Saturday 25 February 2012

FMSSAS eNews 12.02.25


 Hello to you all
I hope the milder weather is making you all feel better.  I was amazed that the temperature in our conservatory hit 30 degrees this week!  Summer weather in February!  Whatever next?  Life is full of surprises.  Now for this week’s gems:--
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WORDz FOR THE WEEK
59.  Keep smiling because it may be the only sunshine someone else will see today.
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Kelly’s Kontributions 
Decreased intrinsic brain connectivity is associated with reduced clinical pain in fibromyalgia.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1202a&L=co-cure&T=0&P=6345
The Role of Antipsychotics in the Management of Fibromyalgia
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1202a&L=co-cure&T=0&P=1998
Descending pain modulation and its interaction with peripheral sensitization following sustained isometric muscle contraction in fibromyalgia
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1202b&L=co-cure&T=0&P=7692
Frequency of fibromyalgia syndrome in breast cancer patients.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1202b&L=co-cure&T=0&P=7555
Serum vitamin D level and bone mineral density in premenopausal Egyptian women with fibromyalgia
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1202b&L=co-cure&T=0&P=7383
Working Memory Problems in Fibromyalgia& Chronic Fatigue Syndrome
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1202c&L=co-cure&T=0&P=5374
Adverse Events Attributable to Nocebo in Randomized Controlled Drug Trials in Fibromyalgia Syndrome and Painful Diabetic Peripheral Neuropathy: Systematic Review.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1202c&L=co-cure&T=0&P=4443
Mitochondrial myopathy presenting as fibromyalgia: a case report
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1202c&L=co-cure&T=0&P=5521
The Concept of Incomplete Fibromyalgia Syndrome: Comparison of Incomplete Fibromyalgia Syndrome With Fibromyalgia Syndrome by 1990 ACR Classification Criteria and Its Implications for Newer Criteria and Clinical Practice.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1202c&L=co-cure&T=0&P=4146
"Lifting the Fog: Treating Cognitive Problems"
Strategies for controlling brain fog.
http://www.cfidsselfhelp.org/library/lifting-fog-treating-cognitive-problems
"Counting Your Blessings: How Gratitude Improves Your Health"
People who keep a gratitude journal report fewer symptoms and feel better
about their lives.
http://www.cfidsselfhelp.org/library/counting-your-blessings-how-gratitude-improves-your-health
"Living with Fibromyalgia: What Helps Me"
FM patient Kathy Gamble describes the many strategies she uses to create a
good life with fibromyalgia.
http://www.cfidsselfhelp.org/library/living-with-fibromyalgia-what-helps-me
"How Your Doctor Can Help If You Have CFS/ME"
CFS/FM specialist Dr. Charles Lapp explains.
http://www.cfidsselfhelp.org/library/how-your-doctor-can-help-if-you-have-cfsme
"Adapting to Fibromyalgia"
By focusing on the many practical things she could do to feel better, this
person made a successful adaptation to long-term illness.
http://www.cfidsselfhelp.org/library/adapting-fibromyalgia
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Yoga Nidra
A while ago I gave a link to this
A testimonial from one of our members who tried it and found it very beneficial:-
I received your yoga nidra CD Stress & pain relief, slumber time etc. It is absolutely excellent. Especially the one hour track on pain relief, it goes by in a flash, and the pain whilst practicing this is definitely relieved somewhat.
-- Joan Chappell, UK
See Joan’s and other testimonials here
How to Practice Yoga Nidra
Yoga Nidra is most beneficial as a regular practice done every day or second day. Any time of the day is a good time to do Yoga Nidra except right after a meal. Wait one and a half hours or so to respect the digestive process. A practice time of 15-45 minutes is all that is required. Practice in a quiet place where there will be no interruptions - unplug the phone and turn off cellular phones. A sign on the door "In Practice" or "In Silence" - works well to remind others of our sacred times.
Here is the link for the recordings of the recent teleseminar.
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Earth Clinic's treasure chest of home remedies!
Our readers have been testing and developing these folk remedies, with contributors from every part of the world, since 1999. We've been sent some of the most exciting remedies to date – dozens of restorative remedies, plus natural cures for cancer, fibromyalgia, back pain and better than 350 other diseases and conditions!
See also
and
Supplement Cures
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Thyroid Disease & Fibromyalgia: The Factor That's Nearly Always Overlooked
"Inadequate thyroid hormone regulation may be one of the primary underlying factors in many patients with fibromyalgia," writes nutrition researcher Dr. Joseph Mercola. Whether it's dry skin, hair loss, weight gain, tender points, fatigue, or chronic aching and pain, "most of the symptoms of low thyroid correspond to symptoms of fibromyalgia."
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Working Memory Problems in Fibromyalgia & Chronic Fatigue Syndrome
Do you walk into a room only to forget why you're there? Do you forget what's on your grocery list as soon as you look away from it, or have trouble following step-by-step instructions?
Those are all symptoms of a working memory impairment, which is a common part of the cognitive dysfunction (brain fog or fibro fog) caused by fibromyalgia and chronic fatigue syndrome.
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Secret Behind Chang Shan May Lead to New Treatments for Autoimmune Disorders
Feb. 12, 2012 -- A new discovery about a 2,000-year-old Chinese herbal remedy derived from the roots of the blue evergreen hydrangea may pave the way for a new generation of targeted treatments for autoimmune disorders.
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12 Ways to Manage Fibromyalgia
There are little things you can do to minimize fibromyalgia's impact on your life.
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Tai Chi Classes now in Henfield
Nicola Jones who runs classes in Brighton, Crawley, Horsham & Worthing is starting up in Henfield.  For details see her website.
Some of our members are already benefiting from attending.
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Quiz: The ABCs of Vitamins
Getting the right amounts of the right vitamins can boost mood, fight pain, and increase energy.
Are you on track?  Do the quiz.
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Fibromyalgia Quiz: Test Your Medical IQ
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Chronic pain management service
The Chronic Pain Service provides a comprehensive multi-disciplinary assessment and works closely with the other departments to ensure that patients receive a high quality standard of care and pain management.  (Service available at Bognor Regis but is for all West Sussex patients.  Have any of you tried this?)
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East Sussex LINk Survey of Public Opinion on Primary care Provision (Doctor’s Surgeries, NHS Dentists, NHS Opticians and Community Pharmacies) Across East Sussex
East Sussex Local Involvement Network (LINk) is carrying out a survey in order to understand the quality, accessibility, ease of use and levels of satisfaction with primary care services (doctor’s surgeries, NHS Dentists, NHS Opticians and Community Pharmacies) across East Sussex and to help us identify any areas of concern and opportunities for improvement.
If you live in East Susesex, then please complete the survey:-
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NHS report warns of health reform risks
Internal reports warn that health reforms risk overspending while at the same time reducing levels of patient care
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New Poll shows voters against Health Reforms
52% of respondents think the bill should be dropped
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Emerging Health Structures
You are invited to the following event:
Tuesday, 27 March 2012 from 09:30 to 16:00 (GMT) Leatherhead Leisure Centre, Surrey
More details here where you can register if you wish to attend.
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If you appreciate having News every week would you consider making a donation to FMSSAS?  If so please click here.
Thank you in anticipation.
Farewell for now fibro friends
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 18 February 2012

FMSSAS eNews 12.02.18

Hello again
The FMS Conference is getting nearer.  Don’t forget to book asap to avoid disappointment.  You can attend the whole weekend all inclusive for £179 or attend as a day visitor on the Saturday and Sunday for £79.  More details are here.  www.fms-sas.co.uk/fmsConf12a.html.  It's Easter weekend, 6th-9th April!
I hope to see you there!
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WORDz FOR THE WEEK
58.  I think what messes us up most of the time, is that we have these perfect pictures of how things are supposed to be.
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Worthing Area Fibro Group February Newsletter.
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American Pain Foundation Newsletter
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VICTIMS OF ATOS CORRUPTION
Recording your Atos WCA assessments – email from Paul Smith (Atos Victims Group)
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Pain Body Chart
Chart provided by WS PCT for locating painful areas of the body.  Next time you go to your doctors, you could take one and show them where you are hurting.  Useful for keeping a record – new chart each week?
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Recorded Yoga Nidra Practices led by Deirdre Rawlings, PhD, ND.
Reduce Chronic Pain, Fatigue, & Insomnia  through a Deep Mindful Relaxation Journey that Heals, Renews, and Transforms.   Feb 21st - Register NOW.
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Does your teen complain of pain, tenderness, stiffness, and fatigue?
If so, he or she may have a condition called fibromyalgia. Juvenile fibromyalgia is a chronic condition among teenagers that is characterized by significant widespread pain and fatigue and other symptoms that can make performing their daily activities a real struggle.
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Believe in Yourself—Steering Clear of Self-Doubt and Destructive Thoughts
How do you believe in yourself when others trivialize your symptoms? Or how do you continue to like yourself when fibromyalgia keeps stealing your energy and ability to function as you once did? These situations fuel ongoing battles and undermine your self-esteem. But no matter what others say or do, it is essential that you believe in yourself.
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Muscle Relaxants: Do they work for fibromyalgia?
Are your muscles always tight and achy? Perhaps you have ropy bands with knots in the mid-section, and just pressing on these areas can send your pain through the roof. But the knots do more than hurt, they make the muscles tight and stiff. It’s logical to wonder if muscle relaxants might ease the tension in your muscles and help loosen your painful knots.
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Fibro-Friendly Hobbies and Pastimes
One of the challenges of adjusting to fibromyalgia is finding hobbies and pastimes that don’t aggravate your symptoms. Better yet, you want to seek out activities that provide you with gratification and distraction from the pain. The Fibomyalgia Network surveyed its Members and here are a few of the most endorsed fibro-friendly pastimes:
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Hair Problems in Fibromyalgia
Fibromyalgia affects everything, from your hair to your toenails. And if you're thinking, "Hey, I wonder if my hair problems are related to fibromyalgia," there's a good chance they are.
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Pain & Cognitive Function in Fibromyalgia
A few days ago, a German researcher told the 6th World Congress of the World Institute of Pain that, according to his latest study, the cognitive dysfunction (fibro fog) of fibromyalgia is primarily related to one single factor.
That factor is not depression. It is not anxiety. It is not even unrefreshing sleep. 
That factor is: Pain.
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Develop Coping Skills for Living With Fibromyalgia
When you're diagnosed with fibromyalgia (FM), among the initial things you learn is that there's no cure and that it can be hard to find effective treatments. It's normal to feel sad, angry, helpless and confused. Once you're beyond the initial shock, however, the way you deal with your condition can make a big difference in how you feel.
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Fibromyalgia, Chronic Fatigue Syndrome & Interstitial Cystitis
Fibromyalgia, chronic fatigue syndrome and interstitial cystitis (IC) -- a painful bladder condition -- frequently occur together. Women may be up to 10 times more likely than men to develop it.
See also
and
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Low Dose Naltrexone (LDN)
This drug is being used as a regulator of the immune system, providing relief to patients with autoimmune diseases, and central nervous system disorders.  Whilst it is not licensed by the FDA specifically for these conditions, physicians are permitted to prescribe LDN ‘off-label’ for any use they think is appropriate.
The apparently diverse conditions in which LDN appears to have a therapeutic effect are united by their ability to benefit from increased levels of endorphins (naturally occurring opioids – specifically OGF).  Fibromyalgia is cited as an example of the successful use of LDN.
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Fibromyalgia Insider Secrets: 10 Top Experts
New eBook with Audio Series with Proven Solutions
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Web MD - Pain management health centre
11 tips for living with chronic pain
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From the Skin Tissue to the Brain… it all signals pain!
How can you hurt from head to toe? Research shows the pain control system in the skin, spinal cord, and brain of fibromyalgia patients is overloaded and offers a reason for why you ache all over.
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A picture of professional organisations calling for the health bill to be dropped.
The Royal College of General Practitioners issued a statement calling for the health bill to be dropped, joining many other health organisations who see it as fatally flawed. The size of professional opposition to the bill is undeniable and overwhelming, but to this can also be added the huge concern of health sector experts, charities, campaigners, economists and the majority of the public. 
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NHS Matters
The pressure on the government to drop their health bill is rising – and there is a real chance to save the NHS from these damaging changes.  Sign the ePetition.
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East Sussex Hospital Trust Clinical Commissioning Strategy- Pre consultatation meeting for Voluntary and Community organisations
The way in which hospital services are run is set to change across East Sussex and the two main hospitals in Hastings and Eastbourne. This may have huge implications for patients and service users and should be of concern for any voluntary and community organisation involved in health and social care.  SpeakUp Forum, the Hastings Community Network, 3VA RVA and East Sussex LINk have come together to offer groups the opportunity to digest, discuss, question and become informed about the issues.
Please join us on Tuesday 28th February at 3VA, 8 Saffrons Road, Eastbourne BN21 1DG from 1.00pm – 3.00pm for a meeting which will give you the chance to hear about the options from the Trust and feed into the East Sussex LINk research which will be one of the key influencing mechanisms throughout the whole decision-making process.  To book a place go  here
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Disabled people face unlimited unpaid work or cuts in benefit
Mental health groups and charities attack plans drawn up by Department for Work and Pensions
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I never cease to be amazed by the amount of information that is gleaned each week.  I hope you can share the knowledge you gain with unsympathetic health professionals.  I will gladly put any of them on my mailing list if they want to be kept informed as well.  Not only the unsympathetic ones either!  The others are more likely to be interested.  Do make the offer to any you have contact with.
I look forward to hearing from them!
Every good wish
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 11 February 2012

FMSSAS eNews 12.02.11



Good morning to you
A cold but sunny one.  Oh my, how cold it has been - again!  I hope you have managed to wrap up warmly and avoid frostbite.  Information about fibro continues to flood in and there is a plethora of articles FYI this week.  Enjoy!!
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WORDz FOR THE WEEK
57.  Realise what’s important in your life.  What you can live with, but more importantly what you can’t live without. 
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Disability Rights UK Factsheet
The Personal Independence Payment (PIP) replaces working age disability living allowance (DLA) from April 2013.
PIP will have many similarities with DLA. In particular it will have two components: a daily living component (which has similarities to the current care component) and a mobility component.
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ME/CFS Community
Abstracts of a variety of articles.
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What Doctors Don’t Tell You
Health eBooks now available at £3.95 each + VAT.  Of possible interest to FM patients - CHRONIC PAIN, HEALING FOODS, THE NEW HEALING, SUPPLEMENTS UNDER THE MICROSCOPE.
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Dr Sarah Myhill in radio interview
Dr Myhill, the ME/Fibro doctor in Wales, is talking about diet, allergies, etc. in the link below. Be patient when the link first begins, she comes on the programme in the end. She is quite an amazing woman and worth a listen to.  Webpage here
mp3 download here
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Pain Negatively Affects Cognition in Fibromyalgia
Pain is the primary factor contributing to cognitive impairment in patients with fibromyalgia syndrome, over and above depression, anxiety, fatigue, sleep complaints, and medication use, reported Stefan Duschek, PhD, from the University of Munich, in Germany, here at the 6th World Congress of the World Institute of Pain.
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Do Women Feel Greater Pain Than Men?
A preponderance of research evidence suggests that there are profound differences between men and women in the prevalence, perception, reporting, and treatment of pain. A newly published study adds to that, finding at the least that women seem less shy than men about reporting their level of pain on standard assessment measures. Whether or not women actually feel greater pain and over a broad range of medical conditions, as suggested by this research, may be uncertain.
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Chronic Pain Control Basics for ME/CFS and Fibromyalgia
Of the difficult but treatable symptoms of chronic fatigue syndrome (CFS) and fibromyalgia (FM), chronic pain is rarely treated adequately. Headaches, lymph node tenderness, muscle pain and joint pain cause considerable long term discomfort – sometimes mild, sometimes severe. There may be fluctuations in the severity of pain.
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Is magnesium citrate treatment effective on pain, clinical parameters and functional status in patients with fibromyalgia?
The aims of this study were to investigate the relationship between magnesium levels and fibromyalgia symptoms and to determine the effect of magnesium citrate treatment on these symptoms.
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Intrinsic brain connectivity in fibromyalgia is associated with chronic pain intensity
Fibromyalgia (FM) is considered to be the prototypical central chronic pain syndrome and is associated with widespread pain that fluctuates spontaneously. Multiple studies have demonstrated altered brain activity in these patients. The objective of this study was to investigate the degree of connectivity between multiple brain networks in patients with FM, as well as how activity in these networks correlates with the level of spontaneous pain.
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Sleep oh sleep, where art thou? Could your fibromyalgia medications be causing insomnia?
Yes, fibromyalgia medication could be causing your insomnia.
 Cymbalta® (Duloxetine) and Savella® (milnacipran) which have been approved for treating fibromyalgia are in a class of drugs called selective serotonin and norepinephrine reuptake inhibitors (SNRIs) and insomnia is a side effect for both medications.
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Fibromyalgia: A Plausible Model for Cause and Cure
Fibromyalgia is a disease of widespread soft-tissue pain and stiffness. It often coincides with symptoms of persistent fatigue, exercise intolerance, disrupted and non-restorative sleep, tension headaches, migraines, blurred vision, abnormalities of the skin or fingernails, painful menstrual periods, numbness or tingling, heart palpitations, sleep apnea, temperature sensitivity, restless legs, impaired cognition, irritable bladder, and intestinal symptoms of irritable bowel, bloating, gas, belching, pain and distention.
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Help Yourself Sleep Well Again .  Fibro pain and tenderness don't have to keep you from getting the rest you need.  Get tips for dealing with sleep problems.
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Magnesium the Heart Mineral
Magnesium is the most versatile mineral in your body and is known to be required for several hundred different functions. One of the principle functions of magnesium in the body is that it enables muscles to relax. Without sufficient magnesium in the body, the muscles cramp and we can feel tense, nervous and jittery. In fact, anything that is tight, irritable, crampy and stiff – whether it is a body part or even a mood – is a sign of magnesium deficiency.
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Independent Living newsletter - Thu, 09/02/2012
Some items here might be of interest
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Winter Fuel Payment for disabled and chronically sick people
Will you sign this ePetition?
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Very Low-Cost Ways to Spice up Your Love Life
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Earth Balance Tai Chi, Qi Gong & Meditation Classes
See timetable for classes in Crawley, Horsham and Worthing and workshops in Brighton.
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Gymnophobics – recommendation by a member
I have been going to the Gymnophobics gym in Hove beside the Co-op on Blatchington Road since last August.  It is women only and a circuit of 30 mins with 3 mins on each machine.  There is no treadmill or cross trainer or anything that pounds through the body.  You are assessed and all exercises are suited to whatever condition you have.  I can honestly say that it has been worth the time and effort as I can now manage better without a walking stick and feel more energetic than before.  It seems to work for me so if anyone else is interested in having a go ring them on 01273 733933 and book a trial.  It is friendly and even a cup of tea or coffee afterwards so that you can rest before setting off.  It is the only exercise that I have found that seems to work for me so worth every penny.
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LOOKING FOR MORE RESOURCES ON FIBRO? – some American sites
National Fibro Research Association –  http://www.nfra.net/
National Fibromyalgia Association - http://www.fmaware.org/
FM & Chronic Pain Association – www.fmcpaware.org
 American Chronic Pain Association/FM -  http://www.theacpa.org/conditionDetail.aspx?id=1
National Fibromyalgia Partnership - www.fmpartnership.org
CFS & FM Association  - http://www.ncfsfa.org/
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That is enough for anyone for one week’s study.  If you have a romantic relationship I hope St Valentine’s Day proves to be enjoyable for you in whatever way you may celebrate it!
Kindest 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/