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Date of last update: 10/04/2017.

Forum Name: Neurology Topics

Question: Long term neuropathic pain aggravated by muscle usage

 npilant - Mon Jun 01, 2009 2:08 pm

I've had ongoing neuropathic pain for some time now going on 8 years. Every year it comes on for months and then mysteriously goes away. Every time it is slightly worse than the time before. I've had every MRI, EEG, CAT Scan under the sun without an answer. Recently I've noticed that it my nerves seem to be hyper sensitive also and when I use a muscle like my legs or arms or even abdominal muscles to stand I can get excruciating nerve pain like the nerves are being compressed by the muscle. I now have to use a cane to get around because to much pressure on my legs causes horrible shooting pains and using a wheel chair is quite difficult because my right arm is far more sensitive than the left (so I would end up going in circles since I can only push with my left hand without horrible pains. In addition I have painful spasms in my eye, legs, back and abdomen. Sometimes it even wakes me from a deep sleep and occasionally I get sharp pains when taking a deep breath like a nerve is being compressed. What is this?
 John Kenyon, CNA - Tue Jun 09, 2009 12:43 am

User avatar Hello --

In answer to your closing question "What is this?" it is, for now, at least, idiopathic peripheral neuropathy (IPN). This means you are among the 5-7 per cent of the population who have some form of peripheral neuropathy with the symptoms you've described and no clear underlying cause identified as yet. In some cases there is never an underlying cause discovered. You've had some of the central causes ruled out, which leaves only IPN, at least unless and until someone can discover an underlying cause -- and there are numerous potential ones, but they are often very difficult to identify.

One bit of information you haven't included in your post is any medications you may have been prescribed for this problem. It is difficult to imagine there having been none, and sometimes the medications known to help alleviate the pain of IPN have also been suspected of causing at least temporary improvement in the weakness, gait disturbances, etc., as well. Some examples of such drugs would be gabapentin, pregabalin (sold under the brand name Lyrica) and some of the SSRI class of antidepressants. There has also been occasional success with epidural steroid injections (ESI), although this is still controversial in some circles.

While the most common cause of peripheral neuropathy is diabetes, IPN which appears outside the setting of diabetes or which shows up prior to diabetes is still classifed as IPN instead of diabetic neuropathy, even though the end results and treatments are essentially the same.

If you've been prescribed any medications it would be helpful to know what ones and if they have had any effect at all. If you have not then you certainly should have and the most effective one presently seems to be pregabalin, although it is also one of the most expensive ones.

I wish I could give you a more comprehensive answer, but as common as this problem is, it remains poorly understood. Some days are usually better than others, and the degree of disability varies. There is a theory regarding climate and/or seasonl changes, but this is still under study (generally IPN sufferers seem to have more severe symptoms in cold weather and expereience more remission during warm weather, but there haven't been sufficient studies to prove thisand evenless to understand why this might be so).

I hope this is helpful to you. Please follow up with us here as needed. Good luck to you with this.

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