Hi everyone,

So let me start off by saying I do have health anxiety.

For the past few months I've been having peripheral neuropathy symptoms in my hands and feet - pins and needles, sharp stabbing pains, strange crawling sensations on the skin, and (probably perceived) weakness. The symptoms come and go at random, but always seem to come on symmetrically, ie. both soles of both feet would suddenly feel crawling sensations at the same time.

The symptoms also seem to be slowly getting worse. Week 1 was just pins and needles in only the hands; a few weeks later the stabbing pains started in the hands; a few weeks after that the toes felt these symptoms; in another few weeks the entire feet get these symptoms; the strange crawling sensations then appeared in the hands and feet. Burning sensations is the latest new feeling I get.

I just had a nerve conduction study and an EMG, both of which came back normal, and the doctor tells me this is all in my head, that it's all anxiety induced. This is possible because like I said, I do have health anxiety. Still, my symptoms seem like a textbook case of length-dependent PN, and I just can't get it out of my mind that I have PN and I'm totally freaking out about it - a lot of information online (including this board) paints a very grim, painful, and debilitating future for sufferers of PN.

But the doctor's convinced I'm physically healthy. I live in a fairly rural area, and seeing a neurologist is difficult. Even if I get a referral to another, it'd be months away, and I could really use some advice right now to calm myself down because I am not functioning well at all due to the stress these symptoms are causing.

I know you're all more experts on PN than anxiety, but does anyone have any insights into this situation? Could this really be all in my head? Or do my physical symptoms strongly suggest PN despite the normal nerve tests?

Dear Will.,

I think you last sentence best reflects the situation. Yours is a well-reasoned and intelligent letter, and your symptoms sound like sensory PN to me. (And I have far more years of experience with anxiety than I do with PN!)

My first neurologist was so intent on disproving my hypothesis of sensory and autonomic neuropathy, he dismissed my positive skin biopsies as "artifacts." He also thought I was merely "anxious." (A diagnosis I was hoping for. Least serious.). I went to another neurologist. It turns out I have sensory neuropathy and severe autonomic neuropathy (dysautonomia). You don't appear to have dysautonomic symptoms, which is great...

You have to trust yourself.....you know you have pretty well-defined symptoms and you've done research. Yet, if you probe further, you may learn you may have small fiber neuropathy (NFS), which is not usually picked up by an EMG or nerve conduction studies. The definitive test is a skin-punch biopsy. I urge you to get it done soon, for peace of mind and because you may have a treatable underlying condition.

I understand your constraints about doctors, but I'm suggesting you move on. Because it is hard for me to travel (labile blood pressure), I do a lot of doctor research on the phone. Ask to speak with someone who has medical knowledge before you make an appointment. You might badger your existing Neuro to do the biopsies if this is more convenient....but I think you could use a sharper neurologist who knows appropriate testing, and who is more empathetic and less dismissive.

My sensory SFN is a drag and worsening, but it is not terrible. I control the pain with a low dose of nortriptyline (old school tricyclic antidepressant) and marijuana at night.

This forum is very helpful and I encourage you to keep researching.....we have to be our own doctors and advocates these days.

Best of luck...

Sylvie

Many here have learned some tricks to help those with anxiety issues. First let me say that I do not get "freaked" when I go to the Dr. but I definitely put my foot WAY up in my mouth when I first started. If your Dr. has already written you off, you might have to find another and build an outline or script to carry with you to the new Dr. If I stick with the outline, I get the important questions asked and hopefully answered. Several posters have been funnelled into the "all in your head" bunch and it dowsn't take a Dr. long to categorize. If you read here, you can learn that SFN needs a skin punch biopsy to be properly diagnosed and even then symptoms can be present with a negative diagnosis. So, there aren't many hard and fast rules, only generalities. Your symptoms sound pretty in line with Neuropathy but in the same breath I don't know the depth and breadth of your anxiety. As for coping until you find out more, take heart that lifestyle makes a difference, no miracles from the Drs. The horizon is not as black as you paint it. Improvement is slow but it is there. A combination of good nutrition, geed sleep, exercize to tolerance and the passage of time are the workhorses. I would ask what your b-12 number is? Needs to be from 400 to around 1000. This was one of the things that helped me. Also a Magnesium Lotion helped me to use bedsheets again as the tops of my feet were burning for a while. Also, expect symptoms to change over time, mine have almost completely changed over 3 yrs time. I know it's stupid to ask you not to worry but I will ask it anyway. Good Luck, Ken in Texas.

No expert here as I'm still trying to get to bottom of mine but what you described is pretty much exactly what i experienced, hands first then feet , few months later my lips but extremely mild on the lips, dr's are looking at me like I'm a nut job, i did see a neurologist and he has said it might be SFN but also anxiety can also cause this which i also suffer from a lot , he's asked me to come back in a year if i still have it! hoping he will try a skin biopsy this time as others have noted, do you drink by the way , you don't have to answer that but its something that may have caused mine .... good luck

Not in your head. In the doctor's head, as the doctor is too narcissistic to say "I don't know." Nor do they care enough about your suffering to further investigate.
If you can, suggest finding someone that will believe you and actually not harm you. It is so harmful to a patient to be dismissed, told they are mental and not further try to come up with a diagnosis, and in a good world, a root cause.
Hope you get some relief soon.

I'm sorry you've been suffering and you've had to come here.

Many of us have anxiety issues, and it's not very strange considering what we're going through and all the uncertainty it involves. But don't allow an incompetent and unempathetic physician to convince you that the cause is anxiety. Anxiety can and does make the PN worse, certainly, but it doesn't cause it, not this way. Can it, perhaps, maybe, but highly unlikely that it would manifest that way. I used to get eyelid twitches when stressed and anxious, but I didn't get symmetrical, progressive whole body SFN symptoms. So when I had the first neurologist, after two negative EMGs, say it was stress and anxiety and I should just relax and exercise, since it might be some soft tissue too, I went to the next, and when that physician was an equally an incompetent moron, I went to a third, who was surprised they hadn't even done a skin biopsy, since I clearly had the symptoms of SFN and only a skin biopsy could diagnose it; well, an EMG couldn't at any rate.

Physicians use the 'it's all in your head' etiology when they come up against a wall and can't figure it out, most often through sheer laziness and incompetence. Become your own advocate, reduce anxiety (easier said than done, especially at the start when so much is uncertain), and don't allow physicians to push you around. PN needn't be a lifelong horrible sentence, especially if you're proactive and have good medical care, which does exist, however rare.

Until today, despite my diagnoses, which seems to have an autoimmune etiology, I'll have physicians say to me 'you look great', 'you're a healthy young man', etc., etc., because they just don't want to think and to run tests to figure out what's going on. These is some ageism in all this too, in a reversed, strange sort of way. Being young does mean that you can heal more effectively, if you do things right/create the conditions for it.

I hope that helps somewhat. This place is a great resources. It has helped me quite a lot. You've come to the right place.

My favorite "all in your head" story is the one I heard for two years before switching doctors and finding out I had a 10cm. benign brain tumor!

I am so sorry!
What an incredible story!!!

That's just criminal. Sorry you had to go through that.

--it was "all in your head".

I bet you get to eat out on that story for the rest of your life, and you've got a great weapon to use against uncaring doctors and others, too.

But, in seriousness, people, we all know our bodies better than anyone else can. There is a nasty tendency for people (especially women of a certain age--there's a lot of medical system sexism and ageism out there) to be dismissed as anxious or crazy by time-pressed doctors if some "smoking gun" doesn't obviously pop up in the first round of investigations within whatever scenario the doctor is pursuing.

Do not give up hope on finding physicians who will delve and work with you. they are out there. It is often hard to find them, especially if you are in a rural area or not near large teaching institutions, but keep on plugging to find them--talk to people, look on-line, get recommendations, etc. The life you save may be your own.