Long standing “small fiber neuropathy”

[ficus]

Hi all, I’m new here and a long time lurker. I have a story to tell and i am here for advice. This will be a long one, and I hope someone takes the time to read it.
I’m a 29 year old male. Back in 2020 I was in my last year of my enlistment in the marine corps. In December of that year I caught Covid 19 and I had no idea how much my life would change. 2 days in I woke up with terrible chest pain. Long story short I dealt with that for a year. Had every work up done I could have. No cause for the pain and no damage had been done. I tried to walk away knowing it would get better. Then it happened. I woke up on a sunny day in May. My life was about to change. I had an intense aching in my legs. They just felt heavy and sluggish. I needed to urinate every 15 mins. Something just felt off. This persisted for a week and then the tingling started. It was my left shin. I described it as tv static in my leg. I saw my gp he told me not to worry. I didn’t. But the aching in my legs got worse. The buzz in my shin became constant. Then the burning started. My feet were starting to burn to no end. Now all this time later…I’m miserable. I’m in pain constantly my feet burn all the time. I’m afraid to be on them. My legs have no energy and they ache terribly. I have heart palpitations. My right hand turns icy cold even in room temperature. My muscles twitch. I have shocking/crawling sensations down my back. What I’m trying to say is I have so many symptoms indicating a neurological condition. Most likely small fiber neuropathy. But every neurologist says no. In this time I have had QSART testing done, multiple mris, (even a Prenuvo full body mri in the last month) blood work for all known causes, ct scans, 2 EMG studies. And even the “gold standard skin punch biopsy” nothing is indicating I even have a neuropathy. My latest visit with a new neurologist…he listens to my history of symptoms, does a bedside neurological exam and does not hesitate to tell me this is all psychological. I can’t wrap my head around it. I feel so cheated. I have suffered for years now with little quality of life. And it’s in my head?!? It just can’t be.

So that’s my story. If this being psychosomatic is the cause. Where do I even start with trying to overcome this. I have done cognitive behavioral therapy. 40 days inpatient as the pain I’m in has made me suicidal. It did not help me one bit. I don’t even know what I’m asking for. I’m just so confused by this all.

How are you going now with these symptoms ?? I have the same. no answers and feel so terrible with them - but wanted to see if you have had success ?

 

[ficus]

Hi @Amo8794
The description of your symptoms is dead on for mine. Plus I have more. They compounded after I had COVID this past Dec. As you read true stories on this wiki of others, you will see that it is totally possible for your brain to create all this. It seems inconceivable at first, but it’s true.

The good new is, you can heal. That is verified by those who have healed and are sharing their wisdom on this forum. The bad news is. It will take time and a huge amount of effort. But what choice do you have?

The best way to describe what happened to you is a nervous breakdown of your body. The stress caught up with you. And something else: your hidden reservoir of rage finally overflowed.

TMS seems to come out of nowhere, but actually, it brewed a long time then showed up.

Your first mission on your quest to heal is to gain knowledge. Dr. John Sarno is the originator of this mind-body concept, TMS. The easiest book to read by him is Healing Back Pain. Replace the words “back pain” in the book with all your symptoms. It’s all caused by the same thing and healed the same way.

As far as I’ve studied it out, there are 4 big components to healing:

1. Digging into your mental/emotional health (you have to be brave enough to do this)
2. Learning how to break the fear/pain cycle (calming your nerves and feeling safe again)
3. Looking into current stressors and tackling them, including personality traits that contribute to getting TMS
4. Having the grit to not quit no matter how hard it gets

What helped me a lot was to get psychotherapy (the kind I use helps with TMS and is called Internal Family Systems.) Also:
I started journaling a lot about what I’m angry about.
I started learning what’s perpetuating my anger in my life (unbeknownst to me before joining this wiki).
I started reading books and listening to podcasts mentioned on the wiki.
I Asked questions as I went along and wiki members brought me insight.
I tried to apply what I learned. Especially when I didn’t get it at first.
I spent hours on this wiki studying topics, doing searches and reading posts. And writing posts. It has been cathartic to do the writing too.

Recently, I started reading a book by Alan Gordon called The Way Out. It is very helpful! I’m getting results from it! (I will share more on this shortly)

I also like a daily YouTube video by Dan Buglio (www.painfreeyou). He helps to calm you and teach you.

I have had TMS on and off my whole life, but nothing like the last four years. The symptoms are so widespread and as you describe. It’s hard to describe all of it!

I’ve been here since March. I am making headway. Very slowly. Just recently, my efforts are starting to show some results.

Don’t get discouraged that this journey seems hard. Probably being a marine will help you! Just dig in. You can do it. You are already absorbed in your pain. Why not make your efforts worthwhile? You will learn and change and grow and ultimately be wiser and healed. All of this: I’m learning from the healed ones, who I call “gurus,” on this wiki. Read success stories! Fight!

I’m pulling for you!

Hello - how are you going with the nerve pains and tingles since starting TMS work ? in a bad place at the moment with my feet feeling on fire and just at a loss - so been lurking on here

 

[LJD75]

Hi, I hear you. I have had bilateral heel and sacral nerve pain for 18 months. Its soul destroying. BUT I have had periods of the symptoms not being so dominant in my thoughts. I am im another sttessful life event so symptoms are unbearable especially in the evenings. It was interesting when i was on holiday i had no feet pain for 4 evenings..... Unheard of....

 

[ficus]

Hi, I hear you. I have had bilateral heel and sacral nerve pain for 18 months. Its soul destroying. BUT I have had periods of the symptoms not being so dominant in my thoughts. I am im another sttessful life event so symptoms are unbearable especially in the evenings. It was interesting when i was on holiday i had no feet pain for 4 evenings..... Unheard of....

that is HUGE evidence it is TMS right - well done - keep going

 

[LJD75]

Its breakthroughs like these that keep me going. The daily rage on the page did help but i took it for granted the positive impact it had until i stopped doing it!

 

[ficus]

Its breakthroughs like these that keep me going. The daily rage on the page did help but i took it for granted the positive impact it had until i stopped doing it!

I found myself looping and feeling worse with it - i tried the StevoO method of just ignoreing it and going about my day as i would like to - unless i have misinterpreted his work - i wanted the rage on the page to reduce the neuroapthy but maybe i need to try again

 

[LJD75]

I think both have their place. I didn't rely on the rage on the page to help with the pain.... More of a cathartic way of dealing with shit i couldn't say out loud. I do just get on with my day, still continue with crossfit etc....