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FMS eNews 31/10/15


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WORDz for the WEEK

244.  A word can change someone's life but a hug can make their life worth living.

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Medical Tests/Proceedures & Our Symptoms

 Symptom triggers can come from anywhere, and the more we can predict what could set us off, the more we can try to prevent it. See what I learned when I went -- unprepared -- for an MRI, and learn from my mistakes.
 We'lll also look at some other common medical situations that could leave you in a flare if you're not careful. Then, looking ahead to some of the earlier holidays.
 Take care of yourself! 
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert

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DO YOU HAVE FIBROMYALGIA?

Local doctors need your help with a research study testing an investigational pain medication for fibromyalgia.
If you have fibromyalgia you know the constant burning and throbbing pain can have a serious impact on your daily life. Doctors are searching for new pain relief options, but they need your help.
Read on to see if you can help.

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Joey & Rachael here! We have some really significant and exciting news for you. When we launched HealClick in January 2014, we wanted to create a space for patients with chronic illness to connect and access the information and resources that they had always been lacking. For both of us, the process of finding effective treatments involved investing time, resources, and effort to finding similar patients and experimenting with the treatments that worked for them until we found what worked for either of us. But this process took too long and involved too much luck.
For 21 months, we’ve tried to create this special space, and in terms of creating a thriving  community, we were moderately successful. But we couldn’t say the same for our main goal: helping patients find effective treatments. For the last year, our metrics plateaued, and new reviews slowed to a trickle. Users expressed concerns that we weren’t providing enough medical value. Everything pointed at the same verdict: we could do so much better.
Read on . . .

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6 Out Of 10 To Lose Higher Rate Mobility Plus PIP Refused For Spending Too Much Time On Facebook

The Court of Appeal has crushed any lingering hopes of a successful challenge to the PIP 20 metre rule. As a result the DWP estimate that 6 out of 10 working age recipients of DLA higher rate mobility will have lost their award by 2018.
Meanwhile a first tier tribunal refused an award of PIP because the claimant spent too much time on Facebook.
And, in a move that may surprise many readers, Maximus are now offering free help with completing your ESA50. Would you accept it?
Elsewhere, we have evidence of the not so subtle stereotyping of claimants in a Capita training manual for assessors and news of a new Benefits and Work resource
coming soon.
Oh, and there’s a Maximus video of an ESA medical assessment you might want to watch too.

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Blog title inspired by The Spoon Theory,  by Christine Miserandino, an excellent explanation of what it's like to live with invisible illness. Read More 

Selected article - Magnesium for Fibromyalgia


One of the earliest recommendations that I received for Fibromyalgia was magnesium. A friend suggested epsom salt baths and my chiropractor suggested taking magnesium supplements. Since then I’ve read many studies that confirm that most of us with Fibromyalgia are low in magnesium and can benefit from some sort of supplementation. There are a ton of different magnesium supplements available in different formulations. Some are easier on the stomach than others, some are easier to absorb. I personally prefer magnesium malate as it seems to have far less of GI issues than some others.
Read on . . .
See also FB
 
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This week’s fibromyalgia and ME/CFS news (week of Oct. 26, 2015)

Thought I’d share a fibro fog moment this week: I accidentally used the wrong debit card (because they are both silver in color) to pay a large bill yesterday and ended up overdrawing my bank account. Didn’t discover what I’d done until this morning, so that required an unplanned trip to the ATM and the bank to fix the account balances. Can’t believe I did that! Doh!
Top news
  • Oklahoma woman with fibromyalgia admits to stealing hydrocodone because she couldn’t afford her medication.
  • This is incredibly disturbing: ME Global Chronicle covers the story of Karina Hansen, a Danish ME/CFS patient who is being kept against her will in a clinic for people
  • with brain damage. (The link will take you to a page of ME Global’s issues. You’ll need to download the Oct. 25, 2015/Karina Hansen issue.)
  • First legal cannabis vaporizer hits the U.K., and a woman with fibromyalgia reviews it.
  • U.S./U.K. study finds there are differences in disability and symptoms among U.S. and U.K. ME/CFS patients.
  • I bet most of us know all about these “9 Things Only Someone with Chronic Pain Understands.”
PLUS - Research news, Interviews, Personal stories and Odds & Ends

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10.23.2015 - The Cymbalta withdrawal lawsuits: An interview with the attorneys

This is Part 2 of an ongoing series on the Cymbalta withdrawal lawsuits. It includes an interview with Baum, Hedlund, Aristei & Goldman, PC, one of the law firms representing hundreds of patients who have been affected by Cymbalta’s withdrawal symptoms. Part 1 of this series addressed Cymbalta’s withdrawal symptoms, why the lawsuits were brought and helpful information for anyone planning to stop Cymbalta. Next month, I’ll be writing a follow-up post summarizing the cases that have been heard so far and their outcomes. As always, I’ll post any news related to the lawsuits in my weekly news updates. To make things easy, I’ve created a page dedicated to the lawsuits where you’ll find all of FedUpwithFatigue’s Cymbalta posts, links to national media stories and other useful information. I’ll be covering these lawsuits as they unfold. Please consider subscribing (there are forms at the top of the page and the bottom of this post) to receive the latest updates.
After I posted Part 1 of this series, I was shocked by the number of comments and emails that I received from people who had experienced Cymbalta’s withdrawal symptoms. Based on the feedback, it’s obvious this issue has affected thousands within the fibromyalgia community (and others since Cymbalta is used for various conditions).
Read on . . .

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International Distinguished Services Award for Pam Stewart

Fibromyalgia Action UK (FMA UK) has a pleasure to announce that Pam Stewart,  Trustee and a former long-standing Chair of the charity has received an international Distinguished Services Award from the Bone and Joint Decade, a Global Alliance for Musculoskeletal Health.This is an international Alliance of organisations working in the musculoskeletal conditions field.
Pam received the Award ‘’for promotion of the goals of the Bone and Joint Decade and in recognition of distinguished professional excellence and service to colleagues and people affected by musculoskeletal disorders.’’ Everyone at FMA UK would like to congratulate Pam as she wholeheartedly deserves the award for her outstanding contribution, commitment and achievements in raising awareness about fibromyalgia nationally and internationally and for her advocacy work in this field.

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30 Years in the Making: Fibromyalgia Finally Recognized as Official Diagnosis
 [Not new news for us but the implications are worth noting]

For the first time ever, fibromyalgia is being listed as an official diagnosis in the medical coding list that doctors, physicians, nurses, researchers, insurers and others use to classify diseases and other health problems. The list – known as the International Statistical Classification of Disease and Related Health Problems or ICD – is released by the World Health Organization (WHO). The ICD lists codes for diseases, signs and symptoms, abnormal findings, complaints, social circumstances and external causes of injury or diseases.
Implications
  • More Credibility
  • May Help with Disability Claims
  • May Help with Insurance Coverage
  • Will Advance Fibromyalgia Research
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Serotonin: Is it an Important Factor in Fibromyalgia?


Serotonin, also known as 5-hydroxytryptamine (5-HT) is an important chemical neurotransmitter found in the human body. Serotonin is manufactured in the brain and the intestines. The majority of the body’s serotonin (90%) is found in the gastrointestinal tract where it regulates intestinal movements that stimulate gut motility. The remainder is found in the central nervous system and blood platelets where it plays a role in the formation of blood clots through vasoconstriction. It is synthesized along with its metabolite 5-hydroxtryptophan (5-HTP) from the amino acid L-tryptophan.
Serotonin is popularly thought to contribute to feelings of well-being and happiness. There is no scientific evidence, however, that low levels of serotonin contribute to depression. Antidepressant medications such as selective reuptake inhibitors (SSRIs) are thought to inhibit the re-absorption or serotonin and norepinephrine neurotransmitters. This increases the levels of serotonin in the synapse of the nerves in the brain resulting in an elevation of mood. Recreational drugs such as MDMA and cocaine are also thought to inhibit the re-absorption of serotonin to create their highs. Scientists, however, are still not sure precisely how these drugs work.

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Are All the “Feel-Good” Pathways Blocked in Fibromyalgia and Chronic Fatigue Syndrome?


A recent study illuminated a new factor in the production of a runner's high (or probably any good feelings for that matter). Removing that factor caused the mice in the study to run to their hearts delight.
That factor, interestingly, is under investigation in ME/CFS. The study prompted the question if any of the feel-good pathways are working in ME/CFS and FM? Find out the outcome.

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Fibromyalgia - Neuroinflammatory Disease? Savella - Anti- Inflammatory Drug?


First Natelson and company found high lactate levels in the brains of FM patients. That suggested FM was a neuroinflammatory disorder (putting in the same boat as multiple sclerosis). Then they showed that Savella - an antidepressant - reduced those lactate levels. That suggested that Savella, at least in FM, is probably better known as an anti-inflammatory - and pointed in a new treatment direction.
It was a study that shifted contexts all over the place. Check out what happened.

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10 Cancer-Causing Foods You Should Avoid
[Not strictly 'on-topic' but relevant to general health.]

The food we eat has the ability to affect our health in very big ways – for better or for worse. Eat too much fat and you increase your risk of heart disease. Drink too much alcohol and you damage your liver. In today’s day and age of processed and “fast” food, much of what we eat is actually a detriment to our health. But can food actually cause cancer? How much damage does our diet actually do to our cells? Here are 10 foods that have been found by studies to increase cancer risks:
  1 – Red Meat
  2 – Alcohol
  3 – Artificial Sweeteners
  4 – Genetically Modified Food
  5 – Refined Sugar
  6 – Manufactured Soft Drinks
  7 – Smoked And Grilled Meat
  8 – Hydrogenated Oils
  9 – Non-Organic Produce (Pesticide Sprayed)
10 – Farmed Salmon
Read the details on the herbs.info website.

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What’s Good? A List Of Anticancer Foods:

Some Good News after all that “bad news” – there are numerous foods which have been associated with LOWER cancer risks in scientific research. Check out our mega list of the good stuff here – Top 34 Anti-Cancer Foods.

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Don't get too excited about Hallowe'en or Guy Fawkes!  Be wary of fires and fireworks, tricks or even treats!  But have fun.

Fibro hugs
Stella

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or leave your comments below under Post a Comment

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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 navigationproblems, 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.

FMS eNews 24/10/15



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WORDz for the WEEK

243. Think happy thoughts . . . think happy thoughts . .. think happy thoughts


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Are FMS & ME/CFS in Your Genes?

First, I want to apologize for last week's newsletter. What you got was an automated version, which I usually edit extensively. I had a rough week and lost track of my days, and by the time I realized it was Friday, it had already gone out. I'll make sure it doesn't happen again!
 This week, we look at the genetic component of our illnesses, and I've also included a lot of expanded definitions of terms we should all know.Take care of yourself! 
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert


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1 Sugar that Fights Disease, Chronic Conditions and Weight Gain


It's happening in small, private clinics...
And it's happening in the largest, most respected hospitals in the world...
A rising tide of doctors and health care providers are now urging their patients eat this "life-giving" sugar every single day.
They're not just recommending it to give a "slightly better alternative" to other sweeteners either. They're prescribing it to treat life-threatening diseases, heal chronic conditions, and keep people looking and feeling their very best.
What is this sugar?
If you guessed honey, then you're absolutely right. For we've all heard about how honey is a remarkable substance. We've heard about how it "doesn't go bad". Or about how archaeologists found unspoiled, 2000-year-old honey in an Egyptian tomb.
Read on . . . you don't have to buy the books - unless you want to.

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10 common symptoms of Fibromyalgia & natural remedies to help


Pain all over, exhaustion, bloating and constantly forgetting things are but a few of the many symptoms often associated with fibromyalgia. You may experience all of these symptoms, some of these symptoms or other symptoms. For some, the symptoms are present every day, for others, only on some days. This is not to mention the varying intensity of symptoms from day to day… confused yet? Now you know why it is so frustrating for you and your doctor when trying to diagnose this syndrome.
The effect of fibromyalgia on the system varies from person to person; however, there are some common symptoms which frequently occur together. Recognising these symptoms and understanding how to treat them naturally can help you to manage your fibromyalgia better.
Who does fibromyalgia affect?
How to diagnose fibromyalgia
Common symptoms and natural remedies

 1. Widespread pain
 2. Fatigue
 3. Sleep problems
 4. Fibro Fog
 5. Digestive problems
 6. Headaches
 7. Sensory sensitivities
 8. Stiffness
 9. Stress & Anxiety
10. Mood swings


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Webinar with Amanda Collins - Elephants, Tigers and Police Sirens.


Elaine Wilkins
Elaine Wilkins ingterviews Amanda about her fibromyalgia, workloads, family problems and how she overcame them

See also latest Newsletter and Website


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This week’s fibromyalgia and ME/CFS news (week of Oct. 19, 2015)

Hi everyone! Here’s this week’s fibromyalgia and ME/CFS news roundup. Some highlights:
  1.     Indiana’s Cymbalta withdrawal lawsuits won’t be consolidated
  2.     Styx lead singer sues band members for touring without him after ME/CFS diagnosis
  3.     Australia legalizes medical cannabis.
  4.     How doctors take women’s pain less seriously
  5.     What not to say to someone living with chronic pain
  6.     ME/CFS linked to H1N1 infection
  7.     Tips for less painful mammograms
  8.     Plus research news, personal stories and much more
 Please consider sharing this link if you find the content valuable.

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Hello !

If you are a new subscriber, I just wanted to highlight some of FedUpwithFatigue.com's most popular posts, so you can get a sense for all of the great content that will be coming to you in the future. Here goes:
Quitting Cymbalta? What You Need to Know Before You Take that Last Pill
- More than 200 U.S. Cymbalta patients are suing drugmaker Eli Lilly & Co., claiming the company has not been forthcoming about the antidepressant's withdrawal symptoms. If you are or were a Cymbalta user, then you don't want to miss this post!

What You Need to Know About CBD Oil & Fibromyalgia
- What is CBD oil? Does it work? Is it legal? Find out everything you need to know in this post!

The Fibro Drug Your Doctor Probably Doesn't Know About
- If nothing has worked to help relieve your fibromyalgia pain, then you might want to take a look at this post!

Need Energy? Why D-Ribose May Become Your Next Favorite Supplement
- If you're struggling with fatigue, then adding d-ribose to your supplement regime might help!

Why Your Fibro Meds Aren't Working
- Ever wonder why Cymbalta and Lyrica work for some people and not others? Find out the answer here!

Playing the Chronic Illness Blame Game
- Before you blame that new symptom on "just fibro," you better read this!

This is just a sampling to get you started!
Is there a topic that you'd like me to do a post on? Email me donna@fedupwithfatigue.com and tell me!
Gentle hugs,
Donna Gregory
Founder, FedUpwithFatigue.com

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Fibromyalgia And Ineffective Sensory Processing. What Are The Facts?


Fibromyalgia sufferers are well aware that pain and discomfort can easily be triggered by certain sensory experiences like light, sound, and touch.
Sometimes, even the softest noise can sound like pots and pans banging around the kitchen sink. But is this sensory overload a symptom of fibromyalgia? Or is ineffective sensory processing linked to the cause of fibromyalgia? Let’s look at the facts.
Although scientists and doctors have been researching the cause of fibromyalgia for decades, there has been no conclusive evidence that proves the cause of the condition. It’s very frustrating, which is why the researchers continue to look for answers. . . .


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7 Things I Wish I’d Known When I Was Diagnosed With Fibromyalgia


We’ve all heard the old adage that “experience is the mother of wisdom.” For me, this has certainly proven to be true. With regards to fibromyalgia, there is a lot that time and experiences have taught me. Some of these things I wish I’d known when I was first diagnosed, but for a variety of reasons (i.e. my own stubbornness, lack of reliable info at the time, etc.) the learning process took me years.
Truth be told, there is still much to be learned and a lot I wish I understood about fibromyalgia but still don’t. However, as I reflect back on many of the lessons I’ve been taught I know a lot more now than I did when my journey first began. Here are a few of the biggest lessons I’ve learned that I wish I’d known (or believed) when I was first diagnosed with fibromyalgia:
  1.  It’s Okay to Say “No”
  2.  Listen to What Your Body is Telling You
  3.  Diet & Nutrition Can Make a Difference (but everyone is different)
  4.  Find Ways to Reduce “Decision Fatigue”
  5.  Find Positive Ways to Handle Stress
  6.  Alternative Exercises Like Yoga Can Be Helpful
  7.  Think Holistically About Your Treatment
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"Complete Relaxation"

Glenn Harrold is one of the world's most successful hypnotherapists. He has helped thousands including many celebrities in a 20-year-career and has sold over 6 million hypnosis CDs, MP3 downloads and Apps.
His hypnotherapy titles are well established as the UK's best-selling self-help CDs and downloads of all time, they still consistently top the self-help audio charts on Amazon, iTunes, Audible and the App Store.
You can buy his books and CDs or download a free iphone app.


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What Is Tired and Wired?

This video explores the concept of being ‘tired and wired’ and its relationship to CFS/ME.
Alex explains what the difference is between “normal tiredness” vs the “wired” feeling experienced as part of ME/CFS. This is often referred to as being ‘tired and wired,’ and in this short video Alex explores the impact of being wired.
Click on the video below to learn more.



 

We hope you enjoy and please do forward on to anyone you think might find it useful...

 
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United Nation’s investigation in the UK concerning the human rights of disabled people- submission deadline

I reported last year that the UK is to be investigated formally by the United Nations because of allegations of “systematic and grave” violations of disabled people’s human rights.
In August I wrote that officials from the United Nation’s Committee on the Rights of Persons with Disabilities (UNCRPD) are to visit Britain. The inquiry is confidential, and those giving evidence have been asked to sign a confidentiality agreement.
A United Nations team have arrived in the UK and it’s understood they will visit Manchester, London, Bristol, as well as parts of Scotland, Wales and Northern Ireland.
The United Nations team are also expecting to meet with the Equality and Human Rights Commission, members of parliament, individual campaigners and disabled people’s organisations, representatives from local authorities and academics.
The team will be gathering direct evidence from individuals about the impact of government austerity measures, with a focus on benefit cuts and sanctions; cuts to social care; cuts to legal aid; the closure of the Independent Living Fund (ILF); the adverse impact of the Work Capability Assessment WCA); the shortage of accessible and affordable housing; the impact of the bedroom tax on disabled people, and also, the rise in disability hate crime.


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Sleep Easy Workshop by Caroline Hinkes

Saturday the 31st of October, or Saturday the 28th of November
Arrival time is 9.30am, The Workshop will run from 10am-1pm
South East Cancer Help Centre ( www.sechc.org.uk ) , 2 Purley Road (near Tescos), Purley CR8 2HA
Details in a Word document
Caroline is offering this workshop to FM patients for £10 instead of £25.  So, a bargain if you are within reach of Purley.
Contact Caroline for more information or to make a Workshop Booking
Please email caroline.hinkes@btinternet.com with ‘sleep workshop booking’ in the subject box, or visit her website
 

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I had a day out on Thursday when I went to Southampton! Not a pleasure trip, but to South Hants Hospital for an MRI liver scan and to Southampton General Hospital to see the oncology specialist.
Fortunately the results were encouraging - no metastasis.  Glad that's over with for now. Next visit will be in April. 
Don't forget to put your clocks back tonight!
Sleep well
Stella

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or leave your comments below under Post a Comment 
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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.

FMS eNews 17/10/15



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WORDz for the WEEK

242.  In the book of life, the answers are not in the back.


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Can Yoga Help with Chronic Fatigue Syndrome?

Adrienne Dellwo - Fibromyalgia &Chronic Fatigue Expert

Can Yoga Help with Chronic Fatigue Syndrome? 
See what research says about the effect yoga may have on chronic fatigue syndrome. Get an example of a regimen that worked with making symptoms worse. 
READ NOW


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Fibromyalgia Tied to Hysterectomy, Gynecologic Disease 
Hysterectomy and other gynocologic surgery may be linked to the onset of fibromyalgia. See what we know about the connection. 
READ NOW


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Titer Test 
Get a definition of titer test and see how it's sometimes used in chronic fatigue syndrome. 
READ NOW


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Could Vitamin E & Protein Ease Fibromyalgia Symptoms? 
See what research says about protein and vitamin E consumption and the impact they can have on fibromyalgia symptoms and quality of life. 
READ NOW


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Try ActiPatch® Advanced Long-Lasting Pain Relief Today!


Relieves chronic back pain, knee pain, shoulder & neck pain, pain due to arthritis, fibromyalgia, sprains & strains
The ActiPatch® 7-Day Trial is only £2.95! with FREE P&P!
The full version 30-day products are £19.99 for 720 hours of use with on/off capability.  Click here for more details
*This offer is only valid to UK residents. Only two trials permitted per household & only one trial per user. 7-Day Trials will be delivered within 2 weeks of request.
 
See how ActiPatch is changing lives!



See also this presentation


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The Tragic Neglect of Chronic Fatigue Syndrome

It leaves people bed-bound and drives some to suicide, but there's little research money devoted to the disease. Now, change is coming, thanks to the patients themselves.
This past July, Brian Vastag, a former science reporter, placed an op-ed with his former employer, the Washington Post. It was an open letter to the National Institutes of Health director Francis Collins, a man Vastag had formerly used as a source on his beat.
“I’ve been felled by the most forlorn of orphan illnesses,” Vastag wrote. “At 43, my productive life may well be over.”
There was no cure for his disease, known by some as chronic fatigue syndrome, Vastag wrote, and little NIH funding available to search for one. Would Collins step up and change that?
Read more . . .


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Amitriptyline Side Effects

Not all side effects for amitriptyline may be reported. You should always consult a doctor or healthcare professional for medical advice. Side effects can be reported to the FDA here. http://www.fda.gov/Safety/MedWatch/default.htm
For the Consumer
Applies to amitriptyline: oral tablet
In addition to its needed effects, some unwanted effects may be caused by amitriptyline. In the event that any of these side effects do occur, they may require medical attention.
You should check with your doctor immediately if any of these side effects occur when taking amitriptyline
(Around 150 symptoms of possible side effects are listed!  Explore the site for other drugs too.)


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This week’s fibromyalgia and ME/CFS news (week of Oct. 12, 2015)

Top stories …
Market researcher predicts more than 1 million new diagnoses of fibromyalgia by 2023.
Judicial Panel refuses to consolidate Cymbalta withdrawal lawsuits – again.
ME/CFS gets more mainstream media coverage! This week The Atlantic magazine featured “The Tragic Neglect of Chronic Fatigue Syndrome.” Here’s a teaser: “It leaves people bed-bound and drives some to suicide, but there’s little research money devoted to the disease. Now, change is coming, thanks to the patients themselves.”
Louisiana (U.S.) woman with fibromyalgia sues Life Insurance Company of North America after they canceled her disability coverage and told her to get a job.
Struggling to get dinner on the table? Then, these “9 Tips for Cooking with Chronic Pain” might be useful.
Well, this doesn’t happen often: Physicians and patients generally agree on the criteria to diagnose fibromyalgia, finds prospective study.
And loads more . . . .


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I think I’m getting better (and here’s how I’m doing it)

. . . When I got sick several years ago, I never accepted that I’d spend the rest of my life exhausted and in pain. I kept looking for answers. I’ve tried so many things over the years to manage my symptoms. Some stuff has helped (like low-dose naltrexone and CBD oil), and a lot of it hasn’t, like the drugs prescribed by my well-meaning rheumatologist.
But I think I may have finally found what works for me. If you’ve been following me for a few months, then you might have read that I’m a new-ish patient of Dr. Rodger Murphree. Dr. Murphree practices functional medicine out of Birmingham, Alabama (U.S.). For the past 18 years, he’s specialized in treating fibromyalgia and works with patients all over the world via phone consults.
Dr. Murphree doesn’t promise a cure for fibromyalgia, but he does have a good record of helping fibro patients feel better. His basic philosophy is that most pharmaceuticals don’t treat the underlying cause of disease; they just mask symptoms and often with bad side effects. He focuses on using vitamins, minerals and amino acids to restore the body to health. (My words, not his.)
Read on . . .


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You Only Live Twice - by Purple Law Lady  


Agent 007 and the secret Japanese company Daiichi Sankyo must find and stop the true culprit of a series of attacks on visual and auditory regions of the brain in fibromyalgia patients.

Guess what I did today!
After only 5 hours sleep (I was up ‘til 3am with friends drinking vodka), I went to an appointment, stopped at the nursery to pick up some plants and soil, did some gardening, played with Kimba, finished the laundry and made some important phone-calls. Pretty cool, huh?
The appointment I went to was for another drug trial check-up. I bounced in, a little hung-over but full of beans. I’m feeling like the old me – could this be a second chance at my life?
The doctor and nurse practitioner looked on kinda stunned. (Remember, none of us know exactly what drug I’m taking.) I’m kinda stunned…on Sunday, I realised that I was happy – really happy – and I don’t know when I last felt happiness. I guess antidepressants just keep you on an even keel and you don’t realise that you’re not happy; you just know that you no longer feel so bad. I find myself singing to the radio where, before, I couldn’t handle the radio even being on.
Read on . . .


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Is There A Link Between Food Additives And Fibromyalgia?


Recent studies have shown that food additives may increase symptoms of fibromyalgia. Although there is no proof of a complete cure for fibromyalgia, the foods you eat might just help your symptoms. But what are food additives and how do they affect fibromyalgia sufferers?
You might know food additives by the names of MSG or aspartame. Those are just common examples seen in everyday foods like diet sodas. These food additives are in the category of “excitotoxins,” which is also a naturally occurring substance in the brain. The normal function of these excitotoxins is to get your brain firing quickly, which helps you learn and retain information. In fact, you’re using them right now! But what happens when we add artificial excitotoxins to our body?


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Best and Worst Foods for Sleep

What to eat before bed - by Amanda Gardner
1. of 18.  From early birds to night owls, we all can agree that when we finally lay our heads on the pillow we’d like to actually go to sleep, thank you.
Nothing is more annoying than insomnia, and the evidence is piling up that sleep is essential for good health. Although the research is a bit spotty when it comes to which foods help or harm sleep, anecdotal evidence does suggest that certain items consumed right before bedtime are more likely to be “sleep promoters” while others may be “sleep stealers,” says Russell Rosenberg, Ph.D., CEO of the National Sleep Foundation.
 See 2 - 18.


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ME/CFS/FM Webinars, Survey, Summits and Health Rising’s New Look


Sometimes things all seem to happen at once. This is one of those times. There’s lots going on this month.
Webinars, TV Shows, Conference Calls and Summits
Alan Light On “New Developments in ME/CFS”
Alan Light graphs showing almost off the chart changes in gene expression in ME/CFS patients is perhaps the most vivid visual portrayal of post-exertional malaise yet produced. One of the few ME/CFS/FM researchers to consistently get NIH grants, Alan Light has produced 9 papers, mostly on the effects of exercise on the gene activity in ME/CFS, FM, depression, prostate cancer, depression and multiple sclerosis.  He’s on the cutting edge of understanding how PEM occurs.


Carol Head doing an impromptu interview with Dr. Light



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When Panic Isn't: Dr. Bell on Maggie's ME/CFS and Fibromyalgia Story


"CFS, and the patients who suffer from it, have a great deal to teach those of us who have made medicine our life. Once researchers unravel the physiologic mechanisms of this illness, the discoveries will help unravel basic mechanisms of unnumbered other diseases." Dr. David Bell MD​
(Dr. Bell's case history of a patient, Maggie, with chronic fatigue syndrome and fibromyalgia plus panic attacks is excerpted from Dr. Bell’s book Faces of CFS - Case Histories of Chronic Fatigue Syndrome,* published in August, 2000.
It shows how an expert diagnostician can tell the difference between a panic disorder and ME/CFS and fibromyalgia. In Maggie's case her prior doctors had zeroed in on symptoms similar to those found in panic attack (heart racing, face flushing, lips quivering) while ignored symptoms that were associated with ME/CFS (exhaustion, cognitive problems, leaden feelings in limbs, sore throat, IBS symptoms). Their diagnosis incorrect Maggie received treatments that did nothing for her - until she Dr. Bell who correctly diagnosed with orthostatic intolerance and ME/CFS/FM and gave her appropriate treatments - Cort)
Read Maggie's story.


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8 Nutritional Powerhouses You Can Add To Your Water To Support Digestion, Hydration and Cleansing


How many of us actually follow the “eight glasses of water a day” rule? Plain water can be a bore to drink, especially if a person’s day doesn’t include strenuous activities. But there are ways to help make water more inviting to drink! Adding herbs, fruits, and vegetables to your water not only adds flavor but might make your water healthier. We’ve picked out 8 scientifically-backed nutritional powerhouses to support digestion, cleansing, hydration and all round good health. [1]
1. Fruit (Citrus Or Berries)
Those restauranteurs were on to something by adding lemon to the water. Beyond adding a pleasant taste to other wise plain water, using lemon zest, peel, or juice to water also adds much needed Vitamin C to the drink. You can use the citrus of your choice, strawberries, blackberries, raspberries and more.
See 2. - 8. as well!


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Top 20 Natural Painkillers In Your Kitchen


Just discovered a fantastic, fascinating list of natural painkillers that are common kitchen ingredients! What’s interesting is that the list is not just a basic list – but also gives specific information as to the type of pain that researchers have found that these natural ingredients may assist with – and the way in which the food is used (not all of the remedies involve actually eating the herb / food in question!)
This list is absolutely incredible – and the uses are based on reports from scientific research (this info is included at the source article – link at the foot of my commentary). The original list is a bit of a long read though, requiring much scrolling – and so we thought it might be good to seem them all “at a glance” – so for those who want to “skim” through the list really quickly, I made a “short version” of the top 20, together with a summary of the condition each item is used for.


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Amazing Health Benefits Of Nuts


Nuts Are Energy-Dense Foods
Nuts are rich in protein, dietary fiber, vitamins, minerals, anti-oxidants, and phytoesterols – all of which have great health benefits for the prevention of cardiac disease and diabetes type 2. A study in 2014 by Jackson and Hu actually suggest eating handful of nuts each day to replace less healthy snacks, like junkfood and sodas, because they are much healthier.
Nuts have come under criticism by some because of high fat content, but research has shown that the fats they contain can be considered as “good fats” – which do not cause weight gain because their high calorie intake is easily absorbed and metabolized by the body into energy.


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600 Reasons Turmeric May Be The World’s Most Important Herb


We found a simply astonishing page all about Turmeric and had to share! I honestly think it is one of the best pages about a herb I have ever seen (and I’ve seen a fair number!) The link is after our commentary.
There are several things that are amazing about the page we discovered. First – of course – the fact that there is scientific research to support the notion that turmeric may be beneficial for a staggering 600+ conditions. It is one of the world’s most studied items for medicinal potential, with over 4000 scientific studies being recorded overall.
Read more . . .


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I Am The Woman: One Woman's Struggle With Fibromyalgia


I wish I could start this with Once Upon a Time and create a happy ending, but unfortunately this is nowhere near a fairy tale and my story has not come to an end.
I am a mother, wife, artist, foodie, writer, animal lover, health advocate, candle maker, crafter, DIY expert and becoming a pretty good Frugal shopper. I also have Fibromyalgia which has progressively gotten worse and has left me unable to work for the last two months!
This has taken a toll on my emotions and my womanhood.
It has made me shed many tears and made me question a lot of things...


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Fibro Sensitivity and Pain


Fibro Sensitivity to Touch
Fibromyalgia is well known for causing widespread pain. This comes in the form of joint pain, muscle pain, and even nerve pain. What some may not realize though, is that these different types of pain have different triggers. Nerve pain specifically is very different from the other types of pain. It is nerve pain that causes sensitivity to touch, which is known as tactile allodynia.
Tactile allodynia is not quite as common as joint and muscle pain, but it can be very difficult to live with for those who do experience it. As with most of the symptoms of Fibromyalgia this sensitivity to touch can vary in severity from person to person. I personally suffer with this, but not as badly as others that I have talked to.
For some, myself included, things like being poked, or bumping into a table causes pain, much more pain than it should. However, for others it is so bad that being lightly touched by another person and even the pressure of their own clothing causes extreme pain.


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Valeant Pharmaceuticals CEO: We’re in Business of Shareholder Profit, not Helping the Sick


Martin Shkreli might be the present poster boy for Big Pharma’s psychopathic greed; however, he is only the most public face of a problem that is drawing increasing scrutiny from lawmakers whose constituents are sick and tired of an industry that is literally murdering people in the name of profits. Recently, the Progressive media turned its spotlight on yet another blood-sucking corporate vampire: J. Michael Pearson, the smirking, self-satisfied CEO of Valeant Pharmaceuticals.
Pierson’s company is not in the business of curing disease and easing suffering. It exists to make big money for its shareholders, something that Pearson readily acknowledges: “[If] products are sort of mispriced and there’s an opportunity, we will act appropriately in terms of doing what I assume our shareholders would like us to do.” In “acting appropriately,” Valeant has raised the prices on several drugs this year – in some cases, as much as 800%.


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It is two years now since I lost my left eye to ocular melanoma (eye cancer).  I have recently attended the ophthalmology clinics at Horsham Hospital and Moorfields in London.  The sight in my right eye is still good so it's business as usual, but there is a cataract forming which might mean trouble in the future.  Hopefully it will develop slowly.  I don't want to have to face total blindness.  Not sure how I would cope with that!  Losing one eye was bad enough, but . . . . . I won't cross bridges before I have to!!!  I love this picture, very symbolic, so had to use it here.
Forever optimistic

Fibro Hugs
Stella

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or leave your comments below under Post a Comment

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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.