Long standing “small fiber neuropathy”

[Amo8794]

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.

 

[BloodMoon]

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 surmise that the neurologist is telling you that they believe you have 'functional disorder' aka 'conversion disorder', see https://www.mayoclinic.org/diseases-conditions/conversion-disorder/symptoms-causes/syc-20355197 (Neurological symptoms are real and improvement is possible-Functional neurologic disorder/conversion disorder - Symptoms & causes - Mayo Clinic) which is/are (arguably) TMS or at least akin to TMS, i.e. a mind/body issue.

I don't believe that fellow forum member miffybunny was diagnosed with functional disorder/conversion disorder (I believe she was given the label/ 'dustbin diagnosis' of complex regional pain syndrome) but she had all manner of symptoms to include burning feet and recovered. My suggestion would be to watch her video and read the postings on the following thread, especially the posting where I list what miffybunny advised she did that enabled her to recover: https://www.tmswiki.org/forum/threads/unmissable-interview-with-rita-aka-miffybunny-regarding-tms-and-her-recovery-from-crps.28417/ (Unmissable interview with Rita aka miffybunny regarding TMS and her recovery from CRPS)

 

[Cactusflower]

I'm sorry for your pain.
Please know that I had MANY of your symptoms, and still occasionally get some.
I had temperature regulation problems for at least 15 years (or longer) but that seems to have gone. I am still become uncomfortable when the temperature is not "perfect" but that will pass in time, it's simply a disregulated nervous system.
I had shocking pain in my back, with tingles, twinkles and the creepy crawlies. This is from tension which holds your body tight and from unconsciously not moving in your full range of motion - essentially you get stuck. This takes time, but it will pass. Sometimes the symptoms return to a degree (creepy crawlies) but I now know they are just symptoms and can't hurt me. They are not a sign that anything physically is "wrong".
I go through periods of urinary frequency and other symptoms "down there" but they are also just tension and I am am now very aware of it, and don't stress out about them at all. I have also learned that getting frustrated with them will keep them hanging around for longer. This is a typical symptom of anxiety.
I still get some twitching, and involuntary muscle sensations (especially when I lay down) as my nervous system is letting off steam. I also still get a lot of charley horses when I am laying down. I can now laugh at them because why on earth would someone get that kind of muscle cramping when doing nothing. It makes no sense.
I also had extreme panic, suicidal thoughts, depression, anxiety and a host of other symptoms (they are just symptoms...just like the physical ones) and had all sorts of neurological testing, doctors, MRI's etc because it totally presented itself as a physical issue. Nobody could find anything wrong however nobody even suggested to me it was psychosomatic for many years (and even then they would never go that far...).

I think you are absolutely in the right place because your Dr. has ruled out anything physical or "structural".


Feel free to explore more of this website at - https://www.tmswiki.org/ there is so much information here!

This website is inspired by the ideas of Dr. John E Sarno who’s pioneering work in the field of TMS has led to many scientific discoveries about the human chronic pain experience. We suggest you begin to learn more about TMS by reading one of his books. Here is a short biography and bibliography of his life work. https://www.tmswiki.org/ppd/John_E._Sarno,_MD (John E. Sarno, MD)

Not sure if your chronic pain is mind body related? This free, short quiz from the PPD Association (PPD is another term for TMS) can help you gain a clearer vision of your chronic pain. https://ppdassociation.org/ppd-self-questionnaire (Self Quiz — Psychophysiologic Disorders Association) this can really help you if you are confused or doubtful about your situation being mind/body related or TMS.

The ACE’s test is a short questionnaire to help you recognize how your early life many be affecting your current life and stress. Take this test by imaging yourself as being a child. How did the actions of others in your family effect you as a child? https://www.tmswiki.org/forum/attachments/aces-quiz-pdf.1558/

Most commonly, this type of symptom is attributed to stress - both external stressors but more importantly the internal stressors you have generated through your life (and most likely where totally unaware of it) are just expressing themselves through your physical body. This is what your Dr. means by psychosomatic.

We look forward to hearing how you identified with Dr. Sarno’s book and the quizzes.

We’re here to provide support and answer your questions!

 

[Duggit]

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.

The fact that cognitive behavioral therapy did not help you is hardly surprising. Most of Dr. Sarno’s TMS patients did not need psychotherapy to recover. For those who did, he regarded cognitive behavioral therapy as worthless because it did not focus appropriately on repressed emotions.

 

[Ellen]

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.

I am so sorry you have suffered with pain for so long. Those of us on this Forum can fully understand this.

TMS is psychological, but the pain and other symptoms are very real, and some of the worst pain that can be experienced. By calling it psychological, this means that your emotions and thinking are causing your brain to create symptoms (real symptoms, not imagined symptoms). As @Duggit states above, cognitive behavioral therapy has been shown to not work on TMS. Many of us have recovered fully using a self-help approach and @Cactusflower and @BloodMoon have given you good resources to get started on that path. If you feel you need a professional to guide you, there are therapies that have been demonstrated to work well for TMS, like Pain Reprocessing Therapy, Emotional Awareness and Expression Therapy, and ISTDP (Intensive Short Term Dynamic Psychotherapy). I would seek out someone who specializes in treating TMS using one of these therapies. We can give you resources to help you find someone, but I recommend trying a self-help approach first. No one can change your thinking and the way you process emotions but you.

It is possible to recover from your symptoms. It requires commitment and diligence, and make take a little while, but you can recover. We are all here to support you on your journey.

 

[Amo8794]

@BloodMoon @Cactusflower @Duggit @Ellen
Thank you all for the replies, information and most of all the kind words. I appreciate you all taking time out of your day to respond. I will look into all of this! It’s looking like I’ve got a lot of work ahead of me. But if recovery is at the end of that journey I’m more than willing!

 

[Diana-M]

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.

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!

 

[gunttta]

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!

I know this is an old post, but did you ever get better with nerve pain? I have severe burning in legs that’s started after real chronic pain due to endometriosis and surgery….

 

[Diana-M]

Hi,
Nope, not yet. I started with 16 symptoms and after a year I’m down to only 4, but nerve pain is one of them. It takes a lot of work and time. You can’t give up.

 

[gunttta]

Hi,
Nope, not yet. I started with 16 symptoms and after a year I’m down to only 4, but nerve pain is one of them. It takes a lot of work and time. You can’t give up.

I’m happy about your success. How does your nerve pain feel like and where is it located? I’m pretty sure my burning legs are due to nerve damage so small it can’t be tested. I want to be a believer of TMS though!

 

[Diana-M]

I’m happy about your success. How does your nerve pain feel like and where is it located? I’m pretty sure my burning legs are due to nerve damage so small it can’t be tested. I want to be a believer of TMS though!

My whole legs and my hands. You can start doing work to heal without believing in TMS fully. Nobody believes fully at first. Just pick something and start. I recommend the Structured Educational Program here on the site. It’s a lot to learn and a big process. Many many people with TMS have neuropathy. It’s super common.

 

[gunttta]

My whole legs and my hands. You can start doing work to heal without believing in TMS fully. Nobody believes fully at first. Just pick something and start. I recommend the Structured Educational Program here on the site. It’s a lot to learn and a big process. Many many people with TMS have neuropathy. It’s super common.

Thank you. That’s nice to know! I thought it’s mostly back and muscular pain not nerve pain. I have developed hate for my legs that I want to overcome. Can you wear clothes without pain and can you use a blanket?

 

[Diana-M]

As my nerves have started healing, I’m less bothered by things touching my skin. You have GOT to read Hope and Help for Your Nerves, by Claire Weekes. Super short book. I read it about 5 times, then read some more every single day for a year. It will calm you down a lot and soothe your fears. (To be honest, I could live with neuropathy the rest of my life compared to my other things wrong. I don’t even think about neuropathy anymore.) Try not to worry! And definitely don’t hate your legs. It’s not their fault. You just have too much adrenaline and you need to turn it off.

here’s the audiobook for free:

 

[gunttta]

As my nerves have started healing, I’m less bothered by things touching my skin. You have GOT to read Hope and Help for Your Nerves, by Claire Weekes. Super short book. I read it about 5 times, then read some more every single day for a year. It will calm you down a lot and soothe your fears. (To be honest, I could live with neuropathy the rest of my life compared to my other things wrong. I don’t even think about neuropathy anymore.) Try not to worry! And definitely don’t hate your legs. It’s not their fault. You just have too much adrenaline and you need to turn it off.

here’s the audiobook for free:

Thank you! I’m listening to this video right now.

I think part of the issue I’m having is that I haven’t “met” anyone who has my issue caused by stress? I’ve read so many forums… and yet no one who has been cured from neuropathy

 

[JanAtheCPA]

I think part of the issue I’m having is that I haven’t “met” anyone who has my issue caused by stress? I’ve read so many forums… and yet no one who has been cured from neuropathy

Plenty of people here have recovered from many different variations of nerve symptoms, many of which accompany a wide variety of all kinds of other symptoms.

The details are unimportant, because our fearful minds are capable of creating unique symptoms just to fool us into thinking we are "special" and that we are the exception that can't be helped. This is a false belief, so it is really important that you reject it!

You will not help yourself if you let your fearful brain focus on small details and differences between you and others. The good news is that these are meaningless! Take our assurances at face value that if the traditional medical industry can't help you, then you have nothing to lose by doing the work and gaining the skills and knowledge that we practice here. It can be done for free or almost free. If you do the work, we're here to support that!

 

[gunttta]

Plenty of people here have recovered from many different variations of nerve symptoms, many of which accompany a wide variety of all kinds of other symptoms.

The details are unimportant, because our fearful minds are capable of creating unique symptoms just to fool us into thinking we are "special" and that we are the exception that can't be helped. This is a false belief, so it is really important that you reject it!

You will not help yourself if you let your fearful brain focus on small details and differences between you and others. The good news is that these are meaningless! Take our assurances at face value that if the traditional medical industry can't help you, then you have nothing to lose by doing the work and gaining the skills and knowledge that we practice here. It can be done for free or almost free. If you do the work, we're here to support that!

Thank you. I very much appreciate you devoted your time to write this response. I’ve been hurt deeply by chronic pelvic pain which lasted 24/7 for 8 months. I’m ready to work on my emotions and I just joined the TMS daily program. I’ve also tried meditation and breath work and I find it very helpful to tone my emotions down own a bit. It’s still a long way ahead of me. I really want to recover 100%. Do you have any tips? You advice on rejecting the thought of having unique symptoms is very valuable. Sending you much love.

 

[JanAtheCPA]

Do you have any tips?

1. Do the work. I have a whole post with tips for doing the SEP which is linked in the introductory pages.

2. Read Success Stories. Don't ask the writers for information, just accept what they are saying about their experiences and trust that you will find your own experience.

 

[gunttta]

1. Do the work. I have a whole post with tips for doing the SEP which is linked in the introductory pages.

2. Read Success Stories. Don't ask the writers for information, just accept what they are saying about their experiences and trust that you will find your own experience.

Thank you. My journey shall begin. I’m just wondering if allodynia (sensitive skin) to wearing clothes and blankets even can be a part of TMS… however subconsciously burning skin associates with stress. I want to be free! I wish we could all be free front this!

 

[Cactusflower]

Thank you. My journey shall begin. I’m just wondering if allodynia (sensitive skin) to wearing clothes and blankets even can be a part of TMS… however subconsciously burning skin associates with stress. I want to be free! I wish we could all be free front this!

Sensory sensitivities of all types are highly associated with TMS

 

[Diana-M]

I’m just wondering if allodynia (sensitive skin) to wearing clothes and blankets even can be a part of TMS…

Yes! It’s absolutely TMS. It’s also a symptom of a hyper-aroused nervous system. (TMS is anxiety and anxiety is TMS.) Picture your nerves being raw. They feel everything to a greater degree. It’s not a crisis. You just have the volume turned up on your nerves. Knowing is half the battle. But it also takes time. AND it also takes changing how you think. You have to learn techniques for this. Some pressure is internal (self criticism, perfectionism, goodism). Some is external, like the media, obsessing on the future, worrying about things that haven’t happened yet, spending time with people who stress you out. Also— just being in a habit of go-go-go. Never having a moment of peace. Always thinking scary things. It takes an effort to work on all this. So it won’t go away fast. And it goes away so slowly you barely notice it. 16 months ago I had a buzzing inside my limbs and chest. Just from sheer nerves. Now it’s gone. I don’t remember when it left. It left gradually. If I get really nervous, it can come back. But less than before. The same will happen with your sensitivity to physical sensations. I can’t emphasize enough how important Claire Weekes is. Read her books over and over. She is a gold mine.