Still hysterical – I’m well practiced

1995: The end of life as I knew it:. I began experiencing excruciating burning pain in my hands, arms and legs. In 1996 fibromyalgia was not recognized by the medical community as a “real” ailment. Doctors considered it to be a syndrome: unexplainable, unverifiable and in all probability psychosomatic. Their unofficial diagnosis was “Hysterical Middle Aged Woman’s Syndrome”.

Doctor after doctor, told me, test after test after expensive test came back negative, that nothing was wrong with me and to go home and “Get a life”. Some looked at me knowingly, like we shared a secret “You’re a psychotherapist. You know about psychology” – Wink, Wink. 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.

I just wanted someone to put a name to what I had. Gynecologists, gastroenterologists, cardiologists, neurologists, rheumatologists, environmental specialists, acupuncturists, immunologists, chiropractors, Yup you are reading right! They are ALL in the plural. I didn’t just see one of each. I saw private practitioners, researchers, and heads of hospital departments. I’m sure each of them wrote “HYPOCHONDRIAC” on their charts.

Over two-plus decades later I’m no longer middle-aged, just hysterical.  I still struggle and some mornings I wake up feeling like a locomotive hit me and the bottoms of my feet on fire even tho the only thing they touched for 7 hours was a sheet.  BUT now that the pharmaceutical companies have realized there’s over 10 million people, in the United States alone and millions more world-wide, with this condition the research is progressing.  

 Fibromyalgia and chronic fatigue/ME are finally recognized “officially” as an illness.  The research now points to the possibility these conditions are auto-immune, neuro-inflammatory disorders in the brain.  

Those doctors were right after all — it IS all in my head!

judy

RATS! Hunger, Chronic pain & Me

Penn neuroscientists have found that animals’ brains can suppress feelings of chronic pain when they are hungry.

The study, which was published in the science journal Cell, found that temporarily shutting down chronic pain is part of animals’ survival behaviors when searching for food.

According to a press release, approximately 300 neurons are capable of shifting the brain’s focus to hunger, thus eclipsing the effect of chronic pain.

The researchers apparently didn’t set out expecting that hunger would influence pain sensation so significantly, but when they saw these behaviors unfold, it made sense to them. “If you’re an animal, it doesn’t matter if you have an injury, you need to be able to overcome that in order to go find the nutrients you need to survive.”

The Penn team also discovered that the neurotransmitter NPY is primarily responsible for selectively suppressing pain responses. This research could potentially be applied in humans to ameliorate chronic pain after injuries and serve as an alternative to opioid medications.

Naked Mole Rat sez:  “At your service. We rodents are here to help”.

 

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 have Sickness Behavior

Been curled up in a fetal position for 14 days (but who’s counting?)  My cold has traveled south  (undoubtedly looking for warmth) into my bronchials.  I don’t want to talk to anyone, see anyone, do anything and my guilty pleasures are no longer pleasurable.  The ever-present fibromyalgia fatigue has morphed into exhaustion and if I had the energy I’d invest in stock in Puff’s-plus-lotion-tissues stock options.

Bob the Blobfish sez: “If she thinks she’s got problems try being me with a cold . . .”

BUT Glory be! I’m not being a wimp!!!!  “Those feelings are a real thing called “sickness behavior,” which is sparked by the body’s response to infection. The same chemicals that tell the immune system to rush in and fend off invading viruses also tell us to slow down; skip the eating, drinking and sex; shun social interactions; and rest.”

“Those messages are so powerful they can’t be ignored,” says Philip Chen, a rhinologist at the University of Texas, San Antonio. But that doesn’t mean we don’t try. Symptoms like a stuffy nose are obvious, Chen notes, but we’re less aware that changes in mood and behavior are also part of our bodies’ natural response to infection.”

“There is plenty of evidence that having a cold impairs moodalertness and working memory and that brain performance falls off with even minor symptoms.”

“Excuses, excuses . . . “

Have a Heart, Give a Gift

Heart disease, not cancer, is the #1 killer of women.  I learned that and other invaluable information on Carolyn Thomas’ My Heart Sisters blog.

Over the years I’ve “stolen” and reposted many a wonderful post from Carolyn Thomas.  Her blog, Heart Sisters, has been one of the few I’ve followed for years.  I have forgotten what led me to her blog but once I read both her compelling stories and the up-to-date information on  women’s health, in particular heart disease, I was a Carolyn-groupie.  

Apparently Johns Hopkins was a groupie too when they asked her to write a book on Living with Heart Disease.  My guess is that her down-to-earth writing coupled with up-to-date research and information appealed to Johns Hopkins as much as it did to me.

Here’s just a sample of info found on Carolyn’s blog:

“Did you know: Women generally fare far worse than men after experiencing a cardiac event? One possible reason is that it can be confusing to make sense of warning symptoms when they do hit. Women are also less likely than our male counterparts to seek immediate help at the first sign of cardiac symptoms. Instead, we end up:”

  • toughing them out
  • waiting to see if they go away
  • blaming them on stress, muscle soreness, indigestion or other less serious non-cardiac causes

Read 12 cardiac symptoms women must never ignore

I can’t say enough good things about Carolyn – you’ll have to read her book and her blog to see for yourself what fabulous advocacy and education Carolyn has provided since her own “widow-maker” heart attack. (Full disclosure:  we are not related, I’ve never met her in person, and I don’t get a kick-back!)

Buy a copy and give the gift of life to a woman you love . . . maybe it’s even yourself

Save 20% when you use the code HTWN when you pre-order the book from Johns Hopkins

Order your copy click here:  Johns Hopkins University Press 

Johns Hopkins University Press is the publisher and here’s a fraction of what has been said about Carolyn’s Book:

[A Woman’s Guide to Living with Heart Disease] gives women the knowledge they need to become their own advocates in a health care system that continues to be weighted against them.”

“This book brings a needed focus to a leading killer of women today and is a must-read for women and their loved ones.”

“If you are a woman, or love a woman, this is a book for you! Cardiovascular disease is the leading killer of women. Here is a book focused on women’s cardiovascular health. It is all here—prevention, diagnosis, and treatment. Read it for the people you love.”

“This work is an important contribution to the discussion about heart attack and misdiagnosis in women. Thomas’s personal story—alongside the stories of millions of other women—provides a needed reminder of recognizing one’s symptoms, avoiding denial, and seeking medical attention. This elegant book is a unique addition to women’s health books and a necessary read for women and the people who care about them.”

Thank you Carolyn for pushing through your own symptoms to write a book of this magnitude.  

 

Laughter is the best medicine

The weather is changing

my body rearranging

Help! I’m in a fibro flare

Everything hurts

including my hair.

Sharon Bonin Pratt is a writer, an artist and a dear friend.  I think she also is psychic.  I’ve been not feeling great and the subject of her last post was just what I needed.  AND it’s dedicated to ME!!!!  What an honor!

Shari inspired me to look for a smile (SEE THE VIDEO).  

Here’s a sample from Sharon Bonin Pratt’s Ink Flare:

“Who can laugh without relaxing? Isn’t that why some of us (not me of course, and certainly not you, but other unnamed folks) pee their pants when laughing raucously? Losing all control is not a bad thing, even if you must change your whitie-dities, because when you’re having that much fun – who cares about all the rest? Oh, and it’s contagious! In a good way, not like the flu, but like having enough cup cakes for everyone in the world. So now I not only feel good inside my own world weary bod – I feel good because everyone around me also feels good. Motto for today: Spread cheer – laugh out loud.”

Read her entire post –  Sharon Bonin Pratt’s Ink Flare

Frankly Freddie – I found a cure for my human!!!

My Dear Human Beings and other critters,

My human has been too tired to go on walks.  All she wants to do is sit around and I’m getting bored keeping her distracted by petting me.  She blames Fibromyalgia/chronic fatigue but I’ve long suspected that she just needs a new career that is exciting.  I found the perfect cure – FOR EVERYTHING THAT AILS HER .

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The CURE

There’s a woman in England who  (instead of moping around like my human being)  got a pair of feathered fans to do a routine in a bar that was holding a cabaret night.

She said: “It was nerve-wracking but exciting . . .  I felt alive. . . . Even though she’s not completely cured, her chronic fatigue only flares up every two or three months – lasting at most for a couple of days. “

She’s got big plans for the future . . . She said: “I have signed up with the alternative model agency Ugly, in London and hope to start appearing in magazines and adverts.”  (I didn’t tell my human being about “Ugly” because I’m not sure what kind of magazines and adverts want “ugly” . . . )

Freddie Parker Westerfield, CDT RET

Freddie Parker Westerfield, CDT RET

My human thinks all this is just a ploy to get her to take me on walks.  I told her if she didn’t believe me to read this:  

Woman Bedridden With Depression And Fatigue Turns Her Life Around With Burlesque Dancing