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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.


2 comments:

  1. Hi Stella!
    Thank you SO VERY MUCH for featuring all of us this week! It's always a great pleasure and honor to meet my fellow 'Spoonie' writers! Hope you're having a truly WONDERFUL day ~ Wishing you grace, beauty, and a soft place to land :)

    ReplyDelete
  2. Thanks Kristine
    I have signed up for YOUR newsletters, so will no doubt be promoting you again.

    ReplyDelete