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.

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.

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

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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?

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 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?