On Air Now
Heart's Feel Good Weekend with Sian Welby 10am - 1pm
A mum from Theale is petitioning the Government to spend more researching a little-known condition, after being diagnosed with it.
Imagine feeling so bad you can't even take your kids to school in the morning.
A mum from Theale has told Heart what it's like coping with Fibromyalgia. Sally Darin-Brame, 35, was diagnosed with the condition recently. It's left her in chronic pain, bed-bound and unable to leave the house without the aid of a walking stick or, on her bad days, a wheelchair.
Fibromyalgia is an "invisible illness" and doesn't have any noticeable visible symptoms. Often sufferers can live with the disease for years without realising what the problem is.
Sally said this is exactly what happened to her, "I think I've had FM for around 14 years. I've always suffered from bad headaches and bowel problems, this increases to other pain around the body when I have to go through stressful situations. After the school summer holidays I was in bed for 2 months recovering."
The Fibromyalgia Association UK describes it as a "chronic condition with widespread pain and profound fatigue". The symptoms are many, as well as "aching and burning pain", sufferers have reported:
Non refreshing sleep
Waking up tired and stiff
Clumsiness and dizziness
Sally told Heart her diagnosis has had a huge effect on her family, "My ten year old son is the one that gets tea ready. He's the one who makes me a cup of tea and makes sure I take my medication. It doesn't just affect me, it affects the whole family."
On top of not being able to take her children to school, Sally admitted she misses spending time with her family, including her five year old son who was recently diagnosed as autistic, "I just want my life back. I'm only thirty five and have young children, I can only imagine how they must be feeling. When my wheelchair arrived the other day, I could tell my ten year old was upset at the thought his mum has to be in a wheelchair."
Sally and other FM sufferers are determined to find out more about the condition ruining their lives, in the hope a cure or treatment can be found. Sally said, at the moment, little is known, "It isn't clear what the cause is, or the best way to treat it. That is what makes coping day to day so hard. Many doctors won't even diagnose the condition, as so little is known about it."
Sally is hoping the Government will spend more researching the disease, and has set up a petition with other FM sufferers for her cause.