1. < Neuropathy

Small Fiber Neuropathy

Posted by Marlene Eckert @me1229, Oct 31, 2019

I am currently on 1200 mg of Gabapentin twice daily. My pain is not totally controlled at this level. My pain level gets worse as the day goes on and is worse at night. I like my one glass of red wine at night. I wonder if that is an issue with my pain. I’ve tried adding Cymbalta that created severe dry mouth then stopped that and tried Lyrica and that was just as bad. Now my doctor wants to try increasing the Gabapentin to 3600 mg a day. Here is another point. Can anyone tell me about their experiences

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djhunt66 | @djhunt66 | Dec 8, 2024
In reply to @swartzki "My heart goes out to everyone who has shared the debilitating effects that small fiber neuropathy..." + (show)
@swartzki

My heart goes out to everyone who has shared the debilitating effects that small fiber neuropathy has bestowed upon them. I have yet to meet one other person who is experiencing hair loss because of it . I know it's the neuropathy because my head tingles and itches. I had gorgeous, thick blonde hair. Over the past three years, all of it has fallen out piece by piece. I mean ALL I can't believe what I'm seeing in the mirror, and I just cannot cope with it. I can't leave the house without a wig anymore, and I can't find one that doesn't look like a bird's nest. The anxiety from this effect alone is unbearable. It was my worst fear, and how it's here. I don't know how to adjust to this. Anyone?

Jump to this post

I am also noticing huge hair loss. I'm afraid I will also need a wig in the future if it keeps going as I'm extremely thin now on top and you can see my scalp.
What I find interesting is every single time I do wash my hair it sends me into a complete flare.
I used to wash my hair everyday, now 2 times a week because I can't deal with the after effect. Somehow I believe when washing my hair it stimulates the nerve fibers.
But, yes definitely a lot of hair loss here as well. 😞 I can relate to looking in the mirror and thinking how much this has aged me in a short time.

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1 reply
celia16 | @celia16 | Dec 8, 2024
In reply to @djhunt66 "I am also noticing huge hair loss. I'm afraid I will also need a wig in..." + (show)
@djhunt66

I am also noticing huge hair loss. I'm afraid I will also need a wig in the future if it keeps going as I'm extremely thin now on top and you can see my scalp.
What I find interesting is every single time I do wash my hair it sends me into a complete flare.
I used to wash my hair everyday, now 2 times a week because I can't deal with the after effect. Somehow I believe when washing my hair it stimulates the nerve fibers.
But, yes definitely a lot of hair loss here as well. 😞 I can relate to looking in the mirror and thinking how much this has aged me in a short time.

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I was diagnosed with B12 deficiency and with treatment multiple symptoms are improving. I’m not sure if that caused my hair loss, but am seeing dermatologist and am taking oral Minoxidil that has stopped shedding and caused new growth.

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jhumm | @jhumm | Dec 8, 2024

I am now 81 years old and I have been suffering with different degrees of PN for the past 35 years. The numbness and mild pain I had been experiencing began to get severe enough that I sought the help of a Neurologist in 2003 and after a neurological exam I received my first PN diagnosis. About 5 years ago my symptoms began to dramatically increase in intensity and I was lucky enough to accidentally find another Neurologist who was able to diagnose my idiopathic small fiber polyneuropathy and autonomic neuropathy via skin biopsy but he also told me there was very little if anything that could be done to treat the problem other that offering a few types of pain meds. I had been taking Gabapentin ever since my 2003 PN diagnosis. My symptoms are very similar to what others have shared on this website. Pain, fatigue, very poor balance issues, weakness, itching, very low physical stamina, lightheadedness, digestion problems and occasionally a degree of breathing difficulties.
I have constantly searched for help and guidance on how to deal with this evidentially incurable problem and other than this website found very little of real use.
I am writing this to share some of my story but more importantly for potential readers/sufferers to pass along to a link to a website that has more helpful information than any place I have yet found. When printed this is 30 pages long to give you an idea the degree of detail that is covered. The site is: https://suzycohen.com/articles/small-fiber-neuropathy-its-different/
My best to you/us all.

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bettyg81pain | @bettyg81pain | Dec 9, 2024

Are you not taking Tramadol? I couldn’t survive without it!

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1 reply
jchet | @jchet | Dec 9, 2024
In reply to @bettyg81pain "Are you not taking Tramadol? I couldn’t survive without it!" + (show)
@bettyg81pain

Are you not taking Tramadol? I couldn’t survive without it!

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How much tramadol do you take and how often?

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1 reply
vaun | @vaun | May 6 5:59pm
In reply to @artscaping "Good evening @blaircrossan, welcome to Connect, a very active Neuropathy Support Group. If I read your..." + (show)
@artscaping

Good evening @blaircrossan, welcome to Connect, a very active Neuropathy Support Group. If I read your introduction correctly, you are saying that viruses from a previous medical condition caused your idiopathic neuropathy. When were you diagnosed with neuropathy? I am so sorry that you have not received an appropriate response from medical professionals. Are you taking any pain medication? Many of the Connect members have found that neuropathy symptoms first appear in the hands and feet.

Perhaps it would be best to start your discussions with other members after you have had a chance to gather information contained in the following sites.
https://www.foundationforpn.org/. The Foundation for Peripheral Neuropathy
https://neuropathycommons.org/. Neuropathy Commons

As a mentor, my experience comes from 11 years of SFN (small fiber neuropathy). Did anyone mention SFN to you? Did you have a skin biopsy to validate SFN?

I will look forward to your next post.
May your struggles and sorrows be eased
Chris

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I know that I have small fiber neuropathy because I had a skin biopsy after my complaint that my feet were numb.

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vaun | @vaun | May 6 6:04pm
In reply to @jchet "How much tramadol do you take and how often?" + (show)
@jchet

How much tramadol do you take and how often?

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I do not take tramadol. I have tried it, but it did nothing for me. I use acetaminophen 650mg, as needed, and Gabapentin 200mg at night

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marietter | @marietter | 3 days ago

The only thing I disliked about gabapentin was that I had difficulty with regular bowel movements. I had to rely on daily Citracel for that.
I discontinued it once I had my spinal cord stimulator implanted for my stenosis thinking that would solve both my back and leg pain, but now I'm going to discuss with my pain specialist about restarting it.

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