Today is National Fibromyalgia Day. Why should you care? Here are a few statistics from The National Fibromyalgia Association:
Fibromyalgia is one of the most common chronic pain conditions. The disorder affects an estimated 10 million people in the U.S. and an estimated 3-6% of the world population. While it is most prevalent in women —75-90 percent of the people who have FM are women —it also occurs in men and children of all ethnic groups. The disorder is often seen in families, among siblings or mothers and their children. The diagnosis is usually made between the ages of 20 to 50 years, but the incidence rises with age so that by age 80, approximately 8% of adults meet the American College of Rheumatology classification of fibromyalgia.
More than likely you know several people who battle with Fibromyalgia or Chronic Fatigue Syndrome every day. They look just like you. They work beside you. They cart their children to the same soccer practices you do. The difference is they are in a constant state of physical pain with a myriad of debilitating symptoms.
Seven years ago, I was diagnosed with Fibromyalgia with overlapping Myofascial Pain Disease. Big words which mean – you hurt endlessly in every part of your body. I went from being “super woman” who ran a tight ship at home, worked a full-time job and was able to still have energy to spare; to a young woman who could barely move most days in my new “lead suit”. The heaviness of my body was overwhelming; the horrific four day long migraines which wouldn’t break without heavy duty steroids; would it be insomnia tonight or just the inability to go into a restful sleep; the excruciating first steps of the morning or the inability to grip on my toothbrush; and let’s not forget the fibro fog which left me feeling like I had suffered brain damage. Simple words escaped me as I looked at familiar objects but could not tell you what they were. Or better yet, the days when my brain was sharp and trapped inside of the prison of my non-functional body. And, let’s not leave out the random moments of over excited nerves that for no apparent reason are on fire. You not only want to peel your clothes off you are in so much pain and if you could get out of your own skin you would.
My life changed after the day of diagnosis. Everyone says to lifestyle adjust but you have no idea what that means, especially if you are a type-A perfectionist. I did however learn that the dishes could sit for a few days and no one will keel over from a few meals of only cereal. Important to also note that I battled with thyroid disease as well which exacerbates fibro symptoms even further! Three years ago my disease spiraled out of control after a physical attack by my husband. No one rightly knows what to do with fibromyalgia and a critical case is even more out of a doctor’s comfort zone. As it so happens, I was seated across from the doctor struggling to even take a breath as fatigue and tense muscles gripped my lungs. He asked me to not return and wished me the best of luck as all I wanted at that moment was an oxygen tank and a measure of compassion. The physical trauma led to the Myofascial Pain Disease taking the forefront as every muscle grouping went into knots that would not release. Think of that time you pulled your hamstring. Remember the knot and the pain with it? Well, that is what MPS is like but all over your body.
I became reclusive and sedentary. If I wasn’t at work, I was on my couch wishing to die. There are moments when the peacefulness of death is welcome over the constant agony we suffer. The symptoms mount up against you like an impassable obstacle. It is hard to find sympathy and support from even your family let alone friends or strangers. No one knows what to say or even what you are talking about, I mean you “don’t look sick”.
Become more aware. Be supportive. Know this is not “all in our heads”. Research is finding amazing links that will help uncover more of the mystery. There is no medical cure and very little treatment that helps. I no longer struggle with Fibromyalgia or MPS and look forward to my new lease on life! Find someone to support and be kind to today!