Volume 2: Issue 1 March 2013
’ Winner of the
Feeling Fibro Fotos Competition
2
3
This Issue 5
Fibromyalgia Awareness 5 6 8 9 12
Happy Fibromyalgia Awareness Day Milestones in Fibromyalgic History The Fibro Show I Have Fibromyagia Can we Really Learn about Chronic Illness from the Bible?
13
FM Profile Introducing...The Fibromyalgia Crusade
PERSONALLY
15
Dawn from SIN Jewellery shares her FM story
18
Lots of People Talk to the Animals The Story of One Service Dog
Regular Features
25
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
Blaming Fibro Fog
4
What I have to say
email: fibromodem@fibromodem.com 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: fibromodem@fibromodem.com Š Copyright FibroModem 2012 The views and opinions expressed here are not necessarily those endorsed by FibroModem . Advertising policy statement FibroModem does not necessarily recommend the products and services advertised here. Please do not assume that anything advertised in these pages has been cleared, vetted or in some way approved by FibroModem. Please exercise your own judgement about whether the advertised service or product is likely to help you personally and, where appropriate, take professional advice from your doctor or health professional before purchasing. Advertisers Should you wish to advertise a product in this newsletter, please contact FibroModem at admin@fibromodem.com.
4
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 dawn…And 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 1800’s 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.
5
MILESTONES IN FIBROMYALGIC HISTORY
6
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 neurohormonal 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.)
7
Fibromyalgia Awareness 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
8
Fibromyalgia Awareness
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.
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...
9
Fibromyalgia Awareness
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.
10
Life of Pain
Fibromyalgia Awareness
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
Ashley Rae Castilleja
11
Fibromyalgia Awareness
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. Job’s 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.
12
Fibromyalgia Awareness 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 family’s 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 Job’s 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 one’s priorities and perspective. Job’s story ends with the appearance of God, Job’s 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 patriarch’s 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 (Copyright©1973, 1978, 1984 by International Bible Society, All Rights Reserved), and only quoted where indicated exactly by the above symbols.
13
Fibromyalgia Awareness
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 sun’s 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, memory’s gone Back to bed I think – another day done.
Heather Jo Bushnell
Make Fibromyalgia VISIBLE with this Facebook cover photo
14
Fibromyalgia Awareness
FM PROFILE
Introducing...The Fibromyalgia Crusade 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 it’s 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, I’d been pecking away at for a few months
15
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.
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! It didn’t take long for me to assess a gaping need within the community. The struggles I’d had finding a doctor to take me seriously when all my blood tests kept coming back normal was not mine alone. I
Fibromyalgia Awareness wasn’t 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 wasn’t 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 didn’t 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 wasn’t 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 didn’t 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 wasn’t 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. I’ve watched them take their power back by finding a doctor who is on their side. They’ve given up bad things and started doing good things and endure life’s trials with a little more ease. I’ve also learned how incredibly individual the Fibromyalgia experience is. It’s 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/. Leah’s 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 16
Fibromyalgia Awareness
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/)
SPA FIT Firming & Toning Gel-Cream Massager
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.
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.
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 Massage Oil
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.
17
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
Click HERE
Product: BIOFREEZE
to go
Reviewer: Kim Waugus
straight to the SALE
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 it’s 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 haven’t been evaluated for effectiveness. Arnica is a pain reliever, boswellia an anti-inflamatory, aloe is soothing, burdock root another antiinflammatory, 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. I’ve 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.
page
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 trickled down. And smiled wide to be alive instead of 6 feet underground.
Melissa A. Hernandez
LHJ194
18
Personally
Product Reviews
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. It’s scary. Now that I know that I’m not, I’m doing much better. I’m able to be calm about the symptoms that I experience, therefore I stress less and, in turn, hurt less. I’ve 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 isn’t 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. It’s inspiring and uplifting to share one’s 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 don’t make a lot of money, but I make a difference to others and work creatively, which are both so important in life. I’m 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 can’t make it in. My customers have been so understanding! I do mostly custom work, but I do sell some one-of-akind pieces at a local place situated just down the street from my studio. I’ve also become involved with Habitat for Humanity and I’ve started a jewellery guild in our community.
19
Personally – personal accounts of FM battles
What advice would I have for others with Fibro?
Routine is key - This isn’t easy for me as I’m so-o-o-o-o-o not a routine girl. And I’m naturally a nighthawk. But I’m trying a routine and it helps when I do follow it. Work on your diet. I’ve gone gluten and lactose free, which has helped my stomach issues & IBS. Seek support. I’m so lucky that my husband, family and friends are supportive. Not everyone has that. If you don’t, seek it where you can get it. Find a doctor that will treat Fibro. I used to have one who didn’t really believe in it. Now I have a specialist and a family doctor who work together and support me in my treatment options. I’ve 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. We’re all different. Exercise. Stretching and yoga help me a lot. So does slow walking for 5-30 minutes. I’m not perfect. I don’t do this as often as I should, but when I do, I feel a difference. Quit worrying about what others think. The best quote I’ve 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 can’t 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 I’m not dying. I’m very alive. For that, I’m so thankful. I don’t want to just exist. I want to LIVE.
Dawn’s 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
20
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.
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 I’d 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 Allie’s picture and knew immediately that she was “the one:” there was something in her eyes—even in an online photo—that spoke to me. I arrived at the rescue an hour early just to make sure no one else got her. And Diana with a baby llama at a petting zoo in that is how it all began.
How Does the Service Dog Help?
Venezuela (pre-Allie) - animals have always been very healing for her.
We clicked immediately. I bought a crate for her and tried to settle her into the soft nest I’d 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 wouldn’t stop. She would only sleep snuggled up with me, no matter how many tricks I tried. That is when something amazing happened—I 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
21
Talk to the Animals into my arms and hug me—one 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 me—nudging 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 something—take 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. Lots of people talk to animals.... Not very many listen, though.... That's the problem. Benjamin Hoff, The Tao of Pooh
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 human—this 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, well…freeing, 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 doesn’t help me see, or hear. She doesn’t 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 I’d 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 I’m doing and then I hurt myself. She also helps remind me of things when I become absent-minded. If I’ve 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 I’m up too late. She steadies and stills me when I’m dizzy or frazzled. I’ve 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.
22
Talk to the Animals
Laws and Other Specifics There is a growing movement towards using service dogs for things beyond the nowfamiliar 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 wasn’t really a service dog, just a dog I wanted to bring to work with me. I didn’t 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 problems—I didn’t look sick, I didn’t 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 wasn’t 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 didn’t have the energy to fight. I don’t take her into the grocery store, stores that sell food, or inside restaurants. I simply don’t look like I need her, and I don’t want to have the fight. She is a small dog and can’t 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 don’t 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 don’t 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:
23
Talk to the Animals 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 I’m doing other things. I suspect if I had a larger dog, or one that came from a proper trainer, I would not do this.
Allie socializes with a friend's baby
She wasn’t 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 don’t 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 I’ve 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.
24
Fibromyalgia Awareness
So, you know you were supposed to be doing something – but you just can’t remember what it was. Or, in the middle of a conversation, you can’t remember the words you need. Don’t 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, don’t 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 there’s nothing that can be done to help it, I think just knowing it’s a common side effect is important for women and they should be reassured that in most cases it’s 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 Women’s Health, says while there is no conclusive evidence that menopause triggers memory loss, women do report feeling more muddled sometimes.
25
Thyroid problems If you have hypothyroidism – an underactive thyroid – your thyroid gland doesn’t 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, it’s 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. “It’s 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 It’s 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. “It’s 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.
26
Research News
Research News
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.
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 you’re experiencing symptoms severe enough to disrupt your daily life and you don’t 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.
(Please do not use your TENS unit on your head!)
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.
Have you visited the new FIBROMODEM website yet?
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
27
Research News
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 you’re 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 person’s 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
28
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, here’s 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 lastminute change. Additionally, you can contact Dr David J. Kupfer – the Task Force Chair at kupferdj@upmc.edu. Dr Joel E. Dimsdale – head of the Somatic Symptom Disorders Work Group – can be contacted at jdimsdale@ucsd.edu.
Fibromyalgia Awareness Wish
1 2 3 4
Purple Silicone Awareness Bracelet - $2.00
HOPE FAITH LOVE available at shop.fibromodem.com
Giant Purple Crystal Butterfly Safety Pin - $12.00 available at shop.fibromodem.com
Purple Sparkle Shoes (purple flats) - $36.95 available at thepurplestore.com
5
Backless Purple Chaise Lounge - $580.00 available at thepurplestore.com
A CURE - PRICELESS