FIBROMYALGIA/CHRONIC FATIGUE SYNDROME
Support, love and understand people with fibromyalgia.
Remember the body aches you experienced the last time you had a bad flu? Now multiply that pain times ten and you have some idea of what everyday life can be like for fibromyalgia sufferers. A chronic medical condition characterized mainly by constant pain in the muscles and tendons throughout the entire body. I am not talking of muscle pain like "eeps I overdid it at the gym".....You have muscles all over your body. From the top of your scalp and face, right down to your feet and tip of your fingers. Imagine all of those muscles in a spasm and hurting or burning.
It is not "psychosomatic" or someone "acting up", nor is it "nerves".
People with CFS or Fibromyalgia, ME, or Yuppie Flu, to give just a few of the names used to describe it, really suffer. They suffer mentally and physically as normal medical tests show there is nothing wrong and everything is absolutely normal. Pain cannot be measured and they are not even given the confort of a proper pain management program.
How do I know? I have had it for the last seven years and it has gone progresssively worse. Most of the time I have to be "resting" and just going out to get groceries is a mission. I do it on a "good day", when I can manage to drive the couple of blocks to the shops very, very carefully.
I know a lot of people have my problem. I am living on my own which makes it so much more difficult. I don't like to have to ask for help. It is also not easy to get a companion when you are not very healthy. So one has to take life as it comes, days by day. Hour by hour.
If you have CFS you have probably been to every (most of the times unsympathetic) doctor, had every test imaginable, tried all sorts of therapies and are still left wondering about your problem and why nothing is helping.
In March there was a demonstration in France by people with CFS to have it declared a disability, because it is a disability.
FMS is a chronic illness. Not just a form of muscular rheumatism, it's actually a neurotransmitter dysfunction. (Neurotransmitters are what the brain uses to tell the body what to do) We think 4% or more of all people have FMS.
One symptom is dysfunctional sleep called the alpha delta sleep anomaly. As soon as people with FMS reach the deep level sleep, alpha brain waves intrude and jolt them back to shallow sleep. Not only are they denied refreshing sleep, but delta level is when the body does its repair work to the muscles, and chemical replenishment.
If people with FMS are immobile at any time, such as during travel, or sitting in a meeting, their muscles get rigid and painful. Morning stiffness can be severe.
FMS symptoms fluctuate from hour to hour and day to day, and often worsen with changes in barometric pressure. It's no wonder that FMS is one of the most mis-diagnosed illnesses. Doctors often refer FMS patients to psychologists or psychiatrists, and yet recent studies show that psychologically, FMS patients have about the same amount of abnormal psychology as Rheumatoid Arthritis patients.
An editorial in the Journal of the American Medical Association in 1987 stated that "FMS, a disease which may have occupied five minutes of time in medical school really exists and is a major cause of morbidity and disability." People with FMS have a history of being misunderstood and doubted. Research is showing that people with FMS have defects in the neuroregulatory system, especially the neurotransmitters. They have low growth hormone, which is involved with muscle repair.
Some researchers think that the key problem is a CNS abnormality upstream of the spinal cord. The FMS body is an engine idling at very low power, rather than a normal one. Most FMS patients have memory and cognitive impairments. In FMS there is an abnormal production of neurotransmitters such as serotonin, melatonin, norepinephrine, dopamine, and other chemicals which help control pain, mood, sleep and the immune system. It looks like there is a genetic predisposition. Often there has been a trigger event, such as an accident or a great emotional shock.
An American College of Rheumatology study in 1992 found the the impact of FMS on your life is as bad, or worse , than Rheumatoid Arthritis. They listed one major factor in this as "clinician bias". FMS patients don't look sick, so they are often victimized by clinicians, family, and friends, leaving them with self doubt, guilt, and loss of self-esteem.
FMS patients have 3 times the normal amount of substance P in their spinal fluid. Substance P tells the body how much pain it feels. They also have more pain receptors. They are hypersensitive to everything .. sort of like the "Princess and the Pea" in nursery stories. Little things that others take for granted, like wringing out a wash cloth, or writing a letter, become pain endurance sessions. A comparative analysis in the Journal of Rheumatology this year found that the quality of life for women with FMS is worse than for those who have Rheumatoid Arthritis, osteroarthritis, chronic obstructive pulmonary disease, or insulin-dependent diabetes.
You life changes, there is not much of a social life as you never know how you are going to be from one moment to the next. One day you can go to the shops and the next you are on your bed, unable to move with a burning pain (it feels like thousands of hot needles) in all of your muscles. Or the legs hurt and suddenly you cannot take more than a few steps. Nobody can understand it fully unless they go through it.
The next day again you are so weak you can hardly walk to the kitchen and you feel you could quite happily die and not take another day of this. (The numer of suicide cases in patient with CFS is very high)
At times it's like running a fever of 102, yet the temperature is normal! Or feeling dizzy all of a sudden with a brain stuffed with cotton wool and being unable to think.
And little or no sleep. Sleep only comes with some help from a sleeping pill.
You lose friends, as they don't understand why you look so well yet you are "too tired to go out" . Eventually they get annoyed with you always cancelling engagements and some, unfortunately, take it personally.
It is like a constant torture as one day you are "almost" normal for a few hours and your hope goes up, only to be taken away the next day when the pain takes over your life.
Now what? You ask.
The help out there is limited. There are no cures.
Believe me I have bought every cure available on the internet so far. Spent $$$$$$$$ and no results. Just more shattered hope.
I will direct you to a website that will explain, better than I could ever do, causes and symptoms of fibromyalgia and some of the treatments used overseas. I have subscribed to the newsletter that gives hint in pain management. I must say that so far I have found minimal relief, but some hints are good and they might help you, as everyone is different.
As for holistic treatments some people have found relief in massages, chiropractors, osteopath etc.
I personally found that eventually I got to the point where manipulations and deep massages were hurting me more.
I have also tried vitamins drips. They do work for some, they were not the answer for me.
I have tried the new drug Lyrica, I had a very adverse reaction to it and hallucinated, but I am told it has helped in some cases. Cymbalta took my blood pressure right down and I fainted several times. I was given Trepiline and it made me really ill. But maybe one of these drugs could work for you.
On the Holistic side my advice is:
Do change your diet. It helps. Eat ealthy. Cut down on your sugar intake, and anything made with flour. I eat only chicken, fish, vegetables and fruit. Eat Gluten free and Dairy free.
Have vitb12 and bco injections, they do pick you up.
Meditation helps, learn to meditate, it will improve your life in many ways. This is really a big one, so don't disregard it.
Don't overdo it when you feel you have some energy
If you can do some form of exercise, do it. If exercising make you feel worse then don't push it. Everybody is different
back to main page