FIBROMYALGIA SUPPORT NETWORK

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1 CONTENTS: FIBROMYALGIA SUPPORT NETWORK APRIL NEWSLETTER 2010 FROM MY DESK INTERNATIONAL FIBROMYALGIA AWARENESS DAY EVENING FORUM FIBROMYALGIA RESEARCH UPDATE DOCTOR JOKE HEALTH CARE PROVIDER REGISTER FOR FIBROMYALGIA COFFEE MORNINGS NOW IN MANDURAH RESTLESS LEGS REPOSE YOGA CLASSES SUPPORT GROUP YOUR COMMENTS STRESS NEXT MEETING COMMITTEE MEMBERS Disclaimer: 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 their own doctor or health professional for specific medical advice 1

2 From my desk This week we have launched our beginner web site. Our thanks go to our committee member Donelle who manoeuvred us around the web site at our committee meeting last Friday. We all have many wonderful talents but are all not technically orientated. Donelle is learning web design as she goes and we are all very impressed! To find our web site type in our domain name Please feel free to add your suggestions through the contact us tab. As beginner web site masters, we are happy to receive advice that will enhance the site. The most important aspect of having the web site is that more people diagnosed with Fibromyalgia here in the west will be able to find us more easily. International Fibromyalgia Awareness Day Evening Forum May 17th Make Fibromyalgia VISIBLE The above is the message for International Fibromyalgia Awareness Day This awareness day in May is now being recognized internationally. Here, in Western Australia the Fibromyalgia Support Network is commemorating Fibromyalgia Awareness Day by hosting an evening forum on the management of Fibromyalgia. The forum is Perth s contribution to the international campaign which is designed to Make Fibromyalgia Visible by providing the opportunity for patients, advocates, healthcare providers and the Fibromyalgia community to express their support and educate others about Fibromyalgia. We have great make Fibromyalgia VISIBLE bumper stickers for sale at the forum! Last year 170 people attended for a very successful evening. This year the Forum is on the evening of May 17 th at the Melville City Council Conference room. A panel of health professionals will present different aspects of the management of Fibromyalgia. This is a popular event and seating is limited so bookings are essential. Please note the flyer with this newsletter re the details. We would appreciate it if you could all be our publicity agents and find a notice board for this flyer. Final details are available on booking. Cost is $ 5.00 pp. Our thanks go to the City of Melville for their support for this function 2

3 Fibromyalgia Research Update In 1990 there were approximately 200 published research papers on fibromyalgia studies. Today there are more than 4500 scientific journal articles showcasing the wealth of fibromyalgia scientific thought and investigations. Ø Fibromyalgia Symptoms Eased by "Lifestyle Physical Activity" Researchers report that accumulating 30 minutes a day of "lifestyle" physical activity, by walking more, using the stairs, or gardening etc led to significant improvements in perceived physical functioning and reduced pain in a study of previously minimally active adults with fibromyalgia. "People with fibromyalgia are very sedentary because its major symptoms pain and fatigue make it difficult to become or stay physically active," Kevin R. Fontaine, PhD, associate professor of medicine in the Department of Health, Behavior, and Society at Johns Hopkins University School of Medicine in Baltimore, Maryland. From the current study, Dr. Fontaine suggests that even if people with FM cannot engage in traditional exercise, they can derive some benefits from simply incorporating short bouts of physical activity into their daily lives." (These findings are reported in BioMed Central's open access journal Arthritis Research & Therapy, pub) Doctor Joke Doctor, Doctor, I feel like an onion. Well, don t get in a pickle! Doctor, Doctor, I feel like a curtain. Well, pull yourself together! Doctor, Doctor, I think I am an apple We must get to the core of this! Doctor, Doctor, I think I am a bell Take this and if it doesn t help, give me a ring! (Courtesy Virtual Medical Centre) 3

4 Health care provider directory for Fibromyalgia patients If you wish to add your Health Practitioners name to the above directory or find out the details of a Health Practitioner in you area with a particular interest in the management of FM, please contact Sian Doughty Coffee Mornings Bicton (look for the red scarf wearer to identify the groups) Our coffee mornings are held on the third Friday of the am. The next coffee gathering is Friday 21 st May. Coffee mornings are at the Walter s River Cafe in Bicton (off Honour Ave or Burke Drive, Point Walter Reserve). Mandurah Coffee mornings are starting in Mandurah on the third Friday of each month at 10.30am at The Dome in Halls Head. The first of these coffee gathering is on Friday 21 st May. North of the river We have some members from north of the river who would like to start a coffee morning. However we need an anchor person for the group. If anyone is interested please contact Kaye () It is jus t a matter of finding a suitable place where the coffee is excellent, wearing a red scarf on the coffee morning and having your in the newsletter and on the web site so northern coffee goers can find you. Men s coffee group The meeting place, day and time are open for negotiation. If you are interested in joining a men s coffee morning chat, contact Ron. NB: Ron won t be wearing a red scarf but he will have something red on him or with him so you can find him! 4

5 Restless legs Recently I noticed in the Health Food stores an item for restless leg syndrome. I it is an oral spay developed by Martin and Pleasance. It is a combination of homoepathic s and Schuessler tissue salts. I have not heard any reports on the effects of this on symptoms. Has any one tried this? Repose Yoga Mia Faletti has commenced repose yoga classes in Nollamara, South Perth, and Mount Hawthorn. Dru Yoga is a graceful flowing style of yoga which is suitable for people of all ages and fitness levels. Mia for details on [email protected] support online group: The group is an extension of the Fibromyalgia Support Network where members are invited to join. Donelle is site manager for the group. If you wish to join the support group, please Donelle directly on Your comments this month from the support online group Ø From T Hi all, I have just watched this show from the ABC "Stress: Portrait of a Killer" and it made me wonder about how much stress some of us may have been under when the FM symptoms took hold. If you can spare the bandwidth, the show is here: Ø From B Hi, I saw this article posted on National Fibromyalgia Association s Face book page about tips for parents with Fibromyalgia. As a mother of 2 young children (9 & 6) I found it quite interesting and helpful, so thought I would post the link for anyone else interested. Chronic pain adds an extra challenge to every task, to every relationship, to every aspect of life and parenting is no exception. Click on the link below for a selection of the best tips we received for parents with FM. 5

6 Ø From C Recently I was having problems with my 5yr old knee replacement & fibro (and still am but now have a great rheumatologist who is sorting me out). When I had my knee replacement I listened to a CD by Gyuto Monks of Tibet called the practice of contentment - a meditation guide (ABC Shop). It works a treat for pain management. Stress A friend ed this article on stress. A lecturer, when explaining stress management to an audience, raised a glass of water and asked, 'How heavy is this glass of water?' Answers called out ranged from 20g to 500g. The lecturer replied, 'The absolute weight doesn't matter. It depends on how long you try to hold it. If I hold it for a minute, it's not a problem.. If I hold it for an hour, I'll have an ache in my right arm. If I hold it for a day, you'll have to call an ambulance. In each case, it's the same weight, but the longer I hold it, the heavier it becomes.' He continued, 'And that's the way it is with stress management. If we carry our burdens all the time, sooner or later, the burden will become increasingly heavy: and we won't be able to carry on. ' 'As with the glass of water, you have to put it down for a while and rest before holding it again.. When we're refreshed, we can carry on with the burden. So, before you return home tonight, put the burden of work down: don't carry it home. You can pick it up tomorrow. Whatever burdens you're carrying now, let them down for a moment if you can.' Next meeting Thursday 1 st April Our guest speaker for the May meeting is Maureen Mclean. Maureen is the Disability Advisor from Centrelink and will be advising us on disability pensions and allowances, mobility allowance, pensioner education supplements and any other payment you need to know about. Bring your questions! 6

7 Meeting: Thursday 6th May Time: 1.00pm 3.00pm Cost: $3.00 Where: Anne Reid Room, Lobby of the Melville Civic Square Library (Behind Garden City) Car park entry via Davy Street, Booragoon Enquiries to committee members below Fibromyalgia Support Network committee: Kaye Brand: Sian Doughty: Donelle Aleckson: Sascha Gardner: Gedda Burnell: Gina Koval: Please feel free to contact any of the committee members with any suggestions or queries. Kind regards Kaye Kaye Brand PhD Physiotherapist Convener Fibromyalgia Support Network BE PASSIONATE ABOUT YOUR WELLNESS Let s make Fibromyalgia more VISIBLE at the Evening Forum for International Fibromyalgia Awareness Day! 7

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