FMS eNews 07/03/15

This is a countdown!  There are 9 more weeks before Fibromyalgia Awareness Day.  What are YOU doing to raise awareness?  I have added the above combination of logos to my Facebook page.  The middle one is adapted from https://www.facebook.com/HiddenDisability  Can you do something similar?  Tell your FB Friends all about it.

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WORDz for the WEEK

212.  I sometimes give myself admirable advice, but I seem to be incapable of taking it.

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How to Live with Brain Fog; Taking Charge of Life

Adrienne Dellwo

The cognitive dysfunction of FMS and ME/CFS (aka brain fog or fibro fog) can be one of the hardest symptoms to live with. (More than anything, it's what made me leave my old job.) Get some help for living with the fog, below.
Also this week, we'll look at several things it pays to get on top of, including stress, how you eat, pacing, your sex life and more. That starts up top and continues under More From About.com. We've also got a couple of new glossary entries down at the bottom.
Take care of yourself!
Adrienne

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Get More Vitamin D

Shereen Lehman

Your body makes vitamin D when your skin is exposed to UV light from the sun. But, it's tough to get enough sun exposure in the winter in the northern latitudes so it's a good idea to up your intake of vitamin D foods or take a supplement.
So this week, I've got some information on food sources of vitamin D. Take a look, then come let me know what you think on Twitter or Facebook.
Shereen Lehman, MS -Nutrition Expert

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How to Diagnose Fibromyalgia

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A MEMORABLE APRIL WEEKEND WITH FUN, LAUGHTER & FM NEWS

If you have not booked for our 6th international Fibromyalgia Conference on April 24/27015, it is not too late. Once again the cost is as low as we can make it to enable folks to enjoy the education, research news, make new friends, as well as entertainment, fun and laughter. You will have a chance to talk to the speakers personally 1-2-1 - almost a private consultation as part of the conference weekend and you will be among folk who understand your aches and pains. It has been said, “Conference is a great educational
and social experience”. We aim to please.

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Fibro Flare Magazine February/March 2015, Issues 10 & 11




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Living Well with Fibromyalgia
March Edition - Invisible Tears

I’ve been sad. I’ve been very sad. I was sad and cynical and bitter. I know you know exactly what I’m talking about: the lock-yourself-away, pray-for-never-ending-sleep, wonder-why-you-bother-to-wake-up type sadness or, when you try to think positively and tell yourself that there are always people who are worse off, you wonder if you are THE worse off (some-one has to be, right?)
I know that most, if not all, of us suffer from these feelings; at the time it felt like no-one could ever have felt the sadness that I was feeling. So my way of reminding all of us that we are not alone is to choose a theme for this issue that resonates so completely with us: Invisible Tears.

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 How Broken Are You?

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FIF

 Fibromyalgia is a common disorder, affecting about 5% of all women.
It is characterized by widespread pain and many other symptoms
                     
                               Fibromyalgia is not a psychiatric disorder.
                               It can now be confidently diagnosed and treated.
                               For more information see this website.

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5 Tricks for Reducing Fibro Pain with Pressure Points

When pain afflicts the body it can disrupt – and in some cases completely dishevel – our lives. For those with chronic pain conditions such as fibromyalgia – the pain is often constant and widespread. It can be difficult to describe to someone who hasn’t experienced it – but some have equated it to having flu-like symptoms that simply won’t go away. Symptoms can include tender muscles, aching joints, constant fatigue or exhaustion, digestive problems, difficulty sleeping, trouble thinking clearly and much more. . . . . So where are the most effective pressure points for relieving pain? Lets take a look at 6 common relief points for people in pain:

Shoulder or Neck Pain
     #1 – Neck
     #2 – Shoulders
Lower Back Pain
     #3 – Lower Back
     #4 – Ankle Point
Headache
     #5 – Forehead

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ENFA Pan European Survey 2015

Please find below information regarding a survey being carried out by ENFA (European Network of Fibromyalgia Associations).
Please share this message with your group members, and on your facebook pages etc .  We need  to get as many people completing the survey as possible.
Collecting information for Fibromyalgia international Awareness Day 12th May 2015 ENFA has produced a survey to discover how fibromyalgia is treated throughout Europe. This will enable us to give evidence to the decision makers about any differences, expenses incurred and the widespread nature of the condition.
To do this we need as many people from as many different countries in Europe as possible. It will not be affective with only a few hundred responses, we need thousands!!!

Start Survey

Survey closes 14th April 2015
Thank you for reading this. If anyone has any questions then please email the office on head.office@fmauk.org.

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The Clock Was (Is) Ticking: Major Study Suggests ME/CFS is Hit and Run Disorder 


It’s a major study indeed – the first, I believe, to come out of the Hutchins Foundation’s Chronic Fatigue Initiative and the media is picking it up quickly. The Hutchins Foundation doesn’t mess around. They’re putting $10 million into researching chronic fatigue syndrome. They do big rigorous studies with top researchers. This study with its carefully selected patients from across the country was loaded with ME/CFS expertise. Besides Mady Hornig and Ian Lipkin of Columbia, Dr. Montoya, Dr. Peterson, Dr. Klimas, Dr. Bateman, Dr. Levine and Dr. Komaroff were listed as co-authors.

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Gaining Ground: Influential Magazine Touts Seriousness of Chronic Fatigue Syndrome 
“The fatigue that affects ME/CFS patients is as different from regular, end-of-the-day tiredness as Ebola is from the common cold.” O’Rourke 

Getting published in the New Yorker is the holy grail for many writers.  It’s legendary commitment to rigorous and well-formed journalism has made it the elite journal of American letters for over eighty years. One of the “pre-eminent forum(s) for serious fiction literature and journalism,” the New Yorker was one of the few magazines to survive the assault on print journalism virtually intact. It’s that good. Laura Hillenbrand’s  2003 essay “A Sudden Illness” – the first chronic fatigue
syndrome piece to appear in the New Yorker  that I know  of – won the National Magazine Award.

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Calming Currents: One Fibromyalgia Patient’s Recovery/Recovering Story 

(We embrace recovery/recovering stories with the acknowledgement that fibromyalgia and chronic fatigue syndrome are heterogeneous conditions and what works for one person may not (or may :) work for another.) Someone with a success story who has financial ties to the product or technique they used to improve or recover obviously throws another factor into the equation.   We’ve chosen to include those stories  for two reasons: (1) a surprising number of people who have recovered or improved greatly do end being associated with whatever helped them and (2) we want to provide information on all legitimate options.  Thanks to Linda for sharing her story. )

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Is Fibromyalgia A Mitochondrial Disorder? 

We tend to think of fibromyalgia as a central nervous system disease but that focus has tended to obscure the growing evidence of problems in the body. We don’t tend to think of fibromyalgia as an inflammatory disorder. It’s true that overt signs of inflammation are rarely found in people with FM but some studies suggest inflammatory factors may play a role.
Then there are the mitochondria. Mitochondrial dysfunction is thought of as a real possibility in chronic fatigue syndrome, but I’ve rarely associated it with fibromyalgia or pain.  It turns out, however, that multiple studies – most of them small – suggest that mitochondrial dysfunction could indeed play a significant role in fibromyalgia. Could fibromyalgia, whatever else it is – also be a mitochondrial disorder?

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Latest Story

What were the steps leading up to your diagnosis?

It started with the Epstein-Barr virus in 2005. When it wouldn’t go into remission my doctor called it chronic fatigue syndrome. Two years later I started to have severe muscle pain. When I finally saw a rheumatologist in 2007 I got the diagnosis of fibromyalgia.

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Lesser Known Fibro Symptoms

Most people who suffer from fibromyalgia are familiar with the condition’s many common symptoms. These include pain, fatigue, fibro fog, depression, anxiety, stiffness and irritable bowel syndrome. It’s likely that if you suffer from fibromyalgia, you will suffer from most – if not all – of these symptoms.
However, unfortunately, the list of symptoms doesn’t stop there. There are many other effects – mental and physical – that fibromyalgia patients experience, some more common than others.
Which of these less common fibromyalgia symptoms do you suffer from? How do you cope?

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Finding the Best Fibromyalgia Resources
Top Websites, Videos, and Books for Fibromyalgia Sufferers

Chronic pain is a very personal challenge, and every sufferer has to fight fibromyalgia in their own way. However, that doesn’t mean you’re on your own all the time, and while it’s up to you to reach out and investigate resources, there are plenty of helping hands at the ready.
The best way to stay in physical and emotional control of your illness is with a range of resources – fibro news, social support, and tips for daily management – that are both convenient and accurate.

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Email Campaign Archive

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Focal Point Round Up (February 28th 2015) N.I.

Section on ME/Fibromyalgia begins at about 22:45 and ends at about 29:00 (6:55 minutes!)

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Innovative Nutrient Helps Repair Damaged Mitochondria & Reduce Fatigue up to 45% 

Clinical trials have shown that NT Factor® can actually support the repair of damaged cell membranes - in effect reducing the cells' biological age and restoring mitochondrial ability to generate energy.
This is true whether the reduced energy/fatigue is from an illness like ME/CFS or fibromyalgia, a side effect of chemotherapy, or simply a result of aging. Studies done with severely fatigued patients in each of these populations demonstrated that NT Factor can support reduction of fatigue levels by as much as 45 percent.(1-3)

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Welcome to the March 2015 UK Fibromyalgia Research  Newsletter

Every month we collect all the relevant fibromyalgia research from around the world so that you can keep informed about your condition.
Back Issues of these email newsletters available here

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Fibromyalgia Articles

Chronic Pain Articles 1

Chronic Pain Articles 2

Sleep Well Articles

Future of Health

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A personal  note from Vicky

The picture shows the amazing view we had from the Shard.  My son gave me two tickets as an extra birthday present back in November and we choose a good day to use them as it was clear.  The 17.30 slot enabled us to enjoy the view in daylight and watch the sunset and the lights comes on.  Well worth a visit.
I had a Reiki session with Sue Fishbourne the other day from Hollytree Healing Centre.  I have seen Sue on and off for years now and find I always feel better after seeing her for a session. I was sceptical at first about Reiki but have found it has rebalanced my energies and often helped with emotional and physical traumas for me. Sue has kindly offered a £5 discount to anyone mentioning Fitness Function when booking. In addition to this Sue does various workshops and runs a monthly meditation group.
Her website is http://www.hollytreehealingcentre.co.uk
Have a great week!
Vicky x
Also:
Education: Are you wasting time?
Video of the week: How to do a spinal twist.
Success Story: Barbara Hope

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Newsletter! Feb. 28th, 2015

Newsletter! Mar. 1st, 2015

Newsletter! Mar. 2nd, 2015

Newsletter! Mar. 3rd, 2015

Newsletter! Mar. 4th, 2015 

Newsletter! Mar. 5th, 2015

Newsletter! Mar. 6th, 2015

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Next week I hope to tell you how the Joint Project team has decided to mark Fibromyalgia Awareness.  Meanwhile, enjoy the spring-like weather that is with us at the moment.

Stella

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Contact: fmsstella@gmail.com

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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.