LIVING WELL with FIBROMYALGIA

with Fibromyalgia

September 2012

Volume 1: Issue 2

Living Well

Pain – from Head to Toe

Why? My Body My Choice The Happiness 1 Principle

The link between mediation & wellbeing

Summer Heat vs Winter Chills Which season is the worst for pain?

This Page

and many other positions (full page, half page, quarter page & â…› page)

Get in on the ground floor with advertising to fit your budget

4 issues per year Email advertising at fibromodem@bigpond.com for the current advertising price list

What is Pain?

5

This Issue 7

PERSONALLY

Julie Raworth shares her battle with Fibro & other invisible illnesses.

FM Profile

15

11

Who is Fibromyalgia Wellbeing?

18

A Quiet Mind A link between meditation and wellbeing

19 SUMMER vs WINTER

21 23

Pain – From Head to Toe

My Body My Choice

PAIN

Feeling pain?

Exercise!

Why does EVERYTHING hurt?

28

31

The Happiness Principle

An Introduction to the Difference Between Fibromyalgia & Chronic Myofascial Pain

33

Regular Features 3

What I Have To Say

Understanding Pain

4

POEM – Untitled by Melissa Hernandez

4

FibroModem Girl

9

What You Had To Say

11

From FACEBOOK

21

POEM – The Pain Inside Me by Susan Hemingway

25

Post for My Niece – Linda B. Mason

26

Research News

35 The Wish List

3

What I have to say

email: fibromodem@bigpond.com blog: www.fibromodem.wordpress.com Facebook page: www.facebook.com/FMawareness2012 Twitter: @Fibromodem Shop at: www.cafepress.com/Fibromodem 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@bigpond.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 3 FibrModem at fibromodem@bigpond.com.

Untitled (5/30/12) I opened the blinds to see the sky From this dreaded bed I lie My soul wrestles with me inside But my body is lifeless like a corpse bride I dream to feel the blades of grass Caress my bare feet from beneath To feel the wind gently kiss my cheek The way it makes the tree branches dance I wish to touch the waves in the pools of blue and feel the water, fresh and cool One day I will be strong again This bed and I will no longer be the best of friends I will roam wild and free and let nature take a hold of me A bird, a bee, a butterfly Not in a bed do they lie Free and proud they fly with ease And soar with grace among the trees This is where I long to be

Melissa Hernandez

College of Natural Therapies EastWest College offers four qualifications for local and international Students.    

Certificate IV in Massage Therapy Practice Diploma of Remedial Massage Diploma of Shiatsu and Oriental Therapies Diploma of Reflexology

Government funding available for eligible applicants

Our teachers bring a wealth of clinical experience from running private practices, together with the rich diversity of their national and international training backgrounds.

The delivery of units of competency cover a variety of formats including direct hands-on training, supervised student clinics, workshops, handbooks, community events and open days.

EastWest College has produced successful graduates from over 24 countries.

We are renowned for our warm welcome to people wishing to study Shiatsu and Massage in Australia and we would be pleased to welcome you.

Course details can be obtained by emailing info@eastwestcollege.com.au Or call

61 (03) 9528 1212

Further information on studying in Australia can be obtained from www.studyinaustralia.gov.au or www.immi.gov.au Shiatsu Australia Educational Services trading as EastWest College

EastWest College is a registered course provider with CRICOS (Provider number 02394E).

4

What is PAIN? The ‘Gate Control Theory of Pain’, published in 1965 in the journal Science, began a revolution of clinical research which changed the way we think about pain.

Up until 1965, we had a ‘hard wired’ concept of pain as being like a telephone cable system with electrical impulses running from the skin surface to spinal cord & then to brain where a bell was rung ‘when the pain arrived’.

The Gate Control Theory proposed that pain could be ‘tuned in or tuned out’ as a result of powerful modulatory pathways which descended from the brain to the spinal cord, depending on the circumstances. Subsequent research extending up to the present day has confirmed these revolutionary ideas & built upon them.

The research findings helped to explain some previously very puzzling observations in humans. For example, Professor Henry Beecher, Foundation Professor of Anaesthesia at Harvard, carried out pivotal research on injured soldiers in World War II: soldiers with severe injuries often reported no pain at all immediately after the injury. In many cases he found the soldiers regarded the injury in a positive light since they would shortly be decorated & repatriated from the front line. He made the very thoughtful statement “it is not the injury per se that determines the pain, but also the meaning of the injury”. Thus even in so-called acute pain situations following surgery or injury, the person’s experience of pain will depend not only on the injury itself; individual & external factors that impinge upon the brain & spinal cord & thereby activate brain & spinal processes that ‘modulate pain’, in a manner similar to ‘opening or closing a gate’, are crucial.

In order to make all health professionals aware of this profound discovery, the International Association for the Study of Pain (IASP) assembled an international multidisciplinary group charged with developing a definition of pain. The end result was as follows: “Pain is an unpleasant sensory and emotional experience, associated with actual or potential tissue damage, or described in terms of such damage.”

This definition makes it clear that pain is a subjective experience rather than just a sensation in humans. Thus all pain is an individual human experience that is entirely subjective & that can only be truly appreciated by the individual experiencing the pain.

Nevertheless over the last two decades epidemiological & ‘risk factor’ research has provided very strong support for a ‘bio-psycho-social’ model of pain. This model proposes that human pain is multi-faceted by its very nature & can be broadly

6

described as comprising three components, namely a physical (‘biological’) component which may involve nociceptive &/or neuropathic factors; psychological or even psychiatric factors; & environmental factors.

This is an artificial separation since a significant number of factors can operate across one or more of these areas.

Therefore, in order to comprehensively assess any person suffering from any type of pain, it is important to assess the physical, psychological & environmental factors that may be operating. This inevitably may mean that more than one category of health professional will be required to make a full assessment. Also it may be necessary & even desirable for such health professionals to communicate with each other directly, in order to weigh up the relative contributions of the different factors that may be operating, thereby enabling selection of the most appropriate treatment or treatments in an interdisciplinary approach.

Chronic pain is conventionally regarded as being ‘pain that continues to be present more than three months after surgery or an injury or from various disease or other causes’.

Ongoing perception of physical pain may play a key role in some patients with chronic pain & may be amenable to direct treatment, eg, hip joint replacement for severe osteoarthritis of the hip, etc. However, even in such patients it is likely that multiple factors contribute to the pain. In chronic pain survivors, much evidence now points to chronic pain becoming a ‘disease in its own right’. In this concept, regardless of the underlying disease, injury or other event that triggers chronic pain, the pain itself is associated with physical, individual & external changes that represent an individual disease process. This is an important concept: it draws attention to the fact that persistent (chronic) pain needs to be treated in the same way as other chronic

diseases, rather than regarding it as ‘only a symptom’. One result of such changes is that the nervous system becomes sensitised & responds in an excessive way, not only to noxious stimuli, but also to non-noxious stimuli such as touch & light pressure.

Thus new treatments for chronic neuropathic pain could focus on the cause of the ongoing pain – the overactive supporting neural network (glia).

If chronic pain is regarded as a disease, the following approach is utilised: 





Identify & treat any primary pathology (e.g. replacement of an osteoarthritic hip) Identify & treat the secondary pathology (consequences of chronic pain e.g.

CNS sensitisation, depression, fear avoidance behaviour) Identify & treat tertiary pathology contributors (e.g. environmental factors).

It is often necessary to use a multi-modal approach to treatment. This will often require a team approach utilising health care professionals from different disciplines.

This multi-modal approach was developed by the Founding Father of Pain Medicine, Prof. John J Bonica, who was charged with treating injured soldiers after World War II & recognised that he was incapable of achieving satisfactory outcomes unless he used a multi-modal approach, drawing upon a number of different health disciplines. This insight led Bonica to establish the first multidisciplinary pain centre. It also stimulated Bonica to found the International Association for the Study of Pain in 1974, which emphasised the vital importance of communication among health professionals & between basic scientists & clinicians.

Personally

Personally – personal accounts of FM battles

Julie Raworth is a Counselling Psychologist, based in the UK. She is a Chartered Psychologist with the British Psychological Society; a member of the British Association for Counselling & Psychotherapy, & the Health Professions Council. She also suffers from Irlens Syndrome, INeurodiversity loved learning & that the rain was pretty awful & it was cold & Fibromyalgia. studying, verging on & uncomfortable. being a nerdy teachers’ This shared moment with the female gorilla pet. Back then, I would have been, what is in the wild has never left me. Her picture is now termed, a member of ‘Glee’ club - my now a tattoo, placed discreetly on my body, lunchtimes were spent singing with my for me to remember that if I want something friends in the music room. I never got into passionately enough, then I can achieve it, detention, I took on extra homework in regardless of how hard & uncomfortable it areas I struggled with & revised for exams. may be to get there, & regardless of the Yet, I received report after report stating risks I have to take. “she has great potential if she just tried It was not long after this trip that, as result harder”. of an accident in Africa, I found myself with By the end of school, I decided to stop a physiotherapist & being diagnosed with worrying about a career & worked just to FM, merely by chance. There was little save money to travel. Somewhere in my known about the condition then but what heart I knew I had to go to Africa. I had there was made sense to me: waking up always had an affinity with monkeys & drowsy & blurry, the aching in my legs, the apes, & dreamed of being Dian Fossey, pain & weakness in my wrists. even for a few hours. So, I took on two jobs, When I finally returned home after saved my money & embarked on a 6 week travelling, I returned to my childhood camping safari on the back of a lorry dreams of being a nanny; but, I felt I around East Africa in 1997, despite the needed to do more than be a child minder troubles in Rwanda. & was more fascinated by the damage that I will never forget the moment with my first was being done emotionally & female gorilla, sitting psychologically to the children of rich land quietly eating her owners. bamboo. We had Because of my previous grades, I chose to been warned not to enrol in Open University. As always, I look the gorillas in believed I had it in me: I ignored all the the eye. However, as warnings & questions of whether I was I sat with her, the rain academically up to it. I knew my passion & came down heavily. heart meant I was up for it; & for 6 years, I As I huddled under worked full-time with autistic children while my raincoat, she did I completed my degree. My grades were the same, bringing nothing special but I passed. Having also her body close in. At this point I looked her achieved an Advanced Diploma in in the eye, & she looked directly at me – Counselling skills it was a natural path to this was the moment that we empathised pursue Counselling Psychology.

7

I never really understood what being a Counselling Psychologist meant, but instinctually I knew this was what I should be doing. This can be something very difficult to explain to some people but, having spent my twenties lacking direction & purpose, verging on a breakdown, I was always going to follow this instinct. Despite my low grades, I was accepted into the course. I never really struggled with the practical side of my studies, although it was extremely daunting at first. But by the end of the second year, my academic deficiencies were no longer deemed acceptable. I was failing essay after essay; & I was starting to really suffer with FM, particularly with the pain in my hands. As a result I found myself with the dreaded email that stated that my studies had been ‘terminated’.

I had spent 7 years of my life working towards my destiny, my vocation - if I didn’t have this, then what was there?

I appealed the decision & it was approved. I was offered a new tutor to help remedy the problems. However, although I was articulating myself clearly & knew what I was talking about, this was not being translated into my written work.

It was not until I submitted my research title for my Masters of Science that my new tutor noticed the subject that I had chosen – Fibromyalgia. He had a client with FM so he was also interested to hear about how it affected me. The subject of my academic difficulties came up & it wasn’t until then that anybody had suggested a possible link between my fibromyalgia & my difficulties. With so much scepticism around the illness I had not even dared to investigate it myself, & would not have known where to start.

Because of the brain fog caused by my FM, I was referred to an Educational Psychologist. Finally I had a name for the

variety of difficulties that comes under different realms of learning disabilities Neurodiversity. This is what had caused the extreme difference in percentages between my being able to obtain meaning from the written word (which was far below average) & my understanding of the meaning of words when explained verbally by myself (which was well above average). We also identified difficulties with structuring & colour sensitivities, & it was suggested I may be suffering with Irlens syndrome. This is an extreme sensitivity to specific colour rays that meant that my eyes were desperately trying to look away from a page of writing, thus blocking the process of gaining meaning from the words. Unlike dyslexia, Irlens sufferers are sensitive to a specific colour unique to them. Following a referral to a specialist, I eventually came out with a set of pink coloured tinted glasses. Now the words settle down on the page & the meaning can be absorbed. However the brain fog still interferes with this process when I am tired.

Luckily, having now been diagnosed with Irlens Syndrome & Neurodiversity (as well as FM), I received all the support I needed. I was provided with equipment in my home to assist with my FM, various workstations, & speech/text programmes where I could listen to my text books & what I had written, rather than contend with the process of reading. I was also provided a programme that enabled a more visual approach to structuring essays, rather than it being about words that I still feel somewhat overwhelmed with.

Returning back for the final two years, I sailed through the essays with much improved grades. The unconscious anxieties related to my Irlens Syndrome & processing problems disappeared,

8

Personally – personal accounts of FM battles

dissolving the block completely that I had put up. Most dramatically, the pain in my hands disappeared which I believed was a psychosomatic manifestation of the anxiety I had of the written word & block it created between my mind & my keyboard.

On March 2nd 2011, I graduated as a Master of Science in Counselling Psychology. In autumn 2011, I became a Chartered Counselling Psychologist Living with a disability or illness can make us stronger people than those who are naturally gifted & find it all easy, as we will always have something to contend with & succeed against. I know that, whatever happens in my life, I have the strength & determination to overcome whatever is put in front of me, although getting a bit of a break from the hurdles would be nice occasionally.

Bridges &

Whenever I have lost strength & feel drained of inner resources I look at the picture of that gorilla & remind myself that my dreams are always achievable.

Julie’s work is now available on Amazon: AN INTERPRETATIVE PHENOMENOLOGICAL ANALYSIS OF THE EXPERIENCE OF THERAPISTS WORKING WITH CLIENTS WHO HAVE FIBROMYALGIA Julie’s findings suggest that therapy should focus on self-expression, perception, complex social behaviour & lifespan, as well as being able to tolerate the complex, elusive, & unknown nature of FM. It is suggested that the Counselling Psychologist may be best equipped to deal with these factors due to their psychological & broad theoretical training as well as advanced counselling skills. It is acknowledged that there remains a strong governmental influence over the limited use of therapies other than CBT for the likes of FM.

Have you got a story to tell? Share it with us by emailing fibromodem@bigpond.com

What You Had To Say

Pathways Bridges & Pathways Institute Inc is working for Australians to •

improve services affected by Fibromyalgia Syndrome and associated conditions

•

reduce the time gaps between research and access to the latest treatments

•

improve access to the best information and services

https://www.facebook.com/bridgepath

This is the area where I will be printing anything you might have said about the last issue – it could be bad, or it could be good. I don’t plan to discriminate (except no personal attacks will EVER be printed).

Most of the negative feedback received from the last issue was about teething issues:   

9

I will not be publishing your email addresses to the world – it was suggested to me to use the bcc: field when sending the e-newsletter.

I apologise to anyone who was upset about their email address being accessible to others – I hadn’t even thought about that part, yet!

As you may have noticed, I am sending both the link and the PDF. It seems that the wonderful flip-book format (which I so love) does not appear on I-Pad.

10

FM PROFILE

Personally – personal accounts of FM battles

Dee Campbell is Fibromyalgia Wellbeing.

I have a background in community services that spans over 20 years in total. I`m passionate about creating `community` and developing networks for those who feel alone and/or isolated due to illness, disability or life challenge. Although we feel so alone, we can stand together collectively to progress positively.

Hopefully, raising societal awareness about this condition (and impacts) will lead to better understanding and acceptance, thus flow on to better diagnosis processes, more research, improved intervention and treatment, better access to a wider range of support and (multidimensional) services that can better meet individual needs.

I undertook the writing and self-publishing process (approximately 10 months ago), to (hopefully) fill a void. When I was most challenged (5 years ago) I would have loved to connect with something like this, as perhaps it may have helped me adjust a little easier to my new `reality` with chronic illness – and keep my HOPE alive. We are often informed about the kinds of things we `need to do` and try. However, at that time - I struggled to come across a resource/book written by an everyday person that was able to say:

“yes, I have done all those things and it`s helped me to come out the other side.”

To not only demonstrate coming out `the other side` – but to be able to say that all their efforts had actually made a difference to their condition and most importantly, to their wellbeing.

11

`Fibromyalgia Well-Being` by Dee Campbell (Balboa Press) Primarily, I hope the book may provide some comfort, reassurance and validation to others travelling with not just Fibromyalgia, but also other `invisible illnesses`. To encourage and empower others, and to enable them to move forward – with their own health management, their coping and their personal learning, adjusting, changing and growing.

The other reason why I embarked on this project was to use the book as a platform for awareness raising.

To provide carers, family members, health professionals and other interested people - with an insight as to how it is for us – living and coping with this MULTI system condition, called `Fibromyalgia Syndrome`.

All of this will assist long term management and thus improve the `reality landscape` and enable better quality of life and participation for all of us affected by these `invisible conditions`. BUT, together with all of this, we must also empower ourselves and believe there are many strategies and approaches that we can implement ourselves – to help our own management and care!

I hope that by getting this book `out there`, it may provide some fuel and better support existing vehicles and work towards improved outcomes. BUT, I hope it will also assist the people that travel this very lonely, confusing, challenging, overwhelming, disappointing, distressing, unpredictable, frustrating road. `Fibromyalgia Well-Being` is an honest and non-clinical account of my personal journey. A journey which demonstrates an approach that encompasses both pharmalogical and nonpharmalogical interventions and nurtures the importance of embracing physical – psychological – spiritual balance. As we strive to remain empowered in our own situation, we will find our strength and realise our true character!

Let’s get the book out there and MAKE SOME NOISE!!

Please also join our Facebook community `Fibromyalgia Wellbeing`.

Fibromyalgia Wellbeing (the book) was launched on the 14 th July 2012. Reviews of the book are available on line via Balboa Press and Amazon.

At the launch, from left to right: Councillor Bernie Keane (elected member, City of Tea Tree Gully), Mr Tony Zappia (Federal member for Makin), Dee, Mr Paul Barbaro (Deputy Mayor, City of Tea Tree Gully) and Councillor Graeme Denholm (elected member, City of Tea Tree Gully).

12

From FACEBOOK From Fibro Fighterz at https://www.facebook.com/fibro.fighterz Fibro Doctors Chose Pfizer Over You

by Kristin Thorson, Editor, Fibromyalgia Network Do you like Lyrica, Cymbalta or Savella? Have any of these meds cured you? Or has cognitive behavioural therapy been the answer for your fibromyalgia symptoms?

According to the FibroCollaborative, a program funded by Pfizer and made up of 25 physicians, these would be your only options.1 This is what they promote as the roadmap to success, but actually, it is the roadmap to doom for all fibromyalgia patients.

You may have initially viewed the FDAapproval of Lyrica as a milestone, but chances are you did not know what was brewing behind the scenes. Soon after the FDA-approval of the three drugs, new criteria for fibromyalgia appeared in print in early 2010.2,3,4 They don’t require a doctor to examine or talk to you; identifying your illness has been reduced to filling out a 2-page form.

The criteria were disguised as an easier way for primary care providers to diagnose fibromyalgia, but more than likely, it expands the diagnosis to anyone who has muscle pain and trouble sleeping.

This new way to sell more drugs (even though each one only works in one out of 8 to 15 patients) can be credited with one of the big chiefs of the FibroCollaborative, Daniel J. Clauw, M.D., of the University of Michigan in Ann Arbor.5 Clauw is the author of many research papers, but lately, the majority have just been about pushing certain drugs. He and his Pfizer-affiliated colleagues want all primary care doctors to know there are three drugs for treating fibro: Lyrica, Cymbalta, and Savella. Although many medicines are available to treat you, few others are mentioned.

13

While everyone thinks of researchers as working on the patient’s behalf, when it comes to the 25 members working on Pfizer’s behalf, it is hard to believe that your interests will trump profits. But don’t think this money-making plan was solely cooked up by Clauw. He shares the podium with: Lesley M. Arnold, M.D., of the University of Cincinnati, Bill H. McCarberg, M.D., of Kaiser Permanente, L. Jean Dunegan M.D., JD, of Brighton, MI, and Dennis C. Turk, Ph.D., of the University of Washington.

What’s more, there are another 20 members who dance to Pfizer’s tune that deserve acknowledgment as well: Kenneth Barrow, PA–C, MHS – Wilmington, NC *Lucinda Bateman, M.D. – Salt Lake City, UT Larry Culpepper M.D., MPH, – Boston University Cassandra Curtis, M.D. – Greenfield, IN Yvonne D’Arcy, M.S., CRNP – Johns Hopkins Kevin B. Gebke, M.D. – Indiana University *Robert Gerwin, M.D. – Bethesda, MD *Don L. Goldenberg, M.D. – NewtonWellesley Hospital James I. Hudson, M.D., ScD – McLean Hospital Rakesh Jain, M.D., MPH – Lake Jackson, TX Arnold L. Katz, M.D. – Overland Park Medical Center, KS Andrew G. Kowal, M.D. – Burlington, MA *Charles Lapp, M.D. – Charlotte, NC *Michael McNett, M.D. – Chicago, IL *Philip J. Mease, M.D. – Seattle, WA Danielle Petersel, M.D. – Pfizer, NY *I. Jon Russell, M.D., PhD – San Antonio, TX Stephen M. Stahl, M.D., PhD – San Diego, CA *Roland Staud, M.D. – Gainesville, FL Alvin F. Well, M.D., PhD – Oak Creek, WI

Those with an asterisk used to advocate for fibromyalgia patients (along with Clauw), but how can anyone view their actions with integrity given their alliance with a drug initiative that only promotes three medications for treating fibro? If you need something to help you fall asleep at night, you best get hip with Lapp’s behaviour modification program.

from Exceptional Living at https://www.facebook.com /MyExceptionalLiving

Perhaps it is good news that Lapp’s behaviour program is free on his website. Of course, once you have given all of your contact details on the website, who is to say they won’t get passed along to Pfizer?

While talented physicians and researchers have placed their loyalty to the drug company, rather than remaining independent-minded scientists, the question is: why? There had to be a draw to the drug company’s scheme. Money? Power? Or maybe a little of both? Regardless of the reasons, it appears that treating patients is no longer their primary interest.

These days, one may automatically assume patient organizations are working in collaboration with the drug companies. It can be a sneaky way of connecting you to Pfizer’s initiative, to collect info about you as a fibro consumer in order to improve their marketing strategies. Is that really what you want as a patient, to be viewed as marketing income from the organizations you trust to have your back?

from FibroTV at https://www.facebook.com /FibroTV

Take for example, the National Fibromyalgia Association (NFA), who even in the midst of legal troubles keeps sending out emails to patients to collect more data on you. They have a disconnected phone number and an address that is nothing more than a box. Now the National Fibromyalgia and Chronic Pain Association (NFMCPA) out of Utah has taken over the patient-related reins of the NFA. They promote the FibroCollaborative on their website, so perhaps they sit at the same table with the NFA, the American Chronic Pain Association, and others to help Pfizer’s bottom line.

This is not the case for the Fibromyalgia Network (or the American Fibromyalgia Syndrome Association).

There is a price to pay for not being a puppet on Pfizer’s or anyone else’s string. Although the Network makes lots of info available for free, we have to charge for our publications. That’s the price you pay for objectivity.

1. Arnold LM, Clauw DJ, et al. Mayo Clin Proc 87:488-96, 2012.

2. Wolfe F, Clauw DJ, et al. Arthritis Care Res 62:600-10, 2010.

3. Wolfe F, Clauw DJ, et al. J Rheumatol 38:1113-22, 2011.

4. Arnold LM, Clauw DJ, et al. Mayo Clin Proc 86:457-64, 2011.

5. Clauw DJ, et al. Mayo Clinic Proc 86:907-11, 2011.

College of Natural Therapies Supervised Student Clinic

One hour treatments first session $15 • Shiatsu • Massage • Reflexology • To book, please call

9528 1212 475 Hawthorn Road, Caulfield South Victoria, Australia

14

Diane-Marie Williams was born in Vermont, and raised in the Eastern Townships of Quebec, Canada. She is engaged to Michael Dussault-Jensen (the most wonderful man in the world).

Diane-Marie was diagnosed with fibromyalgia in 2010. She is mother/stepmother to 4 daughters and a son, and grandmother to 3 beautiful grandchildren (a grandson and 2 granddaughters)

I suppose it’s like they say, unless you have walked in another man’s shoes, you can’t understand what it is like to be him. I believe that statement has become a bit more powerful today as human beings around the world fight for their rights in cries of anguish because their govenments “don’t understand”.

The use of opiates “has The prescriptions of opiates for long-term use has become grown dramatically from much too common in our society today. Todays doctors 112 million doses seem to have become quite complacent when it comes to prescribed in 2006, to 131 million in the U.S. today, prescribing opiates to their patients; however, offering according to a national information on the side effects is commonly neglected.

It may be difficult to understand the consequences of opiate

usage unless you have experienced it: Try to imagine the anxiety of waking up in the morning and not knowing what day it is, or worse than that, where you are. Sure these may be momentary; however, the fear and anxiety of these moments are very real. Creating moments of high stress, causing the heart to beat rapidly, pulse to rush and restricting your breathing …and all this coming from medicine that is supposed to “help” you.

15

survey done by the consulting firm IMS Health. Experts say most of those prescriptions are unnecessary. The U.S. makes up only 4.6% of the world's population, but consumes 80% of its opioids - and 99% of the world's hydrocodone.”

Jim Avila (@JimAvilaABC) and Michael Murray, April 20, 2011

The simple things like writing a letter to a friend become very challenging. You may find yourself sitting in front of the computer and trying to figure out what it is you’re supposed to do next. You may prepare yourself a meal to eat and forget it’s in the oven. Now most of you will say you’ve done this before, and I know this is true, but, I can bet it wasn’t on a daily basis. Then there’s going to bed and forgetting to lock the doors…or not, but getting up 7 or 8 times just to make sure. Allowing the paranoia to set in is too common for most of us on opiates. How many of you have cried out in pain as you try to go about your morning bathroom duties, pain brought on by the opiates destroying your kidneys. How many of you have spent hours vomiting your dinner because now the opiates have attacked your liver? These are just some of the things that happen to you when you are prescribed opiates long-term and no human being should be forced to experience Opiates were designed as a means to make the dying feel comfortable. Those of us who have been prescribed the “opiate cure all” know all too well what it’s like to die from the inside out.

I had been healthy all my life until 2 years ago when I got gallstones and had to undergo suggery. When I awoke, my body was literally on fire. For the following year, I was prescribed Dilaudid. When I told my doctor that the Dilauded made me feel sad, he prescribed me anti-depressants. Gradually over that year, the dosage for both was increased…and my health decreased. He finally diagnosed me with Fibromyalgia, a debilitating disease much like Multiple Sclerosis without the plaques.

I was told to immediately cease the opiates and was prescribed Gabapentin, Naproxen and then Lyrica. The pharmaceutical roller coaster began. Not only was I forced to go through five days of detox, encompassed in paranoia, I had new drugs to pump into my body. Within the first 6 months, I gained 92lbs, my body was no longer keeping me going, my hands began to swell, I could no longer paint and my kidneys were beginning to fail. I did not want to be on dialysis in my near future. I had never taken prescription drugs. I had always relied on natural alternatives. My body was not use to these chemicals and it was failing me. I knew I had to make a decision, and fast.

As an artist and nature lover, I depend on exploring, sketching and painting as things that make me happy. When I look back at the paintings I did while on the prescription drugs, I am saddened. They are dark, painful, distressed and filled with with creatures. The prescription drugs were turning my mind to mush, not to mention what they were doing to the rest of my body.

Many of us today have chosen a safer route to manage our illnesses - that choice is medicinal cannabis.

16

A highly controversial medicine that for me relieves the constant excruciating body pain that I experience from Fibromyalgia. My choice to use medicinal cannabis has given me back my life. I can function again. I can paint and sketch and garden. I can volunteer in the community. I can play with my grandson. I can run my home business. I am alive!

However, that also means I have a clearer view on things. It has painfully clear that the debate on medicinal cannabis is no longer about research….it’s about money!

Our governments don’t understand what they are doing to us with Big Pharma nor do they want to hear about it. They hand out medicinal cannabis exemption cards if you can find a doctor to prescribe it. However, the program does little to protect the patient in any way or form should you get raided. There are no subsidies or insurance to cover the costs of your cannabis prescription even though it is a prescription, regardless that most of us are on limited income…often below poverty.

Medicinal cannabis is an alternative to prescription drugs that works for many. It should not be denied to those in need of it. They force us to choose between our medicine, our food and our rent. However, the most difficult part is dealing with the daily stress brought on by all the drama surrounding the most natural medicine avalible to us, by a drug war that has failed terribly and left a trail of devastation.

What is the result ? U.N. agencies estimate the annual revenue generated by the illegal drug industry at $400 billion, or the equivalent of roughly eight per cent of total international trade. This industry has empowered organized criminals, corrupted governments at all levels, eroded internal security, stimulated violence, and distorted both economic markets and moral values.

These are the consequences not of drug use per se, but of decades of failed and futile drug war policies.

George Shultz, Paul Volcker et.al.

It is time for our governments to sit down like adults and review the existing research. Not that done by their corporate comrades in the pharmaceutical industry but by the independent researchers who have studied the benefits, in addition to the physical relationship between our bodies and cannabis cannabinoids. Turning a blind eye will NOT make it less credible. Denying people what is rightfully theirs has only created the very situation that the governments fear. Taking away our rights will not put an end to this War on Drugs, it will only continue to fund it.

I am a Chapter Leader in British Columbia and Chapter Communications Officer for Moms for Marijuana in Canada and abroad. Moms for Marijuana is an international grassroots network of parents and other citizens around the world, who focus on raising awareness, promoting education, and creating discussion in our local communities on the subject of the marijuana/hemp plant and its extensive array of benefits that could help heal the sick, rebuild the economy and re-establish a balance in our environment. It’s time to talk about it. www.momsformarijuana.org

17

A Quiet Mind A University of Sydney study of more than 350 long term meditators, defined as those who have meditated regularly for at least 2 years, points to improved health outcomes and greater wellbeing. The area of greatest difference between the meditators and the general population was in mental health where the meditators scored 10% higher. And the most significant factor appears to be how frequently the meditators achieved a state of mental silence.

“We found that the health and wellbeing profile of people who had meditated for at least 2 years was significantly higher in the majority of health and wellbeing categories when to compared to the Australian population,” said Dr Ramesh Manocha, Senior Lecturer in the discipline of Psychiatry, Sydney Medical School at the University of Sydney, who led the research.

The national study is a world first health quality-of-life survey of long-term meditators.

It used the same measurement instruments as the ones used by the federal government’s National Health and Wellbeing Survey.

“While we did expect that there would be differences between the meditators and the general population, we didn’t expect the findings to be so pronounced.”

“We focused on the definition of meditation as mental silence and surveyed practitioners of Sahaja Yoga meditation who practice a form of meditation aimed at achieving this state rather than relaxation or mindfulness methods that are usually the focus of other forms,” said Dr Manocha.

The mediatators were asked how often they experienced ‘mental silence’ for more than a few minutes at any one time.

He worked with Prof. Deborah Black, Sydney medical School and Dr Leigh Wilson, Faculty of Health Sciences at the University. \ “Most markedly there

Fifty two per cent of respondents said they experienced ‘mental silence’ several times per day or more, while thirty two per cent were experiencing it once or twice a day. “Our analysis showed very little was a robust relationship relation-ship between the frequency of experiencing mental silence between and better mental health. This definition is based on it how often being the form of meditation practised for centuries.” the person physically sat down to meditate and mental health scores. However, the relationship was clearly apparent in relation to how often they experienced the state of mental silence. In other words, it is quality over quantity”.

Reprinted from novamagazine.com.au June 2012 More details at http://www.hindawi.com/journals/ecam/2012/350674

18

Which is Kim Waugus lives in Wisconsin with SIX boxers and her husband, Erick, who works so they can afford dog food. Kim used to be an emergency vehicle dispatcher but is no longer able to work any longer. She is still active in the animal welfare world – her passion!

Summer Time, Fun Time? Not for me!

Many people from Wisconsin head south for the winter. Not me. I want to head north for the summer, to the snow covered mountains of Alaska. I’m a newbie to the world of fibromyalgia – diagnosed in October, 2011, but I have a trifecta of health issues – macular holes/retinal detachments in both eyes, fibromyalgia, & Type II Diabetes.

I was surprised to read most fibro people find summer & hot weather a relief from some of the symptoms. For me, it’s the worst. The heat is difficult to deal with most days; some days, it’s overwhelming. Throw in high humidity & I’m done. I perspire at the smallest movement & heat, humidity & constant perspiring depletes my energy faster than normal.

The heat makes me more irritable, which causes stress, which causes more pain.

Perspiring can be a side effect from pain medication. (Last summer I thought I was going crazy. Full-blown fibromyalgia without any medication – not pretty!) Ice packs & putting my feet in cool water provide temporary. I dream about sleeping in an igloo. I enjoy doing yoga because it relaxes me, but after a long session, my clothes are soaked with sweat.

Certain activities will trigger a sweating ‘episode.’ Any task requiring physical effort & mental focus, like grocery shopping, makes me look like I’ve run a marathon. Pain, especially severe headaches, has always caused me to perspire & now, I have both a lot.

Stress is another big trigger. I used to be a police/fire/EMS dispatcher & handled multiple tasks with ease – now, any more than one problem or crisis at a time results in the Niagara Falls effect. Add in a big change in weather & I’m a walking watering can.

What helps? Wearing loose, layered clothing made from breathable fabrics. No more long pants; I live in shorts & Capri pants, even during the winter. I gave ALL my heavy clothing to my sisters. I haven’t worn a winter jacket for two years, but have one just in case the temperature drops below zero. Bras are reserved for special occasions. (This has also reduced my shoulder, neck & back pain.) Mostly, I don’t wear socks & wear slip-on shoes whenever possible. I switched to a purse that I can carry, as straps always sit on a hot spot.

The sun is no longer a friend. My skin hurts just being exposed to sunlight. Thank goodness for wide brim hats. They shade my head, face, neck & part of my shoulders.

Lastly - diet. It is said we are what we eat. I can control my diabetes with diet, & eating fresh vegetables & fruits, yogurt, etc. is good for the diet & good for my internal thermostat. I love fried foods & still eat them occasionally, but I pay the price in heat & elevated blood sugar.

Fish in traditional Chinese Medicine is a cooling protein source & I love fish, so I broil fish often. Battered fish is delicious but can only be a once-a-month treat. I drink a lot of cool water - again, good for my diabetes & it helps keep me cooler.

I know I will survive this summer but, hopefully, without it being a daily struggle. It’s only 5 months until winter...I’m counting the days.

19

Worse?

Teresa Parmenter was born & raised in Fort Payne, in the northeast corner of Alabama.

For many years, Teresa worked in the local hosiery industry. After moving to New York in 2001, she worked in the fast food industry. However, once her health problems began to mount, Teresa was forced to take permanent medical leave in 2004.

Over the years, I have noticed that I struggle more during the colder months than I do in the warmer. The cold & damp winter temperatures are very brutal on my body. It doesn't just trigger an individual symptom. No matter how many layers I attempt to wear, it seems that some level of cold air manages to make its way through. Five minutes in the cold air can leave me immobile for days.

The headaches increase from 1 or 2 per week, to one that lasts for 4 days. Brushing my hair adds to the pain, & then makes my hair hurt. The acid reflux is more frequent, up to about 4 or 5 days per week. And to make matters even more uncomfortable, the Irritable Bowel Syndrome flare ups seem to never end. The cramping & bloating topped off with the lower back pain regularly goes hand in hand with everything else.

The sleep disturbances leave me extremely wiped out. I am always exhausted during the day.

The thought of moving beyond what is necessary is a bit more than I can muster. Cleaning, laundry & dishes are put off until I can find the energy to get them done.

Stiff, achy & swollen joints make it difficult to move without holding on to the walls for support. I develop knots around my shoulder, knee, ankle, & wrist joints that are extremely tender to the touch. In general, everything hurts! I become a hermit in the winter, not leaving my home unless it’s important. This helps to prevent the extra aches & pains.

The constant heat flashes make it a challenge to keep my body warm, especially the joints.

They also make it a challenge to sleep through the night. When I sleep downstairs, I am always in a comfortable pair of sweats, with a thick blanket, & a portable heater. I have managed to somewhat keep a warm cocoon that allows me to stay warm enough to prevent some of the aches. However, I tend to keep a fan blowing near my feet for when the heat flashes make their presence known.

I have watched the seasons come & go, paying closer attention to them & the triggers. I am truly convinced that the winter months are the most painful & devastating to my body. I am completely at the mercy of the colder temperatures. In the midst of this three to four month flare up, I have the chance to remember why it is so important to move & enjoy life when the warm weather rolls around again!

20

The Pain Inside of Me The pain that never, never dies It's not because I 'just don't try'.

Never give in Just want to begin again.

Nights go on, awake I stay Why does it have to be this way?

I try to just live my life, but its holding me down, this pain and strife.

Sometimes I just lay and cry But I don't give up, not gonna die.

It's something I can't control, Yet it's killing my soul.

Just a few pieces inside Wanna curl up and hide.

No-one can see it to really know it's there, Just really need someone to care.

Thinking I'm no good, just misunderstood.

Why's it have to be this way?

Don't want it to stay.

Gonna stand up and fight for what's supposed to be my life.

It's harder everyday, Not having things my own way.

To be happy and pain free I just wanna be me!!!

Gotta stay positive Only one life to live.

So I'll make it through one day at a time, holding my face to the warmth of the sunshine.

Gonna let go of the negativity And be who I'm supposed to be!!

Susan Hemingway 21

How is it possible that I can hurt from head to toe? Research shows the pain control system in the skin, spinal cord, and brain of fibromyalgia patients is overloaded and offers a reason for why you ache all over.

Nerve Fibres in Skin Your central nervous system (brain and spinal cord) is believed to be a major player in causing your fibromyalgia pain, but it’s not the only one. The skin appears to be contributing to your pain as well.

Seong-Ho Kim, M.D., and colleagues in South Korea, took tiny biopsies of this peripheral tissue from a group of fibromyalgia patients and compared the results to healthy controls.1 Most of the fibromyalgia patients, but none of the controls, showed enlarged or ballooned Schwann cells surrounding the nerve fibres.

Schwann cells are part of your immune system and encase all fibres extending from your spinal cord to your peripheral tissues, such as your skin. These nerve fibres relay information from your tissues to your spinal cord, and vice versa.

Under normal situations, Schwann cells provide nutritional support and protection for your nerves. But as they are part of your immune system, they respond to the nearby environment to make sure nothing occurs that might be threatening to your body. These cells are geared to respond quickly to anything that is not quite right.

Enlarged Schwann cells activated state usually infections and tissue activated, they pour out

represent an triggered by injury. When pain-promoting

substances, called cytokines, to clean up the debris from the tissue injury. Yet, obvious tissue injury is not apparent in fibromyalgia. However, cytokine levels in the skin of fibromyalgia patients have been shown to be elevated when examined under the high-power magnification of an electron microscope.2 These chemicals can cause painful skin irritation.

Spinal Cord Opioids When experiencing fibro pain, you would think the neurons in your spinal cord and brain would release lots of opioid-like painkilling substances to get your symptoms under control. Operating under this assumption, James Baraniuk, M.D., of Georgetown University, and Daniel Clauw, M.D., of the University of Michigan in Ann Arbor, measured the levels of enkephalins in the spinal fluid of fibromyalgia patients.

Enkephalins are naturally produced endorphins, similar to opioids. The results in the fibro group were compared to low back pain patients (regional pain) and healthy pain-free controls.3 The concentration of enkephalins in the fibromyalgia group was almost four times greater than the controls and three times higher than the regional low back pain patients. This means your spinal cord is pouring out natural opioid-like substances in a valid attempt to contain your pain, but it is just not enough.

Opioid Receptors in Brain Given the high concentrations of spinal opioids, shouldn’t the pain disappear?

Clauw’s team measured the number of receptor sites in the brain that opioid-like substances target to put out the pain. He compared a group of fibromyalgia patients to a group of healthy controls using a brain imaging technique called positron emission tomography (PET).4 The opioid receptors

in the brain were almost completely occupied in the fibromyalgia patients, particularly in the areas known to regulate pain.

So Why Do I Hurt?

If you are producing plenty of opioid-like enkephalins and they are activating the pain-relieving receptors in your brain, why do you still hurt all over?

Researchers don’t know all the details, but the foregoing findings offer important clues.

Studies in the skin implicate it as a potential source of continuous pain transmissions traveling to your spinal cord and the cytokines produced by the enlarged Schwann cells cause local irritation. Substantial elevations of the opioid-like enkephalins in your spinal fluid could be doing more than hitting the centres in your brain to provide analgesia.

They might also be activating your immune cells to produce pain-promoting cytokines.

A recent study looking at cytokine levels in the spinal fluid of fibromyalgia patients supports this theory. One pain-producing cytokine was found to be increased fourfold.5 Your body is working overtime to put out your pain, and there is no question you hurt from head to toe, including your skin.

However, too many pain-promoting cytokines appear to be produced by the opioid-related process. This means your body’s attempts to ease discomfort backfires, leading to more rather than less pain.

1. Kim SH, et al. Clin Rheumatol 27:407-11, 2008.

2. Salemi S, et al. J Rheumatol 30:146-50, 2003.

3. Baraniuk JN, et al. BMC Musculoskel Dis 5:48-54, 2004.

4. Harris RE, et al. J Neurosci 27:1000-6, 2007.

5. Kadetoff D, et al. [epub ahead of print] Nov. 27, 2011.

22

Karen Carrington is a sales representative, who retains her job by working from home (which permits short nap periods). She is a major advocate for exercising for pain management. After starting with short walks with the dog, and even with 2 children and an understanding husband, Karen manages to go to the gym 3 times a week and is able to take part in a sport she loves – off-road motorbike riding.

I was first diagnosed with fibromyalgia in 2004. I had actually diagnosed myself about two years earlier but I couldn’t get any GP to accept it. Too often, I was told that there was no such thing as Fibromyalgia, or that there was nothing wrong with me!

I remember seeing a pain management consultant who asked me about pain management.

I told him that was taking up to 10 paracetamol a day, but that they did not even make a dent on the pain so I had stopped taking them. After a further 15 minutes, at the end of the appointment, this very clever man advised me that I should take paracetamol to ease the pain!

It was then that I decided that I would sort things out myself - I was NOT going to let the pain ruin my life! I had no idea how I was going to fix it; I was just determined that I would do so.

Like most sufferers, the thought of exercise was intolerable. Anything physical would mean 3-4 days of recovery and excruciating pain.

Then we got a dog…

A dog needs to be walked and nobody else in my family could be bothered. I despised them for it at the time, but now, I realise that if things hadn’t gone this way I would never be how I am today.

Initially I started walking him around the block every few days - I would need the time in between to recover. Then I noticed that my recovery time was lessening, so I started walking him on alternate days: it wasn’t always easy. Most days, it was a case of concentrating on putting one foot in front of the other and willing the whole thing to be over.

I began to realise that if I missed a walk, it would take longer to recover for the next time.

So I started walking him every day. I was still in huge amounts of pain but it was not as bad as when I used to do little or no exercise; and there was definitely a noticeable difference if I did not do it every day.

23

Over the next 6 months, our walks increased to about 20 minutes a day. It wasn’t all plain sailing: I had set backs and days where I thought of giving up. But those are the days that you have to be determined to carry on – the worse you feel and the more pain you are in, the more important it is not to miss the exercise.

It took me about 4 years to get to the point where I could say that my pain levels had become manageable and those 4 years were seriously hard work. But by this point I was walking my dog for an hour every day, across rough ground and fields and at a decent pace.

But I still wasn’t able to live the life I wanted: I was unable to ride my motorcycle as I would not be able to sustain the necessary effort. I had gotten my license in 2005, but had only ridden 4 times Then, in 2009, my husband talked me into participating in a charity event that would involve off-road riding, on a motorbike, through very difficult terrain, for 12 hours a day over 8 days in South Africa.

Impossible, right? I didn’t think that I would be able to complete the event, but I was going to give it a try. I had until October 2010 to get into peak condition (a little more than 14 months away).

I started going to gym 3 times a week - it was terrible, at first, and I didn’t think my body (or my mind) would cope. But slowly it got a little easier. I still continued walking the dog every day and over that 14 month period can count on one hand the number of walks I missed.

October 2010 arrived and I completed the entire 2000km off-road trip and loved every second of it. I AM in charge of this illness. I continued going to the gym 3 times a week, walking the dog and I ride motorbikes both on and off road as often as I can.

I still have pain, but it is now manageable. I don’t take any pain medication. Although I am still exhausted all the time and many other symptoms have not disappeared; I always found the pain difficult to live with whereas, now, it is nowhere near as bad.

Exercise is the key to managing your pain, but it requires determination, dedication and patience. Start slow and build up your levels and most important of all – DO IT DAILY, even (and especially) if you feel terrible. You will have times where you go backwards, especially in the beginning, but persevere and you will feel so much better in the long run.

You will be able to do things you never ever dreamt you could!

Support the fight for awareness Visit www.freewebstore.org/fibromodem

Bring out your inner

Once your body starts to get used to exercise it is amazing how much more quickly it can cope and recover.

24

Post for My Niece My niece was telling her friend about a bout of FOG that she had recently experienced; only she has lupus & RA, not fibro.

She was too exhausted to complete her post & had asked another friend to define our FOG in the comments.

I decided to write my own definition to send to her:

Linda B. Mason

Dearest Vicky,

First: You are loved. And some of us DO understand because we have lived with the pain, the frustration and the FOG for years. Unless you've lived it, there is NO possible way that one can understand it.

Fibro fog/Lupus fog: The state of almost being. Physically present usually accompanied by physical pain. Mentally present but not fully "here nor there" state. Groggy. Somewhat unable to communicate effectively and usually accompanied by words from "out of the blue." Also includes words that are well known that just completely "disappear" while trying to be spoken.

Slow, both mentally and physically. Turtle crawl. Hangover without having taken "anything" or without having been drinking anything alcoholic. Similar to aftermath of a severe migraine.

Occasionally brought on by stormy weather, especially accompanied by low barometric pressure and/or HOT & HUMID Southern weather i.e. sweating like a whore on the first pew in church on Sunday morning after a wild Saturday night; by over exertion of any type (cooking a meal, cleaning house, shopping for groceries, travelling, playing with grandchildren [or children for younger patients], going to church, going to doctor appointments, going anywhere except to bed.) Noise also brings on bouts of this terrible "fog." Having to deal with pain associated with fibro/RA/lupus and other immune disorders and/or invisible diseases causing the "fog" along with frustrations over having to actually deal with all of these AND knowing that there is no known cure, little understanding and much speculations.

"Fog" patients don't want sympathy...they want to feel better, they want understanding, but most of all--they simply want their lives back. Sometimes, a gentle {{{hug}}} helps.

Love you, Vicki.

Aunt Linda

25

Research News

Strong Association Abuse and Chronic Fibromyalgia

between Fatigue,

Childhood physical abuse appears to be linked to significantly elevated rates of functional somatic syndromes such as chronic fatigue syndrome, fibromyalgia and multiple chemical sensitivities, say University of Toronto researchers. Their findings have been published in the Journal of Aggression, Maltreatment & Trauma.

The study examined a subsample of the 2005 Canadian Community Health Survey involving 7,342 women, 10 per cent of who reported being physically abused as children.

Lead investigator, Professor Esme FullerThomson, said that women who reported they had been physically abused as children have twice the odds of chronic fatigue syndrome and multiple chemical sensitivities, and 65 per cent higher odds of fibromyalgia. "These findings persisted even after controlling for potentially confounding factors such as other adverse childhood experiences, age, race, mental health and adult socioeconomic status," she added.

"But perhaps the most interesting aspects of the research," noted co-researcher Joanne Sulman; "are the questions it raises, such as the mechanisms that link physical abuse to chronic fatigue syndrome, fibromyalgia and multiple chemical sensitivities."

Does your car support Fibromyalgia Awareness?

Bumper stickers available at www.freewebstore.org/fibromodem

Deeper Brain Region Pain Relief

Early results of a pilot study on 5 FM patients means that a larger, controlled study, involving about 40 FM patients will be the next step, said Dr M. Bret Schneider at the annual meeting of the American Psychiatric Association.

An investigational, four-coil device for transcranial magnetic stimulation (rTMS) deep in the brain produced some striking cases of sustained pain relief when tested.

The new device for rTMS builds on the premise of a TMS device marketed by NeuroStar and approved by the Food and Drug Administration for treating depression. Instead of the single coil used in the NeuroStar device to create a pulsating magnetic field and produce an electrical current within a patient’s prefrontal cortex, Dr. Schneider and his associates designed a four-coil device to target a deeper brain region, much like a Gamma Knife used for radiosurgery. Their target was the dorsal anterior cingulate, a region of the brain linked with chronic pain. The concept was to stimulate the cingulate to produce a non-invasive cingulotomy, a surgical procedure

26

occasionally performed to sever whitematter connections to the cingulate and provide pain relief to patients with intractable, chronic pain.

Dr Schneider cofounded a company (Cervel Neurotech) to develop this device.

Firstly, to test several different four-coil arrays on healthy volunteers to identify the orientation that appeared to produce the greatest effect within the dorsal anterior cingulate, based on the treatment’s impact on cingulate metabolism measured with oxygen-15 PET scanning. The developers then applied the most promising orientation using two different treatment modes in a study that included a total of 45 FM patients with chronic, intractable pain. Some patients in the study received treatments with a different coil orientation, or placebo treatments.

The results showed that the best outcomes occurred in the five patients who received the highest frequency of magnetic pulses, 10 Hz in the bestperforming coil orientation. The treatment was performed 5 days a week for 4 weeks. Pain levels steadily dropped over the course of the 4-week treatment, and their pain fell even further when measured after their treatment finished. Their lowest pain level occurred at the 4-week followup, when they showed an overall average 45% drop in their pain scores, compared with baseline.

The most common, treatment-associated adverse effects were mild episodes of headache, nausea, and scalp pain, said Dr Schneider.

FM AND an overactive bladder A study in South Korea has revealed an association between overactive bladder (OAB) and FM in adults aged 40 and over.

The survey was conducted in the Guri and Yangpyeong areas of South Korea.

Overactive bladder, also known as urge incontinence, irritable bladder, etc., is a function of bladder muscles contracting ‘at the wrong times’, possibly owing to dysfunctional nerve signal-muscle coordination.

After excluding subjects with incomplete questionnaires, 920 subjects were included in the final analysis.

Individuals with FM had significantly increased symptoms of OAB. The association between FM and the severity of OAB was statistically significant.

Moreover, FM increases the severity of overactive bladder.

FIBRO TIP ALWAYS ask about concession prices or hardship policies when going to a doctor or entering a new course of treatment

Make sure that you receive the next issue of

LIVING WELL WITH FIBROMYALGIA with fabulous Christmas and Valentines’ Day Wish Lists (which you can print & leave out for your loved ones to find!)

27

Happiness just happens when we live each day with a light heart, says relationships counsellor Dr Charmaine Saunders When things are easy, we take them for granted but is that necessarily a bad thing? The greatest gift sometimes is to be able to take the things we love for granted. Not to the extent where it can lead to contempt or abuse but so that we can be comfortable with our gifts and not doubt them. Above all, we should nurture our closest relationships and other precious life treasures, trusting that they are indeed ours and with a sensitive amount of care, can always be.

The type of 'taking for granted' that can be positive is where there is lack of struggle, insecurity and uncertainty. As long as we hold on too tightly to what we have, choosing fear over serenity, we can never really know peace and true prosperity.

It's okay to be a little 'hungry' in life because if we had everything we wanted all the time, there'd be nothing to strive for and no sense of achievement when we do succeed.

So, as with everything in life, balance is the key. Let us embrace our triumphs with enough humility to learn from both successes and so-called failures. Life is full of both. No one can ever exist without some strife, disappointment and conflict but these can only cripple us if we allow them to define us. We are more than our achievements or mistakes.

If we have set expectations and require perfect outcomes, we will never be free we will be the victims of our own self-

image, slaves to ambition, vanity, ego and greed.

A good rule of thumb is to live without obsession and with moderation, boring as that notion often is. Anything we want too much, seek too much and give too much energy to, will turn around and bite us, sooner or later.

Live light Are you happy? This question is likely to bring either a defensive response like "Of course I am!" or a bemused reply of, "No, should I be?"

Happiness is such a simple, natural concept and yet it seems so hard for the average person to attain. Most of us are really bad at being happy!

Why on earth should this be so? Firstly, let's explode some myths and then we can look at some strategies for allowing happiness into our lives.

Myths about happiness:  

Happiness is somewhere 'out there' and we have to find it It's associated with goals, places, people, events

28

    

I can get happiness and (make) others happy too Happiness is basically unattainable and certainly fleeting It has to be earned.

It's elusive and in the future somewhere You need a reason to be happy.

Sounds familiar?

Happiness lives within us, never outside of us. Therefore, it cannot come from external sources. The joy we get from things outside is the cream on the cake, an extra bonus but it can never be the whole story.

Relying on people, places and events to make us happy is the ultimate fantasy. It can only bring transitory pleasure & disappointment in the end.

There is no need to try to get happiness because it is your natural birth right. It exists deep within you like a constant wellspring - infinite, always available, powerful. Imagine knowing that you can be happy at any time and forever, without having to do anything to earn it or make it happen.

As happiness is linked to the life source energy, like sexuality, creativity, spirituality and joy, it rests in the individual and therefore, cannot be bestowed by one person on another. This is one of our greatest myths - that we can make each other happy. At best, it is a romantic illusion created by songs, literature and popular culture. At worst, it causes a great deal of society's heartache as this mistaken idea is taken into marriage and other relationships where it can only be

29

ground into dust by the heavy foot of disillusionment. The saddest part is that we don't need to suffer if only we are prepared to accept responsibility for our own happiness. It works both ways. If no one has to make you happy, neither do you have to do it for others. Think how liberating that is! It isn't selfish or uncaring because as you feel your own happiness, you'll have more to share with others, anyway.

Happiness is a choice. All you have to do is open yourself up to it and it'll be there continuously for you.

The type of happiness that is possible on a permanent level is the interior peace that means you feel good inside your own skin, that you have a positive relationship with yourself and you're enjoying the journey we call life. It means you can relax, be yourself, not have to try so hard to please and impress.

Most people feel happiness is a goal to be reached somewhere in the future. It's what I call 'deferred happiness'. You know the kind of thing - "I'll rest on the weekend", "I'll travel when I retire", "I haven't got time to play sport", "I'm too busy" - and so on.

Each day is a unique experience and cannot be retrieved if you waste it.

Wasting time having fun is fabulous, wasting time in regret, guilt and anxiety is expended energy you could better utilise elsewhere.

Have you noticed that if you just feel happy for its own sake, people think you're strange? They say things like, "What do you have to be happy about?" or "What's brought on this cheerful mood?"

  

Connect with your inner child every day Play every day, not just on weekends and holidays Love yourself enough to allow happiness in your life Source: Reprinted from http://www.novamagazine.com.au/art icle_archive/2012/2012-03-happinessprinciple.html

Dr Charmaine Saunders has been working in the personal development field for 20 years after a teaching career in English and Literature. Charmaine holds the following degrees: Associateship in Speech and Drama, WA, 1968 Bachelor of Arts (literature & psychology), WA, 1976 Diploma of Education, VIC, 1979 PhD (social psychology), US, 1983

Did you know...

The whole point of being happy on a continuous basis is that there is no particular reason - you feel the joy inside you and you naturally smile and shine, like walking near the ocean on a glorious summer's day and being grateful just to be alive. You can have that bliss all the time, in the sun, in the rain, on good days and difficult, when life is going your way and when it appears everything is against you.

It's feeling "okay" inside all the time. That is true freedom. And as you shine, those around you bask in the warmth of your joy.

How do we positively work with the happiness principle?    

Look for signs everywhere Make positive thinking a choice Relax and stop worrying Remember life is a daily adventure

Swearing Can Reduce Pain!

Swearing when you hurt yourself can lessen the pain you experience – or so say the findings of researchers who asked people to place their hands in buckets of icy water. The first time, they were told to repeat a swear word over and over, the second time repeating an everyday word instead. When swearing, they were able to withstand the cold water for longer, and reported less pain than when repeating the neutral word. The researchers believe that cursing may ramp up the ‘fright & flight’ response, helping people forget about their pain.

So swearing may not just help express frustration, it could also lessen the impact of pain

30

An Introduction to the Difference between Fibromyalgia & Chronic Myofascial Pain

by Dorothy Gerecke Edited by Dr Devin Starlanyl

Fibromyalgia (FM) is a category of illnesses made up of subsets, which was previously believed by some to be either psychological or rheumatologic in origin.

Recent research has shown that FM is actually associated with dysfunctions of the central nervous system, & characterized by chronic widespread pain. FM can amplify other sensations, especially pain, such as that caused by chronic myofascial pain (CMP) or osteoarthritis (OA).

CMP may or may not be wide spread pain that is generated by hyperactive focal areas of irritability in muscle or its associated fascia that are known as myofascial trigger points (MTPs).

(Fascia is the network of connective tissue that covers & intertwines with muscle) CMP can occur in one muscle & does not have to be widespread.

NOTE: Tender Points occur in FM & only hurt when pressed. Trigger Points occur in CMP & radiate pain to other areas, often quite a distance away.

Stage 1 CMP is simply myofascial trigger points that have become chronic. This could be due to lack of proper care, or lack of control of perpetuating factors.

Once central sensitization has occurred, it becomes Stage 2 CMP. This can still be localized, but if the perpetuating factors are such, it can, through development of satellite MTPs, continue to develop in all 4 quadrants of the body; stay on one side; just the top of the body; right or left; or in three quadrants. When the doctor firsts talks to a patient, she/he

might tell the patient about one set of MTPS, but after taking a history & examining the patient, the doctor may find unsuspected latent MTPs all over.

The treatment for CMP is mainly aimed at eliminating MTPs. There are many options for this, including trigger-point myotherapy by bodyworkers who have had extensive & specific training in this area.

This treatment is usually ‘on-going.’

Patients learn to treat some of their trigger point pressure release (TrPs) themselves. Other options are TrP acupuncture, reflexology, meditation, T'ai chi, controlled exercise & so on.

FM & CMP very often occur together, but are completely separate illnesses. Most people mistakenly think FM & CMP are the same, under the label of FM. The treatment of one is entirely different to the other.

Neither condition is well known. They are very rarely mentioned in the media despite affecting 2-3% of the population (NB: the percentages may differ as most physicians are not trained in myofascial medicine). Both affect mostly women & can appear at any age. It is very painful, amongst other things.

They are real conditions.

FM & CMP are very misunderstood – with no known cause or cure for FM. The pain of FM & CMP can itself consume one's life, leading to depression & stress, which in turn

31

causes further pain & stress, hence becoming FM & CMP. FM is characterized by general aches and pains that are body-wide, sleep disturbances, & non-restorative sleep, restless legs & more. Another common problem includes loss of cognitive function - loss of concentration, short term memory loss, patients forget what they were saying mid-sentence, cannot think of a specific word, and cannot multi-task.

It also affects one's perception of judgment of distance, space & depth, some days worse than others. Patients also have ‘sensory’ overload, eg: being at a party where one's brain is overloaded with too much input for the brain to interpret.

FM is not life threatening or degenerative, even though it may seem so by the patient. Both conditions can result in disability, but if treated adequately, both FM & CMP can both be controlled.

FM can be controlled quite well with appropriate medications for pain, sleep & depression, teamed with a balanced diet, gentle regular exercise e.g. swimming, walking; & learning to pace activities & taking breaks when needed. Patients need to identify as many perpetuating factors as possible & deal with them or avoid them as best they can. Pain & stress are key perpetuating factors.

Exhaustion may follow physical activity, eg: a trip to the mall for a couple of hours can cause fatigue, which overlaps into the next day.

FM is not the same as chronic fatigue syndrome (CFS). ‘Chronic fatigue’ means being tired all the time, but this can be due to having to tend a new baby, etc., it is different from what some call Chronic Fatigue Immune

Deficiency Syndrome (CFIDS) and others call Chronic Fatigue Syndrome (CFS). Many people with FM &/or CMP have chronic fatigue because they have non-restorative sleep or MTPs that cause so much energy dysfunction, but they don't have CFIDS. It is important to make that distinction. Some patients can have all three illnesses.

By the time FM & CMP patients finally reach a physician who is aware of these conditions, they are often relieved when they are diagnosed & learn about treatment options for both, & that their pain is not ‘in their heads’ after all!

Patients have bad days and good days, which makes it difficult to plan ahead.

Flare-ups are common, & can be caused by almost anything. A Flare is when all symptoms seem to ‘blow-up’ at the same time, causing the patient to feel ‘on death's door.’ One may have to cancel social engagements at the last minute, eventually people stop inviting you altogether and it is difficult to keep appointments, also these illness are the cause of many break-ups in relationships, and loss of jobs as the patients have too many ‘sick days.’ Often a patient's family does not understand, hence much needed support is lacking.

Friends often don't understand, thus the patient loses friends, when she/he needs them most.

There are many more problems a patient has to deal with, far too many to mention here. People who have these conditions don't say much about it for fear of being ridiculed as they are an ‘invisible’ illness.

Further, if you mention that you have these illnesses; people are often not interested in taking the time to learn what they need to know about them to help you or to help understand you.

32

Is Pain Really All in the Mind and What Can We Do to Relieve it?

Millions of people live with the very real and chronic pain of fibromyalgia, destroying their ability to live a normal life thereby causing stress, anxiety and depression. There are many theories as to why we feel so much pain. It is my belief that it is caused by oversensitisation of the nervous system, which amplifies and distorts pain. That doesn’t mean that fibromyalgia is an imagined illness and therefore all in the mind – it is very real.

In order to overcome my symptoms completely I recognised that I needed to understand pain before I could deal with it.

Your mind is an amazing and incredibly powerful machine. Every second it receives millions of pieces of information via your five senses:

33

Rebecca Richmond was the ULTIMATE super mum, super wife and super executive all at the same time. When Fibromyalgia forced her to wake up to the fact that she was only human, she ‘escaped to the country’ for the benefit of her health and family. She eventually found a combination of self-help techniques which enabled her to recover and develop her second and incredibly rewarding career as a qualified coach, master practitioner of NLP, hypnosis and Time Line Therapy™.

Rebecca has triumphed over Fibromyalgia, cancer and other devastating events, and her clients benefit greatly from her extensive knowledge of behaviour, the mind and from her own journey. She is an intuitive and motivational stress management coach who has a passion for helping people recover from Fibromyalgia through alternative therapies.



sight



sound



touch and movement



taste

Now through her book “Forget Fibromyalgia” and her “Forget Fibromyalgia Accelerated Recovery Programme” she is helping others just like you to manage their symptoms.



smell

http://www.forgetfibromyalgia.com

If it processed all of this data so that you were aware of it consciously, it would be too much for you to cope with, so it filters it down to about 140 pieces of information.

I recognised that my brain was focusing on the pain and symptoms, deleting all the other detail.

The good news is that because of the type of pain we are suffering from it is possible for us to tune out from it. There are three types of pain: 1. Short-term or acute pain. Many acute pains are like an alarm telling us something

is wrong and they serve a very useful purpose, like if you were to put your hand on something very hot.

2. Long-term pain is described as persistent or chronic pain; fibromyalgia comes under

this category. As Fibromyalgia does not damage the joints, muscles or other tissues, the messages are not needed – they are just annoying and distressing.

3. Pain that comes and goes is called recurrent or intermittent pain – fibromyalgia in

some cases.

Pain travels from the peripheral nerves – in your skin, muscles, bones, joints and internal organs – in the form of electrical pulses to your spinal cord. Chemicals called neurotransmitters are then released which activate other nerve cells in the spinal cord, to process the information and transmit it up to the brain. Just like a powerful computer sometimes this system can go wrong. The messages become confused and the brain fails to understand the signals properly. Sometimes pain can begin very small, but as the signals move along the network it becomes louder and stronger. It’s a bit like tuning in to a radio station.

Pain is never just in the body or just in the mind – it is a complex amalgamation involving our whole being. Part of this process is directly linked with the emotional centres of the brain. So if we feel angry, depressed or anxious our pain will be worse. Put simply, how we are feeling has an effect on our overall level of pain. That is why by having a good laugh or exercising, we can strengthen our ‘good’ neurotransmitters and reduce our pain.

I focused on interrupting and tuning out from the pain signal, strengthening the good neurotransmitters until eventually the pain was gone completely. This involved a number of techniques but a very simple way to begin is to look for pleasant ways to distract yourself. It may be challenging at first, but even a few minutes of relief is worth the effort.

34

Wish

Fibromyalgia Awareness Rubber Duckies (2) available on EBay for $2.42

12

3 4 5

Easyfeet Foot Scrubber Brush Massager available on EBay for $5.50

Fibro Fighter Zip Hoodie (with double sided printing) available at www.cafepress.com/fibromodem for $53.00

MK111 NMES/TENS Machine - $349.95 Leads (2) - $22.00 15 Pack Bulk 5cm x 5cm Electrodes - $150.00 available at www.tens.com.au

35

THE Ultimate on the Fibromyalgia Wish List (other than No More Fibro) A Live-In House-keeper (costs vary)