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- čas přidán 24. 07. 2016
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This video explains small fibre painful peripheral neuropathy, it's symptoms, causes, diagnostic tests and treatments. If you found this useful, please support this channel by clicking Subscribe and giving me a thumbs up!
Amongst the causes discussed are DIabetes, Pre-diabetes, Alcohol neuropathy, B12 deficiency and Thyroid dysfunction as well as rarer causes such as GBS, Coeliac and Inflammatory Bowel Disease, SLE, Sjorgens, Fabry’s Disease, Hepatitis, Amyloid, HIV, Paraneoplastic Syndromes and Hereditary Sodium Channel dysfunctions.
DIagnostic tests discussed and demonstrated include: Thermal Thresholds, Sympathetic Sweat Responses, Cutaneous Silent Period, Laser Evoked Potentials, Contact Heat Evoked Potentials (image from Medoc Ltd, www.medoc-web.com), Laser Doppler Flare also known as Axon Flare (image from Moor Instruments, gb.moor.co.uk/), Micro-neurography, QSART and Skin biopsy.
Treatments discussed follow the UK's NICE guidelines 2013 for non-specialists and can be found by clicking this link:
www.nice.org.uk/guidance/cg17...
As with any CZcams video that contains open comments, there may be occasional responses to this video advertising products or services. Please be aware of this and I, respectfully, do not endorse these or any treatment not discussed in my videos. - Věda a technologie
I've had small fiber neuropathy for at least 10 years and it is devestating. I have it all over body. I've done almost every treatment known with little to no results but I tried CAPSAICIN CREAM which heats up my skin but it is by far the best thing I've ever used. I use it atleast 5 times a day and it has made life bareable..
what are your symptoms. Because my skin is allready burning severe. And you use heating cream? Please let me know.
Can this cream be a written Rx by my doc? Thank.
My doc gave me trental and told me to take alpha lipoic acid which started working in days. After suffering for years with moderate to severe nerve pain it’s getting better
I was recommended by a neurologist to use capsaicin or bio freeze. I bought bio freeze but will try capsaicin if it doesn’t help. Does your body jump when you sleep?
Did you try acupuncture? I’ve heard it helps.
I wish a came across this video 8 years ago. Mine started as SFN in feet and now it’s LFN in feet and hands. Great video, I’m due a spinal cord stimulator in my neck and back in December and your video echos the disease excellently. Thank you
R u fine nw??
Was your spinal cord stimulation successful
I would like to know as I have been offered this for my small fibre neuropathy best wishes
Thank you for your comments support!
You are absolutely right that there are plenty of extra points that could be talked about, but I wanted to keep it succinct and within 10 minutes (which is fairly long for CZcams) . Wishing you all the very best and only good health, Simon
Hi Dr Simon. I have a question about sfpn and fibromyalgia.
I haven't been diagnosed with neither I suspect both, based on 5yr researching my symptoms
My doctors haven't picked up on the very apparent symptoms of sfpn (I've seen 5 different doctors over 5 years, none have had any suggestions and I asked for every test I've had, mri, ultrasound, ncstudy etc)
I suffer the same symptoms u talk of, for me it gets worst later in day and at night, I also have toilet problems, fibro pain etc but the nerve pain is obvious.
Everything gotten worst, the pain, the frequency, toilet accidents, how random and scattered over body the pain is. Still not one doctor or specialist is prepared to offer any help or advice, 3 of the doctors said its fibro but wouldn't put it on paper. The only thing they've prescribed is naproxen? (I have IBS and gastroreflux!) And it doesn't help with nerve pain anyway?
Where do I go from hear I've lost 2 jobs, and have been off sick at my current job for nearly a month.
my doctor said everything been tested, what do u want? do u want further investigation?"
(She asked me this but the week before she said) " everything has been ruled out, I'll speak with a college and we will be looking at a fibro diagnosis"???
I asked for a skin biopsy as the scan she sent me for doesn't pic up small fiber neuropathy. She was clueless about this and said she had never heard of a skin biopsy being done on nhs.
Please any help or advice would be greatly appreciated, thanks
Just a note I suspect sfpn due to the research I've done indicating sfpn in 43 to 50% of fibro patients. I thght a skin biopsy would help with the process or be the logical next step as she had nothing up her sleeve??
@@damienmccaskill4497 what's nhs?
I received last week a diagnoses of small nerve fibre neuropathy after 6 years of burning. Started in the soles of my feet for 1 month, then lower legs and next day upper legs. Not in feet any more but now too in hands and lower arms. Amitriptyline 50 mg's takes the edge off it.
Told to go back to my neurologist for pain management.
Have a theathered cord at t6-t7 and bulge in disc c3-c4. Gone through the change but still hot flashing. Have boarder line/low B12, high blood pressure. Scalp dysythesia... Rosacea. Walking helps.
Where are the cell bodies located for the small nerve fibres? Are these the neurons in the Dorsal ganglion root?
I have small fiber neuropathy thats causing autonomic issues... heart lung digestive... i also have nuropathy in my muscles... i experiance constant spasms so severe that i bruise and have sprained muscles doing nothing... all the 'typical' pain issues... sensitivity issues, i sleep with micro fiber blankets, clothing has to be just right, i have hearing loss vision loss cognitive issues, the list is massive...
As for the way ive been treated.... ive been put in psychwards...and challanged to fix my self... qnd i did qnd yet im still very very sick...
Thank you for such a detailed video...the last time i looked for info on small fiber was a long time ago, every neurologist ive seen over the last 11 years i told i was diagnosed with small fiber neuropathy, they ignored the fact.... dismissed it like it couldnt cause half my issues... im finally able to see the neuro that diagnosed me originally and im back to getting real answers...
I use tramadol and have for 30 years.... its the only thing that helps my issues... i will be sharing your video with my primary, he helps me manage my pain script, and in arizona that is a rare find.... you just confirmed what i know and have had to fight for for the last 30 years and thats tramadol.... i take 100 mg, UP TO 4 times daily, i normally take it twice, common 3... if i hit 4 a day for to long, i self titrate down to twice daily and go to bed....
I have had small fiber neuropathy for a while, and I take morphine. It is the only thing that covers up the pain.
I have doctors that pretty much accused me of being a junkie for taking it, and they say it is not for neuropathy.
This drives me crazy, because the pain from this neuropathy is terrible, and if morphine works, what the hell?
Who are these doctors to judge and accuse me of being a junkie?
Hi Lisa I am in your situation too only I have a pain management doctor who understands that I have pain She is an unusual doctor because she has a lot of lyme patients and seems to understand that people suffer and she actually cares! I am on oxycodone and I hate taking it because I feel horrible on it but the pain is unbearable I explain it as if an 18 wheeler truck is on my legs it’s crushing 10/10 also it’s deep cold pain as if I walked miles in the snow with no socks or shoes or pants because it goes up to my hips I do have lyme and parasites and co infections but I may have a hereditary neuropathy because my mom has the same thing my toes are starting to curl under which is odd I am suffering all the time even on pain meds I take all the natural supplements for it it’s frustrating You are not alone God bless you!
Im in the same boat. But my doctors think seizure meds work for pain which they don't
@@saucerfulofsecrets8689 I don't even know if mine is SFN because GPs refuse to admit me to a neurologist. I have prickles all over and my skin has edema qualities and goes red. Wearing jumpers etc is bad.
Opioids were prescribed for me for years after a car wreck. I think for too long. Now I have some kind of neuropathy and painkillers make it worse. As if feeling a shock belt tightening around my chest wasn't bad enough. Like a heart attack. Or anxiety attack but with buzzing stabbing squeezing very sharp pain. Unexplained weight loss, fatigue, insomnia, gastric spasms, dry skin, extreme weakness, lumps on my spine, and more for 3 years still dying for a diagnosis and treatment that actually allows me to have peace again. This is so horrible.
@@JohnnyZenith Yeah what's with the resistance to getting a neurologist? That we might actually be helped from this super intense horrible pain that doesn't respond to painkillers!?
I am on my journey to figure out my neuropathy in my feet. I have been to several of my doctors nothing is broken, its overuse pain try a walking boot. It's both feet being effected. Overuse pain general goes away after a while and rest. My pain is consistent morning to night with numbness, tightness, some swelling, burning sensation in my toes at times electric shock feeling that will take your breath away. I see my neurologist this week and I am hopeful we can start to really understand why my feet are this way. It has really take a toll on my day to day life. I do feel like it is nerve related my endocrinologist mentioned Tarsal tunnel and he was the one that suggested I see my neurologist. I hate feeling this way all the time it's so exhausting by the end of the day. Hope everyone can find the answers and treatment they need.
Thank you for this information however where can I get tested and treated uk..
Hi Dr is that test done in New Zealand, can you please let me know.
I contracted reactive arthritis back in 2004 and I still have the HLA-B27 identifier in my blood. I am seeing a rheumatologist in April. I am on amitriptyline, it is doing faily well. Any other advise you can give.
what does the loud noise mean when doing the nerve test?
Asia I am with you. It is coming up to a year and I am, maybe close to a diagnosis. I have a referral for a skin biopsy. I have gone to specialists to learn that everything is healthy. I have blood pressure and pulse that range from dangerously low to dangerously high. I have poor balance due to not feeling anything. The flip side is when I do feel anything I am in pain. I have nothing wrong with my heart, kidneys, liver, thyroid, and brain. I just want to have an understanding why. The unknown to me is more upsetting than my symptoms. I am hoping for a diagnosis before my anniversary of my first doctor appointment. My neurologist told me that if the punch test does not point to a diagnosis the next step is a referral to Mayo Clinic.
The unknown and being dismissed and told to relax things take time is worse than the pain.
Doing TENS now. Feet was numb now sensitive and pain with nerves waking up .
I never had this burning prickly pain in my legs until I damaged my back .1st limber vertebrae .
It can be very debilitating. I have paracetamol when it gets over bearing , but I try not to take
anything . I have compressor stockings which helps. Worse at night , but make sure there are
no creases in bedclothes. Otherwise I have to live with the condition.
Hi Dr I'm 51 now when I was 16 I had gbs its left me having to wear calipers on my legs. Was in hospital for 6 months 3 in icu. Wat kind of nerve damage would I have ?? Thank you
Hi Simon, it's great you have interest in this subject. I am also Frum. I have small fiber neuropathy related to Sjogren's Syndrome. Sounds like you know the basics but there are plenty more thing to know in this area. Let me know if you interested. There are many tests you left and many things to update on what you spoke about..
My idiot doctor and the so called expert rheumatologist I saw said there's absolutely no link between sjogrens and SFN. Hence why I lost faith in western medicine and doctors.
Also she says I have Sicca syndrome but no evidence of Sjogrens.
I've had small fiber neuropathy for at least 10 years and it is devestating. I've done almost every treatment known with little to no results but I tried caspacian cream which heats up my skin but it is by far the best thing I've ever used. I use it atleast 5 times a day and it has made life bareable..
Thanks - not much actually. It's the electronic amplifier picking up the small current used to stimulate the nerve. I kept the sound on so that viewers could appreciate that something happened. Bw Simon
I had an EMG which consisted of two days of about 3-4 hours each day, one day for legs and one day for my arms. Needles were first put all up and down each side and recorded in a computer to test my muscles then electrodes were placed all up and down to test the sensory nerve responses. After that I had surgery in the lower left ankle biopsy of nerve and it is showing a rare profile suspicious for a degenerating fiber best seen on a cross section evidence of fiber loss specimen is Red-tan cyndrycal 4.2 cm L & 0.2 x 0.9cm D no diabetes, amyloid, vasculitis, inflammation, GLobulins all normal, no proteins detected, antibodies good! B Complex good! My blood is so normal it is perfect except D3 which I supplement every morning! BUT that weird statement on the pathology report is the only thing that is off he has to send it off even further? My Neuropathy encompasses my entire arms and legs now and my body is convinced that every time my feet touch something I am damaging them! It is complete horror! I have even tried 4, 3 hour, 300 mg, ketamine infusions! It seems I have done everything 5 doctors going to see them 8 to 10 times per month still no relief! Wouldn't wish this on anyone except maybe Hitler or Stalin, LOL! I have to be at the doctor's tomorrow at noon still cannot sleep!
Dr Simon Freilich you mentioned that small fiber neuropathy is more common than large if alcohol is the cause. What is the prognosis and typical pattern or progression for alcohol induced SFN. It is extremely difficult to find information on this from. Dr or the Internet.
This video is very helpful, wish I saw it 2 months ago .I have small nerve fiber neuropathy, my symptoms of paresthesia started 10 weeks ago in my extremities and face. My pains include burning pain, shooting pains, and very sharp stabbing pain. I am not diabetic. My lab tests have been normal ( Hemoglobin A1C, B12, Lyme test, CBC w/ diff, Vitamin D , Lipids, Zinc, Copper, Magnesium, metabolic panel, Thyroid function TSH, T4, T3, ESR, serum protein, Liver function panel, ANA were all normal). My brain MRI showed lesions near the ventricles that were already there back in 2015. My EMG/ nerve conduction test was normal. I will ask my primary care doctor about glucose tolerance test because diabetes runs in my family and I have a few risk factors. I want to avoid a nerve fiber biopsy. I went to a neurologist and he was useless , he ordered no tests and had no interest in helping ,He did not tell me anything, I learned about small nerve fiber neuropathy from a different neurologist that did the EMG /Ncv test. I take gabapentin for pain and it helps but I would rather just find out the cause and treat that instead. .... I started getting pain 4 weeks after getting the flu shot so I wonder if my neuropathy was triggered by the flu shot. Doctors tell me that never really happens , but I don't agree. SIDENOTE: Covid-19 can cause neuropathy, I have never had Covid -19 and tested negative for SARS2 Covid-19 antibodies) I was tested by both swab and blood test both came back negative.
Hi there your comment struck me as I am experiencing something g similar. My pain started like pin pricks all over. It’s moved to shooting, stabbing pain and awful itching everywhere. Bloods are normal with high Iga and Ige levels but MRI was normal. Being treated with Amitriptyline but I’m switching to Pregabalin. I too want answers. I’ve requested a small fibre test be down by the neurologist. Fingers crossed we get to the bottom of this but I’ve been told it can be idiopathic meaning they don’t know why. Don’t worry about the skin biopsy tests. I’ve had one on my stomach and there’s no pain at all.
did you ever got mono as a kid ??
are u fine now brother?
OMG this is my story. How did it go for you? I'm having burning pain and getting worse fast. Had this for two months. A month before I had forth pfizer covid vaccine and two weeks before I got shingles. I think it could be an auto immune reaction. So how are you now and what happened??
I also want to tell you that there are cases of small fibre neuropathy after covid vaccine so it's not impossible it was a reaction of the flu vaccine, but I really don't know.
Hello, i have a question about emg results for a patient with small fibre. If someone is diagnosed with small fibre including fasciculations but without any weakness for 3 years but the emg shows fibrillations and positiv sharp waves what could this indicate?
Hi doctor I have fiber and I didn't have my perioud how I suppose to it come for one day only so I want to know if u can plz reply me the cause of it
Dr., I have numbness in the ball and toe of my feet since having a lower lumbar laminectomy 18 Mos ago. No more spinal pain in (was it ?) L1 - L4 . Surgeon said numbness is due to my type 2 Diab.. But, BEFORE operation I had NONE of this numbness. I don't get sleepy during the day so don't need insulin.. (Must have caught it just in time)..I Only need Metformin, 1x/day..
Thanks for such excellent extensive medical explanation !! Mazel Tav !
I'm going to try Capsaicin cream ..FOLKS, if you use this cream, do not, I repeat, DO NOT get it in/near your eyes !!
Mark, Los Angeles
Thank you very much sir even physical therapy can also be helpful in pain management electro modalities like TENS can be helpful in managing the pain with some exercises.
I've had small fiber neuropathy for at least 10 years and it is devestating. I've done almost every treatment known with little to no results but I tried caspacian cream which heats up my skin but it is by far the best thing I've ever used. I use it atleast 5 times a day and it has made life bareable..
I have lots of problem that i feel tiredness, memory lost, numbness, dull mind, heavy head everyday, sometimes is got pain little on hand and leg. I have no confidence and can not focus on any work of any reason. So please help me out.
Loving your Video!! With Great info !!Thank you so much now I know why I am in so much pain with this horrible disease I was diagnosed in the first part of 2018 And then In 2003 I was told I had Spinal Stenosis and Now !! My skin itches my leg go numb!! My feet are always cold 🦶 and my hand itch God help Me!!!😣😣😟
you are not alone...SO depressing and itchy and sweaty too... it's HORRIBLE - yes cold feet always! 😞
I feel your pain. I have the stinging and sweating as my main symptoms... I can't regulate my temperature. Cold is agony and yet I can be sweating profusely at the same time as the stinging from being cold. It's a nightmare. It's all over my body arms and legs. It drives me nuts and I haven't found anything to help. I used to get sharp , shooting pains and tightness around ankles , twitches all over but since stopping taking B6 ( I was found to be toxic in this) all of that has pretty much gone.I love to read , write, act, sing, direct and produce shows. I do not want the mind numbing drugs...so what the heck do we do?! ☹@@Cosmogirl014
dr your so right i have this iuse to go to pain management they gave me one pill a day i had terrible pain i ask the doctor if he could increase the pills to 2 a day so i would be able to sleep instead of doing that he drop me off pain management
..
I went to a neurologist today thinking I had RRMS. He thinks it’s small fiber neuropathy. I’m yet to complete all the MRI’s and testing. If it is SFN, how is medical cannabis for treatment? I live in Florida where there’s a dispensary on nearly every corner now. I want to avoid traditional Rx if I can, but I’ve put this off for ten years and can’t handle it anymore.
Hey! I have a question. The doctors think I have small fiber neuropathy all over my body. But with all that tingling and burning I am getting more and more fasciculations. My eyelids, my nose all over body. Like popcorn. Does this mean that the motor nerves are also getting damaged?
Can SFN induced by antiboics regenrate ?
My problem is my phone display broken when i called then my left forhead touching n thaw out but i igonor this pain, after mny days laters my pain is go but now my nerve pain ... Why
any how you lecture is valuable, always.
Just a note I suspect sfpn due to the research I've done indicating sfpn in 43 to 50% of fibro patients. I thght a skin biopsy would help with the process or be the logical next step as she had nothing up her sleeve??
0:45 response rates to treatments often unsatisfactory. 3:15 some small fibers also autonomic system incl bowel motility, blood pressure when sitting up, salivation, sweating, swallowing. 7:00 microneurography. 8:00 only 50% of small fiber neuropathy have identifiable root causes. 8:30 alcoholic neuropathy is often small fiber, vitamin b12 and thyroid dysfunction can be tested. 10:10 common cause of rx failure is not taking the maximum dose tolerable. capsaicin creams for localized pain. lidocain patches.
I've had small fiber neuropathy for at least 10 years and it is devestating. I've done almost every treatment known with little to no results but I tried caspacian cream which heats up my skin but it is by far the best thing I've ever used. I use it atleast 5 times a day and it has made life bareable..
I've been suffering with SFN . I call it the big bang boom cause about 5ish 6 yrs ago thats when I was hit hard with my symptoms like boom and the sounds of an explosion. They didn't know what what wrong. I didn't know. I was always numb with lightening blots smashing me. For so many years. At the end of last year they finally found what what wrong with me. I was so hurt that my neurologist let me go so many years like this, then I got worst. She said well no signs of large fibers. She said I not sure but it could be small fiber. I said please give me that test. She said we don't have that type of technology for that type of test. I'm getting worst and worst. Then I relapse and had them stuff me with lbs of chemo. I was dying. I was falling due to my feet being number. I dropped things due to my hands being numb. I was being eaten and bitten up by my nerves. I promise I slap my arms legs feet etc because I was being bitten my bugs. But nope it was my control nervous system driving me crazy like a bat out of hell. I'm very sick still. Moms would say we'll you are in remission, ain't nothing wrong with you. I told her I lost most of my hearing I us a cane wheelchair and walker. I cry in a quiet spot where no one heard or see me. She is so mean to me. Till this day I'm in a dark place . And I'm suffering. I am 40 yrs old but to mom I'm 10. After all these biopsy, all this suffering She still bullies me just like she did when I was suffering from cancer as a teen. I need help.
Look
Keep seeking help. You deserve better. I will pray for you.
Does the face have small diameter fiber ?
Thank you, very useful video
Can u explain the hot and cold sensations
I have small fiber neuropathy... Dxed over 15 years ago now.... I also have autonomic neuropathy. I've had a major portion of the causes ruled out.... And I'm left in an extremely distunctional nervous system.... I ignore my pain to the point of passing out... And then gas-lite by at least 8 major neurology offices in PHX Az. Every last one ignored my small fiber neuropathy diagnosis.... At one point I was put in the psych hospital demanding imaging over drugs.... Turned out I needed spinal surgery and lived with the damage for an extra 18 months.... Us medical Drs ... Suck!!!!
Great information thank you very much
Thank you for this informative video. Can a nerve conduction test worsen neuropathy and possibly accelerate muscle wastage? Local practitioners have indicated that it should not...however in reality it appears to have done just that.
Hi, no they wouldn't do that. Bw Simon
This happened to me as well in my hands. Had nerve conduction test
within 8 hours both my hands went numb
@@DrSimonFreilich I have been to 6 different specialists(Endo for blood sugar)(Neurologist for nerve damage)(dermatologist)and 3 podiatrists,and an MRI.Everthing turned out to be neg.About 9 months ago I was working outdoors long hrs and felt my left foot going numb and burning,also the end of the day my feet would be sweaty,and when the weather would chill my toes would be cold.often times I do feel my toes feel cold to the touch and the top of the arches are warm?Its all toes left side and right and the very top of the upper soles or balls of my feet I will get a burning itch.If I soak my feet in Luke warm water the pain subsides within 10 minutes.I live in the Boston ma area and would think I should have this resolved?Thanks dr.any suggestions of treatments or specialists Iam missing?
He'll yes they can.
What can be done if none of those drugs work i have tried everything and at my wits end. Can amputation work and then get my life back I have got a scs fitted and that is OK but its still too painful to walk.the scs would be more helpful with the phantom pain I think. Can this be done.
Hi Gill, I don't know your personal issues or situation, but genuinely-amputation solves nothing and only likely to make things worse! Bw Simon
to make it short we do see tease and looking for tumors pretty much once a year looking for a cancerous tumor that cause the paraneoplastic, I did have c-diff many years ago and it seems like it was 6 months after that when it started in both my feet and then up the back of my legs and then a few years after that I woke up in the middle of the night with extreme cold share pain in my arms I have a feeling it has something to do with my bowels they tell me know but I have now because of the c-diff which I was hospitalized for a week and quarantined and couldn't be with my daughter for a whole month I have torturous bowels I swear this all started from that and they tell me no I also had a hysterectomy I had endometriosis and I was told they did see cancer cells that were left in me but they would die out or they would be gone and nothing to worry about could that have started it back in 2004 and then cause issues for 2 5 years later those are the only health issues I ever had, I have a very great neurologist was the one who said just out of me telling him my symptoms that it was small fiber sensory neuropathy it was the one who sent me to University of Michigan which sent my blood work and did the biopsies to the Mayo Clinic out of state they seem to not be able to do small-fiber sensory neuropathy blood work or anything here in Michigan things need to be sent out of state to Mayo Clinic and my insurance does not cover it
Dr Simon Freilich you mentioned that small fiber neuropathy is more common than large if alcohol is the cause. What is the prognosis and typical pattern or progression for alcohol induced SFN? It is extremely difficult to find information on this from doctors or the Internet.
Great question! Alcohol has a direct neurotoxic effect and is often associated with nutritional deficiencies too (particularly thiamine) which also leads to nerve damage. The degree of recovery will therefore depend on the degree of nerve damage and the ability to abstain from further alcohol and the replenishing of proper diet and vitamins. As such, there is a mixed literature on the degree of reversibility. Thus it is crucial for abstention, and healthy living to commence as soon as possible. However, and unfortunately for some, symptoms can persist despite these measures because their damaged nerves will have gone past the point of no return. Hope this helps, Bw Simon
Dr Simon Freilich thank you. From your experience and knowledge is it typical for alcohol induced SFN to rapidly spread to other areas of the body (over the course of months) even when alcohol is completely removed and there are no nutritional deficiencies present? I ask because I originally thought alcohol was the cause of my SFN, but due to the progression over the past 3 months my Dr. and I are starting to think autoimmune disease may be the cause even though we have not found a definitive blood marker. I have been sober and eating clean since May. It seems like most who suffer from alcoholic neuropathy either stop progression after alcohol cessation or go through a much slower progression of symptoms.
@@SweetBerryWyne Another very good question and I don't know. The difficulty with SFN is in attributing causation as around half of cases have no identifiable cause. So as you say, could this be another process..Other possibilities could also include that once triggered, it might continue regardless of stopping the precipitating cause. Alternatively, and on a positive note, healing nerves can also be painful as they regenerate. Six months isn't a long time in terms of nerve repair and realistically one needs around two years in feet. So hang in there and don't give up as it might be alright in the end! Bw Simon
@@DrSimonFreilich I've never been a drinker/smoker, but have had pretty severe "fibromyalgia" since around 1988. Jaw pain/clenching, dry eyes, frequent bloody nose, migraines, neck/shoulders/inner elbow/upper back, mid back, low back, upper right buttock stabbing, burning, electrical zaps. Hands and feet/ankles have severe cramping when I lie down. I have burning/tingling pain in feet so time spent standing in my kitchen, my favorite hobby, is very limited; burning/tingling in feet is worse when I lie down. No diabetes or numbness (hypersensitive to sensation and nearly everything else like lights, sounds, smells, textures) Also have quite unpleasant anogenital burning that occurs when I lie down, unprovoked as I've been alone for 20+ years. I sleep poorly anyway, but do so with lightly wrapped ice bags in this private region. Burning pain is by far the most common pain I have with electric zaps occurring in neck, legs, pelvis. Very frequent eye twitching, mostly on left.
Migraines are triggered by many things that I CAN control by avoiding, but I cannot stop them from occurring nearly daily from burning in my occipital region if I look down, up, to either side for more than a minute without adjusting; this spreads up back of scalp to begin the stabbing throb in my right eye. Sometime they just happen for no cause I can determine; I always carry Imitrex with me and take it far too often (never closer than 24 hours).
Have been diagnosed with fibromyalgia, migraines, TMJ (later told there's nothing wrong with the actual joints), deviated septum from old injury that needs a second surgery, low platelets that have since corrected to just "low normal," fatty liver. Paroxysmal ventricular tachycardia last year. Used to have extremely low BP, now somewhat high I'm told, and some urinary issues.
My doctors are generally annoyed by my issues. I get the impression they think I exaggerating or perhaps "want attention" which is quite inaccurate considering I detest attention directed my way. Just diagnosed with Asperger's at 68 and am a dedicated hermit. I don't enjoy visitors, or even talking on the phone. I detest doctor visits and only go when I just can't stand the burning anymore, and give in to trying to get help one more time.
** Could this be small fiber neuropathy? I've never heard of it before.
excuse the spelling or misplace wrong words I'm doing speak text and then sending it without reading it first. My apologies please try to figure it out or if you have any questions I will answer
Thank you for this very useful insight, Doctor.
You did not mention antacids as possible cause, even though antacids severely reduce the intake of thiamine and B12. Unfortunately antacids never come with a warning about vitamin B shortage, and if they do they only mention B12 and never thiamine.
You did not mention any reversal either, which leads me to believe that reversal is in fact not possible. But how about testosterone supplements? Wouldn't testosterone stimulate nerve regeneration?
Also main stream doctors don’t test for gene defects like mthfr which can effect ones b12 level
Good question!
Where is this done in the UK? Available on the NHS?
@@JohnnyZenith What are you talking about?
What is the TREATMENT
Almost sounds like SFN = CRPS?
Hello Dr thank you very much for your informative video , do you recommend corticosteroids shots for the small fiber neuropathy? I know it has some negative side effects, i have numbness on my fingertips for almost 3 years .i I had 2 EGM tests the first one misdiagnosed me and said it's carpal tunnel the second time they said they cam't find anything. Except the numbness and lack of sensual touch i am pain free, it's just the lack of proper diagnoses can be really frustrating.
Hi Arthur, personally causes needs to be identified rather than treating on spec. especially as long term steroids have side effects. Bw Simon
@@DrSimonFreilich Thank you for the fast reply Dr Freilich
i have been examined by 3 doctors and had 2 EGM tests and none really helped at first they said is most likely carpal tunnel and my at the first EGM test the woman told me that too, so i took precuations that it'scarpal tunnel foror almost 2 years. Recently i had a second EGM test the person who examined me said it's not normal and that my nerve responses are fine, is there any diagnosis examination that you suggest? I will have another blood test soon and my last one said my blood sugar was at a dangerous level but not high enough to be full diabetes.
@@Utubeasiangirls Have you been diagnosed with SFN?
@@citizen3000 i was diagnosed with paresthesia on my fingers which means there is something wrong but the doctors can't or won't really know what's causing it.
brother are u fine now?
I think this is the condition i have although no test of doctor can confirm. They all say im fine but the pain is consistent in both arms. Its been worse post vax! Debilitating burning, tingling, numbness around both condyles of the elbow. I have done all the Physio, strengthening etc and its been over 2 years. Im desperate for someone to hear me and guide me in the right direction. thanks for reading :)
does anyone have skin colour changes with this? I think i have SFN and the colour changes on my hands a lot - red and white in places
Yes
Yup
Is SFN a part of fibromyalgia, or do fibro patients get misdiagnosed, and they actually have SFN?
Hi Jacqui, they're two separate entities but having one doesn't preclude also having the other. Bw Simon
Dr Simon Freilich Thank you so much for clarifying and I appreciate your reply.
So basically you're saying that if the original cause of the issue has been addressed thus preventing advancement of the neuropathy, nothing can be done to assist in the repair of any damage that has been caused to the nerve sheath/fibres, only attempts can be made at pain control. I guess that's fine and well for those for who pain associated with their neuropathy is their greatest disablement, but supremely ironic for those of us who largely rely on the pain itself to achieve any level of mobility whatsoever. Pain from my neuropathy is certainly very disabling, but if it were removed, while I'd feel a lot more physically comfortable, I'd effectively be paralysed as with no pain, I'd feel nothing. I have had to learn how to re-interpret what as feel through pain to be my sole source of information as to whether I am moving or not, and in what direction and at what speed.
I've been suffering with loss of sensation for around a year (starting at my finger tips). The loss of light touch and vibration is most prominent in my fingers and toes and the numbness has gotten worse over the past 6 months especially in my outer left-hand side. I even have numbess in my abdomen (particularly lower) and chest. I have had multiple blood tests and MRIs and my brain and spinal cord are normal. Blood sugar is normal, iron is normal, immune system looks normal. The only thing they're checking again is my slightly elevated WBC. I've requested a nerve conduction test to try and get some answers but I'm dubious :(
In the same situation :( emg and muscle test are normal too
@@aishakhanam7482 omg I've never met anyone with the same thing!
Thank you for replying! Any diagnosis yet?
@@aishakhanam7482 nothing as yet, I am waiting to see a rheumatologist but covid has delayed that. Recently got very severe palpitations so may need to see a cardiologist too I think. I hope you have better luck with a diagnosis, it's a difficult thing to go through.
@@SM-fi1be Hey. You got anywhere?
I imagine you’ve already had EMG and NCS (Nerve Conduction Studies).
You didn't mention Lyme disease causing SFN. Thoughts.
Apologies for the omission. Bw Simon
Thank you! Could chronic use of Phenytoin lead to a small fiber neuropathy?
Thanks! That's a tough question. Yes its associated with (large fibre) peripheral neuropathy with chronic use but it's also used as a pain reliever in small fibre neuropathy! So quite confusing. Bw Simon
@@DrSimonFreilich Thanks for the reply. It is indeed confusing. Some neurologists I know think that it can cause SFL, but their evidence is anecdotal.
Is there a difference in small fiber sensory neuropathy (SFSN) and small fiber neuropathy (SFN)?
Hi, yes and no. SFNs tend to be sensory fibre affecting, but some may also have additional autonomic fibre effects too, so if it's purely sensory fibre affecting I can understand why some colleagues may refer to it as SFSN. Hope that makes sense. Bw Simon
@@DrSimonFreilich so that doesn’t affect motor function like ability walk and stuff correct?
SFN is kind of an umbrella term. Small fiber nerves control Sensory as well as Autonomic nerves
I have impaired pin prick sensations ..... and feet feel like knub ( after a burning sensation )...and my hands loose sensations ....
. I'm waitong a nerve conducting test.... then potentially a small fibre test .... they think I have ME CFS or small fibre neuropathy
Where do we find these kind of doctors?
Thought workers comp
fibre and fiber at the same??
It seems that Fiber is the US spelling and Fibre is the UK spelling
Please can I come see you!!!! I need help!! My gp
Is useless I am in pain so much!!! Diagnosed me
Over one phone call
Saying I have nerve pain! My body is in agony, my skin on my lower half is Agony to touch even my clothes can hurt. The cold makes me
Skin hurt so much I can’t even go out in the cold. Please please see me! I’m
Begging you. My scalp
Is so bad my hair can’t even be brushed. Please
Can obstructive sleep apnea cause small fiber neuropathy?
No. Bw Simon
@@DrSimonFreilich I have read that it can.
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