April 2008
Radio responses
Following an interview with BBC Essex yesterday the phone barely stopped ringing!
There are many people out there with fibromyalgia who don't know who to turn to for advice and support still, longing to find other in a similar situation. It's great to have made contact with so many people over the recent months, but there are still many more!
Welcome
Welcome to the new FMSupport webiste!
The new site will enable us to offer much more information and also will allow you (in time) to add information directly yourselves. You may find it takes a bit of time to get used to how the new site works, but in short you can find all the main content by following the links in the bar at the top of the page, holding the mouse over some of the page names above (eg Living with Fibromyalgia) will cause a popup list of other 'sub-pages' to appear.
The site includes a 'blog' - of which this post is in fact a part - which will allow us to provide fresh and updated information on a regular basis. Generally, you will also be able to add a comment to any post made to the blog and some other users will be able to post articles on the blog to help get as much information as possible on to the site.
There's also a forum under development and a new downloads page which will be easier to use than the previous one. If you sign up as a user of the site you'll be able to receive an email whenever there is new content added.... more on that another day!
Press Release - Fibromyalgia Support Group for South Essex
'Sick and tired of feeling sick and tired' is how some Fibromyalgia sufferers summarise how they feel. The 'everything hurts' syndrome is a common nickname for this chronic condition of widespread pain and chronic fatigue, which many people suffer with for years without a diagnosis, often thought of as lazy or malingering, probably told frequently to pull themselves together, or that it's all in their head, whilst they themselves feel completely drained of all energy, as if someone pulled the plug. In spite of this they struggle on, their home and social life suffering as the effort to continue working is so great, it is all they can do to climb up to bed when they get home. They long to wake in the morning feeling as though they have slept, and with enough energy to get out of bed – let alone through the day – without really knowing what is wrong or how long it may last.
People are so relieved when their symptoms of aches and pains, fatigue, irritable bowel, lack of
concentration, sensitivity and disturbed sleep are all put down to one condition – fibromyalgia. The relief is often short-lived though as more often than not they are discharged by their Consultant quicker than they were diagnosed, and left to get on with it. There is no cure for fibromyalgia, though there are treatments for some of the various symptoms, with varying levels of success. Despite being a common illness – as common as rheumatoid arthritis – there are no fibromyalgia departments, and very few fibromyalgia specialists. Most people have to go from one department to another for treatment for each part of their condition, with each specialist ignoring the symptoms outside his/her remit. The only person concerned with the whole is the patient and, if they're lucky, their GP – though often even that is not the case as there are still some medical professionals who do not believe in it as a diagnosis and many more who do not even know how to diagnose it.
It is partly because of this frustration that a Fibromyalgia Support Group is being setup to provide
information and support for anyone affected by Fibromyalgia locally. Working closely with the national
fibromyalgia charity, FMAUK, and the local Primary Care Trusts, FMSupport will be holding regular meetings and facilitating peer support across South Essex as well as operating a local helpline which has already received many calls not just from fibromyalgia sufferers but also from family, friends and medical professionals wanting to know how best to support someone with fibromyalgia.
Monday, 12 May is International Fibromyalgia Awareness Day and will be marked by a coffee morning in
Westminster for MPs and fibromyalgia sufferers and supporters. FMSupport will be holding their own
coffee morning on Wednesday, 14 May from 10am until 12noon at Stanford-le-Hope Methodist Church.
Further details of the coffee morning, fibromyalgia, and other local activities are available on the
FMSupport website at http://fmsupport.org.uk
Anyone affected by fibromyalgia, whether they suffer with it themselves, or care for someone who
does, is welcome to contact the FMSupport helpline, available on 0844 443 7189 at the following times: Monday 9am-11am; Tuesday 1pm-3pm; Wednesday 1pm-3pm; Thursday 7pm-9pm. A voicemail system operates at all other times, though it is hoped to extend the helpline times.
For further details of FMSupport (South Essex) and Press Enquiries, please contact
Steve Westrop, Project Manager, FMSupport, PO Box 1942, Stanford-le-Hope, SS17 0DE
Phone/Fax: 0844 443 1189 Mobile: 07779 345667 Email: steve@fmsupport.org.uk
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50 signs of Fibromyalgia
There are many different 'symptoms' that Fibromyalgia Syndrome sufferers may have. Some are more common than others, and these are explained in our 'Common Symptoms' booklet. The list below includes 50 potential symptoms:
Downloads
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Young People & Fibromyalgia
We are particularly concerned about the way in which FM can affect young people - by which we mean anyone under 25, but particularly those still at school.
This is an area where Fibromyalgia is increasingly common and increasingly neglected.
Although many of the same coping strategies and treatments can benefit young people with FM, and statistically younger people recover better than older sufferers, there are specialist issues that need consideration - not least issues surrounding school and education.
We are also concerned to be able to make available a safe place for young people to talk. Whilst there are many other forums out there already that welcome young people, concern has been expressed that some of the topics on those forums may not be appropriate for younger people struggling to come to terms with their condition and its impact upon their lives and their family.
Supported by medical and educational specialists, parents, counsellors and other agencies and organisations, we are seeking to provide a national network within which young people can share their thoughts and feelings, get answers to common questions, and arm themselves (or their family) with the necessary facts in order to get the support they need - and are entitled to - at school.
For further information on this project please email yp@fmsupport.org.uk
Parenting with Fibromyalgia
We are currently looking to produce some specialist information for parents with Fibromyalgia, and setup a focus group to discuss the specific issues, working with Fibromyalgia Association UK (FMAUK), Disabled Parents Network (DPN), and Disability, Pregnancy & Parenthood International (DPPi), and other interested agencies and organisations.
There will be a specialist area on our forums for discussion between parents with FM and we will also be developing our Peer-Support Network in order to facilitate ongoing discussion, dialogue and mutual support between parents.
If this of interest to you please email parenting@fmsupport.org.uk
Living with Fibromyalgia
There is no wonder-cure for Fibromyalgia, though there are several things that may help some people, and some things that may help several people,... just as Fibromyalgia affects everyone differently, so everyone also has to manage their Fibromyalgia differently.
We welcome tips and advice from anyone and will share them via our site and newsletters, but what works for one person may not work for another, or may even make things worse!
We will be adding to this section in the coming weeks, but please follow the links below for more information about two specialist areas we are currently putting a lot of time and effort into researching, developing and supporting.
Parenting with Fibromyalgia
Fibromyalgia in Young People
Survey
The online survey is currently being redesigned for the new site, and will be back on line shortly. In the meantime, please contact us directly.
Contact Us
We'd love to hear from you! The easiest way of contacting us is to complete the form below or send an email to us directly, info@fmsupport.org.uk. If you prefer you can call us on 0844 443 1189 but the phone lines are only manned for a few hours each week at present, an answering service is available at all other times.
You can also write to us at FMSupport, PO Box 1942, Stanford-le-Hope, SS17 0WU.
