My experience with Fibromyalgia (FM) is linked to my experience with Chronic Fatigue Syndrome (CFS). I first experienced the extreme level of fatigue associated with CFS in 1992. Along with the fatigue came pain. It often seemed pain and fatigue were taking turns tormenting me. If I was capable of functioning outside my bed, I was in pain so intense that aspirin brought no relief. If the pain subsided, I couldn’t move from my bed.
The days that I could not move far from my sickbed turned into months and years. I went from doctor to doctor, finally being diagnosed with Epstein-Barr Virus (EBV) and eventually with CFS. I was beginning to understand I needed something more than modern medical treatment. By chance I saw an article in the newspaper about a psychologist who counseled patients with CFS. I made an appointment with her—which turned into several years of appointments. She directed me to what literature was available on the subject in the nineties. It was from her I first learned of FM, with the pain points being a separate symptom from the chronic fatigue.
The psychologist provided me with a chart showing the FM pain points, which were similar to the pain that accompanied my CFS. However, my questions about the difference (or similarity) between FM and CFS produced vague responses. About the best I could get was that FM cases tended to be handled by rheumatologists, who specialize in rheumatism, but it was not the same as rheumatism. Like CFS it had neither an agreed-on cause nor a known cure.
For me what my ailments were called wasn’t as important as what could be done about them. I looked into osteopathy, acupuncture, homeopathy, and chiropractic services. Incredibly a random sales call provided the next break in my medical case, a road to an FM diagnosis. A local chiropractor’s office called and told me about a special they were offering: a free massage along with an initial visit. I took up the offer.
The chiropractor’s office turned out to be a good match for providing me with relief. I had treatment there for several years. I was put on a program that combined physical therapy, chiropractic adjustments—and massages, too.
However, being on that regime was not what made my time there a turning point. The chiropractic office was unusual in that, at the time I began treatment, the services of an MD were part of the initial evaluation for new patients. I happened to be one of them.
I told the on-site MD about my CFS. He reviewed my history of medical symptoms, poked and prodded my painful and tender points, and asked, “Have you ever heard of another disease, called fibromyalgia?”
Of course I had because by that time I’d been spending years reading up on both CFS and FM, to say nothing of what the psychologist and other medical providers had explained.
To this doctor, my painful and tender points were the biggest concern, not the extreme fatigue, which by that time had declined to a more manageable level. Therefore he diagnosed my complaint as FM. To him the CFS was secondary.
He prescribed guaifenesin, which I took for an extended period of time, and personally found it to have a positive effect on both the FM pain and the CFS. Guaifenesin is not a painkiller but an expectorant. I never clearly understood how it worked to relieve my pain but the fact is, it made my FM (and CFS) symptoms more manageable.
Shortly after I became a patient at that chiropractic clinic, the doctor and clinic parted ways. He was not replaced. I could not convince other doctors (or chiropractors) to continue the course of treatment that included guaifenesin.
When I now speak to medical professionals (or anyone else who asks), I often explain my chronic health problems as, I’ve been diagnosed with FM, because I experience the pain points associated with it, but I was originally diagnosed with CFS.
The primary way I now manage my FM symptoms is through over-the-counter painkillers such as Aleve.
To me it’s not what medical professionals label it. It’s about managing it. I understand how, like CFS, FM is a chronic condition. A disease the patient recovers from, such as a cold or flu, is acute. Symptoms that never go away are chronic—including the pain of FM as well as the fatigue of CFS.