h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

I am a physician, and although I am not a specialist in this field, several points must be made.

1) we have no clue what this is. It may be one or several things, including psychiatric entities

2) as this is diagnosed on the basis of subjective symptoms which many people have, without question this disorder is overdiagnosed

3) as there are no real objective diagnostic tools to prove or disprove the physical components of this condition, there is a very real probability that there is a significant psychiatric component. This is NOT to say that it is not a real entity. The mind and body are quite linked and the discomfort from a psychological condition can equal or surpass that of a physical one. The pharmacology supports this hypothesis.

My best wishes are extended to all who suffer this condition, and my hopes for improvement or recovery.

Actually, there has been quite a lot of good research in this field over the last several years -- good reading, if you're interested. As a result, your statements are a bit out of date.

"we have no clue what it is" -- definitely an exaggeration, if you look at the current state of the literature. while we do not have a precisely defined model of what fibromyalgia is, we do know quite a lot about it, and it can be experimentally replicated.

"without question this disorder is overdiagnosed" -- as an epidemiologist, this sentence made me laugh quite a bit. in the same sentence, you're essentially saying that there's no 'gold standard' for diagnosis, and that the entity is overdiagnosed -- the two statements are mutually exclusive. Without some kind of gold standard, it's not possible to determine whether or not it is overdiagnosed. That being said, I would agree that it is often *inappropriately* diagnosed, with physicians using it as a 'diagnosis of exclusion' in patients who don't really meet the diagnostic criteria.

"there is a very real probability that there is a significant psychiatric component." again, there's been some good recent research disproving this theory. While fibromyalgia is quite often comorbid with psychiatric conditions, it has also been shown to exist in patients who have been thorougly assessed and shown to have no psychiatric symptomatology.


Mikey

A personal thank-you to Mickey

Hello

I read and I appreciate your reply. In honesty, a condition without known cause, a paucity of objective benchmarks and which may be post traumatic, post infectious, autoimmune or possibly even psychogenic does indeed qualify as a condition which "we have no clue as to the cause".

I don't believe any good cause is served by needless confrontation, and will of course bow to any reasonable reference which reports otherwise, but must note that none was presented above.

I fear we do agree on the problem of diagnosis here. Forgive my terms which may have been poorly stated and easily misunderstood, I meant that the errors in diagnosis, both false positive and false negative were probably quite high. Again, we agree, Absent some type of reliable test, we can never be sure and diagnosis is not reliable.

Please do not misunderstand. I do not mean to assail those who allready suffer. I simply believe that progress depends upon a good knowledge of our starting point, which, for this condition is very limited.

Thanks for your 2 cents. I am glad that we don't have to pay more for it!



In reality, Tim, I understand why you would say such a thing. I had never heard of FMS until I got it! But just because you don't know what it is, don't make the mistake of so many people and say that it might not exist. That is the same mistake made by the rural (andd rather parochial) farmer who denied the existence of elephants based on a description he had heard. "There ain't no sich animal!" is okay for 19th century rural Iowa, but it won't wash in 21st century cyberspace.

Your time for reading and reply is probably worth far more than 2cents - and I thank you for it. The expression simply means that my contribution is of finite value.

I regret your pain and wish it would vanish.

I have no doubt that the condition exists in some form, re my first post.

I simply am unsure as to what form or forms it exists in. To quote your example of the farmer, once he moves beyond the into the realm of belief from the "ain't no such animal" stage - he often labels things too broadly or in error. Both are the products of ignorance.

What we know presently as fibromyalgia may end up as several disorders which have much in common.

Once we know the cause and mechanism of these condition or conditions, we can approach it intelligently. At present, this is not the case.

Again, best wishes for success and relief in your case in specific, and for your peers in general.

Again, I think you're going to far in extreme about what we do and don't know -- saying that it can't be approached intelligently is a bit much. Approaching something intelligently means taking what we know, and going the best we can with it. Your approch seems closer to -- we don't know everything, therefore we can't do anything.

There's decent evidence that disrupting sleep can cause fibromyalgia in people who are otherwise healthy, and randomized controlled trials have shown that treatments aimed restoring healthy sleep patterns lead to a significant improvement (and sometimes resolution) of symptoms. What's not intelligent about taking that, and applying it to patients? No, it's not going to help 100% of them, but you could say the same thing for any medical intervention for any condition. There's never a "one size fits all" approach -- if there was, doctors would be out of a job.

There's also evidence from randomized controlled trials that daily exercise leads to a significant improvement in symptoms -- it's not clear what the mechanism is here, but that doesn't make it non-intelligent to take something that's been proven in RCTs and try applying it to patients.

And no, I'm not going to post list after list of references -- you should be able to use Medline just as well as I can if you're interested in seeing the research. I get paid to do such things at work, so generally try not to do it for free when I'm at home.

Mikey

I went on holiday to Mexico where I took a course on scuba diving, whilst taking this course I had to perform underwater safety tasks. One of these tasks caused me to have compressed free flowing air blast into my lungs. I felt sore and told the diving instructor who informed me that all was ok. He told me that an over expansion of the lungs would cause bleeding and possibly death and as I was not dying at the time he chose not to take much of an interest.
A few hours after this I noticed tingling in my hands and arms, my feet went cold and clammy so I explained to the instructor how I was being affected. This was getting me nowhere and I new in three days I would be on a flight back to the UK.
I got on the flight and all was ok for about half an hour and then severe pressure built up in my right arm and my heart started to race. I called for the flight attendant who asked me to move to the rear of the plane where they put me on oxygen. I was asked if flying concerned me as they thought I was having a panic attack, I told them I really enjoyed flying but thought I had air trapped inside my lung causing real pain in my chest and arm. They contacted the ground and asked for a medical opinion. The flight was forced to make an emergency landing at Bangor Maine.
I was met by an ambulance on the runway where the paramedics placed heart monitors and other electrical stuff all over me. They thought I was having a heart attack and gave me some medication that went under the tongue. They asked if I felt better, I replied with a resounding NO, I am not having a heart attack! I have a problem in my lungs caused by an over expansion whilst diving.
They took me to the hospital and ran tests X-rays and woke up a diving specialist. They could see something at the top of my lung that could have been water or air.
I had to return to the UK by sea some six weeks later.

I have to say that in my mind I was very close to passing out or dying whilst on that plane. The whole experience was TRAUMATIC.
Since that time I have suffered many of the symptoms explained on this and many other sites. I have had chest pain, irregular heart, very sensitive skin on my chest, lack of sleep, headaches and difficulty in walking in the early days.
I went to my doctor and he sent me for all the blood tests and several x-rays. Eventually I was diagnosed with having pleurisy. It seemed to take forever to cure this problem. After this the pains in my chest remained so more x-rays and blood tests were done. Eventually I was diagnosed with having Fibromyalgia.

If this is fact true, I have suffered from it for near on two years now. I have had the anti-depressents and pain relief tablets, all of which do not cure anything. I still suffer from pain which is mostly located in my left flank muscle, this pain is sometimes very bad and there is no way to relieve it.
The point I am trying to make is; If this had a root cause due to severe stress caused by the trauma. Has this caused the nervous system to go into overdrive releasing chemicals in the brain and or the central nervous system, if so how come (THEY) can't be controlled?

MarkSP

There's been a great deal of information discovered on this subject in recent years. My doctor has me on Neurontin, 300 mg X 3 each day, and flexoril, aimed at both relaxing the muscle spasms and stopping them.

Some doctors treat this as a rheumatic disorder, while some classify it with Muscular Dystrophy and that group of diseases. One thing I know is that the disease is incurable, but the pain can be alleviated with a combination of preventive (Musclular spasms can be cut back) and coping mechanisms (Basic pain home remedies, like heat and message). Pain meds are also available, but treat only the symptoms, not the source.

Neurotransmitters play a big role in this disorder. Pressure points and the ruling out of other causal effects are used to diagnose. Most patients report relief with chiropractic treatment courses. Many suffer from "restless leg syndrom", depression, loss of mobility, exhaustion and lack of sleep. Most have decreased tolerance to pain in general.

Sucessful treatment is highly individualised, and may be achieved through a variety of treatments aimed at acceptance of the disorder, increase in sleep and mobility/energy and a reduction of pain.

Basically, you learn to live with it, and learn that it doesn't define you.

SNT
No, you are right you are not a specialist in this field.
It is unfortunate that because of GP's like you and greedy drug companies, that people who suffer the pain and indignities of this horrible illness are treated badly. This illness has a cognitive, psychological, neurological component. You and other physicians will do justice to your proffession and patients if you made time to study it properly. Because after seeing the specialist you are the one responsible for the continued health and coping ability of your patient.
Fibromyalgia patients commit suicide because their GP let them down.After their bodies betrayed them their so called Dr.puts the final twist in their aching failing bodies.
wishing you enlightment and compassion
Aspera