Fibromyalgia Support Group for Surrey and Sussex

A Short History of the Support Group.

An introduction by Jo Fisher
Founder - Co-ordinator - Development Officer

I would like to tell you a little bit about my background and myself. Then, I'll tell you something about the group.

About Me
I am a mother of five children and a grandmother to 8 grandchildren. I am a sufferer of Fibromyalgia. My occupation before I became ill was as a mature student doing my Nursing Training at Guildford University. Before that I had worked in care for many years. Other jobs included working with the public in a variety of roles.

My student training started in September 2000. But in June 2001 I injured my back on a placement. It was from that injury I developed Fibromyalgia. It took around two years before I was finally diagnosed with Fibromyalgia.

Within that time I had been in a number of hospitals and had numerous tests - scans and lumbar punctures etc. etc. all of which came back normal. Those two years were the worst two years of my life. I was frightened, in pain and felt completely out of control with what was happening to me. I knew something was wrong but every test was proving otherwise. I became desperate for help and for answers. I spent hundreds of pounds trying all sorts of alternative therapies, lotions and potions on the market. I am sure many of you will relate to my story.

It was my good fortune in the end to be seen by a pain consultant. He actually diagnosed my condition within ten minutes of my being in his room. He said that I had Fibromyalgia and that the back injury had been the cause. I cannot begin to tell you the relief I felt, finally getting a name to this thing that had dominated my family's life and mine for 2 years. The consultant said that I needed to go home and learn all I could about the condition. Then come back and see him in three months. I did this. Then I went on to do a Fibromyalgia Education Course.

In 2003 I joined the Fibromyalgia Association UK and started to read their 'Family Journal'. It was full of lots of very interesting articles. The many stories from the other members I found I could relate to. After a few months of reading the journal I decided that I wanted to get more involved, so I volunteered to be on their helpline. This was the start I suppose. I would receive numerous calls every week from sufferers who were often very distressed, angry and frustrated due to the length of time it had often taken for them to get a diagnosis. Most felt the way they had been treated, by some, but not all of the health professionals left a lot to be desired. It was then that I knew my own journey for a diagnosis was not unusual. But I began to realize that this was a regular occurrence.

In 2004 I did a Chronic Pain Management course. This has made a huge difference in the way I looked at things to do with my condition - and my life in general, I suppose.

The months passed and I started to get quite annoyed. Those sufferers were desperate for support and information about their condition. How could they go on not knowing where to get help, so they could help themselves?

About the Group
So in a moment of madness I thought "Right, this cannot go on." I decided that I would start a support group of my own. I phoned the Association and they sent me a pack about how to go about getting started. I asked the association what groups were in my area, and found to my amazement there were none in either Sussex or Surrey. So I decided to call it the Fibromyalgia Support Group for Surrey and Sussex. At least we had a name now. Those fellow sufferers could now belong to a group and know that they were not alone.

I started by booking a venue. I decided on the Hospital where I used to work, Crawley Hospital. They were very good in helping me arrange this on a regular monthly basis. Then I started to write letters, well over 1,000 (yes, one thousand) to everywhere where I could think of - Hospitals, Doctors, P.C.T's, Libraries, Voluntary Services, C.A.Bs, anywhere really that I felt the public would go. With the letters I sent out posters that I had designed on my computer and a leaflet on Fibromyalgia. I then went to my local paper and they did a story for me and so did the Crawley Local paper.

I was absolutely amazed at the response I received from the letters I had written and from the papers. I then had to arrange the first meeting and went to the Horsham Voluntary services to ask advice on how I should go about it. The 28th of June finally arrived and I was absolutely terrified!

The first meeting was attended by around 40 people it went very well considering my inexperience. Everyone there was very warm and friendly and seemed hugely relieved that at last there was going to be somewhere they could go for the support they so desperately needed.

From this first meeting I was able to get a treasurer and a secretary. I also managed to get a married couple to volunteer who said they would look after the I.T. and the future resource library we were hoping to have for our members.

I couldn’t believe how lucky I had been from just one meeting. Since this first meeting the group has gone from strength to strength. We have hundreds of members now and many more contacts through our website. We have had some incredible trustees over the last four years and we are very lucky to have had the ones that have left us and extremely lucky to have the ones with us now as they are so compassionate and dedicated to making the group work. I am indebted to them all We have had some incredible support from the media over the years. We are so grateful to them for all their support. A special thanks has to go to our local paper the West Sussex County times and also BBC Southern counties especially as they have really helped us on numerous occasions. I have also done two interviews on television for BBC South today and BBC south east.

The group has won many awards over the 4 years some of which are shown on the website. This has been a real honour for us to be recognized in that way. I was also selected to attend the BBC South Today Community Awards presentations in Southampton where I received a Commendation Certificate. This was a wonderful day and Stella our now web-mistress came as my guest as she had nominated me for it. When and if you get to know me you will realize how much I hate speaking in public. I did it because I feel so passionately about this group and what we have achieved already and what we want to achieve in the future.

But we do also need the help of our members and volunteers. The trustees cannot possibly do it alone. I cannot begin to tell you how much work is involved in running this group but the trustees are amazing and when you think they are all volunteers it is incredible. Not forgetting of course that most are sufferers themselves. So I do ask all of you to think about what you can do to help us however small or big we don’t mind. As a group we are always looking for volunteers and trustees so if this is of interest to you please do contact us, we would love to hear from you. But we do ask that you all remember that most of us have the condition too so the more volunteers we have the easier it will be. Every little helps! We also love to hear from you if you have any ideas, suggestions or comments, but we can only do something if we know what you would like or what you are thinking.

This website is run by Stella Bernardi. She has been a trustee as well and she does a fantastic job - and she is also an amazing lady.

Do have a good look round on the website there is also a message board. We are in the process of updating things so you will probably see some changes over the next few months.

We would like to thank all our funders as they are what keep this group going and they give us the opportunity to progress. Without them we would not be here today.

We have lots of different meetings, social gatherings and the like, some of which can be seen on the website and are also posted in our Bi-monthly magazine that we produce. At the time of writing it is July 2007 and we are now embarking on a new project for young people and their parents/carers. This is very exciting and news is going to be shared on the website and also in the magazines. So please do keep an eye out for all the changes coming up.

Our aim as a group is to raise awareness within the health profession and the wider community as a whole. But our main objective is to improve the quality of life of the sufferers and their families. We want these people to know they are not alone. We really do care and we really do want to make a difference.

Warm Regards
Jo Fisher
Founder and now Development officer.