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FMS eNews 15/11/14

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WORDz for the WEEK

195. Dreams are adventures you have yet to fulfill.


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

A lot of chronic fatigue syndrome research focuses on the immune system, but this new research highlights the importance of keeping an eye on the brain. See what abnormalities researchers have discovered and what they could mean for you. That's below.
Also this week, a drug that's already on the market may ease fibromyalgia symptoms. In the third and fourth spots up here as well as down in Featured Articles, we're focusing on mental health. Our illnesses may not be psychological, but they can have a major psychological impact on us.
On the right, you'll find some help for the holidays.
Take care of yourself!


Innate magic by Purple Law Lady

A while ago, I wrote about starting to see a Network Chiropractor and I’ve been a bit hesitant about writing about my experiences so far. I really don’t want to sound like I’m selling this modality to you – I’m just telling you how it has affected me. I cannot say whether it will work for you or not; and, whether you choose to try it or not, is up to you.
That being said…I am currently a huge fan!

Read more:


7 Ways Magnesium Helps with Chronic Pain

Our bodies are a little bit like automobiles (I’m a 65’ Ford Mustang, of course). We come in all shapes and sizes – and whether we like our make and model or not, there’s no denying we’re really something special.
Of course, as the years go by and we log more and more miles, problems arise. For some, the problems start early – long before they could even be considered a “classic car”. Such was my fate. For me, it is a constant battle to keep my body running. Most days, it takes all I’ve got just to get it out of “park”.I have a long list of things I do, foods I eat and nutritional supplements I take to keep myself out the junkyard. One of the most important supplements for me has been Magnesium. Some estimates show magnesium deficiency affects between 60-80% of Americans, with symptoms including pain, fatigue, muscle weakness and more.
So why do I take magnesium everyday? Besides wanting to avoid the symptoms listed above, here are 7 reasons Magnesium makes my list of important nutritional supplements:

  1.  Improves Sleep
  2.  Relieves Muscle Pain
  3.  Calms the Nerves
  4.  Boosts Brain Power
  5.  Proper Enzyme Functions
  6.  Healthy Bones
  7.  Keeps Me Balanced

Learn about them all:


The genetic process by which nerves can regrow

We are always following the latest scientific breakthroughs related to fibromyalgia and we decided this was worth sharing. 
A team of scientists at Penn State and Duke University have discovered a single gene responsible for allowing nerves to regrow themselves after being cut or damaged. 
Successful tests are currently being conducted on genetically modified fruit flies and this research will open the door to new and exciting treatment options for nerve related conditions such as fibromyalgia. 
Several studies have shown that nutritional supplementation can affect gene expression in humans. As the research continues down this avenue, we will be looking into ways that we can tap into this additional resource using nutrition to fight fibromyalgia. 
We will continue to follow this research and update you as progress is made. Until now, very little has been known about the genetic process by which nerves can regrow. This is very exciting.


A “Fatigue” Disorder No More? – What Multiple Sclerosis Taught Us About Fatigue and Chronic Fatigue Syndrome 
The “Fatigue” Disorders

Multiple sclerosis (MS) ranks amongst the most fatiguing disorders known. The most common symptom found in MS (75-95% of patients), fatigue is a major research topic with ten studies in the last five months featuring fatigue in their titles.
Like Chronic Fatigue Syndrome, though, the fatigue in MS is a mystery.  In fact in some ways it’s even more than a mystery.  The fatigue in MS is, oddly enough, not correlated with disease severity.  People with MS can be fatigued before lesions start popping up in their brains.  In fact, severe fatigue is often the first symptom to show up in MS.


Chapter Opens Up in Quest to Understand PEM in Chronic Fatigue Syndrome 

The Lights are ploughing new ground – not just in ME/CFS – but in how post-exertional malaise and fatigue occurs after exercise in humans (and, one must say mice.). In this third blog in a series of blogs exploring PEM and ME/CFS. we take advantage of a chapter in a book they wrote that explains how they’re going about explaining PEM in ME/CFS.

PEM Series

◾ A “Fatigue” Disorder No More? – What Multiple Sclerosis Taught Us About Fatigue and Chronic Fatigue Syndrome

◾ A Chronic Fatigue Syndrome Brain on Exercise – Not a Pretty Sight


Supplements for Fibromyalgia

Many fibromyalgia specialists recommend nutritional supplements for their patients. In his book Fibromyalgia: Up Close & Personal, Dr. Mark Pellegrino says, "Over the years I've used a lot of supplements in the treatment of fibromyalgia, and I believe they are effective in many patients. Not all patients benefit, but in general supplements are safe to try and, if they help, are relatively inexpensive to continue. Today nutritional supplements are one of the most important treatments I recommend for fibromyalgia."



Your Guide to Treating Fibromyalgia

 Step by Step - A Personal Approach to Managing Fibromyalgia This ebook is packed with detailed information about the most effective means of treating Fibromyalgia. Experts and Researchers agree that a "Patient Directed" Fibromyalgia management program is the best treatment approach. While dozens of proven effective treatment options are discussed at length, the focus of this book is on the process of putting systems to use in researching, planning, implementing and managing the development of an individualized Fibromyalgia treatment program. Through the key concept of "Intelligent" Trial and Error - this ebook will teach you a more effective means of managing your Fibromyalgia on a daily basis.

Read more:


[Medical News Today]

Fibromyalgia linked to decreased brain connectivity
A new study from Sweden finds fibromyalgia is linked to abnormal activity in parts of the brain that process pain signals and link them to other regions.

Decreased brain connectivity in fibromyalgia patients
For their study, the Karolinska researchers compared brain activity in women with and without fibromyalgia. In fibromyalgia patients, they found decreased connectivity between brain areas that process pain and sensorimotor signals.
[human brain] The results showed that the fibromyalgia participants had significantly increased pain sensitivity compared with the control group.
They suggest their findings show reduced brain connectivity may contribute to deficient pain regulation in people with fibromyalgia.

Read he report:


‘It’s like someone beating you up’: The invisible illness no one’s talking about

GEMMA FLOOD WAS in chronic pain for fifteen years before she found out why.
Over the years several doctors had tried and failed to establish what was causing the debilitating pain that had derailed her life.
After countless misdiagnoses, a doctor in Gorey finally discovered the truth: she had fibromyalgia syndrome. . . . .
, , , , Last month she launched a booklet aimed at spreading awareness of the disease. It features the real life stories of fibromyalgia sufferers. Some 3,000 copies are currently being distributed nationally

Early diagnosis
 Bucking the trend of a late diagnosis, Mairéad Deane (28) was just five-years-old when she found out that she had the illness.
Mairéad had scarlet fever when she was four, something she believes triggered her fibromyalgia.
Despite being so young, she remembers receiving her diagnosis vividly.
“I was in pain constantly … At 5 years of age I remember turning around to [the doctor] and asking ‘Am I going to die?’”  
Mairead is featured in Gemma's booklet.

SINEAD O'CONNOR spoke out about her own struggle with fibromyalgia. Mairéad said that this helped in terms of raising awareness of the syndrome.
“People would be more inclined to listen to a famous person than to us.”

Read their stories:
For a copy of Gemma's booklet email her at


Top Ten Things in a Chronic Illness Go Bag 

Do you remember the days when preparing to leave the house meant running through this mental checklist: “Keys, wallet, cell phone, GO” ?  Me neither.
Chronic illness means that leaving the house feels like a carefully orchestrated event where strategizing and preplanning are a necessity. It’s like going into battle. You have to make sure you have your weaponry (medications) plus everything else required for survival. And possibly a helmet, it’s rough out there.
To make it easier, create a Go Bag filled with all the essentials items you need to get out the door without constantly forgetting that one thing that you’re going to be miserable without.
Here are the top 10 tips from other chronic illness patients to help you pack for battle (or travel).

See them here:


Marijuana beats 3 leading fibromyalgia drugs 

Marijuana for fibromyalgia is not about using a high to cover up the pain.  There is a growing body of clinical and real-world evidence that marijuana helps pain on a deeper level, and the law can’t catch up fast enough. Below is little visual representation I put together of what the National Pain Foundation found in a survey of 1300 patients.  Although the sample size of people that tried Marijuana was smaller (n=390), the results still paint a picture of marijuana potentially being (much) more effective than the 3 leading drugs for fibromyalgia.  On a smaller scale, that’s the trend we’re seeing with treatment reviews on HealClick as well.


Sick Looks Like Me – The Revolution!

Is makeup festering in a drawer somewhere having not seen the light of day for years?
Has ‘making an effort’ become something other women do, women who aren’t living with chronic illness?
If so, then you’re going to get something valuable from this post, but if makeup, nice clothes, looking good and all that jazz aren’t your thing, and are never likely to be your thing, then you might just want to skip to the action in the last paragraphs.


A personal  note from Vicky

Many of us I know have been up to the Tower of London recently to view the poppies (in fact one class member has even been involved in planting them).  My husband is a talented amateur photographer and has an eye for the unusual. I think this picture works well with his use of black and white, the mud and the puddle on this poignant day. 
Education: Raking Leaves
Video of the week: The Criss Cross
Success Story: Barry Davis

Read all of Viky's newsletter:


Fibromyalgia Conference 2015

There are a few places left for FibCon 2015.  Book soon if you want to attend.
 Email or

Jeanne has also said that she would appreciate some assistance from those who are attending the Conference - like selling raffle tickets, collecting for the FollyPogs Research Charity and generally helping out wherever needed.  If you are willing to do this, please let Jeanne know  She's back in the saddle due to Teresa's incapacity.


Bristol FM.E United Support Group

If you live in or near Bristol you may like information about the Bristol FM.E United Support Group, that is, supporting those with Fibromyalgia & Myalgic Encephalomyelitis.  Please display the poster and hand out leaflets.



Fibromyalgia in Tonbridge, Support Group for West Kent

Our September 6th fundraising Awareness Day at ASDA Kingshill went very well. We made £178 and spoke to a lot of people about FMS. A number of fibromites introduced themselves and we were pleased to be able to offer them information about the condition and our support group. The committee would like to extend a huge thank you to Yvonne, Carol and Christine for coming along to help and support us. Thanks go to ASDA for giving us the opportunity and to their Community Life Champion Jayne Ashdown for all her help.

Read the rest of the Tonbridge newsletter:


Worthing & Surrounding Area’s Fibro/ME Support Group

Changes in the group for 2015: due to monthly meeting numbers dropping and other commitments we will be having 3 meetings a year. Same time and place … 17th March, 16th June, 20th October, Plus xmas meal to be arranged. There will be a charge at the door of £3.50 which works out at £10.50 for the year with free refreshments and newsletter.
Meals out: 17th February, 19th May, 15th September to local places will be in Newsletters, website and Facebook.
Once a month Coffee Meetings will stay the same: The last Wednesday of each month. 29th Jan, 25th Feb, 25th March, 29th April, 27th May, 24th June, 29th July, 26th August, 30th September, 28th October, 25th November.

Read all the Worthing news here:



It was heartwarming to see the response to the Children in Need appeal on TV last night, The money raised was phenomenal. .I don't know the statistics, but I wonder whether there are more, or less, needy children than there are people suffering from FM, ME/CFS?  If only a national appeal could be made for our forgotten cause!  I leave you with that thought.
I wish you well.




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 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 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 and you will be added to the emailing list.

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