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 1:34am
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?

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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 9:07am
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 3:13pm

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 | 6 days ago

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

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1 reply
jchet | @jchet | 6 days ago
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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