living well with fibromyalgia vol 2; issue 1

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2013

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Winner of the

Feeling Fibro Fotos

Competition

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This Issue

5 Fibromyalgia Awareness 5 Happy Fibromyalgia Awareness Day 6 Milestones in Fibromyalgic History 8 The Fibro Show 9 I Have Fibromyagia 12 Can we Really Learn about Chronic Illness from

the Bible?

PERSONALLY 15 Dawn from SIN Jewellery shares her FM story

13 FM Profile Introducing...The Fibromyalgia Crusade

25 Blaming Fibro Fog Regular Features

4 What I have to Say

4 FibroModem Girl

11 POEM Life of Pain by Ashley Rae Castilleja

14 POEM Rainbow Fog by Heather Bushnell

17 Product Reviews

18 POEM Alive by Melissa A. Hernandez

27 Research News

29 Fibromyalgia Awareness Wish List

18 Lots of People Talk to the Animals The Story of One Service Dog

4

email:

[email protected]

blog: fibromodem.com

Facebook page:

www.facebook.com/FMawareness2012

Twitter:

@Fibromodem

Shop at:

shop.fibromodem.com

Editor: Simone Moszkowicz

FibroModem welcomes your feedback,

comments and any appropriate

contributions to further editions.

If you wish to contact FibroModem,

please use the email address:

[email protected]

Copyright FibroModem 2012

The views and opinions expressed here

are not necessarily those endorsed by

FibroModem

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Please exercise your own judgement

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and, where appropriate, take

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What I have to say

5

May 12th was chosen as International Fibromyalgia Awareness Day

as it is the birthday of Florence Nightingale. She was believed to have

suffered from Fibromyalgia.

Florence Nightingale, an English army nurse during the

Crimean War (1854-1856), was a pioneer in the International

Red Cross Movement. Nightingale became ill while working

on the front lines and never really recovered. She was

virtually bedridden much of the rest of her life with pain and

fatigue resembling fibromyalgia until her death in 1910.

Although the term, FIBROMYALGIA was not coined until

1976, throughout history people have reported illnesses with

strikingly similar symptoms. These reports can be found as

far back as Old Testament Biblical times:

I, too, have been assigned months of futility, long and

weary nights of misery. When I go to bed, I think, `When

will it be morning? But the night drags on, and I toss till

dawnAnd now my heart is broken. Depression haunts

my days. My weary nights are filled with pain as though

something were relentlessly gnawing at my bones.

(Job 7:3-4; 30:16-17 NLT)

This mysterious illness has been studied since the 1800s and has been identified by a

variety of names, including hysterical paroxysm, muscular rheumatism and fibrositis. The

term fibromyalgia was first coined in 1976 in an effort to describe its primary symptom. The

term fibromyalgia derives from new Latin, fibro-, meaning fibrous tissues, Greek myo-,

muscle, and Greek algos-, pain; thus the term literally means muscle and connective

tissue pain.

Over the years there have been a multitude of theories as to what fibromyalgia is and what

causes it. As the term fibromyalgia implies, it was logically thought to be a muscle disease,

since muscle pain seemed to be the primary symptom. However, research studies could

find nothing wrong with the muscles. For a while, it was theorised that it might be an

autoimmune disorder, but once again research revealed no disturbance of the immune

system.

Sadly, as often happens when medical science cannot identify an illness using standard

technology of the day, for most of the past 200 years, fibromyalgia was thought to be a

psychiatric or psychosomatic disorder. Even today, there are a few (many?) medical

professionals who insist on hanging on to this theory.

Fortunately, the 21st century brought new laboratory tests and brain-imaging technology

that has not only proven fibromyalgia to be a real physical disorder, but has also shown that

it is caused by a malfunction of the central nervous system. As a result of these discoveries,

new, more effective treatments are on the horizon (Bring it on!)

Hopefully, one day the history of fibromyalgia will be just that past history.

6

MILESTONES IN

FIBROMYALGIC HISTORY

1600s Fibromyalgia-like symptoms were first given a name: muscular rheumatism.

1816 Doctor William Balfour, surgeon at the University of Edinburgh, gave the first

full description of fibromyalgia.

1824 Doctor Balfour described tender points.

1904 Sir William Gowers (right) coined the term fibrositis

(literally meaning inflammation of fibres) to denote the

tender points found in patients with muscular rheumatism.

1972 Doctor Hugh Smythe laid the foundation for the

modern definition of fibromyalgia by describing widespread

pain and tender points.

1975 The first sleep electroencephalogram study

identifying the sleep disturbances that accompany

fibromyalgia was performed.

1976 Because no evidence of inflammation could be found, physicians changed

the name from fibrositis to fibromyalgia (meaning pain in muscles and tissues).

1981 The first controlled clinical study with validation of known symptoms and

tender points was published.

1987 The American Medical Association recognised fibromyalgia as a real physical

condition.

1990 The American College of

Rheumatology developed diagnostic

criteria for fibromyalgia to be used for

research purposes. The criteria soon

began to be used by clinicians as a

tool to help them diagnose patients.

1990s The concept of neuro-

hormonal mechanisms with central

sensitization was developed.

2007 The U.S. Food and Drug

Administration approved the drug

Lyrica for the treatment of

fibromyalgia. This was the first drug

ever to receive FDA approval for

fibromyalgia. (Since then, two additional medications Cymbalta and Savella

have also received FDA approval for the treatment of FM.)

Fibromyalgia Awareness

8

THE FIBRO SHOW is a weekly radio

show, dedicated to raising

awareness, information, and

inspiration for survivors of

fibromyalgia.

Hosts Haullie and Stacy are supported

by their Facebook page Voices of

Fibromyalgia - a non-profit community

page and web site dedicated to

spreading awareness, news articles,

stories, inspirational affirmations,

information, life lessons, and resources

to those surviving Fibromyalgia.

Recently, Haullie & Stacy interviewed Nicole Chilelli,

the winner of FACE/OFF Season 3 which airs on the

SyFy cable network. Face/Off is an American reality

television game show in which a group of prosthetic

makeup artists compete against each other to create

prostheses such as those found in science fiction and

horror films.

Nicole is the first female contestant to win the show. She is also a

fibromyalgia survivor.

Nicole works as a freelance artist on her FX and Beauty work, on

all types of films, photo shoots, beauty and music videos as well as

a freelance artist for M.A.C Cosmetics.

Nicole was titled RAW Artist of the Year at the 2012 RAWards - an

independent arts organisation, for artists, by artists.

Nicole is the only celebrity to ever give a full length interview about her life with fibromyalgia

so she has made history in the name of everyone who is suffering with this painful

condition.

Thank you to Nicole for sharing her story and for sending the message that you should

never feel guilty because fibro does not define who you are as a person, there is more to

you than your illness.

The full interview can be heard HERE

You can listen to The Fibro Show weekly at http://www.blogtalkradio.com/thefibroshow

or follow Voices of Fibromyalgia: http://www.facebook.com/voicesoffibromyalgia


9

Awareness is defined as showing or having knowledge or realization of understanding

something.

In order for there to be awareness, you must have both sides actively participating: the

Fibromites who are living with the struggle of having Fibromyalgia (and its evil sidekicks)

and their family, friends and co-workers who watch the person in their life who was once

upbeat, active but now changing appearance, activity and their way of living life.

I approached several of my online support groups with two questions:

What do we want non-fibromites to know?

As a Fibromite, what do I want? I want others to know that we are like everyone else in the

world - we want to be seen and believed. I wish that no one else have to go through years

of people telling you it is in your head; having to sit in front of doctors telling you the same

thing (the tests found nothing), searching every day for the new treatment that will make

living life bearable.

I was excited in anticipation to see the responses to Question #2 - I was hopeful to learn

new ways that I could use myself and share with others...

Melissa lives with her husband, daughter & 3 cats.

In addition to Fibromyalgia, she has 10 of its evil sidekicks as she

calls them. She works full time, is a Girl Scout leader, and chauffeur

for a 12 year old. She loves watching her daughter play JO

Volleyball. She also enjoys her Aqua Zumba & Water gym classes,

her online support group, her Facebook Page and writing her blog.


10

Although the term Fibromyalgia was not coined until 1976, there has been mention of the

symptoms as far back as 1500 BC. And, finally, we have the technology available to us to

Make our Voices heard and yet...

After jumping hurdles to be diagnosed and turning our families into believers, I have found

that those of us who know the most and should be doing the educating have stopped

sharing.

We get so tired of explaining ourselves, "how the pain feels", "how exhausted we are", that

we become silent. Those who are around us seem to get sick of hearing about it; and we

get tired of reminding them.

We join closed online groups where we can share, vent, and educate each other while

keeping the world out. We go there to be understood, to be heard without judgment and to

cry. We have two sides; one that we post on our Facebook pages for most of the world to

see; the other that we post for our "closed groups" to see the real us.

May is Fibromyalgia Awareness month.

We should be shouting to the World:

I HAVE FIBROMYALGIA; IT IS REAL; IT HURTS; I AM STILL LIVING.

I am a FIBRO WARRIOR ~ LIVING LIFE

Melissa runs a Facebook page called Fibro Warriors ~

Living Life and, if you enjoy her writing, please visit her

blog: This is My Life ~ Surviving Fibromyalgia.


11

Life of Pain

I look normal on the outside

But I'm kicking & screaming on the inside

Bleeding with pain

That pours in me like rain

It can be hard to endure

As I pray they'll find a cure

I put on smile to hide

Covering the evidence that I just cried

I tell myself I can be strong

To let it run along

Even though I feel numb & lifeless

The agony attacks my core making it feel endless

Top secret never to be read

That's what I tell myself in my head

The more I keep it hidden

I convince myself it's forbidden

I push through everyday life

Hoping I will survive

The needle point prickling

That continues to keep attacking

Even on a sunny day I feel as if I'm covered in fog

I try my best to move along

Instead I feel out of sorts

And at times a loss for words

The lack of my visits to dreamland

Makes me miss being able to sleep on demand

Five hundred pounds of weights drop on your body

Feeling so heavy to even lift a finger to touch somebody

There are so many rules

I break them, which might make me a fool

I can't imagine a life without pain

I would freely break my chain

Feel the complete satisfaction of being free

And this is what it's like to be me

A

Ashley Rae Castilleja


12

Shana Dubow Lehrmann is a member of the Macon Writers Group,

living in Warner Robins, Georgia, USA with her husband,

daughters and dog. Her writing has most recently received

recognition with 2nd Place for Non-fiction in the

WatchMeBounce.com 2012 Resilience Writing Contest. To link to

more of her online work, visit http://bu-t4ashes.blogspot.com/.

Somebody suffered a trauma or series of stressors, then frequent insomnia, persistent

widespread pain, lethargy, skin irritations, unco-operative bowels, loss of appetite,

moodiness, and depression. Friends misunderstood, spoke hurtful words and even

abandoned the one in need. Sound familiar? Think it only happened to Fibromyalgia

patients recently?

I have noticed two common mistaken impressions. Firstly, Fibromyalgia is a modern

disease; and, secondly, the Bible is a collection of ancient stories bearing no relevance on

our times.

While the term Fibromyalgia is a designation that has only existed for a few decades, the

condition has been studied by some doctors since the 19th century, possibly centuries

earlier, under other labels, and some hypothesize its existence for millennia. To support this

theory I cite the oldest known Hebrew poetic book.

Historians date the story of Job to an era before Mosaic Law (1,500 BCE). Our main

character lived in Uz, blameless and upright; he feared God & shunned evil.* His seven

sons feasted in their houses every one his day^ and invited their three sisters and their

husbands. Jobs wealth included 7,000 sheep, 3,000 camels, 500 yoke [pair] of oxen, 500

female donkeys, a very great household^ and large number of servants.* Once a week

He sacrificed burnt offerings to sanctify his children in case they had sinned and cursed

God in their hearts during their revelries. He was generous to the needy in the community.

In a single day raiders took most of Job's livestock, a meteor shower killed the rest, a

windstorm destroyed his home, and all the servants, who reported these calamities, were

killed. Job mourned in the manner customary to his people.


13

We are not told how much time passed, but suddenly Job's body was covered with boils.

You may think this is nothing like Fibromyalgia, but keep in mind that many who live with

FMS also suffer from other illnesses. I personally have cystic acne which occasionally

develops a boil or two.

Job reveals gradually the symptoms that he suffered for another indeterminate length of

time: he could not eat, he groaned constantly in pain, he was unable to rest, he suffered

from depression, paranoia, kidney problems, gall bladder/digestive problems, bad breath,

poor eyesight, weak limbs, tooth loss, skeletal pain, connective tissue pain, incontinent

bowels, discoloured skin (other than boils), and fevers. His wife, who also suffered the loss

of all ten of her children, the familys means of support and cared for her chronically ill

husband, reached the end of her rope. As he sat in an ash pit scraping his skin with a piece

of broken pottery (we aren't told if this was ritual, a treatment or because he was hurting

himself from the stress), she scolded her husband for clinging to his faith, then told him to

curse God and die and get it over with.

The unknown passage of time changed Job so much his friends hardly recognized him

when they arrived to comfort him. They mourned silently with him for a week. But when he

told them he wished he had never been born, three started to say things that were hurtful. In

despair, he became defensive and argumentative.

Another friend, Elihu, waited until the four older men had argued themselves in circles. He

listened carefully before he spoke to be sure he understood, but nothing in the three friends

words was persuasive and Jobs words contradicted themselves. He asked Job kindly to

hear him out.

Elihu teaches many important things about suffering. Chief among these are: God may use

hardships as warnings that we are in danger; He often does not give us everything we

deserve, for which we should be grateful; He gives us chances to turn the right way and

make things better; if we waste time complaining, doing good does us no good, we won't

find out if it will do us any good; those who chase the wrong things only prolong their

distress; and meditating on the phenomena of nature which bears witness to the glory of

God may be one way to adjust ones priorities and perspective.

Jobs story ends with the appearance of God, Jobs repentance for his complaints against

the deity, the punishment of the three friends who spoke so harshly to Job, his wealth was

doubly restored and his wife bore seven more sons and three more daughters (who were

actually given a share of the inheritance, unheard of for females in that age). But we are left

to wonder about the patriarchs health. Some scholars claim Job was obviously completely

healed since the story says he lived to be 140 years old.

However, it is possible to live with a non-life-threatening but chronically painful condition to a

ripe old age. My grandmother who had FMS and Rheumatoid Arthritis only passed away at

91 because she refused to continue seeing the doctor, taking her medications, moving and

eating nutritious foods on a daily basis. I choose to believe that Job discovered a balanced

spiritual and physical approach that, despite the pain, allowed him to keep enjoying life with

his children, grandchildren and great-grandchildren.

All Biblical research is from The Holy Bible ^King James Version and *New International Version

(Copyright1973, 1978, 1984 by International Bible Society, All Rights Reserved), and only quoted

where indicated exactly by the above symbols.


14

Rainbow Fog

Red is the colour that depicts my pain

Glowing and angry, it burns like a flame

Envy, a green beast that takes over me

Jealous of those spending their days pain-free

Black, black depression weighing down on my chest

Fed up with waking each day not feeling my best

Pink, orange, yellow these magical pills

So many I rattle, yet racked with pain still

Blue skies go unnoticed, and the suns not so bright

For grey clouds hang over this daily fight

Purple butterfly, fluttering, a sign of support

White coats doctors wear; We can help they purport

A rainbow each day yet these colours are dull

Like a multi-coloured fog swirling in my skull

Cohesive thought fails me, memorys gone

Back to bed I think another day done.

Heather Jo Bushnell

Make Fibromyalgia VISIBLE with this Facebook cover photo


15

Introducing...The Fibromyalgia Crusade

Leah

Tyler

From my pain I have found my

purpose and share my journey to

inspire hope. I seek not to be defined

by what I have endured, but by what I

have overcome. 4 pancreas attacks,

CFS/ME, Fibromyalgia and 2 strokes,

all before age 34!

There are things in life that happen. Some

change your perspective, others your

world view and still different ones will

change your entire world. I learned pretty

early on its not what happens to you in

life that matters, but what you do with it.

And then I kept getting blindingly painful

opportunities to put that agonizingly

challenging lesson to practice. Perhaps

none as transformative as the two strokes

I had the week before my 34th birthday,

though. The night my doctor gave me a

diagnosis and told me I was going to live,

after 48 hours of invasive testing with little

hope that I would, was nothing short of

miraculous. As a Fibromyalgia patient

things like a speedy diagnosis or

prognosis for recovery are as precious

and rare as a ten carat diamond.

I stuck my good news proudly in my cap

like a Yankee-doodle feather and ran

home to give back some of the goodness

so graciously bestowed upon me. It was

crystal clear my charge in life had

changed. I was spared for a reason, and it

was up to me to discover that reason. In

that spirit I set down my makeup artist

brush and picked up my writers plume.

Promoting a private and unadvertised

blog, Chronicles Of Fibromyalgia, Id

been pecking away at for a few months

was incredibly liberating. Nobody was

more shocked than I when people started

giving positive feedback. So I kept writing.

The more I wrote the more I networked

and the more I heard from people who

liked to read my words.

It didnt take long for me to assess a

gaping need within the community. The

struggles Id had finding a doctor to take

me seriously when all my blood tests kept

coming back normal was not mine alone. I

FM PROFILE


16

wasnt the only one to feel madness and

panic as I watched my hopes, dreams,

aspirations and future flush down the

rabbit hole right in front of my face, too

sick to stop it. Others were in precarious

financial situations when they too got so

sick simply getting out of bed felt like

running a marathon, unable to keep up

with the demands of 50+ high-stress

hours a week. And I certainly wasnt an

island into myself with the ills chronic

illness inflicts on personal and familial

relationships. No, the biggest nightmare of

my life seemed to be pretty run of the mill

in the company of fellow Fibromyalgia

patients. And it broke my heart.

Quite frankly there were few hard and

concrete truths ascribed to this condition

but myths ran rampant in every direction.

Doctors didnt agree or know how to treat

it. People seemed to experience the

illness in different ways and they too were

at odds with how to respond or what to do.

Friends and family members were

confused, often placing doubt or blame on

the patient in their lives. For many

Fibromyalgia was a kiss goodbye to the

perception of sanity on their medical chart.

The scarlet letter invisibly emblazoned on

the chests of healthy looking people on

fire inside. The battle ax severing life as

they knew it for a rapidly multiplying

population in pain.

And far too many of them were fed the

same song and dance I was, told there

wasnt much to do about Fibromyalgia. So

I set out to let everyone know I thought

there actually was a lot that could be done

to get out of epic and excruciating level

ten pain. How important it was to find

sleep, or what a difference cutting out fake

and processed foods could make. That

reducing stress and incorporating exercise

may make all the difference in the world. I

didnt have a secret, solution, lotion or

potion. But I did have my experience. With

the help of a pro-active doctor and an

intense self-education on health and the

human body I had learned how to mitigate

my symptoms so life was livable again. My

Fibromyalgia wasnt gone but it was

managed, worlds away from the agonizing

hell that disabled me at the age of 29. The

Fibromyalgia Crusade was my answer to

educate, challenge and inspire my fellow

patients to do the same.

Nearly three years later I have seen

thousands drastically improve their quality

of life. Ive watched them take their power

back by finding a doctor who is on their

side. Theyve given up bad things and

started doing good things and endure

lifes trials with a little more ease. Ive also

learned how incredibly individual the

Fibromyalgia experience is. Its caused for

different reasons in different people who

experience the illness in different ways,

many burdened with other medical

conditions complicating their lives further.

Life with Fibromyalgia can be quite a

challenge. The Fibromyalgia Crusade

encourages each patient to educate and

advocate for themselves to seek and find

what works for them on the personal

journey to reclaiming their life from chronic

illness.

The Fibromyalgia Crusade is a patient united

awareness campaign promoting information,

resources and support to aid in understanding and

managing Fibromyalgia. You can find the website

at http://www.fibromyalgiacrusade.com/.

Leahs blog can be found at

http://chroniclesoffibro.blogspot.com.au/.

There are also two Facebook pages that support

the campaign:

https://www.facebook.com/TheFibromyal

giaCrusade

https://www.facebook.com/FibromyalgiaF

unHouse

FM PROFILE


17

Product Reviews It never hurts to have an array of products to combat fibromyalgia. We need all the help we

can find because relief cannot always be found in a prescription. I have asked some of our

readers for their views on some products. They have scored each product out of 5

butterflies:

Product: SPA FIT Line from THE BODY

SHOP (www.thebodyshop-usa.com/)

Reviewer: Summer Fenton, a Licensed

Esthetician and an ACE-Certified Group

Fitness Instructor with a specialty in

Fibromyalgia who has been managing

fibromyalgia for over 15 years.

The SPA FIT Line is advertised to help the

skin look more toned and firmer along with

refining and smoothing the texture, but to my

surprise some of the products ended up

relieving my fibro pain.

SPA FIT Toning Concentrate

Advertised to help the skin look

more toned, this has become my favourite

for relieving pain in my neck, traps, around

my ocipital ridge (the base of the skull),

and the front of the neck/including the jaw

line and the scalenes. I also use it on my

lower back, hips, and legs along with the

massage oil and the body massager. The

combination of ingredients work well for

me on and around the sensitive area of

the neck. With moisturizing humectants,

along with caffeine, menthol and citrus

based aromatherapy oils, it provides quick

relief.

SPA FIT Smoothing Refining Body

Scrub

This scrub says it refines the skin by

making it look smoother and feel firmer. I

found it to be a very mild exfoliant. It didn't

affect my fibro one way or the other.

SPA FIT Firming & Toning Gel-Cream

Massager

I tried this gel-cream on my legs, lower

back, and hips. The intensity of the cream

was too much and I did not care for the

discomfort. It reminded me of

BIOFREEZE. However, the massage tip

on the end of the tube fabulous to use on

my neck with the Toning Concentrate

listed above.

SPA FIT Toning Massage Oil

What a great oil for massage.

The citrus scent is uplifting which I find

helpful during a fibro flare. It has perfect

slip for massaging and is not too heavy. I

love using this with the Body Massager

after I have applied the Toning

Concentrate on my legs, back, and hips.

SPA FIT Body Massager

This is a terrific massage tool!

It is advertised to stimulate circulation and

tackle tension. The nubs on it provide the

right amount of stimulation to relieve my

fibro pain on the larger areas of my body.

It fits on my hand perfectly and is easy to

manipulate. However, I still prefer the

smaller and softer massage tip on the

Firming & Toning Gel-Cream for getting

into tight places like on the neck, below

the skull, and behind ears.

*Be sure to follow the manufacturer's directions for

use as these products are not advertised for

Fibromyalgia. These are just my personal

experiences with these products.

Product Reviews

18

Product: BIOFREEZE

Reviewer: Kim Waugus

BioFreeze is available in roll-on, spray-on,

and gel from iHerb.com. It also comes in

wipes. (If you are new to iHerb, use code

LHJ194 to received $10 off your first

order. Purchase $40 or more and your

shipping is free.)

I am hot most of the time so I use a lot of

cooling topical lotions/gels like Bio-freeze.

It contains a topical analgesic to calm my

skin when its sensitive and works deep for

sore muscle pain. The active Ingredient

is menthol, a plant extract. The natural

ingredients fall under inactive ingredients

because they havent been evaluated for

effectiveness. Arnica is a pain reliever,

boswellia an anti-inflamatory, aloe is

soothing, burdock root another anti-

inflammatory, etc. It has a pleasant

smell, works quickly, and lasts 4-6 hours.

If my skin hurts to the touch, the spray

works great, BUT IT GOES ALL OVER so

I prefer the roll-on, when I can tolerate it, I

for more precise application. Ive used it

on just about every part of my body,

except my face. Studies have shown that

Biofreeze is more effect than ice for

reducing muscle soreness.

Pros: Topical analgesic works quickly,

reasonably priced (4 oz roll-on is $10.32),

cooling when applied, pleasant smell. Can

use every 6 hours. Natural ingredients.

Cons: Dries slightly sticky. Drying to the

skin if used frequently. Regular Biofreeze

contains food dyes but is now available in

a dye-free formula.

LHJ194

ALIVE

To the bleeting of the alarm I did wake

But was it morning or was it a mistake?

The sky was gray and cold as stone

and the rain brought an aching to my bones.

But the birds still sang and the trees did sway;

So I rubbed my eyes and began my day.

Tufts of fog glided like skaters over the pond;

but no sight of the sun, just clouds rolling on and

on.

A lively song the rain drops played;

upon the roof like ants on parade.

Pitter, patter, drop by drop...

I wondered if it would ever stop.

Then I sat and gazed awhile and wondered,

"what's my hurry?"

it could be icy cold and instead a strong snow

flurry!

So I sat back down and settled in

and watched the rain as it trickleddown.

Andsmiled wide to be alive

instead of6 feet underground.

Melissa A. Hernandez

Click

HERE

to go

straight to

the SALE

page

Product Reviews

19

Personally Dawn used to be a middle years art teacher, but now she

is an ocean-obsessed visual art teacher/jewellery artisan

who creates sterling & gemstone jewellery inspired by

water, the beach and antiques in her downtown studio in

Alberta, Canada.

I was diagnosed with Fibromyalgia about a year ago, after

about four years of various tests, surgeries and time spent in

many different doctors offices.

Having a diagnosis was a relief. Before that, I really thought

I was dying of something unknown. Its scary.

Now that I know that Im not, Im doing much better. Im able to be calm about the

symptoms that I experience, therefore I stress less and, in turn, hurt less. Ive been able to

grieve over having to give up my teaching job. I worked in one middle years school for 25

years. Leaving that school was like leaving a home. It was difficult, but necessary to my

health.

For a while, I just relaxed at home. I had jewellery making as a hobby with a great studio in

our basement. It was an excellent space large and well equipped. However, it allowed me

to stay in my pjs or sweats all day, which isnt always positive. And I was alone all day. After

about six months, I realised that I needed more.

I decided to take a HUGE step and rent a downtown studio. This is

risky for an artist, when you still have a steady pay-check; although I

was about to lose mine once as soon as my sick days ended.

I took the risk and never looked back. I love my studio. I now have a

reason to get dressed and get out of the house most days. I may not

get there until the afternoon, but I get there. I share a space upstairs in

the same heritage building with a photographer and two nail techs. Its

inspiring and uplifting to share ones space with other creative types. I

also take my dog to work each day. How many people get to do that?

My husband works right across the street,

so he comes to visit often.

Working in my studio is healing. I dont make a lot of

money, but I make a difference to others and work

creatively, which are both so important in life. Im blessed

to be able to do something I love. My hours on the door

are by chance or by appointment, in case I have a bad

day and cant make it in. My customers have been so

understanding! I do mostly custom work, but I do sell some one-of-a-

kind pieces at a local place situated just down the street from my studio.

Ive also become involved with Habitat for Humanity and Ive started a jewellery

guild in our community.

Personally personal accounts of FM battles

20

What advice would I have for others

with Fibro?

Routine is key - This isnt easy for

me as Im so-o-o-o-o-o not a

routine girl. And Im naturally a

nighthawk. But Im trying a routine

and it helps when I do follow it.

Work on your diet. Ive gone gluten

and lactose free, which has helped

my stomach issues & IBS.

Seek support. Im so lucky that my

husband, family and friends are

supportive. Not everyone has that.

If you dont, seek it where you can

get it. Find a doctor that will treat

Fibro. I used to have one who

didnt really believe in it. Now I

have a specialist and a family

doctor who work together and

support me in my treatment

options.

Ive tried three different medicines,

two of which were nightmares and

one which worked for me. Keep

trying until you find something that

works with your symptoms. Were

all different.

Exercise. Stretching and yoga help

me a lot. So does slow walking for

5-30 minutes. Im not perfect. I

dont do this as often as I should,

but when I do, I feel a difference.

Quit worrying about what others

think. The best quote Ive heard is

what others think of you is none of

your business. Get over worrying

about what you look like.

And most importantly, have a

positive outlook it is the single

most helpful thing. Think about

what you DO have. Do what you

CAN do. Ask for help with things

that you cant do. Smile. Help

others. Everyone has skills they

can use to help someone else. : )

Sure, I hurt. I have almost all of the

symptoms one can have with Fibro. But

Im not dying. Im very alive. For that, Im

so thankful. I dont want to just exist. I

want to LIVE.

Dawns hand-made jewellery is available from

http://www.sunshineindustries.ca,

https://www.facebook.com/SINjewelry,

http://www.etsy.com/shop/SINjewelry and

https://twitter.com/SINjewelry

21

I want to begin by stating outright: I am in no way an expert on service dogs. I am a

complete and utter novice. I will only tell you MY story, of my journey these past four years

with my service dog, Allie. First, I should say that I never intended to get a service dog, and

if I were to do it again, I would go about it in a deliberate and mindful way. This is how it

happened for me. I would not recommend this accidental path, but it did work out in the end.

I rescued Allie as a 6-week old puppy, thinking that it would be good for me to finally get a

dog again. I grew up with all sorts of animals. Nature and animals in particular have always

been very healing for me, and I thought a dog would be

good for my health. The last several years had been

rough (and animal-free), as Id gone through a divorce,

sold my house (at a loss), and moved across the

country to go to graduate school. My only parameters

were that I needed a puppy; it ought to be a rescue,

and should be on the smallish side. After weeks of

pouring over online photographs, I spotted Allies

picture and knew immediately that she was the one:

there was something in her eyeseven in an online

photothat spoke to me. I arrived at the rescue an

hour early just to make sure no one else got her. And

that is how it all began.

How Does the Service Dog Help?

We clicked immediately. I bought a crate for her and tried to settle

her into the soft nest Id made for the ride home, but no, she

insisted on nestling onto my shoulder. Any hint that I might put her

down led to amazingly loud protests that simply wouldnt stop. She

would only sleep snuggled up with me, no matter how many tricks I

tried. That is when something amazing happenedI slept well for

the first time in months. I cannot tell you why, but I did, and to this

day, she helps me rest, settle down, and sleep.

Next, she began to discover my worst pain areas, and would firmly press herself against

the pain, gently warming me and releasing the muscles. She also began to lie across my

neck when I would sit, warming and relaxing those muscles. During the day she would climb

Diana Hollinger is coordinator of music education at San Jose

State University, and holds degrees in music education,

conducting, and composition. For the last few years, her dog Allie

has worked with her at the university.

Diana with a baby llama at a petting zoo in Venezuela (pre-Allie) - animals have always been very healing for her.

Talk to the Animals

22

Lots of people talk to animals.... Not very

many listen, though.... That's the problem.

Benjamin Hoff, The Tao of Pooh

into my arms and hug meone leg on either side of my neck, body pressed against me,

face pressed to my cheek - and the pain would instantly lessen, muscles relaxing.

When I worked at my computer, I put her bed next to me, and she would literally monitor

menudging me for attention when she knew I needed a break, licking the horrible carpel

tunnel I suffer with, and allowing those muscles to relax, or hooking her head over my wrist

and warming it while I typed. I began to praise her for the things that helped so much, and of

course, she did them more. We made up our own language. Reaching for her and saying

up meant I needed a hug, I trained her to follow me through clicking (like you do a horse).

Tiny whimpers or barks meant she was trying to tell me somethingtake a break, or you left

something on the stove, or you left the door unlocked, or the bathtub is overflowing, or it is

time to go to bed. She did all of these things, and I was simply amazed, and I praised her

and expanded upon each task she performed.

We learned to listen to each other. That I

listen to her matters as much as the fact that

she listens to me.

The most important factor in the way that Allie helps me is this bond that has developed

between us. When I first picked her up, I asked about getting a second puppy so they could

have the company of one another. The woman said, no, if I did, they would bond with each

other rather than with me. That stuck with me, and when I began to marvel at the little ways

in which she helped me, I started doing some research. At the very beginning, I stumbled

across the fact that it is important for a service dog to stay as much as possible in contact

with their humanthis was important so that the two would bond. It was this fact that led to

me registering her as a service dog. She needed with me so that she would stay tuned to

me. Einstein said, Our task must be to free ourselves... by widening our circle of

compassion to embrace all living creatures and the whole of nature and its beauty. I know

that sounds metaphysical, but this embracing of her natural and good self, and all that she

offered, was, wellfreeing, which is an extraordinary thing when you have fibromyalgia.

So, the big question: What does she do for you? It is hard to explain. She doesnt help me

see, or hear. She doesnt pick things up for me, or open doors. In fact, I have purposely

NOT taught her to do those things, because while it is painful, I can still do it, and Id rather

force myself to move and bend if I can. What she does is both much more important and

much more difficult to explain and understand. She helps manage my pain and sleep. She

also helps me focus, be aware, be in the moment, which is very difficult for me. I easily drift

off and forget what Im doing and then I hurt myself. She also helps remind me of things

when I become absent-minded. If Ive forgotten to lock the door or left something on the

stove, she tells me. She monitors me and reminds me to

take breaks. She tells me to go to bed if Im up too late.

She steadies and stills me when Im dizzy or frazzled. Ive

taught her to lie on my back and warm it, and to walk on it,

massaging me with her little feet. She licks and massages

my hands and other small muscles that are so painful. She

is my flesh and blood fibromyalgia monitor, and she

believes her job in life is to look after me. She is, in short,

the reason I am still able to go to work each week.

Talk to the Animals

23

Laws and Other Specifics

There is a growing movement towards using service dogs for things beyond the now-

familiar seeing-eye dog. They help people who are deaf, monitor blood sugar, smell cancer,

help with mobility, aid in autism, and sense impending seizures. However, managing pain,

sleep and mobility are somewhat new, and since fibromyalgia is an invisible disability, we

still run into prejudice and obstacles. To register Allie as a service dog, I needed to become

public about my disability. This was very difficult for me, as I had studied seriously to work

as a conductor, and I was conducting one of the university bands. Conducting is already a

male field, and requires you to appear strong and able, so I had carefully hidden my

problems rather successfully. Being open about this was a paradigm shift for me, and there

were many around me who believed she wasnt really a service dog, just a dog I wanted to

bring to work with me. I didnt disclose at first, as I came to the decision gradually, but

eventually I decided to formalize the situation, as I simply needed to protect the bond we

had developed.

There were many problemsI didnt look sick, I didnt always need her help, but she is a

sentient being, not a tool that you can take out and put away, and I had to decide where to

take her and where not to take her. If I wasnt certain, Allie became uncertain and confused,

so I had to learn to plan ahead and practice certain situations. However, my condition was

worsening, so I pushed forward.

Here are a few things I learned. First, there is no standardized oversight for service dogs.

There are some accepted practices and many good organizations, but there is not a

government agency that oversees the industry. Registering is local, so some states and

counties will register your dog through animal control, but this is not standardized. Second,

by law, you can either be matched with a dog through an agency that specializes in this

(expensive), or you can train the animal yourself. Third, while you are allowed access by

law, I found that there were certain things I simply didnt have the energy to fight. I dont

take her into the grocery store, stores that sell food, or inside restaurants. I simply dont look

like I need her, and I dont want to have the fight. She is a small dog and cant lie at our feet,

or she will get stepped on, so she sits next to me or in my lap. This would not go over well in

most places with food, so I simply dont do it.

We are forging new territory at the moment: with fibromyalgia, we really use service dogs

differently, and we have very individual needs. http://www.iaadp.org/tasks.html is a site with

very good lists of service dog tasks for various

conditions, as well as suggestions for those of

us with specific needs:. At the end you will find

a list of nose nudge based tasks. I did teach

Allie to touch my finger on command, which

is the command you use to teach these tasks,

but I have not gone beyond that, as I dont

need her to do any of these things yet.

The ADA provides guidelines for service animals (see ada.gov/service_animals_2010.htm).

You will notice that places of business may only ask, is the dog a service animal required

because of a disability? and what work or task has the dog been trained to perform? I find

that my answer is completely unsatisfactory to most people, because they simply are not

used to dogs being used in this way. This is why I limit where I take her. I use the following

criteria for making my decisions about where I take her:

Talk to the Animals

24

1. Do I need her in that specific situation?

2. Will it cause undue burden on those around me?

3. Will the price of admission (i.e., all the questions I must answer and the dirty looks I

receive) be greater than my need for her at that moment?

4. Will my presence with Allie make it easier or more difficult for other people with

service animals?

A service dog should make life easier - a fight over her presence is not worth it to me, at

least at this time.

Challenges

My own pride. At first, I let people think I just brought my dog to

work. She was something of a department darling anyway, and was

incredibly socialized. I had a constant stream of visitors just to see

her. I legally registered her fairly early, but it took me longer to

come out about my health. Now I start most of my classes by

introducing her and my condition to the students, and they seem to

accept this. Because she is cute and very social, I let her socialize

when Im doing other things. I suspect if I had a larger dog, or one

that came from a proper trainer, I would not do this.

She wasnt perfect as a puppy, and I had to train her even as I continued to work and teach,

and I had to decide how I wanted her to act, as I had no model to copy. I had to make it up

along the way, and I am still learning things and having to make decisions about how I will

use her. I am not a very good animal trainer, but Allie is an exceptional dog. I contacted

several trainers to try and get help in training her, but none of them had anything to offer

except obedience training. I am fortunate that I had the support of most people in my

workplace, so they helped me to adapt and find solutions to the challenges. I am also

fortunate that Allie came into my life when she did, because it coincided with a worsening of

my fibromyalgia. I would not be able to continue to work (at my current capacity) without

her. With her help, I still perform at basically the same level, at least for now.

The next major challenge will be the people in your life. Some of them just want to spoil the

dog, even though you are trying to train her for a specific purpose. They will feed her at the

table, or engage her in play when you dont want them to. I worried about this at the

beginning, but eventually I just let it go. She still serves my purpose, and this makes the

people in my life happy. The other thing you will hear is oh, I should register my dog as a

service dog, too, then I can take her places with me. Just let it go. It is frustrating, but with

fibromyalgia, you must pick your battles, or you get sick.

Finally, a dog needs care. You cannot turn her on or off whenever you need her. You have

her all the time. Having a dog, even a service dog, is work and a major responsibility, and

you must take this into consideration as you plan your daily life.

Only you can make the decision about whether or not a service dog is

right for you. I hope some of what Ive shared will help you make that

decision. I expect that the next few years will see progress in training,

methodology, and public acceptance; and I hope that I can help move

the process forward toward making service dogs more accessible and

publically acceptable for people with fibromyalgia and other pain

disorders, and toward finding more ways that dogs can assist us.

Allie socializes with a friend's baby


25

So, you know you were supposed to be doing something but

you just cant remember what it was. Or, in the middle of a

conversation, you cant remember the words you need. Dont

necessarily put it down to age, working too hard, having an

overloaded mind or Fibro Fog. There are other common health

problems that can cause forgetfulness.

High Blood Pressure

The REGARDS study in the US found people with high

blood pressure perform worse in memory tests and their

memory shows greater deterioration over time. The study

involved more than 30,000 people over four years. The increase in blood pressure can

mean structural changes in the blood vessels, making them thicker and making it harder to

get blood around your body, says Dr Gavin Lambert, from the Baker IDI Heart & Diabetes

Institute. As a result, you can get organ damage. That can be in the brain as well and affect

your recall and cognition. So eat a balanced diet, maintain a healthy weight, exercise

regularly, dont smoke and if you are on blood pressure medication, take it as prescribed.

Chemotherapy

A study at Stanford University in the US found breast cancer patients who had

chemotherapy suffered some impact to the parts of the brain responsible for memory

and planning.

One of the potential undesirable side effects of chemotherapy is what we loosely call

chemo brain or chemo fog, says Dr Helen Zorbas, CEO of Cancer Australia.

It can be mild or more significant in effect. While theres nothing that can be done to help it,

I think just knowing its a common side effect is important for women and they should be

reassured that in most cases its mild and self-limiting.

Menopause

A 2008 study at the University of Illinois found a link between hot flushes and poor

verbal memory. The study followed other research that found about 40 per cent of

women report becoming more forgetful around menopause.

The more hot flushes a woman had, the worse her memory performance, says researcher

Professor Pauline Maki. Maki found women whose hot flushes disturbed their sleep suffered

even worse memory problems.

Dr Elizabeth Farrell, consultant gynaecologist with Jean Hailes for Womens Health, says

while there is no conclusive evidence that menopause triggers memory loss, women do

report feeling more muddled sometimes.

26

Thyroid problems

If you have hypothyroidism an underactive thyroid your thyroid gland doesnt

produce enough thyroid hormone. This leads to a slower metabolism and tiredness,

and can lead to some forgetfulness.

Hypothyroidism is more common after the age of 40 and affects about six to 10 per cent of

women and a smaller number of men.

When you have a medical condition that causes fatigue, its easy to become forgetful. But

when hypothyroidism is treated, people recover well and memory recovers, too, says Dr

Ronald McCoy, a spokesman for the Royal Australian College of General Practitioners.

Hypothyroidism can be treated with medication.

Long-Haul Travel

Memory can start to be affected after a flight lasting more

than four hours such as a Melbourne to Perth trip, McCoy

says. Its similar to people having a knock on the head and

suffering short-term memory loss. They recover but may not

remember what happened at the time, he says. People

function well at the time but the day later they have problems

recalling what happened at certain times.

Pregnancy

Its true pregnancy can affect memory. Well practised memory tasks, such as

remembering phone numbers of friends and family members, are unlikely to be

affected, says researcher Dr Julie Henry, who was involved in a University of New South

Wales study that found pregnant women do suffer some temporary forgetfulness.

Its a different story, though, when you have to remember new phone numbers or hold in

mind several different pieces of information. She says the upheaval that comes with

pregnancy may be the reason.

Vitamin B12 Deficiency

Vitamin B12 is essential for normal neurological function, says Denise Griffiths, a

spokeswoman for the Dietitians Association of Australia. Deficiency of vitamin B12

can result in cognitive changes, from memory loss to

dementia. Scientists believe vitamin B12 may safeguard the

myelin sheath a layer that insulates our nerves. If the sheath is

damaged it can affect the transmission of messages to

and from the brain.

Alcohol

Too much alcohol has a negative impact on the

hippocampus a part of the brain involved with recording and

storing memories.

Alcohol prevents the storage of the short-term memory into the

long-term memory, McCoy says. So people drink and function

but can lose memory of what happened during the time they were

drinking.

Did you know?

Studies this year found that the omega-3 fatty acids & an antioxidant found in green tea can help boost memory.

Research News

27

Get Wired!

In the first

randomized,

controlled trial of

cranial electrical

stimulation (CES)

therapy in patients

diagnosed with

FM, individuals

with FM were divided into three groups:

active CES device therapy, a sham

device, and usual care alone.

Those individuals using the active device

had a greater decrease in average pain

than individuals using the sham device or

receiving usual care alone over time.

Preliminary analyses of the functional

magnetic resonance imaging data on a

subset of six participants from each of the

two device groups show that individuals

using an active CES device had a

decrease in activation in the pain

processing regions of the brain compared

to those using a sham device.

The decrease in activation in the pain

processing regions may indicate a

decrease in neural activity in these

regions that may be related to decreased

pain. But, as this is the first study of its

kind this kind of therapy cannot

guarantee us less pain yet. Cranial

Electrotherapy Stimulators are available

but their worth to us has not been proven.

(Please do not use your TENS unit on

your head!)

Doctor: Fibro? No, You Have a Mental

Disorder!

Do you:

have a disproportionate thoughts about

the seriousness of your symptom(s)?

have a high level of anxiety about your

symptoms or health?

Devote excessive time and energy to your

symptoms or health concerns?

Almost everyone who has FM has had at

least one of these reactions especially

during the time before you get an accurate

diagnosis. It would be unusual not to have

serious concerns about your health when

youre experiencing symptoms severe

enough to disrupt your daily life and you

dont know what is causing them.

Well, guess what? You might have a

mental disorder, according to the soon to

be released 5th edition of the Diagnostic

and Statistical Manual of Mental Disorders

(DSM), commonly known as the DSM-5.

The DSM is published by the American

Psychiatric Association and is the

standard classification of mental

disorders. It includes the diagnostic

codes, a set of diagnostic criteria and

additional information on each disorder.

The problem with the DSM-5 is there is a

new diagnostic category called Somatic

Symptom Disorder. According to the

diagnostic criteria, a person can be

diagnosed with Somatic Symptom

Disorder (SSD) if for at least six months,

they have had one or more symptoms that

are distressing and/or disruptive to their

daily life, and they have one of above

listed reactions.

According to these criteria, 1 in 6 people

with cancer and heart disease; 1 in 4 with

irritable bowel and FM; and 1 in 14 who

Research News

Have you visited the new

FIBROMODEM website yet?

Research News

28

are not even medically ill, will be

diagnosed with SSD. Are you kidding

me?!?

For us, this could mean that if any one

doctor at any point in time feels like youre

a little too concerned about your

symptoms or your health, he/she can

diagnose you with SSD and you will

forever after be labelled as having a

mental disorder. And once you have that

label, how seriously do you think other

doctors are going to take your symptoms?

How much time do you think doctors will

spend trying to identify the physical cause

of your pain if they think you have a

mental disorder that makes you overly

concerned about your health?

DSM-5 is about to go to the printers and is

scheduled to be released in May 2013

Our best hope is through Allen Frances,

MD, who was the chair of the DSM-4 Task

Force. Dr Frances suggested simple

wording changes in the DSM 5 definition

of SSD that would have tightened it

significantly and reduced confusion at the

difficult boundary between medical and

mental illness.

His proposed new criteria set would have

made it much clearer that the persons

concern about physical symptoms had to

be excessive, maladaptive, pervasive,

persistent, intrusive, extremely anxiety

provoking, disproportionate, and

consuming enough time to cause

significant disruption and impairment in

daily life. He has written an excellent

article in Psychology Today on the

dangers of adding SSD to the DSM-5:

Mislabeling Medical Illness As Mental

Disorder.

We need to get the press, insurance

companies, and our elected officials

involved in this issue. If Dr Frances can

show the press that thousands of people

are reading and commenting on his

articles, the press may be persuaded to

take an interest in this issue.

Elected officials and insurance companies

may take an interest if they can be made

to see that a diagnosis of SSD will lead to

added Medicare, Medicaid, and health

insurance costs in the form of unneeded

therapy and psychotropic drugs. In

addition, this misdiagnosis raises the risk

that underlying physical causes of an

illness will be ignored and this may lead to

an illness going undiagnosed until the

point when treatment will result in even

more costly medical care. This will drive

up health care costs for both government

and insurance companies.

If you want to get involved, heres what

you can do: share this article with others;

contact members of the press (especially

medical reporters such as Drs Sanjay

Gupta or Nancy Snyderman); and contact

your elected officials. I encourage you to

click on the link to his article, make a brief

comment, tweet his article and/or share it

on Facebook, to support his stand. The

more page views and comments he has,

the better his chance of persuading the

editors of the DSM-5 to make a last-

minute change.

Additionally, you can contact Dr David J.

Kupfer the Task Force Chair at

[email protected]. Dr Joel E. Dimsdale

head of the Somatic Symptom Disorders

Work Group can be contacted at

[email protected].

Fibromyalgia

Awareness

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living well with fibromyalgia vol 2; issue 1

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