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FMS eNews 04/04/15

Fibromyalgia Awareness Day Countdown

 Five weeks to go before Fibromyalgia Awareness Day!

 2015 Raising Awareness - Let's Get The Ball Rolling
Details of plans can be found in the April Fibro Flare Magazine (PDF) on pages 23-29, or below.
And the rest of the magazine is pretty good too!
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WORDz for the WEEK

 215.  There is a huge difference between accepting the inevitable and expecting it!!!!
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Lifestyle Changes for Improving Fibromyalgia & Chronic Fatigue Syndrome

 No doubt your life has changed dramatically since you got sick -- chronic illness does that to you! You don't get to choose a lot of those changes, though. This week, we're focusing on changes you CAN control in order to get your life, and your health, on a better track.
We'll look at lifestyle changes, good and bad habits, reaching your goals and much more. Take the things you can apply now and leave the rest for later. It's all about baby steps, right?
Take care of yourself!
Adrienne Dellwo
Fibromyalgia & Chronic Fatigue Syndrome Expert
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 Get Your Body Ready for Spring
The first thing you do to get your body ready for spring is to remind it that going from indoor activities -  Sitting, reading, watching TV, etc. to outdoor activities - Pulling weeds, raking leaves, riding bikes, etc. is a big, big jump and one that can cause a little weekend warrior syndrome.
You know, when you're like - I can totally ride my bike 30 miles!  Even though you haven't ridden a single mile in weeks and then you try it and you feel like you're going to die the next day.
Like that.
Paige Waehner, Exercise Expert
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 Potassium-Rich Foods

Potassium is a major dietary mineral that you need for a number of reasons. If you eat lots of fruits and vegetables, you're probably doing fine, potassium-wise. You don't eat enough fruits and veggies? Well, now you have another reason to up that intake.

 Shereen Lehman, MS
Nutrition Expert
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How Malic Acid (Malate) Helps Fibromyalgia Pain
Fibromyalgia is a crippling chronic condition estimated to affect around ten million Americans. Despite increasing acknowledgment of fibromyalgia as a serious illness, and despite multiple attempts to treat its symptoms (generally widespread muscle and joint pain, chronic fatigue, fibro “brain fog,” and more, depending on the individual), we still don’t have a clear biochemical or neurological account of what fibromyalgia really is, why it causes the symptoms it does, and, perhaps most importantly, how to effectively treat the condition itself rather than just its symptoms. . . . . . . While there are multiple supplements increasingly used to regulate fibro patients’ vitamin levels, I’ll discuss only one of them in this article: the supplement malic acid (or malate).
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Bad Relations: Study Finds Fight or Flight Response Tied to Pain in Fibromyalgia
We know that increased activation of the sympathetic nervous (fight or flight) system is present in fibromyalgia but is it contributing to the pain there? Martinez-Lavin (“When Stress Causes Distress”) has been hypothesizing that it’s been a key pain driver in FM for years. He’s shown that levels of norepinephrine – the neurotransmitter that turns the SNS on – are positively correlated with pain in FM. The higher the NE levels – the higher the pain level. He’s also shown that FM patients in severe pain tend to have alterations in some genes that control sympathetic nervous system functioning.  The authors of this paper suggest that these findings suggest fibromyalgia may be similar to several types of chronic regional pain syndrome (CRPS).
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 More Musing on Malaise
If ‘malaise’ doesn’t adequately describe my dreadful condition after too much exertion, it does fit another consequence of ME/CFS. After so many years of trying to pace myself successfully (whatever that means, since my over-taxed level seems to change from week-to-week or even day-to-day), a kind of ‘malaise’ has settled like dust into my bones and brain, bringing boredom and lassitude (mental weariness, listlessness or languor). Let me explain. On crash days, I fester in bed, trying to weather the head-to-toe pain,  bleary eyes and brain buzz.  I can’t read, talk on the phone, or even communicate much with my husband. The only distraction might be watching some mindless streaming true-crime video with my IPad perched on my pillow. This is far from malaise.
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 Partners: Autoimmune Organization Makes Urgent Call For Fatigue Research

 Autoimmune Fatigue Chronic fatigue syndrome (ME/CFS) and fibromyalgia aren’t the only disorders being shortchanged by the paucity of “fatigue”research.  We’re not talking about ordinary fatigue. There’s a dramatic difference between normal everyday “fatigue” and the kind of “profoundly debilitating fatigue” that can affect every part of one’s life. Citing a nearly 8,000 person online survey, the American Autoimmune and Related Diseases Association asserted that the often disabling fatigue found in autoimmune disorders should become a serious research focus. The survey indicated that profound fatigue is probably the most common, debilitating and most poorly treated symptom people with autoimmune disorders have to deal with.
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 Barriers Falling: Psychiatrist Slams Pace Trial, Proposes Antivirals for ME/CFS
Doctors on Missions Dr. Thomas Henderson and Dr. William Pridgen are on similar missions. They’re both asserting doctors in their respective fields are missing the boat. Henderson, a psychiatrist, asserts herpesviruses are a major issue in misdiagnosed chronic fatigue syndrome adolescents and patients. Dr. William Pridgen, a surgeon, proposes antivirals and anti-inflammatories are knocking down herpesvirus infections in people with fibromyalgia. They’re bucking strong headwinds for sure, but their message is getting out there, and it’s getting into surprising places.
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 Big Studies – Big Possibilities: Montoya and Unger on Their Big Chronic Fatigue Syndrome Projects

 Dr. Elizabeth Unger 
The Multi-Center ME/CFS Experts Study
Unger’s statement that the seven site ME/CFS experts study will help produce an evidence-based definition makes one wonder how long any definition is going to last. We’ve never, after all, seen a study this big (@470 patients) and this comprehensive looking at the symptoms and characteristics of people with chronic fatigue syndrome.
Moving Slowly 
The studies must be very complex. Two years ago, Unger presented some if its findings at the FDA Workshop. A year ago at the IACFS/ME Conference she stated they were “scrubbing” the data. Now she’s reporting they’re beginning to write the papers. Maybe all good things do take time.
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Why We Sleep Better In Cooler Climates
The Question: Why do we sleep better in fresh air?
The Answer: There's nothing quite like the brisk spring air floating through an open window. In fact, you could even argue that it helps you sleep better -- and you'd be correct. That's because when it comes to drifting off to dreamland, our brains simply prefer to do it in cooler climates, says Natalie Dautovich, Ph.D., an environmental scholar at the National Sleep Foundation.
"Fresh air can have a cooling effect and we know that a cool bedroom environment is key to getting a good night's sleep," she told The Huffington Post. "We also know there are a lot of positive associations between fresh air and relaxation, and when we feel relaxed and comfortable in our environment, we're more likely to feel sleepy."
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10 Things Not to Say to Someone with Fibromyalgia
Speaking with Kindness and Respect
Fibromyalgia, like many chronic health conditions, is very difficult to cope with. However, more difficult than that is the wide range of symptoms and the lack of understanding associated with it. It’s
therefore not surprising that people struggle to know what to say or, more importantly, what not to say.
Here are 10 things not to say to someone with fibromyalgia.
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Manage Pain and Boost Energy Naturally with Infrared Heat and Negative Ions
Far Infrared Heat is the invisible part of the Sun's spectrum, not to be confused with ultraviolet light which may damage your skin. FIR is the safest form of energy that is directly transmitted onto objects because of its specific wavelength. The human body can easily absorb far infrared heat because of its deep penetrating ability. Studies have shown that far infrared waves can actually penetrate up to 2-3 inches deep into muscular tissue and ligaments.
Far infrared heat can be found in two forms, direct and indirect. Direct far infrared provides the deep heat to warm you up without raising the temperature of the surrounding air. Indirect Far infrared heat comes to us through absorbing the excess energy transmitted from plants or animals that are in close proximity to us.
Read more
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Drug Muggers

 Vitamins Needed to Boost Mood and the Drugs that Smash Them
What makes one person depressed and another happy? Certain conditions are commonly associated with depression such as hypothyroidism, Crohn’s disease or colitis, migraines, diabetes, chronic infections and cancer. Lifestyles such as drinking alcohol and smoking are correlated and the biggest secret of all is drug mugging! In my book Drug Muggers, I describe how drugs “mug” you of vital nutrients which you need to produce “happy” brain chemicals termed neurotransmitters.  Today I’ll teach you what popular drugs lead to depression just by the mere fact they mug you of vitamins. No amount of Zoloft replenishes the nutrient steal.
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Welcome to the April 2015 UK Fibromyalgia Research  Newsletter
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 Effective Treatment of Chronic Fatigue & Fibromyalgia - Dr Jacon Teitelbaum

Published on Apr 3, 2014
Dr. Teitelbaum presents at the 2013 ABIHM conference.
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 You Can Beat Fibromyalgia...Naturally! - Dr. Michael Johnson

Published on Dec 5, 2012
www.drjfibrobook.com
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A personal  note from Vicky
As I think you know I am away at the moment cycling in Vietnam. Some of you asked what preparation I’ve been doing for this trip.  I’ve worked out on the spin bike.  There is no freewheeling or stops at junctions on a spin bike and so hopefully an efficient way of training- time will tell. Up to 50 miles in a day with temps in the high 30’s and high humidity will certainly be a challenge.
As many of you will know I applied to take part in the series of ‘The Island’ last year with Bear Grylls.  I got as far as the audition and when I didn’t make the cut, looked for an adventure to replace it - this is it.  I see the programmes are due to be screened soon, so will watch with interest and no doubt relief at not being there.
Also:
Education: THE VISUALISATION IN PILATES
Video of the week: The Side Bend.
Success Story: Linda Stewart
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Next week I shall be posting the blog on Friday as I am going away on Saturday.  It is unlikely that I will be able to produce one the following week, but we shall see!
Meanwhile, I wish you and your loved ones A VERY HAPPY EASTER.

Stella
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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 PURPLE like the dividers.  This blog gives just a taster of each article which can be viewed in full through its link.  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 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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