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FMS eNews 27/02/2016

This week there are several items about arts and crafts (after my own heart!) and their advantages, despite chronic illness.  I did a vast amount of reading this week but rejected many sites because they turned out to be off-topic, or they had so many adverts popping up I couldn't see all the text!  I hope that what I did select will be of interest to you.


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WORDz for the WEEK

261. Ignore the little 'speed bump' in the road. . . It is designed to SLOW your forward momentum, NOT stop it!


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Possible Cause of Pain, Brain Fog Discovered


I'm really excited about the discovery below, about something that's long been overlooked in the brain and the impact it may be having on us. Find out how tiny little cells that are part of the brain's immune system could be causing some of our worst symptoms.
From there on, we'll continue talking about pain and brain fog, including some of the most prominent aspects of our cognitive dysfunction.
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert
Read all Adrienne's articles . . .


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It's the 'Double Whammy'!  You're already dealing with all the symptoms of a FMS or CFS flare-up, and sure enough, you can feel the ol' familiar signs of an oncoming virus/cold/flu etc.  Post nasal drip aggravates the back of your throat, additional aches and pains attack your already weakened joints, and your eyes start to look as if you've been watching 'P.S. I Love You' for the first time.  Yep.  You've caught the same thing that's being passed around to everyone else.  But, unlike everyone else, your immune system is already damaged.  In fact, if you had to sum up FMS/CFS it would be, 'compromised immune system'.
Read on to find out what the '4 Ways' are . . .


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24 February 2016 Update


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Addicted to #crafting? #Spoonie crafting: guilt, welfare, self-esteem and isolation


My name is Laura. I’m 38, I’m a spoonie (here) and I’m addicted to crafting and make jewellery. . .(mainly)!
There you have it, I’ve fessed up. It feels a bit like a naughty secret that I make jewellery, which is the most ridiculous juxtaposition because I advertise it on my personal and business Facebook page, Twitter, Etsy, Instagram and on some host sites, such as the awesome Conscious Crafties. I obviously want to advertise and give out loyalty/business cards and join in networking as much as I can because I undeniably enjoy selling what I make. I can only sell online because my illness is so severe that I am housebound and mostly bedbound, but I am hoping that one day I will be able to sell at a craft fair. At the moment, any sale style is just an added benefit and I’m certainly not running a profitable business (at a loss really). I really just enjoy creating jewellery and have done so both pre and post chronic illness.
Read Laura's story here . . .


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Inspired By Illness: Artistic Spoonies


About a year ago I shared the stories of several people who were inspired by illness. I’m so happy when I come across others who have found a new passion as a result of the terrible things that have befallen them. Illness sucks, but we’ve got to be able to make something positive out of it, or we just live in misery.
The last few months I’ve seen my friend Nick share some amazing spoonie artwork and it was my desire to share that artwork with you that inspired this post. But, Nick isn’t alone. I’ve been blessed to get to know others who have been inspired by their illness to create amazing things, and even to create a place for other spoonies to sell their amazing things.
The Artists

  1.  Nick Lutes
  2.  Donna Falcone
  3.  Karen
  4.  Sonia

Find out what they all do . . .


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Fibromyalgia Warriors – Krissy Ward


This week we’ve got a new Fibro Warrior in the hotseat.  Krissy Ward is from Milwaukee, WI. She’s 26, but was diagnosed with Fibromyalgia at the age of 16. She’s single and has no kids but says she gets the best of both worlds with her seven godchildren. She gets to love them as much as she wants and take them back home when she’s ready.
Read Krissy's story . . .


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4 BENEFITS OF COLOURING BOOKS FOR ADULTS WITH A CHRONIC ILLNESS


Colouring in books for adults are becoming an increasingly popular trend. Although colouring books are usually associated with kids and playtime, today more and more companies are making colouring books for adults in addition to children. I even have one myself! There is good reason for their rise in popularity, as they have been shown to have many positive benefits. But just what are the benefits of using colouring books and – more specifically– how do they help those of us with a chronic illness? Below I have listed a few, which I hope will show you that colouring books are worth investing in.
1. Stress relief
2. Breaking the monotony of the day
3. Colouring relieves anxiety
4. Colouring enhances creativity
Read more details here . . .


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WEEK OF FEB. 22, 2016 FIBROMYALGIA AND ME/CFS NEWS

(Congratulations to Donna on being appointed as National Pain Report‘s new fibromyalgia editor.)


Top stories …
It’s not often that I say this, but well done, Mr. President: Obama rejects limits on opioid prescribing. “If we go to the doctors right now and say ‘Don’t overprescribe’ without providing some mechanisms for people in these communities to deal with the pain that they have or the issues that they have, then we’re not going to solve the problem,” he says.
Dr. Jarred Younger, best known for his research on using low-dose naltrexone for fibromyalgia, will host a live question-and-answer session on YouTube on Thursday, March 3 at 3 p.m. CT. Submit your questions early at jarredyoungerlab [at] gmail.com. (See below under YouTube.)
From HuffPost: “Why is marijuana banned? The real reasons are worse than you think”
Combining pregabalin (Lyrica) and paroxetine (Paxil) increases drug tolerability and reduces depressive symptoms associated with fibromyalgia. Another story on the same study: “Fibromyalgia study finds Paroxetine [Paxil] best of newer antidepressants to combine with drug treatment”
Heroin users who died from overdoses were also abusing pregabalin (Lyrica) and gabapentin (Neuronton), finds U.K. multi-agency panel.
City employee in Savannah, Georgia, says she was fired after she developed fibromyalgia and asked for special accommodations at work.
Virginia physician loses license after medical board found he overprescribed narcotics to patient with fibromyalgia.
And loads more besides . . .


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FIBROMYALGIA APRIL 2016 CONFERENCE HAS BEEN CANCELLED DUE TO LACK OF BOOKINGS



Sadly this has been cancelled and refunds are being sorted. The conference always raised much needed funds for research and this is going to be severely impacted - so I'm here with my begging bowl, please, please, please can you help? If you can spare anything, at any time during the year it is very much needed .... would be a shame to have to give up when the first step is already underway. Wish we could rely on the Government but that's obviously not going to happen so it really is up to us to do it for ourselves. The link below will take you to our donations page. Thank you. Beth X 
https://fundrazr.com/campaigns/011gIe/ab/052Tm7
Read the full announcement 
PDF version 


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How Sugar Wreaks Havoc on Fibromyalgia (And the Amazingly Simple Way to Beat It)


It’s 3 p.m. and I’m at my office desk. I fidget restlessly in my chair. The afternoon crash is starting to hit me. I tell myself to stay strong – just drink some water and push through it. Then I glimpse the soft, inviting glow of the soda machine sitting just 20 feet away in the break room. My heart flutters. As determined as I am to win this battle, in my heart I know I have already lost.
I grab my quarters and walk anxiously (and somewhat ashamedly) to the machine to get my afternoon fix. As the sweet taste of Coke touches my tongue, by body rewards me with by releasing pleasure endorphins. Mmmmm…so delicious.
I’ll do better tomorrow, I tell myself – as I do every afternoon around this same time.
Find out how to combat sugar . . .


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MedNexus.io – Review

Hello folks. This is a review of a nifty new site called MedNexus. This is a medical search engine designed for patients. I am all for this since I firmly believe we should all be our own health advocates, I actively encourage people to be well-informed about their own health conditions but not all websites are full of reliable information! This site has the potential to make sure patients are reading accurate, condition-specific info.
First impressions are good, the site is clear and well laid out with a neutral and non-migraine-inducing colour scheme. I also like the font size and obvious search bar.
Find out more . . .


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The Therapeutic Science Of Adult Coloring Books: How This Childhood Pastime Helps Adults Relieve Stress


Coloring used to be reserved for children and the occasional adult who got to babysit them, but recently, the activity has found a different demographic. What started as a niche hobby has now turned into an international trend, as adult coloring books find themselves on more and more bestsellers’ lists throughout the world. However, while this trend may be a fun way to pass the time, it’s the books’ therapeutic properties that really have them flying off shelves.
The Healing Power Of Art
Art may not be able to cure disease, but it can surely make coping with it a lot better. Researchers have acknowledged the therapeutic qualities of art for years, and today, art therapy is used to help people express themselves when what they’re feeling is too difficult to put into words, such as when they’re faced with a cancer diagnosis.
Read more . . .


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Your health and medical questions, answered.

Explore based on these search options - Recent searches, Common. Chronic and Seasonal.
Find out more about any medical condition . . .


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What’s the Difference Between Fibromyalgia and Polymyalgia?

Knowing Your ‘Myalgias’
What’s the Difference Between Fibromyalgia and Polymyalgia?For many, every day is a battle with muscle pain, stiffness and fatigue. Unfortunately those are common symptoms of multiple conditions, so sometimes it isn’t easy to know exactly what you are experiencing.
Do you truly know your “myalgias”? You can help your physician give an informed diagnosis by understanding the differences between very similar conditions such as fibromyalgia and polymyalgia, so you can better explain and discuss your symptoms with him or her.
The word “myalgia” means pain within the muscles. Fibromyalgia and polymyalgia are conditions with symptoms that may be hard to tell apart, both characterized by muscle pain. When you have polymyalgia, you feel pain and stiffness in the muscles in your shoulders, arms, hips, and neck. This feeling often comes after you’ve spent time resting. Fibromyalgia can also cause muscle pain and stiffness in the same parts of the body.
But aside from the similar characteristics concerning the muscles, many aspects of the conditions differ.
Find out what are the differences . . .


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Trying Hypnotherapy for Fibromyalgia Pain

NewLifeOutlook contributor, Sarah Borien, details her experience of hypnotherapy as an alternative treatment option for those suffering from fibromyalgia and chronic pain. 




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CHRONIC ILLNESS DETOXING


I am a huge advocate for the power of sharing the highs and low of living with chronic illness. Hence me writing a blog about my life now I guess.
It took a while for me to out myself/ hang out my dirty laundry/show the real me. Trust me when I say it takes great strength to share your emotions, your ordinary life, your illness.
Contrary to what some believe, it is not us being needy.
Wowzer, that emotion is not in my vocabulary!
For me, during the early stages, I hid away.  I tried to continue as normal for so long, using the days between flares as times when I would allow outsiders into my life. I hid the painful days.
I felt alienated from my then current circle of friends and colleagues.
What happened next? . . .


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Way too many fibromyalgia symptoms!!

Do You Have Fibromyalgia?  Check out the video below!
It usually takes 5 years (on average) for most people go get an accurate diagnosis of fibromyalgia. This is because Fibromyalgia can be difficult to diagnose.




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Q&A with Younger Lab Researchers

"What is fibromyalgia and What is ME/CFS?" are the topics for the first YouTube Live Q&A Broadcast Session hosted by the Younger Lab, officially known as UAB's NeuroInflammation, Pain and Fatigue Lab. You'll be able to ask questions and hear an announcement on recent developments at the lab. 
Send in pre-broadcast questions to jarredyoungerlab@gmail.com Please invite your friends to this event.
Tina Tidmore, of Tidmore Communications, is the broadcast facilitator.

Live stream currently offline

Our first YouTube Live Q&A Broadcast will be on Thursday, March 3 at 3 p.m. CST. Find out about the research at UAB's Neuroinflammation, Pain and Fatigue Lab, also known as the Younger Lab. These sessions are for our scientists to answer questions about our research into the role neuroinflammation may have in chronic pain and chronic fatiguing conditions, such as fibromyalga, ME/CFS (chronic fatigue syndrome or systemic exertion intolerance disease), and Gulf War illnesses. 
Will you participate? . .


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








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This week my husband celebrated his 83rd birthday.  To me it seems like a miracle that we are both still alive, if not particularly well!  So, I do count my blessings.
Have a good week
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.   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 fmsstella@gmail.com and you will be added to the emailing list.

FMS eNews 20/02/16

I am including some more of my fellow Chronic Illness Bloggers' blogs this week.  I hope you find them interesting.  There's more of the old faithful sites as well.  There is so much info available these days it's difficult deciding what NOT to include!  I don't want to give you information overload but I do want you to have USEFUL information. So I hope I am keeping the balance right.

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WORDz for the WEEK

260.  Wasting your time is much worse than having no time at all.  Don't forget that each day is a little life in and of itself.


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I must apologize for failing to get your newsletter put together for two weeks in a row. I blame technical difficulties -- which, for me, means that my brain has failed to track time in any meaningful way and I've dropped all the balls. I'm setting more reminders so that this won't happen again.
So now, here's the newsletter you deserve for the week, which (since it's on my mind a lot right now) includes information on getting and staying organized.
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert

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‘Firing On Zero Pistons’ ~ Tips For Dealing With Extreme Fatigue in FMS & CFS

What if the blood running through your veins suddenly turned to cement?
How would it feel to walk if the air surrounding your body slowly turned to molasses?
The human head weighs approximately 10lbs.  Imagine if your head was abruptly loaded with several heavy stones, and your neck was unable to support the weight for more than a few minutes at a time?
This is what 'chronic fatigue' feels like.
I've experienced a long stretch of time since I last dealt with this FMS symptom.  It's been about 7 months since I have felt this 'dead weight' weariness.  Until yesterday.  It hit me all at once right around 11am.  I woke up, did a few small chores, sat down to do a little work on the computer, and BAM!  I stood up to walk out back, and it was like a 1000lb boulder had been hefted onto my shoulders.
Read on . . . 

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The problem with being sick is a problem

You`re sick.
But that is not the problem.
The problem is that you had the audacity to be Chronically Ill. And that simply is not socially acceptable.
People want to know when you will get 'better'.
They wonder why you 'don't look ill'
They want to know when you will be ready to work.
They want to know how it makes 'sense' you can do things one day, and not another.
They don't want to work with you. Certainly don't want to accommodate you. Being forced to leaves a bad taste in their mouths. Why should they have to conform when clearly you can't 'handle it'?
And why do you decline all those invitations? Or never get any plans done when you say?
Why don't you conform to what a sick person should. Do everything you can to get better and you will, don't you know that?
Read more . . .

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6 suggestions people with Fibromyalgia are tired of hearing

Today I stumbled across a the Fibromyalgia article found here. http://health.usnews.com/health-news/news/articles/2012/08/30/health-tip-living-with-fibromyalgia  I have to admit, I gagged a little bit when I read it. I think this embodies all the problems with Fibromyalgia in one lousy article. These are the suggestions that sick people hear over and over again:

  • Suggestion 1- Get more sleep.
  • Suggestion 2- Exercise
  • Suggestion 3- Make adjustments at work
  • Suggestion 4- Eat healthy food
  • Suggestion 5- Find ways to control pain by asking a  doctor
  • Suggestion 6- Get support from your friends and family

Read Mom's comments on this advice . . .  
Life is not as easy as these articles try to make it, and when people write simplistic articles like this one it only hurts Fibromyalgia patients. I’d appreciate an article about real concrete ways to live a better life with chronic illness.

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TENS Unit for Muscle Pain

TENS stands for Transcutaneous Electrical Nerve Stimulation. It’s a small device that sends currents of electrical energy into your muscles via small pads that are placed on your skin. The pads have an adhesive that allows them to stick directly on the skin so that you can use the device anywhere, even while performing other activities.
I received my first TENS unit about 10 years ago after visiting a physical therapist for lower back and hip pain. The unit had two settings and a range of intensity levels. I found that it helped the pain immensely. Over the years I’ve used the unit for pain in variety of locations. While it typically helps, I did find that it can make my neck pain worse and I can no longer use electrical stimulation at my neck without increasing tightness and pain.
Read the full explanation of its use . . .

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How to Help Your Chronically Ill Friend Feel Worse

You have a friend that is chronically ill, it’s likely that you don’t want to help them feel worse. At least I hope you wouldn’t. But, perhaps you are just mean like that.  If you are a good friend you will read this list and think about whether you have done or said these things and avoid doing/saying them again the future.

  1.  Tell them they should get out more 
  2.  Comment on their messy house

10 more here . . .

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DON’T COMPARE YOUR START TO SOMEONE ELSE’S MIDDLE

It’s a saying that many might think of as cliché but one I see as being absolutely true. It doesn’t matter what the context is, if you compare yourself to others you are undoubtedly going to end up feeling disappointed at best and completely miserable at worst. It’s something we all do– it’s human nature– but it’s worth bringing your awareness towards it and reminding yourself of a few things.
In the online world of chronic illness it can be all too easy to make comparisons. I see it all the time. Instead of coming together, empowering and helping each other there are individuals who sadly fall victim to comparison. Why make pain a competition? What benefit is there to gain from deciding you must be much worse off than everyone else? Or that other people must not have the “real” illness after all?
Read more . . .

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Top stories…
This study has been all over the Internet news sites this week: “Tailored acupuncture might offer some fibromyalgia relief.” (Dona Mercedes Primary Health Center must have a great public relations department.)
Watch what you click or share in Facebook groups: “Facebook pain groups attacked by spammers”
This is the best news you’ll read all day: “Fibromyalgia and chocolate: What new research says about health benefits”
A sweet cure? Chicago woman says her fibromyalgia symptoms disappeared after eating cacao (not to be confused with cocoa) for two months. Now that’s a clinical trial that I’d love to sign up for …
From Grace is Sufficient: Meet “the evil stepsisters of chronic illness” (a little dark humor about the challenges of living with fibromyalgia)

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I know some of you probably rolled your eyes when you read the headline of this story.  I know that because I used to do the same thing.
Since being diagnosed with fibromyalgia, I’ve heard countless people talk about the link between fibromyalgia and gluten, and how going gluten free improved their symptoms. Whenever I’d hear that, I’d always think the same thing: [I] “Fibro can be a living hell of pain and fatigue and everything else. I’ve already given up parts of my life because of this horrible condition. You want me to give up donuts and cake and yeast rolls, too? Are you kidding me? My sweet treats are one of the only things that make life bearable!”
Read Donna's story about gluten . . .

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Vitamin D Might Just Lower Your Fibromyalgia Pain Levels

Could vitamin D be the secret to helping your fibromyalgia pain? A study was published in a recent article of PAIN magazine that explains the effects of vitamin D supplements on sufferers of fibromyalgia who also suffer from vitamin D deficiency. Fibromyalgia is a chronic pain disease characterized by widespread pain, fatigue, sleep disorders, morning stiffness and poor concentration. . .
Read More . . . 

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Relief! A New Pain Resource Opens

Pain research is booming with many new treatments under development. The problem is that most doctors don't know a thing about them. Enter "Relief!" - a non-commercial website produced by professionals that's designed to educate people about the latest and greatest in pain research and treatment.
I'm going to keep my eye on this website, and if you're in pain you might want to as well.
Check it out  . . .

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Professor Coyne how can we thank you enough?

Professor Coyne delivered some strong words at two recent Belfast events.  Talking on "The Scandal of the £5m UK PACE trial: What can be done?", the good professor did not shy away from exposing the deeply rooted problems with both the PACE trial itself, and the manner in which patients have been vilified by the media.
His first presentation was to a packed room of patients and carers in Belfast Castle on Sunday 7th February. Here he explained some of background to his involvement with the PACE trial. He gave tribute to various patients, who he says, ". . . are teaching me a lot of what I am trying to teach others".
Read more about his talks . . .

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9 Kitchen Must-Haves for the Chronically Ill

Trying to find the time, energy and ability to prepare healthy foods can be a challenge to those with chronic illnesses. Odds are, if you have the strength to get to the grocery store, you won’t have the energy to make anything for dinner.
This has been one of the hardest struggles for me.
Through years of trying to make this process easier, I’ve found there are certain things I just can’t live without.

  •  My crock pot. 
  •  Freezer meals.
And 7 more ideas . . .

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Everyone needs a Coach in their corner!

I believe it takes a team to be able to fight fibromyalgia and its evil sidekicks. Each successful team has a great Coach who instructs or trains them in the fundamentals and directs strategy. I was blessed when I met Celeste Cooper. She became my teacher, my mentor and my friend.  Others have not been as lucky as me to have a Celeste to coach or advise them.
“When I was first diagnosed, I wish I would have had someone who understood Fibromyalgia. Someone that not only was living with Fibromyalgia but trained on how to help with the long list of questions I needed answered.”   Tami Stackelhouse
Find our about the FM coaching scheme. . .

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WHY DO I ACCEPT FIBROMYALGIA?

Some days I look down at my feet and wonder why?
We were once best friends and they supported me in everything I did but now they do their own thing. Since Fibromyalgia, they let me down.
Why be nasty?
Why be so painful day and night?
Why can I not walk for miles pushing a pram like I used to?
Why do I now have to plan every aspect of my life as over doing it means I have a flare?
What is the need for that?
[The questions go on]
I HATE FIBROMYALGIA SO MUCH.
If fibromyalgia was a person the best revenge is being happy, and so I accept it because of that.
Read more . . .

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For My Fibro Friends


You are requested to participate in a new video.  If you would like to take part contact salkeela@live.co.uk

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That brings us to the end of this week's eNEWS.  I hope the weather is being kinder to you now.  The temperature has risen a few degrees where I am.  But if you are in the southern hemisphere you are probably sweltering in unbearable heat!
Fondest wishes to all my readers
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.