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FMS eNews 10/08/13

Hi everyone

 There are lots more goodies for you this week.  Don't forget you need to click on the provided links in order to read the full articles.  There's such a wealth of information and advice available.  I take the time to find it all for you.  I hope you take the time to read it!  I know many do - I value the messages of appreciation I receive from time to time.

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WORDz for the WEEK

 130. I'm not perfect . . . I love my flaws.  All the scars are simply proof of the many battles I've made it through.  Learn what life teaches you and have the wisdom to then apply it.
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A message from Pam Stewart, Chair of FMA UK
Pam Stewart
The Stene Essay is a chance to raise awareness of fibromyalgia if your entry can get through to the national finals and then through to Europe.  The first stage is to get your entry to FMA UK so that we can pass this on to the UK representative organisation of PARE to which we belong.
The title “Vision 2043 – my ideal world for people with a rheumatic or musculoskeletal disease” is certainly a challenging one.
There is no limit to the number of entries we can make to them but only one can go forward from all the organisations to represent the UK.  Please make sure you have read the rules.
Please send your entry to pam.stewart@fmauk.org
After judging has completed we can use any entries for our own publicity so nothing is wasted.  Start thinking and jotting down your ideal wish list ready to form them into your essay.
Full information and rules can be found at http://goo.gl/cAEY1y and http://goo.gl/5IF4DS
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"Practical Living with Fibromyalgia"

 An insight into daily living with Fibromyalgia as experienced by sufferers, their partners and carers  By Maurice S Clarke.
Written by the founder of Fibromyalgia-Support Net web site this free book is based on the stages and experiences of Fibromyalgia as seen through the eyes of sufferers and their partners.

 http://fibromyalgia-support.com/book/
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 Slideshow: A Visual Guide to Acupuncture
What Is Acupuncture?
Acupuncture is an age-old healing practice of traditional Chinese medicine in which thin needles are placed at specific points in the body. It's primarily used to relieve pain but also has been used to treat other conditions. More than 3 million Americans use acupuncture, but it is even more popular in other countries. In France, for example, one in five people has tried acupuncture.

 http://www.webmd.com/pain-management/ss/slideshow-acupuncture-overview?ecd=wnl_cbp_080113&ctr=wnl-cbp-080113_ld-stry&mb=
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Consider Heat or Ice

 Heat helps soothe stiff joints and relax muscles. Cold helps numb sharp pain and reduce inflammation. Use temperature therapy to complement meds and self-care. It's simple, affordable, soothing -- and you have to sit down to use either one.

 http://www.webmd.com/pain-management/try-heat-or-ice?ecd=wnl_cbp_080113&ctr=wnl-cbp-080113_promo_4&mb=

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Myofascial Pain Syndrome (Muscle Pain)

 Myofascial pain syndrome (MPS) is a fancy way to describe muscle pain. It refers to pain and inflammation in the body's soft tissues.

 http://www.webmd.com/pain-management/guide/myofascial-pain-syndrome?ecd=wnl_cbp_080113&ctr=wnl-cbp-080113_promo_3&mb=

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Understanding Post-Traumatic Stress Disorder -- Symptoms

 Post-traumatic stress disorder -- or PTSD -- is a condition in which one's life has been guided or dictated by an actual or perceived severe traumatic experience of the past.

 http://www.webmd.com/anxiety-panic/understanding-posttraumatic-stress-disorder-symptoms?ecd=wnl_cbp_080113&ctr=wnl-cbp-080113_promo_2&mb=
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10 Morning Mood Boosters

 Guarantee a better day by starting your a.m. off right with these easy tricks

 http://www.webmd.com/balance/features/morning-mood-boosters?ecd=wnl_slw_080413&ctr=wnl-slw-080413_ld-stry&mb=
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Two new studies show that supplementing with coenzyme Q10 may help reduce pain in fibromyalgia sufferers.
The first small study was a randomised, double-blind, placebo-controlled study involving 20 patients with 

 fibromyalgia. Supplementation with 300 mg of coenzyme Q10 (CoQ10) a day for 40 days was found to be associated with clinical improvements, including a significant reduction in pain, fatigue, and morning tiredness. . . . . .
The second study published in the journal Redox Report was also small one involving 10 children with fibromyalgia and 67 healthy controls.

 http://www.nyrnaturalnews.com/pain-2/2013/04/studies-show-benefit-of-coq10-in-fibromyalgia/#.Uf1s6wzXtQQ.facebook
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Children with Fibromyalgia

 28% of CHILDREN who are born to a parent with fibromyalgia will eventually develop the disease.

https://www.facebook.com/photo.php?fbid=307858162647548&set=a.286148818151816.47593.285789964854368&type=1&theater
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The Fibromyalgia Drugs Your Doctor (Probably) Knows Nothing About
  Many doctors restrict their drug prescriptions to the three drugs the FDA has approved for fibromyalgia. 
The Mayo Clinic – which appears to set the standard for brief, pithy and unrevealing treatment prescriptions for FM and chronic fatigue syndrome – lists just three categories of FM drugs: NSAID’s, anti-depressants and anti-seizure drugs. 
Adding muscle relaxants, pain relievers (tramadol, opioids) and benzodiazpines to the mix, WebMD does better, but that list, as a recent review article focusing on possible FM drugs indicated, is still far too short. . . . .

http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=18225&B1=EM073113F&utm_source=EM073113F&utm_medium=em&utm_campaign=FM&slvor=11203.1105577.0.1.0.390600&eid
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A Doctor's Letter to Patients with a Chronic Disease
Dear Patients:
You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?   How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?   How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?
I can’t imagine.

 http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=18247&B1=EM073113F&utm_source=EM073113F&utm_medium=em&utm_campaign=FM&slvor=11203.1105579.0.1.0.390600&eid
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Does Your Brain Have an Effect on Your Pain?
Did you know our reactions to pain get catalogued in our brain? It doesn’t miss a beat. Some say "yes it does" because the brain does not react to chronic pain the same way it does to acute pain.  Hmmm, read on and you will see why I believe that is thinking INSIDE the box.  

http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=18246&B1=EM073113F&utm_source=EM073113F&utm_medium=em&utm_campaign=FM&slvor=11203.1105585.0.1.0.390600&eid
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What’s in Your Cup? The Drinking Problem No One is Talking About 
Sugary drinks that contain little to no nutritive value (empty calorie beverages) are linked to the rising obesity epidemic as well as to other dire health-related consequences.(1,2)
It’s not front page news to announce that sugar is unhealthy. The surprising revelation, however, is that it matters how we consume sugar. In fact, it matters a great deal.

 http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=18237&B1=EM073113F&utm_source=EM073113F&utm_medium=em&utm_campaign=FM&slvor=11203.1105581.0.1.0.390600&eid
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Check out InTheNews for daily updates on the latest medical news releases and other news items which may be of particular interest.

 http://cfsknowledgecenter.ning.com/?xg_source=msg_mes_network

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The Eat to Beat Fibromyalgia Challenge with Dr Dee (Dierdre Rawlings)

 Who Else Wants To End Exhaustion, Finally Banish Debilitating Pain, Sleep Blissfully Every Night, Watch The Scale Go Down 

 10+ Pounds …Without Gaining It Back, and Feel Lighter, Brighter, & Happier than Ever?
Introducing A Hand-Held Approach To Removing The Barriers to You Having Your Body Be Pain-Free So You Can Have More Freedom To Live Life Exactly How You Want To

 http://www.eattobeatfibromyalgia.com/
Hope it's not too late for the low price offer.

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Why Pain is so Lonely
 Many people in Chronic Pain feel very alone sometimes, myself included.  There is a big reason for that loneliness, mainly the fact that YOU are the one in pain.  Despite how much we wish our doctors or loved ones could feel our physical pain in order to understand and validate how we feel, there is no device that will allow us to hook our pain receptors up to another person (but we can all hope for that one day).  No one else can feel YOUR pain.

 http://blogs.psychcentral.com/chronic-pain/2013/07/why-pain-is-so-lonely/
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Living with Pain: Don’t Let Pain Define You
  Living with severe pain can be a trigger for depression, a sense of loss of who you are and who you will become, and a belief that you can’t manage your pain or your life. It is true that pain often changes people. You may have lost some of the positive abilities that defined you. These losses are powerful and sad. And coming to grips with them is a process that will likely take some time. People with chronic pain sometimes experience negative thoughts and beliefs about themselves.

 http://goalistics.com/2013/08/living-pain-pain-define/?utm_source=Living+with+Pain%3A+Don%27t+Let+Pain+Define+You&utm_campaign=intimacy&utm_medium=email

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Just for Fun

 You know that it is important to exercise your body but what about your brain?
Measure your Brain Age in 2 minutes by playing some games

http://www.freebrainagegames.com/
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August 3rd, 2013 Daily Newsletter

August 4th, 2013 Daily Newsletter

August 6th, 2013 Daily Newsletter

August 8th, 2013 Daily Newsletter

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This week, at last, I got to see the spinal surgeon regarding my spinal stenosis!  Although spinal surgery is an option for me, I decided that unless pain becomes unbearable I will not go down that road!  Also I had my annual eye test, only to find I have a cataract in my left eye.  Again, no action unless condition worsens!  So life goes on much as usual.

Best of wishes to you all
Stella 

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N.B. I would like to point out to you that the information in my eNews blog is passed on to you mainly from other sources.  Links are given to the original articles. I take no responsibility for their accuracy but freely give them publicity if I think they might be of interest to my readership. 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. Any advice or recommendation of a medical or legal nature should always be discussed with a qualified professional.  I also include various awareness items, benefits issues, as well as general health considerations. Anyone wishing to reproduce any of the included items in printed form should seek permission from the originators.
Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr. who died in May 2011.
This eNews is my personal offering to fibromyalgia sufferers and their carers and is not related to any other organisation or charity.
If you don’t already get reminders when each new eNews is posted, please send an email to fmsstella@gmail.com and you will be added to the emailing list.
I previously sent out emails as FMSSAS eNews. 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 These ceased at the end of November 2012 when I resigned as a trustee. 
This blog commenced on 8th December 2012.

Posted by

FMS eNews 03/08/13

Hello again
We didn't get a flaming June but we sure got a flaming July!  Now the schoolchildren are on holiday, here's hoping some decent weather remains for them to enjoy. I hope that those of you with children will enjoy their company and not find the holidays too tiring.
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WORDz for the WEEK

129. Maybe, in the end, we'll find out that everything mattered.  And we wasted our life thinking nothing mattered.

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From Adrienne Dellwo, your Guide to Fibromyalgia & Chronic Fatigue Syndrome
Adrienne Dellwo
Did you know your medications could make you sensitive to the sun? Mine have. See what common FMS & ME/CFS meds can give you photosensitivity, below.
Also this week, signs of real progress in acceptance for fibromyalgia, and some things to think about now that back-to-school season has crept up on us.
Down in Featured Articles, I've included some great content from your fellow readers.
Take care of yourself!

http://specials.about.com/service/newsletters/chronicfatigue/1374865200.htm
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Sleep is one of the foundations of good health, and yet it's pretty poorly understood in chronic fatigue syndrome. See two reasons some researchers are now recommending routing sleep studies for people who have or may have ME/CFS, below.
Also this week, why some studies looking at exercise in ME/CFS may be flawed, and new findings about acupuncture at fibromyalgia tender points.
Some seasonal information is down in Featured Articles.
Take care of yourself!

http://specials.about.com/service/newsletters/chronicfatigue/1374260400.htm
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The Big Knit
Most readers will be aware of how passionate I am about the therapeutic benefits of knitting.  If you enjoy knitting too you may like to help a good cause.  Innocents Smoothies are sponsoring AgeUK by donating 25p for every bottle hat knitted. They don't take long to make!  

More information here
https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/The_Big_Knit.doc

See also my Facebook page https://www.facebook.com/stella.bernardi1
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An opportunity to participate in Fibro research

Anna Maria Volkmann, a PhD candidate at University College London currently finishing up her thesis (Title: Making Meaning of Contested Illness: Medical Uncertainty and Fibromyalgia Syndrome) and is looking for participants to take part in her survey/research.  
The purpose of the study is to gain a better understanding of how patients experience and deal with their illness. They are interested in how certain beliefs and attitudes shape the experience of Fibromyalgia in individual patients, and how a patient’s view of him or herself may be influenced by this chronic condition. They are also keen to find out how the use of social networking sites (such as Facebook) affects patients’ overall illness experiences and wellbeing. It is not a difficult task, and should only take about 20-40 minutes.
The participant information document and sign-up sheet can be found here

 https://docs.google.com/forms/d/1ChOEtfhmfUsZxI4M_RD0lJ7NUD1VhhQVM8knCubQClM/viewform

 This is somewhat urgent so don't delay!

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Nerve Stimulation Might Ease Fibromyalgia Pain

Small early study saw improvement in patients' quality of life

http://www.webmd.com/fibromyalgia/news/20130610/nerve-stimulation-might-ease-fibromyalgia-pain

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FM Health Check questionnaire

http://www.webmd.com/fibromyalgia/fibromyalgia-health-check/default.htm

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9 Things You Can Do to Avoid Fibromyalgia Pain and Fatigue

http://www.webmd.com/fibromyalgia/fibromyalgia-pain-10/slideshow-pain-fatigue 
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Pati Chandler on Facebook
Pati Chandler
She says "It occurs to me that many of you aren't on facebook, and don't get the benefit of many of the posts I put on my page. I usually put 2 or 3 per day - every day."  Become her friend on Facebook and receive her messages.
Pati is a prolific writer about Fibromyalgia.  Her book "Managing Fibromyalgia"is availabe, as well as much other infomation, on her website

http://www.managing-fibromyalgia.com/

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Test For Fibromyalgia Within Sight: Only A Blood Sample Required

To detect the presence of fibromyalgia in blood-spot samples collected from patients, the scientists used infrared microspectroscopy, a technology that can recognize molecular bonds as they are struck by light. Molecules within the blood samples, then, could be identified as they appeared within the infrared spectrum.


See other articles


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July 26th, 2013 Daily Newsletter

July 27th, 2013 Daily Newsletter

July 28th, 2013 Daily Newsletter

July 29th, 2013 Daily Newsletter

July 30th, 2013 Daily Newsletter

July 31st, 2013 Daily Newsletter

http://www.greenmedinfo.com

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Apologies for the errant dividers, theywouldn't all centre how I wanted them to.

Stella
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N.B. I would like to point out to you that the information in my eNews blog is passed on to you mainly from other sources. 
Links are given to the original articles. I take no responsibility for their accuracy but freely give them publicity if I think they might be of interest to my readership. 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. Any advice or recommendation of a medical or legal nature should always be discussed with a qualified professional.I also include various awareness items, benefits issues, as well as general health considerations. Anyone wishing to reproduce any of the included items in printed form should seek permission from the originators.
Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr. who died in May 2011.
This eNews is my personal offering to fibromyalgia sufferers and their carers and is not related to any other organisation or charity.
If you don’t already get reminders when each new eNews is posted, please send an email to fmsstella@gmail.com and you will be added to the emailing list.
I previously sent out emails as FMSSAS eNews. 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 These ceased at the end of November 2012 when I resigned as a trustee. 


This blog commenced on 8th December 2012.
Posted by

FMS eNews 27/07/13

Hello fibro friends

The world is rejoicing at the birth of George Alexander Louis.  The anticipation was intense, the media coverage possibly a little excessive but all are relieved that Kate, the Duchess of Cambridge was safely delivered of a son, the third in line to the throne of GB and the Commonwealth on Monday 22nd July 2013. The Duke, William said they "could not be happier".  Nothing to do with FM but a momentous occasion, not to go unnoted.   But then my opening and closing comments are usually informal and general in nature!

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WORDz for the WEEK

128. The life given us is short, but the memory of a life well spent is eternal.
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From Adrienne Dellwo, your Guide to Fibromyalgia & Chronic Fatigue Syndrome
Did you know your medications could make you sensitive to the sun? Mine have. See what common FMS & ME/CFS meds can give you photosensitivity, below.

Also this week, signs of real progress in acceptance for fibromyalgia, and some things to think about now that back-to-school season has crept up on us.

Down in Featured Articles, I've included some great content from your fellow readers.

Take care of yourself!

http://specials.about.com/service/newsletters/chronicfatigue/1374865200.htm

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Body Betrayal: How to Cope with Chronic Pain and Illness

“As long as you make an identity for yourself out of pain, you cannot be free f it.” ~Eckhart Tolle
Up until fairly recently, I often felt betrayed by my body. It was always breaking down, leaving me frustrated and bitter.
No one else seemed to have as many problems. I’ve had Juvenile Rheumatoid Arthritis, an inflamed gall bladder riddled with
stones that ended in surgery. Chronic migraines, chronic hives, Chronic Fatigue Syndrome.
Whenever I get sick, it never seems to be something trivial. A cold becomes bronchitis. Hayfever leads to a sinus infection.

Read on
http://tinybuddha.com/blog/body-betrayal-how-to-cope-with-chronic-pain-and-illness/

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Laughter for Pain







I have my bad pain days/phases with fibromyalgia. But come to think of it, those are becoming less and less.  Or at least it feels like that.  I can attribute this to many things which I’ve written about previously: Medicine (namely Pregabalin), healthy eating, and working which forces me to keep somewhat active on a daily basis.  But there’s one thing I’ve not mentioned which has impacted so positively on my levels of pain.
Laughter.

Read on
http://theinvisiblef.com/

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Conquering fibromyalgia with love

Life with fibromyalgia can be inundated with many things, among them fears and anxieties over the future.
It’s not a progressive condition doctors say, but living on a day to day basis can be darn tough. Life, I’d argue, is hardly ‘normal’, and by that I mean how a typically healthy person would live. 
I know it’s not just for people who live with fms but also for others who live with other chronic illnesses.
One particular worry keeps resurfacing and I know many of you will be able to relate.
(Find this and other articles below the above entry). 

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Other articles included:-

  • Can We Justify the Meds?
  • Zyleema the Dreamer
  • Hope for Tomorrow
  • The Magic of Believing & Self Definition - and more!
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PatientsLikeMe Newsletter Issue - July 2013
Open those peepers all you sleepers

We’ve got some really exciting news to share with everyone and we just couldn’t wait.
So far, more than 4,300 of you have 

completed the PatientsLikeMe sleep survey and it’s on track to be the largest of its kind. Woohoo! The survey is still open so we don’t have the results quite yet, but we wanted to give a shout out to everyone who added their voice to the “Are You Sleeping?” initiative.
Know someone that might want to take the survey? There’s still time. Forward this link to your friends and family and they
can add their voice to research too. All they have to do is create a free profile and we’ll send a survey invitation to
their inbox.
http://www.patientslikeme.com/join/areyousleeping
http://www.patientslikeme.com/newsletters/288--Jul-2013

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Do you have Fibromyalgia?
  • What is it like to have Fibromyalgia?
  • What do patients take to treat Fibromyalgia and its symptoms?
  • Who has Fibromyalgia at PatientsLikeMe?

http://www.patientslikeme.com/conditions/8-fibromyalgia?utm_source=facebook&utm_medium=cpc&utm_campaign=fibromyalgia3imagetest


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Fibromyalgia - What Have I Done to Deserve This?

Well, you will be pleased to know you have not done anything to deserve it! 

https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/Forget_Fibro-13.07.24.pdf

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24 July 2013 newsletter

http://www.benefitsandwork.co.uk/news/2329-24-july-2013-newsletter

Latest Welfare Benefits News - some recent articles

http://www.benefitsandwork.co.uk/news

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Folly Pogs Fibromyalgia Research charity.
JUST GOOD FRIENDS - MURDER MOST FOUL
Friday, November 22nd 2013 Chichester Park Hotel

Do you watch the murder mysteries on TV and enjoy good food with great company? If so we think you would enjoy our
JUST GOOD FRIENDS dinner evening with an optional overnight stay. This ideal for those who enjoy a glass of wine or two
and both of you can drink and find the clues in our murder mystery.

https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/MURDER_MOST_FOUL.pdf

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July 19th, 2013 Daily Newsletter



July 21st, 2013 Daily Newsletter

July 23rd, 2013 Daily Newsletter

July 24th, 2013 Daily Newsletter
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We had a wonderful wedding anniversary yesterday. Relatives gathered for an al fresco meal at my sister-in-law's home.  A good time was had by all!!!
Bye for now.  See you next week.
Stella
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N.B. I would like to point out to you that the information in my eNews blog is passed on to you mainly from other sources.
Links are given to the original articles. I take no responsibility for their accuracy but freely give them publicity if I
think they might be of interest to my readership. 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. Any advice or recommendation of a
medical or legal nature should always be discussed with a qualified professional.
I also include various awareness items, benefits issues, as well as general health considerations. Anyone wishing to
reproduce any of the included items in printed form should seek permission from the originators.
Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr. who died in May 2011.
This eNews is my personal offering to fibromyalgia sufferers and their carers and is not related to any other organisation
or charity.
If you don’t already get reminders when each new eNews is posted, please send an email to fmsstella@gmail.com as you will
be added to the emailing list.
I previously sent out emails as FMSSAS eNews. 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 These ceased at the end of November 2012 when I resigned as a trustee.


 This blog commenced on 8th December 2012.
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