Living Well with Fibromyalgia June 2012
Volume 1: Issue
Welcome to the first issue of Living Well With Fibromyalgia. I am not sure, as yet, how often this newsletter will be produced. That may depend on you. Currently, I am the one and only contributor, and I have sourced articles from all over the internet. I hope, in time, that you will help to make this newsletter another successful resource for Fibromyalgia sufferers. It is my intention to have a feedback page or section (of course, not in this first issue). I would love to include some of your stories about how you deal (or don’t deal) with FM; and, maybe we can include a tips page, as I’m sure that some of you have hit upon ways to make things a little easier that more recent sufferers don’t know about. Please let me know what you’d like to see in further issues. In this first issue, we will start with the basics first. Many of you know this stuff but, for the sake of completion, we need to start at What is Fibromyalgia. Then I’ve had a quick look at some alternative therapies.
What’s Inside 2
What is Fibromyalgia
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Fibromyalgia & Exercise
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A Prescription for Exercise
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Living Well with Fibromyalgia: a nonpharmacological approach
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How to Try Mindfulness Meditation
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From FACEBOOK
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Research News
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Men get Fibro, too!
Enjoy.
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What is Fibromyalgia? Fibromyalgia: what is it?
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 © 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 FibrModem at fibromodem@bigpond.com.
Fibromyalgia syndrome (FMS, FM or fibromyalgia) is a term used to describe a cluster of symptoms that may include widespread pain & tenderness in ‘trigger points’ on the body that are abnormally sore to touch. FM comes under the ‘umbrella’ of arthritis & other musculoskeletal conditions. People with FM may also experience fatigue so extreme that it is difficult to do normal daily activities, problems with concentration & memory (often called ‘fibro fog’), depression, sleep disturbances, memory problems, irritable& and distress. These symptoms can vary in intensity; & like the pain of FM, can come and go over time. There is significant overlap between FM and chronic fatigue syndrome,1 the main difference being that FM generally involves a greater pain component & chronic fatigue syndrome a greater fatigue component. There is still considerable confusion surrounding FM, both among health care professionals & the wider community; & the condition may not always be taken seriously. This appears to stem from previous controversy regarding definition & diagnosis. Who does it affect? • Fibromyalgia affects 2 to 4 per cent of the population, predominantly women.
• While fibromyalgia is more common in women, men and adolescents can develop the condition. It tends to develop during early and middle adulthood or during a woman's childbearing years. People with lupus, rheumatoid arthritis, or ankylosing spondylitis may be at risk of developing fibromyalgia. Diagnosis • Fibromyalgia can be very difficult to diagnose because it does not cause inflammation or damage. There are no blood tests, muscle biopsies, x-rays or scans that can be used to make a diagnosis (however, there is new research evolving every day). • Fibromyalgia does not cause inflammation or lasting damage to the muscles or joints; but because it can cause chronic pain and fatigue similar to arthritis, it is often a rheumatologist who makes the diagnosis. No one knows what causes fibromyalgia. In some people it can be triggered by an illness such as a virus; by pain and/or stress from an injury or accident; or by emotional stress and depression. For many people, fibromyalgia starts without any obvious cause. However, we do know that people with FM can have abnormal levels of
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Living Well with Fibromyalgia
Substance P in their spinal fluid, a chemical that helps transmit and amplify pain signals to and from the brain. For someone with fibromyalgia, it is as though the ‘volume control’ is turned up too high in the brain’s pain processing areas. Genetics also appear to play a role, leading to a familial tendency to develop fibromyalgia. Physical, emotional or environmental stress may also trigger the start of fibromyalgia symptoms. • Currently, there is no cure for fibromyalgia. While there are ways you can control your symptoms, you should be wary of any products or treatments that claim to cure fibromyalgia. • The symptoms of fibromyalgia may range from very mild to severe. They may last for many years, or they may wax and wane at different times. Fibromyalgia is usually not disabling. With the right advice and over time, most people learn to manage the pain and tiredness. You may need to seek input from appropriate health professionals if the pain is particularly severe and affects your everyday activities. Treating & Managing FM • The main treatment for fibromyalgia focuses on selfmanagement. Drug therapy plays a small role and is used primarily to treat the symptoms. For example, you may be prescribed pharmacological treatments for dealing with the pain or improving the disrupted sleep
patterns of fibromyalgia. Your doctor may also prescribe SSRIs (selective serotonin reuptake inhibitors) which are used to help people with depression. • Always talk to your doctor or pharmacist before you start taking any medicines. Even natural and over-the-counter medicines can have side effects. • Complementary & alternative therapies can be useful for helping cope with the pain of fibromyalgia, although these treatments have generally not been well tested or researched. Therapeutic massage to manipulate the muscles and soft tissues of the body may alleviate pain, discomfort, muscle spasms and stress. • By learning all you can about fibromyalgia, you can play an active role in your treatment. Not all the information you read or hear about is trustworthy so always talk to your doctor or healthcare team about any treatments you are thinking of trying. • Self-management courses can help you develop skills that enable you to become actively involved in your healthcare. • Exercise has been proven by research to help with pain and other symptoms such as fatigue and disturbed sleep patterns. Always start gently and slowly, and build up as you become fitter and stronger. Seek advice from a
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physiotherapist or exercise physiologist, particularly when starting to exercise. Balance activity and rest. Learn to listen to your body and be guided by it. Space out your week’s activities to give yourself time to rest. If you are having a bad day, be ready to change your plans and never force yourself to work through pain. An occupational therapist can teach you how to cope with fatigue and make your daily tasks easier. Keep to a healthy weight. While there is no clinical evidence that a special diet can help fibromyalgia, you will feel more in control of your body if you lose any extra weight and follow a healthy diet. Acknowledge your feelings and seek support. It is perfectly natural to feel scared, frustrated, sad and sometimes angry. But seek help if they start affecting your daily life. Look forward. Focus on what you need to do to get better, not what caused your condition.
Adams, Raymond D, Victor, Maurice & Ropper, Allan H 1997, Principles of Neurology, 6th ed, McGraw-Hill, New York
Source: American College of Rheumatology website, www.rheumatology.org, and Arthritis Australia website, www.arthritisaustralia.com.au
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Fibromyalgia and Exercise • People with arthritis and other musculoskeletal conditions should aim to complete 30 minutes of physical activity at moderate intensity* on most days of the week. • Safe physical exercise can be beneficial for people with fibromyalgia. • Before you start exercising, seek advice and supervision from a physiotherapist or exercise physiologist. • Avoid activities that involve fast, sudden movements and high impact activities. • You may find that your pain and tiredness increases when you begin exercising. If this happens, reduce the amount of exercise until you find a level that you can cope with. This can be a normal response to movements or activities that your body is not used to, and the pain and tiredness should gradually reduce over time once your body learns to adapt. • Start gently and build slowly. • Stop exercising if you experience unusual pain or more pain than is normal for you. Be aware that many people with fibromyalgia have a certain amount of constant pain. Stop only if you notice a different kind of pain or extra pain while you are exercising. • Don’t try to do it all at once. You may find it more comfortable to do a couple of short sessions during the day, rather than one longer session. • Prepare your muscles and joints by doing some gentle movements before you start exercising. Some people use heat packs or have a warm shower before and/or after physical activity. • Increase your incidental activity such as getting off the bus two stops earlier than usual or walking up stairs rather than taking the escalator or lift. *’ Moderate intensity’ means a slight but noticeable increase in heart rate and breathing.
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Living Well with Fibromyalgia
A Prescription for Exercise
help free up brain resources involved in perceiving pain and improve its ability to hold on to new information. The findings may help explain why regular exercise decreases pain and tenderness and improves brain function in people with fibromyalgia. (These findings were presented at a medical conference. They should be considered preliminary as they have not yet undergone the “peer review” process, in which outside experts scrutinize the data prior to publication in a medical journal.)
Has anyone told you why we need to exercise? (other than the ‘normal’ health reasons) Most of us have much more important things on our minds than exercise, like painful tender points, deep muscle pain, and fatigue, so why is exercise important for fibromyalgia? • Studies show that exercise helps restore the body’s neuro-chemical balance and triggers a positive emotional state. Not only does regular exercise slow down the heart-racing adrenaline associated with stress, but it also boosts levels of natural endorphins. Endorphins help to reduce anxiety, stress, and depression. • Exercise acts as nature’s tranquilizer by helping to boost serotonin in the brain. Serotonin is a neurotransmitter in the brain that scientists have found to be related to fibromyalgia. While only a small percentage of all serotonin is located in the brain, this neurotransmitter is believed to play a vital role in mediating moods. For those who feel stressed out frequently, exercise will help to desensitize your body to stress, as an increased level of serotonin in the brain is associated with a calming, anxiety-reducing effect. In some cases it’s also associated with drowsiness. A stable serotonin level in the brain is associated with a positive mood state or feeling good over a period of time. Lack of exercise and inactivity can aggravate low serotonin levels. • A new study, at the Georgetown University Medical Centre in Washington, D.C., suggests that exercise may improve memory in women with FM. Decreased brain activity, due to aerobic exercise, suggests that the brain is working more efficiently. The researchers suggest that one of the benefits of exercise for fibromyalgia patients is that it may streamline brain functioning. It may
What Are Other Benefits of Exercise for Those With Fibromyalgia? Regular exercise benefits people with fibromyalgia by doing the following: • • • • • • • • • • • • • • • •
burning calories & making weight control easier giving range-of-motion to painful muscles & joints improving a person’s outlook on life improving quality of sleep improving one’s sense of well-being increasing aerobic capacity improving cardiovascular health increasing energy placing the responsibility of healing in the hands of the patient reducing anxiety levels and depression relieving stress associated with a chronic disease stimulating growth hormone secretion stimulating the secretion of endorphins or “happy hormones” strengthening bones strengthening muscles relieving pain
How Can I Get Fibromyalgia?
Started
Exercising
With
If you want to start exercising, it’s important to start slowly. Begin with stretching exercises and gentle, low-impact activity, such as walking, swimming, or bicycling. Muscle soreness is normal when you are just starting an exercise regimen. But if you have any ‘abnormal’ pain, stop and call your doctor. You may have overworked or injured your muscles.
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Living Well with Fibromyalgia
Living well with Fibromyalgia: a non-pharmacological approach During the 1980s, Dr Daniel Lewis developed a personal interest in many traditional mind-body healing practices such as qigong, tai chi, yoga, breathing techniques, hypnosis & meditation. Initially, these interests were separate from his work as a physician & rheumatologist. However, he realised that these approaches appeared to resonate with people he encountered both within & outside his rheumatology practice, particularly those with painful & often difficult to categorise conditions such as fibromyalgia.
Stress, stress & more stress The human body is finely tuned to withstand most acute stresses, and for most of us coping with stress is a normal function. However, when the stress becomes prolonged, our
body over-produces stress hormones. If these persist in our blood stream they can damage many tissues. Ultimately, our body systems start to malfunction. Let’s take an example. Type 2 diabetes does not begin at any single point in time. Rather, the symptoms become evident when the pancreas fails to respond as a result of prolonged stress such as poor and over-nutrition, lack of exercise, & cigarette smoking. Stress and fibromyalgia There is growing, although not yet conclusive, evidence that this failure of the body to adapt to stress can be applied to the development of FM.
explosion of new knowledge and evidence about the condition, not least that FM symptoms occur as a result of an imbalance in the body’s ability to process pain. This imbalance is linked to abnormalities in the brain, central nervous system and the body’s hormonal system. What is the cause of this imbalance? And what can be done about it? These questions are not often asked in mainstream medicine, primarily because our medical system tends to focus on rapid responses achieved with drug therapy. And thankfully, the number of effective medications for the treatment of FM symptoms is increasing.
FM is generally heralded by warning signs, which are followed gradually by increasing symptoms until the full-blown expression of the condition develops. Indeed, about 80% of patients with FM report that widespread pain is preceded by long-standing localised or regional pain.
However, beyond the use of medication, there are other options for treating FM that are less recognised or researched, and some of these are supported by robust, definitive evidence as to their benefits for a variety of other health conditions.
While opinions vary as to the nature of FM, research in the last decade has resulted in an
This evidence is enough to encourage anyone with FM to explore these viable,
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Living Well with Fibromyalgia
Living well with Fibromyalgia:
inexpensive & nontoxic approaches to restoring health. I should like to focus on one of the many non-drug approaches to wellness – meditation. But first we need to understand the relationship between mind & body. Mind-body awareness Mind-body awareness centres on that multi-directional communication that takes place moment by moment between our brain and our body. No condition in the body can occur without a brain and mind response. Similarly, every thought and feeling registered in the brain is instantaneously registered in the body. There is no separation between mind and body. How do we know this? The basic sciences of quantum physics & epigenetics (how our mind & lifestyle can influence cellular biology) have revolutionised our understanding of the link between mind & matter. They teach us that we are not powerless bystanders or victims of our genes, & that how we live our life can make a difference. It is well known that good nutrition & exercise are among the many important environmental stimuli for health living & exert an
epigenetic influence. What is less well known is that our thoughts & feelings, & hence our perception of life events, can have a profound & possibly dominant influence on gene expression. Gene expression The body manufactures at least 100,000 proteins from ‘recipes’ contained within its genetic code. This process is called ‘gene expression’. For genes to be expressed the code has to be ‘read’. And although we are not sure exactly what does the ‘reading’, there is conclusive evidence to show that mind processes can be a potent stimulus for gene expression. “Mind-body awareness centres on that multi-directional communication that takes place moment by moment between our brain and our body. “ We know this from clinical trials that have demonstrated over a long period of time that the well-known placebo effect occurs in 30% of people who are given ‘inert’ or inactive medication without their knowledge. The placebo effect is not imaginary. It is a statistically proven, biological change produced by the mind. From neuroscience we learn that only 5% of the 60,000
thoughts we have each day are derived from the conscious mind. Ninety five per cent of the time our lives run on automatic – our subconscious mind. These subconscious processes influence gene expression. And, as has been shown in the placebo effect, they can be used to help us access & re-orient our subconscious mind to achieve wellbeing. When we recognise that FM is primarily a mind/body illness, we take a giant step towards achieving wellbeing. Meditation Meditation has been described as the art of relaxing the body & calming the mind. Essentially, it involves letting the mind become still & anchored in the present moment. This leads to relaxation & peace of mind, which generates health benefits. In the last two decades, medical science has come a lot closer to understanding how meditation can benefit people with FM. There are clinical studies that have demonstrated the effectiveness of a variety of meditation techniques for reducing pain, depression, anxiety & stress as well as positively enhancing mood
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Living Well Living well with Fibromyalgia:
with Fibromyalgia
states and quality of sleep. Feedback from my own experience of conducting meditation education and courses mirrors this research. How does meditation work? In a nutshell, the practice of meditation leads to a rebalancing of the sympathetic nervous system. The regular practice of meditation can induce permanent physical changes in the structure & function of the brain. These changes have been documented using functional MRI scans that show the practice of meditation can beneficially alter the balance of brain hormones & the function of the pain system in people with chronic pain and fibromyalgia. In the ancient traditions of Yoga, Buddhism, Judaism, Christianity, Sufism, Taoism & others, meditation is path towards an experience beyond our own consciousness - a universal consciousness that is aligned with the science of quantum physics. Focusing on a lifestyle strategy such as meditation to enhance health in fibromyalgia is not easy. It requires education, the gaining of new skills, and a commitment to implement the strategy on a daily basis.
Dr Daniel Lewis FRACP is a Melbourne based rheumatologist, Director of the Lewis Institute for Health and Wellbeing, www. pathways2wellbeing.com.au, and co director of the Deakin University Integrative Health Research Unit. This article was sourced from the Arthritis Victoria Update Newsletter, Winter 2009, Volume 22:Issue 2.
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Want to be part of a HUGE* Fibromyalgia Awareness project? Want to star in a movie? * My own hyperbolic description
The Fibromyalgia REAL video project I am putting together a new video to encourage awareness about Fibromyalgia. This time, I want it bigger!
This time, I want it better!
This time, I want it more professional!
This time, I want it REAL!
So I want some real faces. I want all colours, all races and all ages included. I really want to show that Fibromyalgia does not discriminate; and that Fibromyalgia sufferers look just like everyone else. At the moment, I am waiting for a copyright license to the sound recording of Johnny Cash’s HURT to use as the background music.
Previous Projects
If you would like your face included, please send me: a picture of you (it can be alone or with some-one), where you live (not specifics), and your age to fibromodem@bigpond.com
I have previously made some amateur videos for Fibromyalgia Awareness and Fibromyalgia Awareness Day. See: Fibromyalgia Awareness - http://youtu.be/1smYHoaVNrw Fibro Fog - http://youtu.be/UkKIy7t0pNQ Together - http://youtu.be/2JzJ-QTqjiQ Start wearing purple for me NOW - http://youtu.be/5s0YTXwBbbc
Who am I? I am NOT affiliated with any organisation (although I am currently investigating starting a charity). I am NOT trying to sell anything. I am trying to spread awareness and information about our condition. My name is Simone. I am single, live alone and I have Fibromyalgia. I was 40 before I even heard about fibromyalgia. Previously, I had worked in hotels, on cruise ships and in casinos. Then I spent 6 years working (in the ‘real’ world) and studying (in ‘academia’) to get my law degree. About halfway through my studies, I had (what I call) a major breakdown. I stopped working – I was broken. No getting out of bed. No getting in the shower. No getting dressed. I was depressed. I had depression. It took about 3 years to swim out of those murky waters (with lots of drugs acting as my life preserver) For some reason the only thing that kept me going was my studies. I was able to ‘practice’ law for one whole month before the debilitating purple wave took over my life – FIBROMYALGIA! I have a Facebook page – Fibromyalgia Awareness 2012 (I’m not permitted to change the name now, as I have nearly 3000 LIKES) - https://www.facebook.com/FMawareness2012 I share my (mis)adventures with Fibromyalgia and any information that I think is important on my blog http://fibromodem.wordpress.com
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From FACEBOOK
From H.O.P.E. Foundation Spreading Fibromyalgia Awareness https://www.facebook.com/FibromyalgiaAwaren ess
Among the many confusing things you have to deal with when learning about fibromyalgia syndrome (FM) is the difference between a disease and a syndrome. It's common for people who don't believe in FM to say that FM is not really a ‘disease.’ This leads some people to believe that they're not ‘real.’ The word SYNDROME has been so misused in the media that it carries a connotation of being made up, silly or overblown. Meanwhile, DISEASE sounds ominous and scary. While it's true that FM is not classified as a disease, that in no way means that it doesn’t exist or is less serious than a disease. It's simply a matter of how well they're understood. So what's the difference? Syndrome Well the definition of syndrome is pretty straight forward:
Syndrome: a collection of signs and symptoms known to frequently appear together but without a known cause.
We're learning more about the various physiological problems associated with FM – such as neurotransmitter dysregulation and immune system irregularities – but researchers have still not uncovered the underlying cause (or causes) of these problems. For that reason, they are syndromes. However, as we gain more knowledge, we're likely getting closer to the discovery that could re-classify them as diseases. For Fibro Awareness items that are a little out there: www.cafepress.com/fibromodem
Disease Defining disease is a little more complicated. Some medical dictionaries define it as a disorder in a system or organ that affects the body's function. That muddies the water, because with FM, we can point to multiple disorders in systems and organs that affect our bodies. Other medical dictionaries offer a clearer distinction:
Disease: a morbid entity characterized usually by at least two of these criteria: 1. Recognized etiologic agent (cause) 2. Identifiable group of signs and symptoms 3. Consistent anatomic alterations
On top of not knowing the cause of FM, signs and symptoms are too variable and often point to numerous possible causes, and researchers have failed to find anatomic alterations that are consistent enough to stand up to scientific scrutiny. Living With a Syndrome It's important to remember that while the term SYNDROME sometimes seems to belittle the illness, it is really just a classification based on what the medical establishment understands about it. When someone throws out that "it's just a syndrome" argument, they should take a close look at what they're really saying. It doesn't mean that your illness is less real or serious than a disease; it means it's less understood. For those of us with this syndrome, it often means our doctors don't know much about it and effective treatments can be hard to find. Some of us would probably be happy to swap for a disease if it meant an easier road to symptom management as well as being taken more seriously. Something that may compound the confusion about the difference between disease and syndrome is that a name containing syndrome may stick even
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Living Well with Fibromyalgia
From FACEBOOK after the illness becomes classified as a disease, especially in popular usage. Case in point: AIDS – acquired immune deficiency syndrome. Scientists figured out what causes it years ago, yet the name persists. So when someone says to you, "Oh, that's just a syndrome," maybe you can remind them that's what the S in AIDS stands for. Then you can add, "AIDS became classified as a disease once scientists figured it out – so it's just a matter of time before FM is a disease, too." The Spoon Theory by Christine Miserandino (www.butyoudontlooksick.com) – slightly edited to fit FM sufferers How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. Grab all the spoons in your cutlery drawer: There you go, you have FM! Huh? you say, with a bouquet of spoons in your hands. The difference between being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. The spoons convey this point. They are something for you to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. As I’m in control of taking away the spoons, then can understand what it feels like to have someone or something else being in control. Count your spoons. When you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many ‘spoons’ you are starting
with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. Want more spoons? No! I’ve wanted more ‘spoons’ for years and haven’t found a way yet to get more, why should you? Now, make sure you remain conscious of how many you have – you can’t drop them because you can NEVER forget that you have FM. List the tasks in your day, including the most simple. Each one will cost her a spoon. Getting ready for work? Nuh-uh (lose a spoon) No! You don’t just get up and get ready for work. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too. Lose another spoon and you haven’t even gotten dressed yet. Showering costs you a spoon. Getting dressed is worth another spoon. Every task needs to be broken down to understand how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick - if my hands hurt buttons are out of the question; if I have a fever I need a sweater to stay warm; if my hair is falling out I need to spend more time to look presentable, and then factor in another 5 minutes for feeling badly that it took you 2 hours to do all this. How many spoons do you have left? You need to choose the rest of your day wisely, since when your ‘spoons’ are all gone, they are gone. Sometimes you can borrow against tomorrow’s ‘spoons’, but just think how hard tomorrow will be with less ‘spoons’. Let’s look at the rest of the day... Skipping lunch will cost you a spoon, as well as standing on a train, or even typing at your computer too long. You are
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From FACEBOOK forced to make choices and think about things differently. Hypothetically, you have to choose not to run errands, so that you can eat dinner tonight. Finally, your work day has ended. Hungry? You have to eat dinner with only had one spoon left. If you cook, you won’t have enough energy to clean the pots. If you go out for dinner, you might be too tired to drive home safely. Think you made it successfully through the day? It’s only 7pm and you don’t have any spoons! Getting it now? Some days are worse than others; some days I have more spoons than most. But I can never make it go away and I can’t forget about it, I always have to think about it. Here’s a spoon that I held in reserve - I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared! It is hard - the hardest thing I have ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. Feeling frustrated, yet? You need to understand that everything that everyone else does so easily is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am stagemanaging a battle. This is the difference between being sick and healthy. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you. Introducing FibroModem Girl – a new addition to Chronic Comic, available daily on
Ode to Can There’s a four lettered word As offensive as any It holds back the few Puts a stop to the many. You can’t climb that mountain You can’t cross the sea You can’t become anything you want to be. He can’t hit a century They can’t find a cure. She can’t think about leaving or searching for more. Because Can’t is a word with a habit of stopping The ebb and the flow of ideas It keeps dropping itself where we know in our hearts it’s not needed And saying “don’t go” when we could have succeeded.
But those four little letters That end with a T They can change in an instant When shortened to three. We can take off the T We can do it today We can move forward not back We can find our own way. We can build we can run We can follow the sun We can push we can pull We can say I’m someone Who refuses to believe That life can’t be better With the removal of one Insignificant letter.
my blog www.fibromodem .wordpress.com
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Research News Risk Free Tai Chi
Fibro – A Greater Impact than Cancer!
Clinical Rheumatology reported, on May 13 2012, that the Oregon Health & Science University’s Fibromyalgia Research Unit held a randomized controlled trial of 8-form Tai chi to gauge any improvement in symptoms and functional mobility in fibromyalgia patients.
Fibromyalgia is disabling & has a greater impact on functional status and well-being than other chronic diseases such as cancer, says a UK public health researchers report. The emotional burden of FM is felt by lay carers as well as sufferers.
Previous researchers have found that 10-form Tai chi yields symptomatic benefit in patients with FM. The purpose of this study was to further investigate earlier findings & add a focus on functional mobility. Participants met in small groups twice weekly for 90 minutes over 12 weeks. Of the 101 randomly assigned subjects, clinically & statistically significant improvements were seen in:
The study aimed to investigate the functional status and well-being of people with ME/CFS and their lay carers, and to compare them with people with other chronic conditions. Since GPs may refer to cases of ME/CFS by different names, cases that had been diagnosed by GPs with any of the following: chronic fatigue syndrome (CFS), ME, post-viral asthenic syndrome (PVAS), fatigue syndrome (FS), fibromyalgia (FMS), post-infectious encephalitis (PIE) and post-viral fatigue syndrome (PVFS), were included in the study. Patients were considered as potential cases if any of the above diagnoses appeared in their individual electronic medical records. As we know, diagnosis of our condition is largely based on clinical history, and exclusion of identifiable causes of chronic fatigue. Characterization of cases and the impact of interventions have been limited due to the diverse clinical nature of the condition and a lack of reliable biomarkers for diagnosis and outcome measures. The well-being of family members and those who care for us are also likely to be affected.
No adverse events were noted.
The functional status and well-being of a well characterised sample of individuals was measured using SF-36, a widely used and wellvalidated instrument, which provides generic (i.e. universally-valued, and not specific to age, disease or condition or treatment) measures of disease impact on physical, physiological, social functioning and roles. Unlike disease specific measures, SF-36 can be adequately used for comparisons between people with a range of different conditions.
Accordingly, the study reported that tai chi appears to be a safe and an acceptable exercise modality that may be useful as adjunctive therapy in the management of FM patients.
The scores for the Physical and Mental Health Component summaries and the scales within each of these domains were considerably and consistently lower in people with ME/CFS, when contrasted with individuals with a range of other chronic diseases. This demonstrates that ME/CFS is not only physically disabling, but also has a significant impact on mental health.
pain severity pain interference sleep, and self-efficacy for control
pain
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Research News The results of the study highlight the disabling nature of ME/CFS. However, the lack of bio-markers and the fluctuating nature and lack of specificity of symptoms makes disease characterisation and disability assessment challenging.
Time to Collaborate with the FibroCollaborative Working Group
Quality of life is inversely related to distress, disability and loss of function, and is associated with the ability of individuals to remain active and perform roles in society. A major goal of people with chronic diseases is to achieve effectiveness in life and to preserve function and wellbeing. However, people with ME/CFS are (generally) failing to achieve these goals, and their carers’ emotional wellbeing is also being affected. Recognition of the level of disability faced by us is essential for planning support services that adequately meet our needs.
Although aimed at GPs. the guide is written clearly and succinctly enough to help us inform ourselves as it educates and guides our doctors.
Four fibromyalgia specialists – Lesley M Arnold, Daniel J Clauw, L Jean Dunegan, and Dennis C Turk – have developed an educational framework that primary care doctors can use as a guide to best practices in fibromyalgia case management. Yippee! The guide – A Framework for Fibromyalgia Management for Primary Care Providers - was published in the May 2012 issue of Mayo Clinic Proceedings.
Special features include: 1. A flow chart of key FM case management tasks and objectives. 2. A table of basic pharmaceutical therapy guidance – e.g., dosing considerations and possible outcomes/implications for each FDAapproved drug option mentioned. 3. Similar information regarding non-drug therapies. 4. Links to educational resources that are helpful to inform patients; 5. And, for physicians, links to 45 footnoted sources in the medical literature that provide ‘evidence-based’ background for many aspects of fibromyalgia and FM patient care discussed in the guide. The new Framework for Fibromyalgia Management for Primary Care Providers is part of the FibroCollaborative Working Group’s 2010 Roadmap for Change – an initiative sponsored by Pfizer and supported by representatives of more than 20 fibromyalgia medical/professional and advocacy organisations across the US. CoQ10 – Not Just For Skin!
ANNOUNCEMENT
A recent study (published 19 April 2012) hat suggests that oxidative stress is associated to clinical symptoms in FM (particularly headaches). The researchers examined oxidative stress (the condition in which antioxidant levels are lower than normal) and bioenergetic status in blood mononuclear cells (BMCs) and its association to headache symptoms in FM patients. The effects of CoQ10 supplementation on biochemical markers and clinical improvement were also evaluated. Decreased CoQ10, catalase (an enzyme that catalyzes the reduction of hydrogen peroxide) and ATP (not sure what that one is) levels in BMCs from FM patients as compared to normal control were found. From my limited reading and understanding, everybody has these things (called peroxides and free radicals) running around in their
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Living Well with Fibromyalgia
blood. ‘Normals’ have sufficient ability to readily detoxify the reactive intermediates or to repair the resulting damage. I’m imagining the old ATARI Space Invaders game (am I showing my age?) where ‘normals’ shoot at the free radicals coming closer to you. Well, using that image, FM sufferers don’t have enough ammunition to fight off the space invaders (and No, I don’t know why). Oral CoQ10 supplementation restored biochemical parameters and induced a significant improvement in clinical and headache symptoms (that is: the FM patients were able to stop the peroxides and free radical from invading!). HOWEVER the researchers in this study noted that, although the results of this study suggest CoQ10 treatment showed a remarkable improvement in clinical symptoms and headache in FM, CoQ10 supplementation should be examined further in a larger placebo controlled trial, to confirm this observation, as a possible treatment for FM. My cure for Fibro Fog – clothes pin everything to a line across my hallway so it hits me in the head as I leave the house. Impossible to leave anything at home, then!
Men Get Fibro, Too! Fibromyalgia can take years to diagnose—three to five years on average—but, if you’re a man, it can take even longer! It is common knowledge (at least, with us) that FM is diagnosed in 2% to 4% of the population but is about nine times more common in women than men. The lower numbers mean that doctors are less likely to consider the diagnosis in the first place, and, what’s more, fibromyalgia may look slightly different in men than women. The condition may be milder in men, who may also have fewer symptoms. Some research has suggested that men tend to have less frequent flare-ups of their symptoms, which also are likely to last for shorter periods of time. However, one Israeli study in 2000 found that men with fibromyalgia actually had more severe symptoms, decreased physical function, and lower quality of life than women the same age with fibromyalgia. Part of the reason men are less likely to be diagnosed may be due to deeply ingrained social norms that teach men to hide their feelings, making them less likely to seek help for something that could be viewed as a weakness, like body pain. Doctors need to question their male patients about pain to get their patients to talk, because men are sometimes reluctant to talk about it. Unfortunately, as we know, FM also still has a serious credibility problem. Even if men are willing to talk, not all doctors believe what they are hearing. In a 2007 survey, more than 25% of the 2,000 fibromyalgia patients questioned reported that their doctors did not view fibromyalgia as a ‘very legitimate’ disorder. Fortunately, at least for patients in the US, the Food and Drug Administration’s approval of three drugs—Cymbalta, Lyrica, and Savella (Lyrica has not been approved by the PBS in Australia – I have no idea about other countries) —for FM has helped to bring the condition out of the closet, says Patrick Wood, MD, a member of the medical advisory board of the National Fibromyalgia Association.
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Living Well with Fibromyalgia
If you would like to tell your story, please send your story, details, and a photo (or more) to fibromodem@bigpond.com If you have any suggestions or tips for other sufferers, please email me at fibromodem@bigpond.com If you have any feedback – good or bad (but this is my first time at doing this!) please email me at fibromodem@bigpond.com If you have something to sell, I will NOT be printing an article. You can buy advertising space by contacting me at fibromodem@bigpond.com
"With the release of recent medications, there’s been a greater orientation to the reality of this disorder and emphasis to make it something that’s treated as a legitimate condition." But in addition to disbelief and social norms, there are also some physical variations that make fibromyalgia different in men. The current guidelines for diagnosing fibromyalgia include feeling pain at 11 or more of 18 common tender points. But because the average woman is more sensitive to pain than the average man, women score higher on this diagnostic test and, therefore, meet the criteria for fibromyalgia more frequently than men, explains Daniel Clauw, MD, the director of the Chronic Pain and Fatigue Research Centre at the University of Michigan, in Ann Arbor. Dr Clauw supports the burgeoning movement to eliminate the tender points test from fibromyalgia diagnoses because of this bias toward women. "Using [tender points] criteria, fibromyalgia is about 95% female," he says. "That will probably go down to about 65% because chronic, widespread pain is only about 1.5 times greater in women than in men." Another deviation may be chemical imbalances in the brain. Dr Wood suggests hormones may play a role. "With the dopamine system, in particular, there are gender differences as to how the brain responds to situations," he says, pointing particularly to stress. "Estrogen is very excitatory to the central nervous system, [while] progesterone is very calming." Greater attention to hormonal imbalances may lead to gender-specific treatment in the future, he adds. However Dr Clauw is not convinced that estrogen is the culprit. "Pregnancy and menopause [cause great changes in estrogen] and neither of those are associated with changes in pain in women," he says. "We simply don’t know why women have more pain than men." Until the condition is more deeply understood, managing the pain is any patient’s best plan of attack. Despite the gender imbalance, advice for thriving with fibromyalgia is gender neutral. Both men and women can benefit from the same advice. Both men and women deserve to have their pain treated.
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Living Well with Fibromyalgia please email me at fibromodem@bigpond.com & let me add you to this new mailing list. I will never sell your details (I wouldn’t know how to) or send you crap!
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