FIBROMYALGIA SUPPORT GROUP (MEDWAY)



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16 Barberry Avenue, Chatham Kent ME5 9TE

Telephone: 01634 865925 E-mail: fibromedway@yahoo.co.uk

Website: fibrosupportmedway.btck.co.uk

October 2011 ISSUE 55

Next Meeting: Thursday 24th November, at St Stephen’s Church Hall, Maidstone Road,

Chatham ME4 6JE. 1.00pm to 3.00pm

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MEETING DATES FOR 2011

Thursday 24th November – A talk about the Vicious Cycle of Fibromyalgia and Emotional Impact. Also a talk about an NHS Exercise Group specifically for those with Fibromyalgia.

MEETING DATES FOR 2012

Thursday 26th January

Thursday 22nd March

Thursday 24th May

Thursday 26th July

Thursday 27th September

Thursday 22nd November

All at the above address and time.

SEPTEMBER MEETING

Our speaker at the September meeting was Wanda Wright, a Homeopath. Her talk on Homeopathy was informative. There will be a report in the next newsletter

AMAZING FUNDRAISING & AWARENESS EVENT

See pages 11 and 12 for details of Tracey’s fantastic event.

COLLECTION BOX FUNDRAISING

Our thanks go to Lisa who very kindly put one of our collecting boxes in her shop for customers to put their few pence change in.

Lisa told us that often when she has given a small amount of change in the past, people have asked if she has a charity collection box to put the change in. So she asked for one of our boxes and presented us with the full box amounting to £11.49.

Lisa has now taken another box to fill. Our thanks go to her, and, of course, her generous customers.

TELEPHONE ENQUIRIES

Please note that telephone calls to the group should be made on weekdays between 10am and 5pm. For those who are at work and unable to make telephone calls during those times, it would be appreciated if calls could be made during weekday evenings before 7.00pm.

SUPPORTERS’ HELPLINE

Ron Robson is available on 01634 865925 to take calls from supporters of those with Fibromyalgia, who just need to talk about their concerns.

FUNDING UPDATE

The balance in our Bank Account at the end of July 2011, was £3781.98.

Expenditure since then has been, £20 for Plugmates, £284.86 for 024, £10.77 for Sundries, £812 for postage, £123.97 for Stationery, £21 for CDs, and £159.43 for Photocopying.

This leaves a total of £2349.95.

At the September meeting and during the past two months, we raised, £29 on the raffle, £21 for pens, £9.93 for refreshments, £38 in donations, £60 for sale of 024 Fibromyalgia, £2 for plugmates, £4 for CDs, £1 for Notepads, £11.49 from Lisa’s collection box, £766.21 from Tracey’s awareness event, £6 for Car Stickers and £259.06 for Gift Aid.

This gives a total of £1207.69 to be deposited in our bank account.

This gives us total of funds of £3557.64.

DONATIONS

I would like to acknowledge all donations sent in during the last two months. All donations help ensure the service remains at the present level. I am not able to respond to each one personally but please accept our thanks to you all. Thanks also for the lovely letters I receive. They are much appreciated

COLIN WALDOCK PHYSIOTHERAPY AND ACUPUNCTURE CLINIC

Thorndike Centre Longley Road Rochester ME1 2TH

Tel:07505805175

E-mail: colinwaldock22@

Colin Waldock is a highly experienced Physiotherapist educated to a Master’s Degree level who is happy to provide consultation and treatment on a range of musculoskeletal disorders (including Fibromyalgia) offering a holistic approach to treatment with an emphasis on the use of acupuncture and acupressure.

Advice and assistance with tailored rehabilitation exercises is also offered as an integral part of condition management. In addition, Colin is a qualified Non-Medical Prescriber, and in liaison with your GP, can prescribe suitable medication to support your recovery.

Colin has treated patients with Fibromyalgia and has a sound knowledge of the condition.

Fees: £35 per 30 minute session

colinwaldock.co.uk

LIVING WITH CHRONIC PAIN CD

The Living with Chronic Pain CD that we have sold a large number of during the last eight years, is now available to download (free) or listen to (free) online at .uk I do now have some for sale for £3 each for those who wish to have one.

024 PRICE CHANGE

Due, once again, to the exchange rate, and also the fact that this time we have been charged Import VAT, we can no longer offer the 024 at £8.

If you are able to pick one up at meetings, the cost will be £10, but with postage it will be £11 each. Please make cheques payable to Fibromyalgia Support Group (Medway)

NORTH KENT GROUP

Contact: Philomena (Phyl): 0844 887 2348

or e-mail: fibromyalgia.nkent@yahoo.co.uk

MAIDSTONE GROUP MEETINGS

Contact: Heather Hammond: 0845 458 3762

or heather.hammond@mypostoffice.co.uk

SITTINGBOURNE & SHEPPEY SUPPORT GROUP MEETINGS

Contact Maria: 0845 458 3780

Email: sandsfibrosupport@

"CURE FM" FEATURED IN TIMES SQUARE DIGITAL SCREEN

From May 17 to July 5, visitors to Times Square in New York City were treated to the "We Can't Do It Alone" clip on the CBS digital billboard, one of the city's largest video screens and seen by millions.

The billboard, which contained the website address, and name and logo of the National Fibromyalgia & Chronic Pain Association, aimed to raise awareness of Fibromyalgia and chronic pain. It was also the first known time that "Fibromyalgia" was featured on a billboard on Times Square.

"SLEEP & FIBROMYALGIA" WEBINAR WITH DR. VICTOR ROSENFELD NOW ONLINE

Sleep expert and researcher Dr. Victor Rosenfeld was the first "ask the Expert" guest on Tuesday, June 28. Dr. Rosenfeld spoke on "Sleep and Fibromyalgia" and answered questions from the participants ranging from causes of sleep disorders relating to Fibromyalgia to treatment options during the 45-minute webinar.

The webinar on "Sleep & Fibromyalgia" may be viewed on the NFMCPA's YouTube channel (details below). Future webinar topics include yoga, nutrition, meditation, juvenile fibromyalgia, and genetics.



The above two items are from the National Fibromyalgia & Chronic Pain Association of America’s Newsletter

GENETICS – FIBROMYALGIA SUSPECT

Dr. Pellegrino, a leading Fibromyalgia specialist and author who has had FM himself since childhood, has observed, in over 20 years experience treating patients at the Ohio Pain & Rehab Specialists Centre, familial Fibromyalgia patterns and permutations, such as ‘the aging threshold’.

He says that all involved in treating Fibromyalgia appreciate how complicated the condition is, and that there is more than one way to get Fibromyalgia. His list of probable causes, based on his experience and understanding of current literature, is as follows:

1. Genetics

2. Trauma

3. Connective Tissue Disease

4. Infection

5. Catastrophic Stresses

6. Chemical exposure

Dr Pellegrino refers to several studies on the hereditary aspects of Fibromyalgia that have been published, such as one that he and Dr George Waylonis published in 1989, and another that Dr. Dan Buskila from Israel performed looking at 60 children of 21 mothers with Fibromyalgia. Other studies, such as those performed by Dr Muhammad Yunis, have supported an inherited pattern to Fibromyalgia

Although Dr. Pellegrino believes that genetics are a factor, he also thinks there might be additional factors causing the “delayed” development of Fibromyalgia; factors that he refers to as the “aging threshold”. This is an interesting concept and more can be read in Dr Pellegrino’s book “Fibromyalgia Up Close and Personal”.

In his book, Dr Pellegrino also explains who is at risk of genetically developing Fibromyalgia, how genetics play a role in pain sensitivity, and the probable FM causes such as trauma, connective tissue disease, infection, catastrophic stresses and chemical exposure.

An excerpt from this book, adding to the details above, have been printed by ProHealth and can be viewed on their website

DOES FIBROMYALGIA EXIST?

Also excerpted by Prohealth is another interesting piece from Dr Pellegrino’s book. In this, he states that some doctors say that Fibromyalgia doesn’t exist, and that trauma couldn’t be the cause even if it did exist. Yet, Dr Pellegrino says, those same Drs do not say that migraine headaches, depression or irritable bowel syndrome do not exist. He says that less is known about these conditions than is known about Fibromyalgia, so he doesn’t understand why these same Drs are not voicing an opinion about them. Why, he says, are they so reluctant to believe in Fibromyalgia?

UPDATE OF THE ALPHA-STIM

You may remember that, in February, I trialled an Alpha Stim. I decided to do this after a presentation by Linda Hornchurch at our November meeting. I had been going through a very difficult time, getting very little sleep and becoming less mobile with a lot more pain. In the April newsletter I wrote about the four week trial and the fact that I purchased an Alpha Stim at the end of the trial. I thought it might be of interest to give an update on my progress with it at this point.

It is now, at the time of writing, five months since I first started to use the Alpha Stim. I explained when I previously wrote about it that I am the world’s worst sceptic, and although I was convinced of the benefit that it gave me when I decided to make the purchase, I was still not convinced that the benefits would be on-going. However, being content with the help I needed at that time being met, even if it was to be short-lived, it seemed worth the money (well, at least, Ron did. I’m the one who needs to be able to see into the future before I make a purchase). I use the ear clips every day for just one hour, as prescribed, and every day I am still waiting for that moment when it will stop being beneficial. So far it hasn’t come.

There will be some who will say it is all in the mind, but even with my scepticism, I don’t believe that. I have to say, there have been odd nights when I’ve had difficulty getting to sleep but I would say, on average, these would be about once a month. My mind appears to be a lot clearer – not so much Fibrofog. Not perfect, but definitely better. Also, I am more relaxed and less tense. Long may it last!

If there is anyone in the Group who also has an Alpha-Stim, and who would like to write about their experience of it, we would be pleased to be able to put this in the newsletter.

To contact Linda for advice call 077 191 800 98. Her clinic is near junction 2 on M40. Linda Horncastle is a State-registered Occupational Therapist and Co-ordinator of the South Bucks Fibromyalgia Support Group

For more information look at themicrocurrentsite.co.uk

 

The Alpha Stim is cleared by the FDA in America and the technology is showing promise with soldiers returning home from war with lots of further information at Alpha-.

Margaret

Editor’s Note: Please note that this write up of the trial of Alpha Stim is of a personal experience, and does not constitute a recommendation by the Fibromyalgia Support Group (Medway). Any new treatments should be discussed with your Dr.

INTRODUCTION TO DIET AND FIBROMYALGIA

By Amy White and Zara Cuccu – Dieticians from Medway Maritime Hospital

Fibromyalgia is often associated with a tendency to gain weight, irritable bowel syndrome, pain, fatigue, sleep disorder and chronic headaches. These can affect your nutritional status and health. Therefore following a healthy, balanced diet is vital.

Healthy eating

Healthy eating is the basis for general health. This includes:

• Eat three regular meals a day and start the day with breakfast.

• Base your meals on starchy foods (bread, potatoes, pasta, rice, cereals). This should make up a third of the food you eat. Choose high fibre varieties such as wholegrain as these digest more slowly and help you to feel fuller for longer.

• Aim for five portions of fruit and vegetables a day. These provide a wide variety of vitamins and minerals. Choose tinned, frozen dried or juiced varieties. One portion is about 80g or 1 medium fruit (e.g. apple), 2 small fruit (e.g. plums), half a large fruit (e.g. grapefruit), 3 tablespoons of vegetables, 1 tablespoon of dried fruit and 150ml glass of fruit juice (maximum of one a day).

• Have a moderate amount of low fat protein, milk and dairy products. Try to reduce the amount of fat you eat by choosing lower fat options and lower fat cooking methods. Such as, grill, steam and oven bake instead of frying.

• Aim for two portions of fish a week (a portion is 150g). One of these should be oily (trout, salmon, mackerel, herring). Oily fish contain omega 3 fatty acids which help prevent heart disease.

• Reduce the amount of saturated fat. Having too much saturated fat can increase the amount of cholesterol in your blood. Saturated fat is found in pastries, hard cheeses, cakes, biscuits and palm oil.

• Reduce the amount of sugar and sugar containing foods.

• Use less salt. Aim for no more than 6g a day. Having too much salt can raise your blood pressure. Flavour food with herbs and spices instead of salt.

• Have plenty to drink, aim for 1.5 – 2 litres a day (around 8 glasses). Fluid includes; tea, coffee and water. Avoid drinks high in sugar.

• Alcohol in moderation. Alcohol is high in energy, so reducing your intake will help you to lose weight. No more than two units a day for women and three units a day for a man. One unit is half a pint of lager, one pub measure of spirit or 100ml of wine.

• It is important to check food labels to help you make a healthy choice. The following table shows what to look for on food labels to find out if that food is high or low in salt, sugar and fat.

|Food labels |High (g per 100g) |Low(g per 100g) |

|Salt |1.5 |0.3 |

|Sodium |0.6 |0.1 |

|Sugar |15 |5 |

|Fat |20 |3 |

|Saturated fat |5 |1.5 |

Nutrition and weight reduction in fibromyalgia

Being overweight or obese increases an individual’s risk of health problems including; heart disease and type 2 diabetes. Being overweight or obese develops gradually by taking in more energy from food and drink than what is used up in everyday activity and exercise.

Studies have shown that people with fibromyalgia are more likely to be overweight or obese. This has been linked to impaired activity, sleep disturbance and depression. Certain medications can also contribute to weight gain.

Am I overweight or obese?

You can assess if you are overweight or obese by calculating your Body Mass Index (BMI). The BMI tells you how healthy your weight is for your height.

Healthy - 18.5 and 24.9

Overweight - 25 and 29.9

Obese - Over 30

You can calculate your BMI. Divide your weight in kilograms by your height in meters. Divide this answer by your height in meters again. The final number is your BMI.

Waist measurement

Waist measurement can also help you to assess your health risk. Measure your waist; find the mid-point between the bottom of your ribs and the top of your hips. Use a tape measure around this mid-point.

For a woman, your health is at risk if the measurement is more than 32 inches (80cm). Your risk is much greater if the measurement is more than 35 inches (88cm).

For a man, your health is at risk if the measurement is more than 37 inches (94cm). Your risk is much greater if the measurement is more than 40 inches (102cm).

Losing weight

To lose weight you need to take in less energy from foods and drinks than you use in activity and exercise.

An ideal weight loss is 1-2 lbs or 0.5-1 kg a week. Monitor and record your progress. Set your self weekly goals. Record your weight and waist measurement weekly to track your progress.

Small changes to reduce your energy intake and increase activity will help you lose weight.

Plan your meals to help you lose weight

Plan your meals ahead to successfully lose weight. Eat sitting at a table, taking your time over meals at planned times in the day. Shop with a shopping list and avoid shopping when hungry.

Over time portion sizes have increased. Use a smaller plate to make smaller portions of food appear bigger.

Lower the total amount of energy on your plate to lower your energy intake and help you lose weight. Butter, oils, mayonnaise, cheesy and creamy sauces increase the energy content of meals so avoid these.

Aim for a quarter of your plate to be high fibre wholegrain starchy foods or pulses. Aim for a quarter of your plate to be lean meat, fish or poultry or low fat dairy foods. Drain, trim the fat and take skin off of poultry and meats to reduce fat. Cover half of your plate with vegetables. Aim to have two different types of vegetable with every meal. Vegetables are lower in energy and help to fill you up.

• Fill sandwiches with salad, pepper, cucumber, beetroot or tomato.

• Add vegetables to pasta sauces and soups.

• Add fruit to breakfast cereal.

• Add pulses in place of some of the meat in stews and casseroles.

If you are using a pre-prepared meal, choose a dish with less than 300 calories and ensure the meal is balanced by adding starchy food (bread, potato, pasta, rice) and plenty of vegetables and salad.

Irritable Bowel Syndrome (IBS)

Irritable Bowel Syndrome (IBS) is a common condition affecting the digestive system. It is thought that 10-20% of the population suffer from IBS at some point, and it is twice as common in women as in men. IBS is thought to be more prevalent in people suffering from fibromyalgia than the general population.

IBS symptoms vary from one person to another, but the most common symptoms are:

• Wind and/or bloating

• Diarrhoea or constipation or both

• Passing mucus

• Lower abdominal pain and cramping, often relieved on opening of the bowels

• A feeling of urgency

• Feeling the need to open the bowels, even after just going to the toilet

• Feeling that your symptoms are worse after eating

IBS isn’t a dangerous condition and once diagnosed there is no evidence to suggest individuals are at an increased risk of developing other bowel conditions, for example someone with IBS is not at increased risk compared to the general population to develop bowel cancer. However certain ‘red flag’ symptoms including anaemia, weight loss, rectal bleeding, a family history of ovarian or bowel cancer, over 60 years of age or a change in bowel habit to looser and/or more frequent stools for more than 6 weeks suggest another medical cause and therefore need further tests and a doctor consultation.

The exact cause of IBS is unknown, but most experts agree that it is caused by a disruption in the normal process of digestion. This can be due to:

• A change in the body's ability to move food through the digestive system

• Becoming more sensitive to pain from the gut

• Psychological factors

IBS symptoms can often be reduced by dietary and lifestyle changes. It is important to:

✓ Have regular meals

✓ Take time when eating meals

✓ Sit down to eat and chew food thoroughly

✓ Make time to relax

✓ Take regular exercise

However beneficial dietary changes vary from person to person and what symptoms are predominant. It is useful to keep a food and symptom diary, but remember that any symptoms may be caused from food eaten the previous day, not only what you have just eaten. Also it is important to give time to allow the bowels to adjust to any dietary changes made.

For symptoms of wind and/or bloating:

• Limit fruit to 3 portions/day

• Try reducing your intake of resistant starches.

• Increasing your intake of oats and linseeds may also help with symptoms of wind and/or bloating

• Pro-biotics may help with wind and/ or bloating

For symptoms of diarrhoea:

• Limit intake of fizzy drinks

• Limit intake of caffeinated drinks e.g. tea, coffee to 3 cups/day

• Reduce alcohol intake

• Avoid sugar-free products and products containing sorbitol

• Diarrhoea may also be caused by a high intake of fatty foods e.g. crisps, cakes, burgers, chips etc.

• Pro-biotics may help with diarrhoea

• Limit intake of insoluble fibre e.g. wholegrain breads, cereals, nuts and seeds

• Avoid skin, pips and pith from fruit and vegetables

• Limit fruit to 3 portions/day

• Ensure a good fluid intake to replace the fluid lost- at least 8 cups/day

For symptoms of constipation:

• Dietary fibre may improve constipation but can also increase symptoms of wind, bloating and diarrhoea, therefore should only be increased slowly and as tolerated

• If constipation is the only symptom try increasing wholegrains and fruits and vegetables introducing no more than 1 portion over a 2 day period.

• Oats and golden linseeds can help with constipation

• Ensure a good fluid intake- at least 8 cups/day

• Pro-biotics may help with constipation

Resistant starches

These are foods not completely digested by the body and enter the bowel where they ferment and produce gas. Resistant starches include:

• Part-baked and reheated breads

• Dried pasta

• Ready meals containing potatoes or pasta

• Pulses, wholegrains, sweetcorn, green bananas

• Undercooked or reheated potato products e.g. chips

• Manufactured products e.g. biscuits, cakes

Golden Linseeds

These can be added to foods such as soup, breakfast cereals and yoghurts. And can be taken up to 1 tablespoon per day

Pro-biotics

If you decide to try pro-biotic supplements, yoghurts or fermented milk drinks then these should be taken daily for at least 1 month at the dose recommended by the manufacturer. Monitor symptoms and if these don’t improve then it may be worthwhile considering another brand as the type of bacteria used varies.

People who can help

If you are worried about your diet or symptoms, speak to your GP or practice nurse and ask to be referred to a dietician.

If you suffer from IBS and the above advice doesn’t help improve symptoms, individualised advice and specialist treatment, such as exclusion diets can be provided by a dietitian.

Healthy eating information may be found at the doctor’s surgery, local library, leisure centre or council.

Look at trusted online sources including:









is Irritable Bowel Syndrome?

Editor’s Note: Our thanks go to Amy and Zara for an excellent talk at our July meeting and for writing this report.

LIVE CONSULTATION

LIBERATING THE NHS: EXTENDING CHOICE OF PROVIDER

Following the NHS Future Forum listening exercise, the Government confirmed its commitment to the increased choice and personalisation of NHS funded services. This is intended to empower patients and their carers, improve their experience of NHS funded services and improve health outcomes.

In 2012/13 patient choice of Any Qualified Provider will start with a limited set of community and mental health services. This list has been developed by the Department of Health following discussions with national patient groups, clinicians, providers, voluntary organisations and commissioners on what services should be subject to increased choice. These services are:

• Musculo-skeletal services for back and neck pain

• Adult hearing services in the community

• Continence services (adults and children)

• Diagnostic tests closer to home such as some types of imaging, cardiac and respiratory investigations to support primary assessment of presenting symptoms

• Wheelchair services (children)

• Podiatry services (feet care)

• Venous leg ulcer and wound healing

• Primary Care Pyschological Therapies (adults)

NHS Kent and Medway (which represents three Primary Care Trusts: Eastern and CoastalKent, West Kent and Medway) must pick three or more of the above services for implementation of patient choice of Any Qualified Provider by September 2012.

We were asked to contribute to this and because this had to be sent by Monday 12th September 2011 we have had to make a decision on which would be our priorities as a Group. Those submitted are:

• Musculo-skeletal services for back and neck pain

• Diagnostic tests closer to home such as some types of imaging, cardiac and respiratory investigations to support primary assessment of presenting symptoms

• Continence services (adults and children)

NEW NHS DIRECT MOBILE APP

NHS Direct has launched a free mobile app so that people can access its health advice conveniently from wherever they are. It can be used to assess your own or someone else’s symptoms by answering a number of clinically designed questions. Outcomes may include instant on-screen self-care advice or instructions on the most appropriate course of action. You can save any self-care advice you receive back to the app or email it to yourself so that you can access it easily at a later date.

The app is linked to NHS Direct’s telephone service and, if a further assessment is recommended, you will be able to submit your contact details so that an NHS Direct nurse advisor can call you back.

Android™ Smartphone users can download the new app from the Android Market.

LINk Contact:

Name: Rebecca Barraclough

Telephone: 01303 297050 / 07976 596797

Email: rebecca@

NEW STUDY SHEDDING LIGHT ON RELATIONSHIP BETWEEN DYSCOGNITION (FIBROFOG) AND BALANCE DEFICITS

In recent surveys, persons with fibromyalgia reported balance problems as one of the top 10 most debilitating symptoms. 

Now, a new pilot study has found that ‘fibro fog” (dyscognition) may be one of the main contributing factors why non-elderly people with fibromyalgia are five times more likely to lose their balance and fall than healthy controls.

Fibromyalgia is characterized by overall chronic body pain, fatigue and sleep disorders; common symptoms include dyscognition or “fibro fog” which describes cognitive problems affecting memory loss, language use and learning. The study also found that weight gain, a common tendency for people with fibromyalgia from side effects of prescription drugs and inability to exercise, and abnormal tender points in the legs also affect balance and falls.

“Fibro fog may encompass short term memory loss, difficulties using language, and difficulties learning in a distracting environment,” said Kim Dupree Jones, the study’s lead researcher from Oregon Health 

Sciences University. “So when the brain is not processing signals to the feet quickly and accurately, then this dyscognition is highly related to objective balance scores and the number of self-reported falls.”

The study compared 25 middle-aged fibromyalgia patients and 27 matched healthy controls (HCs) with a combined mean age of 48.6. Participants underwent computerized dynamic posturography testing, a machine used to assess and quantify balance to determine whether a disorder is getting better or worse, or the response to treatment.

Study participants also completed the Revised Fibromyalgia Impact Questionnaire (FIQR) and balance/fall questionnaires. All subjects underwent a neurological and musculoskeletal exam.

According to the study, fibromyalgia patients scored statistically lower on balance tests that govern the eyes, ears, muscle and nerves.

Fibromyalgia participants also reported less balance confidence than healthy controls. Balance confidence was significantly different between groups, with fibromyalgia patients reporting less confidence than HCs.

“These findings are significant because it helps to dispel a lot of the myths and misunderstandings about people with fibromyalgia as being accident prone or not paying attention to their surroundings,” added Jones. “Frequent loss of balance confidence helps to explain why people with fibromyalgia avoid social gatherings and crowds, or just going out in general. They don’t want to fall in public. When fibromyalgia patients fall, it takes a long time for them to recover.”

The study also reported that 76 to 84% of fibromyalgia patients had abnormal lower extremity myofascial trigger points. The multiple tender points are pain points or localized areas of tenderness around joints which are used to determine a diagnosis of fibromyalgia. Only 11% of healthy controls had fallen only once during the past 6 months, whereas 72% of fibromyalgia patients had fallen at least once. Sixty percent of fibromyalgia patients reported falling more than 3 times in the past 6 months.

“Our findings strongly suggest that we need to further study these factors that contribute to loss of balance in fibromyalgia patients and to develop interventions that combine balance training with exercise and cognitive training,” said Jones. “Middle age people with fibromyalgia should not be performing at the level of 80- year olds.”

“Fibromyalgia symptoms in addition to chronic pain affect the quality of daily life for the millions of people suffering with fibromyalgia,” said Jan Favero Chambers, president and founder of the National Fibromyalgia & Chronic Pain Association, who was diagnosed with fibromyalgia in 2006. “People often mistakenly attribute balance and QOL declines with mostly the aging. By paying attention to the often overlooked aspects of fibromyalgia symptoms, this study can help improve overall health.”

The study was published in Arthritis Research & Therapy, Aug 2, 2011 by Kim D Jones, Laurie A King, Scott D Mist, Robert M Bennett and Fay B Horak, Fibromyalgia Research Unit, Schools of Nursing & Medicine, and PT Balance Disorders Laboratory, Neurological Sciences Institute, Oregon Health & Science University, Portland, Oregon, USA.

RAISING AWARENESS IN SOUTHERN IRELAND

On a holiday in Southern Ireland this year, we, by chance, got talking to a man in a small and beautiful town called Youghal (pronounced Yawl). He was very informative about the area and gave us lots of information including the opportunity to watch his wife and a group of ladies make lace at the local Library. In the event we spent a long time with them. I learnt such a lot about lace making including the fact that it was Youghal ladies who made a beautiful lace train for Queen Mary. Whilst I was enjoying myself, Ron got talking to some of the ladies who had asked why I wasn’t able to stand for long. This gave him the introduction he needed to spread the word about Fibromyalgia, and, would you believe it, one of the ladies had a daughter with the condition, and another had a friend with it. Both were interested in obtaining information so they were directed to our website and both will be having a DVD of the Conference talk by Professor Choy and myself. So, as you can see, there are always opportunities of spreading the word and raising awareness. This was especially relevant as it was a few days before UK Fibromyalgia Awareness Week.

And there’s more ……

Whilst on our way home from Ireland, we stopped in at a Tesco in Carmarthen for some Petrol and were stopped by the man who was directing the traffic in. He wanted to know where we got our Fibromyalgia Car Sticker as his partner has Fibro and he wanted to raise awareness of it. Naturally we treated him to one of our leaflets and directed him to our website. The moral of this story is, if you want to raise awareness and also help other Fibro sufferers then do purchase one of our Car Stickers (£1 each)

Margaret

IMPORTANT NEWS ON THE CONCESSIONARY FARES SCHEME FROM NATIONAL EXPRESS

The scheme currently provides up to half price travel for over 60 year olds and disabled people through Government funding. The Government has announced that this funding will end on 31 October 2011 as part of its spending cuts programme. While National Express are looking to introduce a replacement scheme, without the government funding it is not possible to make discounts as high and the cost of travel will increase.

National Express has written to the Government to ask that they reconsider this decision. They have also written to a number of MPs to raise their concerns. Many MPs have told them they agree and have written to ministers at the Department for Transport to ask them whether they have considered the potential impact on eligible passengers' ability to travel. If you share these concerns, perhaps you could write to, or email, your local MP, to encourage them to raise your concern with the Department for Transport.

JOB CREATION

My name is Sandra and I have Fibromyalgia. Because of this I am finding it very difficult to get a job. So I decided to create a job. My hope is Creation Cakes and Candles will become a viable business. I make cakes and decorate them for birthdays, Christenings, wedding and Christmas. The candles are from 'Party Lite' which can be sold as a 'party' where I come to your house with cake and you invite your friends, family, neighbours etc. When they purchase items from the catalogue the commission goes to you as the 'Host' so that you can buy what you want out of the catalogue for a reduced cost or even free. Alternatively you can buy one off items, with the commission going to the support group.

Thank you for reading this.

Sandra - 07854885179 for more information

RAISING AWARENESS & FUNDRAISING AT WORK

Tracey Kerr, one of our members, very kindly arranged for an awareness day at her place of work, Charities Aid Foundation. She invited us to bring along our display board, information and items for sale.

We hadn’t expected the effort Tracey had gone to, to not only raise awareness, but also to raise funds for this support group.

The event had been planned to coincide with Fibromyalgia Awareness Week and so it was great that we were able to hand out a large number of leaflets.

Tracey and her colleagues had made a very large number of cakes and these were snapped up by the many staff stopping by for that purpose. She had also bought some little yellow ducks labelled Fibroducks, that people bought and drew dots on to denote the Fibro tenderpoints. It was a tremendous effort and a very enjoyable time for us. Everyone was really friendly and welcoming.

I would like to thank Tracey very much for arranging this event and for the fantastic sum of £766.21 that she raised for the Group. Our thanks also go to Charities Aid Foundation for allowing Tracey to run the event (and for adding £250 to the sum of £516.21 raised), and the staff for giving her so much support.

GOVERNMENT PETITION ON FIBROMYALGIA

Follow the link HM Government e-petitions:

Click on the link, type in Fibromyalgia and it will bring up the petition "DWP to recognise Fibromyalgia as a real disability", click view to get to the petition and sign it if you wish.

ARTHRITIS RESEARCH UK SURVEY ON THE IMPACT OF PERSONAL HEALTH BUDGETS

Arthritis Research UK are asking for people with musculoskeletal conditions, including Fibro, to complete a survey to help them with a project working to understand the potential impact of Personal Health Budgets on people with musculoskeletal conditions.

A personal health budget aims to allow people to have more choice, flexibility and control over the health services and care they receive.

At the heart of a personal health budget is a care plan, the agreement between the primary care trust and the individual that sets out the person’s health needs, the amount of money available to meet those needs and how this money will be spent. The initiative, which has already been introduced for social care, is being trialled at 61 sites, 20 of which are described as “in depth” pilots. Invitation to join the trial was launched in 2009. About 1,500 patients, most with long term conditions, have so far been recruited. As musculoskeletal conditions have not been specifically considered in the piloting, Arthritis Research UK will use this survey to identify the issues raised by people with arthritis or musculoskeletal conditions as one way to bring their needs to the attention of the Department of Health.

The survey is available online at:

personalbudgets

FibroAction have been asked to publicise the survey as FibroAction is a member of ARMA, the Arthritis & Musculoskeletal Alliance.

PERSONAL STORIES

It is good to see members sharing their personal stories, and I would like to encourage more of you to send in your own stories. It is always good for members to read about others and particularly if it is about a positive experience.

You never know when something you have felt, or tried, that has helped you, will help someone else. Don’t be discouraged if you have difficulty putting things into words, just give the bare bones and I will do the rest.

NEWSLETTER ITEMS

Items for inclusion in this newsletter are very welcome, but please note that the newsletter is about Fibromyalgia and related information, for those with Fibromyalgia, and their supporters. It would be helpful, if you are able, if you can send it via email.

The inclusion of articles and features in this newsletter does not necessarily infer endorsement by the group/Association. Any advice or recommendation of a medical nature, given in this newsletter, should always be discussed with a medical professional. The group/Association cannot be held responsible for omission and /or errors.

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NEWSLETTER

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