Fibromyalgia, a perspective

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 harmful. 

The minority view, the one that treatment of persistent germs helps many patients is trampled on by the system. 

Lyme facts.

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 and others. 

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 fibromyalgia. 

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 symptoms worse. 

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 office.