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/

Saturday 21 January 2012

FMSSAS eNews 12.01.21



Hi there!
Information this week, like Topsy, just growed!  I hope it hasn’t grown beyond usefulness.  You won’t have a dull moment if you follow through with some of these!
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WORDz FOR THE WEEK
54.  My greatest fear in life is not having a big enough impact on someone’s life to always be remembered . . .
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Kelly’s Kontributions
The Most Expensive Disorder? Clauw on the FM/CFS-ness of Chronic Illness
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1112e&L=co-cure&T=0&P=456
The Reason Fibromyalgia & Chronic Fatigue Syndrome "Bring Friends"
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1201a&L=co-cure&T=0&P=495
Integrative medicine expert Dr. Alex Vasquez releases innovative new book on fibromyalgia.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1201a&L=co-cure&T=0&P=2287
Delineating psychological and biomedical profiles in a heterogeneous fibromyalgia population using cluster analysis.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1201a&L=co-cure&T=0&P=648
Health and distress predictors of heart rate variability in fibromyalgia and other forms of chronic pain.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1201a&L=co-cure&T=0&P=316
Brain dysfunction in fibromyalgia and somatization disorder using proton magnetic resonance spectroscopy: a controlled study.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1201b&L=co-cure&T=0&P=252
My Secret Weapon: Pre-Emptive Rest
Illness and Housekeeping
Finding Support Groups and Doctors
Lack of Support: "My Family Doesn't Understand"
Is Sleep Associated With Fibromyalgia?
Possibilities from May 2011
FMS Conference, Easter Weekend 6th-9th April
For the first time – day passes are available.  Limited number available.  If you aren’t attending the conference with full board you can attend as a day visitor.  Read the latest news here:  www.fms-sas.co.uk/Conf12/Conf_Bulletin_12-03.doc
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Akvamin – The natural way to improve bone, muscle and joint health
Akvamin is a product for both men and women in all ages. It has to date 5 internationally published studies (PubMed) and a total of 8 studies made which displays Akvamin’s good effects.
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9 Natural Anti-Inflammatory Herbs You May Not Know
Fix your inflammatory conditions naturally with these healing anti-inflammatory herbs
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Dr Myhill on Fibromyalgia and Mitochondrial Dysfunction
Dr. Sarah Myhill is a UK-based physician with a special interest in fatigue and nutrition. Her pioneering research (“Chronic Fatigue Syndrome and Mitochondrial Dysfunction”) suggests the cells’ energy generating mitochondria are dysfunctional in ME/CFS – a situation that can produce various symptom clusters, including: a) blood flow/vascular abnormalities such as orthostatic intolerance, b) the widespread pain and sensitization most typical of fibromyalgia syndrome, and c) fatigue, exhaustion & brain fog.
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 Fibromyalgia – an article by Larry McMahon
Well first of all, it’s what I call a “mystery illness” – inasmuch as the medical profession generally have neither an explanation nor a cure for it. Sufferers experience extreme pain in the muscles and joints, along with extreme exhaustion and other symptoms. Sometimes the pain can move around to different parts of the body. But the baffling thing is, that when tests, scans or x-rays are taken, nothing shows up !
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Coping With Fibromyalgia at Home
Simple strategies can make fibromyalgia manageable at home
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Chronic Pain and Depression: Managing Pain When You’re Depressed
Living with chronic pain should be enough of a burden for anybody. But pile on depression -- one of the most common problems faced by people with chronic pain -- and that burden gets even heavier.
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Chronicles Of The Ups & Downs & Sideways Progress Of A Female Living With Fibromyalgia ©
One of many Fibromyalgia blogs.
The Breakable Bonds Of Friendship
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DWP to recognise fibromyalgia as a real disability - e-petition
Please sign this petition to get FM recognised as a disability by DWP
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Barriers to getting work - Survey
This survey is being undertaken by Voluntary and Community Action Chichester District and is part of a piece of work being undertaken by Chichester in Partnership (the local strategic partnership). The partnership is assessing the barriers to people accessing work and investigating what support would best help people.
If you are a resident of Chichester District (or an organisation supporting people in Chichester District) and you are currently out of work we would appreciate your support in answering this short survey. All individuals will remain anonymous.
Please complete this survey by Friday 3rd February.
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Bond Holidays Newsletter
The 65 bedroom fully accessible hotel is the largest family run fully accessible hotel in the North West, possibly even the UK and with it we are proud to provide an amazing party atmosphere that you will struggle to find elsewhere.  Whether you are choosing to visit us for a holiday or a respite break using our Holidays With Care team we aim to provide you with memories you will cherish forever.  From the sounds of Abba or Elvis to the Stars Of Coronation Street there is always plenty going on at the hotel.  Our Bank Holiday Specials even provide FREE tickets to some of Blackpool’s best attractions! 
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New pension and benefit rates for 2012–2013
Details of next (this) year's pensions and benefits rates have been announced. The new rates will be paid from April 2012.
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That’s it then!  Hope you have a happy pain-free week.  If you have any tips and suggestions or useful websites to aid fibro survival, do let me know.
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/