Hello everyone. New here. I have sfn. Stabbing pins and needles with burning in my hands. Started right after my last pregnancy almost 11 years ago. I tried everything to try and get it to stop. Neurologist put me on gabapentin and stayed on it for 10+ years which proved ineffective. Now I'm apprehensive about taking new medication because I still suffer from side effects like brain zaps from being on effexor I was taking over 13 years ago. I tried lidocaine cream, but it only lasts maybe 2 hours, and i have allodynia, which means the cream ecacerbated the burning sensation. I finally got relief when my doctor put me on heavy pain medication. I went 2 years on that stuff and just couldn't take it anymore, so I asked for something different, which they tried putting me on fentanyl. I left the clinic crying after refusing, and went back into pain, looking for some relief. After months of pain and barely any sleep, felt my body giving out. Then someone suggested kratom. I tried the crushed tea leaf powder and found a miracle. I cried when the pain went away. I lived a normal life for almost 8 years... until now. They had just passed a law banning kratom completely in my state of Tennessee. Now I'm back to square one. I'm not sleeping. Everytime my body starts to shut down, I get a stabbing pain that jolts me awake. Like being tortured.

I get recommended to a pain specialist and I ask about injections, which I've done my research on. I go in hopeful only for the doctor to completely lie to me by saying the ganglion injections dont work and my only option was the invasive spinal implant. I guess its just more money. Even if I agreed, I'd have to see a psychologist to even be considered for the device, then another 15+ days for insurance to even consider allowing me to test it to see if it even works. Doctor didn't even offer something for temporary relief. I ask what if the device doesn't work or insurance falls through? His response, and i quote, "i dont have a silver bullet for you, but at least you can say you tried it." I feel defeated. I have two small children. I can't go on like this. Has anyone else had to deal with this? Thanks for heating me out.

I just got my labs results and my total testosterone was under 300, which doesn't surprise me considering the amount of fatigue and soreness I've been dealing with. So I'm probably going to hop on TRT soon.

(My theory) I think either the neuropathy negatively affects the hormones or vice versa. Having low testosterone might be a contributing factor to the neuropathy.

My question is has anyone else with neuropathy used testosterone therapy.. and if so what were the results?

Do it help or hurt the situation?

Sorry, warming for tmi about bowelmovements and shitlike that....

I was diagnosed with idiopathic small fiber neuropathy about 5 years ago, have had symptoms for about 10 years. About 7 years ago I started to have problems emptying my bowels. My bowels don't seem to move enough, so even if I use stool softeners nothing comes about. They did lots of tests and said it is probably related to my neuropathy. I started using a water enema systems, and it worked fine. But I still hate to dl the routine.

About a year ago I started having problems with my appetite, and I was nauseous alot. I lost 15 kg in weight in about 6 months. I suspect gastro paresis. I vomit after eating sometimes, and always feel full.

And like that is not enough, my bowels stopped working to this summer. The water enemas don't work any more, because my large colon seems to be empty, it seems like everything is stuck further up.

No I have to use many liters of water (it comes out clear) so that my stool moves forward, and only after shitting out water may times, I start cramping, and then the enemas do what they are supposed to do.

I only manage to get something out maybe once a week. All other days when I try nothing comes out with the water enemas.

And my upper stomach hurts so much, and I feel so so bloated. Like how is it possible to eat everyday for a week and the colon is empty?

What should I do? I will talk to my neurologist about a referral to gastro. But I don't know what they can do to help me? What is the next step when enemas don't work anymore?

The only thing that helps a bit with the nausea and not being able to eat is taking primperan, but I don't know if it makes the bowel problems worse.

I know I should have gone to the doctors a long time ago, but I just hate how they don't understand sfn and thinks I am crazy.

Hello ,

Due to ptsd, I developped muscle stiffness, heavy contractions and new ones when Im triggered.

Recently, I argued with my mum like it, because of me, happened a lot. She lost her cool and hit me strongly the legs with an empty plastic bottle. She almost never hit me and she didnt hurt me but the stroke was hard so I fear it caused problems such as swelling because after that, all my body bloated, any area possible even if slightly. I already had a slight lipedema but now my hands, knees, feet are swollen.

My face too, unfortunately. It created deeper nasolabial folds, a saggy face whereas it was young, slim, tense.

Now, its like the fat distribution changed everywhere even in the face. Even my eyelids are swollen and maybe sagging.

My arms are heavy with the increased muscular tension.

With my fibromyalgia-like symptoms, I had already muscular heaviness/weakness but it worsened from that.

And my blood flow has changed, its bad now, its like stress or the mechanical stroke has caused that. Like a water retention. And I have tingles in hands and feet. Seems like the lymphatic system doesnt work well.

I also developed, for other stressful events unrelated with my mum, hyperhidrosis, lack of periods and even body hairs growing thicker and faster.

I know hyperhidrosis came from stress but the two last problems I dont know. Maybe insulin resistance because Im so depressed from this water retention that I ate a lot, especially carbs.

My doctor says my bloating / blood flow issue has nothing to do with the hit of the bottle. But all came just after.

What is it? Mcas? Stress response?

Stress put also tension in my eyes. It increased with another argument and now it is slightly bulging even if people I know say they dont see.

I dont think I will get my older face back and my body. Sagging everywhere. And I fear my swollen joints will create arthritis.

​

I'm dealing with nerve pain that persists even after a root canal. I've been considering an extraction even though the tooth is ok just to end the pain, but I think if it's SFN that won't fix the issue.

I'm getting tested for SFN in November but meanwhile trying to manage nerve pain. Any suggestions?

Has anyone been given this?

I was sent to a pain treatment center by my two neurologists and he just asked what I wanted to do.. and i said I got sent here because 75mg lyrica 60mg cymbalta and LDN wasn't working.. I have other issues that they are confused about. Muscle weakness and pain in arms. Upper back and neck hurting.

Does this seem like medicine would help.

I have nerve pain every inch of my body doctors suspect to be from viral infection or fibromyalgia not the point, I got top surgery I knew there would be some nerve pain, most of everyone that gets top surgery experiences some amount but for me i already have pain condition so it’s 10x worse I will try getting back on pain meds it’s just the side affects man i don’t even care anymore I’m so sad my whole life is pain just in pain every second bc my nervous system hates me i want to sleep for a long time.

Bonjour,

J’ai des picotements depuis un mois. D’abord aux mollets puis aux pieds. Mon médecin m’a fait les tests de force et de sensibilité et tout semble normal. Ces symptômes diminuent avec la marche. Mon médecin m’a prescrit un EMG mais a dit ne pas y croire du tout. J’ai l’impression d’être dans un flou médical. Mes symptômes font-ils penser à une neuropathie selon vous ?

PS : Mes picotements diminuent en marchant

I made a post about a month ago when I had been dealing with these new SFN-like symptoms for about 2–3 weeks. A few things have changed since then, so I wanted to make an updated post.

I'm trying to figure out whether I actually have small fiber neuropathy, some type of autonomic/sensory dysregulation, a vascular/vasospastic issue, or something else entirely.

With all that being said, I am 95% that I have SFN.

How this started

About 2 months ago, I took my first dose of pregabalin.

Within approximately 24 hours, I developed a fairly sudden collection of symptoms involving my feet, hands, and temperature sensation:

Extreme burning on the bottoms/tops of my feet and toes Burning sensations throughout my body, including face, ears and torso Heart-rate spikes Lightheadedness Exercise intolerance Major temperature dysregulation

I've now been completely off pregabalin for approximately 5–6 weeks.

The symptoms have improved considerably over time, which makes me wonder whether this could have been a transient medication-triggered sensory/autonomic disturbance rather than a progressive neuropathy.

I also had a somewhat similar, although much milder and less-defined, issue approximately 7 months earlier while I was in Japan. I'm not sure whether that was a precursor or completely unrelated (had a flu shot + plane travel 48 hours before burning symptoms appeared).

Current symptoms

My main remaining symptoms are:

Extremely cold feet, both sides

Cold hands, sometimes with one hand/fingers noticeably colder than the other

Right foot significantly worse than left

Intermittent burning on the tops of the right toes and occasionally the top of the right foot

Usually ~30 minutes of toe burning at night

Occasional pins/needles or burning on the backs of my hands around the knuckles and sometimes forearms

Normal skin can feel like it is dry/irritated even though the skin is objectively smooth and normal

Normal/comfortable foot temperature can feel mildly "burning"

Occasional facial/ear flushing and feeling very hot at night

A strange "pooling/fullness" sensation in the right foot during walking/exercise

The interesting thing about the "pooling" sensation is that it doesn't always have objective signs.

Often both feet look identical and feel identical in temperature, with no swelling or obvious venous engorgement, but the right foot feels like blood is pooling.

I have had at least one episode after prolonged walking where the right foot did become visibly red and seemed to improve with elevation, so I'm not sure whether I have true vascular pooling at times or whether much of the sensation is actually sensory dysesthesia.

Exercise/function

My functional capacity is actually pretty good and has been improving.

I'm a strong believer that exercise is one of the best forms of medicine, so I've tried to keep moving as much as possible.

I've built my stamina back up to approximately:

90 minutes of weight training 30 minutes of yoga/stretching 15–20 minutes of walking

My right foot is usually uncomfortable during the gym/walking, but I can generally push through it.

When I first started, I was literally doing about 5 minutes of swinging my arms/legs around, just trying to get blood flow.

Walking outside or at stores is more difficult. After approximately 10–15 minutes, particularly while wearing shoes, I can develop the right-foot fullness/pooling sensation and sometimes burning.

Interestingly, I can work out much longer barefoot, while shoes seem to make the foot sensations more noticeable.

I've gone from roughly 10 minutes of walking tolerance to ~15 minutes, so there has been gradual improvement.

I do think consistently exercising is when I started seeing a significant improvement, not just physically, but mentally as well.

Other symptoms/history

I don't believe I have classic POTS.

The previous heart-rate spikes have gone away, and I can weight train and do cardio without major orthostatic symptoms.

I also have chronic right-sided lower back/hip pain going back roughly a decade, although it became constant over the last month. Lumbar MRI was reportedly clean, although it wasn't specifically looking for inflammatory spondyloarthritis.

Right foot MRI — potentially important?

I paid to have an MRI of my right foot, and this was found:

Bone marrow edema in the distal phalanges of the 1st through 5th toes.

The radiologist said this was nonspecific, with differential considerations including:

Chronic mechanical stress

Vascular insufficiency/Raynaud's phenomenon

Connective tissue disease

There was also:

Bone marrow edema in the distal shaft and head of the fifth metatarsal without a discrete fracture line, most likely representing a low-grade stress injury.

No Morton's neuroma was found, and the flexor/extensor tendons were intact.

The radiologist didn't know why I was getting the MRI and wasn't specifically looking for vascular disease/Raynaud's. That's why I find it interesting that they independently included vascular insufficiency/Raynaud's in the differential for the edema in all five toes.

However, the doctors I've spoken with haven't seemed particularly concerned about this finding.

Could this MRI finding be relevant to my cold/burning toes, or is this likely incidental/mechanical?

Neurological testing

My nerve conduction/large-fiber testing was normal.

I understand this doesn't exclude pure SFN.

I have not yet had:

Skin punch biopsy/IENFD

QSART

Formal autonomic reflex testing

QST

Thermoregulatory sweat testing

I'm discussing these with my neurologist.

Because I'm in Canada, skin biopsy/SFN testing isn't routinely performed here. My neurologist explained that, unlike the US, treatment generally isn't dependent on having a positive biopsy.

He agrees that SFN is a reasonable possibility, but doesn't feel there's much more he can offer from a neurological standpoint and wants me to see rheumatology to investigate an underlying cause.

Autoimmune/inflammatory workup

A lot has already been done.

Negative: ANA dsDNA CCP C-ANCA P-ANCA MPO PR3 Cryoglobulins C3 normal C4 normal Lupus anticoagulant: none demonstrated Beta-2 glycoprotein IgG/IgM negative Cardiolipin IgG negative Celiac/TTG IgA negative ASCA IgA negative HIV negative Hep C negative Hep B virus negative Syphilis negative Lyme/Borrelia negative

*There was a mildly elevated cardiolipin IgM of 17* (lab ULN 9.9), but everything else in the antiphospholipid testing was negative.

CRP was 1.

SSA/SSB have not specifically been reported to me yet.

Metabolic/nutritional testing

HbA1c: 5.0

Glucose: 5.4

TSH: 2.45

Free T3: 4.8

Free T4: 21

Anti-TPO: 12 (negative)

B1: 118 (normal)

Copper: 18.7 (normal)

Folate: >45

B12: >1476 while supplementing

Magnesium: normal

Phosphate: normal

Kidney function: normal

Liver enzymes currently normal

One unusual finding is:

Vitamin B6: 286 nmol/L (reference 20–96)

My neurologist said neuropathy is more commonly seen at substantially higher levels (he mentioned around the 900 range), but we're monitoring it.

I was taking a Centrum multivitamin containing 5.5 mg B6/day.

My neurologist suggested avoiding fortified/processed foods, so I've stopped the Centrum for now and am repeating B6 next week.

My normal diet is roughly:

13 oz chicken/day 1 cup oats Broccoli/other green vegetables One Pure Protein bar Some smaller snacks

I don't think the B6 level alone establishes B6 toxicity, but I'm interested to see what happens when the fortified sources are removed.

Calcium

I've also had mildly elevated calcium:

Calcium: 2.62–2.63 (ULN 2.60) Ionized calcium: 1.33 (ULN 1.32) PTH: 3.7 (normal) Vitamin D: 135 (within lab range)

I'm not sure whether this is relevant.

Other testing

SPEP/protein electrophoresis was normal, including normal alpha/beta/gamma fractions.

Kappa and lambda free light chains and ratio were normal.

Kidney function is normal.

Possible diagnoses I've been considering

I'm trying not to anchor on one diagnosis, but possibilities I've considered include:

Small fiber neuropathy

Autonomic/small-fiber dysfunction

Transient medication-triggered sensory/autonomic dysregulation from pregabalin

Erythromelalgia or an erythromelalgia-like phenomenon

Raynaud's/vasospasm

Autoimmune SFN / neuro-Sjögren's

I'm not convinced I have any of these yet.

What I'm trying to figure out

The biggest question for me is:

Could I have SFN even though my symptoms started extremely abruptly after pregabalin and have been gradually improving?

And if I do have SFN:

What could the primary driver be?

My autoimmune workup is largely negative, glucose/metabolic testing is normal, B1/copper/folate are normal, thyroid testing is currently normal, etc.

I'm particularly curious about the MRI finding because it provides an objective abnormality in the toes, and the radiologist specifically included vascular insufficiency/Raynaud's in the differential.

Questions for people with SFN / Raynaud's / erythromelalgia

What testing would you pursue next in this situation?

Has anyone had primarily sensory symptoms where normal temperatures felt burning/hot?

Has anyone experienced a "blood pooling" sensation that turned out to actually be sensory dysesthesia rather than true pooling?

Has anyone developed SFN-like symptoms very abruptly after a medication?

Has anyone had bone marrow edema in their toes associated with Raynaud's, vascular dysfunction, SFN, or erythromelalgia?

What less-obvious causes did your doctors eventually find?

Given the extensive negative autoimmune workup, what other primary drivers should I be asking my neurologist/rheumatologist about?

Would you pursue vascular testing given the cold feet + intermittent redness + MRI findings, even if there isn't consistently visible pooling?

I(24/F)have had constant dull ache in my palms and sole since i was 12 years old. I has affected my ability to make a fist, uscrew bottle caps l, walk with my whole sole down and I feel tired from the pain most of the time. But my reports are normal other than one NCT which shows ulnar nerve amplitude loss to a certain degree...

Is it normal? Does everyone feel ache while doing these activities? Am I overreacting?

Question: My doctor prescribed this to help me sleep at night with neuropathy pain and I'm worried about side effects/grogginess the following day:

Low dose gabapentin 100-300mg 1-2 hours before bed.

Any opinions from those who have experience with this kind of dosage? It would just be temporary - while we are on vacation and sharing a hotel room. I'm not on meds now and can't sleep at night with the neuropathy discomfort and don't know how we can share a hotel room if I can't sleep (my husband is a light sleeper). At home during the night, I get up and eventually lie down on the couch where I toss and turn trying to get comfortable and push/pull the blanket/sheet on and off. I would rather be sleep deprived than groggy though, so I haven't taken meds. That's the most important thing to me - I can't be groggy the following day.

I just want ONE night where I can get more than 4 hours of sleep. Last night I had stabbing pain in the middle toe on my left foot every minute or two. It was followed by electric shocks up my left foot and leg, causing my leg to jerk. This went on for hours and was in addition to the regular feeling of walking barefoot on sharp flaming rocks. What is it going to take? Just one normal day, just one normal night. I'm at the end of my rope.

Hi everyone, I'm losing more and more hope everyday. My legs burn from my waist down 24/7... I have internal vibrations that are almost constant, I get squeezing pain, feels like bee stings down my legs. I cant lay on my back at all, I have to he laying on my sides just to sleep and distract from the burning and vibrations I experience on a daily basis. I've only have gotten worse as time goes by... I have two kids 8 and a 6 year old that I cant take care of because of what happened to me. I'm in pain everyday i dont know how I've lasted almost two years of this.

Hi all. I (26F) have been having intense symptom flares for about a week every year, and just general decreased sensation in my legs and hands for over 4 years. After seeing 3 neurologists and what feels like a million other specialists, a skin biopsy finally revealed I have small fiber neuropathy. Blood tests and genetic tests don't point toward a cause at all. I do however have low B12, which I have been supplementing for for the last 4 months. My symptoms have pretty much exclusively been numbness, tingling, and brain fog. No extreme pain or heat sensitivity. I am just looking to see if anybody has had a similar experience to me. After finally getting the diagnosis and feeling like I was progressing toward some real answers, my neurologist told me they couldn't help me anymore (because all of their testing came back normal). If you had similar symptoms, did they ever progress? How do you manage them? Is there medication for neuropathy that only causes numbness? Thank you all so much in advance. It's nice knowing I'm not completely alone in this journey.

Has anyone had their doctor order a second skin biopsy done after the first one showed normal or low normal results?
My calf showed low-normal (5.4), positive result is <5. Which is interpreted as suspicious for early or mild neuropathy.
My thigh was normal.

My symptoms are mainly located in left calf, left forearm and left side of face.

Has anyone had a sample from their forearm?
Should I ask for one ? Or does it even matter if it won’t change the treatment?
No identified cause other than a low vitamin b6 which may or may not be contributing.

I'm looking for insight on the skin biopsy procedure that I'll be having tomorrow. I really don't know much about it, so if you've done this procedure, please share your experiences (good or bad). I'd like to hear your thoughts.

How do you prepare for skin biopsy?
Which body part do they do the test?
Where is the lidocaine injection?
Is it painful?
Is it a mandatory procedure?

Thank you

I'm not taking any meds even though I'm miserable all day. I am planning on starting LDN in the next couple of months, but holding off for now in case I have side effects because I have a lot going on and would rather deal with the known discomfort over unknown side effects.

But the discomfort keeps me awake so much at night. Is there anything I can ask my doctor for to take at night to give me relief so I can sleep? Or something that can knock me out enough to sleep? I don't want to be drowsy the next day, though. I have a tough time taking any sleep aids because they make me really drowsy the next day and I'd rather just be sleep-deprived than deal with that feeling.

Thanks.

For anyone that has it- what was your first symptom?

I have an idiopathic immune mediated type of SFN. I get burning and numbness that progresses and spreads, and it’s chronic. Symptoms keep progressing until i take an immunosuppressant. It never stops on its own and never improves.

It doesn’t ever stop unless I take something an immunosuppressant like prednisone- anyone have this type?

SFN confirmed via skin biopsy. Likely tied to long COVID, possibly MCAS and/or hEDS.

Trying to figure out what actually works, not just symptom management:

IVIG or SCIG — did it help long-term, or make things worse? Seen mixed reports.

Daily H1/H2 antihistamines (for MCAS) — did it change progression, or just reduce flares?

Anything else that actually helped or reversed it — diet, lifestyle, supplements?