Saturday, August 31, 2013

Fibromyalgia . . . the great mimic exposed

Florence Nightengale
It is surprising to me that Fibromyalgia has been documented in history for centuries and yet physicians today don't seem to be aware of this chronic illness that devastates lives.  There are biblical accounts of Job being stricken with a mysterious illness, and Florence Nightengale became bedridden from an illness she contracted during her Crimean War service (1854 -1856) and suffered with this illness until her death in 1910.  (  History of Fibromyalgia by Karen Lee Richards)  Both of them were thought to have had Fibromyalgia although a name for this illness wasn't coined until 1976.  Documentation of this illness was described in 1500 BC, so why isn't this illness better understood today?

The understanding of Fibromyalgia is rapidly growing today as researchers search for its origin and ultimately its treatment . . . and possibly a cure.  It wasn't long ago that fibromyalgia was recognized simply as a pain syndrome treated by rheumatologists.  Pressure points were identified to make the diagnosis, but the problem was that the pressure points changed from day to day.  Identifying pressure points is no longer the standard for diagnosis and it is now known that Fibromyalgia is a progressive neurological disease that mimics Multiple Sclerosis and Myasthenia Gravis.  Most Fibromyalgia information available in print and on the Internet still describe symptoms of chronic widespread pain, pressure points, fatigue and sleep disorders.  This description is less than adequate and ignores a multitude of symptoms that mimic other neurological disorders.  Today there are neurologists interested in research and treatment of Fibromyalgia and knowledge about this illness is leading to a better understanding.  Fibromyalgia is now being championed by neurology as Fibromyalgia symptoms are recognized as autonomic, muscular and sensory nervous system dysfunction.  This knowledge demonstrates Fibromyalgia's complexity, which is the reason Fibromyalgia has remained elusive until now.  Despite this understanding there are few neurologists that are up-to-date regarding this research.  When a patient presents with a myriad of seemingly unrelated symptoms it is still much easier to diagnose the patient with a mental disorder than an actual progressive neurological disorder that affects anywhere from 2% - 4% of the American population.

I have compiled a more complete list of symptoms and categorized these symptoms in three categories:  autonomic dysfunction, motor dysfunction and sensory dysfunction.  For those of you being treated by doctors with limited understanding of Fibromyalgia's neurological symptoms, you may want to copy this and use it as a tool for your next discussion.  If your doctor is threatened by this information it's a sign that you need a more knowledgeable doctor.

Autonomic Dysfunction
migraine or near migraine headaches
facial pain/facial pressure
burning, dry eyes
blurred vision that changes throughout the day
sensitivity to loud noises and odors
episodes of tunnel vision
night and day sweats not associated with menopause
body temperature dysregulation
irritable bowel/gastric paresis (early saiety, abdominal bloating, severe abdominal pain,
generalized claminess
hypotensive episodes throughout the day
severe nausea throughout the day
abdominal pain
chronic constipation/diarrhea
extreme fatigue/exhaustion
urinary incontinence
cardiac arrhythmias
hair loss
hearing loss
exercise intolerance
poor balance
widespread pain from head to toe, including joint pain
insomnia with unrestorative sleep
cognitive impairment (confusion, disorientation, dull feeling in head, short term memory loss, difficulty with word recall, impaired concentration)
neurotransmitter depletion
hormone dysfunction (low thyroid, estrogen, testosterone for age)
shortness of breath/air hunger with or without mild exertion
chemical sensitivities
sensitiviy to medications - need lower doses or inability to tolerate medications

Motor Dysfunction
generalized weakness
episodes of tremulousness
episodes of muscle fasciculations all over the body
muscle stiffness
hand muscle atrophy
hand and wrist weakness
dropping things frequently
muscle fatigue with mild exertion
stumbling and tripping when walking especially when fatigued
leg weakness - legs feel heavy and difficulty lifting legs
difficulty using hands to eat following meal preparation due to increased fatigue and pain
impaired fine motor control
difficulty swallowing
cramping pain in legs, feet, hands
restless leg syndrome (Willis-Ekbom Disease)

Sensory Dysfunction
paresthesias in all four extremities and trunk of body
numbness in fingers
numbness in feet
episodes of numbness in forearms and hands especially at night after sleeping
pins and needles in palms and bottom of feet
burning sensation in palms and bottom of feet
increased pain associated with pressure
inability to tolerate uncomfortable clothing (seams in clothing, scratchy fabrics,  bra, etc.)

Symptoms are worsened with any activity, socializing, infections (i.e., upper respiratory infection), any physical or emotion stress, lack of adequate emotional support and others.  This is by no means a complete list; this is a starter list.  I'm sure you can supplement this list or you may not be aware that you have some of these symptoms, because the tendency is to ignore symptoms in an attempt to cope with the misery you are in day after day.  When the motor symptoms begin you may explain them away by stating you are just "clumsy".  It isn't clumsiness; it's neurological dysfunction.

I have been largely absent from my blog as I have grappled with the reality that Fibromyalgia is a progressive neurological disease.  There are so many people struggling day after day with this illness without adequate professional support, and generally without emotional support from family and friends.  I have recently seen several neurologists to rule out other neurological diseases like Myasthenia Gravis and I currently have one more test that will be done: a hand EMG.  I am convinced at this point that I definitively have Fibromyalgia and so my difficult task is to find a neurologist that will treat me appropriately.  The Fibromyalgia journey would not be so difficult if there were
more informed and progressive thinking neurologists with an interest in Fibromyalgia.  The research is promising and the increased neurologist interest leaves me hopeful for us all.  The knowledge that Fibromyalgia is a neurological disease is very powerful tool for you to use as you advocate for yourself.  Knowledge is always power.  I don't know where you are in this journey, but it is my hope that I am able to give you at least a little emotional support.  There is nothing worse than being alone with a monster that seeks to rob you of your life.  Blessings to you as you travel along your path . . . as we travel along this path together.