As far as consumer feedback, institutions pay big bucks to these companies that send patients surveys, which I dutifully send back and I imagine they get deep sixed....

As far as what Fibro is....I carried that diagnosis for 10 years, despite having ligaments with bone fragments imbedded in them, torn from my bones due to a high speed head on....I had Lyme Disease, and now small fiber neuropathy AND myopathy....I assume what I had is what is referred to as 'Fibro'.

Very little of me every burned. My SFN was not found until it affected my heart rate, caused me to be globally anhidrotic, caused presyncope due to hypotension....hardly what any one thinks of when they think of PN.

I never realized that what I did NOT feel below my knees was neuropathy.

I never realized that deforming joints were neuropathy.

I never realized that dorsiflexors spasming was PN, nor broken bones due to PN, nor gastroparesis due to PN.

This is not what people think of when PN is mentioned.

I would also like to add, that the CMT Association and Hereditary Neuropathy Foundation, and other neuromuscluar disease associations such as the MDA contribute greatly toward research and the relief of misery of PN. The Parkinson's Disease folks came up with drugs to relieve RLS which can be for many PNers unmanageable via any other method. I think many good organizations are involved in research and mitigation of the effects of this condition. I, in no way feel abandoned by the medical community.

I think for now, Fibro is a 'layover' on a long trip to a diagnosis, that may be completely unthinkable, as was SNF for me. I thought diabetics, people with cancer, amyloidosis or SLE got PN, not some one with 'Fibro' by any name.

If Fibro just means chronic pain that is not attributable to any known disease that can be tested for OR untreatable pain by any thing else other than the methodology we have available, (basically chronic pain with no known etiology) then it is what it is....

if however, it represents a paraneoplastic PN or amyloidosis or a hereditary PN where a young person is making decisions to have or not have children....THAT is another story, and a shame that the affected patient was not diagnosed....properly.

One out of 7 Americans lacks any kind of insurance at all. I think it is easy to forget that one out of 7 people go to the doc, get a disasterous diagnosis, such as cancer or other life threatening illness, and have no way to pay for even basic treatment. I feel very blessed to have had the diagnostics and treatment I have been afforded.

We can make all the progress in the world in terms of what treatment is out there, but how available is it?

There are many types of degenerative neurological conditions, research on any one of them, from Parkinson's to ALS to CMT is all enlightening.

Because PN has so many different causes, and so many differing manifestations, it has been difficult to unite under one umbrella.....such as MS or Breast Cancer. Except for hereditary PN, CMT, which does seem to have a solid advocacy, it is hard to get all the PNers in one boat, because many of them have other boats. Not all PN has the same disease mechanism or process.

Those who are content with Fibro as a 'disease entity' will likely not pursue any further diagnostics. That is their perogative.

Those who are not content with Fibro as a 'disease entity' may be blocked by their physicians or insurance from pursuing other diagnostics. That is a shame.

And there are those who have had all the diagnostics, exhausted all possibilities are still hurting and sore, with something, and that something, however it feels to them, is called, "Fibro". That is very difficult.

Now that I know my nerves are degenerating, and my muscles are also degenerating, and exocrine glands are not functioning and abnormalities are evident in quite distant areas of my body....I know it isn't Fibro, but I bet I could find a doctor that would say it is.

Enthesitis very aptly describes even the trigger points of Fibro....you never hear of this condition any more. In my experience if you have a certain number of sore spots in these insertion areas, and have negative blood work, you get the diagnosis of 'fibro'.