Elsie experienced pain for several years before being diagnosed with fibromyalgia by her rheumatologist. She and her friends started a support group after feeling that there was nothing much being don to support people with fibromyalgia in their area.

Elsie describes her journey with fibromyalgia as being quite complex. Several years ago, one of her colleagues noticed an abnormal swelling in her hands. She also had very sensitive skin, like sparkler burn feeling and pain in various parts of her body. At the time, Elsie put it down to her debilitating arthritis. However, when painkillers weren’t helping, her rheumatologist suggested that it might be something else and mentioned fibromyalgia.

Over a few months, Elsie experienced horrendou fatigue. It soon seemed evident to her that she had fibromyalgia, and she was referred to the pain clinic. However, Elsie was frustrated that the health professionals running the 12-week course had no personal experience with pain. While she found some of the information useful, Elsie would have liked one of the facilitators being somebody that knows what it’s like every day to not be able to get up or not go outomebody that gets i. She also thinks that specialist nursing support and a fibro budd system for people who are newly diagnosed with the condition would be useful.

Fibromyalgia has impacted Elsie’s life in many ways. Although she tried to keep her long-established career as a senior social carer, she had to give up this work as it became too difficult. Having the condition also ended her relationship with her partner. Despite a medical certificate stating that she had fibromyalgia, she describes how he just thought she was being laz. Further, Elsie finds it difficult to plan for social events with friends as her symptoms vary on a daily basis. As a result, sometimes she has to cancel – something that she feels causes social problem and is not helped by fibromyalgia being an invisible condition.

Although Elsie believes she will never get better, over time she says you do get more able to cope and manage fibromyalgia and that here is hope at the en. She also feels that people are more understanding about the condition than they used to be.

Elsie and a group of her friends with fibromyalgia have set up their own amazing support mechanis. They regularly meet up and each have a phone buddy who they can contact for support. They started the group themselves after feeling that there was nothing much being don to support those living with this condition in their area. Her advice to other people with fibromyalgia would be don’t suffer on your own, get helpBe vocal about it, don’t hide i.

Elsie says that having fibromyalgia can make it difficult to plan for things and this can lead to social problems.

Age at interview 58

One of Elsie’s colleagues noticed an abnormal swelling in Elsie’s hands. At the time she was also experiencing pain in various parts of her body and sparkler burn feelings across her body.

Age at interview 58