David's Story

My experience with FM started with neck and shoulder symptoms at age 15. Initially, I was diagnosed with “growing pains” and later with juvenile rheumatoid arthritis (JRA). By age 20, the pain spread and involved my low back. By age 30, my whole body was in chronic pain. My joints were unaffected so the diagnosis of JRA was ruled out. At that point, there was no name for my condition. Without a diagnosis, I went through years of unnecessary treatments, spent thousands of medical dollars, and argued with my insurance companies to cover doctors’ bills. I saw between 30-40 doctors and no two agreed on an effective therapy program. Some of the therapies I tried included nonsteroidal anti-inflammatory drugs (NSAIDs), pain killers, hypnosis, biofeedback, TENS, exercise programs, myotherapy, acupuncture, vitamin therapy, yoga, Rolfing, a TMJ mouth brace, body cast for six months, chiropractic adjustments, trigger point injections, epidural nerve blocks, ultrasound, electrical stimulation, physical therapy, and, of course, psychiatric counseling. Diagnostic tests included CAT scans, MRIs, blood tests, and over 100 x-rays.

Finally, a doctor at the Lahey Clinic in Boston told me I had fibrositis (an early name for FM), and advised me to find a job with little stress and no physical requirements. At that time in my job as a tool and die maker, I worked 50-hour weeks, always under a contracting deadline. I was too young to retire so I went back to work. By age 37, with great reluctance, I had to stop a career I had spent 15 years exacting. I was in my prime asking myself what the rest of my life would be like if I had to live with this kind of pain. 

My story is not unlike so many others with FM. I thought I had the perfect life. I married my high school sweetheart, bought a home, started a family, and owned my own tool and die business by age 29. I was a good father, husband and provider. Successful at my job, I pushed myself through years of growing pain. Then in 1984, after six months in a body cast, I could not go on. Life took a radical change for the worse. I could no longer sit or stand for any prolonged period of time without unremitting pain. Unable to understand my condition, my employer thought I could work if I wanted to. When I could not, he cancelled my insurance. My wife of 17 years was not able to cope with the changes and left me. Within the next 18 months, I lost everything – my family, house, and car. I ended up cashing in my life insurance policy and selling my stocks just to get by. 

I came very close to ending up alone on the street before turning to local social services. A worker there heard my story and went out of his way to help me obtain Social Security disability. Life began to take a turn for the better. In 1985, I remarried and my children came back to live with me. Because of my sensitivity to the cold and damp weather of New England, I moved to Arizona where I live today. 

Although I am still in pain every day, I consider myself one of the lucky ones with FM. Despite all the wrong diagnoses, the ineffective treatments, and given all the rejection by doctors, family, coworkers, and friends who thought there was “nothing wrong with me” because I “looked fine”, I survived. There are still some who do not and will not ever know what I go through on a daily basis living with FM. Am I telling you my story to gain sympathy for me or others with FM? No! I want you and everyone to know to what lengths a FM person goes through to receive relief and a diagnosis for his/her symptoms. 

We are struck with an invisible syndrome that makes us look like hypochondriacs, malingerers, psychosomatically ill, or asking for a handout. Nothing could be further from the truth! Given the choice, we would rather work than accept disability, be free from the pain, and certainly would choose to keep our lives intact than have them turned upside down by fibromyalgia.

In March of 1992, my wife, Margy, and I started a support group for people with FM. We wanted to educate as many people as we could about fibromyalgia. Our group, along with three others in the Phoenix, Arizona area, grew to over 1,000 members in a little over 18 months. We held our first Arizona FM symposium in March of 1994. Since the criteria for the diagnosis of fibromyalgia was written by the American College of Rheumatology in 1990, diagnosis numbers are going up. However, research is still in its infancy. The medical profession is still in disagreement as to the cause and treatment of fibromyalgia.