FIBROMYALGIA SUPPORT NETWORK

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1 CONTENTS: FIBROMYALGIA SUPPORT NETWORK MARCH NEWSLETTER 2010 FROM MY DESK AUSTRALIAN ON LINE BOOKSTORE FIBROMYALGIA RESEARCH UPDATE THE IMPORTANCE OF AN ACCURATE DIAGNOSIS HEALTH CARE PROVIDER REGISTER FOR FIBROMYALGIA MEN ONLY COFFEE MEET! GARDEN CITY MALL WALKING GROUP COFFEE MORNINGS SUPPORT GROUP YOUR COMMENTS HEADACHES 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 I am writing to you while convalescing from major abdominal surgery. I am not a novice as a surgical patient but this experience has been very significant for me in regard to my continuing quality of life. I am very good at taking my own advice so in a few weeks I am going to Broome to sit by the ocean under my shell covered hat to look at the ocean and contemplate something! During this experience I have been thankful for a number of things in my life. Firstly I am so very thankful for a wonderful surgeon Mr Michael Levitt, for the support of my wonderful family and friends and for the skills I have developed to manage my life in most circumstances even with Fibromyalgia. I have learned from this surgical experience and hospital stay that: You need to know and trust your surgeon You need to understand why and how your surgery is being performed You need to be as fit as possible. You need to seek out a pre admission appointment with the anaesthetist You need at least one rose in your hospital room You need tissues by your bed for the tears You need your own soft pillow You need to take in your hot water bottle (you can use them in most hospital as long as you sign a form accepting full responsibility for any scalds, burns etc) You need to walk and move as soon as possible You need mints for nausea You need to know how to get in touch with the hospital Physiotherapist You need help at home when discharged You need patience and to know that time passes and time heals (my mantra!) Australian on line book store Recently I have increased my home Fibromyalgia Library. Previously I was using an international site on the web to source and buy FM books. However there is an Australian site which has an impressive list of Fibromyalgia books at good prices. If you are building an FM home library, check out this site! 2

3 Fibromyalgia Research Update Efficacy of acupuncture in Fibromyalgia syndrome a systematic review A small analgesic effect of acupuncture was present, which, however, was not clearly distinguishable from bias. Thus, acupuncture cannot be recommended for the management of FMS. (Ref: Rheumatology, Vol 49, Number 4, Pp ) Massage therapy for Fibromyalgia symptoms Massage therapy is widely used by patients with Fibromyalgia seeking symptom relief. We performed a review of all available studies with an emphasis on randomized controlled trials to determine whether massage therapy can be a viable treatment of Fibromyalgia symptoms. All reviewed studies showed short-term benefits of massage, and only one single-arm study demonstrated long-term benefits. The existing literature provides modest support for use of massage therapy in treating fibromyalgia. Additional rigorous research is needed in order to establish massage therapy as a safe and effective intervention for fibromyalgia. In massage therapy of Fibromyalgia, we suggest that massage will be painless, its intensity should be increased gradually from session to session, in accordance with patient's symptoms; and the sessions should be performed at least 1-2 times a week. (Ref: Rheumatology Int Mar 20 ) Tilt vibratory exercise improves the dynamic balance in Fibromyalgia The objective of the study was to evaluate the feasibility and efficacy of tilt wholebody vibration for improving dynamic balance in women with fibromyalgia (FM). METHODS:: Forty-one women (aged 41 to 65) were randomly assigned to either a vibration (n=21) or control (n=20) group. The vibration intervention consisted of a 30- minute session of instruction plus 3 sessions of whole-body vibration per week over a period of 12 weeks. Each vibration session consisted of 6 repetitions of a second 12.5 Hz vibration. The dynamic balance of the vibration group improved by 36%, as compared to baseline, whereas that of the control group was unchanged. The vibration program was useful and feasible for improving dynamic balance in women with FM. These novel results support further research aimed at the development of physical therapy programs that utilize controlled vibration. (Ref: Arthritis Care Res 2010 Mar 16) 3

4 The importance of an accurate diagnosis of Fibromyalgia Every week I am speaking with people who have been diagnosed with Fibromyalgia. Often their diagnosis has been made years ago and they have not sought a recent review with their diagnosing GP or Rheumatologist. Recently, a friend of mine from Sydney was diagnosed with Fibromyalgia by her local doctor. The GP was not 100% sure of the diagnosis and referred her to a Rheumatologist for confirmation and/or further investigation. She has since been diagnosed with a condition called Osteomalacia as well as Fibromyalgia. Osteomalacia is the softening of the bones due to defective bone mineralization. It may show signs as diffuse body pains, muscle weakness, and fragility of the bones. A common cause of the disease is a deficiency in vitamin D, which is normally obtained from the diet and/or sunlight exposure. Osteomalacia in adults starts insidiously as aches and pains in the lumbar (lower back) region and thighs, spreading later to the arms and ribs. The pain is symmetrical, non-radiating and is accompanied by sensitivity in the involved bones. Proximal muscles are weak, and there is difficulty in climbing up stairs and getting up from a squatting position (Ref: Wikipedia). My friend is now being aggressively treated for osteomalacia. It is so important that we are vigilant re an accurate diagnosis for the symptoms that we are experiencing. A review every two years enables the Rheumatologist, Neurologist or GP to monitor your condition, reconfirm your diagnosis and to advise what progress has been made in the treatments of Fibromyalgia since your last review. Health care provider directory for Fibromyalgia patients Our Health Care Provider Directory of health professionals who have an interest in Fibromyalgia who are recommended by you through you own personal experience has become a reality. As the Fibromyalgia Support Network, we are not recommending or endorsing any providers and are therefore not liable for any decisions made in connection to this referral list. This list may be of particular benefit to newly diagnosed people who are unsure who to consult or where to start in their FM management. If you would like to recommend your health care provider as a Fibromyalgia aware practitioner, or check out the list, please contact Sian Doughty 4

5 Men only coffee meet The coffee morning for men is set to go. However we have not heard from any men yet!! I know there are a lot of men out there with FM as I have spoken with many of you. Ron has offered to be the anchor person for this monthly event. The meeting place, day and time are up for negotiation. If you are interested in joining the Men s Fibro coffee meet then please contact Ron. [email protected] Tel: Garden City Mall Walking Group Exercise in a safe environment by joining trained walk leaders inside Garden City every Tuesday and Friday between 8am and 9am. The work out includes warm up, stretching, walk and cool down. What: Garden City Mall Walking When: Every Tuesday & Friday at 7:45am Where: Meet in centre court, in front of The Coffee Club The walking group walks inside Garden City between 8am and 9am every Tuesday and Friday. The group is lead by trained walk leaders and includes a warm up, stretching, walk and cool down. Different routes in the shopping centre have been designed to cater for all ability levels, with distances ranging from 250m to 1km. The program is run by ICCWA in association with Garden City. Walking is a low cost form of exercise. To register for the walk please call the Injury Control Council of WA (ICCWA) Coffee Mornings To date we have only been having coffee mornings south of the river. A new member Liz has offered her help re coffee or meetings north of the river. If you live north and would enjoy a chat with others with FM to learn the short cuts, then me and I will pass the details on to Liz Our coffee mornings are held on the third Friday of the am. The next coffee gathering is Friday 16th April. Coffee mornings are at the Walter s River Cafe in Bicton (off Honour Ave or Burke Drive, Point Walter Reserve). If you have a red scarf, please wear it so new members can find us. If you do not own a red scarf, anything red will do! 5

6 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 There has been such a variety of topics discussed this month! Your comments this month from the support online group Ø From T Not sure if anyone has come across this web site before. It seems quite interesting Ø From P I just thought I'd chime in here and suggest to you that you would greatly benefit from the Fremantle Hospital PUMP program. The pain clinic goes for 4 weeks. You attend 4 hours each week day morning over the four weeks and they build you up physically, psychologically and emotionally, to the point where by the end you are almost ready to take on the world. Believe me; the program can have that effect on you. But the work, although difficult at first, is very rewarding and you learn so much about your body. You should consider the program. Ø From L I went to a rheumatologist for the first time last week (it's official, I have fibro :( ) and this is exactly what he said to me about exercise. He said that it is the best treatment for fibro and that I have to build up over time to 60 minutes a day! Egad!! Just can't imagine that at the moment. I'm off to do 5 minutes on the bike now, thanks for the info. Ø From J I also read all the s and don't say much, but this time I felt that I needed to add my bit! You are so right in saying that we MUST keep moving, no matter how difficult it is. Several years ago, I was in a similar state, and a physio in Albany got me going again. Hydrotherapy was the thing for me, as well as the sports massages, etc. At the time I was at the physio every day, either for treatment or for hydro. We have since moved to Perth, as the weather here is kinder for my fibro. Alas, no hydrotherapy pool was close by, so we've invested in a swim spa. I go in EVERY DAY, without fail, even when I don't "feel up to it". My husband is a great motivator here! Most times I do stretches, sometimes I can do more bouncing on the spot, and on my bad days, 6

7 I simply float. The water is kept constant at 35.5 degrees. It really keeps me going, and even the days that I only float, I feel better when I get out. As for your restless legs, I also have had them, and they are no joke! Magnesium supplements are great! I got mine from the Point Walter pharmacy, as you have all been discussing, which comes in a powder. Mix with water, and let sit for a few minutes, was the instructions. I was told you need to be careful with the tablet form as your body doesn't always absorb it in that state. I've just gone over to a topical spray of Magnesium oil (produced by Nutri-Tech Solutions) where I spray it on my feet and rub in. This is marvelous. I haven't slept so well for years! As I read the s, it amazes me that so many of us dealing with FM have learnt to tune in to our bodies. That, I feel, is one of the most important things when learning to live with the syndrome. It's the only way we can work out what works, and what doesn't. It is also the only way to stay well. The minute we don't listen to what our bodies are telling us, a flare up happens. I guess what I am saying is that we need to be alert, be attentive, and be well! From R I look forward to receiving the newsletter about the support group. I will definitely be attending the upcoming meeting on 1 April. This is the first hope I have been given since being diagnosed in October last year and it means a great deal. Every doctor and specialist I have dealt with so far has told me there is nothing they could do for me apart from prescribing D which hasn't made a difference to my symptoms. To be able to discuss my illness openly with others who will understand will be a first. I discussed it with my mother this evening who is the only person who has tried to support me and she has committed to attending the upcoming awareness event in May. From J Is it possible to work from home? I work 30 hours per week as Director for.., and have set up an office at home. This works for me because our... Most of the contact I have with them is by phone or . The internet is my main tool to keep abreast with developments in the field, etc. I too have had a fibro flare up. At the beginning of the year I requested that staff, clients, parents and Board members do not phone me between 1.30 and 7 pm. This allows time for a rest, and family time when the children and husband come in at the end of their day. It does mean that I need to work some evenings, but that is the beauty of working from home. It allows for greater flexibility in when you work. If I have a particularly difficult day, I do what needs to be done, and leave the rest. I then catch up on a better day. 7

8 I've also been working smart this year. Someone advised me last year that it is not necessary to do all the work myself. "Surround yourself with people who have foresight, are enthusiastic for the cause, and are able to complete projects well. Also, get to know your staff, and utilise their strengths. Be creative in getting others to do tasks that are time wasters for your position, but will assist in the career development of another employee." I spent a lot of thinking time over the Christmas holidays thinking about how to implement this advice. As things have cropped up this year, I have been able to implement this, and am really happy with the results. It not only helps me to keep my head above water, but it also lifts the morale of staff if they see that they have greater variety in the work they do, and that they are able to contribute in different ways. From S What is your body saying? "Many people treat their bodies as if they were rented from Hertz -- something they are using to get around in but nothing they genuinely care about understanding." -- Chungliang Al Huang "As we explore the extraordinary interplay of energies between the many aspects of our personality -- our needs, unconscious reactions, repressed emotions, aspirations and fears -- with the functioning of our physical system and its capacity to maintain itself, we soon realise how very wise the body is. With its intricately detailed systems and operations it portrays infinite intelligence and compassion, constantly giving us the means to understand ourselves further, to confront issues we are not looking at, and to go beyond that which is holding us back." -- Deb Shapiro, Your Body Speaks Your Mind Headaches Because of the number of posts on the support arm re headaches, I have asked a Sports Physiotherapist and colleague to comment on the role of mobilization of the neck for the relief of headaches. His reply is from a Physiotherapy newsletter discussing cervicogenic headaches. Hope it helps! The neck is one potential cause of a headache. The upper cervical levels have direct referral patterns to the head via the upper cervical nerve pathways and most certainly can be a contributing factor to headache. Stiffness and lack of mobility is often limited at these upper levels and techniques such as mobilisation (movement) of these joints can decrease the referral of pain. Joint stiffness is often associated with muscle tightness and in conjunction with mobilisation of the joints soft tissue techniques to address the tight muscle tissue may be required to assist with relieving headaches. In an acute situation a headache of cervical origin can be managed well following this type of intervention with relatively quick relief of pain. In the chronic situation the neck related headache will also respond to mobilisation techniques in conjunction to addressing other issues such as muscle imbalances, postural positions etc. But generally if upper cervical joint stiffness is evident and contributing to the headache then mobilisation techniques can be a very effective treatment alternative. 8

9 Next meeting Thursday 1 st April Fibromyalgia can be overwhelming!! Enquiries to Donelle Mob: or How much do you know about Fibromyalgia? Come and join a Quiz Master Extraordinaire and find out! Fibromyalgia Support Network committee: Meeting: Thursday 1st April 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 Please feel free to contact any of the committee members with any queries. Kind regards Kaye Kaye Brand PhD Physiotherapist 9

10 Convener Fibromyalgia Support Network Tel: BE PASSIONATE ABOUT YOUR WELLNESS 10