Saturday 29 September 2012

FMSSAS eNews 12.09.29



Hello once again
If you are a member of FMSSAS you will be receiving the Trustees’ Newsletter (TN13) today.  Do look out for it and read about all the arrangements for the AGM which have CHANGED.  If you don’t receive it and would like to, please send me an email with the subject AGM/TN13.  To ensure you receive future issues of TN please email membership@fms-sas.co.uk with subject FMSSAS MEMBERSHIP and include your name, postal address & Tel no. in your message.   You will then be entered on the membership database.
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WORDz FOR THE WEEK
89.  You never see the bad days in your photo albums . . .   but it’s those days that get you from one picture to the next
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National Fibromyalgia & Chronic Pain Association
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Fibromyalgia and Chronic Fatigue Syndrome No longer a mystery
One of the best articles to date on FM.  It was sent as an email from Rollins Health Integrative Medicine Center.
‘Imagine being so tired that you can't function. I'm not talking about being pooped at the end of a long day at work or exhausted after a big hike. I mean the kind of tired that prevents working a normal job or the kind of tired that only allows doing a few hours of chores before having to go back to bed from being so wiped out. Normally exercise gives one a bit of energy but not this type of tired - if not careful exercise just makes it worse. ‘
Read the rest of the article here:-
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Getting to the Root of Fibromyalgia
While many researchers are studying blood and urine of fibromyalgia patients to determine if mineral abnormalities exist, one team from Korea is taking a novel approach by going directly to the root of the problem.* Their study of trace elements in hair samples shows fibromyalgia patients have lower levels of important minerals compared to healthy adults.
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Coping Advice - Family Involvement
While only one person in a family may suffer from fibromyalgia the entire family is affected by it. Your family faces a troublesome time while learning to cope with the anxieties, fears and trauma produced by fibromyalgia. Thus, it is essential that the family become part of your therapeutic program. More explicitly, family support is crucial to the successful management of any chronic and painful condition.
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Misleading Label Dangers:  How to Choose High-Quality Supplements and Avoid Cheap and Dangerous  Imitations
National surveys indicate that half of Americans take some kind of dietary supplement, and if you've visited your local drug store (or even grocery store) recently you know that weeding out the good from the bad can seem like a nearly impossible feat.
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Dangers of Root Canalled Teeth
Do you have a chronic degenerative disease? If so, have you been told, "It's all in your head?"
Well, that might not be that far from the truth… the root cause of your illness may be in your mouth.
There is a common dental procedure that nearly every dentist will tell you is completely safe, despite the fact that scientists have been warning of its dangers for more than 100 years.
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Shop for good with Give as you Live.
Give as you Live helps you raise money for Fibromyalgia Support for Surrey and Sussex (FMSSAS) – at no cost to you – every time you shop online. Start raising money today.

1. Visit our website and 'Discover Give as you Live'.
2. Fill in a few quick details and download Give as you Live (This is 100% secure and takes just seconds).
3. Shop online and raise money at no cost to you.
Find out more so every time you shop online you can shop for good.
© Fibromyalgia Support for Surrey and Sussex (FMSSAS). All rights reserved.                                         
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Give  as you Live - Digital Donor Review, help us win £5000
Every day we work hard to make sure donors like you are proud to be a Fibromyalgia Support for Surrey and Sussex (FMSSAS) supporter. We know that your donations are an investment in our work - thank you.
At Fibromyalgia Support for Surrey and Sussex (FMSSAS) we strive to keep our costs low and to make the most of the donations we receive. This is why we are currently looking closely at our online communications.
We know that communicating online can be a more cost effective way to share our latest news and updates, but we need your help in understanding how you would like to hear from us online.
To help get these answers, we have joined the Digital Donor Review 2012. Sponsored by Give as you Live, the survey takes less than 5 minutes to complete and will help us understand how we can communicate with you better.
As an added incentive, when you complete the survey your name will be entered into a draw on the 31st of December for us to win £5,000.
Take the Digital Donor Review now and help us win £5,000.
© Fibromyalgia Support for Surrey and Sussex (FMSSAS). All rights reserved.                             
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Question:  Do I Need Dietary Supplements?
Answer:  Eating a healthy, well-balanced diet should provide you with all of the individual nutrients you need, but if you're diet isn't so good, some of those nutrients might be deficient. For example, a person who hates fruits and vegetables might not get enough vitamin C and someone who refuses to eat dairy products will frequently need extra calcium.  Read more . . .
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Aspartame: Safety Approved in 90 Nations, but Damages the Brain
 More than 90 countries have given the artificial sweetener aspartame the green light to be used in thousands of food and beverage products.1
Two hundred times sweeter than sugar, aspartame allows food manufacturers to produce sweet foods they can market as “low calorie,” “diet,” or sugar-free,” appealing to hundreds of millions of consumers looking to cut sugar from their diets.
No doubt about it, the less sugar you include in your diet, the better. But replacing sugar with aspartame is not the solution, and in fact is likely to be even worse for your health.
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what’s with all the gluten intolerances?? let me explain…
You might have read a column by a former colleague of mine Mia Freedman recently where she questioned people’s food intolerances, specifically gluten, and avoidance of certain foods, specifically sugar. Funnily, I’m both intolerant to gluten and had to quit sugar due to an autoimmune disease.
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going gluten-free? some hiccups you need to know about
Gluten’s got a grimy name just now. I’ve previously outlined my thoughts on going gluten-free (who should, why it’s not a “fad” etc). It’s worth a read if you’re a little unsure about the whole debate. If you’ve already made the move, or have contemplated it, then you might learn a lot from this rundown of the tricky things that might stump you in your tracks along the way.
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MediGuard - Lyrica - monitoring more than 1,500 patients
71% of patients are at least somewhat satisfied with Lyrica.
MediGuard regularly polls our more than 1,500 users taking Lyrica (or similar drugs with the same active ingredient(s)) using the Treatment Satisfaction Questionnaire for Medications (TSQM). This feedback is continuously updated for the benefit of the MediGuard community.
You can check out other medications on this site.  See Savella & Cymbalta which are also used to treat FM.
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I do not know whether I shall be able to compile or send any eNews whilst I am in Spain.  I shall be away from 3rd -25th October, so if you don’t hear from me until after the AGM you will know why.  You may not get any reminders, but I hope I will see a goodly number of you on 27th Oct.  Don’t forget, all details are in TN13.
My fondest greetings 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 22 September 2012

FMSSAS eNews 12.09.22



Hello everyone
Another week; another batch of fibro info.  There is just so much available nowadays that no one should be able to claim ignorance of the condition.  So read, mark learn and inwardly digest!
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WORDz FOR THE WEEK
88.  Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential and ability of turning life around.
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Blue Badge Parking Scheme Changes
The Department for Transport  website explains the new scheme
Its FAQs section says
“If you provide your mobile phone number or e-mail address, reminders can be sent to you at renewal time thought (through?) these routes. Otherwise, you will be sent a letter.”
WSCC do not send a letter at renewal time.  It is up to the individual to apply for a new badge.  But the WSCC website does not tell you this. Their information about blue badges is here http://www.westsussex.gov.uk/leisure/getting_around_west_sussex/parking/disabled_parking/disabled_badge_car_scheme_blu.aspx
The Government site DirectGov explains the scheme here http://www.direct.gov.uk/en/disabledpeople/motoringandtransport/dg_4001061
As far as I can see none of the county websites tell you whether or not renewal notices are being sent out.  If your blue badge expires soon, apply to your local authority to avoid being fined for having an outdated badge.
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Supplements Quiz for Fibromyalgia & Chronic Fatigue Syndrome
How well do you know your supplements? More and more, they're being viewed as important treatment options for those of us with fibromyalgia and chronic fatigue syndrome.
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Treating One Area Can Reduce Overall Fibromyalgia Pain
Can treating your most troublesome shoulder muscle lead to a significant drop in your overall fibromyalgia pain? Yes, according to a study published online this month in the European Journal of Pain, and the same results were found for treatment of just one painful joint.
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Fibromyalgia Causes
Investigators are constantly looking at various explanations for the occurrence of fibromyalgia. Some, for example, are exploring hormonal disturbances and chemical imbalances that affect nerve signaling. Other experts believe fibromyalgia with its deep muscle pain is linked to stress, illness, or trauma. Still others think there is a hereditary cause or say there is no explanation at all. But while there is no clear consensus about what causes fibromyalgia, most researchers believe fibromyalgia results not from a single event but from a combination of many physical and emotional stressors.
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Fibromyalgia – Highlights - Causes
Using brain scans on patients with fibromyalgia, researchers have discovered an abnormal increase in blood flow (called "brain perfusion") in an area of the brain that discriminates the intensity of pain, and a decrease in blood flow in areas thought to be involved in the emotional response to pain. These abnormalities were unrelated to the patients' depression and anxiety levels, reinforcing the idea that fibromyalgia is a real disorder, rather than a result of depression.
http://adam.about.net/reports/Fibromyalgia.htm A long comprehensive article which is most informative.
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Is Fibromyalgia hereditary?
Fibromyalgia isn't passed directly from parents to children the way diseases such as cystic fibrosis and hemophilia are. But family studies have found that the odds of having fibromyalgia are several times higher in the immediate families of people with fibromyalgia than in families in which no one has fibromyalgia. These observations suggest that heredity is a factor in causing fibromyalgia.
Based on research, the current belief is that fibromyalgia is not hereditary in the classical sense, where a mutation is responsible for a given trait (monogenic), like with blue eye color; however, evidence does suggest that your genes can predispose you to fibromyalgia, but in a complex way involving many genes (polygenic).
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Feeling Like You’ve Been Hit by a Mack Truck: Mornings With Fibromyalgia
What does it feel like to be run over by a Mack truck? Thankfully, actual occurrences are few. When I first developed pain, and long before I heard of fibromyalgia, I used Mack Truck metaphors for my own experience. Having grown up near the company’s headquarters, I may have been quicker than average to make this this association.  Yet, when I was finally diagnosed and began reading about people’s experiences with fibromyalgia and related pain syndromes, I found such references were rampant.  
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http://www.dailymail.co.uk/health/article-2203735/Fibromyalgia-Neurological-condition-causing-numbness-insomnia-pain-fatigue-1-8m-Britons.html
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Earth Clinic Newsletter, Sept 17th
If you care about what you eat, this is one for you.
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Cold Survival With Fibromyalgia & Chronic Fatigue Syndrome - Stop Getting Chilled!
A common symptom of fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) is cold sensitivity, which can make the winter months a real battle for us. With a little planning, though, you may be able to alleviate the worst of what cold weather means for your illness.
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Living with Pain: Build Positive Emotion
There is an important  link between negative emotion and chronic pain. Depression, anger, anxiety, sadness, loneliness, and fear can make pain worse and harder to manage. Simply inducing a bad mood in the laboratory is linked to higher reports of pain and reduced pain tolerance.  But, how do positive emotions impact pain?
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Snuggle Up With the Perfect Pillow
Expert advice on how to find the pillow that suits your sleep style.
Nothing starts your day off better than getting a good night's sleep. And sleeping with the right pillow can help.
"Pillows can not only impact the quality of our sleep, but also how healthfully we rest and recharge," says sleep expert Michael Breus, PhD, a clinical psychologist and author of Beauty Sleep: Look Younger, Lose Weight, and Feel Great Through Better Sleep.
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Things Not to Say to Someone With Fibromyalgia or Chronic Fatigue Syndrome  ...  And what we'd like to hear instead.
When someone we know is sick, especially with a chronic illness, it can be hard to know what to say to them. Often, people want to appear understanding, sympathetic or helpful—only to come off hurting the feelings of the sick person.
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 Is There a Better Time to Nap?
Sleep can be unrefreshing and the fatigue of fibromyalgia can make getting through the day difficult. One way to help you along might be to take a nap, even if you can only manage it on the weekends. But when you wake up from a daytime nap, you want to minimize the sluggish, mentally slow feeling that may greet you (as though your brain has not snapped out of sleep). So, the question is: should you take the nap in the morning or the afternoon?
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Win £5,000 for FMSSAS
At Fibromyalgia Support for Surrey and Sussex (FMSSAS) we want to keep our communication costs low and make sure you always feel connected to the work your generous donations help us to accomplish.
In just 5 minutes you can help us understand how we can communicate with you better online and enter us for the chance of winning £5,000.
The draw for £5,000 will take place on the 31 December, and the winner will be notified via email.
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Essential Research Project on Fibromyalgia
An email received and passed on to you here:-
“I am currently a BSC Psychology student at the University of Buckingham carrying out a research on the effect of activity on fibromyalgia and possible ways of improving symptoms of this condition. For this purpose I am looking for patients with fibromyalgia who would be interested to take part in a 10-day research study. The findings might help improve symptoms of fibromyalgia and help patients develop coping strategies that will have an impact on their overall wellbeing.
Every participant will help to increase the knowledge of fibromyalgia and therefore help to provide a better understanding of ways to treat fibromyalgia and its symptoms.
Therefore I would kindly ask you to consider this research for members of your support group. For additional information please see the enclosed document with details about the study.
I would very much appreciate if you could get back to me as soon as possible.
Thank you for your time!
Kind regards,
ALENA MEISTER 1101490@buckingham.ac.uk
Volunteers please contact Alena direct.
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I hope to send an eNews next week (if I’m not too busy), then there will be a break because I shall be away for most of October.  I’ll be back for the AGM, but only just.  Looking forward to seeing lots of you then.
Best regards 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/
FMSSAS website is www.fms-sas.co.uk




Saturday 15 September 2012

FMSSAS eNews 12.09.15


Hello my fibro friends
What a lovely morning!  Late summer I suppose it could be called.  Late is sometimes good, but sometimes late is TOO LATE.  As you will see below there has been little response to the wonderful seminar the trustees had planned for 27th October.  It will have to be cancelled if there is not enough support, and the AGM rescheduled to a different venue.  I will keep you informed.
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WORDz FOR THE WEEK
87.  Life is not measured in minutes but by moments.
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Visit to Wiston TeaRooms, Sat 15th September
Join the meet-up of fibro folk and friends at 2pm TODAY.  Members from Brighton, Horsham and Worthing groups are expected to attend but you don’t have to be a member of a group to come along.  For more info:
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I am disappointed!
Why is it that nobody responds to requests and invitations?  Only 2 people have booked for the Seminar Day on 27th October.  This has been arranged FOR YOUR BENEFIT.  It will sadly have to be cancelled if there are not enough bookings in this coming week.
To remind you – the information about it is here www.fms-sas.co.uk/PDF/LDF.pdf
And the booking form is here www.fms-sas.co.uk/docs/BookingForm12.10.27.doc
Neither has anyone attempted to guess the number of blanket squares that have been knitted!  Just a bit of fun that will benefit your charity – and you could be a winner.
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Spend and Raise
Thanks - the more you buy, the more we earn!  You can help us to raise valuable funds today by shopping online – and you won’t spend any more than going to the retailer’s website directly.  In fact, if you visit the ‘Today’s offers’ tab, chances are you’ll even save money.
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Overlap: Inflammatory Back Pain & Fibromyalgia
New research shows a significant overlap between fibromyalgia tender points and inflammatory sites associated with back pain in spondyloarthropathies (SpA), which are joint diseases of the spinal column.
In SpA, the inflammatory sites are called enthesitis. They're right where your tendons and ligaments attach to bone.
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Cope With Stress and Become More Resilient
Emotional resilience is partially inborn, but it can (and should) be learned and developed. If you’d like to be able to handle life’s challenges (both major and minor) with greater ease, to grow from adversity, and to turn potentially negative events into positive ones, the following steps can help you to become more resilient to stress.
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Avoiding Distractions With Fibromyalgia & Chronic Fatigue Syndrome
When you have cognitive dysfunction along with your fibromyalgia and chronic fatigue syndrome, distractions can be a big problem. It can be hard enough for us to follow our trains of thought, and a distraction can derail us completely.
Being distracted isn't just an annoyance and possibly embarrassing. It can also make our brain fog worse, and sometimes it can really increase our anxiety.
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Morning Stiffness in Fibromyalgia
“When clinicians are asked which symptoms are the most debilitating in patients with fibromyalgia, the most common responses include pain, fatigue, and sleep disturbances,” states lead author of a recent study by Robert Bennett, M.D., of Oregon Health and Science University in Portland.1 He also adds patients report stiffness as an important symptom. And who wouldn’t complain about waking up each morning to a body that feels in the final stages of rigor mortis?
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Muscle Relaxants: Do they work for fibromyalgia?
Your muscles are tight and achy. You may even feel ropy bands with firm knots in the mid-section of the muscle. These are myofascial trigger points, and their location often overlaps with the 18 tender points used for diagnosing fibromyalgia. Just pressing on them can send your pain through the roof. But can muscle relaxants ease the tension in your muscles and help untie (or at least loosen) your painful knots?
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Fibromyalgia: Creating a Treatment Plan
Fibromyalgia is a complicated medical disorder. It has no specific causes and no known cure. Yet for those who have it -- as many as one in 50 Americans -- the chronic pain, fatigue, and psychological strain of fibromyalgia are all too clear.
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Fibromyalgia Exercise, One Step at a Time
When Lynne Matallana was first diagnosed with fibromyalgia, she spent most of her time in bed. Then her doctor suggested she get some exercise.
“I knew I’d have to start really slowly, so I started exercising while I was still in bed,” says Matallana, president and founder of the National Fibromyalgia Association. “I’d do some stretching for about half an hour and then take a rest.”
Gradually she worked up to walking to the mailbox and back, and then to more steady exercise on a treadmill. Today, she credits exercise with playing a big role in improving her fibromyalgia pain.
This step-by-step plan can get you started on your own exercise program for fibromyalgia.
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More Fibromyalgic Graphics
Thank you Emma
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Fibro TV Graphics Contest
Are you artistic and want to win a little $$$ching ching? FibroTV is holding a graphic contest. You see our pictures with quotes everyday and we want  YOU to be a part of the positivity here at FibroTV. So put on your creativity hat and have some fun!
Go here to find out more
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Because they are responsible for DWP assessments
If you disagree with the methods of assessment please sign the petition.  5,000,000 signatures are needed.  When I signed it there were less than 2,000 signatures si iy has a long way to go.  The link is embedded in the header, as well as below.
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Are you sitting comfortably?
Watch this video for hot tips
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The Challenges of Living with Invisible Pain or Illness
Caregivers and those they care for often live in an invisible world.
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Tips for Coping With Caregiver Stress
Sometimes, the pressure of caring for someone who is elderly or who has a chronic illness can lead to stress and a condition called "caregiver burnout." To prevent this, it's essential to know how to manage your caregiver stress.
What Is Caregiver Stress?
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Dietary ‘excitotoxins’ linked with fibromyalgia and irritable bowel syndrome
A lot of conventional medicine is about symptom suppression. For example, with someone with ‘cramping’ in the gut we may give a drug to reduce the cramping. A better (I think) though more alternative approach would be to attempt to find out what’s causing the cramping and sort that out. As an aside, cramping in the gut and ‘irritable bowel syndrome’ is very often caused by food sensitivity in my experience, and wheat and perhaps other grains are common culprits.
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Is Herpes Virus Connected to Fibromyalgia?
Alabama researchers have announced that they're launching a study on two antivirals as possible fibromyalgia treatments, based on their hypothesis that the condition may be linked to herpes simplex 1.
This particular herpes virus causes cold sores. Researcher William Pridgen, MD, says he began suspecting viral involvement because of the way symptoms wax and wane, which is typical of certain viruses. Once he began prescribing drugs known to be effective against herpes simplex 1, he says 90% of his patients got better.
Pridgen says, in his practice, he's seen improvements in gastrointestinal problems, fatigue, anxiety, energy levels, depression and other fibromyalgia symptoms.
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Optimum Health Clinic
Newsletter 13th Sept.
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Brain Fog in Chronic Fatigue Syndrome and Fibromyalgia
Brain fog is a classic part of chronic fatigue syndrome and fibromyalgia, presenting as:
Horrible short-term memory, Difficulty with word finding and word substitution (e.g., substituting the word "fork" for "knife"), and Occasional disorientation — Approximately 30 percent of those with CFS or fibromyalgia have episodic disorientation lasting around 30-60 seconds. This often occurs when driving or even turning down a supermarket aisle. It can feel scary, but is not dangerous. Though you may not know where you are (or are going) people seem able to drive or walk safely till it passes. This can also manifest as briefly not recognizing common objects or names (even of children).
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Sleep Problems Triple Women's Fibromyalgia Risk
Women plagued by sleep problems have more than triple the risk of developing the pain disorder fibromyalgia compared to their better-rested peers, a new study from Norway suggests.
The more often a woman experienced insomnia and other sleep problems, the more likely she was to have developed fibromyalgia 10 years later, according to the study, the largest to date to follow women who were initially free from chronic pain.
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That all for now – ‘more than enough’ did I hear you say?  At least ‘more’ offers choice. 
Have a great day and a fruitful weekend.
Best regards
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