes and..." + (show)
@joypalmer1

I have a condition called brachiordial pruritus which is a condition that comes and goes and causing terrible itching on my arms. I don’t know if you are familiar with it, but the only thing that helps it is using ice packs. In fact, that is one of the ways they diagnosis it. Prescription creams don’t help at all. Many nights I go to sleep and lean on ice packs. I wanted to recommend you try ice, if you haven’t. It’s the only thing that has brought me relief.

Jump to this post

Yea, I use to think I had pruritis too. I think that term is used when noone wants to go through the hassle of getting people the correct test to get a diagnosis. My small fiber neuropathy is also releived through cold and many times that doesn't work. They told me I had pruritis for about 13 years until finally my neurologist sent me to get the right test. I used lotions of many types and many different allergy pills that dont work. Some creams give me relief but thats ify. I would suggest that you go to a neurologist and have your large and small fiber nerves tested before excepting you have pruritis.

REPLY
magnum52 | @magnum52 | May 24, 2022

I was diagnosed with Idiopathic Small Fiber Neuropathy (ISFN) 6 years ago. I have been to the Mayo Clinic in Rochester, University of Alabama in Birmingham, and Piedmont Hospital in Atlanta. I have had 3 skin biopsies, numerous MRI’s, Nerve Conduction studies, EMG’S, numerous sympathetic nerve blocks, epidurals, a spinal cord stimulator and a DRG stimulator. I have taken every drug that’s indicated for neuropathic pain. I have had EXTENSIVE blood work that is totally normal. The only abnormal tests were the skin biopsies with gave me the diagnosis of ISFN.

If your neuropathy is idiopathic. I would encourage you to see a pain specialist about spinal cord stimulation. Learn everything you can! As I have said before, medicine has failed those suffering with neuropathy. They do plenty of clinical trails, that produce absolutely nothing in terms of effective treatment. Think about it, two very popular drugs for neuropathy, gabapentin and Lyrica started out with an indication for seizures, and they have been out for years. We have had nothing new of any significance to treat neuropathy for many years.

Good luck to you!

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