Saturday 26 May 2012

FMSSAS eNews 12.05.26

Hi everyone
After all that rain it has been wonderful to see the sun again, even if it has been a little too hot at times!  I’m not complaining though.  Think of all the vitamin D our bodies will be absorbing.  But be careful you don’t overdo it or you might get your skin sun-damaged.  I had actinic keretosis as a result of over exposure to the sun when living in warmer climes.  Not good!
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WORDz FOR THE WEEK
72.  The mind leads by reason but the heart follows by love  . . .
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The Queen’s Diamond Jubilee
The Jubilee Hour.  This campaign aims to recognise Her Majesty the Queen’s 60 years of public service by encouraging people to undertake 60 minutes of volunteering, or an act of goodwill. You can pledge your Jubilee hour to be done at any time in the Jubilee year.
Nice idea whether or not you normally give your time to charity.
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Heatwave Plan for England 2012 published
The Heatwave Plan and accompanying guidance is intended to raise public and professional awareness on how to prepare in case of severe hot weather and potential heatwaves this summer.
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UK GPs Conference has Voted unanimously for an end to the DWP/AtoS Work Capability Assessment rĂ©gime “with immediate effect”
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Chest Pain and Fibromyalgia
If you have fibromyalgia you may have noticed that you often feel intense pain in your ribcage and chest. This aching and stabbing pain is very common in fibromyalgia and can really impact on your enjoyment of life. If your chest pains are making it difficult for you to complete your work, get a good night’s sleep, or even breathe deeply, it is important to visit with your health care provider. Chest pain in fibromyalgia is usually nothing to worry about, but occasionally it can indicate other problems.
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The Spoon Theory
I am sure many of you have seen this before, but for those who haven’t . . . an analogy of what it is like to live with sickness or disability. 
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About Chronic Fatigue Articles
Teenagers perspective on chronic fatigue syndrome
Purse Organization For Fibromyalgia And Chronic Fatigue Syndrome
Coping with fms & cfs - Laundry tips
Coping with fms & cfs – Grocery shopping
Coping with fms & cfs - Cooking
Less connectivity & pain-dysregulation in fibromyalgia
Fibromyalgia Elimination Diet Success Story
Why Is Fibromyalgia Not Considered an Autoimmune Disease?
Hot weather woes with fibromyalgia and chronic fatigue syndrome
Gluten Intolerance in Fibromyalgia & Chronic Fatigue Syndrome
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Web MD Articles
Slideshow: 10 Fast Stress-Busting Pickp-Me-Ups
Eat to Avoid Pain
Many people with migraines find that certain foods trigger their headaches. Keeping a food diary can help you see which foods tend to trigger a headache -- and find out if avoiding that food helps prevent a migraine from striking.
Fibromyalgia and Sleep
Are you having trouble sleeping because you have fibromyalgia? Most people with the disease complain of trouble sleeping. No matter how long they sleep, it is rarely restful. Here's some information that can help you get a better night's sleep.
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How to Beat Pain – BBC 1 19.30, 28th May
Dr Jack Kreindler and Professor Greg Whyte tackle pain - one of the most common complaints in Britain. To reveal key facts about chronic back pain, osteoarthritis and acute pain, and give insight into how these debilitating conditions can be treated, these medical mavericks use each other as human guinea pigs in fun and often painful experiments
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Irritable bowel syndrome, or IBS, is an uncomfortable and sometimes painful disorder affecting up to 1 in 5 persons. Effective treatment options have been somewhat limited, but researchers recently reported that two prevalent drug therapies — rifaximin and lubiprostone — may be preferred options, depending on the type of IBS. Also important, a unique but simple statistical approach is presented for calculating benefit-to-harm ratios for any therapy.
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Gupta Amygdala Retraining
This is a brand new powerful treatment for Chronic Fatigue Syndrome, ME, Fibromyalgia, and associated conditions.
FREE ONLINE VIDEO COURSE
If you would like to receive a FREE online video course about the causes of these conditions, please register your name and email.
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Fibro and Your Marriage
Any marriage or intimate relationship has its shares of normal ups and downs. But being diagnosed with a condition like fibromyalgia creates dramatic additional challenges and strains. When you have fibromyalgia, your spouse has to accept you as a somewhat different person, someone whose energy may be limited and whose skills may be reduced. For some people, this transition can be difficult. Your spouse may mistake your fatigue for a lack of interest in what's going on in his life and your pain as an excuse for getting out of chores. It may be hard for him to realize and accept just how sick you are, especially if you have no outward symptoms.
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Eastbourne Support Group Meetings Venue Change
The meeting held every first Wednesday of the month  is now held at TJ Hughes, 177/87 Terminus Road, Eastbourne, East Sussex BN21 3NX at 11.30am.
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Camberley Support Group now Active Again
For details of meetings please contact Amanda Tel: 01276 63595 Best times to call are Mon,Tue,Wed 10am - 2pm and weekends Sat/Sun between 4pm-6pm or Email:  camberleyndistrictfmsg@gmail.com
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Brighton & Hove Support Group Back on Track
Meetings every second Wednesday of the month 2pm to 4pm at St Luke's Prestonville Church, 64 Old Shoreham Road, Brighton, BN1 5DD.
For more info contact Organiser: Nichola 07796653477
Email: beauty_within_15@hotmail.co.uk or
Caroline on Helpline 0844 8872 376 or Email: eddytheedd@btopenworld.com
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I guess I had better sign off now.  I wish you well in all aspects of life – physically, mentally and spiritually. 
Best of wishes to you all
Stella
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N.B. I would like to point out to you all that the information in my eNewsletters does not necessarily infer endorsement by the charity Fibromyalgia Support for Surrey & Sussex.   Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional. The charity cannot be held responsible for omissions and/or errors.
Sites I refer you to are for information only.  They might conflict in their opinions, they might not even be medically sound, but I merely offer them for you to peruse and make your own judgements, accept or reject as you will.  Only by reading widely can we get an overall picture of fibromyalgia syndrome and how we can deal with its symptoms, learn to cope with them and still have a life.
I also include various awareness and local issues as well as general health considerations.    Anyone wishing to reproduce any of the above items in printed form should seek permission from the originators.
Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr.
Past issues of FMSSAS eNews can be found at www.fms-sas.co.uk/fmseNews.html and on a blog at http://fmssas-enews.blogspot.com/




Saturday 19 May 2012

FMSSAS eNews 12.05.19


Hi fibro friends
I had good reports of the posters for May 12th being distributed.  Who knows the outcome?  We hope they were seen by both fibromites and non-fmites.  Thanks to those who participated.  Awareness isn’t only for May 12th, or the awareness week in September.  We should be striving to make people aware all the time.  Get the message out there!
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WORDz FOR THE WEEK
71.  Live like a candle which burns itself, but gives light to others.
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Kelly’s Kontributions
Patients With Fibromyalgia Display Less Functional Connectivity In The Brain's Pain Inhibitory Network.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1204e&L=co-cure&F=&S=&P=59
Natividad Medical Foundation Receives New Grants for Fibromyalgia
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1205a&L=co-cure&F=&S=&P=31248
Association between Thyroid Autoimmunity and Fibromyalgia
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1205a&L=co-cure&F=&S=&P=27766
Monoamine oxidase inhibitors (MAOIs) for fibromyalgia syndrome.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1204c&L=co-cure&F=&S=&P=15982
CFIDS/FM Self-Help Videos
http://www.cfidsselfhelp.org/videos
Sensory Overload: Sources and Strategies
http://www.cfidsselfhelp.org/library/sensory-overload-sources-and-strategies
Living with Fibromyalgia: What Helps Me
http://www.cfidsselfhelp.org/library/living-with-fibromyalgia-what-helps-me
How Your Doctor Can Help If You Have CFS/ME
http://www.cfidsselfhelp.org/library/finding-and-working-with-doctors
Should rheumatologists retain ownership of fibromyalgia? A survey of Ontario rheumatologists.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1205a&L=co-cure&F=&S=&P=29428
Predictors of clinical outcome in fibromyalgia after a brief interdisciplinary fibromyalgia treatment program: single center experience.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1205a&L=co-cure&F=&S=&P=30314
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Fibromyalgia Awareness Contest
Since 1992, support groups and individuals have celebrated Fibromyalgia Awareness Day on May 12th or throughout the month of May. The concept was started by patient advocate Tom Hennessy, Jr., President of RESCIND, Inc., as a yearly reminder to the public and to health officials that people like you really do exist. Since then we have come a long way, but we still have far to go with more work, research, and understanding.
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Sainsbury's stores seek local charity nominations
Supermarket Sainsbury's is inviting customers and colleagues to nominate their favourite local charity at their local store. The selected charities will receive a year's worth of fundraising and awareness raising support from that store.  Why not nominate Fibromyalgia Support for Surrey and Sussex or your local support group?
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Spend and Raise
See the recent newsletter with offers, competition and updates.  When I looked £21.80 had been raised for FMSSAS.  Thank you to whoever made this possible.  Please look and see if your shopping through this site can raise even more money for us.  Thanks in anticipation.
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Debbie Stevens Girls’ Nights In
Includes a two course meal and a treatment.
Next events – click on the links for more information
Or go to Debbie’s website www.debbiestevenswellbeing.co.uk for more information
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Environmental Illness Resource
The Environmental Illness Resource is an information resource and interactive community site for people suffering from a range of chronic multi-system illnesses which are poorly understood and for which there is currently very limited healthcare available. This includes Fibromyalgia.
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The MicroDoctor® - Cutting edge technology to give you EFFECTIVE pain relief
If chronic pain is ruining your enjoyment of life, then the MicroDoctor® could be the answer. At the touch of a button you can tackle pain anywhere in your body within minutes. Try it now by following this link.
No unpleasant twinges or needles. No sticky pads. No tingling sensations. Only fast DRUG-FREE relief from swollen and stiff joints, strained tendons and ligaments, back and neck pain, in fact pain any - where in your body. Once again you could enjoy gardening, walking, driving and all those activities that make you truly happy.
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500,000 to lose disability benefit
Half a million people are set to lose disability benefits as the Government pushes ahead with plans to rid the system of abuse and fraud, Iain Duncan Smith says.
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Mind Aerobics
Revolutionary audio technology scientifically proven to:

Supercharge mental abilities...
Shrug off stress...
 Improve focus and creativity...
Ramp up memory scores...
 Induce deep relaxation...
 Help you sleep like a baby...
 Make harmful levels of cortisol plummet as much as 80%...

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PainSolv
This biomedical breakthrough  -  developed entirely through evidence-based science and using state-of-the-art technology  -  involves NO drugs, NO surgery and NO expensive, complicated equipment…
 In fact, this one simple device could help your body mend itself so effectively, your joint or muscle pain could reduce dramatically in a fortnight!
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A Teenager's Perspective on Chronic Fatigue Syndrome
Those of us with fibromyalgia and chronic fatigue syndrome can learn a lot from each other, and that's true regardless of age.
A recent Readers Respond from a teenager is a great example of that. She's having a rough time, but she's also finding ways to deal with it.
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Laughing About Fibromyalgia & Chronic Fatigue Syndrome
When you have fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS), it can be hard to keep a sense of humor. Now and then, we need to make sure we're still able to laugh, and that we don't take ourselves too seriously -- one of my favorite movie quotes is from Steel Magnolias: "Laughter through tears is my favorite emotion." http://chronicfatigue.about.com/b/2012/04/28/laughing-about-fibromyalgia-chronic-fatigue-syndrome.htm?nl=1
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Preparing for Flares - Don't Be Caught Without the Things You Need!
Flare-ups are an unavoidable part of life for a lot of people with fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS). Both illnesses can include flares (I use that term interchangeably with flare-ups), when symptoms get significantly worse; and remissions, when symptoms recede to lower levels.
http://chronicfatigue.about.com/od/copingwithfmscfs/a/Preparing-For-Flares.htm?nl=1
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Fatigue Not a Factor in Fibromyalgia Pain, Study Says
Lack of sleep did not predict intensity, duration of discomfort with the disorder
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Role of Impaired Sleep in Fibromyalgia Pain Explored
Patients coping with the complex pain disorder fibromyalgia often have difficulty sleeping, and a new study published in The Journal of Pain reports that despite the negative quality of life implications, poor sleep is not a significant predictor of fibromyalgia pain intensity and duration.
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The Assault on Chronic Pain in Fibromyalgia and ME/CFS - a Combined Approach
Dr. Sarah Myhill is a UK-based physician and clinical nutritionist with a special interest in the treatment of fatigue, chronic fatigue syndrome (ME/CFS), and fibromyalgia (DrMyhill.co.uk).
Normally, pain is accompanied by healing and repair, and this involves inflammation. But when things get complicated, as with autoimmune activity, fibromyalgia and ME/CFS, it is almost impossible to tease apart the threads of chronic pain, chronic fatigue and inflammation. And it is a combined approach that gets results.
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Leah Jarrett
has put together a very quick survey to find out more about activity levels of FM sufferers, please take a minute to fill it in. Thanks!
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I did have more stuff for you but this is probably enough for now!  I hope you are learning ways to cope and even recover.
Bye for now
Stella
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N.B. I would like to point out to you all that the information in my eNewsletters does not necessarily infer endorsement by the charity Fibromyalgia Support for Surrey & Sussex.   Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional. The charity cannot be held responsible for omissions and/or errors.
Sites I refer you to are for information only.  They might conflict in their opinions, they might not even be medically sound, but I merely offer them for you to peruse and make your own judgements, accept or reject as you will.  Only by reading widely can we get an overall picture of fibromyalgia syndrome and how we can deal with its symptoms, learn to cope with them and still have a life.
I also include various awareness and local issues as well as general health considerations.    Anyone wishing to reproduce any of the above items in printed form should seek permission from the originators.
Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr.
Past issues of FMSSAS eNews can be found at www.fms-sas.co.uk/fmseNews.html and on a blog at http://fmssas-enews.blogspot.com/
FMSSAS website is www.fms-sas.co.uk




Saturday 12 May 2012

FMSSAS eNews 12.05.12


Greetings on this Fibromyalgia Awareness Day!
 I hope you remembered to wear purple.  Apologies for putting the wrong date on last week’s eNews.  I must have been anticipating the Bank Holiday!  I hope you enjoyed Monday.  I did.  The Launch Lunch for the ME, CFS & FM Recovery Association went well.  Quite well attended, and interesting.  The advocated holistic approach to recovery is to be applauded but time will tell how it works out in practice.  Further information is on their website www.mecfra.org  There is to be a conference in November which I have signed up to attend.
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WORDz FOR THE WEEK
70.  If God had meant for today to be perfect, he wouldn’t have created a tomorrow.
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May 12: Awareness Day for Fibromyalgia & Chronic Fatigue Syndrome
Awareness is a powerful thing. It's done wonders for some illnesses, such as muscular dystrophy, breast cancer and Parkinson's disease. Awareness means public acceptance and money for research - both of which are desperately needed by those of us with fibromyalgia and chronic fatigue syndrome.
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From Clare Palmer on Facebook
9:47am May 12
            Good morning all, I hope you have a positive Awareness Day. This is the 20th ME Awareness Day, started originally by Thomas Hennessy. The Awareness Day now includes Fibromyalgia, Lyme Disease and Gulf War Illness. Unfortunately Thomas's laptop broke yesterday! (Bad timing!!). On the 20th Anniversary I look forward to hearing how he sees the situation now.
            I have mixed feelings about how far we have come. On the one hand we have cases like Karina's, and this is not isolated. People are sectioned in this country, children are on the at risk register in this country also. Parents are made to feel like criminals.
            On the other hand we have a journalist, a high profile journalist that is willing to fight for us all. She is definitely researching for an article on Fibromyalgia, so that is something we can all look forward to seeing.
            Fibromyalgia needs more advocates, needs more vocal charities, in my opinion the charities are doing nowhere near enough to make the difference that is so needed. There is only ONE Fibromyalgia Charity funding research, I find that unbelievable!
            People often think it is better for the ME patients, they have more advocates and it is more recognised. NOT SO!!! ME can be a dangerous diagnosis to have, the psychiatrists have almost a full hold on the treatment of the illness. People are dying! There have been 5 reported deaths in recent times. The numbers are suspected to be far higher. Specialist Autopsies show serious infection within the spine of these patients. And yet all the NHS offers is CBT and Graded Exercise Therapy.
            As time goes on the cases of Chronic Lyme Disease are increasing. More education is needed. There is so much ignorance with this illness. We could find in future years that Lyme Disease is behind all of these other illnesses. The jury is still on on this.
            The patient community is stronger than ever, there is REAL research being funded. Not by governments but by charities. Patients have had enough!!! They are forced to fund their own research, and we will!!!
            WE WILL FIND THE CAUSE AND WE WILL FIND THE TREATMENTS
            HAPPY 20TH AWARENESS DAY EVERYONE
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Worthing Fibro News, May
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This and other related articles.
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Fibroduck Foundation
The Fibroduck foundation are COMMITTED to funding true biomedical research into fibromyagia, to look for causes and eventually a cure.
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All your Gluten-free needs catered for – if GF is what you need
Order gluten-free meals andf snacks online for homr delivery
This site provides an easy way to look for a safe place to eat, stay and shop, helping you to manage your gluten-free or special diet.
If you use an iphone you can get an application for £2.99,  You will be able to search Country, Region, Town and a venue of your choice whilst travelling anywhere in the UK, Europe the USA, Canada and Australia.
You can search for Hotels, Restaurants, Cafes and Takeaways with online shopping to follow very quickly.
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Another Phone App - Tracking of Fibromyalgia, Other Pain
The creator of a smart-phone app for tracking chronic pain has announced that fibromyalgia is among the top conditions for which people use the app.
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Thyroid UK - Our Government e-petition to Fund research into T3 and/or NDT treatment
Thyroid UK have a petition to sign to encourage more research into Thyroid and T3. Below is info on the petition and the second link is where you sign it.
Info about the petition:
Sign the petition here:
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All in the mind? Why critics are wrong to deny the existence of chronic fatigue
An article in the Daily Mail on line that acknowledges ME for what it is and not what the brainwashing, whitewashing authorities would have the public believe.
http://www.dailymail.co.uk/debate/article-2141230/All-mind-Why-critics-wrong-deny-existence-chronic-fatigue.html
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The Stages of Fibromyalgia
Get Tips to Ease Fibromyalgia Symptoms and the Burden on Caretakers.  A 9 stage article
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Car Travel With Fibromyalgia & Chronic Fatigue Syndrome
Traveling in a car when you have fibromyalgia or chronic fatigue syndrome takes planning. That goes for a week-long vacation or a trip to the grocery store.
Because our symptoms can flare at a moment's notice, we need to be prepared no matter where we are or what we're doing. It's more difficult to take care of ourselves when we're away from home. Putting some thought into your trip and having the right things on hand can keep a bad situation from becoming a crisis.
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I hope you have found some useful tips and tricks to help you along.  I hope to be back again next week with further goodies for you.  Until then
Keep good and stay as well as you can.
Stella
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N.B. I would like to point out to you all that the information in my eNewsletters does not necessarily infer endorsement by the charity Fibromyalgia Support for Surrey & Sussex.   Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional. The charity cannot be held responsible for omissions and/or errors.
Sites I refer you to are for information only.  They might conflict in their opinions, they might not even be medically sound, but I merely offer them for you to peruse and make your own judgements, accept or reject as you will.  Only by reading widely can we get an overall picture of fibromyalgia syndrome and how we can deal with its symptoms, learn to cope with them and still have a life.
I also include various awareness and local issues as well as general health considerations.    Anyone wishing to reproduce any of the above items in printed form should seek permission from the originators.
Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr.
Past issues of FMSSAS eNews can be found at www.fms-sas.co.uk/fmseNews.html and on a blog at http://fmssas-enews.blogspot.com/
FMSSAS website is www.fms-sas.co.uk