Who knew I’d be a “national symbol”?

I’ve written many posts about my history of fibromyalgia, just not recently.  

My “foot episode” has caused a bit of a fiber flare-up, just in time for National Fibromyalgia/ME Chronic Fatigue day on May 12th.  

Here’s my story and I’m sticking to it:

In 1995 I contracted an invisible “illness”.  Out of nowhere I experienced excruciating burning pain in my hands, arms and legs followed  by years of gastrointestinal, cardiological, dermatological and emotional symptoms.  At the onset I was also in peri-menopause and experiencing mood swings, wildly, uncontrollably ric-o-shaying swings between happy to annoyed – which I’m minimizing for public consumption.

Back then fibromyalgia was not recognized by the medical community as a “real” ailment. Doctors considered it to be a syndrome: Unexplainable, unverifiable and psychosomatic. It was a Hysterical Middle Aged Woman’s Syndrome, as doctor after doctor told me. based on test, after expensive test coming back negative.  I was told nothing was wrong with me and to go home and “Get a life”.DSCN1413

Forever imprinted in my memory is an appointment with the chief of neurology at one of Los Angeles’ major medical schools (the doctor and medical center shall remain nameless because this is a true story)  He reviewed the test findings, looked at me knowingly – as if we shared a secret – and said, “You’re a psychotherapist. You know about psychological issues”.  He leaned forward, compassionately touching me on the knee and winked,  “Go home, live a good life and take up a hobby like kick-boxing.”  The only reason I winked back was to blink away the tears that were threatening to disrupt the façade that I wasn’t a hysterical middle-aged woman.

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I searched for anyone – gynecologists, gastroenterologists, cardiologists, neurologists, rheumatologists, environmental specialists, acupuncturists, immunologists, chiropractors – to name to what I had, to give what was invisible to everyone but myself a label other than HYPOCHONDRIAC.  I looked fine, acted fine, and thousands of dollars of medical tests came back negative.  All I took away from the 100’s of doctor’s visits was a stack of psychiatrist’s cards doctors handed to me on the way out of their office.

After years of  pain, escalating exhaustion, depression, countless doctors and tests I did qualify, on all counts, as a hysterical middle-aged woman .

Well over a decade later fibromyalgia was recognized by the medical community as “real”.  Current research indicates it might be a neuro-inflammatory/auto-immune disease impacting the  central nervous system.  No one knows for certain and there is no current cure.  

I’m no longer middle-aged or hysterical.  

But the doctors were right – it is, all in my head.

 Check out Carolyn Thomas’ My Heart Sisters –“You look great!” – and other things you should never say to heart patients and lots of other great posts about invisible illness.

  • Why, when you tell someone who is ill that they look good, they’re offended?
  • Practical ways you can encourage someone who is ill.

May 12th has been designated as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS).

May 12th was chosen as it is the birthday of Florence Nightingale. She was believed to have suffered from ME/CFS.

This is National Invisible Illness Awareness Week

P.S.  There are hundreds of millions of people with “Invisible Illness” in this world.  Click above to  read more information.  

I may have helped save a life today

Thanks to Carolyn Thomas and her excellent blog Heart Sisters I recognized a heart attack in progress.

In my writing class this morning the woman next to me got up unexpectedly and left.  On return she said threw up in the bathroom.  A few minutes later she said she didn’t feel good, hot and sweaty, and thought she should go home.  Something told me to ask her if she had chest pain.  

I interrupted the teacher and privately told him she had heart attack symptoms. He immediately had the facility call 911.  

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The woman kept repeating she was ok, in great health, played tennis 4 times a week, no history of heart disease in the family, ate well and would be fine.  Even after the paramedics came she kept questioning whether she needed to go to the hospital.

Because I’ve followed Carolyn’s blog I know common symptoms for women having a heart attack:

Women often have different symptoms of a heart attack than men and may report serious symptoms even before having a heart attack, although the signs are not ‘typical’ heart attack symptoms. These include:”

  • neck, throat, shoulder, upper back, or abdominal discomfort
  • shortness of breath
  • nausea or vomiting
  • sweating
  • anxiety or “a sense of impending doom”
  • light-headedness or dizziness
  • unusual fatigue for several days

This woman had three symptoms PLUS, by the time the paramedics arrived, pain radiated to her jaw.

I insisted she go to the hospital and she could blame me if everything was ok.

Everything was not ok.

Click & Read this: Words matter when we describe our heart attack symptoms