Support For Fibromyalgia Sufferers
Fibromyalgia is a medical condition characterized by widespread musculoskeletal pain, fatigue, and a host of other symptoms as diverse and individual as the person challenged by the condition.
When I met up with Giselle Barton, otherwise known as Chisel to her friends and family, we talked about what Fibromyalgia means to the people who have joined her support group.
“When I was finally diagnosed, I was given pain killers and sent away to just get on with it.” Chisel tells me. “I saw a need for a support group here in West Wales because of the lack of information for sufferers.”
The group have a Facebook page which is very lively and very positive. Fibromylagia, like chronic fatigue, and M.E can be difficult conditions to understand and sufferers often experience a lack of support and even hostility from the medical and the welfare system.
With additional symptoms as diverse as hypersensitivity to pain, light, smells and sound, memory loss, difficulties in communication and sudden and extreme fatigue, it’s not surprising that anxiety and depression are also common. The whole condition is exacerbated when not believed by doctors or benefits assessors.
I tell the group that soon after my own diagnosis a social work colleague had described the service user with Fibro that we were about to visit as having, ‘lazy cow syndrome.’
The group are shocked but not surprised.
“Fibromyalgia is a neurological condition,” Chisel tells me, “A condition where inappropriate nerve signals produced by the brain cause a range of symptoms in the body. People with Fibromyalgia can experience pain on a level five times greater than non-sufferers. It’s not surprising that so many of us feel desperate and even suicidal at times.
Chisel has produced a handbook with a wide range of information that people can take with them to appointments or just have for their own personal reference. There are 215 symptoms listed in there along with other helpful information.”
I ask Chisel what her background is.
“My background is in holistic therapies and counselling. I used to practice Massage, Aromatherapy, Reflexology, Nutrition and Sports Therapy.”
She stresses that diet and therapies like massage are extremely important in managing the condition. “ Most people who are this unwell are living on low incomes. Many have had to fight for benefits. The cost of most alternative therapies are way beyond their means and the mainly opiate pain relief often offered by GP’s are addictive and have serious side effects. The group are working towards providing free or subsidised therapies that are affordable to members. We also have taster days where we can find out what works for us and group events like Hydrotherapy which is so much cheaper when booked as a group.”
The group also understand the need for days out that allow people to get to know each other and are applying for funding for minibuses, and the hire of mobility scooters. They also have monthly get-togethers across the three counties of Carmarthen, Pembrokeshire and Cardiganshire.
I spoke with Nicole Rickards, a member of the group from Carmarthen and asked her what she gained. “ I love the group. Being part of it means I know I am not alone. I have made great friends and I just don’t feel so isolated any more.”
Mandy Sayer who lives in Kidwelly agrees that the group has been a huge support since coming across it on Facebook.
I asked both women to tell me when they were diagnosed. Both tell me that they had been ill for many years, Mandy for 15 years before being diagnosed 5 years ago. Nicole was unwell from her teenage years but received her diagnosis at age 30.
With so many horrible symptoms to contend with, I ask the women what is the worse thing about Fibromyalgia?
They are adamant that not being believed is by far the worst part of being so ill.
Chisel says, “There is a lot of ignorance and we are often not believed, People with Fibromyalgia know only too well about having to fight for support. This is demoralising and undermining, it has a severely detrimental effect on your mental health and many of us experience suicidal feelings .”
What do you advise people to do when they are feeling so low?
“ I want people to know that they are not alone. Join the group. We are listening to what people want and are devising strategies, advice and support. We don’t just work with sufferers but also with carers and families and we offer tips on managing from day to day”
The group can signpost, advise on therapies and arrange talks and information sessions on a range of subjects.
Chisel adds, “Don’t forget to tell people that this is a very positive, group. We aren’t just about the challenges. We also know how to laugh and lift each other up.”
To see more go to Facebook: Dyfed fibromyalgia information & Support group
Email Giselle: email@example.com