Estimates of the number of cases of fibromyalgia – fibro
(FMS) in the US are unclear. Ten percent
of the population suffers with chronic, generalized pain. Half of the patients seen in pain clinics
suffer with the FMS – fibromyalgia syndrome. Estimates
for the number of cases in the US range from 4- 6 million but the true number
may be in the 10s of millions. More than
one million Americans suffer with CFS, chronic fatigue syndrome which may be
indistinguishable from fibromyalgia.
The annual incidence of Lyme disease is at least 300,000 (CDC figure). A significant
percent of patients with acute Lyme develop chronic Lyme.
The symptoms of fibromyalgia, CFS and Lyme and a few other
syndromes are virtually identical.
Patients with all these syndromes experience a disintegrating quality of
life, becoming increasingly disabled, unable to
work and to participate in normal life activities.
Fibromyalgia, once considered controversial -- a “garbage
can diagnosis” is now widely accepted as “real” and the medical community
extends their apologies to those previously told it is all in your head.
Lyme disease is where FMS was 1-2 decades ago, but more so. As
you have likely learned, doctors are poorly informed about FMS and some of the old
prejudice remains – doctors and lay people alike. I am sure you still hear it is not real. The politics of Lyme keep its
truths whirling and swirling and hidden, endlessly churning in the washing machine
of Medicine, hidden (writ large).
The standard line from most doctor is that Lyme doesn’t
exist – at least in a form causing chronic fibro-like illness.
These doctors are poorly informed. The CDC accepts the notion that some patients,
diagnosed with and treated for Lyme disease have persistent FMS-like symptoms.
These authorities say this group of folks are suffering with Post Treatment
Lyme Disease Syndrome (PTLDS). The premise is that – maybe germs persist, acknowledged
grudgingly – scientific facts are stubborn things, but still, the authorities state
unequivocally that additional antibiotics are not beneficial and may be
The minority view, the one that treatment of persistent
germs helps many patients is trampled on by the system.
One half of the patients diagnosed with and treated for
chronic Lyme disease have no recollection of a tick bite.
The ticks that
transmit Lyme are increasing in numbers annually as is the percent of ticks infected
with tickborne pathogens. A veritable menagerie of
germs: Borrelia species, Babesia, Ehrlichia, Anaplasmosis, Rickettsia, Mycoplasma,
Bartonella, viruses – sometimes deadly and others, along with new and emerging
strains, substrains and species of tickborne germs have been identified which
may cause acute and/or chronic disease.
Most patient never had/have a bull’s eye rash. Symptoms may begin suddenly or come on gradually. A stress to the immune system, like a car
accident, seemingly unrelated, as with FMS may trigger Lyme disease.
Lyme patients usually have chronic pain – joint and muscle
pain which changes locations and intensity over time in an unpredictable manner.
Lyme patients have impaired sleep, profound fatigue, brain
fog and cognitive dysfunction.
Lyme patients frequently experience low grade fevers, night
sweats and other associated symptoms suggesting the presence of a troublesome
co-infecting tickborne pathogen such as Babesia.
If you have been diagnosed with fibro and you experience so
many symptoms it makes your head spin and if your doctor, no longer listening to
your symptoms insists “no disease causes all of those symptoms” and suggests you
need to see a psychiatrist -- join the club. This frustrating or maddening experience is common amongst
many with Lyme.
Community is an important word. The world of patients with
fatigue/pain/brain fog is divided into camps and associated support groups.
I am concerned about medical tribalism, a tendency to adhere to a community world view and to block out competing views and information.
CFS. Fibro. POTS.
Mast cell activation disorders. Chlamydia pneumonia. EBV. Chronic candidiasis
etc. Beware of a "theory of everything." No one has it all figured out.
It is likely that a common threads runs through the groups. I would never claim that Lyme is always the
common denominator but it should be strongly considered in many cases.
Some symptoms commonly seen in Lyme patients are:
exhaustion, low grade fevers, feeling feverish without a fever, chills, night
sweats, fragmented sleep, unable to stand, unable to exercise, change in
vision, photosensitivity, ringing in the ears, sound sensitivity, (associated
thyroid disorders), shortness of breath, “air hunger,” racing heart, chest
pain, gastrointestinal dysfunction, altered menstruation, other hormone
imbalance, urinary dysfunction, headache, migraines, depression, anxiety, mood
disorders, irritability, anger, rage, social isolation, depersonalization, poor
memory, confusion, ADD-like symptoms, numbness, tingling, weakness, neuropathy
Lyme patients suffer with depression and many other
psychiatric symptoms. Preexisting depression, anxiety and other psych symptoms may have been there already -- or not --but
germs residing in the brain make psych symptoms or cause psych to occur symptoms de novo - never experienced before.
More Lyme facts.
Patients may not recall a tick bite; tiny
ticks, the size of a poppy seed may be
the stealthy culprits; the classical rash rarely appears; Lyme is increasing
common in regions of the country where it was once rare; any outdoor activity,
not only hiking, camping and gardening or picking berries but also sitting on a
picnic blanket at the park place you at increased or high risk; blood tests are unreliable and doctors and clinics are generally ill informed about testing; only a doctor who is familiar with the
disease and “believes” in the disease is likely to get the diagnosis right (my
opinion and that of many others);
patients are frequently misdiagnosed with depression, CFS and
The existence of fibromyalgia is unimpeachable. But it is a
syndrome – a collection or constellation of symptoms reliably found in cohort
of patients who share certain characteristics.
Experts suggest the “pathophysiology,” that which is wrong with
the nervous system and brain is understood. The underlying cause of the syndrome is unknown. A few FDA approved therapies
are available. These meds may help, help a little, do nothing or make
If you have Lyme and associated infections specific and
helpful therapies may be available.
These are opinions of the author and should not be used to
diagnose or treat any disease or syndrome.
I am available for consultation in my Rockville Maryland