1. < Neuropathy

Non-Length Dependent Small Fiber Neuropathy

Posted by kathleen123 @kathleen123, Feb 22, 2021

there is much discussion of PN but seldom is much said about non-length dependent neuropathy. I guess it must be relatively rare. The condition affects all different parts of the body. I think it is usually idiopathic as is mine is. I was diagnosed with it more than 10 years ago. I’d like to hear from others with this type of small fiber neuropathy.

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fisbo | @fisbo | Sep 29, 2022
In reply to @exitframeleft "Non-Length Dependent SFN- who else has this diagnosis? Recently DX with this definitively from skin biopsy...." + (show)
@exitframeleft

Non-Length Dependent SFN- who else has this diagnosis?

Recently DX with this definitively from skin biopsy. Of course as everyone who has gone through the lengthy diagnosis process knows , they don’t know a whole lot about this specific type of neuropathy. At the end, it is still just “treat the symptoms and hope it doesn’t progress. 2 possible causes for me: B6 toxicity from multivitamin with 3x the amount needed that I haven’t taken for 2 months and the other one that it could also be: autoimmune, specifically 35 years of Crohn’s disease. Neuro still doing testing to rule out other underlying causes. Current symptoms for me are in the feet: tingling, numbness, burning and pain. Odd and unsettling combo that I feel every minute I’m awake. On 2700mg gabapentin and it helps a bit, but you basically just have to push throuugh. I’ve had symptoms for 2 years and I’m fortunate I live near the Texas Medical Center and have lucked into having a neuro who specializes in SFN.

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I have same as you in feet and my lower legs. Incredibly painful and uncomfortable. I just wish it would go. I get very depressed as I feel this is it now. I have had it for 2 and half years. I was in Gapapentin but off it from today and going on Pregabalin. Feeling a bit shaky and nauseas withdrawal from coming off forner. Tapered off them but in 600mg stages which is probably why. Both tablets are very powerful. Gapapentin did not work for me basically so now it's wait and see with Pregabalin.

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1 reply
fisbo | @fisbo | Sep 29, 2022
In reply to @exitframeleft "Happy to hear lidocaine helps you with the burning. I have the 4% Aspercreme and it..." + (show)
@exitframeleft

Happy to hear lidocaine helps you with the burning. I have the 4% Aspercreme and it doesn’t help. I’ve tried a ton of topicals and none of them help. I’d love some relief from the burning and pain.

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So would I it's excrutiating isn't it ......

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1 reply
exitframeleft | @exitframeleft | Sep 29, 2022
In reply to @vault "I was finally definitively diagnosed with Small Fiber Polyneuropathy after the puzzle piece of Gastroparesis was..." + (show)
@vault

I was finally definitively diagnosed with Small Fiber Polyneuropathy after the puzzle piece of Gastroparesis was added to my long list of disparate symptoms and my neurologist ordered an IENF Skin Biopsy.
My symptoms started three years before that after a day at Disneyland walking and standing for hours.
I could hardly walk to the car, and suffered level 7 BURNING, tingling, numbness, parenthesis’s, etc., that kept me from sleeping/dreaming for 3 years before I saw a podiatrist who diagnosed bilateral plantar fasciitis with bilateral Achilles Tendonitis. He tried cortisone injections which did nothing. Neither foot braces, resting feet, Lidocaine patches nor ice helped.
My PCP referred me to a neurologist who prescribed 300 mg Gabapentin which did nothing.
He titred up my Gabapentin to 300 mg Gab 3 x per day (900 mg total daily) PLUS Cymbalta (Duloxitine) 60 mg, and the burning went away!! He said the Gabapentin blocks the pain signals from my feet/lower legs, and the Duloxitine blocks the pain Receptors in my brain. Coincidentally, the pain receptors in the brain are in the same region that controls Depression. No wonder pain and depression go together, and that is why the Cymbalta (Duloxitine) plus Gabapentin works together to control symptoms for me. My pain has been controlled for over a year! I resisted the depression piece at first because I didn’t understand the pain/brain connection. When you need to control things, accepting "DEPRESSION" is hard.
I’ve recently been diagnosed with Central sleep apnea, and will have an in-lab sleep study.
Hopefully, this isn’t a progression of my autonomic symptoms.
Another weird symptom - when I gasp for air, my lower legs tingle! This has improved since starting AutoSet CPAP. Sleep lab results should be interesting.

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Glad you've found a med combo that helps. I also have sleep apnea, thought it is mild. due for another sleep test in December to see if that is worse.

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exitframeleft | @exitframeleft | Sep 29, 2022
In reply to @fisbo "So would I it's excrutiating isn't it ......" + (show)
@fisbo

So would I it's excrutiating isn't it ......

Jump to this post

Yes. Hard to stay positive with SFN when every minute you’re awake you feel the symptoms. I’m glad I’m able to work, though busy days mean lots of walking and that always feels awful. I just want to get a medication or combo of meds that provides a decent level of relief. I’m still early on with the meds so I’m probably being impatient. I will let 2700mg of gabapentin play out for a while longer and go from there.

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fisbo | @fisbo | Sep 29, 2022
In reply to @exitframeleft "Non-Length Dependent SFN- who else has this diagnosis? Recently DX with this definitively from skin biopsy...." + (show)
@exitframeleft

Non-Length Dependent SFN- who else has this diagnosis?

Recently DX with this definitively from skin biopsy. Of course as everyone who has gone through the lengthy diagnosis process knows , they don’t know a whole lot about this specific type of neuropathy. At the end, it is still just “treat the symptoms and hope it doesn’t progress. 2 possible causes for me: B6 toxicity from multivitamin with 3x the amount needed that I haven’t taken for 2 months and the other one that it could also be: autoimmune, specifically 35 years of Crohn’s disease. Neuro still doing testing to rule out other underlying causes. Current symptoms for me are in the feet: tingling, numbness, burning and pain. Odd and unsettling combo that I feel every minute I’m awake. On 2700mg gabapentin and it helps a bit, but you basically just have to push throuugh. I’ve had symptoms for 2 years and I’m fortunate I live near the Texas Medical Center and have lucked into having a neuro who specializes in SFN.

Jump to this post

I was on 1800mg of Gapapentin but it didn't work. Getting side effects coming off it gradually had last one today. I was highly anxious and shaking last two mornings. I asked two pharmacists who said it would be withdrawal symptoms. Anyway I am starting Pregabalin 100mg per day to start. Two weeks at that then increase dosage by GP. Not pleased at having to wait two weeks but that's how my GP operates.

REPLY
1 reply
exitframeleft | @exitframeleft | Sep 29, 2022
In reply to @exitframeleft "Non-Length Dependent SFN- who else has this diagnosis? Recently DX with this definitively from skin biopsy...." + (show)
@exitframeleft

Non-Length Dependent SFN- who else has this diagnosis?

Recently DX with this definitively from skin biopsy. Of course as everyone who has gone through the lengthy diagnosis process knows , they don’t know a whole lot about this specific type of neuropathy. At the end, it is still just “treat the symptoms and hope it doesn’t progress. 2 possible causes for me: B6 toxicity from multivitamin with 3x the amount needed that I haven’t taken for 2 months and the other one that it could also be: autoimmune, specifically 35 years of Crohn’s disease. Neuro still doing testing to rule out other underlying causes. Current symptoms for me are in the feet: tingling, numbness, burning and pain. Odd and unsettling combo that I feel every minute I’m awake. On 2700mg gabapentin and it helps a bit, but you basically just have to push throuugh. I’ve had symptoms for 2 years and I’m fortunate I live near the Texas Medical Center and have lucked into having a neuro who specializes in SFN.

Jump to this post

Update: Just got a low result on my acid alpha galactosidase enzyme test, indicating a possible gene defect. It might be Fabry disease, which I should not have Googled. Oh well. Needless to say I want to move up my December Neurologist appointment now.

REPLY
johnmacc | @johnmacc | Sep 29, 2022
In reply to @exitframeleft "Happy to hear lidocaine helps you with the burning. I have the 4% Aspercreme and it..." + (show)
@exitframeleft

Happy to hear lidocaine helps you with the burning. I have the 4% Aspercreme and it doesn’t help. I’ve tried a ton of topicals and none of them help. I’d love some relief from the burning and pain.

Jump to this post

Have you tried the Australian topical called Outback? I bought some but scented things trigger migraines for me so I didn't get to actually try it. I hear some great things about it.

REPLY
1 reply
exitframeleft | @exitframeleft | Sep 29, 2022
In reply to @johnmacc "Have you tried the Australian topical called Outback? I bought some but scented things trigger migraines..." + (show)
@johnmacc

Have you tried the Australian topical called Outback? I bought some but scented things trigger migraines for me so I didn't get to actually try it. I hear some great things about it.

Jump to this post

I haven't tried that one. Thanks for the tip!

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exitframeleft | @exitframeleft | Sep 29, 2022
In reply to @fisbo "I was on 1800mg of Gapapentin but it didn't work. Getting side effects coming off it..." + (show)
@fisbo

I was on 1800mg of Gapapentin but it didn't work. Getting side effects coming off it gradually had last one today. I was highly anxious and shaking last two mornings. I asked two pharmacists who said it would be withdrawal symptoms. Anyway I am starting Pregabalin 100mg per day to start. Two weeks at that then increase dosage by GP. Not pleased at having to wait two weeks but that's how my GP operates.

Jump to this post

I'm sorry to hear you are having side effects. Seems pretty common. Gabapentin is a tough one to come off of, from what I've read. My doc says duloxetine is the next med to try if I max out on gabapentin with no relief.

REPLY
exitframeleft | @exitframeleft | Sep 29, 2022
In reply to @fisbo "I have same as you in feet and my lower legs. Incredibly painful and uncomfortable. I..." + (show)
@fisbo

I have same as you in feet and my lower legs. Incredibly painful and uncomfortable. I just wish it would go. I get very depressed as I feel this is it now. I have had it for 2 and half years. I was in Gapapentin but off it from today and going on Pregabalin. Feeling a bit shaky and nauseas withdrawal from coming off forner. Tapered off them but in 600mg stages which is probably why. Both tablets are very powerful. Gapapentin did not work for me basically so now it's wait and see with Pregabalin.

Jump to this post

Good luck with the Pregabalin

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