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.

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

nitsirk | @nitsirk | Sep 27, 2022
In reply to @amyj2022 "I understand the feeling, you mention using medical cannabis, I live in a state that very..." + (show)
@amyj2022

I understand the feeling, you mention using medical cannabis, I live in a state that very much discourages this option. Do you get a prescription for yours? I feel it would help since my box of lotions, gels etc do very little. Lidocaine seems to help off and on, so does Topricin, but nothing helps enough.

Jump to this post

No, topical stuff doesnt help at all for me either. A tens machine is much better than that. Im in the UK, and cannabis only covers certain conditions just now, so I joined a big project aiming to gather evidence for the NHS, so hopefully it will be free soon. For now I am paying for it, and it’s working out to be about £150 to £200 a month on a private prescription. I am forced to use a wheelchair when out of the house, to demonstrate how severe my pain gets. If I were you, I would try a tens machine first. You can get a really good one for £40 plus electrodes. This will give you a guide as to whether acupuncture will work on you as the body responds similarly to both, and is ineffective on 30% of people. It can also wear off in another 20%, so I find it best to do it for shorter periods and then rest instead of using it every day.

REPLY
nitsirk | @nitsirk | Sep 27, 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

If you want to try tens, look for one that does the Han cycle like this one: https://bodyclock.co.uk/easy-tens-plus-machine/

REPLY
amyj2022 | @amyj2022 | Sep 27, 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

Thank you for replying, I have wondered about the Tens units, I think I may try that. I dont need a wheel chair for home but if shopping I definitely have to hold onto cart or use the electric chairs. I wish you much luck with the Cannabis, I would love to try the medical Cannabis but not yet in South Carolina. We have a new candidate for Governor who says he will make this happen, people believe him but he cannot do anything if elected officials ae against it, plus he is a total flake in other areas.

REPLY
1 reply
nitsirk | @nitsirk | Sep 28, 2022
In reply to @amyj2022 "Thank you for replying, I have wondered about the Tens units, I think I may try..." + (show)
@amyj2022

Thank you for replying, I have wondered about the Tens units, I think I may try that. I dont need a wheel chair for home but if shopping I definitely have to hold onto cart or use the electric chairs. I wish you much luck with the Cannabis, I would love to try the medical Cannabis but not yet in South Carolina. We have a new candidate for Governor who says he will make this happen, people believe him but he cannot do anything if elected officials ae against it, plus he is a total flake in other areas.

Jump to this post

If it works, you can even buy Tens sock electrodes if the feet stay the worst zone.

REPLY
exitframeleft | @exitframeleft | Sep 28, 2022
In reply to @djmvd1993 "Who is your neurologist? I live in this area and don’t know anyone who specializes in..." + (show)
@djmvd1993

Who is your neurologist? I live in this area and don’t know anyone who specializes in SFN.

Jump to this post

Dr. Kazim Sheikh

REPLY
johnmacc | @johnmacc | Sep 28, 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

Hello exitframeleft, I'm Johnmacc. Do you spread out your gaba intake and if so how?

REPLY
1 reply
exitframeleft | @exitframeleft | Sep 28, 2022
In reply to @johnmacc "Hello exitframeleft, I'm Johnmacc. Do you spread out your gaba intake and if so how?" + (show)
@johnmacc

Hello exitframeleft, I'm Johnmacc. Do you spread out your gaba intake and if so how?

Jump to this post

I am on (3) 300mg in AM. (3) 300mg at Noon and (3) 300mg at night for a total of 2700mg.

REPLY
1 reply
exitframeleft | @exitframeleft | Sep 28, 2022
In reply to @nitsirk "Hi, Sounds similar to mine, which is Wartenbergs Migratory Sensory Neuropathy, a catch all for whats..." + (show)
@nitsirk

Hi, Sounds similar to mine, which is Wartenbergs Migratory Sensory Neuropathy, a catch all for whats left after ruling everything else out! Mine is very likely autoimmune just going by medical history. Gabapentin didnt help me at all, but mucked up my speech! I am currently slowly switching from the general pain meds/antidepressants used for neuropathy to medical cannabis. Ive had it for 17 years, and its relapsing/remitting. Acupuncture has helped a lot too, especially when one nerve branch gets too out of control. I also get crawling, itching, numbness, hot/cold patches etc etc. Mine started in my feet, but can now be randomly anywhere. I just tend to think that 400 years ago I would either be being exorcised or burnt at the stake 🤣

Jump to this post

I will check with my Neuro and see. I am still at the "what might be causing it" stage. Still feel it is my long-time Autoimmune though none of the bloodwork points to it. Thanks for your comment. Neuropathy is so hard to describe to people because of all of these sensations happening at once. People tend to think them as a one at a time process. It is frustrating all around: the symptoms, the length of time to diagnose, the expense involved with some of the tests and then the mental part of the "wow, I have a lifelong condition that may get a whole worse but you can't tell why I have it" . Hope you are doing well. Hang in there!

REPLY
johnmacc | @johnmacc | Sep 28, 2022
In reply to @exitframeleft "I am on (3) 300mg in AM. (3) 300mg at Noon and (3) 300mg at night..." + (show)
@exitframeleft

I am on (3) 300mg in AM. (3) 300mg at Noon and (3) 300mg at night for a total of 2700mg.

Jump to this post

Does it wear off a bit before each new dose?

REPLY
1 reply
exitframeleft | @exitframeleft | Sep 28, 2022
In reply to @johnmacc "Does it wear off a bit before each new dose?" + (show)
@johnmacc

Does it wear off a bit before each new dose?

Jump to this post

So far, it hasn’t really helped much. Perhaps takes a bit of the edge off the symptoms. 900mg a day did seem to help for a month or so, but it stopped helping at all about 6 weeks so here I am at 2700mg a day. Definitely depends on my activity throughout the day. I walk a lot at work and the more I walk, the worse the symptoms are. Walked over 5 miles today and my feet are on fire as well as tingling and pain. I hope the 2700mg dose kicks in and helps soon. It’s very frustrating.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.