FLTC Group Newsletter October 2013

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FROME SUPPORT GROUP FOR LONG-TERM HEALTH CONDITIONS

Do you have a long-term condition (for example Fibromyalgia, Rheumatoid Arthritis, Chronic Fatigue Syndrome, Chronic Pain Syndrome, MS or ME)? We are people with long-term conditions who have set up a Peer Support Group for fun, support and understanding, and shared experiences. Come and join us at our friendly Peer Support Group. We meet at the Frome Canoe Club (next to the Cheese and Grain) from 1 to 3pm on the first Monday of the month. If you are not able to make it on the day but you would like to know more email Jenny at j.hartnoll@nhs.net or call 07773-671397

Canoe Club Walk (John Gunn)

The next 3 meetings are on: Monday 4th Nov 2013 Monday 2nd Dec 2013 Monday 6th Jan 2014

FLTC Group Newsletter October 2013

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In this Issue This issue focuses on Fatigue – the theme from October’s meeting. Fatigue provides the backdrop to many of the long-term conditions covered by the group, which led to an interesting discussion with various recommendations – the consensus from the group was to avoid over commitment and plan your activities. The newsletter starts with a summary of the discussion with an example of when things go wrong. Suggestions included prioritizing activities, time-limiting their execution and changing what you do or how you do it. Next there is information about pacing – a popular method for managing fatigue. This lists the high-energy activities that need managing most, and looks at the problems with this method. Fatigue has many causes but they operate through a common mechanism involving the breakdown of tryptophan into other molecules. Although there is little evidence that tryptophan can be restored by diet, it is particularly plentiful in chocolate J. Eskimos and British skiers have many names for snow. Similarly, there are at least five (polite and distinct) names for fatigue. Which category does yours fall into? Finally, meditation has been shown to be beneficial in reducing fatigue, although most methods are difficult to accommodate in a busy and stressful schedule. A quick and easy method is described which should be performed every day at the desk, in a comfy chair or lying in bed. It can also be used as a quick boost throughout the day.

Next Meeting Each month we will be discussing a symptom or issue (chosen by the group) that arises from our long-term conditions. The theme for November is Relaxation, when we will have a guest from the Red Cross who will demonstrate some useful techniques. Do you have an effective method that you can share with the group? Also, don’t forget to send contributions for the newsletter to: newsletter@gunnsfromfrome.co.uk

(Follow FM Girl’s adventures at fibromodem.com)

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Topic of the Month - Fatigue Fatigue |fəәˈtiːg| Noun – extreme tiredness resulting from mental or physical exertion or illness For many members of the group, the impact of illness-driven fatigue was made worst by the inability to do all that they once did. As we learn to cope and say ‘no’, there is the frequent response from others “but you used to do that”. So we push ourselves harder, which creates stress, anxiety, and … more fatigue. Some of the pressure is self-inflicted. We know that we used to do more so we don’t listen to what our bodies are telling us, and carry on until we crash. One member told the story of baking a cake for charity. While she had out all the tins, flour, etcetera, she decided to make a cake for the family’s tea. And then there were the biscuits, and the washing-up. The result was inevitable. Coping with fatigue requires forward planning and discipline. We must remember that there is we can do, so focus on what’s important. We can use various tricks to make our energies go further. If you find lists helpful, write everything down and tackle them one at a time (even if it’s only one activity per day). Then be ruthless and cross stuff off the list. Use a timer to stop doing too much at once – don’t go to your limit. Ask yourself if you need to complete the task. Maybe we should stop thinking of coping strategies but instead think in terms of adjustment. Experiment with changing things. Would a chair in the garden encourage a break from the weeding? Would an extra light lessen the strain of reading? One of our members provided a good final thought:

Don’t waste emotional energy on things you can’t do or have lost; concentrate on what you can do and what you have.

(Follow FM Girl’s adventures and blogs at fibromodem.com)

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Pacing and Energy Envelopes A handout from the Mineral Hospital’s physio clinic titled ‘Pacing Advice: Goal setting to manage fatigue and maintain fitness’ defines categories of activities from high energy to sleep. This can be used to avoid overload by working within the individual’s ‘energy envelope’. Nothing trumps pacing. If you pace you’ll probably feel better, and if you don’t you know you’re going to feel worse. So what stops us? • Work – we need the money • Dogs and Children – they need walking • Boredom – a challenging book beats OK mag • Protestant ethics – we should work all we can • Restlessness – see wired fatigue below • Lack of belief that it will work The blog at www.cortjohnson.org is inviting comments as to why people stop or push the envelope till they crash – update coming soon. But does it work? One study of 91 people with ME/CFS found they split into three groups. 1. Envelope Pushers (22%) who defy the signals from their bodies and appear to be really hurting. 2. The Adjusters (38%) who reaped the benefits of staying within their energy envelope. Doing less conserved their energy and achieved more. 3. The Out of Luck (40%) who tried to pace and were only mildly overextended. However, they were still very limited in what they could do. For the first two groups, pacing theory explains what’s happening, so try it – you may be lucky. For the third group, it may not give the desired benefits but ignoring it will make matters worse.

HIGH ENERGY: Enjoying TV, film, book, music or theatre where concentration is required to follow content, storyline, etc. Work – either paid or unpaid Writing formal letters or household admin Using a computer Driving, or navigating for a driver Walking and cycling Leisure activities that require physical effort or concentration (e.g. gardening, hobbies, cooking or sports) Washing your hair, showering and bathing Meeting a GROUP of friends Going somewhere unfamiliar LOW ENERGY: Enjoying TV, film, book, music or theatre that does not need much focused attention or in short bursts, like a magazine. Leisure activities not requiring much physical effort or concentration (e.g. easy crafts, very light gardening or low level cooking like heating up soup) Chatting with ONE friend Simple trip to somewhere familiar Resting, not asleep, and getting up for the toilet or to get a drink or to resettle yourself REST/RELAXATION: Listening to ‘chill-out’ music Using relaxation techniques Meditation Resting, not asleep, but not getting up SLEEP: UNINTERRUPTED sleep

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The Metabolic Path to Fatigue Medical researchers have recently started to experiment with a new measuring instrument, giving the hope of making the invisible visible. Infrared spectrometers are more familiar in crime lab settings, but they are now being used to analyze metabolites within a bloodspot, paving the way for cheap diagnostic tests. Researchers at the Ohio State University tested blood samples from fibromyalgia, rheumatoid arthritis and osteoarthritis patients for their chemical composition These spectra reveal that tryptophan and its breakdown metabolites (TRYCATs) are significantly outside their normal range, which in turn demonstrates a dysfunction of the immune system processes. In addition to the FM, RA & OA conditions being tested, the mix of molecules detected has previously been linked with depression, cancer, Epstein-Barr virus, ME/CFS, multiple sclerosis, orthostatic intolerance, Parkinson’s, POTS, and Sjögren’s. The impact on fatigue begins with the low tryptophan levels causing low serotonin and melatonin levels. Low serotonin is associated with chronic fatigue, poor sleep, hot flushes, muscle cramps, headaches, stomach issues, etc. Low melatonin levels affect circadian rhythms and adversely impact mitochondrial DNA, which in turn reduces the body’s ability to produce energy on demand at the cellular level. Some researchers believe TRYCAT production “triggers depression and anxiety, increases oxidative stress, whacks the mitochondria, and to top it off, fosters neuroexciticity and neurotoxicity and potentially neurodegeneration”. Some of these molecules are capable of crossing the blood-brain barrier. One of the TRYCATs, quinolinic acid, was found at higher levels in the fibro samples. Interestingly, this chemical causes inflammation of the fibrous sheath enclosing the muscles. The immune cycle normally starts as a response to pathogens (e.g. viruses and parasites) triggering inflammatory products (e.g. interferon) to stimulate the enzymes that breaks down tryptophan to release kynurenine, which in turn is converted into neuro-protective or neurotoxin compounds. Inflammation driven fatigue can also start from the body’s reaction to other stimuli, e.g. weather, food, and much else. Similarly, the resulting molecules can affect other biological and neurological processes beyond the pathogen fighting forces. Want to know more? http://www.cortjohnson.org/blog/2013/08/26/researchers-assert-inexpensive-biomarker-fibromyalgia-found-immune-system-implicated/ John Gunn

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What Do You Mean ‘You’re Fatigued’? When a team at DePaul University in Chicago wanted to study fatigue symptoms in ME/CFS patients, they first classified fatigue into five types: Post-Exertional fatigue was defined as abnormal exhaustion following a bout of physical activity (e.g., "Physically drained after mild activity"). Wired fatigue was considered an over stimulation of the mind or body without the available energy to act out the mental or physiological excited state (e.g., "Body feels over-stimulated when very tired"). Brain Fog fatigue constituted the exhaustion or interruption related to everyday cognitive processes, such as memory recall, speech, or information processing (e.g., "Thinking is hard work and muddy"). Energy fatigue was defined as a lack of energy resources needed for daily functioning (e.g., "Do not have energy to do anything"). Flu-Like fatigue was the tiredness that is associated with physical symptoms commonly seen in cases of influenza (e.g., “Flu-like, such as sinus pain, etc."). So what do you mean ‘You’re Fatigued’?

Every Breath You Take The health benefits of regular meditation have been shown to reduce fatigue, lower levels of stress hormones, and increase myelination and axon density in the area of the brain associated with autonomic functions such as heart rate and blood pressure. (See http://www.prohealth.com/library/showArticle.cfm?libid=17043). These changes were observed after one month of integrative body-mind training (IBMT) for 20 minutes per day. This form is also known as mindfulness meditation. The trials were conducted with a group of college students who were given the time and resources to stay with the programme. So what do you do if you don’t have access to a trainer nor able to commit to at least 20 minutes each day?

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One option is a 15-breath cycle based on ‘bone breathing’ meditation. This won’t give you the rapid benefits seen in the study, but the benefits are worthwhile and the commitment is modest. This should be performed EVERY day, especially if there are lots of stresses in your life. It is also a good start for going to sleep at night. The first requirement for any meditation is a balanced and supportive posture. The aim is to minimize muscle strain particularly in your arms and neck. You can meditate standing up, moving, in the lotus position, sitting (upright or reclining), or lying down. Most importantly, be comfortable and relaxed. The second requirement is relaxed breathing, ideally using deep slow belly breaths. Belly breathing uses the diaphragm muscle to slowly draw air into the lungs before allowing it gently to expel. This contrasts with much shallower chest breathing where the intercostal muscles pump the air in and out. If possible, breathe in through your nose and out through your mouth. The third requirement is being aware of thoughts and body sensations, without active thinking. This is often taught through focusing on each breath or chanting a sound. With bone breathing, the focus is the visualization of the body as connected hollow and flat bones. On the in-breath, light and energy are drawn through the hollow bones. On the out-breath impurities are expelled through the reverse route. Chinese medicine holds that healthy marrow is the most important aspect of well-being. The 15-breath cycle commences with two slow and deep breaths while visualizing the air entering and leaving. On the third breath, visualize the air entering through holes in the tips of the right toes and up into the leg. Concentrate as the light is drawn in, and follow the breath along the limb to the hip. Breathe out the impurities, and repeat for the left leg. With the next in-breath, follow the light through the right leg to the centre of the pelvis, and then expel through the left leg. Repeat left to right. Breaths 7-10 repeat this pattern with the fingers, double bones, long bones and flat bones, i.e. right arm in & out; left arm in & out; in-breath through right arm, across the shoulder blades & out the left; finally, in the left arm, across & out the right. The next two breaths draw the energy through the tailbone, up the spine to the tip of the head and expel impurities back down and out (repeat). For the next two, the breath enters the spine and travels through the ribs to the breastbone, then relax the ribs as the breath returns to the spine (repeat). The fifteenth, and last breath, focuses on slow deep inhalation and exhalation. At the end, slowly return to what you were doing with the thought that your muscles must now move gently to take care of your invigorated skeleton.