Alexis

Age at interview: 24

Age at diagnosis: 23

Brief Outline:

After first experiencing pain in 2018, Alexis was diagnosed with fibromyalgia by a rheumatologist. Her advice to other people with fibromyalgia would be to ask health professionals about support groups when being diagnosed.

Background:

Alexis is 24 and single. She lives with her parents. Alexis works part-time as a church choir singer.  Ethnicity: White English

More about me...

Alexis first started getting symptoms of fibromyalgia around November 2018. While walking to the bus stop, she experienced suddenly a “really sharp searing pain” in her legs. She was on steroids at the time for an auto-immune condition, and she describes how her GP originally thought that this medication was the cause of the pain and suggested to reduce the steroids.

After a couple of months, despite reducing her steroid medication, Alexis’s pain started spreading to her hands and arms, and she could no longer pick up and play the instrument she was studying at college at the time. As a result of these symptoms, she had to drop out of her studies and move back home with her parents. Over the next few months, Alexis’s pain got worse and she was prescribed codeine, which she didn’t find helpful for the pain and caused “horrible” side effects. After several consultations, her GP started to suspect that she could have rheumatoid arthritis.

Eventually after some x-rays and blood tests Alexis describes how she was told by the GP practice receptionist that the results had come back as “normal, no issues, you’re fine”. She remembers thinking at the time “Okay, but I’m not fine…a 24-year-old should not be on such a high dose of codeine and still in pain every day”. After more visits to her GP, Alexis was referred to see a rheumatologist who she found “brilliant” and was the first doctor where she didn’t feel like there was “a time pressure on the appointment.” After a discussion and a physical examination, Alexis was diagnosed with fibromyalgia.

In the past, Alexis attended a self-management course (which included exercises and a discussion group). Although finding the course helpful, the other participants tended to be older and she felt that it was aimed more at people who had had fibromyalgia for some time. Alexis found she couldn’t relate to some of the issues discussed. She hopes that future courses can include topics such as loss of career or impact on romantic relationships for younger people.

Alexis is currently on anti-depressants for her fibromyalgia and mental health issues which she feels is helpful. Alexis has also found counselling on the NHS very useful. As these sessions are limited, she worries about her ability to afford this kind of therapy privately in the future.

Alexis feels she lost her dream job of playing her instrument professionally and worries how her future will look like. Sometimes she finds it challenging to communicate to others what it’s like to have fibromyalgia. However, she describes using the “spoon theory” (a way of assessing and managing your daily energy levels) as helpful.

Alexis feels well supported by her family and close friends. Further, talking to others with the condition has been “a complete life saver” for her because “…they understand…they’ve been through it.” Her advice to other people with fibromyalgia would be “… if you’re not told about support groups ask about them…you will develop a huge amount of strength and resilience”.

Alexis describes experiencing very sudden and sharp pain in her legs while walking to the bus stop.

Yeah, so I first started getting, when I first started getting symptoms, I didn’t realise that they were symptoms of fibromyalgia. I first started getting them in around November of 2018. And, actually the first morning I got them I remember vividly, I was walking to the, I was walking to a bus stop to, go to college and, I just got this really sharp searing pain in my legs and I could barely walk, I had no idea what it was and it was really scary.

And I called my GP and, what they said to me is because, I was on steroid treatment at the time for a different, condition that I have, I have an autoimmune condition, so they suspected that it was because of the steroids, muscle pain is a very side effect of the steroids that I was on at the time, so they suspected it was that. Their suggestion was to drink some tonic water and that should help ease it, and I was just repeatedly told you know, “As you start to reduce the steroids the pain will get better and things will get back to normal”.

So this happened for a few months and then, around January of 2019 it started, spreading, it moved into my arms and my hands, so it wasn’t just in my legs. And, at the time I was studying, for a music performance degree, I was studying viola, and it got to the point where I couldn’t even pick my instrument up and play for sort of five minutes, I couldn’t do it. So, because of that I had to, drop out of my degree, I had to come back, I moved back home.

But again you know, we thought it was just the steroids. All the doctors that I was seeing thought it was just the steroids and that things would get better once I’d reduced that and come off them.

So, we then started reducing the steroids more quickly because you know, we wanted to get rid of the muscle pain as quickly as we could. I noticed that the pain wasn’t getting any better, if anything it was getting worse. So I think this is around May or June 2019, I went back to my GP and I just said, “Look, this pain is getting worse, it’s in my joints, it’s in my muscles you know”, I can’t do basic things like make a cup of tea because the kettle was too heavy for me to pick up and you know, at 23/24 years old that’s not normal [laughs].

Alexis was pleased to get a specialist appointment really quickly, but was upset it was then delayed because the specialist thought she wasn’t urgent enough.

So, I went back to the GP then and, he went through all the results and he just said, “Well I’m going to have to refer you to, rheumatology because the you know, this is beyond what a GP can diagnose”, he said you know, the x-rays have ruled out rheumatoid arthritis because there was no damage to my joints, they were all fine. He said it could be, lupus because my blood test for lupus had come back as a positive result, but he also said you know, “Because you have other autoimmune conditions it could be that that’s your normal and not you’ve got lupus”.

So he sent an urgent referral to rheumatology. I heard back from them within a couple of days and so then I’d got an appointment, I think it was two or three weeks later, which I thought was great you know, [laughs] it’s hard to get an appointment sometimes so I was very happy that it was that quick.

And then a week before the appointment, the original appointment, I got a letter to say that my appointment had been moved back by about three months, with no explanation as to why. So we, we rang, we tried to get hold of the consultant’s secretary or somebody in the department to just try and get an answer as to why it had been moved. We were then informed that, the consultant had looked at my notes and had decided that I didn’t need an urgent referral and therefore I could wait several months.

So we then went back to the GP and just said that, “I don’t know why they’ve changed it, I don’t know why they feel they can change it without even having met [me]” and you know, “Clearly this is urgent, I can’t do basic every day things”. And he then said you know, “I’ll write to them again, I’ll do what I can” you know, he was great actually, really, really good I you know, I felt like he really listened and understood what was going on.

Alexis says that in some ways her diagnosis was a relief, but it was still a lot to take in and process.

In some ways it was a relief because it was a, a confirmation that my symptoms were very real and that there was a reason for them and, in some ways it made a lot of sense because you know, we’d ruled out rheumatoid arthritis and lupus, and from my own research and reading before I’d got the diagnosis that was something that had come up and I’d thought, “Oh, yeah, maybe it is that”.

And I think after that feeling had gone it, again, a feeling of you know, your life’s going to have to change, a lot of things are going to be different now, you’re going to be in pain every day for example, and for me it was a bit of a double hit because a year earlier I’d had the diagnosis of the autoimmune liver condition and it you know, I’d just got my head around that one and dealing with that and then you know, it, it was a second wave, it’s like you’ve just dealt with the first wave and things are just about okay but then another one comes crashing in. And yeah, you, me personally I wasn’t strong enough to deal with that as effectively because I’d already had the first hit.

Alexis wishes she had been given more than just a leaflet when she was diagnosed. She thinks that being signposted to support groups would’ve been helpful.

I think this is really important. I think that you know, when I was first diagnosed if I’d had something where I’d seen other people talk about it, people who lived with it and who say you know, “These are your options, some people find this helpful, some people find that helpful, and there are support groups out there you know”, if I’d immediately been given that at the point of diagnosis, that would’ve taken a load off me because that’s you know, that’s something that you know, I wouldn’t have had to go and find myself.

And I think that’s so important when you get a diagnosis is for doctors to say you know, “Yes, you have this thing, but loads of other people have this thing, here are support groups you can access. Here are things that you may find useful, here’s your starting point”. Whereas what I got was, “Here’s the diagnosis, here’s a leaflet about the condition and you’re on your own basically”, and you know, that’s terrifying. Getting a diagnosis in itself is terrifying, but then coupled with you’ve got to figure everything out yourself, where do you even start? It’s you know, I feel like it’s so important for doctors to say you know, “You might not want to do everything now, but here are some stuff that you may find helpful”.

Alexis thinks that the number of counselling sessions offered on the NHS is not enough.

I’ve been having some counselling recently. I was on the waiting list for a very long time but I have got, had started some sessions now. And I think through that I’ve figured out that, a lot of it also ties into, things that have happened in my past you know, things like you know, self-esteem and self-belief and all of that kind of stuff. But I’ve also realised from that that I need, much longer term support than the NHS can offer, which you know, you think, “I need to do this thing and I want to do this thing”, but then you have that reminder of, “You can’t get this through the NHS, how are you going to pay for all of this?” and you know, again, you’re having to do that question of you know, “How, how am I, am I earning enough to get the support and”, sorry, spend money on the things that I need you know.

There’s definitely a worry of I’m going to get to a point financially where I think well you know, I’m having to choose between necessities for you know, basic every day necessities that everyone needs and this longer term support that I need and you know, how do you choose between those two?

That sounds like a very difficult one. So does it mean now you have just a you know, a certain amount of counselling sessions you know, approved by the NHS you know, like which you can take?

Yes. So, initially they offer you, six sessions, they can be extended to eight if, you and your, counsellor think that that’s appropriate, but that’s it, that’s all they can offer on that, which I think you know, if you go in there and you’ve got maybe one or maybe two things that have been weighing on your mind and you want some help working through I think that could be enough.

But I think anybody going in with a chronic illness, that’s, it’s not enough, it you know, because things change with time as well you know, if you go in there and you have eight sessions at the beginning of your diagnosis and early on you know, you have different worries and concerns from then six months, a year, two years later. I just don’t feel like there’s enough support for mental health with people with chronic illnesses, I feel like that’s not a discussion that is being had and being taken seriously.

Some days Alexis finds it impossible to do tasks like washing her hair.

I mean in all honesty, everything, everything has changed you know, even things you know, people say like, “Oh, you’re tired, go and lie down”, it’s like well yeah, I can lie down but you know, if I lie in one position for too long that’s painful or I get stiff, so you know, I have to make sure that I’m moving around enough to you know, prevent that from happening and you know, people say, “Oh, you know, go and try you know, just lay in the garden for a bit” or you know, “Go and watch some TV”, and I’m thinking, “Yeah, but sometimes you know, pressing the buttons on the TV remote if my hand’s painful that day, that’s difficult to do”.

You know it’s, it’s affected everything, and I think people, people think about the bigger things that it affects, but they don’t always think about the everyday things of walking up and down stairs or you know, lifting up the kettle or you know, I’m going to sit and watch the TV for a couple of hours you know, it’s those things that I think people don’t always think about and when you say to somebody, “I struggle with this”, their immediate reaction, “What? What do you mean you struggle with that, that’s such a basic thing?”

I haven’t yet, but, I know definitely that, washing my hair is quite a difficult task but I deliberately keep my hair short to try and minimise that, and there are definitely days when dry shampoo is absolutely necessary because there’s you know, there’s some days where and you know, even on the days where you feel like I can wash my hair, some days you know, I’ll go in and I’ll do it and I’ll be fine and no issues, other days I go and do it and I need a two hour nap afterwards and you just never know what you’re going to get.

Newly diagnosed Alexis felt it was too early to identify triggers that would result in ‘flares.’

I think in terms of the topics that we were talking about and what was discussed, a lot of it to me at least felt like it was aimed at people who had known that they’d had fibromyalgia for a number of years and kind of knew what their triggers were that could trigger a flare or like knew what it, knew more what it was like for them. Whereas with me I was sort of sat there thinking like, “I’ve only known I’ve had this for four months you know, I have no idea what my triggers are, I’m still trying to work all of that out”.

Alexis feels she lost out on her dream job of playing her instrument professionally.

And it yeah, I had to completely re-think my entire career really because the instrument that I’d been studying at college for nearly six years suddenly I couldn’t play anymore and, yeah, I had to completely re-think about what I was going to do and where I was going to be living and it was a massive change to my life, and it still is, [laughs] I’m still figuring out a lot of stuff, you know. In some ways thinking about the future is very scary because I have no idea if this thing is going to get worse, if it’s going to stay the same, if symptoms be, get more manageable you know, it’s just.

Yeah, so, for about as long as I can remember I’ve always thought that I was going to have a career as a orchestral musician you know, it wasn’t ever for me a choice of, “This is what I want to do”, it was a, “I can’t imagine my life without that”, so that was always something that I worked towards, and.

And, yeah, I you know, I kept plugging away at that you know, I think I was lucky, I got into my first choice of, music college that I went to and you know, I got to study in [another city], I had some fantastic opportunities there, I was building up, a network and, they call it a portfolio career where like you do some teaching, you do some playing, you do some weddings and you do lots of different things that encompasses one career.

And I had a sort of you know, not a very specific plan, but I had a kind of, “I’m going to spend a few years teaching, playing, meeting more people, going to auditions and you know, hopefully one day I’ll audition for a world class orchestra and I’ll get in and that’ll be my life, I’ll play with them, I’ll go on tours with them”, and that was something that I really wanted, that was dream job for me.

And then suddenly getting to the point where I can’t even play my instrument for more than a couple of minutes at a time now, I still can’t do that, it’s been over a year now, that’s really tough and you know, I see the case of my instrument and I see all the music that I’d been learning and it, you have to grieve it, it’s a loss and I think people don’t always think about that when they think of grief, they think of you know, somebody that you know has, passed away, and I think that’s you know. I still am, but I had to grieve for the life that I thought I was going to have and I had to realise that that’s no longer an option.

Alexis describes meeting other people with fibromyalgia on her self-management course as being “a complete life-saver.”

And having that support group has been really necessary and helpful for me because you know, if I’m having a day where things are just overwhelming or I’m tried of explaining something, I can go to those people and just you know, it’s an outlet and just saying you know, “Oh, for goodness sake, this has happened again”, and they get it, and we all do support and care about each other and you know, yeah, we’re there in the bad times but we also celebrate the successes that we’ve had, so it can be, “Oh you know, I’ve been trying this treatment”, or you know, “This type of massage or something and it’s been really helpful for me”. So that for me has been hugely helpful.

And having this kind of support of people you know, who have you know, who have fibromyalgia and as you say, understand without you needing to explain really, what does it mean to you to have this kind of support in your life?

I don’t think I’d cope without it in all honesty, I think before I met the people at the, the self-management course I felt so alone. And it wasn’t even that you know, I, I knew people, a couple of people in my life who have fibromyalgia, but they’re not, they weren’t people that I was especially close to or felt like I, or you know, they were also dealing with a lot at the time or you know, I didn’t want to go to them and be like, “Here’s all of my problems as well as what you’re dealing with”.

So I think before that point I was really struggling with getting my head around it and yeah, I, but there were a lot of bad mental health days I think before I met those people. So yeah, actually having, having met people in person and having discussions about what it’s like yeah, a complete life saver for me, it’s really necessary.

Alexis says that it’s important to treat someone with fibromyalgia as a human being and not just a name on a piece of paper.

I think the biggest thing is that we’re not just a name on a piece of paper or you know, a time of appointment, we are a human being the same as you are. And you know, if, if the roles were reversed, if this was you coming in as a patient, or if it was you know, one of your children or your parents or you know, somebody that you really love, what would you want to hear from a doctor?

Alexis talks about the value of support groups. If you’re not told about support groups, ask about them.

I think the first thing I would say is if you’re, if you’re not told about support groups ask about them. Unfortunately you might have to do a lot of your own research to find them, but once you do find them things will be a lot easier because you’ll have people to talk to and you will realise that a lot of other people experience what you are experiencing right now.

And yeah, find, find your support group, find the people that are always going to be there for you that will always make the time to listen to you because you know, you will need them, but also you will develop a huge amount of strength and resilience that a lot of other people don’t have the opportunity to, and that is something that will be hugely important and also many, many other people will admire that and wish they had that. So yes, it’s difficult, but there are some good things that come with it.

Alexis spoke about the difference they felt when they finally saw a doctor and it “didn’t feel like there was a time pressure on the appointment.”

I think she was I think the first doctor I saw that it didn’t feel like there was a time pressure on the appointment. You know, I felt like I went in and you know, she asked me my concerns and, I said to her, I said, “Well like you know, I’ve got a list of notes, like is it okay if I give it to you?” and she said, “Yes, of course, that’s helpful you know, let’s go through it, let’s talk about what’s on there, let’s make sure we’ve covered everything that you wanted to talk about”.

And I really felt that she listened to me and that she understood and that she wanted to hear my whole perspective before giving me any of her opinions, where I feel like some doctors that I’ve seen in the past you know, I go in and I say, “This is my concern”, and they immediately try to say you know, “This is what it is and this’ll fix it and don’t worry about it, and out the door because I’ve got other patients that I need to see”. Whereas with her it was you know, “No, what’s bothering you, tell me everything and then we’ll figure it out together”.

Alexis would have also liked more proactive follow up from her GP, especially around pain management options.

I think with hindsight looking back it would’ve been good of them to say you know, “We’d like to book an appointment to discuss treatment options”, because you know, I had mentioned several times that the codeine wasn’t helping with the pain.

So I feel like at that point they could’ve said to me, “Come back and we’ll consider whether, pain management options”, even if that was just a you know, “We need to talk to your consultant and see what is safe for you to take, but once we’ve done that we’ll talk to you again and we’ll see what the other options are”. You know I, because of that I had to wait until I had an appointment with my liver consultant to go and ask him which ones were okay, and then you know, the next step was go and see the GP and tell them that the consultant had said, “These are okay so can we try one of them?” but, then of course the Coronavirus happened, [laughs] so that’s, yeah, that’s been put on pause for the moment but yeah, that’s next step I think for me. But again, that’s something that I will have to organise myself.

How does it make you feel that you feel like you have to organise that all yourself?

I mean in some ways it does make sense to me because you know, things change with time, you adapt to things you, you know, and not everybody with fibromyalgia is going to need the same level of care and the same level of treatment. So in some ways to me it makes sense to say you know, “If you need us come and see us, but if we don’t hear anything from you we’ll assume things are okay”.

But I think what really is still bugging me is that when the rheumatologist signed me off and sent me back to the GP I didn’t hear anything about a follow up appointment from that. And I think that’s something that’s really important if …

I know some people who have fibromyalgia they still see rheumatology and they stick with that rather than the GP, but I think if you, if you are referred back to your GP, at that point they should want to see you again and talk about it.