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FMS eNews 14/02/15


A Happy St. Valentine's Day to you all.  Whether you are a romantic or not, whether you have a partner or not, rest assured that SOMEONE loves you - even if it's only me! And remember to love yourself.
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WORDz for the WEEK

 209.  Reason is caught in the middle of two extremes, both of which have been 'attrations' for humanity; one is ignorance, the other is insanity.  BE REASONABLE!!!
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From Adrienne Dellwo, your Guide to Fibromyalgia & Chronic Fatigue Syndrome

 As if our illness(es) weren't bad enough every day, we also have those symptom flares that REALLY take us out of commission. 
Believe it or not, researchers have done very little to help us understand flares, so this new study really stands out. That's below.
Also this week, a look at something we all have to deal with every day: food. Would a dietary change help you feel better? What should you change? Are your symptoms all from FMS/ME/CFS or do you have a digestive disorder? Find out what we know about how diet impacts FMS and ME/CFS so you can make informed decisions.
Take care of yourself!
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Fibromyalgia Flares: Triggers, Symptoms & Coping
Fibromyalgia, for most of us, isn't the same every day. Far from it, in fact. Instead, we have flares (when symptoms are at their worst) and remissions (when symptoms are milder and/or fewer in number.)
Even though flares are a major component of fibromyalgia, researchers know very little about them. This is one area where our personal knowledge is greater.
Research published in January 2015 sought to start an investigation into our flares. The researchers asked 44 people with fibromyalgia seven open-ended questions about their flares, including: . . . . . . . .
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 Massage for a Sounder Sleep, Resveratrol, and More
This newsletter has a new look, but it follows the same format as my other newsletters - just click the article headline or the "Read Now" link to read the full article. I hope you like it and find it more readable.
1. Massage for a Sounder Sleep?
Can a massage help you rest more easily? Find out how massage therapy might help ease your sleep troubles.    Read more
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 Cooking for Love? Try These Aphrodisiacs
Valentine's Day is coming up so I thought it might be fun to take a look at some foods that have been called aphrodisiacs. It's all in fun -- I mean I know there's no proof they'll work as intended, but still, many provide nutrients that are necessary for healthy sexual function. 
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Fibro Awareness Project
A FaceBook group has been formed to organize  something spectacular on the 12 May 2015 for Fibromyalgia Awareness Day - Florence Nightingale's birthday. Already, as previously reported, Blackpool Tower will be illuminated purple.  The organisers of this project, (which includes me) would like to know your thoughts about what else could be done to raise awareness on this  special day.  I would like to hear from you if you have any ideas. fmsstella@gmail.com
We want to work together collaboratively in order to make people aware that although they cannot see our condition its a very real part of who we are and the struggles that we face every day.
We would like to use initiatives so the more awareness of the problems that we face everyday, may push the NHS and relevant health departments to work towards a consistent diagnosis and treatment for this condition.
Stella
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18-week Referral to Treatment target

 This is your chance to let people know the problems facing those with FM who are waiting for a diagnosis or treatment.  Please contact Paul Faulkener if you have experienced waiting time problems.  Thanks
Pam Stewart

 "I am a freelance journalist looking to speak to anybody with a story to tell about the 18-week Referral to Treatment target - that is the legal right by which patients should be seen and begin treatment in hospital (as in an inpatient or outpatient) within 18 weeks of being referred by their GP.   Specifically, I would be keen to hear from patients who waited longer than 18 weeks and whether they queried their wait - and, if so, what response they got.   I am particularly interested in anybody who was transferred to another hospital or private clinic (on the NHS) which was able to treat them sooner.
Please contact Paul Faulkener directly if you are interested; and keep head office updated if your story is used.    Tel: 0799 088 1861 faulknerp@yahoo.com "
Thank you for reading this. If anyone has any questions then please email the office on head.office@fmauk.org. 
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Fibromyalgia-stress and co-morbid condition correlations

 BRIEF
I am a third year Psychology BSc undergraduate at the University of Central Lancashire (UCLan). I am embarking on a project for my final dissertation on chronic illness and the effect stress and lifestyle has on the condition and correlates with other chronic illnesses. There will be a series of questions relating to the chronic illness Fibromyalgia (FMS), stress, lifestyle choices and quality of life.
You are invited to participate in the survey.  Click here.  
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 7 Secrets for Surviving in the Workplace with Fibromyalgia
Lets face it – the long days and fast pace of today’s workforce aren’t exactly suited to those of us suffering from chronic pain. For millions of people suffering from fibromyalgia, work is an on-going struggle. Every work environment or career presents its own challenges to those suffering from fibromyalgia – but regardless of your job there are steps you can take to help make the best of your situation and lessen the negative impact.
Here are 7 secrets we’ve discovered that can help you manage your fibromyalgia in the workplace:

  1. Talk To Your Boss
  2. Use Stress Coping Strategies
  3. Explore Workplace Modifications
  4. Stretch
  5. Bring the Heat
  6. Make To-Do Lists
  7. Apply for Disability

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Connections: the Pain and Distress Circuit in Fibromyalgia Identified 
Fibromyalgia (FM), of course, is much more than about pain.  Called the “prototypical functional pain syndrome,” people with fibromyalgia often experience problems thinking (fibro-fog), sleep and autonomic nervous system problems, depression and catastrophizing.  The multidimensional aspects of fibromyalgia suggest that more than one part of the brain must be  
involved. There’s pain and then there’s the added problems that often come with pain – distress, anxiety and worry There’s also more to pain that just pain. Pain can be accompanied by catastrophizing thoughts and feelings of unpleasantness that are separate from the pain itself. These “pain plus” symptoms are common in fibromyalgia, and they imply different areas of the brain are affected as well. This study sought to understand both where the pain problems and pain plus symptoms that can make pain so much worse come from in fibromyalgia.
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 Hard Choices: The Neurologist, the ME/CFS Expert and the Spinal Lesion: Corinne at Dr. Peterson #12
March, 2014 “Recognize your disabilities but emphasize your possibilities” ~ William Arthur Ward Allow me to apologize for my tardiness. I’m sorry to be posting a blog that happened almost a year ago! But with all the visits and tests that resulted after finding the spinal cord lesion in 2013, it has taken me awhile to catch up … but I’m just about there!! 
Thank you for your patience. ~ Corinne 
Summary of My Previous Blog 
Coming Full Circle – The Mayo Clinic – Twenty Three Years Later :  Corinne At Dr. Peterson etc.
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 IOM Swings For the Fences: Proposes New Name and Definition for Chronic Fatigue Syndrome 
The title of the report “Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining an Illness” said it all. The committee spent almost a year and went further and deeper into the literature on  ME/CFS – ploughing through over 10,000 documents – than anyone has before. Given that kind  of effort perhaps it’s not surprising that they felt disposed to swing for the fences. Not only did they propose an entirely name – one with no connections to the past – but they also redefined how to diagnose it. . . . . . 
The committee proposed that chronic fatigue syndrome or ME/CFS or ME or whatever you want to call it, whould henceforth go by the somewhat awkward sounding, but nevertheless very descriptive “systemic exertion intolerance disease”
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6 Breathing Tricks To Help You Fall Asleep Faster Tonight
There's no question that many of us would like to improve the quality of our sleep each night. Tossing, turning, waking up frequently, struggling to fall back asleep -- and that's if we can even drift off in the first place.
We are notorious for allowing bright screens into the bedroom and daily doses of anxiety to hit the pillow alongside our heads -- seemingly subconscious habits that leave us annoyingly alert rather than calm and relaxed. One of the best ways to bring the body into its relaxed state is one we shouldn't have to think about: breathing. You read that right. Proper inhales and exhales have become a lost art among today's fast-paced, highly stressed society, robbing us of one of the best (not to mention free) tools for logging quality shut-eye. Taking the time to address your breathing could be just what you need to shut down your stress and solve your sleep problems, killing the proverbial two birds with one soothing stone.
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The Fibromyalgia Exercise & Diet Guide by David Jenkin

 I am a personal trainer and exercise rehabilitation instructor. Together with Martin Westby, who is the editor of the popular Fibromyalgia Magazine, I have recently written an 85-page self-help exercise guide especially for persons living with Fibromyalgia and similar, related pain conditions.
The guide covers the different types of exercise, the benefits of exercise, how to pace yourself so as not to overdo it while ensuring you're working hard enough, a full home exercise programme (can be done seated, standing or a mixture of both), a full swimming-pool-based exercise programme, and nutritional guidance as well.
The guide is generously priced at just £14.95 including postage and packaging.
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Fibromyalgia: Getting Our Lives Back--Success Stories on the Guaifenesin Protocol
Published on Feb 2, 2015
Learn more about Fibromyalgia and a safe, effective treatment that has helped thousands of fibromyalgia patients feel better.  Follow 11 fibromyalgia patients on their journey back to good health.


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 Fibromyalgia: It's Real It's Manageable What You Can Do

 Published on Feb 16, 2012
The symptoms of fibromyalgia include long-term, body-wide bread and tenderness in the joints, muscles, tendons, and soft tissues --other. Dr. Andrew Gross, UCSF Rheumatology Clinic Director, Discusses how to fibromyalgia and manages the syndrome. Series: "UCSF Osher Mini Medical School for the Public"


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11 February 2014 newsletter
In this edition we reveal that sobbing decision makers are desperately trying to persuade claimants not to lodge appeals following an unsuccessful mandatory reconsideration decision maker begging please don't appeal.
It is the first evidence that DWP staff are coming under huge pressure to meet targets for cutting appeal numbers for benefits including employment and support allowance (ESA), personal independence payment (PIP) and disability living allowance (DLA).
Combined with the dirty tricks we revealed back in December that the DWP use to try to prevent claimants getting a mandatory reconsideration, these latest arm twisting techniques make it even harder for claimants to get the benefits they are entitled to.
We’ve updated our ESA, PIP and DLA appeals guides to tell members about the DWP’s tactics and explain how to make sure you don’t get caught out by them.
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A personal  note from Vicky
The photo is of Devils Dyke.  I went for a walk up there the a couple of weekends ago.  It was bitter but I dressed as though I was going skiing and stayed warm.  There were lots of steps to get out of the valley and was glad of my fitness as some of the people I was with really struggled.  I’m told there are some very rare orchid in the valley so intend to go again when they are out, perhaps with a picnic.
Also:
Education: What's a trigger point?
Video of the week: How to use Spiky Balls
Success Story: Jeni Webb
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I hope this has been useful to you.  I wish you well on your journey to transform your life.  We will overcome!

Stella

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 N.B. I would like to point out to you that the information in my FMS eNews blog is passed on to you mainly from other sources. 
Links are given to the original articles. I take no responsibility for their accuracy but freely give them publicity if I think they might be of interest to my readership. 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. Any advice or recommendation of a medical or legal nature should always be discussed with a qualified professional.
I also include various awareness items, benefits issues, as well as general health considerations. Anyone wishing to reproduce any of the included items in printed form should seek permission from the originators.
Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr. who died in May 2011.
This eNews is my personal offering to fibromyalgia sufferers and their carers and is not related to any other organisation or charity.
If you don’t already get reminders when each new FMS eNews is posted, please send an email to fmsstella@gmail.com and you will be added to the emailing list.

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