FMSupport

A new facebook group - FMYP (Fibromyalgia and Young People) - has been setup to give young people affected by Fibro a chance to chat together.

As you may know, this is an area that is of particular concern and something we want to work hard to raise awareness of.  It’s great that we are able to work together with Lindsey from FibroAction to provide this form of peer-support for young people and we’re looking forward to seeing where it goes.

FMAUK have recently appointed Steve as Regional Co-ordinator for London and Essex.  Anyone visiting the national FMAUK website wanting local information will now be passed onto us.  Similarly, anyone interested in setting up local groups in otyher parts of Essex and London will be supported by Steve.

We have been slowly building up contacts across Essex throughout the year, so co-ordination of Essex is no big deal in many ways.  However, there is very little support across Greater London, and several enquiries have already been received about support in the area.  Hopefully we will be able to identify people in the area to help establish support groups, but in the meantime there is now a group on Facebook - the Fibromyalgia Association UK London Network.

It was great to see so many people at the meeting on 1 October - lots of new faces as well as some familiar ones, and some really helpful discussion - thanks all!

We’ll post a full report and feedback next week, but the following Committee members were elcted:

• Steve Westrop, Chair & Project Manager
• Helen Watts, Group Secretary
• Maggie Stewart, Treasurer
• Den Owen, Social Secretary

We will be looking to co-opt two further members in the near future, and also to announce other positions and support.  A huge thank you to everyone who offered to get involved and shared their ideas and thoughts.

We have collected a list of names from the evening and I hope to remember all the other offers of help that were received, and will follow those up over the next week.  If you don’t hear from me, remind me… you know how it is! If anyone else is interested in getting involved, please let me know.

You may have noticed that the forums are no more.  There’s been a lot of discussion recenlty between a number of us that are involved in running regional and national fibromyalgia forums - both official and unofficial - and I am keen to see the primary sources of communal information develop, rather than splintering off into smaller groups with less information available.

The FMSupport forums would have been used primarily for discussion related to some of the specialist areas that we are supporting and developing, but we hope to provide this instead as part of the major national fibromyalgia community forums.

To discuss fibromyalgia with others, or just to chat to others who understand it more than most, we recommend visiting the Fibromyalgia Association UK community forums, which also includes a section for young people).  The forums can be quite busy, and sometimes it can be difficult keeping up with the conversations, but there is a wealth of knowledge there, some excellent advice, and fibro-friends waiting to be found!

The UKFibromyalgia Forums are also excllent, and quieter than the FMAUK forum, which some people may prefer.  Lots of information and support here also, though the site also carries third-party advertising… if you follow any of it please weigh up the validity of any claims made.

Many people with fibromyalgia experience episodes of unclear thinking or cognitive dysfunction. They become forgetful, lose their train of thought, forget words or mix them up. This is what is popularly called “brain fog” or “fibro fog.”

Fibro-fog is possibly one of the most common yet unrecognised symptoms of fibromyalgia, and can include:

• short-term memory loss
• difficulty remembering where you put things
• difficulty remembering plans
• difficulty with language, including trouble holding conversations, understanding conversations, and expressing thoughts
• difficulty finding the right word to use in conversation
• trouble remembering simple numbers
• transposing letters and numbers
• trouble concentrating and focusing
• trouble retaining new information

Fibro-fog tends to have negative effects on fibromyalgia symptoms and the course of the illness, causing people with fibromyalgia to forget important self-care techniques including stretching and exercise, or taking medication. It can be one of the most frustrating symptoms of fibromyalgia, and is often coupled with depression.

Like so many of the symptoms of fibromyalgia the exact cause of fibro-fog is itself unclear. Lack of refreshing sleep almost certainly has a bearing, though it is also possible that a decreased blood-flow to certain areas of the brain contributes to the problem, or that the brain is so busy processing the myriad of pain signals that it cannot form new memories properly. Many people find that keeping their brain active helps to combat the problems and embarrassment of fibro-fog. For example, doing a crossword or sudoku puzzle.

This post is taken from our “Common Symptoms booklet”, and is provided for information rather than self-diagnosis!

Apologies to anyone who tried to download files from the site in the past few days.  The code has now been edited and downloads are now working properly.

Click on downloads to see what is available.

We have completed our membership application and merchandise order form, and are posting these out to new and existing contacts.  The form is also available online to download and print.

Membership is £10 per year, or £5 for those on means-tested benefits who may not be able to afford the full membership fee, and also for carers and family members of existing members, who also wish to receive their own copy of all mailings.

There is an option on the form to join the Peer Support Register, and to subscribe to FaMily magazine, and opportunity to purchase other items.

Download the form below, or contact us for a copy in the post!

  Membership Form (84.3 KiB, 120 hits)

The Thurrock Gazette will be including details in their paper this week, but have already added information online.  You can view their online write-up, and comment on it also if you wish, on the Thurrock Gazette website.

A number of people have asked about money and supporting us recently, so I thought I’d share some bits about finance…

Technically FMSupport is in debt right now - though as I’ve not yet claimed any expenses our accounts show a nil balance rather than a deficit :-)  It’s been really ensouraging to have had so many people phone and email to share their story and ask for more information, and great that some people have offered to place posters  in their locality… but the costs of printing and postage are adding up!

We’ll shortly be sending out membership forms.  Annual membership will be £10, and this will help to cover some of these costs and also any expenses that are incurred at future meetings (though there will probbaly be a nominal charge at meetings also), for example speaker’s expenses, venue hire, refreshments.

We are wanting to get many more posters displayed throughout South Essex, and are considering having them properly printed.  Whilst we have some excellent, competitive quotes, we don’t yet have the money to go ahead.  We’d also like to get some information leaflets produced… again, it all costs money.

Our website and phone services have been provided free of charge, and we also currently do not pay for any phone calls we make.  Steve and Helen give their time, experience and expertise for free, which helps keep costs down, and we do not have to pay for our insurance as it is covered by FMAUK.

The information packs cost about 50p each to put together and mail out.  At present we’re getting 2-3 enquiries a week and sending out info as a result, though with the press campaign at present this will increase - we’re sending out a dozen packs this weekend as a result of the radio interview.

The posters will cost about £100, and we’ve not got quotes yet for other materials we are trying to get produced.

If you want to make a donation to FMSupport you can send cheques to FMSupport, PO Box 1942, Stanford-le-Hope, SS17 0WU.  Alternatively you can make BACS payments directly to our account - number 01537570 - at LloydsTSB - sort-code 301834.