Saturday, 4 February 2012

FMSSAS eNews 12.02.04


Greetings to you all
I hope you are not all frozen to death!  It has been sooooooooo cold this week, even though the sun has shown great bravery in shining.  Sharp short walks are probably what the doctor would order, but you will be forgiven if you huddle over your computer, snuggle up in a warm blanket and do your weekly reading re fibro.
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WORDz FOR THE WEEK
56.  Hatred paralyzes life; love releases it.  Hatred confuses life; love harmonizes it.  Hatred darkens life; love illumines it.
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Kelly’s Kontributions
From Listserv
Effect of pregabalin on sleep in patients with fibromyalgia and sleep maintenance disturbance: A randomized, placebo-controlled, 2-way crossover polysomnography study.
The Effects of Fibromyalgia Syndrome on Female Sexuality: A Controlled Study
Functional capacity, muscle strength and falls in women with fibromyalgia.
MALDI-TOF and SELDI-TOF analysis: "tandem" techniques to identify potential biomarker in fibromyalgia.
Vitamin D Deficiency in Women with Fibromyalgia in Saudi Arabia.
 “Governed by the pain”: Narratives of fibro myalgia
Webinar: "Fibromyalgia: Current Understanding & Integrative  Nutritional Approaches" by Alex Vasquez, D.C., N.D., D.O.
From CFIDS & Fibromyalgia Self Help
1) "Willpower in CFS & FM"
Recent research suggests willpower is like a muscle, strengthened by use.
Here are six ways to increase your sense of control.
2) "My Energy Bank Account"
How a simple pacing strategy allowed one person to reduce her symptoms and
gain control of her life.
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FM Conference 2012, Chichester 6th-9th April
FAQ answered 4 U
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FMSSAS Membership renewal
Those of you who have been on our membership list, who receive the Trustees’ Newsletters and are eligible to vote at AGMs have recently been circulated, by email, or by post if they have no email address.  The membership list is being renewed and members have been invited to respond by emailing membership@fms-sas.co.uk  If you were one of them and you haven’t responded please do so if you wish to remain as a member.  If there is anyone who is not a member but would like to be, please also respond.  The renewal notice is here
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Independent Living Association Workshops
The Independent Living Association is holding two workshops across West Sussex which will contribute towards developing a new disability strategy under this Government. This is a fantastic opportunity to share your views and tell us about what is important to you. The events take place in Crawley on Wednesday 15 February and Bognor Regis on Wednesday 22 February. For more information see details
and poster
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MANAGING FIBROMYALGIA - the top seven most important supplements
Including Malic Acid and Energy
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Diary of a Benefit Scrounger
A site to share information on Welfare cuts, illness, disability and general, current, political thought.
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American Pain Foundation
Growing membership is vital to creating a powerful movement and improving the lives of people living with pain. We need your help! This month’s Action of the Month is to ask five people you know to join APF.
I’m inviting over 350!
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Drugs.com
This is the most popular, comprehensive and up-to-date source of drug information online. Providing free, peer-reviewed, accurate and independent data on more than 24,000 prescription drugs, over-the-counter medicines & natural products. Find helpful tools, wallet size personal medication records, mobile applications and more.
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Chronic Pain Policy Coalition
A report of the Pain Summit 2011
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Preventing Fibromyalgia Pain - By Karen Lee Richards
I don't want the title to mislead you.  There's no foolproof way to prevent all pain when you have fibromyalgia.  But understanding how the FM pain cycle works can enable you to lessen the pain much of the time and even prevent some pain altogether. 
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Study Shows How Stress Triggers Immune System
Shedding some light on why stress might be bad for you, a new study finds that parts of your immune system ramp up when you get into personal conflicts with others.
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Fibromyalgia and Alcohol Don't Mix
Alcohol intolerance is a feature of both fibromyalgia and chronic fatigue syndrome (ME/CFS) that we rarely see in symptoms lists. Yet most people who have FM or ME/CFS find that they can no longer drink much, if any, alcohol.
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Relieving Persistent Pain, Improving Health Outcomes
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Fibro in Tonbridge – Newsletter Jan-Feb
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You can take a rest now!  There’s plenty to get your teeth into this week.  Remember ‘Knowledge is Power’ but you only get the knowledge by studying.
Have a great week
Keep warm, keep good, and keep smiling!
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, 28 January 2012


Hi there,
I hope you have had a good week.  I went for my post operative appointment at the Horder Centre this week. All appears to be well.  I won’t have to go there again until another joint needs servicing!
Just to remind you that on this blog you can interact by making comments, become a follower and check out any of the previous blogs back to March last year.
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WORDz FOR THE WEEK
55.  A moment, a single moment of true joy is more powerful than a lifetime of sorrow. 
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ME/CFS Community
Links to a variety of articles and videos about ME/CFS/FM.
·         How Old Viruses May Haunt Us
·         The Time to Innovate is Now
·         Europe's Failing Health
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Community Care
Vitalise: providing respite care solutions for people with disabilities and carers
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Give as you live – Great offers
This is the web version of the email I received.  It includes how to download the app that makes it work on your computer.
 It tells me that I have raised £34.30 for FMSSAS.  You could do the same – or more.  I think most of that was through the Everyclick search engine.  Are you using that yet?   Please do.  Other search engines don’t pay us anything.   Everyclick does.  You can save the everyclick search  page as a favourite/bookmark/homepage or you can access it from any page on our website.  Click on the Search button at the top of any page.  Which takes you here http://www.everyclick.com/fibromyalgia-support-group-for-surrey-and-sussex/388122/0/search
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Here’s another moneyraiser – Shop2Fundraise
We are now using shop2fundraise.co.uk to raise extra funds, which means that if you shop online you could help us raise funds and it won't cost you a penny more, in fact it can help you save money. You won't even need to register and with over 1000 online shops to deal with there is plenty of choice (including major brands like Amazon, M&S, Sainsbury's and Boots) for more information and to help with fundraising simply click here http://www.shop2fundraise.co.uk/charity/Fibromyalgia+Support++for+Surrey+and+Sussex-407099
Here are other links to get you started.  Please do it.  It won’t take long to set up and you can start raising funds as soon as you start shopping on-line.  Everything is explained on the site.
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American Pain Foundation - PAIN MONITOR - January 2012
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Patients Like Me Community
Set up your medical profile and find kindred spirits.
The Fork Theory
But you need to know the Spoon Theory too!
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Tired all the Time? Eight Medical Issues to be Aware Of
Do you feel  tired to the point that it interferes with your daily life? This type of overwhelming and chronic fatigue interferes with your ability to enjoy life and feel productive, but why does it happen?
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Smile! The Remarkable Personal Benefits of Smiling
Learn why research says smiling is "like eating 2000 chocolate bars," how smiling is clinically proven to help you fight illness, and why another study found that the intensity of a woman's smile can predict her marital success! Get a few smiles from the three (clean!) jokes while you're at it.
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WebMD Expert Insider
Are You Getting the Care You Deserve?
What "chronic" really means is "forever." The first step to coming to grips with this realization is that life will go on in tandem with your disease.
The second is to dig in your feet, speak up, and take a stand to get what you need from your family, friends, and especially your medical support team.
Read more, and tell others about your challenges and successes.

More Blogs You Don't Want to Miss
Why You Need a Team to Call Your Own
Overcome Your Fear, Conquer Your Pain
Caregiving: What Does It Really Mean?
Finding the 'Good' in Cancer
Are You Sure You Want to Read Your Doctor's Notes?
It's Never Too Late to Take Charge of Your Diet
The Fine Art of Giving (and Receiving) Feedback
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Personalized Fibromyalgia Care
You may have pain all over, but not every person with fibromyalgia has the same set of symptoms. Effect treatment of your condition requires your healthcare team to individualize your care. Your specific symptoms must be addressed rather than viewing you as just another person with fibro.
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Physical Therapy Combo for Fibromyalgia -  Weekly Ultrasound Plus TENS Cuts Pain in Half
A research team shows that combining two common nondrug therapies for sore muscles can reduce fibromyalgia pain by 50 percent and aid sleep by 35 percent. Although the study required patients to attend 12 weekly sessions to document treatment effectiveness, the primary device used costs between $50 and $100 (£32 - £64 ). You can purchase this device with the help of a physical therapist, and use it as needed to contain your pain and improve sleep.
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TENS Machines
For various reasons, pain-killing medication is not always acceptable. Another option for pain relief is a Transcutaneous Electrical Nerve Stimulator (TENS machine). TENS machines deliver small electrical pulses to the body via electrodes placed on the skin. This is thought to help ease pain. The research evidence to support the use of TENS machines is not strong, but they seem to be popular with people who have pain. (advertised from £19)
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This has ended up being another long missive.   Hopefully something will be useful to you.  Please use one or both of the online shopping devices to help raise funds for FMSSAS.  That is if you do shop online!  My guess is that a lot of you do as it saves the physical effort of visiting shops, supermarkets and shopping malls.
I wish you all well
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/