"....Although the etiology of FM is not completely understood, the syndrome is thought to arise from influencing factors such as stress, medical illness, and a variety of pain conditions in some, but not all patients, in conjunction with a variety of neurotransmitter and neuroendocrine disturbances. These include reduced levels of biogenic amines, increased concentrations of excitatory neurotransmitters, including substance P, and dysregulation of the hypothalamic-pituitary-adrenal axis. A unifying hypothesis is that FM results from sensitization of the central nervous system. "

----------------------------------------------------

So...here's my question....

A couple of years after I was dx'd. My mom watched a show on 20/20 or dateline or one of those that had a story on a surgery that could/can be done to 'cure' Fibro.

From how I understood it, they cut into the neck and do some type of 'draining'. BUT...that's all I heard about it and haven't heard anything since.

Now that I'm reading about this Substance P...I'm wondering if maybe the whole thing was a 'research/study' or something of some kind where they were actually trying to reduce the Substance P from the spinal cord?!?!

Has anyone heard of this?

My ex-step daughter has had some troubles for the past couple of years with numbness of what started in her arm and hand and ended up her entire right side before they found anything. They finally found out that she had spina-bifida (sp)...sorry...that they had missed when they checked her as an infant.

She had to have surgery last April and the went in the top of her spine and took out a fairly big piece of her skull, then drained the 'fluid' out of her spine and put cowhide where they removed the skull to keep it protected as well as 'open' for natural drainage as they had to remove the top two vertabre (sp) in her spine as well.

So, sorry I got off topic with this, but I'm wondering if maybe too much of this Substance P in our spinal cords could be removed the same way as her surgery removed the excess fluid in her spinal cord...and possibly be a 'fix' and/or 'cure' for Fibro!?!?!?

I've not heard about the so called surgery for Fibro though since the ONE time my mom watched the program on it. I'll look into it...but in the meantime...

Does anyone know of or about this? Even ever heard of it? I'm very interested!!

but since then, this type of surgery has been discounted by most of the medical community as unsafe and unnecessary for most fibromyalgia patients, and will only help you if you truly have what is called a Chiari Malformation in the cervical spinal (neck) area. Apparently a very few Fibro patients are misdiagnosed when they actually have Chiari Malformation (it is a rare condition) but only a neurologist can determine this with an exam and MRI. Even then, this article states that many people with Chiari malformation do not have any symptoms at all. Most doctors now recommend against this type of surgery for fibromyalgia, as it has not been proven to be effective. There was no mention of Substance P in this article. Here's the link:

http://ww2.arthritis.org/resources/arthritistoday/ 2000_archives/2000_09_10_chiari.asp

Another thing I have read about Substance P is that researchers are not yet sure whether the increased concentrations in the spinal fluid of fibromyalgia patients are one of the causes of fibro or the result of the disease process itself. If the increased amount of Substance P is due to the disease process, then it is unlikely that surgery to eliminate Substance P from the spinal fluid would be helpful in the long run.

leslie

I read the article and it was very interesting to me, considering I had a neck injury before my FM symptoms started. But, I also had an extreme tragedy, stressful trauma which I was still going through at the time of the neck injury.

The day after the neck injury is the day my left knee began 'giving out' on me when I walked. every step for a long time until I learned to think when I stepped with that leg and kinda locked it. This problem just comes and goes now. Neck pain is always there.

Have never had it xrayed (no insurance) or checked. But, I have all the classic symptoms of FM and was dx by neuro.

I don't have all the TP's though. ??????

That's just MY luck!!

Do you have any TP's teribelle?

I have many places that really hurt and then some places that cannot be touched....which is it?

Neuro dx FM and I have everything plus, but the TP's confuse me.

Jeez...did that even make any sense?!?!

Then, it will mostly go away, come back, etc. Just like everything else. The top of my thighs will ache and feel so twisted for days, weeks and then they are fine. But something else will always take it's place.

elbow will be so tender it hurts to move, touch, then not.

It's always about 5 or 6 things at a time, then they all play musical chairs and it's a whole new array of crap.