Welcome
Hello and welcome to Fal Fibro Friends..
This website is for anyone with a connection to Fibromyalgia, the ‘invisible’ illness..
The Beginning My name is Ali Rowe and I started Fal Fibro Friends in November 2009.. I became involved with Fibromyalgia support due to my concerns over the lack of support for Fibromyalgia sufferers throughout Cornwall.. I was diagnosed with FM approx 8 years ago although looking back I have had the symptoms for many years before that.. I probably developed FM in 1982 following the death of my mother but at that time, FM wasn’t really known about and as I was only 15 years old so all my symptoms were just put down to ‘grieving’ for the loss of my mum.. As my life evolved I had many traumatic experiences and then in 2004 things came to a head with my mounting health problems.. At that time I was diagnosed with severe depression and anxiety problems.. After moving back to Cornwall from Dorset in 2005, I was fortunate enough to have a wonderful GP who sat me down for 20 minutes and went through all of the problems I was having.. He diagnosed FM from what I had discussed with him but he then referred my to see a Rheumatologist at The Royal Cornwall Hospital who gave me the ‘official’ diagnosis of severe Fibromyalgia.. I spent the next few years in a bit of a blur and following a personal crisis I met the man of my dreams who totally understood all of my FM symptoms because he had it too !! .. It should’ve been the happiest time of my life but on the contrary.. I started to develop more and more associated illnesses – tendonitis, migraines, forgetfulness and a depressive illness so deep that I started to get suicidal thoughts.. I didn’t want to live in constant pain, doing and saying stupid things.. I had to do something so I then started to research this FM thing to see if there was any support locally, a support group maybe.. To my horror and disappointment, there was nothing !!.. Once diagnosed with FM it seemed that you were just left alone to deal with it however you could.. Now, almost 2 years later, I am pleased to say that I can help and support others who have come to that point, where life seems hopeless, where they feel isolated and worthless, where the pain is constantly with you, day in day out, night in, night out .. About Fal Fibro Friends Fal Fibro Friends is a group of approx 25 people all of whom suffer from Fibromyalgia or care for / know someone with FM.. We are an informal group who enjoy chatting to others experiencing the difficulties of living with FM.. If we have slurred speech, forget what we were saying, say the wrong words, it doesn’t matter.. We often have visits from a qualified Reflexologist, Gill Middleton, who does “taster” sessions for a small fee, some of which she donates to the group .. We invite visitors from other organisations to come and talk to the group about their work with-in Cornwall and also work with local MPs and other ‘VIP’s’ regarding raising awareness of Fibromyalgia in Cornwall.. There is a lack of awareness countywide of FM including within the medical profession and we, as a group, intend to change this any way we can.. We offer support throughout Cornwall via email, phone and text.. Not everyone can attend regular meetings so we produce a monthly newsletter to keep members informed of our recent activities, any new research along with tips from other sufferers on how they manage their illness.. We have a ‘member’s library’ of informational books that can be borrowed and also enjoy outings occasionally.. We try to attend Fund-raising Events as often as possible, not only to raise money for the group but also to raise awareness of our illness and it’s affects on sufferers and their families / carers .. Our Aims In the short term Fal Fibro Friends is aiming to put Fibromyalgia into the public eye throughout Cornwall.. FM is still a poorly understood illness that many, many people have not even heard of.. It is still described as purely a “pain and fatigue” syndrome when, as sufferers, we know it is much more than just that.. FM can cause severe disability resulting in many different difficulties faced daily by sufferers and their families.. We would like to be able to publicise Fal Fibro Friends as much as possible, at events throughout Cornwall, on radio stations and in the press.. We would like to involve the medical profession in our aims along with MPs who can help us to bring this “invisible illness” out from behind the scenes and into everybody’s minds, as well known as Chronic Fatigue Syndrome or ME.. In the long term we would like to see a dedicated “care team” for Fibromyalgia people in Cornwall along with a specialist treatment / support centre that is easily accessible and open to all that have a connection with FM.. Fal Fibro Friends will carry on holding the torch for all sufferers, their friends and families until such times that Fibromyalgia is recognised as the illness that it truly is.. Life changing.. Ways That You Can Help As a voluntary, organisation we are always looking at ways to keep financially afloat and help with spreading the “F” word !!.. Everything costs money and to run a support organisation we need to keep Fund-raising so that we can produce posters, newsletters, write letters, leaflets etc.. We have to buy printer ink, stamps, paper, envelopes along with craft items to make things to sell.. As most of the Fal Fibro Friends are disabled, Fund-raising is not an easy subject.. We cannot guarantee that we will be well on the day as our illness changes hour by hour.. Lifting, standing, packing cars, these are all things that we find very difficult to do.. Some ideas of ways that you can help :- Helping us at Fund-raising Events and Information Days, manning the tables and also to help with setting up Events and clearing up after Events..
- Cash / Cheque donations are always very welcome and cheques can be paid into our Bank Account..
- Donations of new / nearly new items to sell or use as prizes are welcomed with open arms as this will save us from having to buy them..
- Spread the ‘F’ word…. Fibromyalgia is an illness that affects over 4.2 million people in the UK so why is it that whenever you tell someone what your illness is, you get a reply of ’uh’?? ..
- Place a collection box in your place of work, with the proprietors permission of course ..
- Hold a Fund-raising Event – coffee morning , a Sponsored Event , the limits are endless as long as it’s legal !!..
- Put up a poster in your local shop – they don’t usually charge for charity posters..
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