Jules wakes in the night every half hour in pain and a knock to the knee takes her breath away.
Yet Jules Jones, like other fibromyalgia sufferers, looks to the world like any other healthy young woman.
Which is why Jules, of Whaplode Drove, worries that people might judge her and other sufferers, wondering if they are actually inventing the symptoms.
She says: “Because you try to run your life normally, and often sufferers are busy people with jobs and families and the rest of it, you find some days you can cope relatively well and other days you can’t.
“One sufferer is walking with sticks one day and another day she is on her bike.
“You do worry that people think you are making it up and that can be really disheartening.”
There is also the fear of boring close relatives and friends with complaints about the latest symptoms – which can be anything from muscle pain and stiffness to poor concentration.
However there is a bright light on the horizon for sufferers in the shape of a new support group that meets at the White Horse in Spalding.
It’s an off-shoot of a group that has been meeting in Stamford since last April. Both groups are now known as the Stamford/Spalding Fibromyalgia Support Group, run alongside the national association – fmauk.org
Christine Johnson started the group to help both herself and her 20-year-old daughter Hannah, who is also a sufferer.
Christine was diagnosed about three years ago and her daughter 18 months ago following a car accident.
Christine says a trauma can trigger the condition, although it is also hereditary.
In Jules’ case it was a “massive chest infection” that got into her heart in 2012 that she believes probably triggered fibromyalgia, although she had suffered pain for many years.
Her official diagnosis came in Easter 2013 and Jules made contact with Christine because she needed help.
She attended meetings in Stamford, but like other local people, found the journey too taxing.
A decision was taken to start the group in Spalding because, as Jules says: “At the support group you can talk and listen to other people and that sharing profoundly affects people and it’s normalising because you are mixing with people with a shared experience.”
The next monthly meeting is on March 10 (1-3pm). The helpline is 0844 8872604.