Fibromyalgia
The FAQs and More
What is Fibromyalgia?
Fibromyalgia (pronounced fy-bro-my-AL-ja), in a nutshell, is a chronic pain disorder [yes, it is painful and chronic meaning it lasts a long time] that is a syndrome, not a disease. There are no tests which can confirm the collection of symptoms which define fibromyalgia, but are only confirmed in the exclusion of other diseases. No one knows how it starts, what causes it, or the long-term effects. It is not fatal, but sufferers may have days when they wish it was. This is not something made up, in one's mind, or a case of hypochondriac gone amuck. There is no cure, only treatment for the various medical problems related to the syndrome. It affects people physically, mentally and socially. It can be extremely debilitating and interfere with basic daily activities. It is a chronic disability (don't count on disability benefits in the US, 80% of the cases are rejected, but you can get a handicap parking plate) which can be managed and in some cases may go into remission, but for many, it may take years to find a plan to manage fibromyalgia.
It is characterized by chronic pain all over the four quadrants of the body (multiple tender points above and below the waist and to the left and right). Those with fibromyalgia have abnormal pain responses to which there is not usually inflammation that can be measured in standard ANA and/or C - reactive protein lab tests. There are sleep disturbances, fatigue and depression associated with this syndrome, in part due to the pain making it hard to sleep which make a person tired and depressed that further cycle the lack of sleep making tiredness and depression worse. The depression can also be factored in because of the frustration in lack of diagnosis, lack of people believing there is anything wrong, having to run through many different types of doctors and tests, and then realizing the label basically means anything else wrong with the patient will always be chalked up to the syndrome without going any further.
Not all persons diagnosed with fibromyalgia have the same symptoms or range of severity, but they all have widespread pain that has lasted longer than 3 months which cannot be explained by any other factor. Tiredness, sleep disturbance and depression are also very common. Some will have other symptoms that others will not have such as: Raynaud's syndrome (secondary), irritable bowel syndrome, overactive bladder, headaches, migraines, restless legs syndrome, impaired memory ("fibro-fog"), trouble concentrating, skin sensitivity, rashes, dry eyes and mouth, anxiety, ringing in the ears, dizziness, vision problems, neurological symptoms (seizures, twitching, numbness/weakness in limbs), arthritic-type stiffness (in the morning, before bed, and when still too long), and impaired coordination.
When one presents to the doctor with the vague symptoms of pain, fatigue and other symptoms, usually they will run numerous blood tests which can show if there is inflammation in the body, abnormal white blood cell counts, anemia, or vitamin deficiencies. If the tests are negative or inconclusive, but the symptoms continue, fibromyalgia is usually flagged so more detailed tests can be run to rule other things out. Depending on the doctor(s) or the patient whom might become discouraged, the diagnosis can be made anywhere from a few months to a few years.
The classic test given to "prove" fibromyalgia is feeling pain in 11 out of the 18 key pain points when pressure is applied. The problem is not everyone feels the specific pain in enough of those points, but can feel pain in points not associated with the disease and may or may not be classified with fibromyalgia at the discretion of the doctor.
If you are uncertain of the results, get a second or even a third opinion. This syndrome mimics so many different diseases and syndromes which might be overlooked (Lyme disease, multiple chemical sensitivity, myofascial pain syndrome, chronic fatigue syndrome, and major depression all have been mistaken for fibromyalgia) or the tests may not be sensitive to pick it up.
Also, fibromyalgia can be primary (nothing else wrong, just fibro) or secondary (one has fibro and something else wrong such as rheumatoid arthritis, lupus, osteoarthritis, etc.) Even if with fibromyalgia, when other symptoms show up, one cannot not assume it is just the fibro because this syndrome can open one up for other ailments; get it checked out.
I am not a doctor, just a person who has been diagnosed with this syndrome. All of this information detailed here is from my research on the subject and my own experience. Always seek medical advice from a professional who can physically see you and determine if you have this problem. A family doctor, internist, neurologist, or rheumatologist can all be qualified to diagnose fibromyalgia, but depending on your insurance or the policy of the doctor, they may refer you to a specialist or defer to refer you to a specialist because fibromyalgia may or may not be something a particular neurologist or rheumatologist will work with. Don't expect to be diagnosed in one or two visits because it will take at the very least several visits spread out over time to rule other things out.
This section is for those who have been recently diagnosed with fibromyalgia and those interested in learning more about it to provide a better understanding of this chronic pain disorder which affects millions of people worldwide (2-5%).
Here are quick links about fibromyalgia: