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FMS eNews 23/01/2016


  • I think that news of the week is that Tarragona, a city in Spain, is developing a specific support programme for people with CSS (Central Sensitivity Syndrome) which includes FM, and their families.  You can read about it in 'Seriously Sensitive to Pollution' below.  
  • The penny has dropped that 'approved' drugs for FM are not working.
  • FibroFlare Magazine has produced necklaces for FM Awareness.
  • FollyPogs has funded a survey produced by Sheffield Hallam University.

All the above are expanded below - and much more besides FYI.
Enjoy!


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WORDz for the WEEK

256.  May your trails be crooked, winding, risky and dangerous, leading you to the most amazing view.  May your mountains rise into and above the clouds.


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Making Healthy Changes to Your Life


This is about the time most of us start giving up on resolutions, no matter how well-intentioned we were when we made them. Whether you made some or not, it's always good to look at what healthy changes you can make.
To boost those efforts, I've included a selection of articles about healthy changes that just might help you manage life with a chronic illness a little better.
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert


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The effect of health goals on health outcomes (study)


There are two types of people – internals and externals. Internals take the blame for everything because they feel that they are in control of the world around them, of how they react, how they behave, and even what happens to them.  Externals look to the world around them for answers, when things aren’t working they blame others. The truth isn’t really so black and white as most of us are actually somewhere in the gray area – internals in some parts of our lives and externals in others.
The question is are you an internal or an external when it comes to your health?
Do you believe you can have an effect on your health through changes you make? Or, are you simply relying on (and waiting for) doctors to have the answers?
Which category/cluster are you in?  Find out!


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2015 Juice Cleanse


Four years ago I completed my first juice fast. As I’ve thought back to that time I would have sworn that it was a seven-day juice cleanse, but reading back through my blog has shown me I was wrong. It was only a five-day juice cleanse.  This last year I’ve found my diet slipping in a lot of ways. Mainly, I’ve been eating less and less fruits and veggies as my stomach has complained more and more about them. I’ve also not been juicing regularly the last six months or so. I wanted to change that. I wanted to get my energy back up and reset my taste buds. So, I set out to do a seven-day juice cleanse to start this year off right.
Find out how it went . . .


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You are Possible Despite Chronic Illness #IAmPossible


This week a new book will be released, a book that I’m proud to be a part of. This book, The i’Mpossible Project: Reengaging With Life, Creating a New You, shares the stories of 50 individuals who have overcome adversity in some form to create a new life. There are stories (like mine) of chronic illness, stories of loss, stories of those who have overcome mental health issues, suicides averted, abuse, coming out of the closet, and so much more. This is a book about reminding us all that You are Possible, despite whatever you’ve had to deal with in life.
We all have a story to share. We have all overcome something and come out the other side.  Some of us are still fighting through, and some of us will be fighting for the rest of our lives. Each day that we choose to keep fighting we are overcoming. We are winning.
Tell the world why you are possible with the hashtag #IAMPOSSIBLE


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Canadian researchers say gabapentin (Neurontin), pregabalin (Lyrica) and duloxetine (Cymbalta) aren’t very effective as a treatment for chronic pain and are way overprescribed.
Speaking of which … The Advisory Council on the Misuse of Drugs in the U.K. recommends pregabalin (Lyrica) and gabapentin (Neurontin) be rescheduled as Class C controlled substances amid abuse concerns.
Cort Johnson from Health Rising compiles a fantastic resource page for people with fibromyalgia and/or ME/CFS who are struggling with sleep. You’ll find links to research, treatments and other helpful resources. This one is definitely worth the click!
Looking for a change of scenery? Then you might want to consider moving to this Spanish city, which has become the first municipality to adopt a plan in support of people with ME/CFS, fibromyalgia and other central sensitivity syndromes.
And more besides . . .


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Awareness Ribbons Necklaces

Pre Order and pay by 20th February to guarantee delivery before May 12th. 

£5 + 63p P&P UK postage.  Overseas, extra postage as applicable.

Paypal: fibroflaremag1@outlook.com

See Feb issue of the magazine for more details (due out 1st Feb). 



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5 Supplements Every Fibromyalgia Sufferer Should Take


A wise physician and biochemist once noted, “For every drug that benefits a patient, there is a natural substance that can achieve the same effect.”  For many ailments, the key to addressing the underlying cause and restoring some level of peace can be found through natural options like vitamins, minerals or herbs. The same holds true for chronic pain.
There are natural nutrients that can help alleviate many of the symptoms of a chronic illness like fibromyalgia. Studies have shown the potential of these nutrients to help attack the root cause of chronic pain and lower the frequency and intensity of pain – as well as that of other symptoms such as fatigue and brain fog. Lets take a look at five of the most effective natural substances for fighting the symptoms of fibromyalgia:
What are the five?


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When It’s Not All ME/CFS/FM: How a Sleep Study Turned One Chronic Fatigue Syndrome Patient’s Life Around


Not sleeping well? Experiencing a lot of daytime sleepiness? Not thinking clearly? These symptoms are all common to chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) but they don’t always entirely derive from it… not even in people with ME/CFS/FM.
If the experience of one person with chronic fatigue syndrome is at all representative, thinking that all your symptoms come from ME/CFS or FM could be costing you dearly in energy and health.
Find out more . . .


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Are Chronic Fatigue Syndrome and Fibromyalgia Related to Parkinson’s Disease?


The Chronic Pain Connection
From “hand-warmers” to ion channel blockers to magnetic field generators more and more different approaches to get at the basis of chronic pain are being tried. Now comes an entirely different approach.
First, studies indicated that in rodents, chronic pain neurons thought to be associated with negative emotions showed increased activity after the onset of the pain. Those neuron’s connections to other parts of the brain associated with depression, also increased. The neuronal activity was associated with a drop in dopamine levels.
Combining a Parkinson’s drug called L-dopa with a non-steroidal anti-inflammatory drug completely eliminated any signs that an animal model was feeling pain. A clinical trial in humans is underway.
Find out more . . .


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Fibromyalgia: A Very Different Disease


Rheumatologists, the specialists many people with fibromyalgia see, treat people with diseases of the joints and muscles and immune problems. These diseases run the gamut from many types of arthritic disorders to autoimmune diseases such as lupus and Sjogren's syndrome to gout and hard to classify disorders such as fibromyalgia (FM).
A recent survey of symptom patterns in rheumatological patients seen over a year at an Israeli hospital provided an opportunity to see where FM patients fit into this mix.
The mixture included some heavy duty illnesses - some of which can kill and many of which are painful, as well as"little" fibromyalgia - a disease that still gets little respect from the NIH and many rheumatologists. Let's see how FM stacked up against some heavyweights.
Read The Study


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Next Level Living Episode 1: Why Do We Sleep?

This Is Why Sleep Is So Important
We're excited to announce our new 10-part HuffPost Originals video series called Next Level Living,  which will explore the science that underpins our lifestyle choices. It'll cover topics around issues of wellness featuring smart breakdowns from experts to make us more knowledgeable about how our own bodies function. The project explores the science behind our habits, from why we need rest to why we crave social connections. Based on current research, each video will also offer tips on how to improve well-being. Think of it as a guide to hacking your life through science.
Our first episode covers sleep -- because getting the right amount of sleep is not only crucial to our well-being, it's also paramount to our survival. 
Next Level Living Episode 1: Why Do We Sleep?  


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Folly Pogs/Sheffield Hallam University Research Survey for Fibromyalgia


Nice to have some good news. I am pleased to tell you that the delegates, the volunteer team, and the Conference raised enough money in 2015 for us to support our first Folly Pogs Fibromyalgia Research project. 
Working with Dr. Kim Lawson and Dr. Simon Ashe from Sheffield Hallam University and their research team, they have put together a survey with our funding.  
NOW WE NEED YOUR CO-OPERATION PLEASE.  Will you read the information booklet that follows, and complete the survey, clicking the right button at the end?  This must be completed by March 31st the very latest. Thank you.
We hope this will lead to a step in the fibromyalgia direction to improve lives one way or another. 
We are hoping to hear the results and prospects for this research, at the next Fibromyalgia Conference April 15/18 2016… in a few weeks time. So pat yourself on the back if you came last year. Having raised money for the survey, we hope YOU are now completing this survey to make an improvement in our lives. 
Read on . . .
Link to the actual survey 


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Top 10 NLO|Fibromyalgia Articles of 2015

10. Coping with Fibromyalgia Back Pain 
9. The Danger of Saying ‘It’s Probably My Fibro’  
8. 10 Things Not to Say to Someone with Fibromyalgia 
7. Trying Cannabis for Fibromyalgia Pain  
6. Fibro Sensitivity and Pain  
5. Managing Fibromyalgia Night Sweats and Hot Flashes 
4. Fibromyalgia and Emotional Sensitivity  
3. Fibromyalgia Numbness: Causes and Coping 
2. Fibromyalgia and Noise Sensitivity  
1. Fibromyalgia and Cognitive Problems  


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Aching for Pain Relief? 


Pain is an ever-present problem for people who suffer from a number of chronic illnesses. It is the primary symptom in diseases like fibromyalgia, lupus, osteoarthritis and rheumatoid arthritis; and it may be a secondary, nonetheless significant, symptom in illnesses such as myalgic encephalomyelitis, chronic fatigue syndrome, Lyme disease, multiple sclerosis and many others. . . . . In an effort to help provide some relief, ProHealth has developed Fibro Soothe, a specialized formulation of natural herbs and other nutrients specifically designed to support a healthy inflammation response while also addressing joint and muscle discomfort.
Read about it . . .
(Not sure whether free shipping is available outsite USA. S)


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First Municipal Government Adopts Life Saving Plan for People With MCS/ES, CFS/ME, and FM

RESCUE PLAN FOR PEOPLE WITH CENTRAL SENSITIVITY SYNDROMES:
THE CITY OF TARRAGONA (CATALONIA, SPAIN) IS THE FIRST MUNICIPAL GOVERNMENT THAT IMPLEMENTS IT!
The first municipal government that has stepped forward to implement this plan, is the City of Tarragona Municipal Government (Tarragona is a major city 100 kilometres south of Barcelona). In the plenary session held last November 30th, the “Institutional Declaration of support for people with Central Sensitivity Syndromes” was approved, which consists of a concrete programme of measures. This is a historical step.
In part, the agreement includes:
FIRST. Create and develop a specific support programme for people with CSS and their families in the City of Tarragona, in which the representatives of those affected have to be involved and which will include:
Find out what . . .
(Full marks and three cheers for the Tarragona Municipal Government. What a wonderful, understanding, caring, educated and sympathetic scheme. Here's hoping its ethics and administration spread throughout Spain and elsewhere. 
Read the full article. It is a non-perfect translation, but good enough to understand! I take my hat off to them! S)


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This has been a somewhat stressful week.  My husband suffered a TIA (Transient Ischaemic Attack/mini stroke) on Sunday, so has to take life slowly!  No ill effects on me, so far.
Hope you are keeping positive.
Fondest wishes
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 GREEN 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 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 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 fmsstella@gmail.com and you will be added to the emailing list.

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FMS eNews 16/01/2016

Fibromyalgia is the most Googled medical condition; new hope in suggested treatments - Vagus Nerve Stimulation, Avacen 100, almond milk and pro/prebiotics.  The sublime to the ridiculous???  You can find them all in the items below.

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WORDz for the WEEK

255.  You don't need eyes to see - you need vision.


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Top Articles from 2015: Symptoms, Simple Explanations & More

Welcome to 2016! I hope you've managed to recover well from the holidays -- I think I'm just about there myself. This week, we'll take a look back at the Top 8 articles from 2015.
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert


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Could Stress be the cause of your Nerve Tingling?

Some people experience nerve tingling in their hands and/or their feet.The condition is one that is bothersome as well as uncomfortable.The tingling sensations are those that we all have experienced at one time or another.
Continue reading
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Paresthesia: One of Fibromyalgia's Nastiest Symptoms

Many people experience paresthesia that is very painful. It is one of fibromyalgia’s nastiest symptoms, but fortunately it is also one that has a variety of treatment options available. Individuals with paresthesia as a symptom of fibromyalgia should make an appointment with their health care professional immediately to discuss potential treatment options. 
Continue reading
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Is Almond Milk Good For Fibromyalgia?

Fibromyalgia is a serious and chronic condition, often misdiagnosed in favor of other diagnoses or it is over-diagnosed as a favor to new pharmaceutical marketing? 


Continue reading
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12 BLOGGERS SHARE THEIR BEST TIPS FOR REDUCING FIBROMYALGIA SYMPTOMS




I am a problem solver by nature, so when I was diagnosed with fibromyalgia two years ago, I obsessively researched information on the best strategies for reducing fibromyalgia symptoms. I found out there are no easy answers. Certain drugs work for some and not for others. Some people find relief through massage, and others howl from pain at the thought of it. Most of us have medicine cabinets full of supplements that promised to ease our pain or exhaustion. Some helped, and some didn’t. Some of us find exercise helpful, and some of us silently scream every time someone mentions it.  
Fibromyalgia sufferers are a complicated bunch, but I do believe we can learn from what has worked for others. So, I’ve asked a bunch of my fellow fibromyalgia bloggers to answer the following question: What has helped the most for reducing fibromyalgia symptoms?
I think you’ll find their answers interesting, and some are even a bit unexpected. After reading these, I’d love for you to leave your own tip in the comments!
Read what they all say  (I am one of them! S]


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The Perfect Pain

I think that I can speak for most of us with Fibromyalgia when I say that we can’t really be sure of the first time we knew we had the condition aside from our final diagnosis. Fibromyalgia has a nasty habit of creeping up on you and before you know it, you have succumbed to fatigue, pain, depression and life never feels exactly the same again. Sound familiar??
Certainly for me, I was kind of aware when things changed……October 1989.
I was tired beyond belief, not the usual feeling out of sorts but an overwhelming fatigue that saw me just existing on work and sleep, nothing more. Next, Irritable Bowel Syndrome (IBS) hit me big time. Unbearable pain and bowel spasms resulted in endless tests and investigations but with no cure. I can’t even remember how the pain crept in but it did, slowly, like a stealth Ninga who pride themselves on a “You can’t see me but I am there” kind of motto.
Read more . . .


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Self-Care Isn’t Selfish - 9 Tips to implement healthy self-care


Even if you’ve never flown before, I’m sure your aware of the speech given by the flight attendants as you taxi down the runway.  They tell you, in case of an emergency, to put on your own facemask first – before you help those around you. We all seem to understand their logic. How can we help others if we can’t breathe?
The same holds true for us in our daily lives.
You have to be sure you’re as healthy and strong as possible before you can begin to take care of others.
Read on .  . .


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When Chronic Illness Leaves You Asking, “Why Me?”


I have a 3 year old grandson named Levi. He’s the joy of my life.
Three is an amazing age. The world is opening up and you begin to see there is a bigger world around you. Far bigger than the toys that once were set in front of you, directly within reach. You’re walking, learning and wondering.
Levi’s always wondering.
Can you guess his favorite question right now? “Why?”
His “Why?” follows almost every sentence you say to him.
Let’s get in Grammy’s car? Why?
Don’t touch that! Why?
It’s time to clean up. Why?
You need to stop asking why. Why?
Because. Because why?
The other day we were going through another episode of the why-this-and-that saga and my answers were getting very close to the just-because line when my 21 year old son, Austin, took over.
“Dude,  just accept that some stuff just happens.”
Finish reading the article. . .


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The Best, Least, Biggest and Strangest: An ME/CFS and FM Look Back at 2015


Zahe Nahle

  • News, People and Organizations
  • Research
  • Treatment and Symptoms
  • Advocacy

(Many items under each heading)

Find out what they are . . .


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Vagus Nerve Stimulation, Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)


Vagus nerve stimulation is one of the most promising chronic pain interventions under development today. An earlier blog on Health Rising featured an astonishing story of a woman whose very severe fibromyalgia was largely ameliorated by a vagus nerve stimulator implant.
She was part of a small 2011 study which suggested that VNS may be very effective in fibromyalgia. The study was small but the success rate was high.  Dr. Natelson, a neurologist who’s been treating and researching FM and ME/CFS for decades said:
“The results blew me away. I have never seen an effect as powerful as this.”
Many of the participants in that study no longer met the criteria for FM after it: that’s a criteria for success that few FM studies are willing to even contemplate using.
Read on . . .


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Did Probiotics Cure My Chronic Fatigue Syndrome?


Carol’s Story
I didn’t have anything to lose. Or at least that’s the way I felt. I’d been sick for so very long.
So experimenting with probiotics was something I was willing to do. The experiment was a success and because of it I want to share what I did, and why, in hopes that others might benefit. If you want to jump directly to my protocol, click here. If you want to learn how I reached this point, continue reading.
Autoimmune Diseases and ME/CFS
I was diagnosed with my first autoimmune disease at age 8. They thought I had rheumatoid arthritis. By age 12, Hashimoto’s thyroiditis and pre-diabetes were added to the diagnosis. As the years went by I struggled on and off with a variety of other illnesses. I had periods of good health and other times when I was completely bedridden.
Like many people with ME/CFS Carol’s many symptoms and conditions didn’t fit any one disease. In the end doctors settled on ME/CFS and/or atypical multiple sclerosis.
By the time I lost my job of 18 years due to my illness, I was still diagnosed with Hashimoto’s and diabetes, but also struggled with psoriasis, restless leg syndrome. depression, brain fog, irritable bowel syndrome, an intermittent inability to find words and form sentences, zero short term memory, balance problems, brain fog, lost time, low grade fevers, and on and on.
Read more . . .


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ME/CFS and Fibromyalgia Patients on Drugs For Better Sleep


In Health Rising's Sleep Survey people with ME/CFS and FM rated how effective many sleep drugs and other treatments were for them. We also asked for comments - and got hundreds of them. This resource covers comments made regarding those drugs and others.
 In this report the comment is usually just listed unedited. The number of times someone simply stated a drug's name and made no other comment is presented like this. 
Zipliclone (Zimovane) - 3x's
The comments indicated that people with ME/CFS and FM are using a wide variety of drugs to help them sleep.
See what they are . . .


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ME/CFS and Fibromyalgia Patients on Drug Combinations For Better Sleep

Many people worry about taking combinations of drugs for sleep. Dr. Teitelbaum, however, believes getting better sleep is so important that if one drug doesn't do it, then he has little problem adding another (or another).
Teitelbaum uses as low as possible doses of several drugs to improve sleep. (Only do this under your doctor's supervision, of course.)
Dr. Teitelbaum on optimizing the use of sleep medications
Check out drug combinations that some people with ME/CFS/FM reported they used in Health Rising's Sleep Survey.
See what they are . . .


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Lending a Hand: A Very Different Approach To Fibromyalgia


And now for something completely different. Forget the drugs - how about putting your hand in something and watching the pain ebb away... Science fiction? One company thinks not.
The AVACEN corporation touts their AVACEN 100 as the only medical device that's able to provide noninvasive, rapid whole-body muscular relaxation. They assert that simply applying the AVACEN 100 to the blood vessels of the hand will increase the blood flows throughout your body, releasing muscle tension, increasing your core body temperature and reducing sympathetic nervous system activation.
See Avacen's website 



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WORRYING NEWS AS MORE AND MORE GP PRACTICES CLOSE

This ‘HOT’ news release has dropped on my desk top at 6pm today with worrying news for 2016 for those of us who may need medical help in the near future.
Written by the Editor of Pulse Weekly, Nigel Praities warns of problems even before the first week of the  New Year has ended.
Why the Government and the medical profession seem unable to find the middle ground, while the majority of patients have no problems with their GP… I must admit some folk do get vexed while waiting for an appointment in the ‘future’. But to be fair our GPs do help us get better in many cases.
Read the full article . . .

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FibCon April 15th-18th 2016, Chichester Park Hotel


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Looking on the Bright Side: Good Things About Fibromyalgia


Whenever you hear about fibromyalgia, or any other chronic illness for that matter, you will primarily hear about all of the negative aspects of it. That is because there are a lot of them. Being chronically ill is an extremely difficult thing to deal with and can easily lead to depression.
That it is why it is so necessary, vital even, to pause and reflect on some of the benefits and positive aspects of chronic illness. I know, I know, that sounds like an oxymoron. You’re thinking, “What in the world could be a benefit of having a chronic illness?” Well, let me tell you.
Read on . . .


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5 Ways Having Fibromyalgia Makes You Awesome

Today I dropped a bunch of two-by-fours on my foot. It’s swollen and bruised, but after letting off a few swear words I went back to my original task. My son asked me if I was going to rest my foot and was surprised when I told him no. His question made me realize that I’m just used to functioning on a much higher level of pain than normal people. What’s a swollen foot compared to pain spread throughout your entire body?
That’s when I realized I was awesome and kind of a bad ass. Not only am I awesome, but so is anyone else with fibromyalgia or any other chronic illness.
Here are five ways fibromyalgia makes you awesome (and a straight-up bad ass!).
1. You have a real-life superpower.
2. You sympathize with others.
3. You can find joy in the smallest things.
4. You adapt well to change.
5. You are a medical expert.


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The UK's most searched illnesses


The UK's most Googled conditions have been revealed in a new study carried out by an online medical service.
Dr Morton's – 'The Medical Helpline' – says fibromyalgia was 2015's top condition searched for by people before calling a GP. Symptoms include all-over body pain, severe tiredness and problems with sleep, with the long-term condition particularly common in women.
The NHS estimates that up to one in 20 UK residents have the condition, but it is difficult to diagnose which may explain why it tops the list with more than one million searches this year alone.


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Newsletter! Jan. 15th, 2016

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I wish you all "Wellness".
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 GREEN 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 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 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 fmsstella@gmail.com and you will be added to the emailing list.

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