Saturday, 9 July 2011

FMSSAS eNews 11.07.09


Greetings!
I think I can safely say that I am back to normal – at least as normal as life was prior to my hip dislocation at the beginning of April.  It has been a long slow haul but with patience and love and help from family and friends, I think I have got there!  Thank you all for your (mostly from a distance) support, your messages of goodwill and for that unspoken and unwritten but which I sensed existed.  Now on to this week’s business!
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WORDz FOR THE WEEK
27.  Dreaming of the person you want to be is a waste of the person you already are.
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eNews Archives
My eNewsletters began in February 2008, not intending to be a regular feature.  But it soon became apparent that there was enough information available to pass on some of it on a weekly basis.  I have now gathered together all (I hope) of the messages I have sent out and archived them on the web for posterity!  Should you be curious or wish to find past issues you can do so here www.fms-sas.co.uk/fmseNews.html Since March this year they have also been hosted at http://fmssas-enews.blogspot.com where you can comment if you wish.
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Worthing Newsletters
List of all Newsletters here
July Newsletter
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Physician education, research and “cultural transformation” needed to combat social stigmas associated with pain
 Chronic pain affects an estimated one in four, or 116 million U.S. adults including approximately 10 million with fibromyalgia.  Medical treatment and lost productivity due to pain also costs the nation up to $635 billion each year.
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Listserv Co-cure articles
1)      NSAID Dangers in Fibromyalgia & Chronic Fatigue Syndrome
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1106e&L=co-cure&T=0&P=154
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1)      MCP-1 and IL-8 as Pain Biomarkers in Fibromyalgia: A Pilot Study.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1107a&L=co-cure&T=0&P=2342
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CFIDS and Fibromyalgia
1) "How I Lessen Stress" Controlling stress was a central part of one person's improvement from 30% to 60%.
http://www.cfidsselfhelp.org/library/how-i-lessen-stress
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2) "Expanding My Envelope: How I Balanced Work and CFIDS"
How one person increased her activity level by changing careers.
http://www.cfidsselfhelp.org/library/expanding-my-envelope-how-i-balanced-work-and-cfids
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Welcome to the replay of: Yoga Nidra with Dr. Deirdre.
The powerful positive Benefits of Yoga Nidra Meditation Practice are many:  Read on and listen to the meditation online. 
http://instantteleseminar.com/?eventid=20369568
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Could a fibromite be Miss England?
Simran Gill has suffered from fibromyalgia all her life and had to leave her job as an investment banker due to the condition.  At the last moment she entered the Miss England competition and won her heat and from many thousands of girls is now into the final on the 18th of July at the Birmingham Hilton.
She is a passionate advocate for fibromyalgia.  She’s number 05Black Country  on the second row http://www.missengland.info/finalists  So if you would care to vote for her it could help raise fibromyalgia awareness.
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Buy-at to help FMSSAS funds
Find online bargains, gifts, cheaper gas and electricity services and even book a holiday through our Webshop and raise money for us as you shop online.
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Give as you Live
A n online shopping App that directs a percentage of every purchase you make to Attend. You can use Google, Yahoo, Bing and Everyclick. You can shop directly on 100's of your favourite websites including John Lewis, Play.com and Toys R Us plus many more and raise funds every day for FMSSAS without spending a penny more.  Do please support us in this way.
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East Sussex LINk Newsletter, July 2011-07-06
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Consumers for Health Choice
To update you on the position of the EU Food Supplements Directive (vitamins & minerals) and to share with you the outcome of CHC's visit to the EU Parliament and the reactions of the MEPs.
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Build Littlehampton Community Hospital Campaign
If you live in Littlehampton, or even if you don’t, you might like to support this campaign.
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Genetics - Fibromyalgia Suspect #1
Dr. Pellegrino is a leading fibromyalgia specialist and author who has had FM himself since childhood. His observations of familial fibromyalgia patterns and permutations such as "the aging threshold" reflect more than 20 years' experience treating patients at the Ohio Pain & Rehab Specialists Center. Basic knowledge to help genomic researchers sort things out as we move closer to understanding and control.
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What I'm doing to get my active life back
“Over the past 5 to 6 years I've definitely made some Major changes in my life and am now doing things I haven't been able to do for over 20 years. I must express that the MaxGXL has been an important instrument in my changes but not the only contributor. Along with the Max I have made a massive change in sleeping habits, regular non insane exercising schedule, better eating habits and a relentless decrease of reducing my stress load all equal a much better lifestyle for me.”
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Managing Fibromyalgia in the Heat and Humidity
For many people with fibromyalgia, heat only worsens their symptoms. Fortunately, some simple strategies can keep you cool.
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Another mixed bag indeed!  Read, listen, enjoy, learn, practice.  Knowledge is useless if not applied.
Best of wishes to everyone.
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.

Saturday, 2 July 2011

FMSSAS eNews 11.07.02

Hi to all my fibro friends!
As I write the sun is shining.  Has summer arrived?  Or is it another false alarm?  Here is another mixed bag for you, information, some possible treatments, and a bit of fun for good measure.
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WORDz FOR THE WEEK
26.  Don’t just look, observe . .  Don’t just swallow, taste . .  Don’t just sleep, dream . .  Don’t just think, feel . .  Don’t just exist, live. . .
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Dr JACOB TEITELBAUM will be in the UK giving a presentation to fibromites
Sometime between August 1 and 6 (date and venue and time to be confirmed) in Bath, Somerset.  
I will let you know the date, time, venue and  details of  the programme and tickets when available. 
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MANAGING FIBROMYALGIA
 Stress & Body-Pain      Part 2 
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The 48 Hour Recovery Period in Fibromyalgia and Chronic Fatigue Syndrome
“Have you ever noticed it takes you a couple of days to recover from a stressful event or over exertion? A 48-hour recovery period is one of the few consistent features of fibromyalgia and chronic fatigue syndrome.”http://chronicfatigue.about.com/b/2011/06/27/the-48-hour-recovery-period-in-fibromyalgia-chronic-fatigue-syndrome.htm
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Understanding Fibromyalgia Pain
7 Types of Fibromyalgia Pain
You hear a lot about "fibromyalgia pain," but those of us with fibromyalgia (FMS) experience several kinds of pain.
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Listserv Co-cure articles
1.      Fibromyalgia: when distress becomes (un)sympathetic pain
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1106d&L=co-cure&T=0&P=2923
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2.      Abnormality of circadian rhythm of serum melatonin and other biochemical parameters in fibromyalgia syndrome.https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1106d&L=co-cure&T=0&P=4106
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3.      Possible role for glutamic acid decarboxylase in fibromyalgia symptoms: A conceptual model for chronic pain
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1106d&L=co-cure&T=0&P=4291
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4.      Drug Class Review: Drugs for Fibromyalgia: Final Original Report
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1106d&L=co-cure&T=0&P=4476
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This Cure Works – understanding toxicity and putting environmental illness on the map
"Don't Treat The Symptoms. Treat The Cause.  I Discovered What's Causing My Chronic
Fatigue And Beat It."
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The Pain Doctor
Discover why some doctors are hailing this as “one of the most effective painkillers” you could ever try... a chance to soothe your back pain, muscle and joint pain, rheumatism, sciatica, fibromyalgia, migraines and sports injuries.   You can claim tax relief if you are chronically sick or disabled.
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Active Circulation Formula
Active circulation is essential to good health. On the other hand, poor circulation can cause many problems: varicose veins, phlebitis, haemorrhoids, problems with veins, heavy and swollen legs, heart and brain problems, etc. Clearly, any of us can suffer some degree of circulation-related health problems.  Active Circulation is a fantastic natural remedy for preventing all these risks and curing all the problems caused by poor circulation.
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HydroCare Rehydration
Revitalise your skin, make those dull eyes dazzle and shift that flab and ugly cellulite by effectively rehydrating your body everyday with the isotonic drink that has taken the medical and nutritional community by storm.
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Female Heart Attacks
Not specifically related to fibro but a warning every woman should heed and be aware of.
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Five Ways To Boost Your Energy
Feel drained by late morning or mid-day? Well, you’re not alone. But these energy- boosting tips can change all that!
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Medifocus Digest Alert – Fibromyalgia June 2011-07-01
Each month hundreds of thousands of consumers and healthcare professionals search the National Library of Medicine's Medline database seeking the latest information on their disease/condition. Conducting a thorough and effective Medline search is both a time consuming and daunting task. At Medifocus, we have developed an effective solution to this problem: each month our staff of expert researchers searches Medline for the latest advances in research and clinical medicine for over 70 diseases / conditions. We do this with one goal in mind: to empower you to effectively take control over your health.
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And lastly – a bit of fun!
The mysteries of July and all the 1s - + moneybags!!!
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That’s it for now!  Have a good weekend.  I hope you find the need to read!

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.

Wednesday, 29 June 2011

FMSSAS eNews 11.06.25


Hi there!
This is the last Saturday in June.  The year is half over!  It has been a somewhat traumatic time for me.  I hope you have weathered it well.  Let us all hope for significant improvements in our lives.  Maybe some of the tips and tricks I pass on to you will help.
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WORDz FOR THE WEEK
25.  Our lives begin to end the day we become silent about the things that matter.
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CFIDS & Fibromyalgia
1) "Lifting the Fog" Strategies for controlling brain fog. (Our most popular article ever.) http://www.cfidsselfhelp.org/library/lifting-fog-treating-cognitive-problems
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2) "Killing Me Softly: FM/CFS & Suicide"How to cope when life seems hopeless. http://www.cfidsselfhelp.org/library/killing-me-softly-fmcfs-suicide
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3) "Finding Your Energy Envelope" How to identify your limits and strategies for expanding them (An introduction
to Pacing).
http://www.cfidsselfhelp.org/library/finding-your-energy-envelope-part-1
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4) "Sensory Overload" Causes, treatments and prevention. http://www.cfidsselfhelp.org/library/sensory-overload-sources-and-strategies
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5) "Taming Stressful Thoughts" The three step process for making your self-talk more realistic and more
positive (An introduction to Cognitive Therapy).
http://www.cfidsselfhelp.org/library/taming-stressful-thoughts-making-thoughts-work-for-you
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Serotonin Series: IBS in Fibromyalgia & Chronic Fatigue SyndromeBy Adrienne Dellwo, About.com Guide  June 18, 2011http://chronicfatigue.about.com/b/2011/06/18/serotonin-series-ibs-fibromyalgia-chronic-fatigue-syndrome.htm
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Listserv Co-cure articles
1) Prevalence of asymptomatic Celiac disease in children with Fibromyalgia: a pilot study.http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1106c&L=co-cure&T=0&P=3484
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2) Sodium oxybate for the treatment of fibromyalgia.
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1106c&L=co-cure&T=0&P=3359
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DWP require people with ME/CFS to take part in a consultation process regarding reform of the DLA:
http://www.meassociation.org.uk/?p=6632
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What’s On 4 Me?
A comparatively new site advertising events throughout the country.  Neither Surrey nor Sussex has acquired anyone to be activity leaders.  The franchises are available – at a price!  For more info see the website http://www.whatson4me.co.uk/
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Interview with Researcher on Treating Fibromyalgia with CoQ10
Be sure to follow the links to the various articles.
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Goalistics
Posts in Chronic Pain and other relevant stuff
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Running on Empty? Fuel Up with NADH
Do you ever feel like a car that has run out of gas? If so, it may be time to add some NADH to your cellular tank.  NADH is the fuel our cells need to produce energy and function properly. NADH, a reduced form of nicotinamide adenine dinucleotide, is a naturally occurring coenzyme formed from Niacin (vitamin B3) that plays an essential role in the energy production of every human cell - all 100 trillion of them.
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Gardeners’ Club – Grow it!
We all know how important 5-a-day (or more) fruit and vegetables are for a healthy life.  What could be better than to grow your own?
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How to Drink Your Way Out of Fatigue
“Virtually every health authority, even conventional doctors, recommend 6-8 servings of vegetables and fruits per day but very few of us actually get that. I've found juicing to be a simple and easy way to virtually guarantee that you'll reach your daily target for vegetables. Juicing also allows you to add a wider variety of vegetables to your diet that you might not normally enjoy eating whole, and makes it easier for your body to absorb all those wonderful nutrients.”
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Juice Plus + - 5+ a day
The World Health Organisation recommends we eat 5 to 9 servings of fruits and vegetables every day. Most people don't come anywhere close. Clinically proven Juice Plus+® helps you bridge the gap between what you should eat and what you do eat, every day.  View the Video
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That leaves us on a note of food (or drink) for thought.  I hope they sustain you.
Adios for now, see you next week – I hope!
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.

Saturday, 18 June 2011

FMSSAS eNews 11.06.18


Hi there!
Wow!  This week’s offering is a bumper bundle.  Lots of interesting stuff for you. 
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WORDz FOR THE WEEK
24.  The hardest part about moving forward is not looking back.
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Worthing Area Newsletter
Here is the link to the June Newsletter
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Fibromyalgia Research
Most of the research findings in fibromyalgia point to a malfunctioning of the central nervous system (CNS), which includes the brain and spinal cord. Yet, there appear to be a variety of abnormalities occurring in the peripheral soft tissues (muscles and connective tissue) and the peripheral nervous system that communicates with the CNS.
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Forget Fibromyalgia
The law of attraction is working constantly whether you aware of it or not
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East Sussex LINk Newsletter
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In pain? Crossing your arms may help
Crossing your arms across the middle of your body confuses the brain and helps reduce the intensity of pain, according to a new study.
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Online Program Reduces Impact of Chronic Pain and Improves Quality of Life
‘There is good news for the 76 million Americans who experience chronic pain including migraine, back pain, fibromyalgia and arthritis.  A new study reveals that an online, self-paced chronic pain management program reduces the physical and psychological burdens of this debilitating condition.’
It’s not just for Americans.  Anyone can sign up.
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Alternative Health Practices Show Benefits For Treating Chronic Pain
A variety of complementary and alternative health practices - including meditation and relaxation techniques, manual therapies such as massage and spinal manipulation, meditative exercise forms such as yoga, Tai Chi, and ancient health practices such as acupuncture-show promise for contributing to the management of pain according to research presented on 19th May at the Annual Scientific Meeting of the American Pain Society.
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Relieving Back Pain May Help the Brain
Chronic lower back pain doesn't just hurt. It also appears to cause thinning of certain regions of the brain, which may lead to cognitive impairments, a study shows.
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Personal Independence Payment (PIP)
‘This factsheet is a basic overview of PIP. It is based on what we know so far and will be updated as we get more information.’
‘You can find out more detailed information about the current benefit system in our Disability Rights Handbook, available at
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Fibromyalgia - Guidelines for the Disability Analyst.
Document released under the freedom of information act.

This is the training and development manual for the people carrying out the medical assessments for people claiming ESA. This is the specific chapter dealing with fibromyalgia. It has been produced by the Office of the Chief Medical Adviser.
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Effective Treatment of Fibromyalgia Requires Multimodal Treatment Strategies
Comprehensive assessment of people with fibromyalgia involves more than a physical examination. Treatment of fibromyalgia requires a multidimensional approach that addresses symptoms, as well as psychosocial, behavioral, and physical factors.
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Organizations Launch Coalition 4 Fibromyalgia, and a Call To Action for the DSM-5
NeuroEndocrineImmune Disease (NEIDs) organizations have formed the second phase of the Coalition network to serve their patient community and change public policy. The Coalition 4 Fibromyalgia mission is to present a unified voice with common goals and objectives that will improve the quality of life for fibromyalgia (FM) patients and their families. This professional collaboration will strengthen its member organizations, promote resource-sharing, encourage networking and provide leadership training.
http://hosted.verticalresponse.com/144410/06b509a0f8/12007211/c6963c9e56/
http://www.coalition4fibromyalgia.org/News.html
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EEG Biofeedback Treatment Improves Certain Attention and Somatic Symptoms in Fibromyalgia: A Pilot Study.
Fibromyalgia (FMS) is a chronic, painful disorder often associated with measurable deficiencies in attention. Since EEG biofeedback (EEG-BF) has been used successfully to treat attention problems, we reasoned that this modality might be helpful in the treatment of attention problems in FMS.
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Interference with work in fibromyalgia - effect of treatment with pregabalin and relation to pain response.
Clinical trials in chronic pain often collect information about interference with work as answers to component questions of commonly used questionnaires but these data are not normally analysed separately.
Using Targets to Improve Health & Gain Control
“For my first few years with CFS, I tried to improve by making sweeping changes, an approach that always failed. Then I learned how to set small, realistic goals and that has made all the difference. By setting short-term targets, I have improved from 15% on the rating scale to 60%, with much greater stability and a lower level of symptoms.”
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Living within My Envelope: A How-To Story
In a study of the "envelope theory" reported in The CFIDS Chronicle, Fall 1997, the researchers found that individualized treatment programs can help PWCs [People with CFIDS] achieve their optimal level of activity and manage their illness more effectively. "Living inside the envelope" sounds easy, but it hasn't been for me. Seven years I've had CFIDS and only now am I finally, mostly, living inside my envelope. It's been an arduous process of discovery and letting go.
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We’ve almost reached the longest day of the year, at least the day with the longest daylight hours.  Let’s make the most of the long evenings while they last.  Evenings will be drawing in all too soon and the thoughts of winter will loom!  Get your daily dose of vitamin D while you still can!
Here ends this week’s epistle!  Have a great week and I hope you get some ‘feel good’ in your life.

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.