Lyn
Lyn started experiencing pain around the age of 50 and was diagnosed with fibromyalgia by her GP. She would like to receive more advice from her doctors and thinks that she would benefit from a review around her treatment and support needs.
Lyn is 68 and married with an adult child. She works part-time as a street patrol crosser (“lollipop lady”) at the local school. Ethnicity: White British.
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Lyn started experiencing a very sore back in 2000. She spent some time visiting an osteopath who suggested that she go back to her GP to get tested for fibromyalgia. Although originally thinking her symptoms were related to the menopause, after blood tests, she was told she had fibromyalgia. Lyn was relieved that a name had finally been attached to her symptoms and that she wasn’t just “going mad”. She was given an NHS leaflet about fibromyalgia and feels she was “left to get on with it.”
Over the years, Lyn has experienced pain, sweating, tiredness, sleeplessness and “brain fogs”. She has been back and forwards to her local GP practice. Because she is rarely given appointments with the same doctor, she has to explain her experiences each time. Though she finds the doctors “very nice”, she feels that they can’t help her because they don’t have enough knowledge on fibromyalgia. She is frustrated that she is only offered drugs (e.g. amitriptyline, gabapentin) as a way to manage her condition. Working as a “lollipop lady”, she feels these treatments would be far too strong and make her tired and “zombiefied”. In Lyn’s eyes, being offered drugs is a way to get her “away from their doorstep”. She is currently prescribed vitamin D, paracetamol (which she takes when she feels she needs to) and fluoxetine. She also takes a herbal remedy, and pays privately to see both a physiotherapist and a massage therapist which she finds helpful. Lyn sees no alternative and continues to get these treatments despite the financial impact.
Lyn still finds her symptoms debilitating. She feels “lost” and that she is “not getting anywhere” after 18 years. Sometimes Lyn finds it hard to know whether a particular symptom is related to her fibromyalgia or not, and she doesn’t know whether to believe the GPs when they say “It’s just your fibro.” Lyn would ideally like health professionals to review her condition as she feels that since she was diagnosed there must have been some progress in terms of treatment and support.
Lyn engaged with two online discussion groups in the past, although she no longer participates. She found the discussions depressing due to their sole focus on symptoms and medications. Lyn would like to attend a local support group where she could exchange experiences and share ideas on how to cope better with fibromyalgia with others. However, she lives in a rural area and would have to travel to the nearest city which is too difficult given her fibromyalgia.
Lyn has told others about her diagnosis but feels frustrated that some people are not always as understanding and accommodating as they could be, as it’s an “unseen” illness. She appreciates her husband’s patience and ongoing support which makes a difference to her. Lyn also values her job, which means ‘everything’ to her. She loves working with the children. Lyn feels that she is a ‘different person’ during this time because “the kids come first” and not the pain.
Lyn can’t tell from one day to the next what she’ll feel like and sometimes has to take days off work to recharge her batteries.
Lyn can’t tell from one day to the next what she’ll feel like and sometimes has to take days off work to recharge her batteries.
The headmistress at the school knows I’ve got it because sometimes if I get a fibro flare then I have to take one or two days off to completely recharge the batteries. But, otherwise it’s never spoken about, it’s, I don’t think they know what to ask, and, so it just doesn’t get spoken about.
And when you need you know, those one or two days off to just you know, look after yourself, is that, accepted or how do they deal with that?
They get somebody else to do the job, much to the kids’ disgust [laughs] “Where you been Lyn?” [laughs] yeah. And I, generally if I have to do that I just completely sleep that two days, or day and a half anyway, it’s just complete and utter exhaustion, it takes the feet from you I’m afraid.
But it’s usually just complete exhaustion, on the sofa, fleece over the top of me and out for the count until I’ve recharged the batteries. But touch wood it’s not often that that happens, but it does happen.
And you can’t, you can’t tell from one day to the other what you’re going to feel like because they’re all different. I mean I could get a whole week’s, a good week and then you could get a fortnight of being miserable, it’s swings and roundabouts and you can’t foretell which way it’s going to go, which is the annoying thing.
Lyn pays privately to see two physiotherapists – she thinks they’ve helped a lot.
Lyn pays privately to see two physiotherapists – she thinks they’ve helped a lot.
I go to a lady in [a nearby town] that gives me a deep tissue massage, and she breaks down the knots in my body. I also go to another physiotherapist in the town and she works on the muscles in my bottom and my lower back.
I get more, I get more sense out of these people. Especially the, the one in the town, she’s a Polish girl and she, I’ve not long been going to her and, she’s come up with a few tips here and a few tips there, and, “You will do this. You will do this”, and, yeah, she’s helped quite a lot. In fact I get more advice from her than I would from the doctor, but she’s not a doctor.
What kind of difference does that make to you know, giving, getting these tips and this kind of advice and …
She’s …
… she’s pushing you know, “You’re doing this”?
I’m always pleased with myself because I get to the stage where I think, “Is it”, I spend far too much time sitting in this chair, so for me to go to the girl, it’s like an outing, a painful outing, but she’s so nice and she’s so funny and she makes me feel good, and she helps me.
And, although I’m paying for this service, I would gladly pay a doctor for that service, which we don’t get, a tablet will fix everything when the doctor, but it doesn’t, it doesn’t fix us, it doesn’t even, doesn’t even look at it.
How did you find out about that you know, like okay, maybe physiotherapy is something? Did somebody tell you about it you know, to try out physiotherapy or did you find out in a different way, or?
Well for a lot, a way, way back, going back a few years, well they would put you to the, the physiotherapy department at the health centre, and of course [laughs] we all know that’s a big waste of time, and it was a big waste of time. So when they got fed up with me they gave me a cortisone jab and said, “That’ll sort it” [laughs] and then that was it, [waving right hand in a goodbye gesture] “Bye” [laughs].
So that was, that’s when I thought, “Och, I’m going to have to take matters in my own hand here”.
Lyn said that she doesn’t want to depend on medication and become “zombiefied.”
Lyn said that she doesn’t want to depend on medication and become “zombiefied.”
They want, as I, they wanted to put me on various, tablets that would’ve zombiefied me, which, I mean amitriptyline, who wants amitriptyline? That’s a wicked heavy duty drug. Gabapentin was the same, and I just didn’t take them, I wouldn’t, I wouldn’t accept them, so I have to get on with it with the milder drugs, and hope [laughs] good luck [laughs].
So for the fibromyalgia I have got fluoxetine, vitamin D and Rescue Remedy that’s all I, and paracetamol as I need it, when I need it. They wanted me to take paracetamol every day three times a day and I wouldn’t do it, and I, I’ll take it when I need it and I try not to.
Lyn takes a herbal remedy, and pays privately to see a massage therapist which she finds helpful, despite the financial impact.
Lyn takes a herbal remedy, and pays privately to see a massage therapist which she finds helpful, despite the financial impact.
It has to be done. The, the one that I go once a month, she’s the deep tissue massage, and that gets rid of all the lumps that can be that big up the back of my shoulders and my neck, and it’s like popping bubble wrap when she gets her fingers, and it’s sore, my god, it’s sore (laughs], but I always feel better after it, I feel that the lumps have gone, the knotted muscles have gone. They come back, but for a day or two I’m a lot better.
It’s the same with the one that I go in the town and, she concentrates on the lower bit. In, in here it’s terrible sore in all this muscle, in here and the back and that, she gets her elbow in there and gives it a good old going over. And I do, oh, sorry, I do, feel better after I’ve seen her as well.
And although it’s not curing I would, I’ve often thought, “I can’t afford this, I’m going to stop them”, but I’m frightened to stop them in case I would feel worse if I didn’t go, whereas I’m going and I’m sort of, we’re, I’m going to these people and that’s the only thing I know what to do with, for myself, and I’m paying to have it done.
Lynn says that when she slurs her words, it can appear like she’s been drinking alcohol, when she hasn’t.
Lynn says that when she slurs her words, it can appear like she’s been drinking alcohol, when she hasn’t.
I find I can’t do the things that I want to do that I used to do, the sweating, the tiredness, the, sometimes the brain fogs, they are debilitating and I really don’t know what to do about it.
There’s the, depending on my mood, the slurring of the words, which sometimes makes you look as if you’re, been on the bottle [laughs].
Sometimes if I get over exciting at these things I start slurring. I don’t drink alcohol, that’s a long time gone, but I, you get this like a fibro fog where you’re, you’re out of your comfort zone and, and, “Oh, I don’t want to be here, I want to be at home, I want to be slumming it, I don’t want to be dressed up”, and I don’t like being like that either, but it’s horrible.
Lynn finds it hard to know whether a particular symptom is related to her fibromyalgia or not.
Lynn finds it hard to know whether a particular symptom is related to her fibromyalgia or not.
What’s, what is fibro and what is not fibro. And I’ve been to the doctor many times because I felt so awful and they say, “It’s just your fibro”. But they’re only looking at me, how do they know it’s just my fibro when I’m sitting at home worried sick that it’s not fibro, that it’s something else and they’re just chalking it up as that? It’s, it’s scary, very scary, very worrying.
Sometimes, that’s a good question, sometimes I think, “Oh, my goodness I’m, what is this pain?” sometimes I think it’s a heart attack and then only to find out that I’ve got wind trapped round my body that you have to move to get rid of it, which is not very elegant sometimes [laughs].
Lyn feels like a different person when she’s working because “the kids come first” and not the pain.
Lyn feels like a different person when she’s working because “the kids come first” and not the pain.
And the pain, it doesn’t matter, it does not matter, the kids come first, the pain doesn’t come first. And to look at me down there I’m a completely different person.
But by the end of the day, put the lollipop away, I’m dragging my feet because I’ve given it my all, and that’s the same every day, it doesn’t change, every day’s the same there, unless it’s summer time and I’m a bit more nimble.
I learnt over the years to, what I can do and what I can’t do, and I just live with it, get on with it. It doesn’t affect my work, I hope. I don’t think it affects my work, and nobody has said anything to the contrary, so I’m hoping I got away with that [laughs].
What does it mean for you having this job or this work?
Everything, I love it, I love those kids, those kids keep me young, those kids keep me sane [laughs]. I’m outside, I’m virtually my own boss because I’ve nobody else but me out there and the kids, but, yeah, I love it, I do love it.
I took it on as a, a stopgap in between jobs because I’d had, I had major surgery and, I thought, “This’ll do me for six months”, and I’ve been there 40 years [laughs], must be doing something right. So yeah, I do love it, I do love it, I love those bairns, they just make my day.
Lyn says she can’t do some of the things she used to do like dancing.
Lyn says she can’t do some of the things she used to do like dancing.
But I feel as though I’m not getting anywhere, it’s very depressing, it leaves me a lot of the time in tears. I find I can’t do the things that I want to do that I used to do, the sweating, the tiredness, the, sometimes the brain fogs, they are debilitating and I really don’t know what to do about it. I just wish it would go away.
I’ve got this, my granddaughter’s wedding on Saturday and I, honestly I’m dreading it because I’m either going to be standing too long or sitting too long. And if anybody asks me to dance I’ll die [laughs] because I can’t do it anymore.
So I mean it’s all these little things that gang up on you when you’ve got fibro and kick you in the teeth, that just can’t do these things anymore.