Saturday 29 October 2011

FMSSAS eNews 11.10.29


Hi there!
I think I owe you a personal update.  On Thursday last week I had a CT scan for my hip.  I am due to see a surgeon at the Horder Centre in Crowborough on Thursday next (3nd Nov).  I could be called in at any time after that for a revision operation.  So when that happens it will mean that eNews won’t get sent out.  So if none arrives you will know why!  I apologise in advance, but the date is yet unknown. 
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WORDz FOR THE WEEK
43. Expecting the world to treat you fairly because you are “good” is like expecting the bull not to charge because you are a vegetarian.
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FMSSAS AGM – Today
I put in a reminder of the meeting but could not get internet access before leaving for the meeting.  Attendance was disappointing but thanks to those who used their remote voting facility the trustees were all elected constitutionally.
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Kelly’s Kontributions
1) "Obstacles to Pacing & How to Overcome Them"
The beginning of a series on how to succeed at pacing. First article explains what's meant by the term pacing
http://www.cfidsselfhelp.org/library/obstacles-pacing-how-overcome-them
2) "Getting Through the Bad Days"
One person's strategies for handling relapses.
http://www.cfidsselfhelp.org/library/getting-through-bad-days
3) Positive Associations Between Physical and Cognitive Performance Measures in Fibromyalgia
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Flupirtine – a new drug to treat FM?
The drug flupirtine has been used in Europe for more than 25 years to treat pain associated with cancer, trauma, surgery and other forms of neuropathic pain, and is now being considered as a possible new treatment for fibromyalgia. What makes this drug so attractive is that it is a non-opiate analgesic meaning that it is non-addictive with no withdrawal effects, has been reported to have minimal side-effects, and works best for pain associated with noninflammatory conditions.
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Free Tai Chi Taster session in Horsham
There is a free Tai Chi and Qi Gong taster session on Wednesday 9 November in Horsham, everyone is welcome to join this 1 hour class (7.30-8.30pm) to try out Tai Chi and Qi Gong. Details can be found here: http://earthbalance-taichi.com/tai-chi-sussex/tai-chi-horsham/
 If any members would like to try the class, they need to register with Nicola as spaces are limited due to venue size.  See more details and register on the webpage.
Courses and workshops are held in Horsham & Worthing.
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New Permit Scheme for taking mobility scooters on buses.
Surrey Disabled People’s Partnership wants to make sure people are aware of a new permit scheme that has been introduced by bus operators. This scheme means that people using mobility scooters are required to apply for a permit to take their scooter on a bus. If they do not show a permit when accessing a bus, they will be refused to travel.
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Daily Mail article about Alpha Stim
Could a £299 electric earring help control chronic pain?  The Alpha-Stim sends tiny amounts of electricity into the body via probes, sticky pads or clips attached to the ear lobes.
It is said to work by blocking the transmission of pain signals, in the way TENS machines do — but at a different frequency which, it’s claimed, is closer to the kind of electrical impulses that occur naturally between cells.   The current level is low, so the user barely feels anything.
See also Alpha Stim website  http://www.alpha-stim.com/
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Can changing your diet help you recover?
A healthy body that is a an appropriate weight for your height and age gives you the best base from which to control your Fibromyalgia.
A balanced diet will enable you to get the nutrients your body needs. Details of my balance diet are contained in my book Forget Fibromyalgia, Putting the pieces Together.
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Fibromyalgia Self-Help
Article on Worthing Support Group’s website
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BioMag Therapy
“Magnetic therapy will free you from all your pains.
Lives have been transformed just by wearing our precious bracelets.”
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Cuddle Ewe™ - The Luxurious Gift for All Seasons
20% discount on Cuddle Ewe bedding. 
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Fibro Lads Mag - Men with Fibromyalgia - How Men Are Different
For generations women had a tough time convincing doctors to take them seriously for many medical conditions, especially Fibromyalgia. Women have been called hysterical and told to curtail their active imaginations. However, men with Fibromyalgia are dealing with an entirely different issue; they just don't talk about it. Can you blame men for not coming forward with a women's disease when she is being told that it's all in her head?  Read more . .


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Enjoy Hallowe’en!  Hope you don’t get too many Trick or Treaters.  Don’t forget to put your clocks back tonight.  Urrh – evenings getting dark even earlier,  never mind – lighter mornings will help.
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.  Anyone wishing to reproduce any of the above items in printed form should seek permission from the originators.
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/

Saturday 22 October 2011

FMSSAS eNews 11.10.22


Hello again
This is the last eNews before the AGM.  Please be sure to read the notes about this below. 
Here’s wishing you happy reading.  May it be beneficial.
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WORDz FOR THE WEEK
42.  Life is a game, play it; Life is a challenge, meet it; Life is an opportunity, capture it.
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AGM 29th 1pm at Chichester Park Hotel
A reminder that the voting forms for the trustees’ nominations should be with me by Thursday 27th.  PLEASE complete your forms asap and send them by email or post.  If you have mislaid your form email me and I will send you one.  Note that only members of FMSSAS are eligible to vote.  Please do your best to attend the meeting as well.  We do need people to be there!  The room where the meeting is to take place is on the GROUND floor, contrary to the information included in the Trustees’ Newsletter 10.  Apologies for this error.
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Open Letter To Normals.
How to explain your condition to those who share your life.
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Nutritionist Resource
This site was set up to connect visitors with a wealth of information and the ability to search for the most suitable nutritionist.  A useful resource for those looking for support or general advice about nutrition.
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For Nature Lovers – Woodland access
VisitWoods have their own web pages within the Woodland Trust website. The purpose of the site is to inspire disabled people to visit woods and make it easy to search for woodlands near to you. The site has also been designed to allow people to share information about their own personal experiences using blogs and by uploading photos.
http://visitwoods.org.uk
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Stretched to the limit:  An audit of physiotherapy services in England
A report from the Chartered Society of Physiotherapy
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Message from Ann Thayre, one of our members
“We have put in a bid to Nat West for funding to keep ourselves open and improve on what we have.  We are through to the final round so please vote for us by going online and voting at www.natwest.com/communityforce
I do warn you that it takes about 5 minutes maybe more as you need to register and then go back to your emails to complete registration. However I implore you to keep going as we really need the money. Our group name is Southlanders and the post code is BN43 6NN and we come under Brighton.  THANK YOU IN ADVANCE FOR VOTING.”
I have voted – will you?  Voting closes tomorrow so act now!  S.
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American Pain Foundation
PAIN MONITOR October 2011 (Newsletter)
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Scientists find gene that controls chronic pain
British scientists have identified a gene responsible for regulating chronic pain, called HCN2, and say their discovery should help drug researchers in their search for more effective, targeted pain-killing medicines.
AND
Chronic Pain Gene - HCN2 - Identified, Hopes For New Targeted Pain Drugs
A gene called HCN2 produces a protein which regulates chronic pain, researchers from Cambridge Unive rsity, England, and the University of Cadiz, Spain reported in the journal Science. They added that medications which inhibit the gene's protein production could be extremely effective in combating chronic pain.
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Gentle Yoga classes in Chichester and Selsey
Gentle Yoga classes for the beginner or those living with long term health conditions ( eg Fibromyalgia, CFS / ME, Arthritis, Diabetes, Cardiac, Hip / Knee replacement etc)
Gentle Seated Yoga ( Yoga in a Chair ) for the absolute beginner or those with limited mobility.
For details of classes in Chichester and Selsey please contact Sarah Owen Tel: 01243 781920 or e-mail: sarah.owen7@virgin.net
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Managing Fibromyalgia - The Magic of Magnesium 
“Let me start out by saying that magnesium is essential to every living cell in every living organism!  Yet, while actual deadly deficiencies are not common, nearly everyone in the Western world can be classified as having magnesium insufficiency. This fact is especially worrisome for those in pain. “
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Positional Cervical Spinal Cord Compression and Fibromyalgia:
A Novel Comorbidity With Important Diagnostic and Treatment Implications
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Initial Press Statement from The AONM & The Midlands Fibro Support Group Tullamore - International Conference 2011
http://www.facebook.com/note.php?note_id=238977209484948
Presentation Summaries from Tullamore Conference 2011
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I hope you found something useful in this week’s list.  We all grasp at straws to find relief from fibro and this can sometimes come unexpectedly.
Kindest regards 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.  Anyone wishing to reproduce any of the above items in printed form should seek permission from the originators.
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/

Saturday 15 October 2011

FMSSAS eNews 11.10.15


Greetings Fibrofriends
Another beautiful day – just when I thought all the good weather had finished!  I count it as one of today’s blessings.  Have you ever tried to count blessings day by day?   Even if feeling ‘down’, being thankful for even the smallest things can make you feel better.  Try it!
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WORDz FOR THE WEEK
41.  Life doesn’t always give second chances, take the first one.
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Kelly’s Kontributions
Executive Function in Chronic Pain Patients and Healthy Controls: Different Cortical Activation During Response Inhibition in Fibromyalgia.
1) "Nourishing Relationships"
How one person with CFS learned to maintain healthy relationships while
staying within her energy envelope.
2) "Adapting to Fibromyalgia"
By focusing on the many practical things she could do to feel better,
fibromyalgia patient Jana Murrell-Maxfield made a successful adaptation to
long-term illness.
Opioid Use in Fibromyalgia: Potential Problems
Undiagnosed Diseases Programme NIH into CFS and FM
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The Optimum Health Clinic  Freedom from ME Blog
A series of videos about Nutrition, Fibromyalgia, The biochemistry of emotions
And more . . .
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The PainCareClinic & The Massage School
Self Help Myofascial Release Workshops, 12th & 19th November, in Hove.
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Surgery for Fibromyalgia?
Could this be the answer?  Not actually new - maybe too expensive to be viable.  But -  interesting theory.
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Tai Chi, Qi Gong & Meditation
 Classes in Horsham
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We are the Hardest Hit - Disabled people to protest across the UK
Rally in the South East – at Brighton, on 22nd October. 
“The rally is taking place in Jubilee Square, Jubilee Street, Brighton from 11.30am, although we expect people will begin to assemble from 11am.  We plan to have a range of speakers who will keep us informed and entertained. . . .”
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HM Government E Petition
Scrap the one year time limit on claiming ESA. People with long term chronic illness (including ME/CFS) will suffer financial hardship and stress
If you you agree with this premise, please sign the petition here:-
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Worthing Fibro Newsletter
October’s Newsletter is here
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Presentation Summaries from Tullamore Conference 2011
For those of us who could not be there, this report has helpfully been supplied.
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Liberating the NHS: Extending Choice of Provider
In its response to the NHS Future Forum listening exercise, the Government has
confirmed its commitment to the increased choice and personalisation of NHS funded
services. Extending patients’ choice of healthcare provider is intended to empower
patients and their carers, improve their experience of NHS funded services and improve
health outcomes.
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Spend and Raise
Latest news and special offers.  When you Spend you Raise money for FMSSAS.
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HACVS Newsletter 79
The October edition of the Horsham Area Council for Voluntary Service’s  newsletter is now available by following the link below.
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Welcome to Pure Bio's Autumn Newsletter !
This month's topic: Osteoarthritis.  [Many of us suffer from this as well as fibro so this might be useful.]
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"HOW TO BE PAIN FREE IN 7 EASY STEPS?"
Freedom from Fibromyalgia Pain – without drugs. It is possible to reduce the pain of fibromyalgia without taking drugs. Find out more by reading Ann Hobbs' free report, - “How to be Pain Free in 7 Easy Steps”. To sign up visit http://tinyurl.com/annhobbs or email ann@annhobbs.co.uk  with your name and email address for your complimentary copy. Ann is UK's leading expert in helping people be free from pain.
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Perhaps there is something for you to be thankful for here?  I am thankful that I am able to communicate with so many people all at once creating an instant community of friends.  Thank you for being a friend.
Best of wishes to 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.  Anyone wishing to reproduce any of the above items in printed form should seek permission from the originators.
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/