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FMS eNews 02/05/15

Fibromyalgia Awareness Day Countdown

One more week to go before Fibromyalgia Awareness Day!  12th May - Remember?

Next week's issue will concentrate on Fibromyalgia  Awareness Day and the various events being planned for it.

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WORDz for the WEEK

They say that 'time' changes things, but actually you have to change them yourself.

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Is Dopamine Behind Fatigue?; Being Angry at Your Body

Is dysregulation of a single neurotransmitter the key to fatigue in ME/CFS and other neurological diseases? See why researchers say it could be, and how the immune system may play a big role, below.
Also this week, being angry at your body and keeping the anger from taking over your life; some ways to enjoy the spring and all that comes with it; and a look at being comfortable in spite of your pain.
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert

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Election special newsletter: should you swap votes with a stranger or support the enemy?

This is an election in which you may have to make tough decisions about what to do with your vote, even to the extent of swapping your vote with a stranger or voting for a party that has helped to slash your benefits.
The polls, pushed by an endless stream of tabloid hate, may just have begun to move in the Conservative’s favour. The possibility of £12 billion in benefits cuts, hitting disability living allowance, personal independence payment, housing benefit and carers allowance is still very real.
The Tories themselves are pouring huge amounts of millionaire donors’ money into identifying and bombarding a tiny number of undecided voters – perhaps 40,000 – in key marginals. If they succeed in frightening them into voting Conservative, the election may well be theirs.
And this is a tactic that won’t even show up in the polls.vote swap website home page
So, should claimants – who have the most to lose if the Tories get in - also be resorting to ‘under the radar’ tactics, such as vote swapping and tactical voting?
Vote swapping was credited with taking seats from the Tories in the 2001 general election, it could certainly do so again next week.
And tactical voting takes a strong stomach, but it can also achieve results.

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Pain or No Brain?

Ages and ages ago (except it doesn’t feel that long ago – doesn’t time fly when you’re in a fibro fog!), I (with my doctor’s advice) weaned myself off Lyrica to see if we could find a better way to deal with this condition. If you followed the posts, you’ll remember that I ended up at Step 1 again and back on it…almost immediately.
Basically, it seemed, I was given the choice of being in pain (no Lyrica) or no brain (with Lyrica). I chose no pain.

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A Guide to Understanding what Fibromyalgia is Doing to your Body.

For many people a diagnosis of fibromyalgia is a relief. There is typically a 2 to 3 year gap between the onset of symptoms and diagnosis. This time-frame is getting shorter as there are now more concise diagnostic tests. 

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Medications and Treatments for Fibromyalgia


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Is There a Link Between Fibromyalgia and Chest Pain?

There is a correlation between fibromyalgia and chest pain. In fact, a large percentage of the pain associated with fibromyalgia is focused around the chest. Two of the pain pressure points are around the breast bone and ribcage.

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Fibromyalgia and Headaches and Pains

As fibromyalgia sufferers, we have to deal with these headaches even more, because it’s just yet another common symptom of the disorder. Why are they so closely related? And what can we do in order to relieve this frustrating pain? Let’s take a closer look.
Plus other articles

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The EU and Public Health

Last week we sent all our customers a newsletter on how the EU is hugely damaging your right to take natural medicines of your choice, and how your access to information and opinion on how they might help you had been restricted, also by our membership of the EU. Today we discuss how EU directives interfere with conventional medicine, and the provision of the NHS. Most of this newsletter is copied word for word from a speech given by Professor Angus Dalglish, an oncology doctor working in the NHS. 

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Finding Its Feet: the Open Medicine Institute Strides Forward 

Vision was never the question with the Open Medicine Institute (OMI). They’ve always dreamed bigger than anyone else. They had vision in spades. The question was always follow through. Would they be able to make good on that big vision? The OMI has always had the vision. Now they’re starting to make good on it. Slowly but surely, they’re starting to, and they’re doing so in the most interesting fashion. Nestled in the heart of Silicon Valley the OMI and its fundraising arm, the Open Medicine Foundation are taking full advantage of their technologically rich environment. When they needed new technology to carry out a project they built it. They’re digging deeper into the genome than anyone else has. They have access to some of the best tools in the land. They’re soon to begin the biggest cognitive survey ever done using their unique online database.

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Eye-Opening Finding: Small Fiber Neuropathy Found in Fibromyalgia Patients Eyes 

The destruction of small nerve fibers in the skin of fibromyalgia patients (small fiber neuropathy – SFN) is one the most intriguing developments to show up in fibromyalgia in years. Not only does it indicate in striking fashion that fibromyalgia is a real, physical disease but it provides opportunities to rethink it and thus possibly open up new options for treatment.  
Studies suggest that 40-50% of fibromyalgia patients have SFN.
Now FM researcher and physician Dr. Martinez-Lavin takes the exploration of the SFN to a  new realm – the cornea of the eye. Why the cornea? It turns out that the cornea – that liquid, transparent film covering the front part of the eye –  is one of the  most sensitive tissues of the body. Innervated with sensory nerve fibers running from the trigeminal nerve, the cornea is loaded with pain receptors: the slightest touch or disturbance is immediately felt. In fact, the cornea has 300-600 times more  pain receptors  than the skin and 20-40 more pain receptors than the oh so sensitive dental pulp.  It has the densest array of small nerve fibers in the entire body.

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No Smoking Guns? Triggering Events Not Common in Fibromyalgia? 

How a disorder starts can be very informative. A rapid onset illness associated with swollen lymph glands, muscle aches, fatigue and fever so often marks the onset of a short-term infection that rarely do doctors attempt to identify the precipitating pathogen. Other beginnings are more obscure. The onset of complex regional pain syndrome (CRPS) usually starts with a wound,  but research suggests an infection occurring before the wound appears to be necessary to prime the system to respond bizarrely to the wound. What got the ball rolling in fibromyalgia? For many people – maybe nothing… Fibromyalgia seemed a lot simpler. Most cases were probably triggered by a physical trauma (eg car accident or surgery) or infection.  A recent study, however, suggested that the most common road to fibromyalgia involves neither a physical trauma nor an infection.

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Curse you, internal body clock.

It turns out that logging seven to nine hours of solid sleep isn't enough to guarantee a refreshed body and mind when morning arrives. The timing of your sleep matters a great deal, too, according to David Earnest, Ph.D., a professor at the Texas A&M Health Science Center College of Medicine. It's vital that both of these factors work together in harmony, because without that coordination, you'll find yourself suffering through yet another sleepless night.

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8 Reasons Why Spending Time Alone Is Actually Really Good For You

Americans have a complicated relationship with alone time. Though we often feel a constant connection because of social media, the fact is, we're more on our own than ever: More than 50 percent of American adults are single, and some 27 million people live alone. In 1950, just 22 percent of American adults were single, and 4 million lived alone. Combine that with people getting married later in life, and we're all just having more QT with ourselves.
Alone time, of course, is different than loneliness, which carries some health risks, including increased risk of heart disease and depression. But carving out some "me time," on the other hand, is a pretty awesome idea.

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Alpha-Stim M Special Offer "£100 off"- Message from Linda Horncastle

There is a special offer just for May, in the Fibromyalgia magazine offering £100 discount on an Alpha-Stim M. This is the device with ear-clips, probes and sticky AS-trodes. Now £499 (with VAT relief )usually £599. The Alpha-Stim AID, that is ear-clips only device, special offer is £299 (with VAT relief) usually £399.
The ear-clips can give relief of mild all over body pain, stress, insomnia and depression and the M can give extra pain relief via the probes and sticky AS-trodes.
You can get this by using the code FIBRO100 on the supplier’s website.  
Both devices are new and come with a 5 year warranty. 
More information about the 2 devices can be seen on my web page
If anyone would like FREE advice to which device is better for them I’m happy to help.
As you know I think it is an amazing piece of equipment it has made the difference from me being unable to work for 20 years because of FM to being a registered therapist again, something I thought I’d never be again.

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Dealing With Fibromyalgia Rash

Often when we think about fibromyalgia, we think of muscle pain, fatigue, sleep problems, digestive complaints and mood issues. However, many fibromyalgia sufferers also deal with rashes and other skin changes, which can be distressing and uncomfortable.

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Dr. Pridgen on Doses, Fixing Broken Bodies and Why the Next Fibromyalgia Trials Will Be Better

If Dr. Pridgen is right, his protocol for treating fibromyalgia could end up turning the medical world’s conception of FM (and perhaps even chronic fatigue syndrome) on its head. The first treatment trial had good results but they didn’t exactly turn the FM world upside down. Geoff Langhorne asked him about that in an interview a couple of months ago and I followed up  with my own questions.
A confident Dr. Pridgen explained why the first trials result were good but not earth-shattering and why the next trial results will be better. First some background. . . . . .

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Welcome to the May 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. 

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Nicola's Note

Hello everyone, As we approach the beginnings of summer, the above schedule has details of the last round of courses before the summer break. New beginners can join the Phoenix Tai Chi course on Monday evenings or the Chen style Tai Chi course on Tuesday evenings. We have a number of [Saturday workshops coming up.] http://earthbalance-taichi.com/2014/12/workshop- schedule-2015/You can browse over the May calendar here
The online schedule for May is here
Look forward to seeing you in class soon. Regards Nicola.

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A personal  note from Vicky

The photo shows my group training in ‘Trigger Point Pilates’ with our tutor.  Lydia has been a group exercise instructor who had serious knee problems leaving her for a time unable to walk.  She also worked as a sports therapist and decided to develop a programme to bring what she had found helpful to herself in her rehabilitation and helpful to her clients into a class situation.   We were the first group to go through her training programme. We learned a lot of techniques for releasing the myofascia and trigger points and lots of new ways to play with the ‘spiky balls’ some of which is proving popular! Todays education section is about the fascia.
Also:
Education: What is The Fascia?
Video of the week: Exercise to stretch the shoulders and chest
Success Story: Trish Moram

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This week I have been to Southampton again for another MRI scan to check whether there has been any metastasis of the cancer.  So it's fingers crossed that all is well.  I have to wait a couple of weeks for the results.
I have now reached the month for my becoming an octogenarian!  I have, as promised, relinquished the leaderhsip of the Horsham Fibromyalgia Support Group.  I hope it will go from strength to strength under new leadership.
However, I intend to continue FMS eNews for the foreseeable future.
Greetings to all my readers
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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