Small Fiber Neuropathy

[stradivarius]

Thanks for sharing in so much detail Caulfield. That is a hell of a story, so glad you have come through all that and out the other side. I am sure your story will help others.

 

[Lavoris]

I was so happy to read your post. I have convinced myself (maybe a little less after reading your post) that getting too much Botox did me in. All over sfb in limbs mostly hands and feet. After a suicide attempt last year I sought help from a trauma therapist but still kept privately obsessing about that. I found an article yesterday published by a neurologist backing up my claim. I too went to Mayo and they did EMGs and inserted small needles deep into my muscles. Then a sweat test. Negative. Released w a DX of Central Nervous System Disorder. This gives me hope. I just started the program and I am seeing a TMS specialist here but I didn’t believe him when he told me if it was Botox it would have been gone. I really would love to hear from you as to how you let that go. Was it Mayo? My hands and feet don’t sweat but I’m gonna go home and sit in my tub until I wrinkle! I ordered a book by Dr. Moskowitz from his website Neuroplastix thigh was mentioned in an earlier post. I have thrown away so much money! I am off Zoloft and more than halfway off of Klonopin but I am still on Lyrica and feel awful about it. I know Dr Schubiner says to save it for later when it will be easier to believe you don’t need them anymore. Swinging for the fences when I feel benched.

I'm VERY happy to discuss my symptoms, as well as answer any questions anyone else have on this topic. At one point, I was even looking into killing myself as well as assisted suicide in other countries; I was truly planning for my own death because the symptoms were so relentlessness and just unbearable.

Now, I do have hypermobile Ehlers-Danlos (hEDS); I've read that over 83% of hEDS patients have autonomic nervous system dysfunction and mast cell activation disorder (MCAD). In the medical field, it's referred to as a "genetic trifecta." I believe that because I'm genetically predisposed to autonomic and mast cell dysfunction through hEDS, a period of extreme emotional stress in my life led to my body getting stuck in one of the nastiest fight-or-flight modes ever seen (also referred to as sympathetic nervous system overdrive).

I've experienced:
- Burning skin
- Nerve pain (allodynia) - so severe that I could barely hold my phone, type on a keyboard, grip a doorknob, etc.
- Altered sense of touch in my fingers and toes - not true numbness, but similar in the sense that the senstation touching an object feels different than before
- Tingling (hands, arms, feet, legs, head, lips, etc.)
- Extremely heavy and stiff limbs due to blood pooling and tension
- Excessive sweating, especially - but definitely not limited to - my hands, feet, and armpits
- Increased skin impressions/dents whenever any object (even light wrapping paper) gently touched my skin - skin impressions/dents are absolutely normal to a certain extent, but it was occurring much deeper and faster than ever before. Additionally, the skin impressions were sometimes very painful, such as when I'd sit on hard benches, rest my chin on my hand, grip pencils, cross my legs, etc.
- Fingertips that wrinkled almost immediately in the shower, as well as upon gripping objects (even when they were not even slightly wet or cold)
- Headaches
- Dizziness
- Nausea and vomiting
- Dry eyes and mouth
- Blurry vision
- Red feet with bulging veins when walking
- Occasional blood pooling and overly dilated blood vessels in hands when walking
- Chronic fatigue/exhaustion
- Increased need to use the bathroom
- Increased heart rate, especially upon standing - this was picked up on a tilt table test at Mayo Clinic, but was not considered severe enough to diagnose postural orthostatic tachycardia syndrome (POTS) that particular day. My heart rate does occasionally increase by 30+ BPM upon standing thanks to my hEDS, but this started occurring daily and on a much more severe level than ever before
- Increased Raynaud's-like symptoms and vasospasms where standing for even a few seconds would result in deeply yellow and purple feet from vasoconstriction, and my digits would become numb and red in the cold. Again, I experienced this to a much lesser extent as a child from hEDS, but I would say it increased by 85% and became seriously painful
- Mottled hands when walking, known as livedo reticularis. This is also common in hEDS, but later became increased for me
- Cold hands and feet - again, I had this as a child from hEDS, but it was worsened by over 50%
- Multiple chemical sensitivity - I had to completely stop drinking alcohol, vaping anything other than pure medical cannabis, occasionally smoking cigarettes, drinking sugary coffee with high amounts of caffeine, etc., and it was important for me to make peace with that
- Muscle spasms/twitching
- Facial flushing
- Dermatographia - commonly associated with MCAD, but can also be from an overactive autonomic nervous system

... and so many more I can't even remember at this point. My list of symptoms was ridiculously long - Mayo Clinic listed 30+ in my patient profile.

Note that some of these symptoms (e.g., excessive sweating, fatigue, facial flushing, vomiting, blurry vision, dry eyes and mouth, increased heart rate and POTS-like symptoms, vasospasms, fingertip wrinkling, etc.) may not sound neuropathic to someone unfamiliar with autonomic neuropathy, which occurs due to damage of the small nerve fibers that control and/or influence these types of autonomic bodily functions. I don't have CRPS/RSD, but many of these symptoms closely mirror it given the role of the sympathetic nervous system.

I've also had to deal with some pretty intense nocebo situations. Before I went to Mayo Clinic, I saw a handful of neurologists, all of whom said there was no way I had nerve damage (although one did put down "toxic neuropathy" in my online patient profile, as I had begun to complain of neuropathic symptoms after a weekend of heavy drinking and a week and a half of vaping propylene gylcol- and vegetable glycerin-based vape oil; that particular neurologist never asked me about my individual stressors, and none of us knew I had hEDS yet. What he actually meant to indicate in the patient portal was that I had nerve pain after ingesting toxins, but he didn't truly believe I had nerve damage. That said, it still terrified me, and I didn't understand his intention at the time). One of the best neurologists in the country, who performs extensive research across the globe and has decades of experience, said I simply had an overactive sympathetic nervous system from emotional trauma and referred me to a pain psychologist who was supposed to teach me biofeedback to calm my nerves. The neurologist had written a study on sympathetic overdrive with the pain psychologist and thought very highly of him.

However, the pain psychologist messed with my head by saying, "Why do these doctors not believe that something is really wrong here? You've indicated having a sensitive nervous system since your childhood. You know, half of what doctors learn in medical school is later proven to be incorrect - medical students are often told they are the ones who are going to make a big breakthrough in medicine or prove the information in their textbooks wrong. What I think is that you've always had poor circulation, and when you drank heavily that one weekend, the poor circulation and alcohol destroyed your nerves." (EVERY single physician I've ever repeated that last sentence to says it's basically IMPOSSIBLE for that to randomly happen to a young person who used to be able to tolerate alcohol and has no vitamin deficiencies or extensive history of alcoholism. Also, if my circulation had truly been that poor, the alcohol wouldn't even have made its way to the nerves throughout my body. Not to mention the fact that symptoms like excessive distal sweating that disprove neuropathy, and the way my symptoms immediately occurred throughout my body was not characteristic of alcoholic neuropathy. Yup, the pain psychologist truly is an idiot.) That's when I started looking into ways to kill myself and assisted suicide in other countries. I was saved when Mayo Clinic accepted me for an appointment the next business day. I was having trouble believing I didn't have crippling neuropathy because the other neurologists didn't even want to perform certain "gold standard" tests on me (e.g., skin biopsy, etc.) - they just said there was no way I had neuropathy.

Well, Mayo and University of Chicago performed the "gold standard" small fiber neuropathy tests (I had already passed some EMGs, but those really only look at large nerve fibers)... and everything was negative, just as they had predicted. My other neurologist was not happy when I told him about the pain psychologist. It was such a mess of a situation, but that's why I'm happy I didn't go through with killing myself or assisted suicide. Hang in there!

Also, to confirm, I've had the following large and small fiber neuropathy testing (includes testing for autonomic neuropathy): multiple skin biopsies, multiple QSART sweat tests, multiple EMGs, multiple neurological exams checking my sensory abilities, a tilt table test, extensive blood panels to check for toxins as well as autoimmune diseases that frequently cause nerve damage, etc. I've also had a brain MRI and a Doppler vascular study to rule out some other problems. All negative!

 

[Boston Redsox]

Hi I have seen 6 neurologists and cannot get a diagnosis. I have all the symptoms of Small Fibre Neuropathy the non length dependent. Mine started in the back 3 years ago.Now it's all over me. I have had two skin biopsys all clear MRI scans all clear. Numerous blood tests all clear.
Just wondered where you are with it now and how you are doing ?

I am in the same boat as you ...I know your looking for a answer so wasn't I ...did the same shit you did ...YOU NEED TO GIVE UP and stop looking for a diagnosis be happy you didn't get one ....Move on your test are clean ....if you need more proof see a tms dr send him or her your results get his stamp and move on ....Are you on any meds

 

[SuzyT]

I felt this burning sensation in my lower legs. I described it as a sunburn on the inside of my skin. It was mostly in my legs. They did the punch biopsy in my legs because that is where my symptoms were. I tended to feel better when I stood up. When I laid down on my side I would get a weird tingly sensation. It never made sense. I don't have it anymore. I wear socks and for the most part just have mild sensation in my feet. I think it is because I still think about it too much. I have difficulty with running because of fear. I'm getting better, but it is one of the last demons for me to tackle. I'm going to try a good go of it in the Spring. I was also crazy stressed out when all of this was going on.

I found this one mind-body exercise very enlightening. It is called a body scan. Essentially, you listen to the various parts throughout your entire body. What I found was that when I focused on a specific part of my body, I could feel it more intensely. For example, I would think about my face and notice all of this sensation going on that I normally ignore and don't give any attention to. When a part of us is injured we focus and give all this attention to a body party, which normally wouldn't give us any sensation. Similar to the story of the boy bitten by the snake and now feels pain when a blade of grass passes over his leg.

I would tend to agree with Walt that I think someone the standing is part of some conditioned response. I know for me I had this image of the disc in my back pressing on a nerve when I laid down and voila I have weird nerve stuff in my leg.

Neuropathy doesn't make sense to me. Dr.s can't explain it and they just shrug their shoulders. The more I've learned about TMS the more I think neuropathies are just another type of TMS that Dr.s don't understand. I too am not diabet.

Hi all, I have just started looking further into this site and came across this discussion about SFN and Peripheral Neuropathy. All the symptoms that have been mentioned, I have had for the last 3 years. Started mid 2020 because I started to get tired legs and also when walking barefoot it felt like I had sand under my feet (this feeling has been there for many years, but ignored it). I went to the Dr about my tired legs and the feet thing. After many blood tests which ruled out diabetes and other things associated with nerve issues, I went to 2 neurologists, both came up with maybe mild Peripheral Neuropathy. This was in 2020. Then sometime later maybe few weeks/months I started to get tingling in my lower legs and also in my face. So I went to another neuro who assured me that my so called PN was not there, but sent me for an EMG test so that I would be satisfied with her opinion. The EMG came back negative and so the only thing that was put down to my tingling feeling was that it is SFN. After that and for the past 2 years, I have been ignoring it. Recently though, my tiredness in my legs seems to have got worse and the tingling has got worse. Needless to say that I still walk up to 5kms per day, but my fear has made me believe that I will lose my mobility despite what the Neuro said. I have in the past adopted all the TMS principles and have got rid of a lot of symptoms such as back pain, IBS. I have read Alan Gordons book, Sarno's books (back in 2013) and joined Curable. I have also joined Dan Buglio's weekly group sessions. (just last week). I have also watched many of Dan Buglio's videos. I am determined that this tingling stuff and weak legs is TMS. The weak legs comes and goes so easier to address with the TMS work. The tingling and feet issue is constant. When I am distracted it doesn't bother me, but when I focus on it, it is there. I would be happy to discuss further with anyone who has done any TMS work on these kinds of symptoms.

 

[SuzyT]

Bman - I sense you have unacknowledged doubt when you say...

"but I cannot accept a lifetime of pain"

You're subconsciously worried you will be dealing with this your whole life. Try your best not to think ahead. Imagine yourself having a "good day" each and every morning. Through repetition and belief your mind will follow; eventually change will take hold. Try your best not to measure your progress as that will bring the mind's focus back to it.

I have just seen you post and now it is 2024. I wonder how you are going and how are your symptoms. I put a post in this thread also describing my symptoms

Suzy

 

[SuzyT]

I am in the same boat as you ...I know your looking for a answer so wasn't I ...did the same shit you did ...YOU NEED TO GIVE UP and stop looking for a diagnosis be happy you didn't get one ....Move on your test are clean ....if you need more proof see a tms dr send him or her your results get his stamp and move on ....Are you on any meds

I put a post in this thread about my journey with SFN and wondered how you were going after 3 years.
Suzy

 

[Painter]

Hello,
I read these posts about SFN with interest as it so closely aligns with my symptoms of tingling, burning pain mostly in my lower legs and feet.
I did a video appt with Dr Shubiner who confirmed that I had MBS based on my MRI results( stenosis, bulging discs etc but I was 68 years old) and a normal physical exam by a neurologist who attributed my symptoms to the structural back issues. Dr S assured me several times that my back MRI was quite normal for my age and not the cause of my symptoms. I did later read about SFN and started worrying about that....until I read page 70 in Dr Shubiner's book- Unlearn Your Pain in which he clearly states that a diagnosis of SFN means that your nerves are working properly and that you actually have a MINDBODY condition.

 

[ficus]

Hi I have posted several times in the past. Does anyone have Small fiber Neuropathy?? I have been in constant pain for 5 years now. Had every test possible as everyone else has. All the pain started 5 years ago in my upper abdominal. & spread throughout my entire body. I had nerve conduction Spinal Tap & skin Biopsy MRI catscans bone scans & more. Last stop was a neurologist I had to request my medical reports to be sent to my primary DR He said nerve conduction was positive for nerve damage & the skin biopsy confirmed wide spread small fiber Neuropathy. I never heard back from the Neuroligst. The thing i dont get about it why would I have no pain when I lye down. As soon as i stand the muscle & burning pain gets worse & worse. I see a Psychologist & a Psychiatrist All the Dr that i have seen said No cure, Gabapentin Tramadol Anti depressions Any in please let Me know IS Small Fiber Neuropatathy TMS?? I am not a diabetic I do have Major Depression & PTSD. I have read Many TMS Books & Yes I have been through the SEP program Please any advice

hi winter haven - how are you now years on - did tms work work ? i ahve the same and it is so so confronting with so many mixed messages scrambled around inside of you and not know what to do or wha twill help

 

[ficus]

Hello,
I read these posts about SFN with interest as it so closely aligns with my symptoms of tingling, burning pain mostly in my lower legs and feet.
I did a video appt with Dr Shubiner who confirmed that I had MBS based on my MRI results( stenosis, bulging discs etc but I was 68 years old) and a normal physical exam by a neurologist who attributed my symptoms to the structural back issues. Dr S assured me several times that my back MRI was quite normal for my age and not the cause of my symptoms. I did later read about SFN and started worrying about that....until I read page 70 in Dr Shubiner's book- Unlearn Your Pain in which he clearly states that a diagnosis of SFN means that your nerves are working properly and that you actually have a MINDBODY condition.

that is great to hear about what he writes in his book with such conviction. how are you now ?

 

[ficus]

While I didn't say a lifetime of pain - you are very perceptive. I definitely have doubts and I acknowledge them - they are clearly an obstacle to recovery. I have been able to see improvement in all my other symptoms but the neuropathy has been difficult. Almost all of my times without pain are when I am off of my feet. It is very rare that I don't have pain when on my feet. Alan Gordon says to see the pain as just "sensations" which I can do to a certain extent. With most of my other symptoms I can take a tylenol and get some symptomatic relief which helps me to work on the TMS, but I haven't found symptomatic relief for the neuropathy other than getting off of my feet. Most of us have highly analytical minds and we probably do too much research. Because I've had neuropathy for 15 years I have had too much time to look at conventional medicine's approach which is very negative and offers little or no hope if you don't have a treatable cause. These messages bounce around in my brain and encourage my unconscious mind to continue the pain. As a result it makes the process harder. You are absolutely right, I need to take it day by day and accept that some days may be worse (or better) than others. Thanks for your thoughts.

BMAN - how are you now? I would love to hear an update for hope if there is one for SFN