Saturday 28 May 2011

FMSSAS eNews 11.05.28


Hi there
I would like to thank all those of you who have sent me messages of encouragement, appreciation, and goodwill, and even birthday wishes especially on Facebook!  I am now walking with a stick – and no splint.   Progress is slow but sure.  I greatly value your support.
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WORDz FOR THE WEEK
21.  The two hardest things to say in life are ‘Hello’ for the first time and ‘Goodbye’ for the last.
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Bracklesham Bay Fibromyalgia Conference – 8-11 April 2011
Report by Kelly Thompson
Press Release by Jeanne Hambleton
Photos of the Conference – 1 The Fibro Duck Competition by Rebecca Toogood
Photos of the Conference – 2 General Pictures by Rebecca Toogood
Photos of the Conference – 3 Miscellaneous Photos
If anyone else has photos or opinions I can add to the website please send them to me at webmistress@fms-sas.co.uk
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University of Maryland Medical Center
Article about Fibromyalgia including treatment options.
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Fibromyalgia Medication
There is no cure for fibromyalgia, but medication aims to ease your symptoms as much as possible and to improve your quality of life.
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Brain Fog & Sleeping Brains in Fibromyalgia & Chronic Fatigue Syndrome
Has brain fog ever made you feel like your brain just "shut off" or "went to sleep" for a bit? New research on sleep-deprived brains suggests that could be exactly what's happening.
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Managing Fibromyalgia by Pati Chandler
The Natural Approach
Everyone's Fibromyalgia is different, and no one treatment is going to work for everyone.  But there is a huge plethora of options out there that really and truly do help.  It became one of my missions in life to share these possibilities with all Fibromyalgia sufferers.
 Stress & Body-Pain      Part 1
 Stress. That's a scarey word for anybody. Over the years we have learned what stress can do to a body. And for those of us with Fibro, or any chronic illness for that matter, stress has many different meanings, and they all spell P.A.I.N.  Stress= Put It Away Now.
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Chronic fatigue, fibromyalgia cause 'bone-crushing fatigue,' pain for many
“The days are dotted with medications and supplements. To keep her awake. To keep her asleep. To keep her comfortable.  It is a constant struggle to maintain even a sliver of normalcy.”
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"Reframing: Combining Acceptance & Hope"
"Living successfully with CFS or FM requires not only changing what we do but also how we think. Without adjusting how I thought about myself, I would never have developed the approach that led to my recovery."
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Abstracts
Exploring attentional disruption in fibromyalgia using the attentional blink
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JZP-6 Sodium Oxybate
Clinical trials on FMS have shown that the drug can significantly improve sleep quality and reduce pain.
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Your Health Detective – May 2011
Magnesium Deficiency Linked to Chronic Disorders (including fibromyalgia)
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Enjoy the bank holiday weekend.  Here’s hoping the sun shines.
Stella

N.B. I would like to point out to you all that the information in my eNewsletters does not necessarily infer endorsement by the charity Fibromyalgia Support for Surrey & Sussex.   Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional. The charity cannot be held responsible for omissions and/or errors.
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.
I also include various awareness and local issues as well as general health considerations.

Sunday 22 May 2011

FMSSAS eNews 11.05.21


Hello Everyone

It has been so good to be home this week, to be reunited with family, to welcome friends to my home, to have constant internet access and to progress with mobility.  I look forward to dispensing with the leg splint and walking aids.
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WORDz FOR THE WEEK
I wasn’t very ‘with it’ last week!! Apologies for errors!!!
18.   (Should have been-)  You don’t stop playing because you are old; you grow old because you stop playing.
19.  (Should have been-)  If you are going to walk on thin ice, you might as well dance!
20.  I am the author of my life.  Unfortunately I’m writing in pen and I can’t erase my mistakes . . . so >>> Create a “Best Seller!”
I was sad to discover that Donnie Kuhn who assembled all these sayings and published the book WORDs FOR THE DAY, died last week on May 11th, aged 45. 
Donnie was diagnosed with severe congenital emphysema about five years ago and recently underwent lung volume reduction surgery.  He was known for his frequent visits, in his wheelchair, to the roadside near his house where he smiled and waved at passing motorists and was a great inspiration to them.  His WORDz have been a great inspiration to me and it is why I am sharing them with you.  Should you wish to purchase the book it is available from http://www.wordclay.com/BookStore/BookStoreSearchResults.aspx?SearchType=smpl&SearchTerm=Wordz+for+the+Day
Donnie said of himself  and his book “I am a 41 year old husband & father of three that did the only thing that I could possibly do (in my mind) after receiving a diagnosis of death; {Yes, that not breathing, grave yard dead type of aliment you don’t recover from.}  I started trying to think ‘happy’ thoughts, ‘dancing in the rain if you will’. At first I mainly just got wet.. But I soon after actually began enjoying life and ANYTHING it could throw at me. What you will read within the ‘covers’ I hope can bring a smile to your face (it hasn’t failed yet.) It has brought me from the dark yucky place I was in to where everyone who knows me will tell you. I am truly and genuinely a very happy man. ( FYI..  My diagnosis is Severe Congenital Emphysema with 26% (of 100%) Lung Capacity) My Pulmonollogist (lung Doctor) told me in OCT of 07' that within two years I have a 50% chance of being dead; unless I get sick too many times between now and then, "then he said, it would be sooner."  I'm just someone who would love to help anyone that I have been given the opportunity to reach; to make a glowing smile that radiates pure happiness out of those yucky frowns.”
He outlived the doctor’s prognosis and gave pleasure to many people.
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The Faces of Fibromyalgia
 A recent survey of people living with diagnosed or undiagnosed fibromyalgia or another chronic pain condition revealed the significant impact of pain on daily activities including work, personal relationships and pivotal life decisions.
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Audios & Videos for Download
For £10 Life Membership you are offered limitless hypnosis Audios & Videos available on this website.
Covers Relaxation, Chronic Pain Relief, Insomnia etc.
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Special one-day workshops
The Challenge of Pain – 10th June – see flyer www.fms-sas.co.uk/docs/PainDay110610.doc
Workshop for sufferers of Fibromyalgia - 24th June – see flyer www.fms-sas.co.uk/docs/FibroDay110624.doc
Both at The Hilton Hotel, Avisford Park Near Arundel, West Sussex 10.30am – 4.30pm, £85 per person to include all refreshments and lunch with Sue-Ellen Nicholls and Nicky Stoddard.
Please note the hotel is offering special overnight rates for anyone attending one of the workshops.
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What are you affirming to yourself?
Rebecca Richmond says “Affirmations are positive statements that describe a desired situation, and which are repeated many times, in order to trigger the unconscious mind into action to achieve a positive outcome.”
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Genetic link for depression found
“Scientists have for the first time established a genetic cause for depression narrowing it down to a specific chromosome,”
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“Thankful” By Oprah Winfrey
An inspirational article.
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East Sussex LINk – Newsletter May 2011
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West Sussex LINk – Newsletter May 2011
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THE VULNERABLE MANIFESTO
Society continues to poison me with its toxins;
this cruel, unjust society that is so comfortable in its greediness.
Society rejects me for not producing and not consuming as those with healthier bodies do,
while the owners of the toxic industries mock me and get richer. . . . . .
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FibroCenter
Fibromyalgia Community Guide - The Faces of Fibromyalgia
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I hope I haven’t made too many mistakes this week!  My intentions are good.  My capabilities might be a little askew at present.  Your understanding is sought!!
Best wishes to you all
Stella

N.B. I would like to point out to you all that the information in my eNewsletters does not necessarily infer endorsement by the charity Fibromyalgia Support for Surrey & Sussex.   Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional. The charity cannot be held responsible for omissions and/or errors.
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.
I also include various awareness and local issues as well as general health considerations.

Sunday 15 May 2011

FMSSAS eNews 11.05.14


Hi fibro folks

When I was admitted to hospital on 7th April I never dreamt I would be there for over five weeks!  I am so sorry that I have not been able to produce eNews during this time.  I am indebted to Kelly Thompson who has accumulated a number of articles for you which are included in this issue.  I hope I will be able to do some research for you next week.  I felt very deprived with no wifi connection but intend to make up for it now I am home where I arrived by ambulance at 11pm yesterday!
Thank you to those of you who sent messages to me through the fmssas2@gmail.com  address.  I was not able to view them until today but I do appreciate your concern and best wishes.  My leg is in a brace, walking limited but aided by a zimmer frame, I have my bed downstairs and have caused chaos with household organisation!  Hopefully all will be well – eventually.
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WORDz FOR THE WEEK
Here are the WORDz for the missing weeks.
15.  If today was perfect there would be no need for tomorrow.
16.  Life isn’t about waiting for the storm to pass . . . it’s learning ro dance in the rain.
17.  You are only young once but you can be immature for ever.
18.  You don’t stop playing because you are old; you grow old because you stop growing,
19.  If you are going to dance on thin ice, you might as well dance.
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D-Ribose for fibromyalgia?
Supporters of D-Ribose claim it decreases pain, improves mental clarity, increases energy, improves stamina, creates an improved sense of well-being, and strengthens heart performance. Uses for D-Ribose range from folks with chronic fatigue syndrome or fibromyalgia to athletes looking to improve their exercise endurance. It may also be helpful, in theory, to those who experience muscle aches and pains as a side effect of cholesterol-lowering statin drugs.  Read more here:-
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From CFIDS Self Help Library
"Lifting the Fog"
Strategies for controlling brain fog
http://www.cfidsselfhelp.org/library/lifting-fog-treating-cognitive-problems
"Taming Stressful Thoughts"
The three step process for making your self-talk more realistic and more
positive.
http://www.cfidsselfhelp.org/library/taming-stressful-thoughts-making-thoughts-work-for-you
"Pacing By Numbers: Using Your Heart Rate to Stay Inside the Energy Envelope"
How to control symptoms using a heart rate monitor.
http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope
"Dr. Lapp's Recommendations on Supplements"
The supplements that pass the three tests of this prominent CFS/FM physician.
“The Healing Power of Gratitute”
"Problem Solving"
A three-step process for addressing issues in your life. (Third in a series on self-management skills.)
http://www.cfidsselfhelp.org/library/problem-solving
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CoCure Articles
“Distinguishing fibromyalgia from rheumatoid arthritis”
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1104c&L=co-cure&T=0&P=1837

“Quantitative Sensory Testing Profiles in Chronic Back Pain Are
Distinct From Those in Fibromyalgia.”
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1104c&L=co-cure&T=0&P=3293

“Coenzyme Q(10): A novel therapeutic approach for Fibromyalgia? Case series with 5 patients.”
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1104d&L=co-cure&T=0&P=518

“Multisensory hypersensitivity in women with fibromyalgia: implications for well being and intervention.”
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Pain Support Newsletter
Getting the Best from Medical Consultations
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Worthing Fibro News for May
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New Support Group in Bracklesham
Teresa White has started another Support Group meeting on 2nd Monday in every month, 2-4pm, at Bracklesham Barn, Beech Ave. Bracklesham Bay in Community Room 2.  Contact Teresa for details 0844 567 2879.  She already runs a successful group at Selsey.  So if you live at the south west end of West Sussex there are ample opportunities to attend meetings,
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NFA on Fibromyalgia Awareness Day
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I hope this isn’t information overload!  It’s just so good to be in communication with you all again.

Stella

N.B. I would like to point out to you all that the information in my eNewsletters does not necessarily infer endorsement by the charity Fibromyalgia Support for Surrey & Sussex.   Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional. The charity cannot be held responsible for omissions and/or errors.
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.
I also include various awareness and local issues as well as general health considerations.

FMSSAS eNews 11.04.11


Hi there

I am finishing this message at the beginning!  Having promised eNews on Friday, before leaving for the fibromyalgia conference, I failed you.  I am sorry.  I am also sorry I had to miss the conference.  I am finishing this in hospital following a fall as well as dislocating my prosthetic hip (two unrelated events!) 
I hope that you are following up the links that I give you in eNews!  You need to left mouse click, or double click, or even hold Control and click, - depending on how your computer is set up.  If all those fail, copy and paste into your web browser’s address bar.  What I give you is skeletal!  You need to flesh it out from the pages I have linked to to get the benefit.  If something looks particularly useful add it as a Favorite/Bookmark it, or even save it to your computer.  Then you can find it again when you want it.
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WORDz FOR THE WEEK
14.  What seems like the right thing to do could also be the hardest thing you have ever done in your life.
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Worthing Fibro News – April
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Aids to Pacing, Part 2
In addition to having personal rules and guidelines (see first article), you can use timers, pedometers and other devices to improve your success in pacing.
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The Power of P.R.I.D.E.
Pacing, Rest, Informing, Delegating, and Enjoyment,  five pointers to managing your life.
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$2-million program targets chronic diseases  By Pamela Fayerman, Vancouver Sun - March 31, 2011
After the release of reports this week showing flaws in the diagnosis and treatment of Lyme disease patients, the provincial government has announced a $2-million program to help complex chronic disease patients such as those with Lyme disease (and FM & CFS).
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ME/CFS /FM: What It Is and What It Is Not.
Saturday 14th May 2pm.  Talk by Professor Kevin Davies (Honorary Consultant Physician and Rheumatologist) from Brighton and Sussex Medical School.   The venue is The Sheldrake Suit, The Martlets Hall, Civic Way, Burgess Hill, West Sussex. RH15 9NN.
 Tickets £3 to include refreshments and entry is by ticket only. Please contact reMEmber for more details and tickets, and send a Stamped Addressed Envelope with your cheque.
 reMEmber
(The Chronic Fatigue Society), PO Box No 1647, Hassocks, West Sussex. BN6 9GQ
Tel 01273 831733 
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Who Else Wants More Energy, Less Pain While Improving Sleep and Eliminating Brain Fog? 
Join Us for TWO FREE Tele-seminars and Learn…
6 Simple Steps to Help You Decrease Pain, Increase Energy, Improve Your Sleep, and Reduce *Fibromyalgia Symptoms*
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So, that’s it for now.
Take care, which is what I should have done!!

Stella

N.B. I would like to point out to you all that the information in my eNewsletters does not necessarily infer endorsement by the charity Fibromyalgia Support for Surrey & Sussex.   Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional. The charity cannot be held responsible for omissions and/or errors.
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.
I also include various awareness and local issues as well as general health considerations.