Looking over some files from 2017 I found this personal account of my experience with Fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS). I believe it was written for one of those rare assignments out of the blue--someone contacted me to write about FM and CFS, I complied with the request and actually received payment for it, and that was that.
I find my account here of special interest because it describes how I believe the drug guaifenesin had a positive effect on my condition, even if the current majority opinion in medical science may be otherwise. I would like to know more about what happened to that drug--for a while it was sold by prescription, and by the bottle--but then became impossible to get, possibly because the FDA approved a New Drug Application to a single company in 2002 and ordered other companies to stop. I remember I even tried getting a supply from Canada around that time and couldn't. Guaifenesin is currently available as the active ingredient in Mucinex but I have no experience with using that brand for FM or CFS.
Note that the information provided below is the author's personal experience and opinion only and is not intended to be a substitute for professional medical advice.
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. (My doctor recommended ibuprofen instead, and that helped, although I've since learned I'm allergic to ibuprofen.) If the pain subsided, the fatigue took over and kept me confined to my bed, day after day, week after week, month after month.
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 traditional allopathic 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, although FM is not the
same as rheumatism. Like CFS, FM 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. I still consider the CFS to be my primary complaint, but my symptoms still indicate FM as well.
He prescribed guaifenesin--I seem to recall it was a prescription, or at least something that getting was more complicated than just walking into a store and buying off-the-shelf. By whichever method I procured the drug, 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, expelling what is making you sick--that may not be a scientific explanation but it's an understandable one. I
never clearly understood how it worked to relieve my pain but the fact is, it
made my FM (and CFS) symptoms more manageable.
Unfortunately, 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. I continued to manage my symptoms of pain with over-the-counter painkillers until I developed an allergy to ibuprofen. As I write this, my pain is present but simply bothersome, not debilitating.
To me, my condition is not about whatever medical professionals want to label it or what their tests and studies do or don't say. It’s
about managing my condition, whatever it is, and by whatever method works for me. 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.
