Audra

After experiencing pain for about two and a half years, Audra was diagnosed with fibromyalgia in 2018. Though she still tries to find out how best to manage the condition, Audra has found alternative therapies and staying as active as possible helpful.

Audra started feeling less fit and increasingly sor about two and a half years ago. She was initially treated for osteoarthritis in her shoulders, and for menopausal symptoms. Audra realised something was not righ when the pain did not stop and travelled to other parts of her body. After a period of time, Audra was referred to the local hospital where she was assessed by a doctor and diagnosed with fibromyalgia. She was advised to quit smoking and have a less busy lifestyle.

Audra was referred to a pain clinic by her GP, but eight months on is still waiting for her appointment. She is unsure what to expect and how helpful it will be, because she was not told much about it when she was referred. Audra has not been offered any other support in the meantime. Though she has been prescribed medication, Audra prefers alternative strategies to cope with her fibromyalgia symptoms. While massages made her symptoms worse, Audra found that Reiki has been useful. She would recommend people to try alternative remedies rather than simply relying on pain medication for their symptoms. She also thinks people with fibromyalgia could benefit from some dedicated support by a nurse or health visitor trained in chronic pain. This support could be provided online or by phone.

Fibromyalgia has impacted Audra’s life in many ways. Audra runs her own cleaning business which involves working long hours. However, she now feels a lot of pain and exhaustion after work. She also has had to start delegating certain tasks, such as making beds or mopping the floor, to her staff. Further, it has been more difficult for Audra to participate in family activities such as playing with her grandchildren; she can no longer do things like going quad biking with them. Being unable to pull her weigh as much as others or to do things she enjoyed in the past makes her frustrated and disappointed, though she tries not to get irritated by it. Audra is also worried that her symptoms could deteriorate in the future. Because of this, she wants to stay as active as possible.

Although Audra describes fibromyalgia as frustrating hel, she does not want it to take over her life. Audra takes her mind off the pain by keeping busy, working and making time for relaxing activities, such as reading and watching television. Walking her new dog also helps her to keep moving; even though she knows she will be sore afterwards, she feels it is worthwhile. Thinking about her family helps Audra to keep a positive mental attitude. She appreciates their support, and enjoys spending time with them. She values having people to talk to, especially her daughters, and a friend who also has fibromyalgia. Her partner is also very understanding.

Audra’s advice to other people with fibromyalgia would be don’t let it take over your life

Audra says that having fibromyalgia has affected her relationship. Having sex can result in a flare up of her pain symptoms.

Age at interview 53

Age at diagnosis 51

My relationship, it affects that quite a lot. Sexual contact with someonehaving sex, it’s not difficult actually having sex, but the next day, you know, you’re actually exercising. So I’m not assuming it’s only sex, I’m assuming it’s every kind of exercise, like I said to you with the walking and my ankles getting sore, it’s exactly the same. And I imagine for a lot of people, I’ve read a lot on that Facebook site about that, about people and their partners or their husbands, because they don’t want to have sex so much because they hurt.

Yeah, that’s not a great thing. I’ve got to say that my partner is great, he doesn’t ever moan about it or groan about it, which is really good. But it is an absolute thought, what you’re going to feel like the next day if you have sex the night before, so I try and make it that I’ve not got work the next day.

That’s a terrible thing to say, but it’s true. It is true, and I can understand howI imagine both men and women, you know, they’ve got a partnership, they’ve had a loving relationship and then all of a sudden, that goes. It must be really difficult, really difficult. So that, yeah, that impacts a lot on my life there. Yeah, a lot.

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Audra said that something like a MacMillan nurse service would be helpful someone who you can phone, like you can with cancer.

Age at interview 53

Age at diagnosis 51

It might be good if there wasI think it’s a bit unfair to ask the GP to answer all these things because I doubt very much if a GPI know that lots of GPs don’t think fibromyalgia is a thing, and I know a few who do, so the ones that are maybe sympathetic to the cause are good, however it might be a good idea if there was somewhere that you could go to ask the questions, you know? I don’t know. Something like McMillan nurses, you can phone them and ask them about cancer. Maybe the same kind of thing, because I know that fibromyalgia is not the only [nodding] chronic pain illness; there’s lots of them. But finding somebody to ask about them, yeah, really difficult, but it would be good. It would be good to, you know, to ask people, What is a pain clinic? What are they going to do for me? Is it me that’s going to help them or them that’s going to help me

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Audra wishes she could talk to someone who was knowledgeable and understanding about fibromyalgia.

Age at interview 53

Age at diagnosis 51

It might be good if there wasI think it’s a bit unfair to ask the GP to answer all these things because I doubt very much if a GPI know that lots of GPs don’t think fibromyalgia is a thing, and I know a few who do, so the ones that are maybe sympathetic to the cause are good, however it might be a good idea if there was somewhere that you could go to ask the questions, you know? I don’t know. Something like McMillan nurses, you can phone them and ask them about cancer. Maybe the same kind of thing, because I know that fibromyalgia is not the only chronic pain illness; there’s lots of them. But finding somebody to ask about them, yeah, really difficult, but it would be good. It would be good to, you know, to ask people, What is a pain clinic? What are they going to do for me? Is it me that’s going to help them or them that’s going to help me

I think having a person that is not a doctor, not a GP, even if it’s just a nurse or someone that you can phone for information on what you have. Or, well, as well as information onso they’ve referred me to a pain clinic, what is that? You know? How is that going to help me and why do I have to go to that before I sit and talk to you about what we’re going to do for the future? So yeah, all of that. I thinkbut maybe not a GP because I know that they’re busy and I know that there’s people that are seriously ill that need them more than I do, so maybe like a health visitor, but a person that can deal with chronic pain. [nodding] Yeah, good idea. There is, I’m sure, hundreds, thousands of people that would be really grateful for someone to talk to about that.

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While massages made Audra’s symptoms worse, Audra found that Reiki has been useful. She would recommend people to try alternative remedies rather than simply relying on pain medication for their symptoms.

Age at interview 53

Age at diagnosis 51

So as I said at the moment, I justI’m at a stage where I’m not quite sure what I want to do. I don’t know if I want to – I know I don’t want to go down the line of taking a million painkillers. I actually tried alternative therapy last weekend, reiki. It was fabulous. Absolutely fabulous, I loved it, and I think that I probably will go down that line of maybe trying that every couple of weeks or something. It was, it was like lying in a bath of lovely warm water, and there was no pain for, like, maybe half an hour. It was really good. I don’t want to be a person that has to pop lots and lots and lots of pills.

My oldest daughter has a friend that has just learned to do it, so she’s kind of using me as a guinea pig. She has her full trainingbut it’s a thing that I’d never done before. I think I’mI feel I’m quite a spiritual person and I’m really surprised that I never tried it before, so she offered to, you know, give me a free session and see what I thought. And yeah, I thought it was quiteit was quite amazing. I have tried massage as well but I found that makes it much worse. Much worse. I have heard people saying, Oh, it was great because, you know, everything was moved around and I felt great but no, I had the massage and within two hours I was nearly crying because I was so sore after it. So, andI haven’t tried anything else. Just pushing through it, basically.

So you know, alternative treatments, I would say to anybody to try that reiki, it was amazing, it really was. And I think it’s the first time in about two and a half years that I’ve actually lain and been somewhere else, you know? She’s fabulous, the girl that did it. I would imagine they’re all about the same. But if you don’t try it, you’ll never know if it’s going to work, so try it. Rather than the tablets, I would definitely try it.

When you say she was fabulous, what makes you say that?

She was warm and kind and it was all about me, you know? That hour was for me. Absolutely for me, whateveryou know, there was nobody else there in the room, there was nobody else there in the world, to be honest. And it was just peace, it was really good. Really good. And I have to say, I never paid her for it. But it you know, I would have been happy to pay her for it, for that little time that was all my very own. It was good.

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Audra feels that she doesn’t have the energy to give her children and grandchildren what she wants to give them.

Age at interview 53

Age at diagnosis 51

I don’t want to go down the road of taking 20 pills a day for pain because I want to know when it gets worse, so I don’t want to do myself any more damage. I feelI don’t even know how I feel. I feel upset that I am where I am. I’m 53, I’ve always been fit and healthy, I have four children ranging from 31 to 19, five grandchildren, the oldest one is 12, the youngest one is three, and I feel that I don’t have the energy to give them what I want to give them. I don’t have, you know, we go on holiday, we go on days out, and I’m the one that’s holding everybody back because I get so tired so quickly and I can’t walk for very long.

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Audra describes the tender point’ assessment that she got which helped her doctor to diagnose fibromyalgia.

Age at interview 53

Age at diagnosis 51

So when I went to the hospital, I can’t even remember which clinic they sent me to. Anyway, I met a doctor, a lady. She asked me and she read about my symptoms where I’d been to see my doctor, and she sat me on the bed and she felt my ankles and my knees, and I think there was 20 different parts of my body, it was a kind of, [using finger] Does that hurt? Does that hurt? Does that hurt and honestly, within ten minutes, that’s what she said, You have fibromyalgia and asked me some questions about my lifestyle, which I’ve just said is really busy. Asked me to calm down my lifestyle, you know, take it easy a bit, take a step back and get other people to do this and other people to do that. And, yeah, that wasn’t where I want to be either. So it was a lot of[scratching head] it was a lot of poking and prodding, basically, to give me the answer of, That’s what you have, fibromyalgia

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When Audra was first diagnosed she worried about how her symptoms might deteriorate.

Age at interview 53

Age at diagnosis 51

So eventually, the doctor put me to the local hospital and I seen a doctor there, it took her five minutes. She touched certain parts of my body and told me I had fibromyalgia. I have hadI have a friend who has fibromyalgia that I’ve known for about six years, she has it really, really bad and I had never heard of it before. She talked to me about it, she was a person that was fit, healthy, had a job, ended up in her late 30s having to leave her job, and now she can’t walk properly, she has special aids in her house, she must drive an automatic car, disability stickers, walks with sticks, etc., etc. That worries me a lot. It worries me in case that’s where I’m going to be. She’s younger than me, yeah, I worry that that’s where I’m going to be.

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