Fibromyalgia is a chronic (long-lasting) disorder that causes pain and tenderness throughout the body, as well as fatigue and trouble sleeping. Scientists do not fully understand what causes it, but people with the disorder have a heightened sensitivity to pain.
There is no cure for fibromyalgia, but doctors and other healthcare providers can help manage and treat the symptoms. Treatment typically involves a combination of exercise or other movement therapies, psychological and behavioral therapy, and medications.
Diagnosed with Fibromyalgia
I’m 51 years old. I’m a wife, mother, friend, career woman—and I have fibromyalgia. A chronic pain syndrome whose symptoms overlap with many other diseases. For me, living with constant pain started over 30 years ago. I can’t pinpoint it to a specific time or event in my life. Growing up, I played softball and volleyball, I bowled, went roller skating. And enjoyed an occasional game of Kick the Can (until we got thrown out of the neighbors’ yards that is!).
It was during softball practice in my late teens that I first noticed the pain. Since I was also in bowling and volleyball leagues, I figured I was just overdoing it. But despite ice, rest, and physical therapy, the pain didn’t subside — and it burned right between the shoulder blades.
There were (and still are) days it hurt just to hold my head up. My range of movement became hindered from tightening muscles, especially in the neck. Soon I began experiencing frequent migraines and chest pain that mimicked that of a heart attack. I had trouble typing because of pain in my hands. And it was difficult to climb the stairs because of knee pain. In addition to this, my memory seemed to be failing. I couldn’t fall asleep at night without shaking my right foot and I couldn’t tolerate anything cold. One dip of a toe in the ocean causes instant pain in my foot. Rinsing lettuce does the same to my hands.
I’d venture to guess that most of you who just read the previous paragraph are thinking that there’s no way all that could be going on at once. That it has to be an exaggeration or simply all in my head. The term ‘hypochondriac’ probably comes to mind. Well, fibromyalgia isn’t a myth, and it isn’t a made up diagnosis. It’s a syndrome that can be debilitating. And is recognized as a disability by the Federal Government and Social Security Administration. Even though someone living with fibromyalgia doesn’t actually look sick.
The Tough Journey to a Diagnosis
I was in my 40s before I received an official diagnosis of fibromyalgia. Although I wouldn’t wish it upon anyone, the diagnosis brought relief — at least mentally. I saw various physicians in a multitude of disciplines — general medicine, dentistry, hand specialists, sports medicine, neurology, rheumatology, physical therapy — and the list goes on. I’ve worn back braces, neck braces, wrist braces and knee braces. I’ve had special appliances made to treat pain in my jaw caused by temporomandibular joint disorder (TMJD). Infact I’ve had my ankles and elbows wrapped, my shoulders taped up and I’ve spent years in and out of physical therapy.
Over the years I’ve been prescribed a litany of medications for inflammation, headaches, migraines, rheumatoid arthritis, pain, premenstrual dysphoric disorder (PMDD), anxiety and for sleeping. I was told I had Raynaud’s disease, carpal tunnel syndrome (for which I was operated on), restless legs syndrome and tennis elbow. The problem was that each doctor or therapist was treating a single symptom, not looking at them holistically.
The Painful Lack of Support
But what’s worse than the physical pain is the lack of understanding and compassion from those around you. I’m not talking about strangers. Not even talking about casual acquaintances. I’m talking about family and friends. In my case, their lack of support was probably because they didn’t understand the condition. For years on end, I pushed through the pain and engaged in activities, kept appointments, went to the office and flew around the country on business trips even when I knew it would cause a flare-up that could last up to a week. However, doing all of these things set an expectation that I could, so my friends and family were confused by my illness.
Fortunately, I was selected to participate in several fibromyalgia studies at the University of Medicine and Dentistry of New Jersey (UMDNJ) and Robert Wood Johnson Medical School (RWJMS). One was the use of biofeedback, and the other the use of imagery to control pain. But what I found most effective was seeing a psychologist twice a week for almost a year to treat the depression that almost always accompanies fibromyalgia. This study was pivotal in understanding the self-imposed pressure that I put on myself every day. It helped me to the read the reactions of those around me and taught me how to fine tune my responses.
Living with Fibromyalgia
Today I’m better able to manage my life and my pain. I’ve accepted the fact that I can’t be all things to all people and I’m comfortable with who I am. I’ve also learned that I have the right to say “no” — and I can embrace saying that without any guilt. Learning to say “no” has taken a huge weight off my shoulders, which has also helped reduce that burning pain. I now know that “fibro fog” inhibits my ability to process short-term memory into long-term memory and is why I sometimes forget names or struggle to find words during a presentation.
To deal with my condition, I see a pain management doctor regularly and take several daily medications to treat nerve pain, depression, a sleeping disorder and restless legs syndrome. But I also make sure that I hit the gym frequently to stay healthy and get extra energy to help keep up with my family as well as running my own business on top of my day job. I’m also active in our church.
But there are still those days when I need to just lie on the couch and do absolutely nothing. And you know what? I have every right to.
