May is Fibromyalgia Month, and May 12th is Fibromyalgia Awareness Day, the day chosen to raise awareness and knowledge of this debilitating chronic illness.
Statistics vary-depending on who you ask, and many individuals are misdiagnosed… sometimes for years, but it is believed 5-7 million people suffer from Fibromyalgia. The National Fibromyalgia Syndrome Association believes the numbers are as high as 12 million to 20 million.
What is Fibromyalgia? The word “fibromyalgia” is a combination of Greek and Latin that essentially means fibrous tissue/muscle pain. Therefore, the very meaning of the word says volumes about the condition itself, with the keyword being “pain.” The Mayo Clinic provides a very broad summary of the symptoms, which include:
- Widespread pain – this is typically characterized by a dull ache that lasts for at least three months. “Widespread” from a medical perspective means that the pain and/or tenderness is on both sides of the body and is also both above and below the waist.
- Fatigue – If a patient with fibromyalgia can sleep at night (insomnia is very common), they frequently wake during sleeping hours due to pain. No sleep or poor sleep causes fatigue during waking hours and can make it difficult to function and focus. Furthermore, fibromyalgia patients also have other disorders such as sleep apnea or restless leg syndrome which are additional reasons for waking frequently throughout the night.
- “Fibro fog” – Cognitive impairments such as difficulty concentrating on mental tasks, feeling “hazy,” or the inability to think clearly.
- Other problems – And here’s where it gets crazy. The list of symptoms that fall into the category of “other” are varied, but include conditions such as headaches, abdominal cramping, anxiety, depression, burning sensations either on the skin or from within, IBS, intense itching, muscle and joint pain, as well as hypersensitivity to pain, medications, cold weather, foods, physical touch, and more. Let’s not forget random sensations of cold and tingling, mood swings, abnormally painful menstruation, joint stiffness, a feeling of pins and needles, muscle spasms, and delayed onset muscle soreness.
Researchers claim that fibromyalgia is far more common in women than men. However, as the criteria have ceased focusing on the number of tender points a patient has, more men are being diagnosed as well. In fact, fibromyalgia has not been recognized as an actual problem for all that long in the United States. Thankfully, pharmaceuticals have been approved and used for several years now that are specifically directed to fibro patients, with varying results.
Diagnosing it has been tough because it’s so difficult to pin-point a problem due to overlapping symptoms and the similarity of fibromyalgia to other conditions such as rheumatoid arthritis. That is to say, many people have depression, or IBS, or muscle spasms, or fatigue, or joint stiffness.
This makes diagnosis difficult! I was misdiagnosed. Three of my sisters AND our mother were misdiagnosed. My two older sisters and I also have osteoarthritis (joint replacement queens!), but our younger sister has Lupus and our mother has Scleroderma – and the younger sister and mom both have Raynaud’s Syndrome and implanted defibrillators. Mom has a pacemaker too.
Obviously, there is a genetic connection… it just hasn’t been discovered yet. I’m personally curious about the benefits of finding the genetic link because in my family’s case – five members have Fibromyalgia, and our symptoms, pain issues, and even treatment plans are nothing alike. This can also be said of any of ten individuals with Fibromyalgia… or a hundred.
Perhaps the biggest obstacle Fibro sufferers face is we do not look sick, and this is something we have in common with individuals who live with other chronic illnesses like Multiple Sclerosis and Chronic Fatigue Syndrome. Doctors, family, friends and coworkers can all be skeptical and unsupportive simply because you do not look as bad as you SAY you feel.
It’s a struggle.
Things are improving… rapidly in some cases. Where Fibromyalgia was considered a psychological condition just a few short years ago, it’s now recognized for the neurasthenic musculoskeletal pain syndrome it is. This is encouraging. Doctors and healthcare providers are becoming more aware AND informed. This is major. Fibro patients are no longer considered hypochondriacs or fakers and brushed aside with a bottle of pills. There is no cure for Fibromyalgia. But different courses of treatment are being found successful for some patients.
Think you may have been misdiagnosed, or are suffering in silence? Answer this fibromyalgia questionnaire and share the results with your doctor. Knowledge is power and we all need to be better informed.
Fibromyalgia is classified as a rheumatologic neurologic disease and the best doctor to diagnose it is a rheumatologist… but primary care physicians can be successful in diagnosing and treating Fibromyalgia also.
The National Fibromyalgia Association is a great resource in helping individuals with every aspect of their condition including community resources and finding a fibro-knowledgeable physician in your area.