Social Media & High Tea

Low Dose Naltrexone

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Recent Studies

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Relation-ship Impact

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Before Bed

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Spectrum Disorder

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List of Coffee Meets

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Benefits of SNRIs

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Self-Efficacy

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Emotional Trauma as a Cause?

Network News

Institutions all over the world have recently run, or are currently running studies that look into various aspects of Fibromyalgia. Studies into the efficacy of medications, the functioning of cells and systems in the body, Fibromyalgia symptoms and their triggers, and other new treatments, are on-going. Some new studies have shown actual measurable differences in certain chemicals and cells in the human system. The most notable is one conducted by the University of Illinois, Chicago, the results of which suggest that Fibromyalgia may be an immune system disorder, like Lupus, Rheumatoid Arthritis, MS and Type 1 Diabetes. The study measured cytokine levels and may lead to an actual test for Fibromyalgia. This is a huge breakthrough. (see p4) A study at Linköping University in Sweden has measured the substances in the muscles that supply energy to the cells and found that Fibromyalgia patients have significantly less in their systems. This could lead to another possible test, or at least be an indicator of Fibromyalgia. (see p4) German scientists suggest that Fibromyalgia is a ‘spectrum disorder’ rather than a specific illness. (see p7)

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There are new medications in the works too. We are still waiting to hear what is going on with milnacipran and its Australian approval. There is a new dopamine agonist patch called Rotigotine which is being studied in the U.S. Another study into low dose naltrexone, conducted at Stanford

University has shown further evidence of LDN’s benefits for Fibromyalgia patients. (see p3) As well as good news, some studies show not-so-good news. Like one from the U.S. National Data Bank for Rheumatic Diseases that shows that in a great number of cases the side effects from medications used to treat Fibromyalgia outweigh the benefits. (see p6) In other news, the term ‘Fibromyalgia’ may go by the wayside. Some scientists now consider Fibromyalgia to be a part of Central Sensitivity Syndrome. We will have to wait and see if that one catches on. Meanwhile, in Portugal, scientists at the University of Lisbon claim that psychologically traumatic life events are not a contributor towards a patient getting Fibromyalgia. (see p8) Study related to Fibromyalgia is being carried out in the USA, Portugal, France, Israel, the UK, Australia, Spain, Germany, Canada, Sweden, Egypt, and many other countries. It goes to show how important the study of Fibromyalgia is. That there are estimated to be something like 700 000 Fibromyalgia sufferers in Australia alone (based on 3% of population) gives great weight to expending as much time and money as is possible learning all there is to know about the condition.

A lot is being done and we all have every reason to hope for breakthroughs in the not-toodistant future.

Would you like to help with our running costs? We can now accept tax-deductible donations via PayPal as well as the usual ways! Click on the graphic for information.

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We have included many ‘hyperlinks’ in this newsletter. Your cursor will change when you point at highlighted and/or underlined text and some graphics. If you click, you will be taken to websites and documents with more information on that subject.

You will also notice a new icon. publication for the article.

Clicking in this will take you to the original source

ON LINE & SOCIAL MEDIA Our Facebook group is proving to be one of the most popular on Facebook. We have new members asking to join almost every day. The Group is “closed”. You have to ask to join and only people that are in the group can see what is written there. This gives members much more freedom to discuss issues related to their condition, without any of the posts appearing on their own ’timeline’ for all the world to see. Comments from members say that they like that all of the posts are about things to do with Fibromyalgia. Most of the group’s over 350 members are also members of the Support Network. The volume of knowledge and experience within the group is huge. They are a very welcoming and friendly bunch too. It’s a great place to ask and answer questions, give and get support, and even have the occasional vent. Come and have a look. Click on the link below left. We also have a Facebook page that you can ‘Like’. You will then receive reminders and updates for events and coffee meets. If you use Twitter, you can follow us for the same reminders and information. If you have any ideas on things that we can do to improve our website, Facebook group or page, or any other aspect of the Network, please can let us know by email or Facebook.

INTERNATIONAL FIBROMYALGIA AWARENESS DAY

There will be some fantastic raffle and door prizes. Tickets are sure to sell quickly. If you haven’t already, click on the ticket to go to our web page where you can get yours...

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DID YOU KNOW??

* If you go without sleep for 11 straight days, you will die. Yes, die. * In addition to being grey, your brain is also white, black and red. * Canned white tuna (albacore) has three times more mercury than chunk light tuna (skipjack). * In people under the age of 75, the radius bone in the wrist is the most commonly broken bone. In those over age 75, hip fractures are most common.

* Greek yogurt has twice as much protein as regular yogurt, but less calcium. * Drinking green or black tea with your dinner can decrease iron absorption from your meal by up to 50 percent.

* Middle-aged and older people can boost weight loss efforts by drinking two cups of water before each meal.

* Cucumbers and celery contain at least 95 percent water. * Those baby carrots that come in those handy bags are often washed in a solution comprised of chlorine and water.

* Quinoa is technically not a grain. It is a seed of a plant in the spinach family.

* You cannot tickle yourself.

Anne Reid Room at the Melville Library , behind Garden City Shopping Centre. Thursday 4 April at 1pm Cost: $4 — Includes Tea/Coffee

APRIL MONTHLY MEETING Beverly Nota, a registered Bowen Therapist, will be speaking about the benefits of introducing Bowen Therapy as part of a health care regimen designed to be part of general maintenance for Fibromyalgia sufferers. Beverly will explain just how Bowen Therapy can assist people with pain. She will also be giving a demonstration on a member to show first hand what this amazing modality can accomplish in a short space of time.

Please check the Calendar (here) for details. Here’s a map :

LDN FOR FIBROMYALGIA

Naltrexone, in normal doses (50-100mg), is a medication used to help people who are coming off opioids. It blocks the ‘high’ associated with their use. In very low doses it is called ‘LDN’ (low dose naltrexone). LDN is prescribed at much lower doses, typically less than 5mg. It is said to be beneficial in people with Fibromyalgia. Studies have shown that patients experience a 28% reduction in pain, have an improved satisfaction with their quality of life, have improved mood, whilst having NO serious side effects. It does not seem to help with fatigue or sleep. LDN has also been found to help with autoimmune and inflammatory illnesses, including MS, Crohn’s, and other immune-related illnesses like HIV/AIDS. LDN is widely used in Europe, but not in Australia. To get it, you will first have to convince your GP to prescribe it, and then ask where your nearest Compounding Pharmacist is to get the very low dose specially made up for you. A new pilot study at Stanford University (USA) further confirms the benefits of LDN. They are now gearing up for a more extensive study. Pain Medicine (2009) Jarred W. Younger and Sean C. Mackey FS N WA

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‘Researchers Against Chronic Opioid Use’ From Pro Health There is concern over the dramatic increase in chronic opioid therapy in the last decade, particularly amongst Fibromyalgia patients. Researchers from the University of Arkansas for Medical Sciences are concerned that doctors are over -prescribing opioids (Codeine, Morphine, Oxycodone, Fentanyl and the like) for Fibromyalgia patients. They observe that there are often more negative effects than benefits from taking these medications, especially when compared to the FDA approved medications for Fibromyalgia. (In our recent survey over 45% of respondents said they took prescription pain medications) Painter J., Crofford L., Journal of Clinical Rheumatology, January 29 2013

NEW STUDIES COULD LEAD TO

TESTS FOR FIBROMYALGIA

‘Unique immunologic patterns in Fibromyalgia’ From BMC Clinical Pathology A 2012 study by the Pathology Department at the University of Illinois found that cytokine levels in Fibromyalgia patients were much lower than normal. Cytokines are small protein molecules that are secreted by many cells, and are used by those cells to communicate with each other. There is some discussion amongst biologists whether or not they are types of hormones. The amounts of some cytokines are greatly increased by trauma and infection. They are an important part in the defence against pathogens, autoimmune diseases, some acquired allergies, and other immune reactions (ref). The study implies that in Fibromyalgia patients the lower amounts of cytokines leads to a compromised immune system. The ability to measure the amounts of the many different cytokines may lead to future tests for the efficacy of Fibromyalgia medications, and to an actual test for Fibromyalgia itself. BMC Clinical Pathology 2012, 12:25 doi:10.1186/1472-6890-12-25

‘Lower Levels of ATP and PCr Found in Muscles of Fibromyalgia Patients’ From European Journal of Pain ATP (adenosine triphosphate) has been described as ‘the energy current of life’. Mitochondria are the energy producers in each cell and they supply this energy in the form of ATP. PCr (phosphocreatinine) is an organic compound found in muscle tissue that stores and provides energy for muscular contraction. The study, run by researchers at Linköping University in Sweden, showed that Fibromyalgia patients have approximately 30% lower PCr and ATP levels compared to non-FM patients. Muscle fat, specifically in the quadriceps, was 1/3 higher. There was no significant difference in body mass index. They conclude that alterations in intramuscular ATP, PCr and fat content in FMS probably reflect a combination of inactivity related to pain and dysfunction of muscle mitochondria. ATP is considered to be the most important “energy molecule” in the body. Without it, our cellular processes would cease to function. In this role, ATP creates chemical energy within cells for all of metabolism. It is vital to our body’s function and when ATP is low we feel tired, have poor muscle function, feel depressed and just don’t function properly. There is only about 250g of ATP in the human body, and it gets recycled throughout the day. So if we have 1/3 less than we are supposed to, that would go a long way towards explaining our sore and tired muscles and lack of energy. Eur J Pain. 2013 Jan 30. doi: 10.1002/j.1532-2149.2013.00284.x FS N WA

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FIBROMYALGIA MPACT ON RELATIONSHIPS ERIC Y’SU I AND CHINESE MEDICINE

‘Fibromyalgia Family and Relationship Impact Exploratory Survey’ From PubMed.gov A University of Pittsburgh study published in November 2012 has shown that in addition to physical impairments that are well documented among individuals with Fibromyalgia, there is a substantial negative impact on important relationships with family and close friends. A survey with 40 questions was available on-line for two months. It included questions about demographics, Fibromyalgia symptoms, mood disturbance and relationship impact, including the Relationship Assessment Scale. The survey was completed by 6,126 adult Fibromyalgia sufferers. Half of the respondents indicated that Fibromyalgia had damaged their relationship with their spouse/partner, or contributed to a break-up. Half of the respondents scored as not being satisfied with their current spouse/partner relationship, with satisfaction negatively affected by the presence of mood disturbance (depression etc) symptoms and more severe Fibromyalgia symptoms. Relationships with children and close friends were also negatively affected. There would not be very many of us who could say that they have not experienced problems in some, if not all, of their relationships that were caused by having Fibromyalgia. It is very hard to get people to understand what it feels like to have Fibromyalgia. There are still plenty of people who do not even acknowledge that it is real. The way our symptoms come and go, and change in intensity make it hard for even our closest friends and family to understand what we are going through. One minute we are quite functional, the next we can be in bed. There is not much we can do about those who do not care enough about us to make any real effort to understand. For the rest though, the best thing that we can do is to educate them about Fibromyalgia. You can share the latest research, this newsletter, take your spouse/partner with you to doctor’s appointments, maybe take them along to a meeting or coffee morning so that they can meet other Fibromyalgia sufferers and see that you are not the only one with ‘crazy’ symptoms. It may seem unfair, but we need to be understanding and patient with our friends and family. Try not to let yourself be pressured into doing more than you are able to do. Maybe invite your friends to do things that you can easily do. It is important to maintain relationships, to try to have some kind of normalcy in our lives. Fibromyalgia can be very isolating, and anything that you can do to minimise that can only be good for your quality of life.

BEFORE YOU GO TO BED . . .

We all know now that there are foods that we should avoid before bed time (see last issue). There are other things that you can do to help with the quality of your sleep. Turn off your mobile phone. If you get a lot of calls late at night or early in the morning, turn off your phone or put it on silent. There is nothing worse than a call at five in the morning from someone in another time zone trying to sell you something. Turn off your computer. Whether it’s a desktop, laptop, notebook or tablet, turn it off! They all make noises that are so much more noticeable when you are desperate for sleep, and they always make those noises just as you are drifting off. The light from the screen can interfere as well. And all those super bright flashing LEDs all over everything… you can see them through closed eyelids. Watch what you watch. We all love a good horror flick or crime drama, and they always seem to be on when we should be winding down for bed. Bodies, whether covered with sweat or blood, are not exactly going to encourage your thoughts to be peaceful. Try watching a light comedy, reading, meditating or listening to music instead. Kick out the cat or dog. We all love our pets, but they can be noisy and smelly at times. They have different sleeping patterns to humans and are often up and about when we are trying to sleep. Don’t worry. Even if you make them sleep outside they will still love you in the morning. No booze before snooze. Remember hangovers? With Fibro we can be teetotal and still feel like we’ve been out on the town all night. Why would you think that alcohol before bed would be a good idea? Alcohol lightens the sleep, disrupts the quality of sleep and people have more awakenings when they've been drinking too close to bedtime. Doctors recommend putting the bottle away at least three hours before you retire. Alcohol can also play havoc with your medication. FS N WA

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COFFEE MORNINGS

Here is a list of our current social coffee meets: Name

Day of the month

Times

Place

Host

Bunbury

1st Tuesday

10am-12noon

Dome Café Bunbury Forum

Amanda

Mullaloo

2nd Friday

10:30am-12noon

Two Cows Café, Mullaloo Shopping Centre

Jacque

Gosnells

2nd Monday

10am-12noon

The Hub, 2209 Albany Hwy, Gosnells

Michelle

Geraldton

2nd Tuesday

10am-12noon

The Coffee Nook. Cnr Shenton & Milford Streets Jean

Innaloo

2nd Tuesday

1:30pm-3pm

IKEA. Sunray Drive, Innaloo

Bicton

2nd Wednesday

10:30am-12noon

Walters River Café. Point Walter Reserve, Bicton Wendy

Kings Park

3rd Saturday

10:30am-12noon

Botanical Café. Near Memorial. Kings Park

Stuart

Mandurah

3rd Tuesday

10:30am-12noon

Josephine’s Café. Smart Street Mall. Mandurah

Donelle

South Perth

3rd Wednesday

10:30am-12noon

Millpoint Caffe Bookshop. 254 Mill Point Rd

Renata

Wanneroo

4th Friday

10:30am-12noon

Dome Café, Conlan Street, Wanneroo

Karen

Rockingham

4th Friday

1:30pm-3pm

Rockingham Library, Dixon Rd. Room 2

Julie

Albany

Last Wednesday

10am-12noon

Kate’s Place Café, Stirling Tce, Albany

Sian

Cannington

Last Thursday

10:30-12noon

Miss Mauds, (near Coles) Westfield Carousel

Claira

Judy

New this time are the Innaloo meet, which is in the afternoon, and the Cannington meet. We are always happy to look at new suggestions for venues and times. Just drop us a line with your ideas! The coffee meets are casual get togethers. A great opportunity to meet and chat with people in your area and are very popular with the people who attend. Some of our members go to more than one, sometimes travelling long distances to attend.

Gina

Coffee Morning Coordinator

FIBROMYALGIA A SPECTRUM DISORDER?

Some researchers contend that Fibromyalgia is not an illness in itself, but is rather a spectrum disorder. That is, an illness made up of a range of linked conditions, sometimes including specific symptoms and traits. Another way to look at it is a syndrome composed of subgroups of symptoms that can be experienced in various numbers and intensities. A study of 2445 subjects randomly selected from the general population was conducted in Germany to evaluate Fibromyalgia in the general population. They looked at the percentage of the population that had Fibromyalgia, the demographics of those people, and the extent of their symptoms. They found that:

*

2.1% of the population sampled had Fibromyalgia.

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Prevalence rose with age.

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Fibromyalgia patients had markedly abnormal scores for all criteria measured.

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The collected data points towards Fibromyalgia being a ‘dimensional’ or ‘spectrum

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38.5% of Fibromyalgia patients satisfied the proposed criteria for a Physical Symptom Disorder.

disorder’.

What does all this mean? If Fibromyalgia ends up being considered a spectrum disorder, it will affect the way that it is diagnosed and how symptoms are measured. Using the diagnostic guide that these scientists recommend, Fibromyalgia would be diagnosed if there was a certain, specific combination and number of symptoms. Source: Arthritis Care and Research, February 19, 2013

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JUST

A THOUGHT...

The Next time you hear a family member or a friend put himself/herself down, say something like this: “Don’t be mean to yourself.” We all can be hard on ourselves sometimes. It’s one thing to hold yourself to a high standard and another to be downright mean though. When you catch others putting themselves down unnecessarily, you can help them to stop. In the process, you might be more likely to stop yourself next time you are unnecessarily harsh with yourself.

You know that processed foods aren’t good for you. It’s not healthy to eat six-syllable ingredients that you can’t pronounce. You know this… but how often do you break your own rules and eat junk? To give you an idea of your real intake, write down the name and quantity of all the processed foods that you eat for one week—and them take a good look at the list. It will help you see what you are really eating—and knowing that can help you cut back.

THE NOT-SO-GREAT BENEFITS

OF

SNRIS

A lot of Fibromyalgia patients have been eagerly awaiting the arrival of milnacipran (to be marketed as Joncia in Australia) in pharmacies. A review of research conducted by the very reputable Cochrane Library about the effects of serotonin and noradrenaline reuptake inhibitors (SNRIs), including milnacipran and duloxetine (Cymbalta), on Fibromyalgia patients may make you wonder whether it’s worth the wait. The researchers found ten relevant studies with up to 6038 participants and summarised the results. They found that adults with Fibromyalgia, who took duloxetine or milnacipran rather than a placebo, were likely to have:

* * * *

Reduced pain Slightly improved quality of life and reduced fatigue No improvement for sleep problems More drug-induced side effects and a greater likelihood of stopping medication.

There was no difference between the two drugs where it came to serious side effects like liver damage and risk of suicide. Those risks were minimal. Fibromyalgia patients are prescribed SNRIs to increase the concentration of serotonin and noradrenaline in the brain. These chemicals are involved in the regulation of pain, sleep and mood. Low concentrations of serotonin have been reported in people with FMS. The best estimate of what happens to people with Fibromyalgia when they take duloxetine or milnacipran for an average of 18 weeks versus the placebo are:

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29% of people taking the drug reported that pain was reduced by half, whilst 19% of people

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There was no real difference between people taking duloxetine or milnacipran, and the placebo,

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People taking the drugs scored their quality of life as 14 (on a scale of 0 to100). People taking

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20% of people taking the drugs stopped due to side effects. 11% taking the placebo did the

taking a placebo reported the same. This means that only 10 people out of 100 benefited from taking duloxetine or milnacipran. regarding fatigue levels and the amount of sleep, ie: not benefit. placebo scored theirs as 10. That is only a 4% improvement. same.

We often do not have precise information about side effects and complications. This is particularly true for rare but serious side effects. Possible side effects may include nausea, dry mouth, headache, constipation and hyperhidrosis. Rare complications may include suicidality, liver damage, abnormal bleeding, elevated blood pressure and urinary hesitation. Of course, you could be one of those very lucky people who DO get a substantial benefit by taking one of these medications. Like everything with Fibromyalgia, it seems to be pot luck. Later this year the Cochrane Library will release information about pregabalin (Lyrica). Häuser W, Urrútia G, Tort S, Üçeyler N, Walitt B. Serotonin and noradrenaline reuptake inhibitors (SNRIs) for fibromyalgia syndrome. Cochrane Database of Systematic Reviews 2013, Issue 1. Art. No.: CD010292. DOI: 10.1002/14651858.CD010292. FSNWA

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BELIEVE IT . . . OR NOT

How do you think that you cope on a day to day basis? How positive are you? Did you know that scientists can measure your ability to complete task and goals? It is called ‘self-efficacy’. It is like the placebo and nocebo effects. Your belief in yourself and what you can and can’t do has a big impact on whether or not you will actually complete tasks and achieve goals. If you are a firm believer that you can do nothing to improve your situation and that you just can’t get anything done, chances are you will achieve what you believe. Nothing. Conversely, if you are a positive person who is always striving to get tasks done, sets goals and works towards them with a firm belief that you will succeed, then your chances of succeeding are greatly improved. Researchers in San Diego have studied self-efficacy and its effects from several standpoints and in different settings. They have looked at the background behind how people develop self-efficacy, and they have studied the relationship between how people see themselves and their attitudes to life. It turned out that self-efficacy was the ONLY significant predictor of depression, physical functioning, and pain intensity ratings. Self-efficacy affects every area of human endeavor. By determining the beliefs a person holds regarding his or her power to affect situations, it strongly influences both the power a person actually has to face challenges competently and the choices a person is most likely to make. These effects are particularly apparent and compelling with regard to behaviors affecting health.

So basically, positive thinking leads to positive outcomes. Anne Reid Room at the Melville Library , behind Garden City Shopping Centre. Thursday 2 May at 1pm Cost: $4

MAY MONTHLY MEETING

Melinda Edgeworth is from the Disability Discrimination Unit (DDU), an organisation that provides free information and advice to people who feel they have been discriminated against due to their disability. That is anyone with: * A physical disability like quadriplegia, blindness or deafness,

* * * * *

An intellectual disability like autism, Organisms in body which do or are capable of causing disease including HIV, Psychiatric illness, Learning disorders like dyslexia. Illnesses like Fibromyalgia and Chronic Fatigue Syndrome. Please check the Calendar (here) for details.

Here’s a map:

EMOTIONAL TRAUMA AS A CAUSE QUESTIONED There has long been anecdotal evidence that emotional trauma and major stress have been a contributing cause of Fibromyalgia. However, a new study from the University of Lisbon, Portugal, disagrees with this. The study evaluated the relationship between disability, physical and mental health, and potentially traumatic life events (PTLEs). The impact of Fibromyalgia, physical and mental health status, pain, PTLE in childhood and not in childhood, and contributing factors were assessed in a sample of 50 women with fibromyalgia, aged 25-70. There were no statistically significant relations between the health levels and the PTLE. The predominant attribution was to a physical event. The results raise questions about the importance of the psychological impact of emotional trauma on patients with Fibromyalgia. The sample was only 50 women, so as usual, more study is needed.

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THANK YOU!

Susy from Sew Logo Embroidery, Bentley has very kindly donated some beautifully embroidered products for us to use as gifts and raffle prizes. Please support this generous, Fibromyalgia Support Network friendly business. Their rates are very competitive. You can contact Susy by phone on 0416 176 187 or email her at [email protected]

FIBROMYALGIA SUPPORT NETWORK

There is always a lot going on behind the scenes at the Fibromyalgia Support Network. Last year we became Incorporated and a Registered Charity. This enables us to accept taxdeductible donations and apply for funding grants. In the middle of last year most of our Management Committee changed. At the AGM a new President and Vice President were elected, and we welcomed two new committee members. Now that we are Incorporated we have certain legal and statutory requirements. One is that we have the full name and postal address of all of our members. A lot of people have not updated their contact details. This can be done by clicking on the link at the bottom of the email that this newsletter was attached to. Another requirement is that we have various insurances. These are quite expensive and we cannot apply for funding to pay for them, we must depend on donations. We are in the process of transitioning from a ‘kitchen table’ organisation to one that is much more professional. We aim to have an office with staff and a phone line, as well as dedicated meeting rooms for our monthly educational meetings and committee meetings, in the not to distant future. Two of our committee are part of a consultative committee at ConnectGroups (a ‘hub’ organisation for all support groups) that is planning to set up a space with meeting rooms, offices and equipment that we will be able to share. They are an incredibly supportive organisation and have just awarded the Network a $6000 grant to buy computer and video equipment. We expect that from April we will be able to record our monthly meetings and post them on our website for those of you who can’t make it along on the day. We are also in the process of applying for Lotterywest funding for a brand new website that will be much easier to find, more appealing, user friendly, secure and functional. With that new website we will be changing our internet domain name to something easier to remember and type. We will need new banners, brochures and other printing that reflect the new domain name and associated email addresses. Our membership continues to grow at an incredible rate. We are averaging over 40 new members a month. Awareness of Fibromyalgia and the spread of knowledge about Fibromyalgia is growing with that increase in membership. This is a very exciting time for the Fibromyalgia Support Network and we are very pleased that there are so many of you that are sharing that excitement with us and helping us grow. If you would like to contribute towards our financial expenses you can make a tax deductible donation via our website …

CAN YOU WRITE?

We are looking for contributions for this newsletter. It could be something about your experiences with Fibromyalgia, something useful that you have learned, something that you have read. Basically anything Fibromyalgia related. Even a funny story or joke. We are also looking for people who, when given a topic or reference article, can write articles for the newsletter. If you can write and would like to submit something please contact us. Articles can be 500 words (a page), 250 words(1/2 page) or just a short 'snippet'. We look forward to seeing what you have to contribute. FS N WA

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The Fibromyalgia Support Network Western Australia Inc. is a not-for-profit organisation and registered charity run wholly by volunteers, nearly all of whom have Fibromyalgia. Our aims include raising awareness of, educating about, and supporting people with, Fibromyalgia. We have over 1200 members, and do not charge for that membership. www.FibromyalgiaWesternAustralia.com [email protected] Emails will be forwarded to the applicable committee member

Fibromyalgia Support Network c/o Centre for Neurological Support The Niche 11 Aberdare Road Nedlands WA 6009

OUR COMMITTEE Sascha (President) Stuart (Vice President & Web Administrator) Sue (Secretary) David (Treasurer) Gina (Coffee Coordinator) Renata (Advertising) Karen (Committee Member)

Our activities include monthly meetings, social coffee mornings, newsletters, online networks, and our website and forums. It is important to note that the Fibromyalgia Support Network does not provide counselling services but rather facilitates networks for people to connect and create their own support. If you have any health concerns you should contact your health professional in the first instance.

GET TO KNOW YOUR COMMITTEE Sascha has been a committee member of the Fibromyalgia Support Network of WA (FSNWA) since 2009 and was elected as President in 2012. Professionally, Sascha is employed as a marine biologist and also works in a not-for-profit organisation in the disability sector in Perth. Sascha is a mother of two beautiful children aged 10 and 7 years old. Diagnosed with Fibromyalgia in 2000, Sascha manages her condition with hot baths, topical magnesium oil, camomile tea, yoga (when time permits) and the help of an understanding family. Sascha enjoys spending time at the river with her family and dog and has recently taken up kayaking. She is very proud to be involved with the FSNWA which facilitates invaluable support networks for all of our members and their families.”

Rozanne (Committee Member)

SPREAD THE WORD! Our new Fibromyalgia Information Leaflet is now available. If you would like some copies to leave at your doctor’s surgery or elsewhere, please email us and we will post some to you. They are also being sent out to the coffee morning hosts and are available at our monthly meetings.

All opinions expressed in the Fibromyalgia Support Network newsletter are those of individuals and not necessarily those of the committee or membership. Any advice, either explicit or implied is not intended to replace qualified medical advice. Individuals should consult with their own doctor or health professional for specific medical advice. No part of this publication may be reproduced or distributed without the prior consent of the Committee of the Fibromyalgia Support Network. WA Inc.

You can also download it and print your own. Click here...

Do you know someone that is part of an organisation, business or company? We are looking for corporate sponsors to help with the ongoing costs of running the Fibromyalgia Support Network. We have over $6000 in costs that we cannot apply for grant funding to pay for. We MUST raise this money with donations and sponsorship. If you know someone who may help, please contact us. FSNWA

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