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FMS eNews 19/04/14


Tomorrow is Easter Day, the day Christians remember that Jesus rose from the dead bringing New Life to all.  Eggs, newly hatched chickens, baby rabbits, young lambs, spring flowers are all symbolic of new life.  Such novelties abound at Eastertime. New life is something we could all do with!  See my comments at the end about last weekend!


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WORDz for the WEEK

164.  The bubbling brook would lose its song if you removed the rocks.



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Fibromyalgia International Awareness Day 12th May 2014


As part of our awareness campaign, FMA UK have arranged a presentation of their survey of people with fibromyalgia on the 12th May in The House of Commons committee room 19 from 18.00.

If you would like to attend please email pam.stewart@fmauk.org with your name(s) and the group you are representing by 7th May.
We would appreciate you writing to your MP, as they are bound to take notice of communications from their constituents.  You should always include your name and postal address.
We suggest you either ask to meet them at this event if you can attend or ask them to attend on your behalf if you are not attending.
The presentation will be sent out to all groups prior to the event so that you can use this to inform your local press.  They are likely to want a case study/personal story about someone’s experience of their diagnosis and treatment of fibromyalgia, so have this organised beforehand.
Thank you for your support in raising awareness among the policy makers.  This is vital if we are to get an improvement in treatment across the UK.
Pam Stewart
Chair of trustees.
Thank you for reading this. If anyone has any questions then please email the office on head.office@fmauk.org

Please do take action as Pam has requested.  Find your MP here 

http://www.parliament.uk/mps-lords-and-offices/mps/

Put in your post code, click on Go, then you will get contact details of your MP - post, phone and email.  So please help raise awareness of FM in parliament.  There's no chance of MPs doing anything to help us if they don't know about us.  We have the opportunity to tell them.  It's up to us.  I've written to my MP.  Will you write to yours?



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University of Brighton research project on Fibromyalgia

If you have been diagnosed with FM during the last twelve months and would like to participate in this study please read on . . . 

https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/Brighton_Study.docx

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From Adrienne Dellwo, your Guide to Fibromyalgia & Chronic Fatigue Syndrome



Adrienne Dellwo
This week, it's all about the nervous system in some form, starting with really important research on neuroinflammation in ME/CFS - basically, evidence that the ME part is accurate. That's below.
Then, we've got research showing the same nervous system dysfunction in fibromyalgia, ME/CFS, irritable bowel syndrome, and the painful bladder condition interstitial cystitis; plus a look at the weird things our nerves can do to us.
Down in Featured Articles, you can learn about some causes and risk factors.
Take care of yourself!

http://specials.about.com/service/newsletters/chronicfatigue/305343040b00016c3a002628.htm

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The Chronic Fatigue Syndrome & Fibromyalgia Diet
Eating for Symptom Management

A healthy diet plan is important for managing fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS). While it's not a "cure" and there is no magic diet that works wonders for everyone with these conditions, eating right can help you feel better, have more energy and boost your immune system.

As important as eating right is not eating wrong -- certain foods and drinks could be worsening your symptoms. It will take some trial and error to find what works best for you, but the information here is a good place to start.

http://chronicfatigue.about.com/od/copingwithfmscfs/a/cfs_fibrodiet.htm


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Low Dose Naltrexone, Inflammation and Pain: A Different Approach to Fibromyalgia


[outside the box]  Low dose Naltrexone is one of the more intriguing treatment options to emerge for Fibromyalgia and pain patients in recent years.  Not  only is it dirt cheap compared to many drugs but side effects are usually minimal.


Read more: http://www.cortjohnson.org/blog/2014/04/15/low-dose-naltrexone-inflammation-pain-different-approach-fibromyalgia/


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Does ground flaxseed have more health benefits than whole flaxseed?


Most nutrition experts recommend ground over whole flaxseed because the ground form is easier for your body to digest. Whole flaxseed may pass through your intestine undigested, which means you won't get all the benefits.


http://www.mayoclinic.org/healthy-living/nutrition-and-healthy-eating/expert-answers/flaxseed/faq-20058354


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Eating Gluten – A Quick Way to Muscle Pain and Weight Gain


You hear about it over and over again.  The gluten free diet is officially here to stay.  Dr. Oz, Oprah, Jimmy Fallon, The View, and every major news outlet has featured the gluten free diet is some form or fashion.   So what is the all the hype about?  Why do so many people gravitate toward this diet?  Why are so many talking about it?  The simple answer is – The Diet Works.

If you have heard about it and remain skeptical, consider reading on and making a more informed decision about whether you would benefit with changing what you eat.

http://www.glutenfreesociety.org/gluten-free-society-blog/eating-gluten-a-quick-way-to-muscle-pain-and-weight-gain


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Got Fibro? Now What?



Finally, after all the pain and fighting to be understood, you have a diagnosis – YIPPEE!
Umm…now what?
I have put together this short, downloadable guide for the Fibromyalgia Newcomer. By no means does it contain everything you will need to know but, I think, it’s a pretty good place to start.

http://fibromodem.com/got-fibro-now-what/

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Low Back Pain: What Can You Do?

Good and Bad Exercises for Low Back Pain

1. Lower Back Pain: How Exercise Helps
You may feel like resting, but moving is good for your back. Exercises for lower back pain can strengthen back, stomach, and leg muscles. They help support your spine, relieving back pain. Always ask your doctor before doing any exercise for back pain. 
Depending on the cause and intensity of your pain, some exercises may not be recommended and can be harmful.

See 4 more tips: http://www.webmd.com/back-pain/lower-back-pain-10/slideshow-exercises


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Many people with fibromyalgia are told that there is no cure and that there is nothing that can be done. Obviously we disagree and so does science. There are numerous published clinical studies that show that not only can fibromyalgia be helped but also stopped.


https://qy127.infusionsoft.com/app/hostedEmail/138123/8520cb161ea1fd6e


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Some fibro forums you might like - you may need to register/sign in.


My "Bad Day Box" - coping with flare ups

We all know those dreaded flare up days! I have a little trick I put together which helps a bit - my "bad day box". I got a really pretty box at a discount shop, and in there I have a few little treats to nurture myself when I'm having a real bad flare and have to stay in bed. Mine contains a couple of favourite comforting books, some lovely hand cream, bath salts (and epsom salts), some luxurious chocolate, a magazine or two (I've already read them, but thanks to fibro fog they'll be fresh to me the 2nd time around), a pretty little colouring book and pencils, a bottle of lavender and rose essential oil, a couple of letters and photographs which are special to me, a few cards and envelopes to write a wee note to a friend, and a cat toy to entice my kitties onto the bed to cuddle me. dipping into my bad day box always reminds me that I can try to love and care for myself even when I don't feel much worth it, and I recommend to try it out for yourself. What do you do to nurture yourself through the bad days? Bless!

http://www.patientslikeme.com/forum/fibromyalgia/topics/106735


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Fibro Isolation
I have been having trouble recently with my family supporting me in my fibromyalgia. . . . . 

Including the Spoon Theory.


http://www.patientslikeme.com/forum/fibromyalgia/topics/127203?utm_medium=email&utm_source=newsletter&utm_campaign=general_20140415

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The Fibromyalgia Companion is your guide to managing fibromyalgia symptoms like pain, fibro fog, fatigue and more so you can live your best possible life. How? Talking about the latest research findings and providing tips on exercise (ugh!), behavior change (*gasp!*) and how to get started when you think you can't or don't know where to begin. Or maybe you are humming along 

and just looking for new ideas. Stop by for a while. Learn something new. Reinforce what you've been doing. And of course, share your own experiences!

http://www.fibromyalgiacompanion.com/



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Fitness Function News


Small Daily Improvements are the Key to Staggering Long-Term Results

I just wanted to give you something else to think about. 
Most of us are a bit wonky which can effect the way the body performs.  This can be caused by various situations some of which we can address. . . . . . .

http://us4.campaign-archive2.com/?u=1f0fb2b9eada51a6fa54509ba&id=ec768556db&e=2a0fc40be9


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NEW TO MONDAY EVENINGS IN HORSHAM
Drop-in Class / Tai Chi Course

We are moving!  Our Monday night venue is changing from 12 May to 1st Roffey Scouts in Horsham.  We will be sad to say goodbye to St Leonard's Church Hall on Cambridge Road, where we've been since early 2013. Our new venue gives us the chance to put on an extra beginner Tai Chi course.  All of the details are below.  You are welcome to join us in Roffey, look forward to it.


http://us2.campaign-archive1.com/?u=75076062ba40962e2e364d5f4&id=14f0c8a728&e=751f85837c


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Petitioning Jeremy Hunt, Department of Health 

8 days to change medical history

Right now, the government is deciding whether to pass a new law, the Medical Innovation Bill, that will help doctors to find new treatments safely and responsibly for cancer and other diseases.

Sign this petition today!

http://www.change.org/en-GB/petitions/jeremy-hunt-department-of-health-8-days-to-change-medical-history?tk=2y8-y4MtYklqMB8-G2TNZxWtLbpnJPaYNk3TvgznkBo&utm_campaign=petition_update_experiment&utm_medium=email&utm_source=petition_update


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Join us for a LIVE Google Hangout with TV’s Dr Ranj

Tuesday 22nd April @ 4pm

Dr Ranj will be hosting the hangout and will be joined by Lord Saatchi and guests to discuss the Medical Innovation Bill (Saatchi Bill).

Join us here: http://bit.ly/1lbPzlZ

Tweet your questions: #SaatchiBill

It’s been an exciting week for media coverage. On Monday the Telegraph published a piece on Prof Walker, ‘This isn’t quackery, its good practice.’
http://bit.ly/1hElo99

And the British Medical Journal published a piece by Mike Rawlins, President of the Royal Society of medicine: ‘The Saatchi Bill will allow responsible innovation in medicine’.

Read: http://bit.ly/QriZCT

Look forward to seeing you at our Hangout: http://bit.ly/1lbPzlZ

Thanks,
Liz
Saatchi Bill Team


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GreenMedInfo.com Special Announcement, April 10th, 2014

Daily Newsletter, April 13th, 2014

Daily Newsletter, April 14th, 2014

Daily Newsletter, April 15th, 2014

Daily Newsletter, April 16th, 2014
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Last Sunday was a bad day for me - 



totally fatigued and with hands that itched unbearably. That's not happened to me before.  Fortunately it only lasted for a day.  Is that peripheral neuropathy?  Part of fibromyalgia?  Saturday had been a super day when I cooked a family meal for seven people, and survived. Maybe Sunday was payback!


Anyway, looking forward to tomorrow.

A Happy Easter to you all
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.