Canadian Neuropathy Association
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Undiagnosed nerve pain

Hello.

I am 44 years old, male from Sweden.

Since October 2015 I've had really distressing nerve pain, most severe in my feet, but also in my face and lower back.

I've had 4 neurological investigations (with EMG, nerve conduction studies and thermal thresholds), seen 7 neurologists and 30+ other doctors, and been on a multidisciplinary pain assesment.

All tests have come out fairly normal and nobody seems to have a reasonable explanation for my nerve pain, and because of the normal neurophysiological tests a diagnosis of peripheral neuropathy has been ruled out.

Nevertheless, the pain clinic decided to refer me to an ortopedic surgeon for evaluating tarsal tunnel syndrome.

In February 2018 I had surgery for tarsal tunnel syndrome in my right foot (worst). According to the surgeon the tibial nerve had signs of compression and there were varicose veins in the tarsal tunnel. Unfortunately the surgery didn't help at all.

And these findings don't explain all of my symptoms anyway. So I guess there's something else going on. Google says peripheral neuropathy, but the doctors say no peripheral neuropathy or small fiber neuropathy.

The nerves affected by symptoms are: posterior tibial nerves in both feet, pudendal nerve on left side and infratrochlear nerve (?) on right side of the face.

The pain is characterized as: tingling, prickling, cutting, stabbing, burning, crawling and some numbness.

There are also a lot of random muscle twitching at various locations in the body. Tinel's test is strongly positive when tapping on feet and lower spine.

Pain treatments I have tried (without significant effect): Gabapentin, Lyrica, Amitryptilin, Botox injections.

The only medication that seems to work a little is Oxycontin and nerve block with local anesthesia.

The symptoms are always worse in the evenings. And slowly getting worse overall.

It's a total inferno of unpleasant sensations in my feet 24-7, and this makes me really panicky and suicidal at times.

Any suggestions? Should it be this hard to diagnose the causes of neuropathic pain?

Regards J

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Hi JakeBlake😊🌸🌿🦋

I’m sooo sorry that you’re suffering so badly. I don’t have an answer for why diagnosing your specific problems which Im truly sorry about. I wish I had a medical wand that I could cure you with one touch. I also understand about wanting to choose death when the pain is unbearable... I have done this over my back injury 4 years ago. One thing I can tell you is that I had given my accumulated symptoms to countless doctors over the years and never got a diagnosis until 2014. After 63 years of being told everything from you’re crazy to being a hypochondriac l finally received a diagnosis of being 1of 3 on the planet 🌎 with the rarest form of Inherited Erythromelalgia. So even as hard as it is don’t give up. Persevere one day you’ll be diagnosed too.

😊🌸🌿🦋 🤗💕😘

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I guess I was fortunate in getting a diagnosis of small fibre neuropathy. It took a couple of years but there was a delay in getting a nerve conduction test. Having a label is useful but the pain relief is all that can be offered. If the Oxycontin helps then stick with that as long as you recognise the addiction risks

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Thank you for your reply martino.

Sorry to hear about your small fiber neuropathy. How is it progressing? Worse, same, better?

This business of nerve pain seems to need some improvment . Hard to get a diagnosis, and if you do, there's nothing that can be done... sigh.

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Hi

I am in the unfortunate position of having Restless Leg Syndrome as well so I don't know sometimes where the pain is coming from! I use a Neupro patch which certainly helps with the RLS and take extended release tramadol and gabapentin for the pain. My neurologist is worried about me taking opioids and wants to wean me off them. I on the other hand would like to try targinact! Some days I manage fine but others less so. Fortunately my glass is always half full! Best wishes Martin

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Hey. I'm sorry you're going through this. Here is an article posted by a doctor that says a negative EMG does not mean there is no neuropathy. Also, unless you have had a small fiber biopsy to check for small fiber neuropathy, it cannot be ruled out. They can't diagnose SMN off of a Nerve conduction test. Please continue to search for answers. There are always answers out there. So many things can go wrong and so hard to find out. I just read about a number of severe gastroperisis patients having normal stomach emptying on their test. Then a new condition that was studied and discovered by ECG of the esophagus has found out that these subset of patients have problems with the Rhythm in their esophagus and stomach. It's kind of like when you have heart Rhythm problems. The signal is wavy and cause extreme nausea that cannot be explained without this test. Crazy how it is always something. No one makes up their symptoms. There is always a problem and there is always a cause. Hang in there and keep on looking for answers.

Here is the link: realiefcenters.com/negative...

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Thanks for your reply blizzard2014.

A small fiber neuropathy could certainly be considered once again, even though the symptoms don't seem to fit very well.

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I'm reading your comment and I notice when I have a gassy stomach or need to empty my bowels my foot goes crazy. I'm curious as to where this article is that you found with stomach emptying. Can you expand? This may help me so much.

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Here is the article, but it is not about the nerves in the legs going crazy. Its where some patients have nerve dysregulation in the nerves that control the throat and stomach. It causes some of the classical symptoms of gastroperisis, but through a different pathway that was previously undetected. They measure the nerve activity in the esophagus just like they do the nerve firing in the heart and they can see the dysrhythmia like they can in the heart through an EKG I hope this helps.

Here is the link: realiefcenters.com/negative...

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Thank you SO much! I'm looking for anything that might help my situation .

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I appreciate how articulate you are in describing your situation. Wow! I thought I had issues. After a lot of doctors, I am finally diagnosed with Canvas or it could be a certain SCA (but at this point I do not want to spend $20,000 for the blood testing). So for now I suffer from Canvas. First half of day is good. Second half, not good (a lot of laying around on yoga mat and trying to manage neuropathic pain). At that point I take 50 mg. of tramadol and sometimes medical marijuana. I also take Lyrica, 75 mg. am and 75 night.

Life with pain! I feel for you......you're hit hard. - Michelle. Woodstock, NY

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Thank you for your answer Mmenergy. Sorry to hear about your Canvas syndrome, seems to be a really rare condition...

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I have been prescribed Oxycotin and take it from me; that's the worst medication to take. It MAY help for a short amount of time only to stop working unless you take more of it and then you are stuck taking a pill just to keep you from getting sick as it is physically dependent. I notice that my right foot pain is worse when I lay down and I HATE to admit this but when I have gas or I'm in need of a bowel movement. I have read forums where people are having a lot of similar symptoms.

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