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FMS eNews 25/01/14

Here's another mixed bag for you today. Information about food, supplementation, sleep, depression, awareness, justice - all the things we fibro fighters need to arm ourselves with.
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WORDz for the WEEK

 152.  'Using your head' is something we do when we are faced with a dilemma in life!!  What do the ones with no common sense to figure that out do?
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From Adrienne Dellwo

 A single vitamin may be able to improve fibromyalgia, chronic fatigue syndrome, autoimmune disease, and even cancer. See what it is, what new research is saying, and whether you're getting enough, below.
Also this week, an hypothesis that some depression is really undiagnosed ME/CFS, and what can cause chest and rib pain in fibromyalgia.
Down in Featured Articles, you'll find information on supplements that are frequently recommended for us.
Take care of yourself!

 http://specials.about.com/service/newsletters/chronicfatigue/3052dd8087000112260025fd.htm

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 7 Ways to Get Back to Sleep

 It's the middle of the night and you're wide awake. You need to be rested for your big day at work tomorrow. What can you do to get back to sleep?

 http://www.webmd.com/sleep-disorders/night-waking-insomnia-13/tips-for-better-sleep?ecd=wnl_slw_012314&ctr=wnl-slw-012314_ld-stry&mb=
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 Fibromyalgiaawareness.com 

 This blog is dedicated to provide information about Fibromyalgia, offer advice and raise awareness. The symptoms of the chronic condition include chronic pain, cognitive dysfunction, sleep disorders, stiffness, anxiety, hypersensitivity and much more.

 Hold My Hand Campaign 
If you haven't joined us, consider this our invitation and simply drop us a mail on contact@fibromyalgiaawareness.com with the subject line "I would like to join hands" and anything you would like to say.  We also invite you to like and share our Facebook page with over 3500 members: 
https://www.facebook.com/fibromyalgiaawarenesspage

 See more at: http://www.fibromyalgiaawareness.com/2014/01/hold-my-hand-campaign.html
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Message from Jeanne Hambleton, Chair FMSSES and Folly Pogs Fibro Research

 LATE NEWS  We are making a documentary about FM and the film crew will  be with us during the Fibromyalgia Conference  weekend. If you are coming to our residential event on March 28/31 2014 in Chichester, and if you are interested in being in the film please apply. Do share your interesting FM story with us. 
We would also like to hear from young folk with FM, fibromyalgic mums, share information about children with FM, and if a doctor has refused to diagnose you. If you want to be a STAR share your story as soon as possible with the film makers and the fibro team who will consider all applications. 

Please enclose your full name, email and postal address, your age group, tele. adding if you are group member of which group. Tell your friends.  Do get in touch with me, jeannehambleton@me.com, if you will be with us during our weekend and would like to be in the film.   If you want details of the conference please email jeanne@follypogsfibro.org for details. Hope to hear soon and to see you at conference.
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Fibromyalgia Public Meeting on Patient-Focused Drug Development

 On  March 26, 2014, FDA is conducting a public meeting on Patient-Focused Drug Development for fibromyalgia. FDA is interested in obtaining patient input on the impact of fibromyalgia on daily life and patients’ views on currently available therapies to treat the condition. This is a rescheduling of the original December 10, 2013 meeting.
Enrol for Webinar
http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm363203.htm
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The Prescription Charges Coalition

  is a group of 29 organisations campaigning to end unfair prescription charges for people with long-term medical conditions
http://www.prescriptionchargescoalition.org.uk/
Over 3,000 people have taken our e-action and written to their MP on the issue of Prescription Charges, if you have not yet done this, please click here

 http://www.prescriptionchargescoalition.org.uk/campaign-blog.html
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Change Agents: Ken Lassesen on Prescription and Herbal Antibiotics to Alter the Gut Flora in Chronic Fatigue Syndrome

 Changing the Gut Microflora in Chronic Fatigue Syndrome Not having the right bacteria was one problem; removing the bad bacteria that took their place was another My favorite conference paper is Faecal Microbial Growth Inhibition in Chronic Fatigue/Pain Patients because it identifies both undergrowth and overgrowth in a set of chronic fatigue syndrome patients.  I made a major assumption and assumed that it reflected my situation with CFS and proceeded logically to correct the imbalance.

 Read more:  http://www.cortjohnson.org/blog/2014/01/20/change-agents-ken-lassesen-prescription-herbal-antibiotics-change-gut-flora-chronic-fatigue-syndrome/
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Our latest report provides evidence about the size of privatisation within the NHS. The numbers tell a powerful story. £5bn worth of new NHS contracts have been advertised since April 2013 and of those awarded 70% have gone to the private sector. 

 http://us2.campaign-archive2.com/?u=5f72f778439e38b1d18a28495&id=1b08641ea2&e=49d061e6dd
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I'm currently working for Disability Awareness UK, a Chichester based charity who recruit and train volunteers with disabilities to give talks in schools to raise awareness. Full training and support is given to volunteers and the charity does not charge schools for this service, relying on donations instead.
I am currently recruiting in the Brighton and Crawley area and was hoping to set up an appointment to talk to disabled people about this voluntary opportunity. I have MS myself so understand some of the issues. You can visit their ebsite www.disabilityawarenessuk.org
Please feel free to give me a call on 07932 802782 to discuss this further.
Abigail Budd info@buddingcommunications.com

 (If you feel you would like to volunteer for this please contact Abi)
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Eat, Drink, and Live Longer! 
Some things about life—and how long we get to enjoy it—are out of our control. But emerging nutrition science research, as well as data collected from people in their 90s and beyond, shows what, when, and how we eat has a profound influence on how long we live. Want to eat for a long and healthy life?

 We're compiled the most compelling and surprising tips here!

 http://www.health.com/health/gallery/0,,20610379,00.html?xid=foodandnutrition01232014
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THE FUTURE OF NUTRITION CONFERENCE with Marc David, January 27 – 31, 2014

 Welcome to the world’s biggest online nutrition event! Created and sponsored by the Institute for the Psychology of Eating, the Future of Nutrition Conference is a gathering of some of the most insightful and cutting edge thought leaders. Get ready for some powerful content and daring ideas that are designed to take us into a positive nutritional future. We trust you’ll enjoy these creative interviews and find plenty of inspired strategies and breakthrough information for your own metabolic journey.

 http://futureofnutritionconference.com/conference/future-of-nutrition/
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Could Your Aches & Pains be Caused/Accelerated by "Glue" in Your Gut?

 After working with hundreds of clients with inflammatory disorders specifically fibromyalgia, Scleroderma, arthritis, IBS, Crohn’s, etc., to name a few, I’m amazed they are not better informed as to the health-depleting consequences of eating wheat/gluten products. I’ve written extensively about the inflammation-inducing affects of consuming foods in the nightshade genre, but gluten can cause just as many aches and pains from the inflammation they induce.

 http://www.yourhealthdetective.com/2014/01/index.html  includes other articles
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I Learned

 [dog]  When I got sick in 2005 my doctor insisted was there was nothing wrong with me. Seeking a second, third, fourth and fifth opinion didn't change my non-diagnosis, despite my worsening health. After a ridiculous breakdown I was finally given two diagnoses of exclusion, Chronic Fatigue Syndrome and Fibromyalgia. Little good it did, however, because I was told there was no way to treat those illnesses. Once again I was sent home with a patronizing pat on the head, except for this time it included the terrible advice to learn to live with something that was in the process of ripping my life apart. I guess it was progress, but it sure didn't feel like it.

 Read on:-  http://chroniclesoffibro.blogspot.com.au
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Daily Newsletter, Jan. 18th, 2013

Daily Newsletter, Jan. 19th, 2013

Daily Newsletter, Jan. 20th, 2013

Daily Newsletter, Jan. 21st, 2013

Weekly Newsletter, Jan. 22nd, 2013

Daily Newsletter, Jan. 23rd, 2013

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 According to Bing Weather, in my area there should be sunny periods today, but more rain tomorrow.  Both remain to be seen!
Whatever the weather, I hope you will find some way to feeling less pain, even if not being painless.

 Best of wishes to all
Stella
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 N.B. 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.

Posted by

FMS eNews 18/01/14

Panic over, over my laptop! All caused by a faulty wire. All now restored to normal usage, I am pleased to say.  Such a little thing, but a correct diagnosis was needed.
 1. It takes the right person to make the diagnosis.  (In this case it was my granddaughter's fiance.)
 2. The right treatment prescribed. (Replace faulty wire)
 3. Acquire remedy.  (Steal wire from CD player!)
 4. Recovery complete. (When wire plugged in.)
 If only it were so simple with fibromyalgia!  One day maybe?
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WORDz for the WEEK

 151.  Take the chance while you still have the choice.
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 From Adrienne Dellwo

 Do crowded places overwhelm you? How about a loud beep or bright lights? Sensory overload is a symptom many of us share. See what we know about it and how you can manage it, below.
Also this week, a look at sore feet in fibromyalgia, and the posts from 2013 that got the most attention. And it's not too late to tell me what you're looking for in your newsletter for the next year - take the poll and leave your comments!
Down in Featured Articles, I've included some articles that can help you reach your goals for 2014, including setting achievable goals, making decisions, and taking control of your life.
Take care of yourself, and Happy New Year!

 http://specials.about.com/service/newsletters/chronicfatigue/3052c1d1050001ee760025ec.htm
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From Adrienne Dellwo

Okay, yes - those of us with fibromyalgia hurt all over. But where are the most common places? And how do we compare to people with other pain conditions? Find out, and take the poll, below.
Also this week, gender differences are revealed in a couple of studies - one looking at fibromyalgia and sleep, and the other comparing ME/CFS to Gulf War illness.
Down in Featured Articles, you'll find some information on alternative treatments.
Take care of yourself!
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5th National Fibromyalgia Conference

 Are you fibromyalgic?  Have you heard about our fibromyalgia conferences? The next one is soon sand we would love to meet you.  We have so much to share to hopefully make your life easier.
We have knocked £75 off the price  saving £150 on a double booking, and we  will start a day later. We are back to last year's prices. We also have a scheme where you can come now and pay it later. We think this is the best line up of speakers we have had - wall to wall speakers. The keynote speaker being Professor Andrew Holman.

 Please read our News Flash!
https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/14.01.18_5thFibConNEWSFLASH.doc

 Booking Form here
https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/14.01.18_5thFibCon_BKG_FORM.doc
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Fibromyalgia & Pregnancy Study:   Volunteer participants are required to take part in a study on fibromyalgia and pregnancy  

This research project aims to explore the subjective experiences of women with fibromyalgia within the context of transition to motherhood.
We are looking for women diagnosed with fibromyalgia who are reaching their third trimester of pregnancies or have completed their pregnancies no more than 2 years ago, to participate in an interview and share their personal experiences on how is like living with this condition during pregnancy.
The individual interview will take up to an hour and will be held at a convenient time and place for you. Specifically, you may wish to meet the investigator in a quiet location near your workplace or where you live, or even at your domicile, so that no travel will be required from you. Skype or phone interviews will be  also considered when a face-to-face interview may not be possible.
This study is carried out by Ana Tunaru, a postgraduate student in Health Psychology at the University of Surrey, Guildford, and is supervised by Professor Mark Cropley who has extensively researched fibromyalgia syndrome.
In order to take part:
1.       You must have been diagnosed with fibromyalgia at least 2 years prior to the onset of your pregnancy;
2.       You should be approaching your third trimester of pregnancy or gave birth to a child no more than 2 years ago;
3.       You should live in the UK and speak English fluently.

 If you meet the above mentioned criteria and are interested to join this study or need further information, please don't hesitate to contact Ana Tunaru by email: at00208@surrey.co.uk or by phone  0750 36 54 920.  Thank you in advance for your interest!
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Pain Alliance Europe Petition: 

 Pain Alliance Europe has placed a petition on line to improve the situation for all chronic pain patients in Europe.  We would encourage you all to sign this so that pain gets the recognition it deserves throughout Europe, enabling greater funding for research and professional education.

 http://www.pae-eu.eu/?page_id=575
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Bringing Order to Chaos; Health Rising's FibroMapp App For Better Health

 Doesn't trying to get better seem like it's all too much at times? There are meds and supplements, activity levels, sleep, self-care, food, maybe meditation/mindfulness activities, naps, exercise to consider.
A husband (developer) and wife (person with fibromyalgia) team just developed an Android/Google app that can take much of the guesswork out of figuring out what's affecting your health.
The FibroMapp, branded for Health Rising, has 8 apps you can use to figure what's working and what you want to cut out.

 Find this and many other fibro related articles here
http://mad.ly/5b44a3?pact=19533180488&fe=1
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 And here are even more
Moving Targets: Fibromyalgia and Chronic Fatigue Syndrome Over Time

 We think we 'have'something called fibromyalgia or ME/CFS, but what if these disorders change over time? What if the ME/CFS or FM you had five years ago is not the FM or ME/CFS you have now?
Some research is beginning to suggest these disorders change over time, and that may have implications for treatment.

 http://mad.ly/5b44a3?pact=19707053809&fe=1
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A New Approach To Talking About and Finding Answers to ME/CFS and FM: HealClick Debuts
My experience with most ME/CFS projects (including my own) is that they’re usually done in a kind of ad-hoc, seat-of-the-pants manner, but HealClick is a horse of a different color.  Long-time ME/CFS patient Joey Tuan had a vision, enrolled developers in it, and ultimately put together a team whose professionalism is evident in the site. HealClick provides a Forum/Facebook like experience with a matching symptom program that might just help you find something that works. HealClick is one of the most interesting and potentially helpful patient-oriented online project that I’ve seen to date.  Think of it as a Forums, Facebook, and PatientsLikeME type site smushed together.

 Read more:  http://www.cortjohnson.org/blog/2014/01/15/new-approach-talking-finding-answers-mecfs-fm-healclick-debuts/
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Find HealClick here

 See Cort's recommendation above.

 http://www.healclick.com/
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Disease Basics 101: A world of misdiagnosis

 So, what did the doctor say? Is it a disease, a disorder or a syndrome? Is it a neurochemical or neurobiological imbalance? Could you have a cognitive dysfunction or impairment? Are your problems genetic or can you not inherit bad eating habits? Do you have central sensitization syndrome? Maybe what you have is "comorbidity," meaning it's a host of disorders on top of other disorders on top of a syndrome, which could be muscular, psychiatric or stress-related. Maybe it's all just an anomaly and your doctor has no clue about the causes.

 Learn more: http://www.naturalnews.com/043496_disease_misdiagnosis_inflammation_GMOs.html
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UK bread and cereal bars found to be contaminated with glyphosate

UK news site The Ecologist featured a study performed by a British anti-GMO group called GM Freeze. Two major food brands contained traces of glyphosate. The research disclosed that all four cereal bars produced by Jordans and 34 out of 40 bread products sampled from Walburtons contained traces of glyhosate. These are both big name brands in the UK.

 Learn more: http://www.naturalnews.com/043499_glyphosate_contamination_cereal_bars.html
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 FMSSES Newsletter, January 2014

 Welcome to the New Year and new horizons. Hope everyone had a good Christmas and you are all looking forward to a bright future in 2014.
For our charity (formerly FMS SAS Fibromyalgia Support Surrey and Sussex) the future is exciting. At our AGM it was unanimously agreed to extend the horizons to include our friends outside our stated boundaries. So with the Charity Commission’s blessing this will also include any new friends we make along the way.
Read the rest of the news here
https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/FMSSES_Newsletter-14.01.pdf
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South Bucks Newsletter, January 2014

 Happy New Year to everyone! Hope you enjoyed the festive season and were able to rest in between the rushing around, and it was as pain and fatigue free as possible.

 https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/South_Bucks_Newsletter_14.01.pdf
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15 January 2014 newsletter

 Could claimants choose the next government?
Yes they could.  We’ve done the research and there are more than enough working age claimants in marginal constituencies to make it entirely feasible.
The real question is whether claimants are so appalled by the current administration that they will turn out in large numbers to vote – or so disgusted by all politicians that they will stay at home.  Leave a comment to tell us what you think you will do.

 Read more
http://www.benefitsandwork.co.uk/news/2543-15-january-2014-draft-newsletter
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Weekly Newsletter, Jan. 10th, 2013

Weekly Newsletter, Jan. 13th, 2013

Daily Newsletter, Jan. 14th, 2013

Daily Newsletter, Jan. 15th, 2013

Daily Newsletter, Jan. 17th, 2013
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 Well, that turned out to be quite a bumper bundle this week.  I hope you found some of it useful.  There are some gems there.
Fondest wishes 
Stella

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 N.B. 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.

Posted by

FMS eNews 11/01/14

As I was about to upload this week's eNews my laptop stopped working.  Unfortunately I had not saved all my copy on Dropbox.  I managed  to reassemble some of the items but it is not as comprehensive as I would have liked it to have been.  I am now working on my desk PC which does my back no favours!
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WORDz for the WEEK

 150.  You'll only say life is not worth living because you don't have 'the right' shoes once ..... until you see someone with no feet.
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From Adrienne Dellwo

 Most of us have heard a slew of thoughtless, hurtful, inaccurate comments about our illness(es.) Is there a way to make them stop? Get some ideas for what we can all do, below.
Also this week, a few things you might like to know about food and  your symptoms, and a look at your feedback about what you'd like more of in 2014.
Information about some of our symptoms and how to deal with them is down in Featured Articles.

 http://specials.about.com/service/newsletters/chronicfatigue/3052cb0b85000113f80025fb.htm

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 Fibromyalgia Pain

 Whether you are experiencing painful tender points, deep muscle pain, chronic headaches, unending back pain, or neck pain, you know how fibromyalgia feels. People with fibromyalgia experience pain in ways no one else can really understand.  But what is pain? What causes it? Is fibromyalgia pain acute (short term) or chronic (long term)? And what impact does fibromyalgia pain have on every part of your life?

 http://www.webmd.com/fibromyalgia/guide/fibromyalgia-pain?ecd=wnl_fib_010714&ctr=wnl-fib-010714_ld-stry&mb=
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 11 Tips for Living With Chronic Pain

 1. Learn deep breathing or meditation to help with chronic pain.
Deep breathing and meditation are techniques that help your body relax, which eases pain. Tension and tightness seep from muscles as they receive a quiet message to relax.

 Read this and 10 more here
http://www.webmd.com/pain-management/guide/11-tips-for-living-with-chronic-pain?ecd=wnl_cbp_010714&ctr=wnl-cbp-010714_ld-stry&mb=
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 Life is Not Fair, But Can You Still be Happy? by Rebecca Richmond

 My clients often say things like "I wish I had your life; I wish I was you" and whilst I can understand this, because I have a great life and don't know anyone happier than me, I do have to question them on their logic.
• Would they really want to work with people as I do?
• Is public speaking something they would really enjoy?
• Despite being very healthy, I am constantly monitored to ensure my tumors don't return, would they really
want this invasive monitoring?
In reality, what they really mean is they wish they could be as happy as I am ... and that is entirely achievable
because how happy we are is directly related to the things we think about.

 https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/Forget_Fibro-14.01.11.pdf
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 Will Leading Technology Help us With Chronic Illness? 

 I just watched a youtube video about Watson.  Some of you may recognize this computer as the one that played the game Jeopardy on television.  It has been designed to have cognitive computing intelligence.  The video I watched, What will you do with Watson, got me thinking about technology and medicine.  In a partnership between MSK (Memorial Sloan Kettering) and IBM, they'll be using Watson in the fight against Cancer. After watching a few videos, I began to have contrasting feelings around the concept of Watson assisting with patients.  Posing the question, what would I do with Watson, I immediately went to my experience with Fibromyalgia.......

 http://seekingthegiftsoffibromyalgia.blogspot.com.au/
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Oh What a Pain in the… 
A humorous, no holds barred look at life with physical and emotional pain. 

Several months ago I made the conscious decision to cut back on the narcotics I was taking to control my chronic pain.  For two and a half years I have been prescribed a variety of medications, including narcotic to control my pain.  I made this decision, on my own, for various reasons, most of them financial (being that I won’t be able to afford pain management and prescriptions following my divorce next month), but also because I realized that the medication was no longer very effective in treating my pain. When a pain management appointment a few months ago led to discussions about increased dosages and very strong medications, I realized that at age 34, I was heading down a slippery slope.  If my pain was not being controlled now, what would happen if my much degenerated spine were to need another surgery requiring pain medication in later years?  The answer: I would be out of options.


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Daily Newsletter, Jan. 3rd, 2013

Daily Newsletter, Jan. 6th, 2013

Weekly Newsletter, Jan. 7th, 2013

Daily Newsletter, Jan. 9th, 2013
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Here's hoping my rescue operation has proved to be adequate for you.  If I get my laptop working again I might be able to put any escaped items into next week's offering.  I hope you are progressing well with your New Year's resolutions.
Kindest regards
Stella
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 N.B.  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.
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