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

Thank you for a lucid article on this complex subject. I am a massage therapist (USA) and I have several clients with fibromyalgia. I have been in contact and doing massage on people with FM for over 10 years, and I have been very fascinated by this disease for all of that time, and done a lot of reading on it. I'm not sure where you are located, but in this country the medical establishment has decided that massage weekly is definitely indicated as part of the treatment/management of this dis-ease, and many patients find it helpful. The doctors here also advise daily light exercise, as you mentioned in your article.

I would be very interested in a dialog with more practicioners who have worked with the people who are suffering from this condition. In my informal and unscientific personal surveys, this is what I have learned.

The people I have worked with who have developed fibromyalgia have almost always experienced a huge emotional trauma followed in short order by a physical injury/trauma, or vice versa. Sort of a one-two punch of stress. I have not heard from anyone that they had any sort of sleep disturbance prior to these events, however after the fact and when the fibromyalgia is fully developed they have a lot of trouble sleeping due to the pain. Quite often their physicians prescribe sleep aids for them, and even though they are then able to sleep through the night their fibromyalgia is still a problem for them, so I don't totally buy the sleep disorder model although the results of the study on that are fascinating, and I was aware of that study when it came out.

I have developed a theory about this dis-ease. It is totally unproven and untested, but I would like to see someone with the lab and the credentials testing this out. I believe that fibromyalgia is the result of adrenal overload caused by stress coupled with toxins produced by injury. When you suffer from traumas that cause adrenalin to be produced, you are stimulated into the fight or flight response. Your muscles tighten up, your heart speeds up, your digestive system slows or shuts down. If you are suffering a huge emotional trauma (like your husband dying of cancer before your eyes as you care for him and then one month after his death your father dies suddenly too), you are producing stress induced adrenalin all the time. Your muscles tighten up, and being tight this reduces the circulation to them. If circulation is reduced to muscles that are still carrying you about your daily life and work, eventually metabolic waste products begin to build up. Also, reduced circulation means less oxygen to the working muscle, which means it is working anaerobically and therefore producing lactic acid. Now your muscles start feeling sore. (Incidentally, you probably are not sleeping well due to the emotional trauma you are experiencing -- sleep disturbance may be a factor after all.) Then you have your physical injury -- say you tear your rotator cuff, and ultimately have to have surgery. More stress, more adrenalin, more toxins. Probably very little exercise as you recover from the injury. Eventually, the soreness and the tension get to the point where you now have pressure points, more sleep disturbances, and chronic pain. Anything else that you are doing to increase your toxicity level, like eating food with artificial colors and artificial flavors, or pesticide residues, breathing air laden with pollution, drinking impure water, too much alcohol, caffeine -- all of these things contribute to the toxic overload, and the pain. People who are in pain cannot relax, so the muscles never get good circulation to clean the toxins and metabolic products out and so you get more sore, and more stressed because of the pain, and even less likely to relax. The vicious cycle goes on and on.

Eventually, you go to the doctor and are diagnosed with fibromyalgia. Frequently this diagnosis includes being told there is no understanding of why this disease occurs, and that there is no cure, that you can only learn to manage it and live with the pain on some level for the rest of your life. You may also be prescribed some pharmacologicals, (which also add to your overall toxicity levels).

I was interested in your comment that neurotransmitters may be involved. This is not a factor I have thought about before. Perhaps there are some toxins that build up that start acting as neurotransmitters. We already know that there are plenty of chemicals out there that occupy neural sites (like nicotine, cocaine, caffeine), there are probably some we don't know about yet.

Anyway, I have some clients who have experienced remission from fibromyalgia by doing some huge life changes. They started drinking pure water, and eliminated ALL the artificial flavors and colorings from their diet, and as many preservatives as possible. In other words, eating clean fresh food, freshly prepared. Minimized caffeine intake, stopped drinking alcohol. Started taking a couple of gentle 10 minute walks every day. Additionally, they got a one hour massage weekly. They continued taking the drugs their doctors had prescribed while they did these things, and ultimately felt comfortable in not using them. One of them is in total remission. Another gal feels pretty good most of the time except when her family has a big get-together and she eats commercially cured ham (which she loves). When she eats wrong and starts feeling soreness again, it rarely is full body any more, and it resolves fairly quickly. She still uses sleeping aids, but not every night. And she has a hot tub which she uses every night after work. This woman is a hair dresser and I feel sure that if she stopped giving perms and having acrylic nails performed in her salon she would stop having pain altogether. She usually feels a lot better when she has had a vacation from the toxins in the salon.

One of my biggest quibbles with the medical establishment is their continued position that there is no cure for this condition. I do not believe it and I think it is cruel to give people a life sentence to pain with no hope of an end to it.

I know this post is very long, but I'd like to see some discussion of my ideas, and I'd also love to hear some anecdotal evidence pro and con that might help shed light on the condition.

Thanks for reading the whole post.

Hi,
Dont know whether anyone still following these links re: the fibromyalgia, but I found it V interesting being a massage therapist in the UK and also a fibro sufferer (that is when I can get the body to co- operate! )
I am interseted to know if anyone out there has pains in the intercostal muscles( between ribs)These are back and front and some pain on inhalation is a real problem to me and has been since begin 2007 continuously. I know it is not a "normal" trigger point but that some people have . Also really int. to hear from anyone who was diagnosed with polymyalgia prior to fibro as I was for some 3yrs before then broke wrist bad and fibro seemed to follow-trauma! I knowtrauma being indicated often prior to onset of fibro.
Also of course any sugestions- I have had most complmentary therapie over the last 4 yrs and although do help none are a solution to the pain.
I am worst during night trying to sleep turning over is VV painful and first thing in day and last thing as I get tired - the worst thing is to sit still but then you cant move 24 hrs a day!
I really want to know when I might get my life back ! I had a future in massage and therapys and now cant work at it.
Look forward to hearing info - I am an info junkie so any news is great - whatever you have tried Id like to hear about.

Many thanks
s.

Hi
Sorry for your illness. I have been oficialy diagnosed with Fibromyalgia 8 years ago. However, I have suffered constant pain in my chest for the last 20 years. The pain is always there and worsens to the slightest touch. Most tender point is between my breasts the sternum and the ends of the rib cage. Not just the muscle hurts but the bone too. I hurt all the time even though I am on very powerful pain medication. I have tried various treatments nothing really works.
Its all a question of degree. Each day is different.
It is unfortunate that there is no cure but, the biggest hope we have
is awarness, research and legislation. Those in turn will lead to cure.
Some times patients gain remission. I hope you do get better
As I can't always stand to be touched massage is not an option at the moment. Wish you well and hope you get your life back. Let me know what worked. lillith