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Neuropathy and FM

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Old 09-30-2005, 08:38 AM   #1
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mumzy HB User
Neuropathy and FM

Hi there all. Lots of you out there mention the burning pains with FM. Have any of you actually been diagnosed with peripheral neuropathy per se or is it just part of the FM. I have been diagnosed with PN in feet and legs but that doesn't even begin to expain the widespread body aches and pains and overwhelming fatigue it experience. From being a very active 42 year old my body seems to have just shut down - even my digestive system doesn't work properly - I eat like a bird!
Please could anyone help with this as I'm spending a fortune with various specialists and have no insurance (live in London) and the National Health Service is soooooooo slow.
Thanks Pauline

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Old 09-30-2005, 10:00 AM   #2
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Join Date: Nov 2004
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goldenwings HB User
Re: Neuropathy and FM

Hello Pauline,

Welcome to our family. You will get all the care and help you need by coming here to discuss FM. They are the best people I know for love and support.

The problem with what you are asking is that none of us can make a diagnosis as this would not be the thing to do. I know a lot of information can be gleaned by what you are asking, so I will give of my own experience of this. I have a nerve and muscle wasting disease, which is also likened to PN and which I have had for a lot of years. I only developed FM about 1 year ago.

FM as an illness does not cause wasting away of the muscles or joints. It is not termed as a wasting disease. The reason muscles go mushy and joints weaken in FM is because it is so hard for patients to even move at times never mind exercise and get through the horrid pain it causes. This in turn makes joints stiff and muscles weak, but the actual wasting does not occur as as result of invasion by FM, it is caused by lack of movement which is caused by utter fatigue and pain. There have been quite a few dicussions about this. if you scroll back on the contents pages, you will find them. This I am sure will prove very helpful to you.

The information I am going to share is not given in any kind of medical capacity, but from my own personal research and interest in this topic, as I have experience of this condition. The biggest problem with being diagnosed with PN is that it can be "caused", for want of a better word, by almost any bodily malfunction. For example:-

Peripheral neuropathy may be either inherited or acquired. Causes of acquired peripheral neuropathy include physical injury (trauma) to a nerve, tumors, toxins, autoimmune responses, nutritional deficiencies, alcoholism, and vascular and metabolic disorders. Acquired peripheral neuropathies are grouped into three broad categories: those caused by systemic disease, those caused by trauma from external agents, and those caused by infections or autoimmune disorders affecting nerve tissue.

One example of an acquired peripheral neuropathy is trigeminal neuralgia (also known as tic douloureux), in which damage to the trigeminal nerve (the large nerve of the head and face) causes episodic attacks of excruciating, lightning-like pain on one side of the face. This is something I actually had prior to being diagnosed with MNM which is in the whole of my body.

In some cases, the cause is an earlier viral infection, pressure on the nerve from a tumor or swollen blood vessel, or, infrequently, multiple sclerosis. In many cases, however, a specific cause cannot be identified. Doctors usually refer to neuropathies with no known cause as idiopathic neuropathies. The thing is too, that the treatment will vary according to which type of PN the ateint has and how soon after onset it was diagnosed and therefore treatment sorted.

In my case, I have SLE, which I have had for over 30 years, I'm not saying the SLE was the cause of my PN, but when I presented with neuropathy problems, the doctors in their wisdom - wrongly it turned out - didn't look any further than lupus. What I mean is they linked my weakness and so on to lupus and didn't listen to what I was saying about it "feeling" totally diferent to how I had felt before. I found this so out of order, but in the end because I insisted that I wanted further testing, I was listened to eventually and proven right, there was something else going on too. In my case, because they had not listened, things had progressed quite rapidy.

As you say you have already been diagnosed, I am hoping that you are having the correct treatment, and hopefully that this will prevent the acceleration of the problem. I personally, as I said, have had this for such a long time, and I do not associate it with fibro in any way.

I only ever speak of my own experiences here, and I hope my story will be of use to you in that you can research it more yourself and perhaps get answers to your questions. Maybe others will come on and have more input. The thing is if you do need to speak more about it and you think I might be able to help, I am going to be away from my pc for a couple of weeks starting tomorrow, Saturday 1st October, so if I can help any before that, please do get back to me.

Take care.

I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 09-30-2005 at 10:17 AM.

Old 09-30-2005, 01:09 PM   #3
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pa235 HB Userpa235 HB Userpa235 HB Userpa235 HB Userpa235 HB User
Re: Neuropathy and FM

Hi Pauline,

Golden wings has given you some great info as she always does. She goes out of her way to help all of us.

I get a lot of burning pain down my right leg nd tingling in my foot, also get burning in other areas of my body but this is by far the worse area. My chiro told me that the burning comes from a spasm hitting the nerve. I know a lot of people with FM do get the burning pain.

Welcome to our group, lInda

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Old 09-30-2005, 07:32 PM   #4
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Join Date: Aug 2005
Location: East Texas
Posts: 231
April414 HB User
Re: Neuropathy and FM

Hi, Do you take ny med for migraines or epilepsy? For 3 years I took Topamax an epilepsy drug to prevent migraines. I had such pain with the tingles and pins and needles. For almost 2 years I didn't have it, then it just got worse and worse. My dr. said it was neuropathy and prescribed seroquel for it. It finally got to the point that it was doing the same the same thing to my head so bad I'd wake up in the middle of the night scratching my head so hard my scalp burned. I got off the Topamax and with in about 2 months the pins and needles, tingles and horrible feeling in my head had stopped.
Anyway, just a thought. I hope you have it only because of something like that.

Old 10-01-2005, 09:07 AM   #5
Join Date: Jun 2005
Posts: 325
Piano0105 HB UserPiano0105 HB UserPiano0105 HB UserPiano0105 HB User
Re: Neuropathy and FM

I have the burning and tingling but, in addition, my extremeties and face turn red and hot to the touch (also have Erythromelalgia). Not sure, but I think it's connected to the Fibro. However, I don't hear these additional symptoms from anyone else with Fibro. In my Erythromelalgia support group about half the people also have Fibro. In my case, I got the Fibro first.

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