FMSSAS eNews 11.12.31

Hi fibro friends

It seems that I am able to deliver, business as usual.  Hopefully I will be able to keep up the eNews for you, and find things that give you hope and help you manage your fibromyalgia.  Thanks to the many of you who have sent me good wishes both for a speedy recovery and with seasonal greetings.

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WORDz FOR THE WEEK

51.  The greatest mistake you can make in life is to continually fear you will make one.

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Fibromyalgia can no longer be called the 'invisible' syndrome (Not new but still relevant)

Published: Monday, November 3, 2008 - 09:21 in Health & Medicine

Using single photon emission computed tomography (SPECT), researchers in France were able to detect functional abnormalities in certain regions in the brains of patients diagnosed with fibromyalgia, reinforcing the idea that symptoms of the disorder are related to a dysfunction in those parts of the brain where pain is processed.

http://esciencenews.com/articles/2008/11/03/fibromyalgia.can.no.longer.be.called.invisible.syndrome

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“Funnily Enough” By Sophie Neville

View this Author's Spotlight   Ships in 5–7 business days

Hardcover, 387 pages   Preview  Price:

£12.60

From the glamorous world of television production, working on some of the BBC's hottest soap operas, dramas, and educational programmes - Sophie is torn between her love of Africa, and returning to England for the sake of her career. But when she falls ill on the set of a show she is directing, she is forced to take to her bed, and over the next ten months, to take stock of her life. It sounds like a novel. But it isn't. Diagnosed in 1991 with Chronic Fatigue Syndrome, Sophie's doctor at the BBC prescribes an extraordinary treatment: write a diary. So, armed with her watercolours, and with the support of her family, friends, dogs and otters in rural Gloucestershire, she sets out on a spiritual journey which is at times funny, poignant and uplifting.

http://www.lulu.com/spotlight/sophieneville

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Is Sensory Overload Part of Your Fibro?

You expect to have painful muscles everywhere with fibromyalgia. Even if your discomfort fluctuates from day to day, this symptom is always present. The pain of fibro is amplified as though the volume control knob is turned up as high as it could go. But there is much more to fibromyalgia than just the pain. Chances are, you have other sensory-related symptoms that are roaring off the charts and making your fibro all the more difficult to manage.

http://www.fmnetnews.com/free-articles/article-samples/sensory-overload

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Living With Chronic Pain

Slideshow: 10 Daily Habits to Reduce Chronic Pain

http://www.webmd.com/pain-management/chronic-pain-11/slideshow-pain-tips?ecd=wnl_cbp_122211

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Worthing Support Group Newsletter

Apologies for lateness

www.fms-sas.co.uk/PDF/WorthingFibroNews1112.pdf

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Diagnosing Fibromyalgia: Common Misdiagnoses

The symptoms of fibromyalgia are similar to many other diseases.

http://www.webmd.com/fibromyalgia/fibromyalgia-what-you-need-to-know-10/fibromyalgia-common-misdiagnoses?ecd=wnl_fib_121311

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Fibromyalgia & Chronic Pain LIFE 2012 January-February Issue

Access to previous editions also available.

http://fmcpaware.org/fibromyalgia-a-chronic-pain-life-januaryfebruary-2012

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Fibromyalgia and Crohn’s Disease
Though not very common, some people with fibromyalgia symptoms also appear to have Crohn’s disease. They experience extreme gastrointestinal side effects, which may be the result of an immune system that has been compromised by fibromyalgia. The link between fibromyalgia and Crohn’s disease appears to be irritable bowel syndrome (IBS). IBS is a less serious form of IBD, and possibly a precursor to Crohn’s disease in some fibromyalgia patients.

http://www.fibromyalgia-symptoms.org/fibromyalgia_crohns.html?mid=564

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As today is the last day of 2011, I wish you and yours all that is good for 2012.  Let us hope for a breakthrough in research and that something really effective is discovered in pain relief or cure for fibro.

My fondest wishes 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 eNews 11.12.17

Hello to everyone!

Here I am again, post-operative and increasingly operational.  Am walking with two walking sticks, leg still painful but dosed up on painkillers - am coping.  This is the first time I have switched on the computer since arriving home on Monday.  I have hardly attempted to catch up on emails – over 300 of them piled up, so they will have to wait.  If you have sent one of them, I thank you, and apologise for not acknowledging it – yet. 

I was treated extremely well at the Horder Centre.  I would thoroughly recommend it to anyone needing orthopaedic surgery.  http://www.hordercentre.co.uk/ Although a private, charity based hospital they do take NHS patients if referred by the patient’s GP and you can select it through the Choose and Book system.

I did check the emails for anything from Kelly.  Fortunately she has a great list for you this week.  She offers apologies if any are duplicates of previous issues.  I haven’t checked them. 

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WORDz FOR THE WEEK

50.  We do not know the value of our moments until they have become a memory.

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Kelly’s Kontributions

Relationship between body mass index, fat mass and lean mass with SF-36 quality of life scores in a group of fibromyalgia patients.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1111c&L=co-cure&T=0&P=5176 The interest of gait markers in the identification of subgroups among fibromyalgia patients.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1111c&L=co-cure&T=0&P=6139 .
Women with FMS have lower levels of calcium, magnesium, iron and manganese ...
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1111c&L=co-cure&T=0&P=7698 .
ME/CFS and Fibromyalgia Information Exchange Forum
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1111d&L=co-cure&T=0&P=8440 .
Cardiac autonomic impairment and chronotropic incompetence in fibromyalgia
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1111d&L=co-cure&T=0&P=6097 .
Early Life Adversity as a Risk Factor for Fibromyalgia in Later Life.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1111d&L=co-cure&T=0&P=7675 .
Fibromyalgia And Chronic Fatigue Syndrome In Children
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1111d&L=co-cure&T=0&P=7820 .
Genetics and Gene Expression Involving Stress and Distress Pathways in Fibromyalgia with and without Comorbid Chronic Fatigue Syndrome
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1111d&L=co-cure&T=0&P=5187 .
Sex With Fibromyalgia& Chronic Fatigue Syndrome
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1111e&L=co-cure&T=0&P=939 .
Sleep Apnea: Adjusting to CPAP With Fibromyalgia
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1112a&L=co-cure&T=0&P=1645 .
Evidence of central inflammation in fibromyalgia - Increased cerebrospinal fluid interleukin-8 levels
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1112a&L=co-cure&T=0&P=2737 .
Neurobiology underlying fibromyalgia symptoms
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1112a&L=co-cure&T=0&P=2329 .
Sleep as a window into the world of fibromyalgia syndrome
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1112a&L=co-cure&T=0&P=2605 .
The clinical concept of fibromyalgia as a changing paradigm in the past 20 years
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1112a&L=co-cure&T=0&P=2450 .
Effect of Low-Dose Amitriptyline on Autonomic Functions and Peripheral Blood Flow in Fibromyalgia: A Pilot Study
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1112b&L=co-cure&T=0&P=2588 .

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I hope to get back to my own research before long.  Please bear with me until I am coping with life better.  Meanwhile, have a great Christmas.

Luv to you all

Stella

http://ak.imgag.com/imgag/product/preview/flash/bws8Shell_fps24.swf?ihost=http://ak.imgag.com/imgag&brandldrPath=/product/full/el/&cardNum=/product/full/ap/3166187/graphic1

If link does not work copy and paste into your web browser.

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 eNews 11.12.06

Surprise, surprise!

You didn’t expect this, I know, but a few important things have surfaced so I felt I had to send another eNews despite what I said last Saturday!  Thanks to the many of you who sent me good wishes for tomorrow.

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WORDz FOR THE WEEK

49.  Eyes that do not cry, do not see.

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DLA Medicals?

In my last eNews I asked for experiences regarding DLA medicals.  If you have experienced this please contact Debbie -  07729891175 in my absence.

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Fibromyalgia Health Check – Take the WebMD Fibromyalgia Symptom Assessment

Living with the pain and fatigue of fibromyalgia can be a daily struggle.  This WebMD Fibromyalgia Health Check can help.  Start by assessing your symptoms, treatment and lifestyle and you will get personalised information and tips that will help you improve your life with fibromyalgia.

http://www.webmd.com/fibromyalgia/fibromyalgia-health-check/default.htm?mid=5431178

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Pat's Petition
I received this email and am including it in full.  I have mentioned this petition before.  If you have not signed it yet please do so now.

Hi there Fibromyalgia Support - Surrey and Sussex
We know that our members with Fibromyalgia have particular difficulty with
benefits and the changes to benefits so we are sure that a lot of your
members will want to support Pat.
I'm writing to ask you to support Pat's Petition and to pass the information
about the petition on to your members. It's a chance for them to make their
views known to government
so please pass the information on to them so they can make their minds up if
they want to support Pat.
Pat is blind and a carer. She was tired of the cuts to benefits and services
falling disproportionately on people with disability. Pat started a
government e-petition so that people with disability and their families can
make their voice heard. Many of the large disability charities are
supporting Pat. But mainly it is people with disability and their families
who are spreading the word.
Pat's petition is at -
http://epetitions.direct.gov.uk/petitions/20968

and the details about the petition and the sponsors are at -
http://carerwatch.com/reform/

This is chance for all people with disability to speak with one voice and
make the government hear if only we can get the information out to them.
We really hope you will help us get information about Pat's Petition out to
your members. We only have people with disability and their families like us
to spread the word about this petition.
Please get in touch with us and we can tell you more about this campaign.
Frances Kelly
CarerWatch

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DWP publications, useful if applying for benefits

A guide to Employment and Support Allowance – The Work Capability Assessment

This guide gives detailed information about the ‘Work Capability Assessment’ element of Employment and Support Allowance. It is aimed mainly at professionals and contractors, but can also be read by claimants. Because of the detailed nature of this guide, it is more complicated than the main information leaflets produced by Jobcentre Plus and some words or phrases may be unfamiliar.

www.fms-sas.co.uk/eNews/2011/DWP_medical_assessment_guide.pdf

And

 Limited capability for work questionnaire

www.fms-sas.co.uk/eNews/2011/DWP_limited_Capacity_to_Work_Questions.pdf

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Bye for now.  See you in the New Year, if not before.  Have a great Christmas.

Stella

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 eNews 11.12.03

Hi everyone

Next Wednesday is the day my operation is scheduled for!  I’m keeping fingers and toes crossed that there will be no reason for it to be postponed.  It will mean that I shall be out of action for some time so I shall have to take a break from eNews.  But be assured I’ll be back on the job as soon as I am able.  Today’s list is not quite as long as it has sometimes been.  Refer back to previous eNews issues if you haven’t got enough to be going on with.  They can be found at www.fms-sas.co.uk/fmseNews.html and on a blog at http://fmssas-enews.blogspot.com/  This could be useful in the next few weeks.

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WORDz FOR THE WEEK

48.  Death is not the most tragic loss in life.  The most tragic loss is what dies inside while we’re still alive.

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Living with Pain: Gratitude and Well-Being

Giving thanks doesn’t need to be limited to, or delegated by, a national holiday.   The idea of gratitude as a “general state of thankfulness”  or a “life orientation” is interesting. It suggests a way of life in which you regularly focus on what is positive and less on what is negative, on what you can do  rather than on what you can’t do, and on what you have rather than on what you don’t have. People who genuinely feel grateful on a day-to-day basis tend to report greater well-being, better functioning, and less depression. The better you feel overall, the better you will manage your pain.

http://goalistics.com/2011/11/gratitude-well-being/

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Pelvic Messenger: Celeste Cooper! Fibro expert/Author (BlogTalkRadio)

Welcome Celeste Cooper! Best Selling Author of the Book "Integrative Therapies for Fibromyalgia,Chronic Fatigue Syndrome and Myofacial Pain"

Is here to discuss her book, her work as a Share Care Fibro expert(medical site founded by Harpo Studios/Oprah), and ways in which she advises and advocates for numerous patients each and every day!!

Celeste is a wealth of information on using the mind-body connection to deal with chronic pain, and her work as a RN in addition to being a patient herself makes her all the more compassionate and valuable to our community

http://www.blogtalkradio.com/pelvicmessenger/2011/11/16/pelvic-messenger-celeste-cooper-fibro-expertauthor

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The must have book for JAN 1st!

Beat Sugar Addiction NOW! By Jacob Teitelbaum & Deirdre Rawlings & Chrystle Fiedler. 

www.fms-sas.co.uk/eNews/2011/Book_for_JAN_1st.doc

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DLA Medicals?

Have you experienced a DLA medical examination?  If so it would be good to pool experiences.  One of our members would like a chat with you to find out what to expect.  Let me know right away if you can help and would like to be put in touch.  Thank you.

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Are you doing everything you can to control your fibromyalgia?

3 Fibromyalgia books that can help You!

1.      Fibromyalgia – Basic Care

2.      Fibromyalgia – Test – Diagnosis of a crippling disease

3.      Fibromyalgia – A real disease? – Yes! It’s not in your head!

http://www.fibromyalgia-information-relief.com/fibromyalgia-books.html

Click on each book for further information.

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Florence Nightingale Newsletter

Through her biography she may have suffered from fibromyalgia. Florence Nightingale born on 12 May 1820, the 12th of May is now the international fibromyalgia day.

You can subscribe to newsletters on the site dedicated to her and fibromyalgia.

http://www.fibromyalgia-information-relief.com/Florence-Nightingale.html

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Easy Fundraising

I'm helping Fibromyalgia Support For Surrey and Sussex to raise money whenever I shop online - could you do the same?

It's very simple - just visit http://www.easyfundraising.org.uk/causes/fmssas/  to register and shop with over 2000 well known retailers like Amazon, Argos, M&S, eBay and many more. Whenever I buy something, the retailer makes a donation to Fibromyalgia Support For Surrey and Sussex. They've helped other causes raise over £2,000,000 so it really does work.

I'd be really grateful if you could use easyfundraising too. It won't cost you a penny extra to shop through easyfundraising and you can even save money with special offers and voucher codes.

And this Christmas easyfundraising are giving away prizes worth over £5,000 including £1000 cash, so if you start fundraising now, you could be a winner!

So please make a difference to Fibromyalgia Support For Surrey and Sussex and take a look at easyfundraising today - http://www.easyfundraising.org.uk/causes/fmssas/

Thanks

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I will conclude by wishing you a very happy and not too stressful Christmas, and hope that the New Year will fulfil your aspirations and bring new relief from fibro pain.  The Christmas newsletter that we send to family and friends, far flung as well as less far afield is http://www.kingmere.f9.co.uk/Xmas/11.pdf - just in case you are interested. 

Stella

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/