Fibromyalgia Syndrome Survival and Support

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   Let's begin by discovering just what Fibromyalgia Syndrome is......
Fibromyalgia (which at this site we'll call FM for short)is a disease which affects the muscles, ligaments and tendons. The reason it is termed a syndrome is because the illness is made up of a myriad of other illnesses or problems that could be experienced by themselves. For reasons as of yet unknown FM affects far more women than men; the ratio being approx. 80:20.

   People with FM hurt all over. They feel pain almost everywhere; in the arms, legs, chest, back, feet and even in the cheeks and jaws. No one knows the exact cause of the pain, although studies have found FM sufferers seem to have a higher than normal level of Substance P, a pain transmitter, in the spinal fluid. It is also known that people with FM have very low levels of Serotonin, a chemical in the brain which, among other things, helps moderate pain. Some research has also found an insufficient oxygen supply to the affected muscles, ligaments and tendons.

   Most people with FM also suffer from sleep disorders and/or chronic insomnia, which contributes to the pain and extreme fatigue, that accompanies FM. They never seem to reach that deep restorative stage of sleep that allows the body to repair itself of daily wear and tear.

    People with FM cannot sit in one position for longer than twenty minutes or so without becoming stiff, and stiffness in the morning can take two to three hours to wear off.

   Depression is not the cause of FM, nor is it a part of FM itself, but depression can be brought on by the hassles of living with and trying to cope with the syndrome, just as with any other chronic illness.

   There are a very wide range of other conditions that are part and parcel of FM. As stated earlier, that is why FM is referred to as a "syndrome", because there are many health problems which, although they may seem unrelated are actually a part of the FM spectrum.

These conditions include:
  • irritable bowel/bladder syndrome.
  • numbness/tingling ...especially in, but not limited to, the hands and feet. (Raynaud's Syndrome)
  • migraine and ordinary headaches.
  • itching skin, usually without a rash.
  • crawling sensations under the skin (like bugs crawling)
  • dizziness, sometimes accompanied by vertigo.
  • a blurring of vision.. like "looking at the world through a glass of water".
  • muscle spasms.
  • bruxism (teeth grinding).
  • sore throats.
  • tender and swollen lymph nodes.
  • increased sensitivity to environmental factors such as weather changes, pollution and odours.
  • memory blanks.
  • word mix-ups.
  • confusion.
  • trouble concentrating.
  • panic attacks.
  • weight gain in some, or weight loss in others.
  • feeling disoriented or dizzy when looking at certain patterns, such as hounds-tooth checks or stripes.
  • an inability of the body to regulate body temperature....which makes you feel cold when it's warm or vice versa.
  • hot feet...feels like standing barefoot on hot pavement.
  • facial flushing
  • sudden awakening from sleep....feeling like you were startled awake.
  • extreme fatigue...worsened by insomnia.
  • pain and/or weakness in muscles, ligaments and tendons.
  • Temporomandibular Joint Dysfunction (TMJ, Jaw joint)
  • chest pains sometimes severe enough to mimic a heart attack
  • painful periods

   As you can see , the list is long. For most sufferers of FM all of the above symptoms tend to come and go, sometimes all being experienced at once or at times only a few being present. FM is also known to have periods of "remission" when the patient may feel well for days, weeks or even months, but the syndrome very rarely ever goes away and stays away. In fact I have yet to meet anyone for whom FM has truly "gone away".

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   Most people with FM can generally pinpoint a particular time in their lives when they first began to suffer the symptoms associated with the syndrome. FM can be triggered (but not caused) in susceptible individuals by things such as an auto accident, childbirth, an injury, a severe viral illness, or major surgery. Research reflects some sort of genetic predisposition. Studies have found that children born to someone with FM have a 50% chance of also contracting it.


   So far the only forms of treatment for FM are those which help to alleviate symptoms. Medications can be perscribed to improve sleep and reduce pain. Moderate exercise can be very beneficial, helping to strengthen weak muscles and walking is one excellent form of exercise for the FM patient. Cervical pillows can be helpful as well as therapeutic massage and relaxation techniques such as biofeedback.


   There is no blood test yet in use to aid in the diagnosis of FM. Your doctor must make the diagnosis based on your symptoms and on the presence of at least eleven of the eighteen known FM TENDER POINTS. These tender points are known areas on the FM patient's body, which, when pressure is applied, will cause pain to be felt momentarily. The patient may not even be aware of these Tender Points until the attending physician "finds" them.
Your doctor will also want to perform other tests and blood work in order to rule out other diseases which can mimic FM. This may seem like a never-ending battery of tests, but the end result is well worth it.

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   Twenty-six years ago a most wonderful and happy event took place in our lives. My husband and I had a beautiful baby girl. She had been waited for a very long time and our joy knew no bounds.

   As the months passed and I didn't seem to be bouncing back from this pregnancy the way I thought I should, I went to our family doctor with my long list of complaints. He told me not to worry. He said that my age with this, my third pregnancy, was probably a factor in my slow recovery. I had been in my early twenties with my first two babies, but this baby had come in my early thirties. It sounded logical to me, so I went home and continued to suffer in silence.

   Almost from the very day my sweet baby was born, I had begun to feel the deepest, most extreme fatigue I'd ever felt in my life. My baby was very good about sleeping through the night, right from the start. Problem was, I was the one who couldn't sleep. At first I chalked it up to hormones and excitement, but by the six month mark I knew something was terribly wrong. I'd lie awake most of the night every night, but sometimes during the day I'd fall asleep while in the in the middle of doing something. A couple of times I fell asleep while feeding my baby, then woke up with a start, terrified and so glad that she hadn't fallen out of my arms while I slept.

   By this time the pain had also set in and at times my arms were so painful that it was excruciating just to hold my baby or my hips were too painful to even walk. Migraine headaches also began to take over my life, although at the time I didn't know that was what they were. I'd see flashing lights or smell, of all things, roses, and I'd know the pain was coming.

   Sometimes I spent several days in bed while my husband cared for the baby alone. I began to think of a brain tumour as a possibility. My hands could no longer do the needlework I loved to do because in a few short minutes they would become so numb that I couldn't even feel the needle. Dizziness was also a problem, often occurring when I was carrying the baby, so I began to worry about the baby being harmed if I should pass right out some day. Many days I spent living as if in a fog, forgetting to do chores or starting to redo chores I'd already done and forgotten I had. I forgot important dates, such as relatives' birthdays, something I'd NEVER done before.

   Finally, tail between my legs I went back to the doctor and told him everything. He looked at me as if I were a nut, and I could tell that he wasn't taking me very seriously, although he did have x-rays done. The x-rays showed nothing at that time, and so he basically told me it was "all in my head". That was enough to make me so angry that I began to see a new doctor. My new doctor was very sympathetic and understanding, but after having done a battery of tests and more x-rays, including a CAT scan of my brain, he seemed to come to the same conclusion as my previous doctor. On to doctor number three. After the same tests and the same old x-rays being done once again, this doctor decided that mine was perhaps a case for a specialist to explore.

   That is when I was sent to another city to see a neurologist. The neurologist was very quick to recognize the migraine headaches and I was at least relieved to know what the headaches were, but after several subsequent visits he finally told me something that chilled me to the bone. He told me that , in all likelihood, I was suffering the beginning stages of Multiple Sclerosis, a disease that, in my understanding, would leave me in a wheelchair and eventually cause my death. For several years after I lived with the fear of this, but my family doctor began to question the diagnosis and so did I. My symptoms should have shown signs of becoming much worse by now, but instead were remaining about the same. Back to the neurologist I went. After examining me again he now concluded that he had been wrong in his diagnosis and suggested that I discuss with my GP the possibility of seeing a Rheumatologist instead.

   It took a couple of more years to convince my GP, however, that this was necessary, since the x-rays had shown no signs of rheumatoid arthritis. There was some slight evidence of osteoarthritis in my hip though, so he finally relented and set up an appointment with a well-known rheumatologist in my area.

   It was nearly eight years after my daughter was born that I walked into the rheumatologist's office. At my GP's suggestion I'd written every single symptom I had, no matter how trivial, down on a piece of paper for the specialist to read. She read the paper thoroughly and asked me questions about the previous blood tests and x-rays I'd had done. Lastly she began to press on different areas of my body, such as the top of my shoulders, the insides of my knees, asking if it hurt. Of course every area she pressed on hurt. Boy did they hurt!!

   She told me to get dressed and return to the office area when I was done. I sat down across from her, expectantly...hoping. She looked at me and said the sweetest words I'd heard in years. "I know what you have". I just stared at her. I couldn't speak. After she explained everything to me, I knew that she was right. This doctor had finally figured out what I had. The best part was knowing that I wasn't going to die. I would see my children grow up after all.

   I have quickly learned that there is really not very much that Drs. can do for those of us with FM. They can prescribe medications that may (or may not) help us with symptoms, but other than that, it is up to us to try to help ourselves. Some of the ways we can do that ?....We can try to avoid stressful situations as much as possible, and try to NEVER overdo ANYTHING. This may mean we sometimes have to say NO when others want our time. The "N" word was very hard for me at first, but it has gotten easier with time. We must rest when our bodies are telling us we need it, and get regular (but gentle) exercise. Lastly...and this one sounds hokey, I know, but really it isn't...take the time to enjoy the little things in life, such as laughter, a good book, friends, children and stopping to smell the roses...literally !

   With careful management and regular exercise I now feel pretty good most of the time. I still live with pain every day to greater or lesser extents, and I still have flareups, but just having the knowledge of how to cope is a wonderful thing, and with a diagnosis my family is now much more understanding of my forgetfulness. Best of one thinks I'm crazy !


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The words to an inspirational song that is near and dear to my heart :

You'll Never Walk Alone

When you walk through the storm
Hold your head up high
And don't be afraid of the dark.
At the end of the storm
Is a golden sky
And the sweet silver song of a choir.

Walk on through the wind.
Walk on through the rain.
Though your dreams be tossed and blown.
Walk on, walk on, with hope in your heart
And you'll never walk alone.
No, you'll never walk alone.

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by Charmaine V.
Last updated August 7, 2008.