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FMS eNews 21/05/2016

I have been very grateful for the patient transport provided for my and my husband's many hospital appointments.  However, the system changed on 1st April when the firm Coperforma took over.  Since then we have both had bad experiences - delayed transport causing us to be late for appointments and having to wait for ages to be picked up afterwards.  This week my husband had to wait five and a half hours to be brought home after a twenty minutes consultation.  The stress and discomfort caused by such treatment is indescribable.  Even their own website says that the service is unacceptable!  It is very difficult to take oneself to such appointments as it is rare to be able to park near the entrance, and walking through a huge carpark is not an option.  And I am not comfortable with driving anywhere other than locally, for various health (or lack of) reasons.  I hope they get themselves organised into having a resemblance of efficiency before too long.  It's a great system - if it works.  Rant over!  Now down to fibro business . . .

WORDz for the WEEK

273.  The sword of truth is heavier to swing than the reaphook of deception.  But it's worth it !!


Research and new developments for fibromyalgia

Arthritis Research UK, alongside the University of Nottingham and local NHS trusts, is supporting the world’s first national centre for research into understanding the mechanisms of pain in musculoskeletal disorders. The Arthritis Research UK Pain Centre aims to:

  • investigate how people experience pain
  • understand the biological basis of pain 
  • develop new drugs to treat pain more effectively 
  • improve the effectiveness of currently available pain-relief drugs
  • investigate basic pathways of pain perception to identify new targets for developing treatments.

See more at . . .


Dear Friends,

Welcome to the first interactive destination community for people living with and treating chronic pain! You are not alone. Our community understands what it’s like to live with pain, and we are here to support, empower and motivate you by providing access to health care providers, advocates, products, services and so much more, all to help you feel better.
Join FREE and start using the CPC as your go-to place for improved health and community support.
Gentle Hugs ~ Lynne Matallana
See the video

All About Pain
The Future is no longer bleak and without promise for people in pain! The Community Pain Center (CPC)™   is your new destination for wellness, providing information, resources, services, support and motivation.  JOIN the Community today for FREE and change the way you live life, and find more personalized solutions for the treatment of your pain.  The CPC is “… What you have been hoping for!”

Animal-Assisted Therapy for People with Chronic Pain

Background Information
Humans have been in close partnership with animals throughout most of recorded history. We have depended on their working with us for our survival as they have tended livestock, guarded our homes, and hunted for game, among other types of work. Evidence of animals as companions has also been traced to the very beginnings of human history. The symbiotic relationship continues today and is gaining recognition as a therapeutic modality. This notion of animals as having a healing effect on humans is almost intuitive, considering our history in seeking their companionship. When looking at the therapeutic value of the human-animal bond in alleviating pain and associated symptoms, research is in its initial stages.
Explore more about pet therapy . . .


Light up the Night

Beth worked hard to get councils to light up public buildings for May 12th.  Here are three of them.


Fibromyalgia News Today Weekly Digest
See below for a brief overview of last week's articles. Click through to read each piece in its entirety:

Into the Fire: Summer Heat with Fibro

To most people, summer is one of the best times of the year. You can go outside in flip-flops instead of snow boots and spend your weekends at cookouts or on a friend’s boat. But when you have fibromyalgia, summer can be miserable. For many fibro sufferers, the rising thermometer during summer heat brings an increase in pain and fatigue. Even though many fibro sufferers start out with problems during rainy and cold seasons, heat sensitivity seems to come along as the disease progresses. If you’re already dreading another summer, follow some of these cool-down tips to make your life more manageable.
Avoid going outdoors during the peak heat of the day. You don’t want to become a shut-in during the summer and should try to make your life as normal as possible. However, the day’s heat is worst in the afternoon, so you may want to limit your outdoor activities to the early morning or late evening. If you do have to be outdoors during the hottest part of the day, wear a hat and stay out of direct sunlight as much as possible.
What else?  . .

Best Exercises for People with Fibromyalgia

Regular exercise is important for everyone. There’s a reason it appears in virtually every health-related article you read: it’s the best thing you can do for your health and to prevent disease. However, even though it’s actually more important to exercise after you’ve been diagnosed with a chronic illness like fibromyalgia, your symptoms can make it harder to get exercise.
If you choose the right exercises, your illness should never have to stop you from being active. If you stay active now, you’re less likely to become completely disabled later, which is one big reason to choose to work out even when you don’t feel like it. Consider the following gentle exercises and lace up those sneakers.
What are they? . .


Healing, Working With and Surviving FM: Day Two of the Fibromyalgia Summit

During Day two of the Fibromyalgia Summit a "Paleo Mom (with a PhD mind you), a chronic illness work coach (who herself has two chronic illnesses), two doctors (one of whom had ME/CFS/FM), a functional medicine practitioner, the founder of the largest yoga school in the world, a homeopath, and the survivor of a traumatic brain injury will speak on healing and working with fibromyalgia.

Go to . . .

Nobody Knows What Chronic Fatigue Syndrome / Fibromyalgia is Really Like (Probably Not Even You!)

Dan has recovered from ME/CFS/FM but the memories linger. Recently on a walk he was overcome by his realization of how very, very difficult life had been back then. Compassion flooded over him and he realized that if he could go back in time he would tell his former self one thing that would have helped immensely.
Find out what that was . . .


Timely News!

On the eve of International Awareness Day for Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome(CFS), Fibromyalgia (FM), Multiple Chemical Sensitivities (MCS) I am happy to be the bearer of good news!
The government of Ontario has just announced that a Task Force for Environmental Health has been formed, chaired by Dr. Howard Hu, Dean of the University of Toronto’s Dala Lana School of Public Health. Its primary task will be to advise the Minister of Health and Long Term Care on how to provide better evidence-based care for people with environmentally-linked conditions, notably Multiple Chemical Sensitivities (MCS), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia. If you have one or more of these conditions, or if you know someone who does, it is clear to you that the needs of patients with these conditions are not being met. People who suffer from these conditions are faced with medical issues (obtaining the right diagnosis and medical support), financial issues (obtaining disability benefits and other financial support) and social issues (significant loss of quality of life, prejudice, and friends and family who do not understand).
Read on . . .


Expert: Nondrug Therapies May Be Most Effective Treatments for Fibromyalgia Pain

Given that fibromyalgia pain stems primarily from the central nervous system (CNS), nonpharmacologic therapies may provide greater benefits than opioids and narcotic analgesics, according to a presenter at the 2015 American Pain Society Annual Scientific Meeting.
Fibromyalgia, now largely considered a lifelong CNS disorder—and the second most common rheumatic disorder after osteoarthritis—is still widely misunderstood and can be difficult to diagnose, according to Daniel Clauw, MD, professor of anesthesiology at the University of Michigan, Ann Arbor.
“Fibromyalgia can be thought of both as a discrete disease and also as a final common pathway of pain centralization and chronification,” said Dr. Clauw during a plenary session on the neurologic basis for fibromyalgia. “The condition can be hard to diagnose if one isn’t familiar with classic symptoms because there isn’t a single cause and no outward signs.”
Read on . . .


Outsmart chronic pain.

Quell’s patented, 100% drug free OptiTherapy® technology automatically adjusts therapy and dose to ensure you receive optimal pain relief. It even senses when you are sleeping and adjusts to a gentler mode.
Quell is more than just innovative technology. Every aspect of the product is designed for wearability and comfort. Quell’s slim, lightweight design ensures that it is as discreet as it is powerful.
 Innovative technology.
Not to be confused with a sports band or brace, Quell packs a powerful punch of advanced neurotechnology. It's precise, powerful and personalized to your needs.
Learn more about tech specs.
Accelerometer assists Quell in automatically transitioning between therapy levels to meet your body’s needs.
Bluetooth® technology connects to an enhanced smartphone app which allows you to control therapy and track 8 important dimensions of sleep and therapy trends.
Lithium ion rechargeable battery now provides up to 25% longer battery life, which will typically provide between 30 and 40 hours of therapy.
Find out how Quell works. . .
This product is reviewed by Donna Gregory in her blog . . .  


23 Truths People With Fibromyalgia Wish Others Understood

Fibromyalgia is a chronic pain disorder that affects an estimated 10 million people in the United States, according to the National Fibromyalgia Association. It’s unpredictable and symptoms vary, but it’s generally characterized by chronic widespread pain, fatigue, abnormal pain processing, sleep disorders, fatigue, problems with cognitive functioning, migraines, anxiety and depression.
Symptoms come and go, and no cure exists, but experts have found a number of treatments that may help improve functionality. Fibromyalgia is more prevalent in women, and research indicates there could be a genetic component as well. But despite the large number of people who live with it, the average person knows very little about fibromyalgia.
The Mighty teamed up with the National Fibromyalgia Association and asked their community what they wish others understood about the disease. Here’s what they had to say:
Read the list . . .  
And watch the video . . .

Chronic Illness on The Mighty
"It's a chronic condition. I'm not going to 'feel better soon.'"

Things We Have to Deal With - By Adrienne Dellwo

Having a chronic illness like fibromyalgia or ME/CFS doesn't just mean dealing with one thing. Instead, we've got dozens ... maybe hundreds ... of issues that come up. They can be physical, mental, emotional or social. This week, we'll look at a few of those issues and how you can manage them.
Take care of yourself!
Read Adrienne's articles . . .


This section is included because it provides general health education, but not necessarily fibro related.

I am shortly going to take a break from blogging about fibromyalgia.  I have other health issues which I need to deal with which will take much of my time.  So I will be saying au revoir in a while.  You are my fibro friends and you will always be dear to my heart.  I will endeavour to keep you updated from time to time, or I may return to FMS eNews on a regular basis in the future.   Meanwhile, I wish you all well .  The blog will stay on-line and you can refer to past issues at any time.
Well wishes

or leave your comments below under 'Post a Comment'

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 GREEN like the dividers.  This blog gives just a taster of each article which can be viewed in full through its link.  The sites included are in alphabetical order.  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 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 any way 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 although I do work in conjunction with other bloggers and Facebook groups.
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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