Small Fiber Neuropathy

Greetings everyone!
I wanted to reach out to see if any other people have experienced the same things as me.

I had weight loss surgery in 2018. Took bariatric multivitamins. Ended up having stroke-like symptoms and body buzzing all over/migranes. A few months later, I developed burning in my right foot. 10/10 pain. Only soaking it in a hot bath would bring relief. Went to the ER multiple times, 6 different neurologists, had full MRI’s of the brain, cervical, lumbar, upright MRIs, podiatrist appointments, nerve blocks, injections, and 2 functional medicine docs and the only thing they find was “small fiber neuropathy” by a punch biopsy due to elevated Vitamin B6 levels caused by excess multivitamin intake. They said I’m MTHFR positive so I don’t process synthetic forms of B6, which is why it built up in my system and damaged my nerves.

I should mention the burning in my right foot started when we lost my mother in law in a car wreck at Christmas. Well, over the course of a year, the burning in my right foot drove me crazy. I was constantly researching. Constantly on the toilet with IBS and stress, and seeing all sorts of vein specialists, doctors, etc.

One year later, around the anniversary of losing my mother in law, the pain in my right foot jumped to my left foot, crept up both my legs, into my thighs, and engulfed my entire body from head to toe in a “sunburn” sensation. From that point on, I was FREAKED OUT and majorly depressed. I was certain the small fiber neuropathy had spread. Even though I had no cause other than the B6 overdose, which I promptly had corrected years earlier and had been getting routine monthly labs to make sure all my numbers were in range.

i was paralyzed by the fear. I still am. I have been trying to get it through my head that Dr. Schubiner said that small fiber neuropathy is a mind body condition.
I have evidence. I have situations where the pain comes and goes, waxes and wanes, and gets worse with stress. There are also times when it’s gone completely (although that’s rare).

now the burning in my right foot has returned. And you guessed it.. I am back on the phone making appointments with neurology clinics and podiatrists because they must have missed something, or it’s just going to get worse.
I have been doing the curable groups, ACA literature for my ACE (I have 8/10 of the ACE questionnaires) and I have been seeking to journal and write to try to get rid of repressed emotions.

I feel the biggest roadblock is the logical brain inside of me. It’s telling me that the sunburn feeling, the burning, prickling, cold, hot, tingling sensations in my skin are SFN.. but even if that were true, Schubiner said it’s all TMS.

Are there any of you that have suffered with these similar symptoms or diagnosis that have healed completely? Any encouragement? I’m in a very bad place mentally, even though I know I’m making small progress. I just need support. I don’t really have anybody that can logically put my mind at ease with small fiber neuropathy.
Here is an email from Dr. Howard Schubiner that he sent me. It has been encouraging.. however I wish I knew how many people had my symptoms that fully recovered. And yes, I know that my false expectation of “fully recovering” is not good, and I know I’m measuring success by my pain levels, and I know that’s not good either. It’s just soooooo hard.

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Hello Christopher.



I’m so sorry for your struggles!! But you can recover!! High B6 levels didn't damage your nerves in any irreversible way; and your levels are now normal, so that is not an issue. Any issues with the nerves was temporary and gone a long time ago.


SFN is actually a mind-body condition. We have successfully treated many people with this using a mind-body approach. Many people even have positive biopsies for SFN who have no symptoms at all. You will get better!!


Stop worrying about B6 and your diet. Stop worrying about these sensations; they are harmless and mean nothing. “

Also, I have a deep fear-association with my symptoms. If my legs start burning bad.. or my foot flares up.. I immediately get depressed, lump in my throat, chest hurting from stress, IBS, and I start getting stuck in a “problem solving” loop. I have also stopped googling..

Any advice, encouragement, or suggestions are welcome!

 

Dr. Schubiner has worthier with thousands of mind body patients. He is currently the leading authority! The fact you feel what he has to say may not be 100% trustworthy is, in itself evidence. Our brains truly find this hard to believe!
I think most people find it difficult to overcome the doubt.
Take a step back. What do the functional medicine Doctors have to gain by offering you a diagnoses for which most treatments, and their services are not covered by most insurance? How expensive are their ongoing appointments and medications/supplements they often require you purchase through them?
How much money does the medical system charge for tests, treatments and appointments?
What did Dr. Schubiner charge for a single visit in which he did not suggest medications, treatments or follow up visits?
Which of all these professionals have offered you true hope, a clear path and told you that you WILL get better!
You are just stuck.
Here is an excellent talk by The Pain PT which I found helpful. Know that the anxiety cycle you are in can be broken. You need to stop thinking when these sensations happen and stop pushing them away. That is a clear sign your brain fears any discomfort: physical, emotional.. and those are all simply thoughts. Your mind just thinks these things are true, but they are not.
Just for a second sit, and think about your favorite food. Close your eyes. Imagine tasting that food. It’s in your mouth and delicious! Savor it.. now open your eyes. No, you couldn’t really taste it.. but you could imagine it because you were thinking it. That is exactly what your brain is doing with danger signals.
You are safe. You probably have a roof over your head, a warm bed and food to eat. You clearly have caring people like Dr. Schubiner and your Curable group. You are safe. 10,0000 times a day repeat it while you sense the physical and mental discomfort. Just be with it. Take a breath, and let the uncomfortableness pass. Notice subtle shifts of the mind after doing this for a few weeks.
https://www.thepainpt.com/news/face-your-fears-to-move-forward/ (Face Your Fears To Move Forward - The Pain PT)

 

I had physical damage to fibers of my right ulnar nerve at the elbow. My neurologist said it would spontaneously heal in about 16 months. He was right. I healed fully.

Over the course of healing, I came across an article about nerve injury and recovery. Here is what I learned. There are six degrees of nerve injury. With the first three degrees, healing is spontaneous. With the last three, surgery is required before healing can occur. With the first degree, healing occurs within days to three months. With the second degree, regeneration of the nerve spontaneously occurs at the rate of one inch a month starting from the cell body, and recovery is full. That was my situation. The distance from the cell body to my elbow is about 16 inches, so it took sixteen months for me to heal. With the third degree, spontaneous regeneration of the nerve occurs at the rate of one inch a month from the cell body, but recovery is partial rather than full. If you had fourth, fifth, or sixth degree damage, wouldn’t one of your neurologists have found it and recommended surgery? Dr. Schubiner wrote: "High B6 levels didn't damage your nerves in any irreversible way." I think he was telling you that high B6 levels don’t cause third, fourth, fifth, or sixth degree damage, and if you had first or second degree damage, that would have spontaneously healed by now.

Finally, the fact that your symptoms jump around and engulf your whole body is compelling evidence that your symptoms are psychophysiologic (to use Schubiner’s terminology). Cactusflower is right when she says Schubiner is the current leading authority on mind-body disorders. You need to accept what he said to you.

 

Hi @Rasor,
Healing from TMS is emotional work, not physical or medical. The cure is working on your emotional issues. That’s what this website is about. You scored 8/10 on ACE. Whew! That’s hefty. That’s a lot of abuse that needs to be processed. And it’s probably impossible to address on your own. I scored 6/10 and I’m seriously a poster child for child abuse. I’ve had more than 10 years of therapy, 3 of which after I discovered what TMS is. I’m still working on it and I haven’t healed yet for my current round of symptoms, which includes neuropathy on half my body and my arms and hands. But I believe I will! I have before.

All this running around and panicking and not believing the doctor that I call “Sarno 2,” Dr. Schubiner, is just you trying to avoid this therapy. There’s probably no chance you will heal without therapy. (I’m basing this on what Dr. Sarno says about people with child abuse issues.) It will be very hard, but not impossible to live through the therapy, but you can do it. The only way out is through!

Have you read Healing Back Pain by John Sarno yet? It’s really the best place to start. And even though you don’t have back pain, it still 100% applies to you. God bless!!! Hope you find healing, brother.

 

Yesterday I watched the interview Dr. Tovah did with Dr. Schecter. In it, she mentions that Dr. Hanscom (another TMS sufferer) has neuropathy in his feet if he doesn’t journal daily. Your personality might not require quite that much consistent, ongoing need, but there ya go. When he deals with his emotions he is fine!