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Feelings about getting a diagnosis of fibromyalgia
We asked people to describe how they got their diagnosis of fibromyalgia. When describing how they got their diagnosis, many also discussed how they felt...
It’s not generally known what causes fibromyalgia, but in many cases the condition seems to be triggered by a physically or emotionally stressful event. It’s also been suggested that in some cases it could be hereditary. Several of the people we talked to reflected on what they thought might have caused or triggered the start of their symptoms. Generally, these seemed to be connected to traumatic events in the past (e.g. car accidents, sports injuries, assault) or big life changes like, for example, a marriage break up or bereavement. At the same time, some people said they could not pinpoint any particular reason why it had happened to them.
Liz and Martina both started noticing symptoms of fibromyalgia shortly after being involved in car accidents. Liz also had a series of falls on the same day as her car accident, but at first doubted the doctor’s suggestion that the car accident and fall were the cause of her fibromyalgia.
Martin describes being assaulted and robbed in the 1990s and says his initial pain started in his back.
Around the time Bette started noticing symptoms she was looking after her disabled mum and grandmother with dementia, who both later passed away. She also describes not being informed that her father had died around this time. The stress associated with these events made her symptoms worse.
Rosie first noticed there was something wrong or different when she was about 10 or 11 years old. She describes being a very sensitive child, experiencing physical reactions to various events and stresses in her life (e.g. pins and needles, pains in her hand and legs, bad headaches). She thinks these reactions were ‘just tension and holding things in’ and looking back she thinks these symptoms were actually fibromyalgia.
Rosie finds that knowing her symptoms are often stress-related helps her control the condition.
Some of the people we spoke to mentioned that their doctor thought it might be a virus or post viral fatigue that was initially causing their symptoms. Helen describes questioning this as she didn’t feel like she had had a virus at the time. Jacqueline talked about her symptoms starting when she was recovering from glandular fever, something she describes as being ‘very very’ sick with. Michael thinks that the neurological problems resulting from his past treatment for cancer contributed to his fibromyalgia.
A few people mentioned that they or other family members had auto-immune conditions, and there is some suggestion that it could run in families.
We asked people to describe how they got their diagnosis of fibromyalgia. When describing how they got their diagnosis, many also discussed how they felt...
We asked people about their interactions and discussions with health care professionals. Views were mixed. Some people felt believed, listened to and taken seriously. They...