by Jeanne Hambleton © 2008

NFA Leader Against Pain-Advocate

An email arrived at my inbox this morning warning of the dangers of too much information.

As if it is not enough with our Govt.  taking money from us without our permission, we now have to put up with more ‘robbing hoods’ stealing our money from the bank.

This information which is called cell phone advice is certainly worth recommending to friends and family.  

It reads, “I never thought of this…
This lady has changed her habit of how she lists her names on her mobile 
phone after her handbag was stolen.

Her handbag, which contained her cell 
phone, credit card, wallet… etc… was stolen.
Twenty minutes later when she called her hubby, from a pay phone telling him 
what had happened, hubby says ‘I received your text asking about our Pin 
number and I’ve replied a little while ago.’


When they rushed down to the bank, the bank staff told them all the money was already withdrawn.         The thief had actually used the stolen cell phone to text ‘hubby’ in the contact list and got hold of the pin number. 
Within 20 minutes he had withdrawn all the money from their bank account. 



Moral of the lesson : *Do not disclose the relationship between you and 
the people in your contact list. Avoid using names like Home, Honey, 
Hubby, Sweetheart, Dad, Mom, etc…. And very importantly, when 
sensitive info is being asked through texts, CONFIRM by calling back.


Also, when you’re being text by friends or family to meet them somewhere, 
be sure to call back to confirm that the message came from them. If you 
don’t reach them, be very careful about going places to meet ‘family and 
friends’ who text you.



PLEASE PASS THIS ON

I never thought about THAT!  As of right now, I no longer have ’home’ named on my cell phone.”

The moral of this story is get your own PIN number and do not share it with anyone. Take care and beware. Jeanne 

by Jeanne Hambleton © 2008

NFA Leader Against Pain-Advocate

It is great news from the USA with a second fibromyalgia drug now approved by the FDA (Food & Drugs Administration).

The news released by PRNewswire reveals the new drug called Cymbalta (R) (duloxetine HCl), manufactured by Eli Lilly & Company  (NYSE: LLY), a leading worldwide pharmaceutical company, has been approved by the FDA as the first serotonin-norepinephrine reuptake inhibitor with proven efficacy for reducing pain in patients with fibromyalgia.

Patients suffering with osteoarthritis, who have taken the new drug, have already reported a reduction in the pain severity in their knees.

Madelaine Wohlreich, MD, and medical advisor and research physician at Lilly said, “The approval of Cymbalta is important because it provides physicians and patients with a new treatment option shown to help reduce pain and improve functioning in this difficult-to-treat disorder.”

While the cause of fibromyalgia remains unknown, scientists believe it may be related to some combination of changes in brain and spinal cord chemistry (i); or genetics (ii); and possible stress (iii). Many researchers claim fibromyalgia is a disorder of increased sensitivity to pain.

How Cymbalta works for people is not fully known, but medical experts believe it increases the activity of two naturally occurring substances called serotonin and norepinephrine. These substances help communication in various areas of the brain and spinal cord that affect emotion. Research also suggests that these substances are part of the body’s natural pain-suppressing system.

Lynne Matallana, president of the National Fibromyalgia Association who suffers with fibromyalgia, is reported to have said, “The FDA approval of Cymbalta for the management of fibromyalgia is another important step in the efforts to ensure that people with fibromyalgia will have the availability of effective medications to help reduce the chronic, widespread pain of this life-altering disorder.”

In the USA it is estimated that approximately 5 million people (2% of the US population) suffer with fibromyalgia. The victims are mainly women (iv), (v). There is no known cure for this condition, which causes widespread pain, chronic fatigue, insomnia, cognitive disorders, and many other problems.

Daniel Clauw, MD, professor of medicine in the University of Michigan’s Division of Rheumatology and director of the Chronic Pain and Fatigue Research Centre at the University of Michigan said, “In fibromyalgia, there is no one-size-fits-all approach to managing the disorder.”

Cymbalta has received four approvals from the FDA for different complaints. These include fibromyalgia, the management of diabetic peripheral neuropathic pain (DPNP); the treatment of major depressive disorder; and generalised anxiety disorder, for adults aged 18 years and older.

DATA

Lilly established the efficacy of Cymbalta in two pivotal three-month clinical trials involving 874 patients with fibromyalgia. In both studies, Cymbalta reduced pain at study end point compared with placebo as measured by the Brief Pain Inventory (BPI) 24-hour average pain scale. (vi),(vii). The BPI is a scale that measures the severity of pain.

Significant improvement in pain for Cymbalta vs. placebo was observed in the first week of each study. Fifty-one percent and 55 percent of patients on Cymbalta had a 30 percent improvement on the BPI at end point (clinically meaningful relief is considered at least 30 percent pain reduction (viii)).

In addition, 65 percent and 66 percent of patients taking Cymbalta, 60mg daily, reported feeling better at end point as measured by the Patient Global Impression of Improvement (PGI-I). The PGI-I is a patient-rated scale that evaluates how much improvement has occurred since beginning treatment.

Cymbalta 60 mg was superior to placebo on the Fibromyalgia Impact Questionnaire (FIQ) Total Score. The FIQ is a scale that is used to assess and evaluate the impact of fibromyalgia on aspects of health and functioning believed to be most affected by the disorder.

In four pooled studies, the most commonly observed adverse events in Cymbalta-treated patients with fibromyalgia (greater than or equal to 5 percent and at least twice placebo) were nausea (29 percent), dry mouth (18 percent), constipation (15 percent), decreased appetite (11 percent), sleepiness (11 percent), increased sweating (7 percent) and agitation (6 percent). In the placebo-controlled clinical trials, the overall discontinuation rates due to adverse events for Cymbalta vs. placebo were 20 percent and 12 percent, respectively. (ix)

ABOUT CYMBALTA

Serotonin and norepinephrine in the brain and spinal cord are believed to both mediate core mood symptoms and help regulate the perception of pain. Based on preclinical studies, Cymbalta is a balanced and potent reuptake inhibitor of serotonin and norepinephrine that is believed to potentate the activity of these chemicals in the central nervous system (brain and spinal cord). Scientists believe its effects on depression and anxiety symptoms, as well as its effect on pain perception, may be due to increasing the activity of serotonin and norepinephrine in the central nervous system.

In the important safety information, the company warns that anti depression medicines can increase suicidal thoughts. Patients are urged to contact their doctor in the event of any worsening depression symptoms or unusual changes.

Doctors and patients are warned that Cymbalta ‘is not for everyone’. Patients should talk to their doctors about other medical conditions to avoid complications. Patients taking Cymbalta may suffer with dizziness or feel faint when standing. The most common side effects of Cymbalta include nausea, dry mouth, sleepiness, and constipation. This is not a complete list of side effects. For full Patient Information, visit http://www.cymbalta.com. It is recommended that patients should consult their doctor before taking Cymbalta.

ELSEWHERE

A six months trial under the heading ‘Efficacy and safety of duloxetine for treatment of fibromyalgia in patients with or without major depressive disorder: Results from a 6-month, randomized, double-blind, placebo-controlled, fixed-dose trial’ was carried out at the University of Texas Health Science Center, San Antonio, TX, USA.

An abstract published by PubMed (NCBI) from the trial carried out by Russell IJ, Mease PJ, Smith TR, Kajdasz DK, Wohlreich MM, Detke MJ, Walker DJ, Chappell AS, Arnold LM (http://www.ncbi.nlm.nih.gov/pubmed/18395345), states the study results demonstrated that duloxetine at doses of 60 mg/day and 120 mg/day appears to be safe and efficacious in patients with fibromyalgia. The primary objectives of this study were to assess the efficacy and safety of duloxetine for reducing pain severity in fibromyalgia patients with or without current major depressive disorder. This was a 6-month, multicenter, randomized, double-blind, placebo-controlled study. In total, 520 patients meeting American College of Rheumatology criteria for fibromyalgia were randomly assigned to duloxetine (20 mg/day, 60 mg/day, or 120 mg/day) or placebo, administered once daily, for 6 months (after 3 months, the duloxetine 20-mg/day group titrated to 60 mg/day).

The co-primary outcome measures were the Brief Pain Inventory (BPI) average pain severity score and Patient Global Impressions of Improvement (PGI-I) score. Safety was assessed via treatment-emergent adverse events, and changes in vital sign, laboratory, and ECG measures. Compared with placebo-treated patients, those patients treated with duloxetine 120 mg/day improved significantly more on the co-primary outcome measures at 3 months (change in BPI score [-2.31 vs -1.39, P<0.001] and PGI-I [2.89 vs 3.39, P=0.004]) and at 6 months (change in BPI [-2.26 vs -1.43, P=0.003] and PGI-I [2.93 vs 3.37, P=0.012]). Compared with placebo, treatment with duloxetine 60 mg/day also significantly improved the co-primary measures at 3 months and BPI at 6 months. Duloxetine was efficacious in patients both with and without a major depressive disorder. There were no clinically significant differences between treatment groups in changes in vital signs, laboratory measures, or ECG measures.

PMID: 18395345 [PubMed - in process]

REFERENCES

(i) Leventhal, LJ. “Management of fibromyalgia.” Annals of Internal Medicine. 1999; 131: 850-858. (ii) Arnold, L, et al. “Family Study of Fibromyalgia.” Arthritis & Rheumatism. 2004; 50(3): 944-952. (iii) Bennett, Robert M., et al. “An Internet Survey of 2,596 People with Fibromyalgia.” BMC Musculoskeletal Disorders. March 9, 2007. 8:27. (iv) Lawrence, et al. “Estimates of the Prevalence of Arthritis and Other Rheumatic Conditions in the United States.” Arthritis and Rheumatism.

FOR IMMEDIATE PRESS RELEASE

Thursday, June 12th, 2008

The FIBROMYALGIA and CHRONIC FATIGUE SELF-HELP GROUP will meet Thursday, June12th, 2008 at 6:30 PM

at the Quest-4-Life Wellness Center, located at Lenoir Mall, Lenoir, N . C.

Denise Lindsay, BS, LMBT of Wellspring Therapeutic Massage Care will present the program. She will include a demonstration of her own “Gentle Massage Technique for Fibromyalgia” and will also offer the group sample sessions free of charge. There will be no meeting July and August.

For more info, call Nancy at 828-758-2156 or Lindy at 828-754-2064.

FMS Global News

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Musicians Supporting Research

by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate

Quite apart from the pain and fatigue we endure as fibromites, one of the other biggest problems we have is being sleepless – in Seattle, Singapore or Southend – and missing out on our zzz’s. If you are anything like me, I am often still wide eyed at 4.30am worrying about how few hours sleep I would have if I actually dropped off to sleep immediately.

That is a strange expression, ‘dropping off to sleep’. It sounds as is you are falling off a log. But then some folk sleep like a log… the mind boggles! How does a log sleep?

To be serious, sleep, as we all know, is so very important as this is when our body takes care of the maintenance and repairs. Without proper sleep we are endangering our health.
With this in mind I decided to find help from the National Sleep Foundation – a great website full of helpful advice. I discovered that the sleep environment plays a big part in the ‘getting to sleep’ process.

The NSF article on this subject asks if a dripping tap keeps you awake, or the noise of a fan or a washing machine causes you some disturbance?

Have you tossed and turned because you are too hot, or too cold? What about the barking dog or cat that jumps onto your bed – have they ever disrupted your zzz’s?

Sorry, I must tell you a silly true story. When I was young, single and silly I had a stupid boxer dog who followed me everywhere – even to bed. All I can say is that happiness is sleeping against the wall in a single bed with the dog on the outside edge, Done in reverse as I found to my cost, you might as well sleep in the floor.

But back to business. Most of us recognize that the sleep environment can greatly affect how (and if) we sleep, but are you doing everything you can to make the bedroom a sleep haven? Is it time to make your bedroom more sleep-friendly? Will you try almost anything to make you sleep better? Well please take note about the sleep-stealers.

Noise and Sleep Stealers
Noises at levels as low as 40 decibels or as high as 70 decibels generally keep us awake. That means that a dripping tap can steal your sleep, as well as the next-door neighbor’s blaring stereo. These noises can have as great an impact on your sleep as ‘out-of-the-ordinary noises’. Studies show that sirens and traffic noise from a street can actually become soothing to longtime city dwellers. They would cringe at the thought of sleeping in a quiet desert or mountain climate, just as the absence of the tick, tick, tick of your favorite clock, while you try to sleep at a hotel, can become a sleep stealer.

What to do: Try to block out unwanted sounds with earplugs or use “white noise” such as a fan or an air conditioner. Take your favorite clock with you when you travel in order to recreate familiar sounds that help you sleep (as long as they will not keep your neighbors awake!)

Temperature
In most cases, temperatures above 75 degrees Fahrenheit and below 54 degrees will disrupt sleep, but even sleep researchers fail to agree on the ideal temperature for sleep. The point at which sleep is interrupted due to temperature or climate conditions varies from person to person and can be affected by bed clothes and bedding materials selected by the sleeper. In general, most sleep scientists believe that a slightly cool room contributes to good sleep. That is because it mimics what happens inside the body. The body’s internal temperature drops during the night to its lowest level. For good sleepers, this occurs about four hours after they begin sleeping.

What to do: In general, sleep scientists recommend keeping your room slightly cool — but achieving the ideal temperature is not always simple. What do you do if you and your partner disagree about room temperature? Turning the thermostat down at night in cold weather saves on fuel bills and sets the stage for sleep. Blankets, comforters or electric blankets can lock in heat without feeling too heavy or confining. Or the heat-seeking partner might dress in warmer bedclothes while the warmer partner might opt not to wear sleep clothes or bed covering. In summer, a room that is too hot can also be disruptive. In fact, research suggests that a hot sleeping environment leads to more wake time and lighter sleep at night with awakenings becoming more frequent. An air conditioner or fan can help, and a humidifier can provide relief if you are suffering from a sore throat or dryness in your nose.

Light
Much of our sleep patterns – feeling sleepy at night and awake during the day – are regulated by light and darkness. Light - strong light, like bright outdoor light (which is brighter than indoor light even on cloudy days) - is the most powerful regulator of our biological clock. The biological clock influences when we feel sleepy and when we feel alert. As a result, finding the balance of light and darkness exposure is important. Bright light helps to keep you awake during the day, but during sleep, bright lights can be disturbing.

What to do: Make sure to expose yourself to enough bright light during the day. Find time for sunlight, or purchase a light box or light visor to supplement your exposure to light. At bedtime, think dark: a dark bedroom contributes to better sleep. Try light-blocking curtains, drapes or an eye mask. If you find yourself waking earlier than you would like, try increasing your exposure to bright light in the evening. It may delay sleep onset but as little as one to two hours of evening bright light exposure may help you sleep longer in the morning. Also, make sure to avoid light if you wake up in the middle of the night to go to the bathroom. Minimize light by using a low illumination night-light.

Sleeping Surface
For the most part, we know people sleep better when horizontal and not cramped by space. Not much research has been done to understand the sleeping surface, but it is clear that it plays a role in getting a good night’s sleep. For example, tossing and turning on a lumpy 20-year-old mattress that does not provide support for your back or neck. This can stop you from getting the sleep you need and make you very sleepy (and stiff) the next day. Mattress experts say that too often consumers believe that ultra-firm mattresses are good for them, but research on patients with back pain found this was not true. A more supple, comforting mattress may lead to better sleep.

Also, know your pillow. Research shows that pillows house thousands of fungal spores, which can trigger allergies and compromise a weak immune system. The research shows that synthetic pillows held a greater amount of bacteria than feather pillows. One study found that synthetic pillows had as much as five times more dust-mite fecal matter than feather pillows. Feather pillows have thick casing to keeps feathers in. So, not only can a pillow affect your posture and quality of sleep, but it can also affect your allergies or asthma and make it very difficult to get a good night’s rest.

What to do: Give yourself enough space to sleep. If you share a bed with a partner, make sure it is large enough to give both of you room to move around. Replace an old mattress with a new one, and choose a pillow and mattress that fits you best (soft, firm, thick, thin?) and will be comfortable throughout the whole night. Consumer Reports recently found that consumers who spent 15 minutes or more testing each mattress at the store were more likely to be happy with their purchase. Also, consider encasing your pillow in a plastic cover under your pillowcase to keep dust-mites from interfering with your sleep and allergy or asthma symptoms.

Other Factors
Bed partners with sleep disorders can negatively impact your sleep. Have you ever been kept awake by your partner’s snoring? Or been jolted out of a sound sleep by your partner’s restless movements? If so, you are not alone. According to NSF’s Sleep in America poll, 67% of respondents reported that their partner snores, 27% said their intimate relationship was affected because they were too sleepy, and 38% said they have had problems in their relationship due to their partner’s sleep disorder.

What to do: Start off by talking to your partner about the problem. If he/she has not sought treatment for a potential sleep disorder, encourage them to see a doctor. Consider earplugs if snoring prevents your sleep. Try to create a sleeping arrangement that is comfortable for both you and your partner. Keep the lines of communication open.

TVs, computers, and work in the bedroom are sleep-stealing culprits. NSF’s Sleep in America poll found that 87% of respondents watched TV within an hour of going to bed at least a few nights a week. Doing work, watching TV and using the computer, both close to bedtime and especially in the bedroom, hinders quality sleep. Violent shows, news reports and stories before bedtime can be agitating. The sleep environment should be used only for sleep and sex.

What to do: Avoid highly engaging activities such as watching dramatic TV or doing work close to bedtime. Keep the TV and computer out of your bedroom! Make your bedroom a place that is focused around sleep.

Three in a bed
Cats and dogs can be cuddly in bed, but they may be interfering with your sleep. Anyone who has slept with another person in their bed knows that sharing a sleeping space can be disruptive, but when your four-legged friend gets added to the mix, it becomes even more complicated! While a pet can make your sleep environment more comfortable, the cat or dog is not mindful of whether it is interfering with your sleep.

What to do: Think about providing your dog or cat with a bed in your bedroom, instead of sharing your bed. Well-rested pet owners will have more energy and love to give to their pets!

My thanks to the National Sleep Foundation and Jessica Steinitz for allowing me to share this information with you. (www.sleepfoundation.org). Sweet dreams but maybe that is another story. Take care and talk again soon. Jeanne

Musicians Supporting Research

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By Jeanne Hambleton 2008

Every year on May 12 people suffering with fibromyalgia raise awareness about this invisible disability with the public who frequently ask, “Fibro what?’

For the first time ever the fibromites will be able to sing-along to a new singles CD called Fibro what? to provide the answer, while encouraging folk to by the CD to fund research to find a cure. This is thanks to a benevolent Manchester postman who wanted to help two million fibromites find a cure for their 24/7 illness.

Not only will the public hear the upbeat lyrics comedy singer song writer Dom Collins has set to music, describing the condition - aches and pains, sleep disorder, memory loss - but they can enjoy to three cheeky tongue in songs donated by the FM benefactor. Laughter is the best medicine they say but it is not necessary to have fibromyalgia to laugh with Dom Collins while supporting fibromyalgia research. Without government funding it is hoped the money from sales will help research and maybe lead to a cure.

Dom, who is well known on the Manchester and northern circuits for his good clean humour and funny songs about every day life, wrote the Fibro What song to help his friend, fibromite Christine Thomson.

“I wanted to do something to raise awareness for May 12 and when Dom offered to help I was delighted. I am fed up with the lack of government funding and doctors still telling us it is all in our heads. I am anxious everyone should know more about our invisible disability. I also felt it was important to highlight the need for research to find a cure. So the proceeds from sales will go towards Jeanne Hambleton’s new book PAIN 24/7 The Fibromyalgia Jigsaw©, due to be self published in the autumn, as the sales money from the book will go to research. The more books we sell the more money for research,” said Chris.

Holding a new contract with a well-known agent Dom expects to be busy playing, singing and making people laugh for the foreseeable future. His reviews compare him to Mike Harding and Richard Digance and claim Dom will go far. With a cheeky grin Dom said he loves to entertain and is available for any special occasion from divorces, funerals, vasectomies, wedding, birthdays and corporate affairs.

Delighted with the new CD, which uses her photographs, Chris has offered Fibro what? to fibromyalgia support groups up and down the UK to sell and play on May 12 at the special events to raise awareness.

ROYAL MALE

This is the second time this year that Dom, who is a postman, has been benevolent. In January he wrote ‘Jack’s Song’s, a tribute to Jack Judge, the writer of the WWI favourite ‘It’s a long way to Tipperary’. Dom donated half the proceeds of this CD to the Army Benevolent Fund (North West) and he launched the CD at the Tipperary Café in Stalybridge, Manchester, the site of the old Grand Theatre where the song was written in1912..

This first charity CD attracted letters of support from four members of the Royal family, HM the Queen who sent a lovely letter of thanks; HRH Prince Charles, the Princess Royal, HRH Princess Anne and HRH Prince Edward who all welcomed his support for the Army Benevolent Fund. He also received nice letters of congratulations from our PM Gordon Brown and Leader of the Opposition David Cameron. These can be viewed on Dom’s Blog on his website (www.domcollins.co.uk). Needless to say copies of Fibro What will be winging their way to Buckingham Palace.

But Fibro What? CD is just part of the story? There is a new fibromyalgia book on the way later this year. Written as a labour of love and self-published to preserve as much money as possible, sales money will contribute to research to find a cure for fibromyalgia – the pain fibromites live with for the rest of their lives.

With the present government making no effort to put aside a substantial sum of money for research, fibromites must do it themselves. Every Fibro What Cd is raising money towards research. For more information about the music or fibromyalgia email fibrowhat@mac.com or log on to http://fibrowhat1.wordpress.com. There are also Fibro What tee shirts and tote bags available.

OTHER MAY 12 EVENTS

May 12 is not just the International Fibromyalgia Awareness Day, but it is shared with the CFS/ME organisations, and is also listed as the International Nurses Day.

May 12 is the International Fibromyalgia Awareness Day, the birthday of Florence Nightingale, who was believed to have suffered with fibromyalgia and chronic fatigue when she returned from the Crimean War.

Born to wealthy parents in 1820 in Florence, Italy, she was described as a wild child. She took 36 nurses to British military hospital in Constantinople in 1854 when the Crimean War broke out. This was the first time female nurses had served in military hospitals under war conditions. She became known as The Lady of the Lamp.

The work of Florence Nightingale, the English army nurse, led to the creation of the International Red Cross. In her 30s Florence Nightingale suffered a paralyzing FM/CFS/ME-like illness and spent in the last 50 years of her life virtually bedridden. In hindsight some say she suffered with fibromyalgia. In spite of her illness, she founded the first School of Nursing. It is fitting that the determination of this lady of the late 19th century became an inspiration to victims of CIND – FMS/CFS/ME/PVFS/MCS (fibromyalgia, chronic fatigue, myalgic encephalopathy, post viral fatigue syndrome, multiple chemical sensitivity) and other long-term chronic pain illnesses in the late 20th century.

In East Wellow, in Hampshire, UK, at St Margaret’s Church, where Florence Nightingale was buried in 1910, a service is held on the Sunday after May 12. There is a significant memorial in the graveyard.

The website Answers.com tells us that every year in London in Westminster Abbey on May 12 there is a service during which a symbolic lamp is carried from the Nurses’ Chapel into the Abbey. This is passed from one nurse to another before the Dean of Westminster Abbey places it on the High Altar. It is said this is symbolic of passing the knowledge of nursing from one to another.

Wikipeda, the free Internet encyclopedia, provides a long list of important events which happened on May 12 including the Coronation of King George VI in 1937, the Queen’s father; in 1942 on this fateful day 1,500 Jews were sent to the gas chambers in Auschwitz; and on a brighter note on May 12 1965 the Soviet spacecraft Luna 5 crashed on the Moon.

INSPIRATION FOR MAY 12
The Awareness Day commemoration was the inspiration of Tom Hennessy, a American patient with chronic immunological and neurological diseases. His thoughts to link with
Florence Nightingale’s birth date galvanised the CIND community to pressurise governments to respond to these devastating illnesses. These days Tom is constantly bedridden and too ill to even answer emails, which still arrive from all over the world.

According to the CIND website symptoms of the chronic immunological and neurological diseases included cognitive problems, chronic muscle and joint pain, extremely poor stamina, and numerous other symptoms. The number of those suffering with these problems increased dramatically. In the 1980s, and patients were often dismissed by the medical profession as suffering from psychosomatic illness. It still happens today with some GPs.

As the illnesses became more widespread many people were so weak that they could not care for themselves. The mystery aches, pains and fatigue continued to spread unchecked with little response from government of the day. In order to raise awareness of the seriousness of the situation, the response was the MAY 12 International Awareness Day.
BETTER LATE THAN NEVER

Two days after the world celebrations the Fibro What composer, Dom Collins, is visiting the South Manchester Fibromyalgia Support Group in Sale on the evening on Thursday, May 15, with fibromite Christine Thomson, when he will be playing his guitar and singing Fibro What? to those with fibromyalgia.

This is a small group run by Leader Georgina Jameson with just 15 members including 4 men with fibromyalgia. The group covers Greater Manchester and Cheshire. It is unusual to have such a high percentage of men with FM in a group – almost a third. Members enjoy socializing, speakers, a library and a helpline. For more information about the south Manchester meetings contact the Leader. (georginajameson@talktalk.net)

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By Jeanne Hambleton

The Fibromyalgia Association UK will be raising awareness in a big way on the International Fibromyalgia Awareness Day on Monday 12th May, when fibromites from all over the UK, and MPs meet for coffee at Portcullis House Westminster.

Chairman of the Trustees of FMA UK, Pam Stewart said, “Our aim is to make MPs aware of how desperate the situation is for so many fibromyalgia sufferers living in their constituencies. We need to let MPs know of the day-to-day struggles people with fibromyalgia battle against just to lead as near ‘normal’ a life. We need their help and support. Fibromyalgia sufferers deserve a voice and deserve to be listened to.
“We need to raise the profile of fibromyalgia in order to persuade decision makers to adopt these guidelines officially so that full treatment programmes can be made available to all sufferers throughout the UK.”
Recent e-petitions to the No. 10 Downing Street website have raised the question of treatments and the government responses have indicated that it is up to each Primary Care Trusts to decide priorities for their area but, without clear national guidance, fibromyalgia mostly slips to the bottom of the list if it is considered at all.

Although more doctors are becoming knowledgeable about fibromyalgia, many people who contact Fibromyalgia Association UK say that having read about the symptoms of fibromyalgia, it has been down to them to suggest the possibility of this as a diagnosis to their GP. This diagnosis stills seems to be overlooked, despite the prevalence of the condition.

Diagnosis of fibromyalgia is just the beginning of the problems. There is still the minefield of treatment options. At worst some patients are still being told, “There is nothing that can be done; there is no cure; learn to live with it. It’s psychological – all in your mind”. At best there are one or two centres that offer a range of managing and coping strategies using pain relief units, physiotherapists, counsellors, hydrotherapy and other treatments. Unfortunately most of the alternative therapies are in the private sector and sufferers are unable to finance these long term or even short term. There are also many hospitals with very good supportive departments but, unfortunately, this is a postcode lottery.
“The method of diagnosis, initially developed for research purposes, has been shown to be both effective and simple. On assessment, a careful health history is taken. If the patient reports widespread pain for more than three months together with pain in at least 11 out of 18 tender point sites when they are pressed, then a diagnosis of fibromyalgia can be made.   ‘Widespread pain’ means pain above and below the waist and on both sides of the body. The ‘tender points’, or spots of extreme tenderness, are rarely noticed by the patient until they are pressed,” said the chairman. 
Most people must wait for an appointment with a consultant, usually a rheumatologist, before getting a confirmed diagnosed, when it should be possible to be diagnosed by the GP.

Sufferers can spend years going backwards and forwards to their GP with what seems to be many different conditions. During this time their general health often deteriorates, employment may become difficult or impossible and family and friends can become increasingly frustrated and unsupportive. There are instances where diagnosis is made fairly quickly, within a year, but the majority can take 3 - 5 years.

Fibromyalgia is a painful, non-articular condition predominantly involving muscle; it is the most common cause of chronic, widespread musculoskeletal pain and affects between 2%-3% of the UK population. Although there is a reliable diagnosis for fibromyalgia and treatment guidelines, many people still wait years to get diagnosed only to be told there is no treatment.
The European League Against Rheumatism (EULAR) has issued the first guidelines for the treatment of fibromyalgia syndrome (FMS) and published them in the September 2007 issue of the Annals of Rheumatic Diseases. This 9 point plan covers the treatment and diagnosis of fibromyalgia. Whilst these guidelines are not yet adopted by the National Institute for Health and Clinical Excellence (NICE) in the UK, they can be seen as a significant step forward.
For more information of fibromyalgia in the UK please send a 42p sae to:
Fibromyalgia Association UK, PO Box 206, Stourbridge, West Midlands, DY9 8YL
or visit the website www.fmauk.org.

For further information relating to this press release please contact Jean Turner 0845 3452603 jean@rfmsg.freeserve.co.uk

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Thursday, May 8th, 2008

Shelia Brown, RN

The FIBROMYALGIA and CHRONIC FATIGUE SELF-HELP GROUP will meet Thursday, May 8th, 2008 at 7:00 PM at the Quest-4-Life Wellness Center, located at Lenoir Mall, Lenoir, N . C. Sheila Brown, a Registered Nurse with Caldwell Memorial Hospital, will present the program “Maximizing Brain Power” or as she calls it: “Reach For The Stars” and “Laughter Therapy”. She will present easy and fun techniques that can be learned in one evening that increase relaxation, decrease stress, and enhance brain functioning! Sheila is a frequent motivational speaker and she promises a fun filled evening with lots of laughter! Next month’s meeting will be Thursday, June 12th at 6:30pm with Denise Lindsay, BS, LMBT of Wellspring Therapeutic Massage Care. Denise will demonstrate her own “Gentle Massage Technique for Fibromyalgia” and will offer the group sample sessions free of charge. There will be no meeting July and August. For more info, call Nancy Clay at 828-758-2156 or Lindy Wilcox at 828-754-2064.

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by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate

Almost daily I am saddened to read in the national press about another ‘bright’ idea to erode the innocence of childhood. Fancy underwear (‘bra’ and ‘pants’) for tiny tots instead of vests and knickers – the morning after pill for very young schoolgirls - the list goes on and on. Maybe it is all down to the march of time, technology and television.

As a child I wore what I was given or I could expect a slap around the legs and sent upstairs to bed in a room where there was only a bed. I even wore the baggy hated navy gym knicks with elastic gathering around the legs and waist. These were made of some ghastly navy blue interlock material with a fleecy lining.

Having said that a pair of navy gym knicks might not go a miss as a fibromite on these cold mornings when the winter gets into the bones. Do you think someone might market them just for fibromites? You have heard of Bridget Jones drawers - made for us they could be called Frozen Fibro Fillies drawers. I wonder how many of us would welcome them to keep warm.

But I started out writing about childhood innocence and this came about when I received the following information, which allegedly claims that children had replied to questions in the science lesson.

These are certainly some smart answers! But some of these replies did make me laugh out loud. Hope you enjoy them as much as I did.

Q: Name the four seasons.

A: Salt, pepper, mustard and vinegar.

Q: Explain one of the processes by which water can be made safe to drink.

A: Flirtation makes water safe to drink because it removes large 
pollutants like grit, sand, dead sheep and canoeists.

Q: How is dew formed?

A: The sun shines down on the leaves and makes them perspire.

Q: How can you delay milk turning sour? (brilliant, I love this!)

A: Keep it in the cow.

Q: What causes the tides in the oceans?
A: The tides are a fight between the Earth and the Moon. All water tends to flow towards the moon, because there is no water on the moon, and nature hates a vacuum. I forget where the sun joins in this fight.

Q: What are steroids?

A: Things for keeping carpets still on the stairs.

Q: What happens to your body as you age?

A: When you get old, so do your bowels and you get intercontinental

Q: What happens to a boy when he reaches puberty?

A: He says good-bye to his boyhood and looks forward to his adultery.

Q: Name a major disease associated with cigarettes.

A: Premature death.

Q: How are the main parts of the body categorized? ! ( e.g., abdomen)

A: The body is consisted into three parts — the brainium, the borax and the abdominal cavity. The brainium contains the brain; the borax contains the heart and lungs, and the abdominal cavity contains the five bowels A, E, I, O, and U.

Q: What is the fibula?

A: A small lie.

Q: What does “varicose” mean?

A: Nearby.

Q: Give the meaning of the term “Caesarian Section.”

A: The Caesarian Section is a district in Rome

Q: What does the word “benign” mean?’

A: Benign is what you will be after you be eight.

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Tenderpoints Newsletter

by Jeanne Hambleton© 2008

How often have we all said we are sick of folk saying ‘fibro what’ when we try to describe how we feel? Help is at hand! It is now set to music and you just hand those folk the new Fibro What? singles CD and sit back and listen.

Not only will they hear the upbeat lyrics comedy singer song writer Dom Collins has set to music, all about our invisible condition, aches and pains, but you can both listen to three cheeky tongue in cheek songs donated by our man from Manchester, and have a good giggle. Laughter is the best medicine they say.

Our bright lad, well known on the northern circuits for his good clean humour and funny songs about every day life, has written the Fibro What song to help his friend, fibromite Christine Thomson.

“I wanted to do something to raise awareness for May 12 and when Dom offered to help I was delighted. I am fed up with the lack of government funding and doctors still telling us it is all in our heads, and I am anxious everyone should know more about our invisible disability. I also felt it was important to highlight the need for research to find a cure. So the proceeds from sales will go towards Jeanne Hambleton’s new book PAIN 24/7 The Fibromyalgia Jigsaw©, due to be published in the summer, as the sales money from the book will go to research. The more books we sell the more money for research,” said Chris.

While climbing the ladder of success, Dom’s work has also been recognised by two Royals, Princess Charles and Prince Edward, as well as PM Gordon Brown and the Leader of the Opposition David Cameron, who were all delighted to receive a copy of the Jack’s Song CD for the January anniversary. You can read the letters on Dom’s website.

Holding a new contract with a well-known agent Dom expects to be busy playing, singing and making people laugh for the foreseeable future. His reviews compare him to Mike Harding and Richard Digance and claim Dom will go far. With a cheeky grin Dom told us he loves to entertain and is available for any special occasion from divorces, funerals, vasectomies, wedding, birthdays and corporate affairs.

Both Chris and I are delighted to have worked with Dom in these early stages of his future career and one behalf of almost one and a half million fibromites, we cannot thank him enough for simply caring and helping to raise awareness about fibromyalgia.

Delighted with the new CD, which uses her photographs, Chris wants to offer the new CD to Fibromyalgia Support Groups to sell and play on May 12 at the special events to raise awareness about this rotten disability. This would also make sure fibromites, our members, have the chance to buy a copy.

This is the second time this year that Dom has been benevolent. In January he wrote ‘Jack’s Song’s, a tribute to Jack Judge, the writer of the WWI favourite ‘It’s a long way to Tipperary’. Dom donated the proceeds of this CD to the Army Benevolent Fund (North West).

His first charity CD attracted letters of support from four members of the Royal family, HM the Queen who sent a lovely letter of thanks; HRH Prince Charles, the Princess Royal, HRH Princess Ann and HRH Prince Edward who all welcomed his support for the Army Benevolent Fund. He also received nice letters of congratulations from our PM Gordon Brown and Leader of the Opposition David Cameron. These can be viewed on Doms Blog on his website. Needless to say copies of Fibro What will be winging their way to Buckingham Palace.

For more details about Dom and his work log on to www.domcollins.co.uk. If you click MY SPACE top right hand corner you will hear some of the funny backing tracks and a verse or two from the new Fibro What CD. The tracks include “A Girl called Chips”, “Can you lend me a tenner, Dad?” and “Does my ar.. look big in these?”

Copies of the new CD Fibro What are available from jeannehambleton @ mac.com (no spaces) and will cost £3.75 plus £1 p&p for a UK packing and postage…total £4.75. Overseas postage will be advised. We hope you enjoy the Fibro What? CD and that your friends want you to buy a copy for them. You don’t have to have fibromyalgia to have a good laugh with Dom Collins as well as supporting our mission. The proceeds will help research and maybe lead to a cure.

But Fibro What? CD is just part of the story? There is a new fibromyalgia book on the way later this year. Written as a labour of love and self-published to preserve as much money as possible, sales money will contribute to research to find a cure for fibromyalgia – the pain we live with for the rest of our lives. May 12 is International Fibromyalgia Awareness Day and we hope that you and your friends will be listening and laughing with Dom’s cheeky songs and selling copies to other folk to support the cause.

Later in the year for a week in September, it is UK Fibro Awareness Week. To celebrate this we will be running a cabaret dinner in West Sussex full of comedy, humour and mirth. We are planning a charity auction hopefully with some celebrity donations. If you have any souvenirs you feel able to donate we will be delighted. Please contact me.

With the present government making no effort to put aside a substantial sum of money for research, we have to do it ourselves with help from friends like you. Thank you. Take care Jeanne.

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Tenderpoints Newsletter

Musicians Supporting Research

by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate

With the growing culture of street crimes, women are feeling more and more vulnerable if they have to work after dark or are coming home alone after an evening with friends.

Every day there seems to be more and more scary stories on the Internet and in the newspapers and ultimately this brings emails warning us to beware, tell all our friends and watch out.

Firstly we should all carry our mobile telephone switched on near the driving wheel when travelling alone at night in case of emergency. Also remember even from your mobile you can call 999 or 112 for help. Emergency calls to 999 or 112 in a genuine emergency where it is not possible to stop safely are exempt from a £30 fixed penalty.

But just to make me feel more insecure when out alone at night, I read this email on a Yahoo local community service and felt I should share it - whatever your views may be when you have read the whole story.

Please pass this notice on. It could save lives.

An important message from the Police

Please pass this along to all the women you know.
This actually happened a few weeks ago on the M3 Fleet services.

It
was early evening and a young girl stopped to get petrol.

She filled her tank and walked into the store to pay for her petrol.
The cashier told her ‘Don’t pay for your petrol yet…..walk around
the store for a while and act as if you’re picking up some other
things to buy. A man just got into the back of your car. I’ve called
the police and they’re on their way’.

When the police arrived, they found the man in the back seat of the
girl’s car and asked him what he was doing. He replied he was
joining a gang and the initiation to join is to kidnap a woman and
bring her back to the gang to be raped by every member of the gang.
If the woman was still alive by the time they finish with her then
they let her go.

According to the police that night, there was a new gang forming here
originating from London. The scary part of this is because the guy
didn’t have a weapon on him. The police could only charge him with
trespassing. He’s back on the street and free to try again.

Please be aware of what’s going on around you and for your family and
friends.

LADIES, you or one of your family and friends could be the
next victim. Please do not discard
this message. It is very important that everyone knows what is happening.

Please be careful when leaving your vehicle and make sure it is
ALWAYS locked to prevent this from happening to you.”

It could happen if your car was left unlocked.

This was followed by another warning – “MET POLICE

Subject: POLICE INFORMATION - ACTUAL SAFETY ADVICE

This first bit is mainly for women, but boys please read it and send
it on to any women you care about. The second bit is a warning to all
of us!

Some sound advice for us all as we all sometimes forget to take our
common sense with us when we go out. This is from Northants Police.

Women…. In light of the recent kidnapping and murder of young women I think it is important to read the following info for your
own safety.

Things women should know to stay safe:

Please take the time to read these pointers. There may just be one or
two you hadn’t thought of. After reading this, forward it to someone you care about. It never
hurts to be careful in this crazy world we live in.

I was also given tips about being attacked -

1. Tip from Tae Kwon Do: The elbow is the strongest point on your
body. If you are close enough to use it, do!

2. If a robber asks for your handbag, DO NOT HAND IT TO HIM. Toss it
away from you…. he is probably more interested in your handbag than
you and he will go for the handbag. RUN LIKE MAD IN THE OTHER
DIRECTION!

(There is an old saying –Don’t put all your eggs in one basket – in other words do not carry more cash than you need, and only one credit card. Who cares how big your handbag is as long as you have control of your valuables and they are safe at home!)

3. If you are ever thrown into the boot of a car: Kick out the back
tail lights and stick your arm through the hole and start waving. The
driver won’t see you but everybody else will. This has saved lives.

4. Women have a tendency to get into their cars after shopping,
eating, working, etc., and just sit (doing their cheque book, or
making a list). DON’T DO THIS! A predator could be watching you, and
this is the perfect opportunity for him to get in on the passenger
side, and attack you.

5. AS SOON AS YOU GET INTO YOUR CAR LOCK THE DOORS AND LEAVE THE AREA.

6. A few notes about getting into your car in a car park: (Hope your chose your parking space carefully near the entrance or in a well lit area)

a) Be aware: look around you, look into your car, at the passenger
side floor, and check the back seat.

b) If you are parked next to a big van, enter your car from the
passenger door. Most attackers surprise their victims by pulling them
into their vans while the women are attempting to get into their cars.

c) Look at the car parked on the driver’s side of your vehicle, and
the passenger side. If a male is sitting alone in the seat nearest
your car, you may want to walk back into the shop, or work, and get a
guard/policeman to walk you back out. IT IS ALWAYS BETTER TO BE SAFE
THAN SORRY (And better to be paranoid than dead).

THERE IS MORE ….

1. ALWAYS take the lift instead of the stairs. Stairwells are
horrible places to be alone and the perfect crime spot.

2. If the predator has a gun and you are not under his control
ALWAYS RUN! The predator will only hit you (a running target) 4 in
100 times; and even then, it most likely it WILL NOT be a vital organ.
RUN!

3. As women, we are always trying to be sympathetic: STOP IT! It
may get you raped, or killed. Ted Bundy, the serial killer, was a
good-looking, well-educated man, who ALWAYS played on the sympathies
of unsuspecting women. He walked with a cane, or a limp, and often
asked “for help” into his vehicle or with his vehicle, which is when
he abducted his next victim.

4. Another Safety Point:
Someone just told me that her friend heard a crying baby on her porch
the night before last, and she called the police because it was late
and she thought it was weird. The police told her “Whatever you do,
DO NOT open the door.” The lady then said that it sounded like the
baby had crawled near a window, and she was worried that it would
crawl to the street and get run over. The policeman said, “We already
have a unit on the way, whatever you do, DO NOT open the door.” He
told her that they think a serial killer has a baby’s cry recorded
and uses it to coax women out of their homes thinking that someone
dropped off a baby. He said they have not verified it, but have had
several calls by women saying that they hear babies’ cries outside their doors when they’re home alone at night.
Please pass this on and DO NOT open the door for a crying baby.

ALL CAR OWNERS AND CAR DRIVERS PLEASE READ

Warning!!!!

Be aware of new car-jacking scheme.

You walk across the car park, unlock your car and get inside. Then
you lock all your doors, start the engine and shift or put into
reverse. You look into the rear-view mirror to back out of your
parking space and you notice a piece of paper stuck to the middle of
the rear window.
So, you shift the gear stick back into park or neutral, unlock your
doors and jump out of your car to remove that paper or whatever it is
that is obstructing your view.
When you reach the back of your car that is when the car-jackers
appear out of nowhere, jump into your car and take off!! Your engine
was running, you would have left your purse in the car and they
practically mow you down as they speed off in your car.

BE AWARE OF THIS NEW SCHEME THAT IS NOW BEING USED IN
LONDON /MANCHESTER MAKING ITS WAY ACROSS THE COUNTRY!!!!! !!!

Just drive away and remove the paper later! It is stuck to your
window and be thankful that you read this email. I hope you will
forward this to friends and family especially to women! A purse
contains all identification, and you certainly do NOT want someone
getting your home address. They already HAVE your keys!!!

JUST BE AWARE AND TAKE CARE IT WILL PROBABLY ARRIVE IN YOUR AREA SOON

It is alleged this warning came from the Force Intelligence Bureau,
Strathclyde Police
So we are warned and if we do not take care it is our own silly fault BUT… with news of all the precautions we women should take when driving alone, comes news from one woman who said, it is all a hoax.

“There is no man out there waiting to get in the back of your car. You are spreading scare stories and you should check these out on Snopes.com – the site to find out if there is any truth when rumour has it,” they said.

Another email said, “re: Warning to all Women.

The details of this hoax can be found on

http://www.snopes.com/horrors/madmen/backseat.asp

It is a variation on an old hoax that has been going round the
Internet for years. I can’t imagine Strathclyde Police would be
best impressed with having their name attached to it!!
”

Back came a swift reply, “Even if this was all a hoax, surely it is better in this awful day and age to still warn people that these sort of things COULD happen and to just be aware and have some common sense when out alone.”

Further support came from another woman who wrote, “Even if it is a hoax, warning women off the
dangers of being in a car alone is extremely useful.
Perhaps you are safely in your bed at midnight. I am
driving home from work. I have on occasions had cars flash their lights at me
following me down a country lane.

“It is a frightening
experience to go through.
A lot of women think being in theirs cars is safe.
Wonder what you would do if someone got into your car
whilst at a petrol station or at traffic lights and
threatened you.
You must have searched the web for ages to prove me
wrong over this. I was asked to pass this message on
by someone who has had very bad experiences driving
two miles down the road coming home from work in
Bournemouth. All that is said in the e-mail does
happened in this country. Perhaps not yet in
our district. What is wrong with warning people
about the dangers?”

And a mere man added his words of wisdom, “It may be a hoax, but the basic message is well based. If it serves to alert a few people and make them vigilant that has to be a good thing. I, for example, have for many years locked my car at filling stations and when pulled up in traffic at spots like traffic lights.”

This last comment made me smile as I recalled a true story told to me some years ago about a patient with learning difficulties who had a passion for driving other people’s transport.

If he found a car with keys in it, off he would go for a drive, treating the vehicle with care as if it was his own. As you can imagine this passion got him into real trouble when he fancied driving an ambulance and stole this. Perhaps his only saving grace was the comments he left behind in the parked vehicle after running out of petrol in the middle of nowhere. He would leave notes saying that the tappets needed adjusting, or the tyre pressure on the back wheels were too low and he recommended the owner got it looked at. Harmless fun? Well he got his collar felt if you know what I mean.

Since I heard that story - never mind about a man in the back seat - I always lock my car when I go to pay at the petrol station to avoid theft as well as trespassers or rapists.

Do remember if you are driving alone and you are flagged down by what appears to be a police car, unmarked or otherwise, you have every right to drive to a busy, well lit area where you should feel safe, before dealing with the problem. You should report the incident on 999 before stopping or opening your door. If they are genuine police officers they will respect your safety precautions.

It is worth looking at these website - all with differing points of view about safety. Always good to share some sound ideas and good advice.

http://www.edmunds.com/advice/womenfamilies/articles/124632/article.html
http://www.aaroadwatch.ie/tips/women.asp
http://www.herald-journal.com/archives/1999/stories/women.html

Take care and beware. Jeanne

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