Rosie

Age at interview: 54

Brief Outline:

Rosie experienced pain and migraines among other issues for many years before she was diagnosed with fibromyalgia. She believes in a strong mind-body connection and that alternative therapies can help in the management of fibromyalgia symptoms.

Background:

Rosie is 54 and is married with an adult daughter. Rosie works as an interior planner. Ethnicity: White Scottish

More about me...

Rosie first noticed physical reactions to various stresses in her life when she was 10 or 11 years old, including pains in her hands and legs. Later, she developed migraines and chest pains, and also experienced an episode of depression. Around 2000, a locum GP diagnosed her with fibromyalgia who was confident that this was the cause of her symptoms. Having a diagnosis helped Rosie to feel less scared as her symptoms made sense, and she no longer felt like a “hypochondriac”.

After the diagnosis, Rosie did not receive any healthcare advice or support, but searched for trustworthy information about fibromyalgia. She found various books and became interested in finding out more about herself and in developing a better understanding of her symptoms. She believes in a strong mind-body connection and that alternative therapies can help people to cope better with fibromyalgia. She is not keen to take medication due to the side effects she experienced when younger.

Rosie has tried various alternative therapies to find out what works for her. Since seeing an alternative therapist 18 months ago, Rosie says that she has “never felt better” and no longer experiences debilitating headaches. This has made the biggest difference in her life. Rosie feels that she can now cope better with the other symptoms and has her fibromyalgia “under control” in a way. She has found that talking with her therapist in a safe space has helped her to reflect on her life experiences. She has learnt how to voice her feelings and to be ok not doing everything. Whilst Rosie has to pay privately for this service, she values this support because she feels heard and sees the benefit for her health. However, Rosie is aware that these costs could be a financial barrier, preventing some people from accessing better support.

Rosie has seen GPs with opposing views on fibromyalgia though her GP thinks it is a real condition. She does not visit the GP often because she does not view herself as “ill”, and benefits from other kinds of support. Although Rosie appreciates that GPs are under-resourced and time-restricted, she emphasises that they should pay more attention to the emotional aspects of fibromyalgia and allow people space to talk about stress and the broader issues in their lives.

Rosie’s life has been negatively impacted by fibromyalgia. Rosie is self-employed, and feels unable to work for an employer due to the unpredictability of her symptoms and not wanting to let others down. Living remotely is another difficulty for Rosie, as it can be quite isolating and more difficult to find like-minded peers. She also relies on a car for transport, but finds driving can make her feel sore.

Rosie enjoys gardening and doing DIY around the house. She also practices yoga. Rosie tries to ensure that she listens to her body, takes time to relax and is “kind“ to herself. She feels well supported by her husband and enjoys a great relationship with her daughter. Her advice to other people with fibromyalgia would be to get to know yourself and trust that you know what is right for your body.

Rosie describes how she can manage and control some of her fibromyalgia symptoms by trying to let go of stress.

Yeah, my headaches in the last year, that’s the biggest change. The biggest change. My chest pain as well flares up when I am stressed and it just kind of holds me and keeps me almost paralysed and I can’t open my chest out, it’s just like everything constricts. But the calmer I am and the less stressed, the better all these things are.

It’s like I hold the tension and then it translates into pain and then it translates into almost chronic pain. I can’t seem to let it go, but if I let it go here, mentally and emotionally, I can almost control it. I have slight Raynaud’s and, like, if I’m upset or angry or sad or whatever, I get pins and needles in my hands. So that’s quite new, that’s the last few years, three or four years, it’s almost like my body is trying to tell me something. Once I kind of work it out and go, “You’re not going to do that,” it’ll move somewhere else.

No, I think that once I mentally understand where they came from and what they’re doing, they quite often stop, but maybe rise somewhere else, so the pattern would be that they move, but they dissipate, they get less. And I think that quite a few symptoms have actually stopped waving at me, deal with me, this is what it is, because I know now, I know to search them out and maybe to find why and deal with it then myself.

Rosie first noticed there was something wrong or different when she was about 10 or 11 years old.

And can I start in retrospect, when I look back, not knowing what it was, but now realising that it was probably the fibromyalgia, a long time before I knew it?

Absolutely. Absolutely.

Okay. Okay. Well, I’d say that I first realised that there was something wrong or different when I was about 10 or 11, and I was a very sensitive child, and everything seemed to have an impact on me. And I had growing pains in my legs, I had pins and needles in my hands, and any noise or any argument or any disruption in my home life made me freeze, and subsequently feel pain or something strange in my hands or legs. And I had bad headaches from quite a young age all the time. Certainly weekly, and over my lifetime, almost daily, which I now see in retrospect was tension. Just tension and holding things in. So that started about that age.

Rosie’s pain used to get really bad when she got stressed. She feels if she let’s go mentally and emotionally she can “almost control it.”

Yeah, my headaches in the last year, that’s the biggest change. The biggest change. My chest pain as well flares up when I am stressed and it just kind of holds me and keeps me almost paralysed and I can’t open my chest out, it’s just like everything constricts. But the calmer I am and the less stressed, the better all these things are.

It’s like I hold the tension and then it translates into pain and then it translates into almost chronic pain. I can’t seem to let it go, but if I let it go here, mentally and emotionally, I can almost control it. I have slight Raynaud’s and, like, if I’m upset or angry or sad or whatever, I get pins and needles in my hands. So that’s quite new, that’s the last few years, three or four years, it’s almost like my body is trying to tell me something. Once I kind of work it out and go, “You’re not going to do that,” it’ll move somewhere else.

No, I think that once I mentally understand where they came from and what they’re doing, they quite often stop, but maybe rise somewhere else, so the pattern would be that they move, but they dissipate, they get less. And I think that quite a few symptoms have actually stopped waving at me, deal with me, this is what it is, because I know now, I know to search them out and maybe to find why and deal with it then myself.

Rosie is self-employed and feels unable to work for an employer due to the unpredictability of her symptoms and not wanting to let others down.

I’ve always just worked for myself and not even… I wouldn’t even describe it as a job. I do up buildings and I’ve done that no, I didn’t know if it was the fibromyalgia or just the stress of doing up, like, working in [the city], driving back and forth. I can’t say for sure, I actually don’t know, but it hasn’t helped and the headaches and the sore neck and the fact that I get quite stressed, holding onto a steering wheel. And I also get bad hips sitting in the car, which have never been diagnosed as anything other than just part of this. It doesn’t help, it really doesn’t help. So work-wise, I’ve always felt I can’t actually go and work for someone because I’ll let them down. Because I never know when I’m going to have two days flat out, I just always feel I wouldn’t be very trustworthy. But I work very hard for myself when I can, and I just choose to work that way. So it has impacted, I think, socially and work-wise.