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.  

Perfect Rainy Day for Celeste Cooper (and my bug)

Not a lot of people believe me when I tell them I wait for rain to wash my car.  I pull it into the driveway and when it’s wet enough I sponge it off, pull it into the garage and dry! Lickety split.  It’s raining right now in sunny southern California.

*Celeste, http://www.thesethree.com/ lives, works and writes in sunny Arizona where, when the rain falls, lightening booms.  I thought about Celeste today because both her poem and prose speak of rain.

Celeste Cooper

I Am But a Visitor Here©

by Celeste Cooper

I fondle the threadbare cloth, as I don the table,
Honoring the calls of nature, thankful I’m able.

The evening mist whispers,” Listen, hear my name,”
Interrupted by thunder, earth trembles, making its claim.

Learned chipmunks frolicking, hurry, to tidy their throne,
Drumming rain upon an awning, nature sways to the tone.

Hummingbirds arguing, swooping the found red feeder,
Obliviously provoking, rejecting, “who is their leader?”

Merely hobos we are, here, the land inborn by time,
Crickets melodically join in song, all claiming it’s mine.

Lightning enlightening the sense of my presence here,
Nature’s orchestra, the teacher, those willing to hear.

Strings strumming from the river, float up as a gift,
Deer blindly oversee meadows against the cliff.

Portly pine bellowing scent, permeating the park,
Nature quiets its soul, timidly soothed by the dark.

Flames speak, stimulating thoughts that are clear,
The campfire is laughing, “You are temporarily here.”

Brazen promise seen through the bifocals of time,
This inheritance, nature summons, proclaiming its mine.

Enchanted by this instruction, the beauty, I endear
The fact of the matter, “I am but a visitor here.”

Every Day a Gift ©

“I will meet each day with a grateful heart. It is through admission that I am able to have positive expectations. I accept the reality of temptations that could deconstruct my day. I understand that as the sun meets the rain, the rising up of peace will meet my pain. I am mindful of thought blocks and keep expectations in line with my reality. I will honestly greet positive with paper and affirm each day as a blessing not to be wasted.”
 
*Celeste Cooper, author, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: the Mind-Body Connection (co-author, Jeff Miller, PhD)
Celeste is a retired advanced trained registered nurse.  She cared  and mentored others, and practiced as a clinical educator who wrote and implemented continuing education programs.
She has experienced personal struggles trials, setbacks, and successes as the result of illness, which brought her ambitions to an abrupt halt.
Celeste advocates for education, change, awareness, and research, and her goal is to share ways to overcome obstacles and turn “road blocks” into a “road trip” full of opportunities.
 
Find LOTS of good information about Fibro, CFS and Myofascial pain, her book (and tips for journaling as A Way to Connect Your Body-Mind-Spirit) on Celeste’s web-site – http://www.thesethree.com/
 
Time to wash the car before the rain stops.

Wear sunglasses in the rain, never know when the sun will come out!

 SEE! A perfect day for car washing and Celeste’s wonderful poem and prose.  Whata combination . . .
 
 

Fibromyalgia, CFS Medical News

My first reaction was “I’m back” when I started taking a dopamine enhancer (Mirapex) for my fibromyalgia. “My” fibromyalgia!  Sounds like I’m possessive OF it instead of possessed BY it. . ..trust me, I’d gladly let it go, give it up, dump it, get rid of it, send it away . . . sorry, just got on a roll . . .

Back to the point of this post:

Even if you don’t have fibro or Chronic fatigue chances are you know someone who does.  It is estimated there are 10 million people with the condition in the United States alone.

I urge you to take at least a quick look at the latest edition of Fibromyalgia, Chronic Pain newsletter.  There are several links to the latest in medical information in the newsletter.

http://www.fmcpaware.org/user-subscriptions/archive/view/mailid-66/key-0fbd2e860c4cbfd5c4294e4c6e2b3dc1/subid-18999-3034782d559f8fa1f3990cf0a9d7a334

In the event you aren’t wanting to click on the link here’s one of the articles that pertains to dopamine:

Dopamine in Fibromyalgia & Chronic Fatigue Syndrome
Low Dopamine: How It Makes You Feel & How to Fix It
By Adrienne Dellwo, About.com Guide

“Dopamine has different roles in different areas of your brain. In the thinking areas, it makes you able to focus your attention. Low levels of dopamine in this area are linked with ADD/ADHD. In the movement areas, it helps you control how your body moves. Extremely low levels here lead to Parkinson’s disease, which is characterized by tremors and problems with balance and coordination.

People with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) generally have low dopamine levels as well. Symptoms of both conditions include both cognitive effects as well as movement and balance problems.

Low Dopamine

No neurotransmitter acts alone. They all work together in a complex web of activity that scientists are really just beginning to understand. Still, experts have been able to associate different neurotransmitter imbalances with certain conditions and symptoms and find some ways to help boost or decrease activity.

Low dopamine levels are associated with the following symptoms:

Stiff, rigid, achy muscles
Tremors  (restless leg)
Impaired fine motor skills
Cognitive impairment (called brain fog or fibro fog)
Inability to focus attention
Poor balance and coordination
Strange walking pattern (gait), frequently with small steps
High levels of dopamine, on the other hand, are associated with addiction, euphoria, hyperstimulation, excessive focus, suspicion, and the inability to separate what is important from what isn’t. If you’re taking medication that increases your dopamine levels, you should let your doctor know if you have symptoms of high dopamine, which is associated with psychological side effects.

Neuroleptic (antipsychotic) drugs lower dopamine levels, so if you’re taking anything in this class for another condition, you’ll want to talk to your doctor about symptoms that could be related to low dopamine. Common drugs in this class include:

Clozaril (clozapine)
Haldol (haloperidol)
Risperdal (risperidone)
Seroquel (quetiapine)
Zyprexa (olanzapine)

Increasing the Availability of Dopamine

Drug treatment of low dopamine levels may include stimulant therapy with Ritalin, Concerta and Methadate (all of which contain methylphenidate).

We don’t have a lot of research confirming that food can boost dopamine levels in your brain, and even if it can, it would take prohibitively huge amounts to have the desired effect. In spite of the lack of hard evidence, some practitioners recommend:

Tea (black or green)
Apples, bananas & watermelon
Blueberry extract
Red wine
Beets, beans & legumes
Chicken
Cheese
Eggs
Fish
Wheat germ

Supplements believed to help raise dopamine levels include:

NADH
L-Theanine (supplement form of amino acid unique to black and green tea)
Omega-3 fatty acids, from fish oil or flax seed oil
Rhodiola rosea
A note on tea & theanine: Studies show theanine increases both norepinephrine and dopamine while lowering glutamate levels, all of which can have a positive effect on those of us with FMS and ME/CFS. Research is mixed, however, on how theanine impacts serotonin levels. If you decide to try theanine, track your symptoms to see if serotonin-related symptoms get worse.

While it’s generally safe to experiment with these kinds of foods, don’t expect miracles and avoid extreme changes to your diet. Be sure to make changes slowly, and track your dietary changes and symptoms in a symptom journal to get an accurate gauge of what may be helping. You should always work with your doctor to decide what methods to try and how successful your treatments are.”