Debbie

Debbie started noticing symptoms about two years ago which gradually got worse over several months. In 2019, she was diagnosed. She has a very supportive friend who also has fibromyalgia, and she finds her local support group incredibly helpful.

Debbie started noticing symptoms about two years ago that gradually got worse over several months – sore legs, fatigue, numbness, headaches, blurred vision, memory, and sleeping problems. She decided to visit her GP as she was concerned that her symptoms might be a sign of Multiple Sclerosis (MS).

Debbie remembers that the waiting list to be seen by an NHS rheumatologist in her area was 86 weeks, and so she decided to arrange to see a rheumatologist privately. The rheumatologist did some checks and said that if her GP could rule out connective tissue disorder then it was definitely fibromyalgi. Debbie describes her diagnosis as sort of like a relie in that it confirmed to her that this is definitely not just in my hea.

The rheumatologist prescribed Debbie tablets that she says her GP had been reluctant to give her, and describes at the time being given a one page print out but no information about support groups – I didn’t know where to tur. After three months, she eventually discovered a local support group which she finds very informative.

Painkillers help with the pain Debbie experiences although they don’t take away the pain – she describes the pain and fatigue she experiences as excruciatin and sometimes spends days in bed as she can’t get u. Debbie describes how the Coronavirus lockdown made her symptoms worse, including her depression.

Debbie says she struggles to get support from her family as they don’t understand i. However, since her diagnosis she has developed a close friendship with another person with fibromyalgia who she finds a really good support. Debbie works as a care assistant and says her work has also been supportive by adapting her duties to make them less strenuous. Further, Debbie’s dog helps her to stay more active and feel better.

Debbie has recently changed her GP practice and finds them more sympathetic when dealing with her fibromyalgia.

Her advice to other people with fibromyalgia would be to research as much as you can and find a very, very good support group

Debbie works as a care assistant and says her work has been supportive by adapting her duties to make them less strenuous.

Age at interview 30

Age at diagnosis 29

Yes, so I had to tell my boss it was, it was quite hard to do, my boss is a lovely lady, but she can be quite scary too [laughs]. So I was quite worried that I was going to lose my job because of it I was aware that my health could deteriorate and from the symptoms getting worse to getting my diagnosis that had already deteriorated and I was quite concerned that I was going to be in a wheelchair by the time I was 30, which was last November. So, I had the discussion with her and she just sort of, she was actually quite good about it, she just asked me what, what whether I could continue to work what, what would work for me basically. and I just continued on as normal for a while and then I asked her to cut me down to part time hours and then recently there she just sent me a random message to say, How do you feel about going to socials I’m a carer.

Sorry, I’m a carer in the community so social care is just basically where I go and I take them out for coffee, or shopping, sit at home, have a chat, do jigsaws, watch TV, and it’s just it involves light housework so it’s, in my previous, not job, previous sort of run I was in a different area and I would have to do personal care, and a lot of housework and up and down, you know, to do the feet and in and out of houses and stuff, whereas now I don’t have to do that.

Embed Print Transcript

Debbie’s support group switched to Zoom during the COVID-19 pandemic. It was good to keep in touch but she missed the social and mental health support of face-to-face meetings.

Age at interview 30

Age at diagnosis 29

Yeah, because obviously there was nothing opened the, the group that I go to in [the city] obviously had to be cancelled and that’s where I get most of my support for fibro since that though we have moved to Zoom, which is so much easier because then we go on and we’ll have a chat on there. So, the meetings once a month and they still have the specialists who come on and they join in the Zooms, so it’s really, it’s really quite good that it’s still there. But it took a while to get that set up. and obviously not being able to see people or go out and have a coffee, go on to my best friend’s house, I wasn’t able to do that, you know, and all those wee things are all for mental health and when I wasn’t able to do it, then my mental health declined, which meant I spent more time in bed again, not just from the ME or for the fibro but also from the depression [touches mouth] yeah and not being able to go and get out in the fresh air and go for a walk, I didn’t want to do it.

Embed Print Transcript