Lisa

Age at interview: 40

Age at diagnosis: 35

Brief Outline:

Lisa was diagnosed with fibromyalgia in 2014 after experiencing pain for several years. Her advice to other people with fibromyalgia would be to stay strong as over time you will learn to manage it better.

Background:

Lisa is 40, single and a full-time administrator. Ethnicity: White Scottish

More about me...

About six years ago, Lisa started experiencing leg and wrist pain. She had several GP appointments and was referred to different hospital departments before she was finally diagnosed with fibromyalgia in 2014. When she was diagnosed, Lisa already had a suspicion that she might have fibromyalgia after researching her symptoms on the internet and recognising similar symptoms to her aunt, who had been diagnosed many years before with the same condition. After her diagnosis, Lisa was keen to learn how to live with fibromyalgia. She decided that she was going to try to remain as independent as possible and not let it take over her life.

 

Lisa’s fibromyalgia symptoms have changed over time, and she now experiences mostly pain, fatigue and memory difficulties. She has struggled with anxiety in the last year and is not sure whether this is because of some stressful life events or due to the condition. Lisa feels that many GPs do not know much about fibromyalgia and offer little help except for repeatedly offering painkillers, which don’t improve her pain. She would find it helpful if the NHS could either provide or support people to access alternative ways to manage their symptoms, such as swimming passes or massages.

 

Lisa thinks other people do not understand fibromyalgia and the impact it has “because you can’t see it.” Before developing symptoms herself, she remembers finding it difficult to understand her aunt’s pain from the disease. Being able to share experiences with people who know what it means to live with the condition makes a big difference to Lisa. She has joined two Facebook groups for people with fibromyalgia and values the support from others in a similar situation.

 

Fibromyalgia has changed Lisa’s life in many ways, including her outlook on life. She continues to work, even though she struggles some days. She has changed jobs and describes her new employer as more supportive than her previous ones. Moving jobs has had a negative financial impact but improved her quality of life. Lisa has two friends who are very understanding and support her with tasks like shopping and giving her lifts. Though she appreciates their help, she sometimes feels frustrated by needing this kind of support. She tries to maintain a good social life and keeps up with activities she enjoys such as going to football games, concerts or the cinema.

 

Lisa’s advice to other people with fibromyalgia would be to stay strong as over time you will learn to manage it better.

Lisa already had a suspicion that she might have fibromyalgia after researching her symptoms on the internet and recognising similar symptoms to her aunt.

So eventually I was diagnosed by the communicable diseases. I kind of had a, an idea in my head that I maybe did have fibromyalgia from doing my own research, and obviously my aunt has had fibromyalgia for many years, although hers is different to mines, a lot of our symptoms were the same.

I always remember being younger, you, I would be sitting next to my aunt and she would just go, “Ow”, and get this pain somewhere in her body and we all used to laugh at her, we used to say, “What’s wrong with you now?” However, I am now that person who could be sitting watching the TV and get the “Ow” pain wherever it may be.

When I was diagnosed, it was hard. I think before I was diagnosed, I struggled with it because nobody could tell me what was wrong with me and it was really, really difficult. I remember lying in bed some nights crying because I didn’t know which part of my body was the sorest, couldn’t get comfortable you know, nobody could help me, nobody could tell me what was wrong, I had to wait a long time for various different appointments and things like that.

Anyway, around 18 months later after the initial sore knee, sore wrist thing I got the diagnosis from a very nice professor at the hospital who worked at the communicable diseases. He basically said, “Yeah, you, you have”, he just confirmed I guess what I probably already knew.

Lisa wishes there was something more that could help her “in this day and age.”

I mean I think GPs’ knowledge, every GP’s different obviously, but I’m yet to meet one that you know, can provide me with any kind of help that, well that would help me. My auntie feels the same, she just, she just doesn’t bother even going about it either anymore because, she’s on different medication and things than I am, but she feels the same.

Can you think about something what they could offer to make that difference to your life?

[Laughs] If they could even just offer a medication that works, except amitriptyline, because they all seem to give, maybe I’m wrong, I’m not a GP, but they all offer that, so that must be in GP school “If somebody comes with fibromyalgia, offer them amitrip”, I tried it you know, it didn’t work for me, but there’s got to be something more than that, got to be [laughs], in this day and age, you know what I mean, all this research and universities, there’s got to be something else.

Lisa would find it helpful if the NHS could either provide or support people to access alternative ways to manage their symptoms, such as swimming passes or massages.

I’ve tried cupping, you know the cups that you put on the back? That really helped me. I was going on holiday last year and I went to her every week for maybe ten weeks or something and I felt great after that. But again, it’s so much money. I just wanted to be as fit as possible for, I went to Florida and I you know, although the heat did help me, but walking about Florida and Disney and things, you want to be as physically able as you can, so I went to her for a lot of massages, I had plenty money then, a lot of massages and, and I did the cupping and it really made me feel, not better, yes, better, but I wasn’t cured, but it, it made me feel a bit better.

Well you’re paying for it are you, the private ones. I would say, because I didn’t, none of the treatment I got on the NHS, whether it was medicine, physio, acupuncture, made any difference to me. The sports therapist, massage therapist you know, I went to him twice maybe and my back felt a bit better. There’s just not that same stuff on the, I mean you couldn’t go to the NHS and get cupping or you know, that kind of thing, which is a shame.

I think the NHS need to have something, whether it’s, I know the physio, the physio doesn’t do massage or, or anything like that, but maybe that would help fibro people you know, once a month even, just something. There’s nothing. You know, the acupuncture, it was good to try it.

I was at, I was at the point where I was willing to try anything, so I, I did the acupuncture but again, it didn’t work. It might’ve worked for somebody but it, I mean somebody else, but it, it didn’t work for me.

This, someone once told me that there was a hydrotherapy pool in [the city] somewhere, I’ve no idea where it is, but even access to that you know, or a pass to the swimming so you could use the jacuzzi or, or 50% off a massage, or, just a little bit of something to help people.

Lisa has struggled with anxiety in the last year and is not sure whether this is because of some stressful life events or because of her fibromyalgia.

I do feel maybe more in the last year or so it’s maybe started to affect me mentally as well as physically. It was always just physical for me, it never really affects, like in the summer time I had to go on to some, tablets to help with anxiety because I was really suffering bad anxiety. I’ve changed jobs a few times this years, I’ve, I seem to have lost some of my confidence, and I, I don’t feel like I did, I did this time last year. So I don’t know if that’s me that’s changed or it’s my fibro that’s changed me, but you know, I’m not the person that I used to be.

But again, I don’t know if the anxiety was me or if it was my fibro, I, I don’t know because I’ve never experienced it before. So I’ve, I went on to these, beta blockers, in July I think it was and I’ve, I’ve still got them now, but they’ve really helped me, I feel, I feel more myself. I don’t plan to stay on them forever, but it was one of those things where I think because it was so alien to me I thought, “Oh, hang on a minute, this is not right, I need to go see somebody”. I’m quite like that, if I’ve got a, if I’ve got something wrong I would see about it you know.