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It's hard enough being a guy with Fibromyalgia, but why did the National Fibromyalgia Association have to pick a butterfly as its mascot? That's sort of heaping insult on injury! We need a male friendly mascot! The one below is my nomination!

The graphic above misses a key irritation phrase for me: "I thought only women could get that."

The 18 Points Used in Fibromyalgia Diagnosis

Fibromyalgia is a syndrome predominately characterized by widespread muscular pains and fatigue. The causes of fibromyalgia are unknown; however researchers hypothesize that genetics and physical and emotional stressors are possible contributory factors to the development of the illness. There are difficulties in diagnosing fibromyalgia, since its clinical picture can overlap other illnesses and there are no definitive diagnostic tests. Patient education, pharmacologic agents, and other nonpharmacologic therapies are used to treat fibromyalgia. Exercise has been found to improve outcomes for people with fibromyalgia.

I. Background
Fibromyalgia is a disorder of unknown etiology characterized by widespread pain, abnormal pain processing, sleep disturbance, fatigue and often psychological distress. People with fibromyalgia may also have other symptoms; such as, Morning stiffness, Tingling or numbness in hands and feet, Headaches, including migraines, Irritable bowel syndrome, Problems with thinking and memory (sometimes called "fibro fog"), Painful menstrual periods and other pain syndromes.

The American College of Rheumatology (ACR) 1990 criteria are used for clinical diagnosis classification. Diagnosis is based on the presence of widespread pain (at least 3 months duration) and tenderness on 11 of 18 pressure points. Full criteria.

May often co-occur (up to 25-65%) with other rheumatic conditions such as rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), and ankylosing spondylitis (AS).

II. Prevalence
The prevalence of fibromyalgia is about 2%, affecting an estimated 5.0 million adults in 2005. Prevalence was much higher among women than men (3.4% versus 0.5%).

Most people with fibromysialgia are women (Female: Male ratio 7:1). However, men and children also can have the disorder.

Most people are diagnosed during middle age and prevalence increases with age.

III. Mortality
~23 deaths per year from 1979–1998. [Unpublished CDC data] Crude numbers of deaths coded as underlying cause-of-death as 729.1 rose from 8 in 1979 to a high of 45 in 1997.

In 1998,”Myositis and Myalgia, Unspecified” accounted for only 0.45% (42/9367) of all deaths attributed to arthritis and other rheumatic conditions.

IV. Hospitalizations
In 1997, ~7,440 hospitalizations listed ICD9-CM code 729.1 as the principal diagnosis.

People with fibromyalgia have approximately 1 hospitalization every 3 years.

V. Ambulatory Care
2.2 million ambulatory care visits.
1.8 million Physician Office visits.
187,000 Outpatient Department visits.
266,000 Emergency Department visits.

Medical and psychiatric co-morbidity are stronger determinants of high physician use than functional co-morbidity among patients with fibromyalgia.

VI. Costs
Average yearly service utilization costs/person = $2,274.3

Total annual costs (direct and indirect)/person = $5,945.

Medications, complimentary and alternative medicine and diagnostic tests are the largest components of direct medical costs among women with fibromyalgia.

VII. Impact on health-related quality of life (HRQOL)
Fibromyalgia patients scored lowest on 7 of 8 subscales (except role-emotional) of the SF-36 compared to patients with other chronic diseases.

Fibromyalgia patients scoring their perceived "present quality of life" averaged a score of 4.8 (1 = low to 10 = highest).

Standard, generic HRQOL instruments may not be sensitive enough to capture quality-of-life issues for many people with fibromyalgia.

Adults with fibromyalgia are 3.4 times more likely to have major depression than peers without fibromyalgia.

VII. Unique characteristics
Causes and/or risk factors for fibromyalgia are unknown, but some things have been loosely associated with disease onset:
Stressful or traumatic events, such as car accidents, post traumatic stress disorder (PTSD), Repetitive injuries, Illness (e.g. viral infections), Certain diseases (i.e., SLE, RA, chronic fatigue syndrome)

People with fibromyalgia react strongly (abnormal pain perception processing) to things that other people would not find painful.

Multidisciplinary treatment is recommended, including screening and treatment for depression, although evidence is insufficient to make global recommendations Aerobic exercise and anti-depressant therapy have scientific evidence for effectiveness in reducing disease symptoms.

Source: CDC

 

I was diagnosed with FM in 2006, shortly after I'd decided to submit my retirement paperwork to the Air Force. I'd experienced a long decline in both health and stamina and I knew I couldn't continue at the rate things were declining, as it was the last year after I'd submitted my paperwork were some of the hardest months of my life. There were a multitude of things wrong with me that I'll examine later, but the doctors were looking at each individual symptom rather than me as a whole; until, one day my wife made that exact observation and I took in several pages of what was wrong with me and sat down with a doctor and we played connect the dots. After much poking and prodding and a whole slew of tests...some of them quite nasty before a long week of waiting and wondering.

One morning, on a day I called in sick and didn't have the energy to get out of bed, I got the call. The good news was they knew what was wrong with me, the bad news was this was about as good as I'd feel for the rest of my life.

Yes, it was phrased exactly like that.

That was when I had a whole bunch of studying to do about something called Fibromyalgia, aka FM or FMS.

Fibromyalgia is a complex word:

Fibro = fibrous tissues meaning tendons and ligaments

my = muscles

algia = pain.

Its a chronic condition, meaning you're stuck with it every hour of every day, it is in large part pain across the entire body coupled with profound fatigue. Some simplify that and call it a combination of Chronic Fatigue Syndrome and Chronic Pain Syndrome. In this regard its a vicious circle, your body hurts (well, at least everywhere with tendons and ligaments, which is the entire body) and the pain keeps you from sleeping, but the body needs sleep to heal the parts that hurt so the pain doesn't quit and you can't get the sleep that the body needs to recover.

Fibromyalgia is more like rheumatism than arthritis, it doesn't cause pain or swelling in the joints but in the soft tissues surrounding the joints from head to toe. The pain is a deep ache and as you exert yourself it becomes a burning pain, picture burning your fingertip and then repeatedly poking something and rubbing it in little circles. That's a fair description. Some find the pain intense enough to hinder daily activities, others find it only mildly uncomfortable. Some find it both, depending upon the time of day and what they're doing.

Symptoms:

Sleep disturbance, stiffness, increased headaches or facial pain (Temporomandibular joint dysfunction), abdominal discomfort (digestive disturbances, abdominal pain, bloating, constipation and/or diarrhea=Irritable Bowel syndrome), irritable bowel, paresthesia (numbness and tingling in the arms, hands or feet), Raynaud's Phenomenon (cold hands, feet, ears or nose), skin problems, (rashes, hives, dry or blotchy skin), sensations of swelling, chest pains (costochondralgia & muscle pain which occurs where the ribs meet the chest bone), cognitive disorders (difficulty concentrating, memory lapses), depression and anxiety (as a result of the chronic pain associated with fibromyalgia).

Physical Conditions:

Allergies, bruising, clumsiness, dizziness, dropping items, dry eyes and mouth, feelings of swelling, hair loss, high or low temperature, irritable bladder, irritable bowel, lack of stamina, migraine headaches, mouth sores, muscle spasms, nocturnal myoclonus (restless legs), numbness and tingling, photophobia (sensitivity to light), skin itch, mottling, rash, sleep apnea, sore throat, morning stiffness, swollen glands, tender lymph nodes, tension headaches, visual changes and eye pain.

Mental and Emotional Problems:

Anxiety, confusion, mood swings, irritability, memory blanks, panic attacks, work mix-ups, trouble concentrating

An Expanded look at symptoms and effects:

Allergies and increased sensitivities to drugs. This is likely caused by the heightened sensitivity to the environment that comes with FM.

Bladder problems - Irritable bladder, urination frequency and increased incidents of bladder irritability, frequency and interstitial cystitis (urgent and/or painful urination, pelvic pain or discomfort, painful intercourse).

Brain abnormalities - cognitive dysfunction (memory loss or intellectual inefficiency) is seen in 70% of FM patients.

Butterfly rash - reddish (lupus type/ rash found in 25% of FM patients.

Chest pain and shortness of breath - seen in 60-70% of fibromyalgia patients.

Chest Pains: Although fibromyalgia does not involve the heart, some people with fibromyalgia will experience pains on the left side of the chest. The pains can be severe and quite frightening. Since chest pain can be a warning sign of a serious heart condition, it should be reported to a doctor. However, it is more likely to be diagnosed as chest wall pain, called costochondritis.

Cutaneous hyperemia - reddened areas on the skin, especially at tender points.

Depression, anxiety and stress - believed to be secondary to chronic pain. There are now many studies that support this.

Dizziness, inner ear disturbance, dizziness, balance problems, sensitivity to noise.

Dropping Things: The most common complaint is picking up a glass or plate only to have it fall and break for no apparent reason.

Dry eyes and dry mouth - are a very common finding, called sicca syndrome.

Ear complaints - which include pain, tinnitus, hearing loss and stuffiness.

Extreme fatigue - 100% exhaustion following minimal activity is common. 15% are bedridden and can do virtually nothing, 70% are home bound and cannot even do light housework, and 75% are easily fatigued by normal activity.

Eye complaints - including pain in or around the eye and focusing difficulty.

Headache - 60-70% of all fibromyalgia patients have a severe migraine-type headache. Although the headache may appear anywhere, most are one-sided and include facial and/or neck pain which often leads to muscle spasm.

Hypo-glycemia - low blood sugar and carbohydrate intolerance seem to be widespread in fibromyalgia patients. Symptoms include weakness, nervousness, headache, drowsiness, nausea and paresthesias of extremities.

Intolerance to alcohol - 50%.

Irritable bowel syndrome - 39% of fibromyalgia patients experience abdominal wall tenderness, diarrhea and/or constipation.

Mitral valve prolapse - Two good studies have been done showing that 60-75% of all fibromyalgia patients have mitral valve prolapse and will complain of irregular heart beat, flutter and/or shortness of breath.

Morning stiffness - 75% of all fibromyalgia patients report this symptom.

Mottle skin, especially on the inner arms and thighs, is also seen with fibromyalgia.

Muscle involvement - weakness, irritability and spasm (80%). Muscles are deconditioned and there is reduced ability for repair. Researchers are also seeing many damaged muscle cells. There is apparently a relationship between this finding and the fact that fibromyalgia patients have below normal levels of ATP in muscle cells.

Muscle Spasms: A lot of people with fm have muscle spasms, particularly in their legs, back and buttocks. One theory suggests that spasms may occur because the muscle tissue is short of oxygen due to reduced blood flow. Another is that the spasms are caused by the reflex reaction of a muscle in a generally painful condition life fm.

Nasal and sinus congestion.

Nausea and/or vomiting.

Nocturnal Myoclonus: This term refers to spasm in the arms and/or legs when sleeping. Some people have 'restless legs,' which is a condition that lifts or jerks the limbs.

Numbness and Tingling: Many with fm report they often have a sensation of numbness and/or tingling in their arms, legs, hands and feet. The medical term is 'parestheia.'

Pain - the characteristic pain of fibromyalgia is a diffuse achiness. It is poorly localized and is perceived to be in the muscles, joints, nerves and bones. Patients complain that they hurt all over and feel as though they have the flu. Occasionally the pain takes on a sharper stabbing quality. Many patients report that the intensity of the pain fluctuates, but that it is never completely relieved.

Pain in all four quadrants - 100% of all fibromyalgia patients have widespread pain, particularly in the shoulder, chest, arms, hands and upper back.

Painful swallowing.

Paresthesias - 70% of those with fibromyalgia have paresthesias, manifested by numbness, tingling and prickling.

Raynaud's syndrome - 20 to 30% of patients experience this to some degree, manifested by cold hands and/or feet, followed by redness, heat and tingling. If your fingers and toes (sometimes nose and ears) turn very white or bluish purple when exposed to even moderate cold, the change may be due to the constricted arteries of Raynaud's Phenomenon. You may not have full-fledged Raynaud's. For instance, your fingers may hurt with cold even if you are just running cold water over your hands.

Sensitivity to hot and/or cold - 98% of those with fibromyalgia feel worse in very hot or very cold temperatures.

Sensitivity to the Environment: People with fm are extremely sensitive to cigarette smoke, noise, bright lights and cold temperatures. Hyperirritable to the environment.

Sicca Syndrome: (dry eyes and dry mouth). Eyes may burn or itch, or there may be a sensation of having a small foreign body like a grain of sand in the eye. Dry mouth may also be caused by some medications.

Skin changes - seen in 70-80% of all patients - dry skin, peeling, net-like skin changes - hair loss, painful peeling of skin on fingers, nail loss (splitting and peeling).

Skin Irritations: An itch may be accompanied by hives or a rash or have no outward sign at all. Hot baths, heavy clothing, most medications (especially codeine) and even minor stress will often make it worse.

Sleep disturbance - 95% suffer from sleep disturbances due to decreased REM sleep.

Sore throat, swollen glands, low-grade fever and night sweats - are seen in 50-60% of fibromyalgia patients.

Spasms: Another cause of spasms could be muscle microtrauma - the tearing of small muscle fibers. Doctors think that people with fibromyalgia are very susceptible to muscle microtrauma, perhaps because of a genetic predisposition.

Subjective soft tissue swelling.

Swelling: Swelling, especially of hands and feet, is often experience with fm. Such swelling is usually slight - just enough, to make a ring hard to remove - and usually cannot be observed by anyone else. Some people may even have a sensation of swelling where none exists, referred to as 'subjective swelling.

Temporomandibular Dysfunction (TMJD): Facial pain affects about 25% of people with fm. It can be part of the diffuse pain of fm or can arise from TMJD. Some of the common symptoms of TMJD are: pain on chewing, pain in front of the ear (near the TM joint), muscle tightness, difficulty opening the mouth wide, noises when the jaw moves and ringing in the ears. A person may also have neck and shoulder pain, which could be referred pain from trigger points in the jaw area or lower neck.

Tender points - findings indicate patients are tender everywhere, including skin folds - some areas only more accessible to touch (i.e., tender points, see diagrams below for my particular points).

Thyroid disease - anti-thyroid antibodies are found in 20-30% of all fibromyalgia patients.

Tooth complaints - including pain, sensitivity to hot and cold.

Vision problems - i.e., photophobia.

Weather may also affect you and you may feel like a 'walking barometer.'

FM is a hard thing to get diagnosed in many cases, mine included, I probably had a long slow onset that wasn't actually diagnosed until it had badly impacted my life. It gets even more interesting when you consider that some doctors don't recognize the existence of FM. Then again the World Health Organization doesn't recognize the existence of PMS, which leads me to two observations. First that just because somebody is a doctor doesn't mean they are all that smart. Secondly, how many that make policy for the WHO are married...or women...scary!

Two more parting thoughts:

First, more people die from improper diagnosis and treatment than die of aids, car accidents and breast cancer combined every year, and a lot more than firearms as well.

Finally, somewhere is the worlds worst doctor, and somebody has an appointment to see that doctor today.

 

My fun pain spots!

These spots are my particular ones, consider that I have blown knees (one rebuilt), arthritis in my back and a few other fun add-ons I have different problems than some, and FM is a condition that tailors itself to the individual.  In other words, your mileage may vary.