Hello – and welcome to the
new subscribers who were at the Fibromyalgia Conference at Chichester last
weekend.
I had started this eNews
before I left for Fibcon. I have added
some feedback from the conference since, which I hope will be useful whether or
not you attended the event.
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WORDz FOR THE WEEK
117.
Reality isn’t the way you wish things to be, nor the way they appear to
be, but the way they actually are.
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Tried and Tested Group
Report on a treatment that seems to be helping…..
Karen is a founder member
of Tried and Tested and has had Fibromyalgia for over 20 years. Tried and
Tested was started in 2007 to develop a more targeted way of spending our FM
healing pound. Probably like you our members had wasted ££££ on things that did
not help or made them worse! Members of the group are based in Surrey and
Sussex.
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Jean Luc Lafitte KST Chiropractic
There
are various forms of Chiropractic adjustment, and just as a skilled mechanic
uses different tools from his tool box to fix a car, I use diversified Chiropractic
adjustment techniques, because no two patients are the same, and in my opinion
no two adjustments can be the same.
The
two techniques I use the most are called McTimoney Corley and KST (Koren
Specific Technique) the advantage of this is that with McTimoney Corley and KST
technique some of the spinal corrections can be done sitting or standing.
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Fibro Thunderclap
Did you join in?
If not, upload this header to your Facebook and Twitter pages NOW. Keep it there for the month of May.
Thanks
I think a purpled Niagara Falls for Fibromyalgia Awareness
is a must see. Looking forward to
photographs.
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New research: Eat grapes to reduce
body-wide inflammation and organ
damage
Thursday, April 25, 2013
by: Sherry Baker, Health Sciences Editor
|
Research just presented at the Experimental Biology conference held in
Boston this week reveals that grapes contain powerful health promoting
properties. Specifically, natural components known as polyphenols appear to
protect against organ damage associated with the progression of metabolic
syndrome - a group of conditions that occurs together and includes high blood pressure,
abdominal fat and elevated cholesterol levels.
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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.
View the other 10.
|
Is your pain interfering with
the good things
in life? 11 ways to put pain in its place. Read Article › |
|
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PatientsLikeMe Newsletter Issue 28 - April
2013
Stress. How do you handle it?
Many of us know that stress is
harmful for both our physical and mental health, but it's a product of the
culture we live in and the expectations we have for ourselves. The question is
not, are you experiencing stress, but how do you handle it?
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Fibromyalgia Conference, Chichester, 26th - 29th April 2013
The Conference was attended by 140 delegates from all over the UK as
well as from other countries. There was
a packed programme of speakers and other activities, so never a dull
moment. I found the conference very tiring and have
spent much of this week asleep! Next
year’s conference is being planned to last even longer.
I will work through the
programme and give you links and brief info about each item.
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Friday 3.15 – 5pm, Benefits Forum with John
Stevens & Wes Wright
John and Wes who deal with
both debt and benefits and offer advice on both gave a presentation explaining
the changes in the UK Benefits System, both PIP (Personal Independence
Payments) and ESA (Employment and Support Allowance). Universal Credit is replacing the multitude
of previous allowances. They are based
in West Sussex but there are branches in surrounding counties.
Their website is http://www.frontlinedebtadvice.org.uk
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The Fibro Element
One thing that was made
clear throughout the conference is that Fibro
Is Real. This was a common denominator. Speakers differed in their advice for
treatment but all agreed it is a personal thing and each fibro sufferer/fighter/survivor
has to find their own way through the maze!
Much advice was given to help this to be accomplished. I took copious notes of all lectures, but
this is not the place to report in full.
Here, I am linking you to the various websites given in the conference
programme (ans some others) which will make it easier for you to find them as you won’t have to type
out each URL. I have done it for you! Just click on each link.
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Saturday 9am,
Dr Kevin White - ‘Fibromyalgia - Bridging the Gap between Myth and Reality’
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| Dr Kevin White |
Author of the award winning book, ‘Breaking
Thru the Fibro Fog’ Dr Kevin is a knowledgeable and humorous speaker and
writer, as well as being an accomplished musician, songwriter, performer – and dancer!
Much of Dr Kevin’s
philosophy can be found on his website http://www.thefibrofog.com/ There are many videos available on the home
page of the website which contain much of what he said at the conference.
One contains the limerick
he delivered at the entertainment evening.
I promised to repeat it in eNews.
“There once was a woman with fibro
Whose doctor just laughed when she said so.
‘The good news’ he said ‘is it’s all in your head’
Now all they can find is his torso.”
Such might be the reaction
to doctors who refuse to acknowledge fibro.
His book is available from
his website or from Amazon http://www.amazon.co.uk/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Breaking+Thru+the+Fibro+Fog%2C+Kevin+White
as a paperback or Kindle
edition.
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10am, Dr Kim Lawson ‘Are FM & CFS, a
Single Condition?’ (No photo
available)
Kim has done much research
into Fibromyalgia. In his talk he
compared and contrasted the two conditions.
Other works of his can be found here on the Sheffield Hallam University
site.
See also:- Beard, S.M., Le
T.K., Zhao, Y., Coleman, A., Ang, D., Roskell, N., and Lawson, K., (2011) Cost-effectiveness of duloxetine in the
treatment of fibromyalgia. J Med Econ. 14(4), 463-476
Lawson, K. (2009) Pregabalin and fibromyalgia syndrome: a
treatment option. Clin. Med: Ther., 1, 809-824.
Lawson, K., Shawcross, E.
and Raphael, J.H. (2008) Function of
potassium channels in blood mononuclear cells of patients with fibromyalgia.
J. Pain Manage., 1(3), 289-294.
Lawson, K. (2008) Treatment Options and Patient Perspectives
in the Management of Fibromyalgia: Future Trends. Neuropsych. Dis.Treat.,
4(6), 1-14.
Lawson, K. (2008) Pharmacological Treatments of Fibromyalgia:
Do Complex Conditions Need Complex Therapies? Drug Disc. Today., 13,
333-340.
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11.15am, Prof Kevin Davies - ‘Overlap of FM &
SLE Sjogren’s and other ‘inflammatory’ diseases.’ (including Lupus)
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| Prof Kevin Davies |
Another set of overlapping conditions! Unlike fibro, diagnoses are more easily made.
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12.15pm, Claudia Marek – ‘The Guaiffensin
Protocol’.
Dr. St. Amand, the originator
of the protocol claims that the drug guaifenesin can treat fibromyalgia
symptoms by removing excess phosphate from the body, which he believes to be
the cause of fibromyalgia. This involves
taking guaifenesin, and also avoiding products that contain salicylates. Dr. St. Amand and Claudia have co-operated in
writing 3 books and she has written some on her own – about fibromyalgia.
www.fibromyalgiatreatment.com
(temporarily unavailable)
This is what Wikededia
says about it http://en.wikipedia.org/wiki/Guaifenesin_protocol
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2pm , Dr Patrick Wood’s film Fibromyalgia: New Insights, New Hopes
was shown.
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| Dr Patrick Wood |
Here are the links to it on YouTube
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3.15pm, Veronica Pettifer – Neck &
Shoulder Massage (No photo
available)
Veronica led the group in
exercises sitting at a table; self massaging arms, head, shoulders and neck
with breathing exercises.
Ronnie’s website is http://towardsbalance.co.uk/
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4.15pm, Dr Clare Morrison – ‘Oxalate – the Hidden
Poison.’
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| Dr Clare Morrison |
The advice she gives was to avoid all foods containing oxalates (which
includes most fruit and vegetables) and eat plenty of white flour products/carbohydrates. Quite contrary to much other advice but she
says it worked for her.
You can read her articles
here
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I will deal with Sunday’s
events next week.
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April 26th, 2013
Newsletter
April 28th, 2013
Newsletter
April
30th, 2013 Newsletter
May
1st, 2013 Newsletter
May
2nd, 2013 Newsletter
May
3rd, 2013 Newsletter
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The Mystery of Pain
Pain has an element of blank;
It cannot recollect
When it began, or if there were
A day when it was not.
It has no future but itself,
Its infinite realms contain
Its past, enlightened to perceive
New periods of pain.
It cannot recollect
When it began, or if there were
A day when it was not.
It has no future but itself,
Its infinite realms contain
Its past, enlightened to perceive
New periods of pain.
Emily Dickinson
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Have a great Bank Holiday
weekend.
Best of wishes
Stella
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Contact me:- fmsstella@gmail.com
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N.B. I would
like to point out to you that the information in my 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 eNews is posted, please send an email to fmsstella@gmail.com as you will be added
to the emailing list.
I previously sent
out emails as FMSSAS eNews. Past issues
of FMSSAS eNews can be found at www.fms-sas.co.uk/fmseNews.html and on a
blog at http://fmssas-enews.blogspot.com These ceased at the end of November 2012 when
I resigned as a trustee. This blog commenced on 8th December 2012.
