SO WHAT REALLY IS FIBROMYALGIA?

I have been sitting for days pondering on whether or not I could have fibromyalgia as I am fed up of not getting a diagnosis of MS even with positive tests and confirmed optical neuritis.

Well I am more confused then ever about what it is.

I have read so much stuff and there are so many different ideas about it, and specialists talking about all kinds of things.

Some of which would make sense to some of my symptoms.

1. People with FMS have increased levels of substance p in their spinal fluid. Substance P is a chemical signal that causes us to experience pain. Under normal conditions, we produce substance P only when we are injured. When an injury occurs, the nerve cells serving that area begin to secrete substance P, and our brains experience pain.

Increased levels of substance P actually increase the sensitivity of nerves to pain signals and thus heighten our awareness of pain. In the spinal cord, elevated levels of substance P may cause fairly normal stimuli to feel like intense pain.

WELL THAT SORT OF MAKES SENSE. I have told my neuro and my GP that my pain feels like someone has tuck my nervous system on to high and it is stuck there.

2. FMS has a problem with the autonomic nervous system.

Our research on fibromyalgia.  (Article here: http://www.martinez-lavin.com/Fibromyalgia.htm

We studied a group of patients with fibromyalgia and compared them with healthy controls. By means of portable recorders, we registered the subjects' heartbeat for 24 hours while they followed their routine daily activities. We found that patients with fibromyalgia have relentless hyperactivity of the sympathetic nervous system. This abnormality was also evident during sleeping hours. In a different study, we subjected patients with fibromyalgia to a simple stress test (to stand up). We observed a paradoxical derangement of the sympathetic nervous system response to the upright posture. Such findings have been confirmed by other groups of investigators.

The results of these studies suggest that a fundamental alteration of fibromyalgia is a disordered function of the autonomic nervous system. Patients with fibromyalgia lose the normal day/night cycles (circadian rhythms)  and have a relentless sympathetic hyperactivity throughout 24 hours. This may explain the sleeping problems that the patients have. At the same time, such individuals have sympathetic hypo-reactivity to stress, which could explain the profound fatigue, morning stiffness and other complaints associated to low blood pressure. This autonomic nervous system dysfunction could induce other symptoms of fibromyalgia such as irritable bowel, urinary discomfort, limb numbness, anxiety and dryness of the eyes and mouth.

...........AGAIN THAT WOULD MAKE SENSE TO SOME OF MY SYMPTOMS.

How on earth are people supposed to really get a diagnosis of an illness that no one seems to really understand.

Most GPs just treat it as a problem with the muscles and that they ache and patients need to exercise and get more healthy.

This is a brilliant web site on Fibromyalgia.... http://www.medicinenet.com/fibromyalgia/article.htm

I was well chuffed as I did the quiz and got 100 per cent lol.

I am wondering now if i should perhaps see my GP about fibromyalgia i dont suppose it can do any harm, but i am not sure if she knows what it is either lol.

[lindahand]

If you haven't I would go to a rhuematologist. They handle FMS. Your general doctor will have a basic understanding but judging from the research you've done - you'll probably know more than they will. I have found general doctors to be rather useless in regards to FMS.

If you have all the signs and test of MS though I would get a second opinion. MS and FMS share many of the same complaints, but have completely different treatments, and you can have both conditions. MS is a horrible disease. I sure hope you don't have it. My best friend has it and I see her struggles with it.

[MrsAristotle]

Hi yes your right about my GP she only seems to get basic stuff lol.

I did see a rhuematolgoist about my symptoms when the neuro wouldnt give me a diagnosis of MS but she said it was all neurological and couldnt help me so i was just sat back in the middle of know where.

Perhaps I need to go back and ask my GP if i should be reassessed with the rheumy or perhaps the neuro. Not sure i have the energy anymore for the fight.

I told them at the beginning i just want an answer. If it is MS or FIBRO or EVEN M.E. I dont care. I just want to get well again.

My neuro said to me there is no such thing as M.E. so what chances do i have lol. xxxx thanks for listening.

[Nikodicreta]

Hello ladies.
Welcome to Medical Philosophy 101!
Facts:
1. FMS is NOT a disease. It is a syndrome of symptoms.
2. The are old diagnostic criteria ( still used by most Doctors and Specialists)  and there are the new diagnostic criteria.
3. There's no cure (medically speaking)
4. The diagnosis is usually made by a Rheumatologist.
5. FMS is still not accepted as a medical syndrome by many doctors.
6. FMS patients have to fight to receive disability status (available only in certain jurisdictions) due to the lack of recognition.
7. There are no known and confirmed causes of FMS.
8. There are other conditions that mimic FMS.
9. FMS is not a progressive syndrome.
10. There are over 10.000.000 FMS sufferers.

Questions.
1. If I was diagnosed with FMS using the 11 out of 18 point criteria
on a day when my tender points where very tender, do I still have the same diagnosis if I do not meet this criteria if I were re- tested today.
Or do I lose my FMS label?
2. If my doctor or specialist does not believe FMS exists, do I still
have FMS and if I do how do I really know and what do I go about it?
3. If I suspect FMS, how does the diagnosis really help me?
Can I not go to my family doctor and ask for some prescription for my symptoms instead? Is there a significant difference in meds for FMS,
or is this marketing? Or are they the same ones?
4. Why do I have to see a Rheumatologist if my symptoms are mainly
neurological and I have been diagnosed with FMS, but met the dx criteria?
5. Would I be better off not to get diagnosed with FMS but with a similar perhaps more respected condition that qualifies me for disablility?
6. What if my diagnosis is wrong as there are other conditions that mimic
FMS that may be curable?  Can I sue the Doctor who mis-diagnosed me?
7.If a doctor discounts FMS because I look fine -same with my family-
how does the diagnosis help me and what do I say to convince them?
8. If I have FMS along with stress and anxiety, does FMS cause stress and anxiety or is stress and anxiety causative factor in my FMS?
9. With over 10.000.000 FMS sufferers, where's the strength in numbers
gone to?
10. How being diagnosed with Fibromyalgia Syndrome is serving me ?

   Answers to be discussed and debated....whenever!
  Cheers!
Niko
P.S.
I have NEVER been -officially- diagnosed with anything!