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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.

FMS eNews 20/07/13

Hello
Well, here I am again.  It was a glorious break from normality, down in Somerset.  Not that the weather wasn't glorious everywhere in the UK, and has been for nearly three weeks.  Some find it too hot, but after the atrocious winter, excessive rain and dismal outlook, the warmer weather has been, at least for me, very uplifting.

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WORDz for the WEEK

127.  The time that you enjoy wasting is not wasted time.

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 From Adrienne Dellwo, your Guide to Fibromyalgia & Chronic Fatigue Syndrome

You know how those of us with fibromyalgia tend to have really sensitive hands and feet, especially when it comes to temperature? Scientist may have discovered why. Read about that below, and make sure to check out the comment left by the senior researcher.
Also this week, a look at how your habits - good and bad - can impact your quality of life, and some help getting through the torturously hot summer months.
Down in Featured Articles, you can learn all about different types of drugs doctors frequently prescribe for us.
Take care of yourself!

http://specials.about.com/service/newsletters/chronicfatigue/1373050800.htm

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From Adrienne Dellwo, your Guide to Fibromyalgia & Chronic Fatigue Syndrome

When you have a disabling illness, you get judged. When you have a poorly understood illness, you get judged.
The last people who should be doing the judging are our fellow sick people - and yet, some of them do it. See what I have to say about that, below.
Also this week, an interesting new hypothesis about infectious agents and the cause of ME/CFS, and surviving dental appointments with these illnesses.
You'll find lots of information on overlapping pain conditions down in Featured Articles.
Take care of yourself!

http://specials.about.com/service/newsletters/chronicfatigue/1373655600.htm

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   Forget Fibroyalgia - Recent Blog Posts

        Effects of caffeinated drinks on fibromyalgia symptoms
        Fibromyalgia Self Help Techniques, reducing negative media impact
        Fibromyalgia self help techniques, give yourself a clutter free place to relax
        Fibromyalgia Self Help Techniques – Weight Control
        Fibromyalgia Self Help Techniques – Effects of Alcohol

http://www.forgetfibromyalgia.com/products.html

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Manage Fibromyalgia: How Meditation and Hypnosis Can Help

Hi
I hope you're feeling good today ...
Why is hypnosis and meditation so powerful in helping people with fibromyalgia to overcome their symptoms? This is a question I am often asked.
Meditation and hypnosis enable you to achieve a state of deep relaxation, which is an important part of a healthy lifestyle. More importantly, when you are deeply relaxed your negative inner critic shuts up. I used these deeply relaxed states achieved through meditation and hypnosis to reprogramme my thinking and behaviour. . . . .

Read more:-
https://www.dropbox.com/home/eNews/FMS%20eNews?select=Forget_Fibro_13.07.10.pdf

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Has Fibromyalgia Affected Your Self-Esteem?

Hi
When you are suffering from a long-term health problem your self-esteem can be adversely affected, which in turn can make managing your condition even more difficult.  Having great self-esteem means you can manage challenges with more ease, and life becomes more enjoyable. . . . .

Read  more:-
https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/Forget_Fibro-self_esteem.pdf

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A Parliamentary Briefing from the Prescription Charges Coalition
Prescription Charges and People with Long-Term Conditions

About The Prescription Charges Coalition
The Prescription Charges Coalition is an alliance of 28 organisations concerned with the detrimental impact that prescription charges are having on people with long-term conditions in England.  Following a survey of nearly 4,000 people with long-term conditions, the evidence-based report Paying the Price was published in March 2013.  Over 3,000 people have since contacted their MPs on this issue.
 Read more . . . .

https://docs.google.com/file/d/0B2x15mhmsw-bS2tVY3dHZUpoWGM/edit

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Better sleep, naturally

The world looks very different at 3 a.m. when you’re lying in bed staring at the ceiling or the clock. “How will I make it through tomorrow without any sleep?” you worry. If you regularly can’t get to sleep — or stay asleep — and it’s affecting you during the day, then you may have insomnia.

Read more . . .
http://view.mail.health.harvard.edu/?
j=fe6117707d62037d7617&m=febb15747d630d7a&ls=fdbf157373650279701d707262&l=fe57157677630c7b7217&s=fdf31576706505787c12717c&jb=ffcf14&ju=fe29177673620c7c751775&r=0

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UK Fibromyalgia July Newsletter.

Lots of fascinating articles as suggested reading.

http://ymlp.com/zRCXEv

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Latest Newsletter from Cort Johnson

http://mad.ly/5b44a3?pact=477597388843460398&fe=1

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The Fibromyalgia Drugs Your Doctor (Probably) Knows Nothing About

Fibromyalgia syndrome – Novel therapeutic agents. J. Ablin and D. Buskila. Maturitas 2013
“The long term follow-up of FMS patients indicates…..that the degree of improvement achieved by many medications…is modest at best” Ablin and Buskia
Affecting 2-3% of the population of the US or about 8,000,000 people in the US fibromyalgia’s impact is huge yet physician ignorance is high, with many doctors restricting their drug prescriptions to the three drugs the FDA has approved for fibromyalgia.

Read more: . . . . . .
http://www.cortjohnson.org/blog/2013/07/13/the-fibromyalgia-drugs-your-doctor-probably-knows-nothing-about/

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 FMSSAS has a new Website


The one I managed for 8 years, www.fms-sas.co.uk, is staying as an archive.  The new website, still under construction, is

www.fms-sas.org.uk

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MECFRA News No. 3

Welcome to the third issue of THE M.E, CFS and Fibromyalgia Recovery Association Newsletter.
We are so excited about what the next 12 months has to offer for the Recovery Association. We have started so many amazing things so far this year which is spreading the word about recovery. Our Wellbeing Gatherings have already raised over £300 look out in the events section so you can ensure you attend the next one. 


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Chronic Pain Can be Lonely: Nine Ways to Reconnect

Chronic pain can make it hard to feel connected to others. Pain puts a strain on friendship – whether
you have fibromyalgia, headaches, back pain, arthritis, or any other type of chronic pain. You may have found that you see friends less or that you feel disconnected when you do get together. You may have lost touch with some friends who you feel are too active – you may believe you just can’t keep up. You may feel that some of your friends just don’t understand what you are experiencing and that some are even downright insensitive. Chronic pain can be lonely.

Read more . . . . . .
http://goalistics.com/2013/07/living-pain-ways-reconnect/?utm_source=Chronic+Pain+Can+Be+Lonely%3A+Nine+Ways+to+Reconnect&utm_campaign=intimacy&utm_medium=email

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July 9th, 2013 Daily Newsletter

July 11th, 2013 Daily Newsletter

July 13th, 2013 Daily Newsletter

July 14th, 2013 Daily Newsletter

July 15th, 2013 Daily Newsletter

July 17th, 2013 Daily Newsletter

July 18th, 2013 Daily Newsletter

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 Next Friday is my husband's and my 55th wedding anniversry - half-way between Golden and Diamond, but apparently known as Emerald.  Think GREEN on Friday!!  This photo was taken for our 50th.

Best 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 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.



FMS eNews 06/07/13


Hi
Next week I shall be away, visiting my other daughter in Somerset so I won't be able to produce an eNews for you. The next one should be available on 20th July.  So, I'll see you all again then, metaphorically speaking.  I am editing this issue in a different way, so as I write, it remains to be seen how it will turn out.  Fingers crossed!!

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WORDz for the WEEK

126.  Life is like a ten-speed bike, most of us have gears we never use.

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The brand new fourth edition of the Rough Guide toAccessible Britain is now available to view for free via the Zinio online reader New window icon. It’s packed with over 200 inspiring ideas for fantastic worry-free days out with reviews, hints and tips on some of the UK’s best attractions written by and for disabled people.

Geared for 2012 but much is still relevant.

http://www.accessibleguide.co.uk/the-guide.html?utm_source=facebook&utm_medium=cpc&utm_campaign=accessible
+guide&utm_content=image2

http://gb.zinio.com/reader.jsp?issue=416213940&o=ext&WT.mc_id=PUB_WWW_Free_USA_32712_Rough_Guide_To_Accessible_Britain_2012
(link takes a while to download)

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Acceptance = Strength - GO TIGERS!!!

A few weeks ago it was our towns Homecoming week. Our 7th grader is in the marching band for the first year (and most likely the last). We live in Northern Wisconsin and the weather had turned cold. The high of the day was 43 degrees. By the time the game had started the temperature was 32 with high winds making the temperature below zero with the wind chill.
I have never been a winter baby. I hate the cold. I have a harder time dealing with it now. . . . .

Read the rest of this moving story.
http://fighterzblog.wordpress.com/2013/06/29/acceptance-strength/

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16 Best Fibromyalgia Blogs of 2013


Whether you suffer from it yourself or know someone who does, these blogs open a world of camaraderie and self-discovery that will leave you feeling more in control of Fibromyalgia.
Fibromyalgia can affect sufferers’ lives on many levels, from fatigue and sleep, to memory and mood, and widespread musculoskeletal pain experienced as “tender points” throughout the body. Yet because fibromyalgia is an “invisible disease,” it’s often misunderstood by others, including many in the healthcare community.
To help ease the burden, many bloggers devote their time to creating online diaries about their experience. These blogs provide a sense of community and allow sufferers to share support and strategies with others who have fibromyalgia and their loved ones.
Click through the slideshow to discover the Best Fibromyalgia Blogs of 2013.

http://www.healthline.com/health-slideshow/best-fibromyalgia-blogs#7

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Fibromyalgia Treatments

There is no cure for fibromyalgia, so treatments seek to decrease pain, improve muscle and joint function, and help patients avoid situations that can worsen their symptoms.

Read about Fibromyalgia Drugs, Lifestyle Changes, Psychological Counseling and Physical & Occupational Therapy.

http://www.healthline.com/health/fibromyalgia-treatments

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Treatment Search - 36 Treatments for Fibromyalgia

 Tests,  Medical Procedures, Prescribed Medications, Over the Counter Medications, Self Care, Herbs and Supplements, Alternative Procedures

http://www.healthline.com/treatments/fibromyalgia__?nav=bwid

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Chronic Comic by Purple Law Lady


Things can change!

See full size Comic
http://fibromodem.com/?p=10922

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Is the Stress of Everyday Life Causing Your Fibro Flare-ups?

Rebecca Richmond's latest Newsletter.

https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/Forget%20Fibro.pdf

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Your Connection to Healthy Living!

Epidural Steroid Injections Increase Spinal Fracture Risk
http://spinalstenosis.org/blog/epidural-steroid-injections-increase-spinal-fracture-risk/

Stem Cell-Destroying Virus Used to Fight Breast Cancer
http://stemcelltreatments.org/stem-cell-destroying-virus-used-to-fight-breast-cancer/

Increasing Neck Pain, Low Libido, Weight Gain – Maybe Your Opioid Medication Is to Blame?
http://www.painneck.com/blog/increasing-neck-pain-libido-weight-gain-opioid-medication-blame/

Using Music for Pain Relief: Could Brahms be a Balm to Your Back Pain
http://spinalstenosis.org/blog/music-pain-relief-brahms-balm-pain/

and more . . .
http://healthybodynetwork.com/

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Fibro Flares

Blog of One Girls Daily Struggle With Fibromyalgia

http://fibroflares.wordpress.com/

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Fibromyalgia and Irritable Bowel Syndrome - Exploring the possible connection between the two conditions.

Are irritable bowel syndrome and fibromyalgia connected? It's a question many people with these chronic conditions are asking. . . . . . Irritable bowel syndrome (IBS) is a disorder that involves abdominal pain, cramping, bloating, as well as changes in bowel movements - constipation or diarrhea, or alternation of both. People with IBS often experience anxiety and depression.

http://www.webmd.com/fibromyalgia/features/fibromyalgia-and-irritable_bowel-syndrome?ecd=wnl_fib_070213&ctr=wnl-fib-070213_ld-stry&mb=

Tools & Resources



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Quiz: How Much Do You Know About Alternative Fibromyalgia Treatments?

1. What percentage of people with fibromyalgia use some form of complementary or alternative treatment?
2. Scientific studies suggest people with fibromyalgia may benefit from: ????

Do the whole quiz and test your knowledge - and learn from your mistakes!!

http://www.webmd.com/fibromyalgia/rm-quiz-alternative-fibromyalgia-treatments

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Find a Vitamin or Supplement - RIBOSE

Ribose is a kind of sugar that is produced by the body. It is used as a medicine.
Ribose is used to improve athletic performance and the ability to exercise by boosting muscle energy. It has also been used to improve symptoms of chronic fatigue syndrome (CFS), fibromyalgia, and coronary artery disease. Ribose has been used to prevent symptoms such as cramping, pain, and stiffness after exercise in people with an inherited disorder called myoadenylate deaminase deficiency (MAD) or AMP deaminase deficiency (AMPD deficiency). Ribose has also been used to improve exercise ability in people with another inherited disorder called McArdle's disease.

Read more, including Uses, Side Effects, Interactions and Dosing.
http://www.webmd.com/vitamins-supplements/ingredientmono-827-RIBOSE.aspx?activeIngredientId=827&activeIngredientName=RIBOSE

Here are some suppliers:-
http://www.amazon.co.uk/DELUXE-NUTRITION-D-RIBOSE-POWDER-PHARMACEUTICAL/dp/B004417E2I

http://www.amazon.com/health-personal-care/dp/B000MLAO4Y

http://www.myprotein.com/sports-nutrition/d-ribose-powder/10529373.html

http://www.bulkpowders.co.uk/d-ribose.html

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Fantastic New Android App for Fibromyalgia - The FibroMapp

"50% of the net profit of the sale of this app will go to UK Fibromyalgia where it will be used to support UK based support groups. . . . . . . . . As Fibromyalgia is unique to each person, so is UKFibroMapp! It can be completely personalised to your needs and requirements and takes into account that there are over 100 different conditions and symptoms within FM.
UKFibroMapp has been designed BY people with Fibromyalgia FOR people with Fibromyalgia. . . . More . . .


https://play.google.com/store/apps/details?id=co.uk.ukfibromapp#?t=W251bGwsMSwyLDIxMiwiY28udWsudWtmaWJyb21hcHAiXQ

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June 30th, 2013 Daily Newsletter
http://us1.campaign-archive2.com/?u=7f494613c5ad4db1b93e647ad&id=078dd0a694&e=3a786b8cc1

July 1st, 2013 Daily Newsletter
http://us1.campaign-archive2.com/?u=7f494613c5ad4db1b93e647ad&id=bfcccb98e2&e=3a786b8cc1

July 3rd, 2013 Daily Newsletter
http://us1.campaign-archive2.com/?u=7f494613c5ad4db1b93e647ad&id=1426a51366&e=3a786b8cc1

July 4th, 2013 Daily Newsletter
http://us1.campaign-archive2.com/?u=7f494613c5ad4db1b93e647ad&id=9a69b628cb&e=3a786b8cc1

July 5th, 2013 Daily Newsletter
http://us1.campaign-archive1.com/?u=7f494613c5ad4db1b93e647ad&id=f6241db882&e=3a786b8cc1

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No time for more this week!   Hope there is enough to keep you going for two weeks!
I wish you well
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.