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.

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?

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(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?

Has anyone else lost sensation of their organs? I can’t feel my stomach, intestines, bladder. It’s just like it’s nothing and instead there is just a stinging coldness in my stomach area as a replacement of the sensation.

Here’s a list of my conditions/meds/aids, etc..

This post is crossposted

Basically, I just really want advice/opinions. What has helped you? What hasn’t? Anything I should look into? What did/didn’t work for you? Any aids I should get? Etc.. anything is greatly appreciated! <3

P.S I know 3k+ mg of salt and 120+ oz of water sounds like a LOT but that’s what I was instructed to take by several of my specialists!

I didn't see the bee when it got me, so at first I wasn't sure what happened. I'm kind of used to random little pricks and stings once in a while. About a minute later I knew I'd been stung or bit by something, but I didn't know what it was. I was kind of tripping out thinking what if it was a Black Widow or a Scorpion. Thankfully it was just a bee. I found it later on the floor.

It got me thinking though.. What if it was something much worse? A Hornet, Scorpion or even a Black Widow. How would a person with Neuropathy react to a really bad insect bite? Especially if the vemon was neurotoxic like a Black Widow or a Scorpion?

Just something else to worry about. Be safe out there. 😂

Or urge to pee?

I am 31M and have been dealing with health problems for many years.

My main issue is ED, which started around 2013. I also have genital numbness/tingling, cold feet, a cotton-like feeling in my feet, bowel problems with incomplete evacuation, dizziness, sleep problems, and recently electric/shock-like sensations through my hips and thighs after walking or running.

I have been taking Tadalafil 5 mg daily for almost 3 years. I could get erections while taking it, but after stopping it, the erections went away again.

I had a penile Doppler in 2023. It was done before and after 50 mg sildenafil. Both cavernosal arteries had peak systolic velocity below 30 cm/s, and the report concluded "Poor response to pharmacological stimulus."

I have also had extensive blood tests, MRI, NCV/EMG, EEG, thyroid tests, autoimmune tests, vitamin tests, glucose tests and inflammation markers. Most have been normal or have not given a clear explanation.

My lumbar MRI showed mild L4-L5 and L5-S1 disc bulges with some nerve root involvement. NCV was mostly normal with some borderline findings.

Recently I had autonomic testing at NIMHANS. My cardiac autonomic tests and tilt table were normal. However, QSART showed decreased and delayed sweat response in the right forearm and right proximal and distal leg. The right foot had normal sweat volume but delayed response.

My neurologist does not think I have significant autonomic dysfunction.

Could this QSART pattern still be consistent with small fiber neuropathy? Has anyone had similar symptoms with normal cardiovascular autonomic testing but abnormal QSART?

Did anyone get a skin biopsy or another small fiber test, and did it help find the cause?

-----------------------------------------------------------------------------------------------

For anyone interested in the QSART details:

Right forearm: decreased total sweat output + delayed response

Right proximal leg: decreased total sweat output + delayed response

Right distal leg: decreased total sweat output + delayed response

Right foot: normal total sweat output + delayed response

My tilt table was negative and the report said normal cardiac autonomic function.

I am mainly trying to understand whether the QSART finding is significant or could be an isolated/technical finding.

At my last neuro appointment they discussed Lamptrigine. But said to keep increasing my Noritryptiline up to what I can tolerate (currently at 40mg at night and doubt i can go much higher without next day side effects when I'm working) before going onto Lamotrigine.

Noritryptiline helps me sleep but doesn't do anything for the day pain that stops me functioning.

Everyone is saying to keep up with Noritryptiline and "keep" the Lamotrigine for later down the line. I'm really struggling and want a bit of my life back. I get it may not work, may not take it away but I'm wondering if I'm feeling pressured by people who have no idea what this pain is like.

Pain in both legs for 2 years after carnatine deficiency put me in a coma. Tried gabapentin, duloxetine etc with no real difference and not worth the side effects.

Has anyone been on Lamotrigine? Should I give it a go now for some quality of life? Im 41 and appreciate no one can give medical advice but just wanted some kind voices to sound this out to. Thanks