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 the support group she set up in November of 2018 and which already has over 345 members, all with Fibro, M.E. Chronic Fatigue or PTSD.
“When I was finally diagnosed , I was given pain killers and sent away to just get on with it.” Giselle tells me. “ I saw a need for a support group here in West Wales because of the lack of information for sufferers.”
“It’s early days yet,” she continues, “but already we have brought people together. Some of our members were living streets away from each other but didn’t know about each other before they joined the group. Now they have formed friendships and networks of support close to home.”
The group have a face book 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,” Giselle tells me, “A condition where inappropriate nerve signals produced by the brain cause a range of symptoms in the body, some of which you have described. Along with all the other things that are going on, 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. We have 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 a wide range of other helpful information.”
I ask Giselle what her background is. She is very knowledgeable about the condition.
“My background is in wholistic therapies and counselling. I used to practice Massage, Aromatherapy, Reflexology, Nutrition and Sports Therapy.”
And Giselle is clear 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 mini buses, 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. She is very enthusiastic, “ I love the group. Being part of it means I know I am not alone. I have made great fiends and I just don’t feel so isolated any more.”
Mandy Sayer who lives in Kidwelly agrees that the group is a huge support. She came across the group on facebook and realised that she was not alone.
I asked both women to tell me when they were diagnosed. Both tell me that they had been ill for many years. In Mandy’s case she has had problems for 15 years but was only 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 all adamant that not being believed is by far the worst part of being so ill.
“We are treated like we are crazy,” Nicole says.
“ It’s horrible to be treated as lazy and fake.” Mandy adds.
Giselle 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 and on top of everything else it’s so mentally and emotionally draining. It is demoralising and undermining, and has a severe detrimental affect on your mental health. Most of us experience suicidal feelings and most of us have days when we have to fight to find a reason to live.”
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 and advice and support , not just for the sufferers themselves but also carers and families. We have lots of tips on managing from day to day. Reach out, share what is going on for you. Come and get to know people. We recently started an I.C E. group for members to get immediate help following Mandy becoming so unwell with sepsis. We are developing the group and will be attracting more funding so we can do so much more.”
The group can signpost, advise on therapies and arrange talks and information sessions on a range of subjects. While I was with them they had a team from the CBD Centre in Haverfordwest and we were introduced to the benefits of their oils and other preparations which members have found extremely helpful.
Giselle 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 : firstname.lastname@example.org