Small fiber neuropathy?

Thanks for sharing your story again; it’s really helpful to hear others’ experiences. Bookmarking is a great idea—I’ve started doing that too for threads like this. Small fiber neuropathy can be so challenging, especially with mobility issues. Have you found any strategies or treatments that have helped manage your symptoms?

My mobility is caused by weakness primarily. In 2016, I was stricken over a 10 day period by severe increasing leg/arm weakness accompanied by a UTI & kidney infection. On the 10th day and finally in a hospital, my knees finally buckled and I remained in a wheelchair for 6 months with extensive physical therapy that made great gains in strengthening my legs and getting balance to where I can waddle around unassisted for small distances now; but I cannot climb, do small steps or even a curb without help or a cane/walker. I cannot run, skip, or hop, but am grateful for what I can do and for being out of a wheelchair & able to drive. My hands are limited but I can now handle forks & knifes & TP!

In the hospital they tested for Guillain-Barre but it came back inconclusive because they did not obtain enough spinal fluid to test. They didn't retest because the hospital facility itself was not so specialized for neurological issues. I later went to Duke who says it's a possible I had post-infection disorder similar to GBS but there would be no treatment available for it regardless. So we're not exactly sure, but I have been tested for a lot of things that have been eliminated. I am officially labeled as Idiopathic Axonal Sensorimotor Peripheral Neuropathy, but I have never been tested for SFN. My symptoms seem to overlap both though: extreme sensitivity of hands & feet to cold (and heat); numbness & tingling from elbows to fingers, knees to toes; inability to sweat properly in heat; and general balance & weakness issues. My PN comes with a bit of pain that is managed well with Gabapentin.

So that was the long answer to the causes of my mobility issue. I spent a lot of time trying to get an exact cause so I could get an exact cure. My number one priority now is to keep strong with activity and physical therapy so I do not get worse and can live the best life possible!

Have you had a small fiber biopsy? NIH has a good continuing education paper on SFN that came out last year. Look it up under the PubMed site. Lots of current info.

No, None of my doctors over the years have felt that it would add value to my current diagnosis since they know I have axonal sensory PN. One said I couldn't also have SFN, but that has been disputed by people on here that know they have both. Regardless, the doctors have all said there is nothing they can do but help manage the symptoms, so I learn to live with it from the wealth of information and real life experience with PN on this forum!

There is a lot of new info about this condition and one of its causes, Sjogren's. And you can have SFN for a time and then it effects the long nerves. You may be able to still lessen your symptoms. Worth learning about. (BTW: I have this, too.)

Hi,

I am 35 and was diagnosed with idiopathic Small Fiber Neuropathy mid 2024 and like many of us here, have been on overdrive in trying to figure out how to alleviate the symptoms. The only testing I have not yet done is genetic testing but will probably do that some time later this year. My doctors (and there have been many) have not yet prescribed the common medication I've seen here such as Gabapentin etc, presumably because the symptoms I have are manageable at the moment. All possible autoimmune diseases have been tested for and ruled out. Blood tests are normal (some repeated over a period of four months). The doctors not only supported my request to continue doing sports (running, boarding, rock climbing, badminton, etc), they advocated it greatly. For context, I live in Switzerland.

My symptoms:
1) Intense tingling in hands and feet
2) "Loss of blood" sensation (quite severe) in arms and legs particularly after waking up from sleep
3) Soles of feet sometimes have burning sensation
4) Symptoms intensifying sometimes before monthly menstruation

I'd like to share some of my management tips/ techniques that I have consolidated over time from some of you here and other forums, in hopes that you might benefit too 🙂 I'm not claiming that any of these are the silver bullets we seek but I'm trying and testing what works for me.

Muscle and Balance
1) I recently had a bad fall and sprained the ligaments in both my knee and ankle. Very painful but the silver lining was I met a fantastic physiotherapist who upon hearing my SFN diagnosis, immediately got me started on doing balance exercises and asked me to look into hand strengthening devices. It's never too late or early to start. Even if you don't feel it now, it's good to combat any early-onset muscle weaknesses caused by SFN.

Legs and feet: I recommend getting a soft balance pad and doing consistent floor balancing exercises (one side at a time). Plenty on YouTube. Why the soft pad? Because it's more challenging than flat ground but not completely unstable/ dangerous 🙂

Arms and hands: Check out finger strengtheners and related exercises to strengthen and improve dexterity (also one of the things to deteriorate with SFN).

Light (or medium/heavy depending on your lifestyle!) weights are also very helpful.

Massages and Physical Relief:
1) Hand massager - I find this helpful because my fingers tend to feel overly tensed and borderline painful. Effects lasts 24 hours almost.
2) Epsom bath salts - I soak once in a while in Epsom salts and this was incredibly helpful. The only thing is I find it quite tedious to fill up a bath too frequently so limit it to once every week or two. What helps very well for feet in a pinch is soaking just your feet in Epsom salts and warm water - this I do often. Effects lasts 24 hours and more.
3) TENS machine - To be honest, I think this is more a placebo effect than anything. It's pleasant during the 20 minutes I use it but hardly lasting afterwards.
4) Percussion massager - I love this. I apply on calves, thighs, arms. Effects lasts 24 hours.
5) Traditional massage - I just grab a tiny bit of massage oil, warm them between my palms and rub affected areas in circular motions. Effects last for duration of sleep 🙂

Sports:
I have read examples from people who benefit from doing medium-intensity sports at night so I followed and it seems to help. Either due to heightened blood circulation or great distraction from the symptoms. I have been running 2.5 - 3 kms a few times a week at night in the outdoors following my injuries. Will restart other sports upon recovery 🙂 It might be a bit more torturous than life before SFN, but it does help tremendously with balance training and mental health!

Supplements and Nourishment:
I am trying the usual supplements that you can get over the counter e.g. Ginger, Capsicum, Cayenne, Acetyl L Carnitine, ALA, etc, after personally reading up on potential side effects. I have no negative impact thus far but also am unable to attribute the alleviation of my symptoms to the consumption of these supplements and therefore cautious in recommending anything in particular.

I have read here that many people have felt better after cutting out sugar, so I will aim to reduce sugar consumption. I don't drink alcohol frequently.

In sum:
I went through dark periods where I felt helpless and alone in this despite having a supportive partner. I took some time to "grieve" my previous body. Personally, as I cannot get to the source of why this has happened, I am now choosing to find ways to distract my mind from experiencing the sensations (when they're bearable). That doesn't mean I'm ignoring it, but I redirect the attention elsewhere. I do this through different kind of exercises (it could even be doing a deep cleaning of the house with favourite music or tv show on, whichever I am physically able to do at the time) or reading or massaging myself. I think maintaining mental health is a huge factor in living with SFN, alongside persevering physical function.

I hope there will be a foolproof medication one day that can address SFN once and for all. But until then, I'm glad forums like this exist so that we are able to share with each other and help each other through this.

Courage.

Hi,

I am 35 and was diagnosed with idiopathic Small Fiber Neuropathy mid 2024 and like many of us here, have been on overdrive in trying to figure out how to alleviate the symptoms. The only testing I have not yet done is genetic testing but will probably do that some time later this year. My doctors (and there have been many) have not yet prescribed the common medication I've seen here such as Gabapentin etc, presumably because the symptoms I have are manageable at the moment. All possible autoimmune diseases have been tested for and ruled out. Blood tests are normal (some repeated over a period of four months). The doctors not only supported my request to continue doing sports (running, boarding, rock climbing, badminton, etc), they advocated it greatly. For context, I live in Switzerland.

My symptoms:
1) Intense tingling in hands and feet
2) "Loss of blood" sensation (quite severe) in arms and legs particularly after waking up from sleep
3) Soles of feet sometimes have burning sensation
4) Symptoms intensifying sometimes before monthly menstruation

I'd like to share some of my management tips/ techniques that I have consolidated over time from some of you here and other forums, in hopes that you might benefit too 🙂 I'm not claiming that any of these are the silver bullets we seek but I'm trying and testing what works for me.

Muscle and Balance
1) I recently had a bad fall and sprained the ligaments in both my knee and ankle. Very painful but the silver lining was I met a fantastic physiotherapist who upon hearing my SFN diagnosis, immediately got me started on doing balance exercises and asked me to look into hand strengthening devices. It's never too late or early to start. Even if you don't feel it now, it's good to combat any early-onset muscle weaknesses caused by SFN.

Legs and feet: I recommend getting a soft balance pad and doing consistent floor balancing exercises (one side at a time). Plenty on YouTube. Why the soft pad? Because it's more challenging than flat ground but not completely unstable/ dangerous 🙂

Arms and hands: Check out finger strengtheners and related exercises to strengthen and improve dexterity (also one of the things to deteriorate with SFN).

Light (or medium/heavy depending on your lifestyle!) weights are also very helpful.

Massages and Physical Relief:
1) Hand massager - I find this helpful because my fingers tend to feel overly tensed and borderline painful. Effects lasts 24 hours almost.
2) Epsom bath salts - I soak once in a while in Epsom salts and this was incredibly helpful. The only thing is I find it quite tedious to fill up a bath too frequently so limit it to once every week or two. What helps very well for feet in a pinch is soaking just your feet in Epsom salts and warm water - this I do often. Effects lasts 24 hours and more.
3) TENS machine - To be honest, I think this is more a placebo effect than anything. It's pleasant during the 20 minutes I use it but hardly lasting afterwards.
4) Percussion massager - I love this. I apply on calves, thighs, arms. Effects lasts 24 hours.
5) Traditional massage - I just grab a tiny bit of massage oil, warm them between my palms and rub affected areas in circular motions. Effects last for duration of sleep 🙂

Sports:
I have read examples from people who benefit from doing medium-intensity sports at night so I followed and it seems to help. Either due to heightened blood circulation or great distraction from the symptoms. I have been running 2.5 - 3 kms a few times a week at night in the outdoors following my injuries. Will restart other sports upon recovery 🙂 It might be a bit more torturous than life before SFN, but it does help tremendously with balance training and mental health!

Supplements and Nourishment:
I am trying the usual supplements that you can get over the counter e.g. Ginger, Capsicum, Cayenne, Acetyl L Carnitine, ALA, etc, after personally reading up on potential side effects. I have no negative impact thus far but also am unable to attribute the alleviation of my symptoms to the consumption of these supplements and therefore cautious in recommending anything in particular.

I have read here that many people have felt better after cutting out sugar, so I will aim to reduce sugar consumption. I don't drink alcohol frequently.

In sum:
I went through dark periods where I felt helpless and alone in this despite having a supportive partner. I took some time to "grieve" my previous body. Personally, as I cannot get to the source of why this has happened, I am now choosing to find ways to distract my mind from experiencing the sensations (when they're bearable). That doesn't mean I'm ignoring it, but I redirect the attention elsewhere. I do this through different kind of exercises (it could even be doing a deep cleaning of the house with favourite music or tv show on, whichever I am physically able to do at the time) or reading or massaging myself. I think maintaining mental health is a huge factor in living with SFN, alongside persevering physical function.

I hope there will be a foolproof medication one day that can address SFN once and for all. But until then, I'm glad forums like this exist so that we are able to share with each other and help each other through this.

Courage.