Aleysha
Aleysha started experiencing pain when she was 16 and was diagnosed with fibromyalgia in 2019. Aleysha thinks that there needs to be more information and practical support regarding the impact of fibromyalgia on people’s emotional and mental wellbeing.
Aleysha first started experiencing problems with chronic pain in her back when she was 16. At this time, she was still at school and training semi-professionally with a sports team. Her parents initially attributed her back pain to growing pain, and she saw a physiotherapist who recommended specific exercises to deal with potential muscle issues. Aleysha continued her training, but had to stop suddenly when one day she could not move. During the years that followed, Aleysha attended a pain clinic and had various scans and treatments. Although she saw physio therapists, chiropractors, acupuncturists and osteopaths, she was not given a diagnosis or a cause for her pain. After contracting malaria during an overseas university field trip, her back pain worsened further, and she started experiencing different infections and pain in other parts of her body. In 2018, Aleysha went to her GP after looking into her symptoms. She asked whether she could have fibromyalgia, which her GP agreed was a possibility. Aleysha was referred to a rheumatologist who ruled out a series of other conditions before telling her that it’s probably fibromyalgia Aleysha was then given a leaflet and recommended to talk to her GP about medication, which she found frustrating. Aleysha has also experienced other health issues such as depression and irritable bowel syndrome.
Aleysha takes some medication for her fibromyalgia symptoms and is currently on the waiting list for a different pain clinic. She regularly sees her GP who she trusts and finds very supportive. However, Aleysha feels her GP is waiting for specialist guidance on how best to manage fibromyalgia, which has not been forthcoming. She pays privately for regular appointments with a physiotherapist, which she finds helpful. She has also benefitted from seeing a counsellor, though only receives a limited number of sessions on the NHS. Aleysha thinks that there is a lack of information and practical support for people with fibromyalgia regarding the impact of the condition on their emotional and mental wellbeing.
Aleysha’s whole life has been negatively impacted by fibromyalgia. She is no longer able to take part in competitive sports, and has also had to adjust her career and family aspirations because of her ongoing health difficulties. Whilst she has had to take a break from university because of her health, Aleysha has since returned to her studies. A disability support officer has helped to make the courses more accessible for her. Over time, Aleysha has read many research papers and books about fibromyalgia. She has learned how best to self-manage her various symptoms, and has found that establishing a routine helps her to function better during the day. Aleysha has friends she can rely o and feels well supported by her wife, who she feels helps her better cope with her symptoms. She also enjoys walking her dog and feels comforted when having a difficult day.
Aleysha’s advice to other people with fibromyalgia would be to try to build a support network around you. She encourages others to be pro-active and to try to understand the condition as best as you can.
After the interview, Aleysha was seen at the pain clinic after 21 months on the waiting list. She found the appointment not helpfuland has been discharged from the pain clinic. Aleysha has also been able to function better during the day, without needing to take a nap during the day,which she credits to a change in medication.