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.

DSCN1414

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.  

EXCELLENT presentation on Brain research & Chronic Pain conditions – Stanford University

If you have a brain in your head WATCH this!   Important information for everyone, whether or not you or anyone you know has a chronic pain condition (including – MCS, irritable Bowell, TMJ, Interstitial Cystitis, Back pain etc.).  It’s well worth your time.

Although the focus is fibromyalgia Sean Mackey, M.D., Ph.D explains how the emotions, the workings of the brain impact our physical well-being.

His presentation is 51 minutes long and then takes questions and answers.

Rosemary Lee, Seeking Equilibrium posted this on her excellent blog Seeking Equilibrium.  Rosemary keeps up with the latest research and I highly recommend her blog

Human Canaries- PLEASE take a few minutes to educate yourself on MCS.

Perfume not harmless

Hits a bullseye in your brain

Debilitating

Mindshaft of your brain

There’s one way in, no way out

Lost in the black maze

http://promisingpoetsparkinglot.blogspot.com/2011/09/perfect-poets-award-for-poets-rally.html

Thank you for the Perfect Poets Award!

I nominate Wendy, Create to Heal – http://createtoheal.blogspot.com/  -for the next Award

Thousands of people have sensitivities to smells aromas but  MULTIPLE CHEMICAL SENSITIVITY (MCS) is a debilitating condition.

It looks like a long read but it’s worth understanding this little known condition.

My dear friend Ida sent this NY Times article link (below) to me.  She  knows first hand the isolation, suffering that comes from having Multiple Chemical Sensitivity, this physically and socially debilitating illness.

http://www.nytimes.com/interactive/2011/09/18/opinion/sunday/20110918_OPINION_ALLERGYGOBIG.html?ref=opinion

(in slide show: click on the far middle right  to advance the first slide)

I asked this question: If your house was burning, what would you take with you?  

Here’s my original post: https://judithwesterfield.wordpress.com/2011/08/30/do-you-really-know-what-matters-to-you/

Here’s Ida’s comment:

“Well….I to respond to this. I have Multiple Chemical Sensitivity. I have lost everything I own five times and partially 3 more times, in the last 12 years because of mold sensitivity. I wouldn’t wish that on anyone.

I don’t think I’m materialistic, but I carefully and lovingly collected interesting and beautiful things all my life. Not many but enough. I’m not talking about expensive things, but things I treasured that were Artistic and had good lines, good design. A few things I had from my parents. I never went for the Bling, or the Trend. A lot of those things were part of me.

I keep ‘things’ for a very long time….one watch, one hair brush, same tea kettle…..all those years. I can say, oh materials things don’t matter, but it’s what is behind those things. It’s my history. I know some people’s history doesn’t matter. They don’t even read History. I do. It’s really different when it’s not voluntary. I don’t know anyone that walks away from what they own. I also know people who don’t own or collect beautiful things, or good books.

I’ve never bought a coffee maker or microwave, a TV, electric kitchen gadgets. Thank God. Everything I’ve ever owned is carefully selected. I’ve come to the conclusion, that’s it for me. I don’t know anyone, that does that to the extent that I do, but I do, so when I lose everything, suddenly, not by choice it’s devastating and it’s not because I’m materialistic. It’s because I care about me and I value me and everything that was part of me.

Maybe this doesn’t make sense to someone else. I”m now afraid to buy
anything and when I do, I again, do so carefully, with good design, lines. I get that small tea cup from the thrift store that says, “made in Occupied Japan”, or that Vintage Melita porcelain coffee carafe, or those water glasses from France. There I go again. Yes, if I lose them, I will miss them.”

The possible list of symptoms of Multiple Chemical Sensitivity is almost endless – varies from one patient to the next. Also worthy of mention here is the fact that there is no sharp demarcation between the symptoms of MCS and those of ME/CFS/CFIDS/PVFS (myalgic encephalomyelitis – chronic fatigue), but that most sufferers of MCS complain of at least several of the following:

  • burning, stinging eyes
  • wheezing, breathlessness nausea
  • extreme fatigue/lethargy
  • headache/migraine/vertigo/dizziness
  • poor memory & concentration
  • runny nose (rhinitis)
  • sore throat, cough
  • sinus problems
  • skin rashes and/or itching skin
  • sensitivity to light & noise
  • sleeping problems
  • digestive upset
  • muscle & joint pain.

The idiopathic or “not understood” nature of MCS means that doctors & others are often highly sceptical about the reality of – and nature of – the MCS condition.

Many features of Multiple Chemical Sensitivity and it’s effects and the way it’s effects are described by the sufferer seem altogether unrealistic, impossible or implausible to a conventional & scientifically trained consultant or GP.

The population at large are often equally sceptical, because the described symptoms (say, headache, joint pains, etc. ) and the externally observable effects ( say, runny nose, watering eyes, etc ), are blamed by the Multiple Chemical Sensitivity sufferer on an invisible chemical or toxin that the average person cannot even detect, much less be affected by !

How can a person really be affected by such a miniscule dose of a toxicant even if such a toxicant IS present? Surprisingly, perhaps, this is one aspect of Multiple Chemical Sensitivity that is very well understood in conventional medicine and it is called Sensitization.

Sensitization is a true allergic reaction to one chemical or irritant and is caused by involvement within the body of mast cells and IgE antibodies. Once sensitized to a particular irritant, a subsequent exposure to even a tiny amount of the same irritant ( even parts per million – ppm – or parts per billion – ppb) can cause an extreme allergic reaction.

Note: one ppm = 0.0001 percent.

These very low levels of irritant will often be totally undetectable to the average person and to them will be totally harmless.

Meanwhile, the main aspect of Multiple Chemical Sensitivity that is NOT fully understood – and that is regarded with such great scepticism – is that the MSC sufferer reacts similarly and in an allergic fashion . . .