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FMS eNews 11/03/2016

Last weekend my son visited us, mainly because it was Mothering Sunday, but also to help me set up and get into using my new iPad.  Quite a revelation, and a steep learning curve - so different from my laptop.  
I am pleased to tell you that this blog has been approved by the Fibro Bloggers Directory. and their badge is now displayed in the right hand column of this page. Click on it to find other fibromyalgia blogs.  Some I feature here but I can't include them all!
If any bloggers are reading this - this is for you!  If you would like to boost your blog especially if you have less than 300 followers, you might like to participate in the Liebster awards


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WORDz for the WEEK

263.  It's really funny how one turn of a corner can change your whole path.


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Weathering the Change of Seasons

Does the weather impact your symptoms? Are you sensitive to heat and unable to cool yourself off? If so, this can be a tough time of year -- temperatures can fluctuate wildly and weather patterns can be crazy, wrecking havoc on your well being.
This week, we'll look at what research shows about weather, how to deal with temperature sensitivity, and some symptoms that can be worse when it's warmer out.
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert


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Alannah Danielse's Fibromyalgia Survey
Can You Help?

Hello everyone, I hope you are all doing well.
For my year 11 research project, I have decided to research how Fibromyalgia affects families and significant others. I plan to use the information I collect in a way that would educate communities, families, friends, partners, etc. about how life changing it can be. I am offering my full support and will keep everything anonymous (unless you wish to give your name) to keep the discretion and privacy everyone deserves. 
Please read through the surveys carefully, as there are 3 DIFFERENT surveys; 1 survey for family members, 1 survey for significant others, and 1 survey for people who are diagnosed with Fibromyalgia.
I am always available to contact either through facebook messenger (Alannah Danielse) or my email, alannah_fibro@outlook.com
Contact me if you have concerns, general comments, feedback, if you need help answering the questions and/or you wish to post the surveys back to me. 
How to fill in these surveys:
First you need to download the surveys to your computer (they are word documents)
TYPING: To answer the comment questions, you need to delete the lines that look like this: _____________ and then type your answer in the blank space. For questions that have ‘please highlight the answer’ you can change the colour of the font or use the highlighting tool. Once finished you can email me the surveys back with the email I provided above.
WRITTEN: To answer the questions for printed pages, you need to first print them. Then just fill your answers in on the lines that look like this: ____________ and when a questions says ‘please highlight the answer’ you can underline, circle, or highlight your choice. You will need to scan your answers and send them to alannah_fibro@outlook.com

Sufferers' Survey

Significant Other Survey

Family Member Survey


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Tea & Wisdom ~ 4 Coping Strategies When Newly Diagnosed With Fibromyalgia

You've been dealing with wide spread pain for what feels like ages.  The fatigue you experience goes far beyond 'just being tired'.  The words 'invisible chronic illness', and 'central nervous system disorder' are starting to become familiar terms.  Then it comes.  A doctor gives the diagnosis of Fibromyalgia, tells you it may be a life long condition, and you feel overwhelmed with the thought that this is your new reality.  What now?  Let's look at 4 helpful coping strategies that can get you through the initial stages of being diagnosed with with Fibromyalgia.

  1.  Read! Read! Read!
  2.  Be Proactive In Your Healthcare! 
  3.  Improve Your Food Quality
  4.  Maintain Perspective 

Read more about each . . .


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Subject: Responding effectively to fibromyalgia contraindications

And other subjects . . .


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7 Harmful Myths About Chronic Pain


Myth #1– Taking pain medication makes you an addict
Myth #2– People who take pain medication are just weak and lazy
Myth #3 Exercise would make everything better
Myth #4 Pain can be overcome by just trying harder
Myth #5 People in real pain have obvious physical symptoms
Myth #6  Pain is just a part of getting older
Myth #7 If doctors can’t find a reason for the pain, then it must be made up

Find out the FACTS about these myths . . .


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Transcranial Magnetic Stimulation for Fibromyalgia


Read the article . . .


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Turning Fear into Gratitude


It’s amazing the number of times that I run across a book on my Kindle that downloaded years ago only to finally read it and think “Wow I’m glad I waited!” It’s not that the book wasn’t amazing but that what I learned from the book was something I needed when I finally read it. I likely wouldn’t have been ready for it if I’d read it earlier.
Such, was the case when I recently read Everything I Know by Paul Jarvis. I picked this book up about two years ago when it was available for free. With so many books on my Kindle and with school books using up most of my non-fiction reading time it took me a while to get around to it. When I finally opened it I had no idea what to expect.
What I found was a book that spoke to me on many levels, but one topic in particular really stood out to me. It was the topic of fear and how fear often keeps us from doing what we should.
Continue reading . . .


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Working with Chronic Illness

The question of how to keep working when you have chronic illness comes up quite often. It’s been a common topic of discussion around my house lately, as I approached the end of my degree and considered what was next.
When I first began my journey to finish a degree (in 2009) I wasn’t really sick. It was pre-Fibro, and while I’d been sick but I was doing better. But, by two semesters into my attempt at a dual-degree I was sick and fighting Fibro. In fact, I had to drop a class just to finish that semester. Then for the next two years school wasn’t even on my radar.
Read Julie's story of fibro and making money . . .


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How many times have you heard that to improve your fibromyalgia you need to improve the quality of your sleep? I’m guessing that it’s more times than you care to count. The reason being that sleep is the absolute number one thing that is going to help you to feel better. It’s therefore the top advice everyone will give you. The problem is, sleep is the most difficult thing in the world to resolve. Or at least it feels that way!
Disruptive sleep is a primary symptom of fibromyalgia. Individuals can experience various different sleep problems including difficulty falling asleep, waking continually through the night, poor quality sleep and insomnia.
It’s so ironic that we suffer from unrelenting fatigue (with some spending all day practically falling asleep) and yet when it comes to bed time, sleep just doesn’t happen. Some of us will get to bed time and actually get a second wind and feel wired! Does that sound familiar? If so you might want to look into getting your adrenal function tested.
Find out which supplements are recommended . . .


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WEEK OF MARCH 7, 2016 FIBROMYALGIA AND ME/CFS NEWS

Top stories …

  • The National Institutes of Health now has a website dedicated to information about the upcoming Intramural Study on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Patient enrollment begins this summer.
  • Time sensitive: The Solve ME/CFS Initiative is hosting its first 2016 webinar on Thursday, March 17, at 1 p.m. ET. Dr. Susan Levine will discuss “The Future of ME/CFS.” This event is free. Register here. 
  • From Pain News Network: “Sherri’s story: A final plea for help” The tragic story of a chronic pain sufferer who took her own life because her suffering was too great.
  • Making progress: Fibromyalgia News Today gives us a few more details on a test that can differentiate between fibromyalgia and lupus.

And much more besides . . .


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How Marijuana Helps Stop Chronic Pain (Guest Post)

Medical marijuana has been shown to be far more effective to treat the symptoms of fibromyalgia than traditional medications. Marijuana treats not only the pain associated with fibromyalgia, but other symptoms as well, including insomnia, fatigue, restless legs syndrome, depression, and anxiety. So when Jason Duke of MedicalMarijuanaHelp.com offered to write a guest post about how marijuana helps stop chronic pain I was happy to take him up on his offer.
Read the article about marijuana . . .


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Awareness of Fibromyalgia in Men.


Welcome to FibroMen - We're Raising Awareness of Fibromyalgia in Men.
The aim and focus of this site is fibromyalgia in men - raising awareness of the syndrome and providing information to help men, their families, partners and carers with diagnosis, treatment and coming to terms with the condition. FibroMen was established by a long-term "FibroMan" who failed to get treatment at the start of his symptoms, who put it down to over-exertion and ended up in hospital on a few occasions and who now has life-long auto-immune conditions on top of fibro - the message is simple "Get Checked Out!" - if it's fibromyalgia you probably won't be cured, but you'll learn how to cope and live with it. FibroMen exists to raise public awareness of fibromyalgia in men and to inform, support and empower sufferers, their families and carers.
Find out more . . .


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Fibromyalgia News Today Weekly Digest


See below for a brief overview of last week's articles. Click through to read each piece in its entirety:

  • Fibromyalgia Distinguished from Lupus with 100% Specificity Using New Test
  • Fibromyalgia Pain May Also Result from Neurogenic Inflammation of Peripheral Nerves, Review Argues
  • FM and Other Chronic Pain Conditions Managed with Psychotherapy, Review Says
  • Fibromyalgia Patients May Soon See a THC Patch Treatment

Find synopses and links to articles here . . .


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When “I Get To” Turns Into “I Have To”


What do you do when your “I get to” turns into “I have to”?
My husband and I just had this discussion the other day. We were talking about something that I was going to do that evening and I referred to it as an “I have to”. He corrected me by saying it was actually an “I get to”.
I understand his desire to help me re-phrase and re-think. He wants me to be happy and positive. Who wouldn’t want that for their wife?  He also knows I’m working hard on my naturally cynical, pessimistic nature. (Well, actually, God’s working on it – but I’ve finally quit fighting as much and I’m letting Him sand this clay creation of His.)
Read on . . .


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Your Guide to Fibromyalgia for March 8th

  •  How to Deal with ‘Fibro Fog’
  •  Common Fibromyalgia Symptoms in Women
  •  Is It Fibromyalgia? Or Something Else?
  •  Best Treatments for Headache Relief

Read more about each . . .


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Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS) Research Center Makes Good


Running a fibromyalgia and ME/CFS research center is supposed to be a tough sell. Tell that to Jarred Younger and the folks at the University of Alabama at Birmingham. Younger's lab is booming and the best, this ambitious researcher believes, is yet to come.

Find out more about a bright light in the FM and ME/CFS universe . . .


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Lactate – Is it Everywhere in Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)?


Lactate – Is it Everywhere in Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)
A recent gut study suggested that altering the gut flora could reduce gut lactate levels and improve sleep and vigor. But lactate - a byproduct of anaerobic energy production - is not just found in the gut. It can be found anywhere where problems with energy production are present.
A better question might be where is it not increased in ME/CFS/FM? 
Check it out . . .


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Accessible Travel Online Resources


Hard of hearing or vision-impaired? A wheelchair user or slow walker? Fibromyalgia, MS or spinal-cord injury? None of these should stop you from experiencing the joy and benefits of travel.
We at Lonely Planet believe that travel is for all, no matter what their abilities or limitations. We also know that the first barrier to travel for many people who have access issues or a disability is a lack of information, combined with a fear of the unknown.
We hope that this collection of online resources will go some way towards filling the information gap and alleviating unfounded fears, either by providing information directly or by introducing you to countless people who haven’t let their disability get in the way of their love of travel.
Read more: 

Download the free PDF HERE  


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Heavy Use of Social Media Linked to Sleep Problems

New research suggests spending significant time on social media is associated with sleep disturbances in young adults.
University of Pittsburgh medical school researchers discovered that those who spend a lot of time on social media during the day or check it frequently throughout the week, are more likely to suffer sleep disturbances than their peers who use social media less.
Read about the research . . .


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We know how you feel!


The Fibromyalgia Crusade is a patient united awareness campaign promoting information, resources and support to aid in understanding and managing Fibromyalgia Syndrome.
We believe every patient has the right to effective medical care and the responsibility to pursue quality of life improvement through a balanced, total-body approach towards managing chronic pain and illness.
Read more about the crusade . . .


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WALK IN MY FIBROMYALGIA SHOES IF YOU WANT TO.

Lately, I am thankful for my thick skin as people can be so insensitive and not even realise. If I am to do this subject any justice I can not insinuate that this is isolated to strangers, loved ones and family can be equal as harsh, all be it with a loving smile.
A fellow chronic illness blogger wrote a superb blog recently How to make your chronically ill friend feel worse.  It is so true in so many ways.
People open their mouth and seem to speak before they think of how the words will affect us. This leads then to my writing this piece and offering people to walk in my shoes. You claim to understand how I feel, you know all about my illness and even put your own spin on it. You know what medicines are best, you have a friend who has the same illness and you read about it in a magazine once. I am sure it will be easy for you based on your expertise.
Continue reading . . .


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Life With an ‘Invisible’ Illness


When you feel sick but look fine, people can misunderstand.
Cynical looks from strangers when you park in a handicapped accessible space. Classmates who wonder why your child uses the elevator. Raised eyebrows when you can't volunteer at church. When people have an "invisible" illness – coping with pain, exhaustion or other unseen symptoms – uncomfortable situations can arise.
Here's how people deal with the pressure to act healthy, and why a little empathy goes a long way.
Read on . . .


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This section is included because it provides general health education, but not necessarily fibro related.





Newsletter! March 11th, 2016


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That's all for now folks!  I hope it's enough to keep you going. There's certainly variety.
Keep as well as you can
Stella

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or leave your comments below under 'Post a Comment'


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N.B. The links on this my FMS eNews blog are in the BROWN text, usually in the title of each article but occasionally elsewhere too. Some titles have no links in which case the title is in GREEN like the dividers.  This blog gives just a taster of each article which can be viewed in full through its link.  The sites included are in alphabetical order.  If you have any navigation problems, let me know. 
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 judgments, 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 any way 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 although I do work in conjunction with other bloggers and Facebook groups.
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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