Kath
Kath started to experience pains in 2013 and was diagnosed with fibromyalgia by her GP. She feels she would benefit from a more detailed examination and specialist advice on how to self-manage her fibromyalgia.
Kath is 65 and divorced. She has two adult children. Kath works part-time as a box office assistant. Ethnicity: White Scottish
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Kath started experiencing lots of pain mainly in her hands and feet around 2013. During an initial visit to her GP, she was examined and diagnosed with fibromyalgia. Kath has only ever been prescribed painkillers for her fibromyalgia and feels like “No one’s ever really investigated it at all, right up until this day”. When she was first diagnosed, Kath was given a leaflet half printed on a sheet of paper and half printed on her prescription note. She describes how this communicated to her at the time what she felt was a lack of care. “I just think…I’d be worth a little more than that”.
Kath describes having better or worse days in terms of her pain. She didn’t know at first that her memory difficulties might be connected to her fibromyalgia. She also suffers from an impinged shoulder (where a tendon inside your shoulder rubs or catches on nearby tissue and bone). Although she has had injections and physiotherapy for this problem, the treatments haven’t really helped.
Kath’s GP surgery only offers phone consultations which she finds challenging because “they’re not looking at you or examining you” and has spoken with multiple different GPs. Although she saw one GP who she found to be understanding and “interested,” she wishes that the other health professionals she had spoken to could have demonstrated more empathy with her condition. Kath feels she would benefit from a more detailed examination and specialist advice on how to self-manage her fibromyalgia.
Although Kath is an independent person who doesn’t like to rely on others, sometimes she has to ask family and work colleagues to help with, for example, lifting heavy objects, or opening bottles. She is also frustrated that she can’t help out more with looking after her grandchildren. However, Kath describes being determined not to let fibromyalgia negatively impact on her ability to see her friends. She thinks that it’s important not to let fibromyalgia take over your life.
Kath’s advice to others with fibromyalgia would be to try and seek out a health professional who “understands how you are”.
Kath describes experiencing lots of pain mainly in her hands and feet to the extent where she couldn’t lift her shopping items to put in carrier bags at the supermarket.
Kath describes experiencing lots of pain mainly in her hands and feet to the extent where she couldn’t lift her shopping items to put in carrier bags at the supermarket.
Okay. Well, back, I think it was 2013, I was experiencing lots of pain… mainly my hands and my feet and other parts of my body. To a degree that if I went shopping I couldn’t physically take the [gestures with hand] you know in a shop, the conveyor belt when your shopping comes along, trying to pick it up and put it in the bags, I just couldn’t use my hands properly and it was really painful. So I went to see my GP and she did a little bit of examination and she more or less just said, “You’ve got fibromyalgia,” and she printed out a sheet with information which has got the date on it, that’s why I know the date I went. And she prescribed me some painkillers and basically, apart from going back and forth with pain, that’s all I’ve ever had is painkillers.
When Kath was first diagnosed she describes being given a leaflet half printed on a sheet of paper and half printed on her prescription note.
When Kath was first diagnosed she describes being given a leaflet half printed on a sheet of paper and half printed on her prescription note.
I think that would have probably helped, just to say, “Right, okay, this is what it is, this is what you’ll experience,” or whatever. But it was just – I’ll let you see afterwards what they printed out for me.
So that leaflet you were given when you read that through, what did you think about that?
Well, it was 2013 so it was quite a while ago. It wasn’t a leaflet, it was just something they printed off the internet. But it was half-printed on a sheet and half-printed on a prescription piece of paper. You know, I just think, “Hmm, I’d be worth a little bit more than that,” but…
Kath describes struggling to put her seatbelt on.
Kath describes struggling to put her seatbelt on.
Sometimes driving, I feel, you know, [gestures with hand] trying to get the seatbelt on, trying to open the door, in parking spaces… I’m not classed as disabled but I need the door right open so that it clicks open, but sometimes there’s cars there, you can’t do it and you’ve got to slither your way out. And I find that really painful, and the same going in. And then if I do get it [gestures with hand] pushed right open, then I can’t reach it to close it [laughs].
It’s this back and forth…
Yeah. And my feet are sore but I’m still managing okay with driving with my feet. Putting the seatbelt on sometimes, if someone’s with me, they fasten it for me. Because it’s just [gestures with hand] bringing it down, this arm I’m okay and I can get it.
Kath wondered if her “terrible” memory problems were a sign of dementia. She finds her symptoms worrying, but finds that humour helps her to cope.
Kath wondered if her “terrible” memory problems were a sign of dementia. She finds her symptoms worrying, but finds that humour helps her to cope.
Yeah, terrible memory problems. I didn’t know that was part of the fibromyalgia thing, but I do struggle [shaking head]. It’s just… unbelievably struggle with words and names and I think, “Oh, god, I’m not getting dementia next,” you know? I thought that was an age thing; I didn’t know it was fibromyalgia. But I do have a lot of that.
So was it you know, as you say, struggling with remembering names and getting the words out, is there any other kind of other observations you have around where your memory is a bit… you know, affected? Or that’s the two main things?
That’s the two main things. Sometimes I think I’m going somewhere and I think, “How do I get there again?” and I’ve really got to find hard to search… and I get there, but I think ‘ah’… I really, really struggle with that.
And you say, you know, in family you make a joke about it, so how do you feel about, you know, making jokes about that within you know, that kind of family setting?
I don’t mind. I think I take the joke and sometimes I make a joke myself about it but I wouldn’t like it to get any worse than it is. I can watch a whole television programme and [gestures with hand] I wouldn’t be able to tell you a person’s name in the programme. That’s nearly every day, and that does worry me a bit.
Kath struggles with memory problems and worries that she’ll lose her job.
Kath struggles with memory problems and worries that she’ll lose her job.
I don’t know. I do not at all, you know. I mean, there was one day I couldn’t remember my boss’ name. He’d asked me to ask a customer to send him an email which ticks in his name, and I says, “I can’t remember your name,” and he said, “It’s [first name].” I said, “Okay, [first name], I can’t remember your last name either,” you know? That was very, very embarrassing. With work it doesn’t matter to me so much, but the family, we make a joke about it and that, but at work, I think, “Oh god, they’re going to get rid of me because I keep forgetting things.”