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djroberts
@djroberts

Posts: 3
Joined: Oct 09, 2018

My experience with Small Fiber Neuropathy

Posted by @djroberts, Tue, Oct 9 6:53pm

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.

Liked by kiowajack

REPLY

Hello @djroberts, welcome to Connect. I also have small fiber peripheral neuropathy and stopped drinking alcohol after I was diagnosed. I can tell you that alcohol is a big no no when you have neuropathy. Lots of evidence…

Foundation for Peripheral Neuropathy
https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/alcohol/

Alcoholic Polyneuropathy: Nerve Damage Affecting Sensitivity, Coordination, & Function
https://www.alcohol.org/comorbid/polyneuropathy/

I'm also considered a pre-diabetic but have been that way for 20+ years but my A1C has always been right around 5.8 to 6.1. I have found something that helps me but it may or may not work for you. You can read my story here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I just have the numbness and tingling but no pain in my feet to just above my ankles. I had an EMG and a few other tests before I met with my neurologist and was diagnosed.

@djroberts are you able to share a little more specifics about your symptoms? What specific tests have you had?

John

Liked by djroberts

@johnbishop

Hello @djroberts, welcome to Connect. I also have small fiber peripheral neuropathy and stopped drinking alcohol after I was diagnosed. I can tell you that alcohol is a big no no when you have neuropathy. Lots of evidence…

Foundation for Peripheral Neuropathy
https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/alcohol/

Alcoholic Polyneuropathy: Nerve Damage Affecting Sensitivity, Coordination, & Function
https://www.alcohol.org/comorbid/polyneuropathy/

I'm also considered a pre-diabetic but have been that way for 20+ years but my A1C has always been right around 5.8 to 6.1. I have found something that helps me but it may or may not work for you. You can read my story here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I just have the numbness and tingling but no pain in my feet to just above my ankles. I had an EMG and a few other tests before I met with my neurologist and was diagnosed.

@djroberts are you able to share a little more specifics about your symptoms? What specific tests have you had?

John

Jump to this post

Thank you so much, @johnbishop

I'll read up on all the links this week.

My symptoms (I like lists):
I get pins & needles mainly in my feet and occasionally my hands. These episodes typically last days then go away. I usually wake up with them. It appears that walking and exercise help. Sitting and laying seem to contribute to the issues but I'm not sure.

I occasionally get sensitive patches on my forearms. I have developed two numb spots on my left foot. Right at the back of the heel and on the top of the foot. I sometimes get sharp stabbing pains in my toes and very occasionally my fingers. Sometimes I'll get a stabbing pain in my toe and somewhere else higher up on my leg at the same time. Completely synchronous.

My nerves can become hypersensitive. For instance, sitting I can start to get pins and needles within a minute but it goes away fast if I stand. This seems to be worse if I've been drinking lately. I stopped completely a week ago and before that I had cut down to just a couple of drinks a week. Beer seemed to affect me those most. Occasionally if I hold my phone too much the next morning I'll wake up with pins and needles in the spots where I held my phone. Also, occasionally, I wake up with ulner nerve inflammation symptoms. Usually on my left. I bought a thicker pillow which seems to help. It again seems like drinking alcohol makes me more susceptible to it.

Lastly, I feel like I may have had some of the autonomic symptoms with sweating and light headedness but it could just as easily been anxiety given all the news I've been absorbing.

Tests:
I've had nerve conduction tests, poking, reflex and various blood tests. I pass all the major nerve tests as many of us do with SFN. I need to follow up to understand some of the more recent blood tests but I think we've ruled out some rare conditions and Cecelia. My fasting blood glucose has been hovering at 100 for many years. My cholesterol has been around 280 with triglycerides at or higher than that. Quiting alcohol and eating better has dramatically lowered them. I believe my total cholesterol is around 200 now and my triglycerides are 168.

Curious about:
I'm vary curious about the affects CBD (topical and other), marijuana in general, and Sildenafil (generic Viagra) might have. I've read some studies on Sildenafil with rats. My neurologist seems open to a skin biopsy which I just requested. I'm hoping to get an official diagnosis followed by genetic testing. I read that a mutation in SCN9A is something to look for and could influence the type of treatment. I have all my DNA sequenced but I don't know how to read the raw data correctly.

@johnbishop

Hello @djroberts, welcome to Connect. I also have small fiber peripheral neuropathy and stopped drinking alcohol after I was diagnosed. I can tell you that alcohol is a big no no when you have neuropathy. Lots of evidence…

Foundation for Peripheral Neuropathy
https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/alcohol/

Alcoholic Polyneuropathy: Nerve Damage Affecting Sensitivity, Coordination, & Function
https://www.alcohol.org/comorbid/polyneuropathy/

I'm also considered a pre-diabetic but have been that way for 20+ years but my A1C has always been right around 5.8 to 6.1. I have found something that helps me but it may or may not work for you. You can read my story here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I just have the numbness and tingling but no pain in my feet to just above my ankles. I had an EMG and a few other tests before I met with my neurologist and was diagnosed.

@djroberts are you able to share a little more specifics about your symptoms? What specific tests have you had?

John

Jump to this post

I'm curious if you know. If my symptoms are caused by alcohol. Is it probable that completely quiting may stop the progression? As in, it won't get worse? I'd like that to be the case of course. It's scary to think it'll keep getting worse. I'm only 44.

@djroberts

I'm curious if you know. If my symptoms are caused by alcohol. Is it probable that completely quiting may stop the progression? As in, it won't get worse? I'd like that to be the case of course. It's scary to think it'll keep getting worse. I'm only 44.

Jump to this post

Hi @djroberts, we have another discussion on Connect that may be more helpful in meeting others as it has more members following that will see your posts. I would recommend reading through it to see if something stands out to you.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

There is also an active discussion on CBD oil that might answer some of your questions here:L

Groups > Bones, Joints & Muscles > CBD OIl
https://connect.mayoclinic.org/discussion/cbd-oil-2/

I wish I could answer your question on symptoms from alcohol but I'm not sure anyone knows since each of us are a little different.
I would just focus on doing what you find doesn't make it worse.

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