Rachel

Age at interview: 31

Age at diagnosis: 29

Brief Outline:

After experiencing pain for about two years, Rachel was diagnosed with fibromyalgia in 2019. She attended a 12-week physiotherapy programme which she found useful. She thinks that sometimes one-on-one sessions may be better to discuss certain concerns.

Background:

Rachel is 31 and married. She works part-time as a senior research assistant. Ethnicity: White English

More about me...

Rachel started struggling with issues like insomnia and pains in her legs and hips around 2017. She went to her GP who referred her for Cognitive Behavioural Therapy (CBT) which seemed to help with the “mental side of things” and also with “sleep hygiene” [having both a bedroom environment and daily routines that promote good sleep]. However, Rachel continued to experience pains and was still “really restless” at night.

Although Rachel’s insomnia seemed to settle a bit over time, she still wasn’t feeling quite right. She started experiencing ringing and pain in her ears, and jaw pain. Her GP referred her to an audiologist for tests, although the results showed up nothing. At the time she just thought “Okay, there’s nothing wrong with me so I’ll keep going as best I can”.

After a while Rachel started experiencing itchy legs along with odd rashes and bruising. She also described her situation as being like “on the verge of getting a really bad cold or flu” and generally feeling “ropey.” Although Rachel wondered whether her mental health had declined related to her past depression, she felt “stable” and not depressed at the time. So, she concluded that “This isn’t depression, this is something more”. Rachel went back to her GP who she found very understanding. After considering her symptoms, her GP suggested that it could be fibromyalgia. After some tests with a rheumatologist, Rachel was diagnosed in 2019.

The rheumatologist referred Rachel to a 12-week physiotherapy programme which included peer support sessions. Although she found the sessions useful, Rachel didn’t feel that she fitted in well because people in the group seemed to have more severe symptoms or were older than her and experienced different issues. For example, others might be concerned about their retirement whereas she was interested to find out how fibromyalgia could affect her ability to cope with a pregnancy and young family. Rachel feels that one-on-one sessions may be more useful than group meetings to discuss certain questions. Since the programme, she hasn’t had much interaction with health professionals.

Rachel asked to be seen by the occupational health team at her work. Various adaptations were put in place for her such as a new chair for more comfort. Being able to have additional rest breaks and flexible working hours enable Rachel to cope better at work.

Rachel describes being “quite practical” about managing her fibromyalgia, feeling that “it’s not a death sentence…it’s not something …you can’t deal with…”. The lockdown due to the COVID-19 pandemic has been partly challenging for her. However, she has found some of the strategies she used for her depression in the past helpful (for example, mindfulness exercises). Walking her dog and doing some adjusted yoga and stretching also help her to stay active.

Rachel’s advice to others with fibromyalgia would be to be “open about how you’re feeling with those around you…don’t expect anyone to fully understand how you feel. And to ask for help when you need it”.

Rachel was really pleased that her GP was very supportive and thorough.

So my GP was really good, actually. She was really understanding, she listened to everything and she said, ‘Well, I don’t know whether you’ve heard of fibromyalgia but it sounds to me, given that you’ve had all of the tests and there’s nothing significantly wrong with you in terms of your sort of biological side of things, it might be that it’s fibromyalgia,’ but she said to me, she said, ‘I can’t make the diagnosis so we need to refer you on to a rheumatologist.’

So it was in March of 2019, I went to see a rheumatologist at the local hospital. And she again took a full case history, she looked at my sort of my medical records, asked me about my lifestyle, and then she did a test as well where she looked at all of my joints and my and sort of the pressure points as well on my back, so she had a feel of different areas on my upper back, my lower back and my wrists. And she noticed that there were certain trigger points that would make me almost flinch, and I wouldn’t say it was because it was an excruciating pain but it just felt really uncomfortable with her applying even the lightest of pressure.

And I was explaining to her as well that I got weird symptoms where I felt like, particularly my forearms, felt that they were on fire, or just that I’d got a really bad carpet burn or sunburn on my arms. You know, it was sort of if… if my husband would invite me in for a cuddle or something, I’d almost say, ‘No, please don’t touch me, it’s really uncomfortable.’ So she sort of had a good feel through everything, felt my joints, and she said, ‘Well, I don’t think there’s any form of arthritis that’s actually there, but it does suggest that yes, I think the diagnosis of fibromyalgia is what’s there.’

Rachel suspected she might have fibromyalgia, but wanted her GP to suggest this to her first.

I’m not too sure how I felt about it, really. I think I was still trying to process it because I think, maybe in the back of my mind, I had heard about fibromyalgia before, and I almost felt that I didn’t want to suggest it to my GP. I wanted my GP to suggest it to me because I had heard that some people, particularly with other things like ME and Chronic Fatigue Syndrome and things like that have said, ‘Oh, I’ve heard in the past that oh GPs don’t believe in it, it doesn’t exist,’ you know? There’s that horrible cliché of ‘It’s all in your head.’ So I thought, ‘Well, I’ll just see what the GP comes up with rather than me making suggestions as to what I think it could be,’ which sounds a bit strange [laughs] but that’s how I work. So, I thought, ‘I’ll see what the professional thinks first.’ And when she did say it to me, I don’t know… I didn’t feel any kind of relief, that, yes, here’s a, here’s a name as to what it is, or I didn’t feel sad because that’s what it is and I know that it can be a really chronic, crippling illness for some people.

I think for me, I was quite practical about it, I thought, ‘Okay, here’s the name, let’s have a look and see how it can be managed and let’s try and see what can be done moving forward.’ I don’t think I really felt anything extreme, but it was just kind of a bit of a, ‘Oh, okay, what next?’

How did you feel about this point, you know, like, as you say, you didn’t really want to bring it up because you had heard these stories, and then actually having your GP actually bringing it up, what did you think about that?

I was, I was quite happy, actually. I mean, I think she’s a relatively young GP so I don’t know whether it’s something that they’re – maybe they’ve got a newer school of thought, they’re not you know I’m making massive assumptions here [laughs]. Older GPs may not necessarily believe in it as much, but I was quite I think I felt quite reassured, actually, that she sat there and … I think it’s more the fact that she didn’t think that I was just coming for loads of appointments by going, ‘Oh, I don’t feel very well,’ you know, ‘I need sorting out.’ I think she took me quite seriously. And the fact that she had… you know, I remember when she first looked at my blood test results, she spent quite a long time wondering why, you know, she was looking at everything and thinking, ‘Well, no, it’s clear that you’re not feeling well, but then the biology is not saying what’s wrong with you.’

So I think the fact that she did take quite a long timeto look into what was going on and then came up with the fibromyalgia as a legitimate illness, felt quite, quite reassuring.

Rachel values the time her GP gives her during consultations: “she wasn’t sat at the computer screen, tapping away and not engaging…”

Again, it made a huge, a huge difference. I know your standard appointments are meant to be ten minutes, which is, particularly, when it is about trying to explain how you feel, and trying to explain how you feel when the symptoms are not understood as well, so it’s not like going, ‘Oh, I’ve got a temperature and a sore throat,’ ‘Okay, this is a viral infection,’ you know, ‘Give it five to seven days.’ You’re trying to explain pain and feeling the way that you do when pain is seen as, like, a perception. It’s, it’s very unique to each person as to how you feel. So I think the fact that she did give me the time and she wasn’t sat at the computer screen, tapping away and not engaging with me, you know, she actually sat, looked at me and talked to me about it first, then said, ‘Right, well, let’s look at your blood test results,’ you know, I think she almost seemed quite confused by some of the results that were coming up, to the point that I think she wanted to get a book down from the shelf and [laughs] have a look through.

Rachel found that CBT was helpful for her insomnia.

So I think it was about 2017 I started really struggling with issues like insomnia, I was sleeping really badly, I found I was really restless at night so I wasn’t quite sure what was going on with that, so I went to my doctor and I said, ‘Look, I’m really struggling with my sleep, I’ve got quite bad pain in my legs, I’m not quite sure what’s going on. And I did have a history – I’ve had a very long-term history with depression as well, so I got diagnosed with depression back in around 2006 or 2007, I think it was. So they referred me on to try some CBT for insomnia, which I did, and it seemed to help sort of from the mental side of things, with things like sleep hygiene and stuff. But I was still finding that I was really restless at night and my legs were causing the main problem. I had quite bad hip pain as well.

Rachel describes her brain fog as being like a “mass of cotton wool”

Whereas yeah I’ve got you know, I’ve got someone, my friend with ME or my friend with Lyme Disease, yes, they’re different conditions, but in terms of the… I think it’s like, even explaining brain fog, they’re just like, ‘What on earth is brain fog?’ You’re just a bit tired or you know oh you can’t concentrate, you know? It’s like when we watch telly, my husband and I, I can’t remember anything that’s happened on TV. I’m like, ‘Who’s that? What’s going on?’ and he’s like, ‘You’re not concentrating,’ I said, ‘I am, I just can’t remember, I just haven’t got a clue.’ And again, they don’t… you know, he doesn’t get what brain fog is.

[gestures at head] Sometimes it’s just like a mass of cotton wool and you haven’t got a clue, and yes, you can giggle about it, but then it gets quite frustrating as well, whereas if I say to my friends that have experience of that, they’re just like, ‘Oh, man, I know exactly how you feel,’ and then you just think, ‘You know what? [points to head] [points to head] It isn’t all in my head, other people have it as well,’ so it’s again, it’s nice to have that.

Rachel started experiencing itchy legs along with odd rashes and bruising.

But I went back to the GP and I said, ‘Look, I’m just still not feeling right, I’m feeling really tired, I’m feeling really achy,’ I was sometimes getting quite odd rashes on my legs as well, so weird bruising or just that my legs would get really itchy and I would itchy my legs, and then it would come up with like a bruise, yeah, it looked like a bruise on my legs. And I just said, ‘I just don’t feel right.’ And I think because I’d had depression for a long time as well, I was thinking, ‘Maybe it’s my mental health that’s not very good.’ But I thought, actually, my mental health had been really good and it’s been stable for a really long time. There was nothing really significant going on in my life, you know, I’d just got married, I was you know settling down into a really nice way of working and things like that, so there was nothing to make me feel depressed. I said, ‘This isn’t depression, this is something more.’

Rachel says she can tell when it’s depression she’s feeling rather than her fibromyalgia.

I don’t think I’ve had any problems with it, but I think I’m quite lucky in that my research or my – my job is around mental health. I think where I’ve had depression for quite a long time and from sort of, yeah, around the age of 18, 19, I’ve sort of noticed that my moods have never been great. It’s almost like before the fibromyalgia came along, I’d had enough time to sort out the depression, so I’d had counselling, I’d had CBT, and I did quite a lot of the sort of counselling and therapy side of things before I then made the decision to go onto the antidepressants.

But I think it’s the fact that I was able to say to my doctor, ‘Look, I know I’ve got depression written down and I know it’s on my records,’ but I think as well, I’d managed my depression really quite well and I’d never had any sort of really significant crises or I wasn’t going to the doctor every five minutes to say, ‘My mental health’s not good,’ so I think again, by the GP having that empathy as well, I think she was able to sit there and say, ‘Okay, you know what you’re talking about, you know that it’s not your mental health,’ and it’s the fact as well that I was able to separate out the mental problems.

Another thing is that I had quite significant problems with my concentration, my memory… my memory’s never been brilliant, but… [laughs] you know, ask me what I had for dinner yesterday and I can’t remember. But it’s it was just something… you know, it was the fact that, sort of, the concentration side of things was not because my mood wasn’t good or I was struggling, and then things like leg pain or restless legs or the fact that my skin really hurt to the touch, that’s not a mental health problem as such. So I think that she understood it and I think she gave me the time to be able to explain exactly what was going on as well, so I think that was something that was really helpful.

So I think for me, sort of, the depression side of things, obviously I know there will be… so, the fibromyalgia will make me feel down and then by feeling down, it might make my fibromyalgia worse or more aware of my symptoms, so they, they do sort of mix together. There is you know, there is some overlap. But I think for me, when I do have a depressive episode or if I do have a real drop in my depression, I know that that’s depression compared to the fibromyalgia. When I have a flare-up of my fibromyalgia symptoms, mentally, I’m normally quite good because I want to keep going and doing things, which when I’m depressed, I just want to stop.

Rachel bought a weighted blanket which she uses to help with her restless legs.

I’m trying to think where I heard about the weighted blanket. I don’t think it was on a forum; I think it was something about… I think it might have been my friend [who had moved back home] that sent me a link to it because she suffers from really bad anxiety and I know she sent me a link to say, ‘Oh, have you heard about these weighted blankets? I wonder what they’re like,’ and I think from there on in, I kind of looked into it and the fact that it says, you know, that having the weight on you, is first of all, it’s soothing but then it’s also helpful for you know, helping with muscle pressures.

And I thought, well, you know what, if I’ve got the weight on my legs to stop me kicking out at night, it’s not …you know it can’t be that bad. They are really expensive for what they are, so I spent a lot of time looking around online to see where I could find the cheapest one, and that was from an autism website. So it was, I think they’ve done some research in terms of autistic children to find that it can help them. But I mean, I’m hoping, I’ve had it for nearly a year now, I’ve had it, and it’s still in pretty good, pretty good nick. I don’t use it all the time, but there are some evenings where I just think, ‘You know what, I need that weight on me just to kind of try and help me relax,’ it’s been really good.

Various adaptations were put in place for Rachel such as a new chair for more comfort. Being able to have additional rest breaks and flexible working hours enable her to cope better at work.

So – and then I’ve had I’ve had a referral to our university’s – well, my workplace’s occupational health as well, where they did they had an assessment with me and just talked through how I’m coping or managing with my fibromyalgia with work. And they’ve just managed to put some measures in place for me to be able to manage my work if needed, so I’ve got more flexible working hours, I’ve had a new chair given to me as well, for comfort. I’m given… you know, I’m allowed to have additional rest breaks without being questioned [laughs] as to what I’m doing. And things like being allowed to work from home, or if I need to travel for work, the day before I’m allowed to have a rest day. So little changes like that.

Rachel wanted more information about how having fibromyalgia could affect being able to cope with starting a family.

See, because I’ve tried to think about it, and I mean, maybe because I’ve not spent long enough on the forums or anything like that to be able to find, you know, to find the perfect… the perfect thing that helps, but I think it’s I think for me, the thing that I wanted the most support on was about how it’s affecting people within my age groups, so people that are starting out on their career journey, you know, are starting life with a family.

I mean, I said I’ve got a stepson but it’s something, you know, my husband and I are thinking about having a baby at some point, I’m thinking how on earth am I going to cope with you know my symptoms and having a baby as well, and keeping work and… it’s sort of people that are really starting out on their life journey and having, you know, endless possibilities to then not having those for, you know, to then having to try and think about restricting possibilities and having an opportunity to discuss how… I guess how people have learnt to adapt their life, to fit around it or sort of say, you know, ‘I’ve also had experiences where I’ve been told I need to cut down or do less, this is how I’ve managed it.’

I think the sessions as well were a bit more… I mean, it was helpful for, like, group feedback and sharing of common, you know, common ideas and common feelings, but again, I think because… because it’s my belief that fibro is such a unique condition for people, I think that having individual one-to-one tailored help would be better than having it in a group setting, because I think it gives that person the opportunity to specifically – you know, I could have sat there and gone, ‘I really want to have a family but I’m worried about how pregnancy is going to affect my fibro.’

And I’m sat in a group with people who are pre or post-menopausal that will be sitting there, going, ‘Well, I’ve got grandkids,’ and I’m sitting there, going, you know, it’s not the same. Whereas I think having a one-on-one conversation means that I could sit and talk to someone and say, ‘Look, I’m thinking about having a baby, I don’t know how I’m going to manage,’ and then they could say, ‘Right, well, let’s look at you know, your life as a whole and discuss it in that way.’ So I think that’s where the major, the major, the major difference would be.

Rachel feels that online forums have been really helpful for sharing tips about what to try. However, some of the American sites can suggest that there’s a cure when there’s not.

And then I also found that after a while, a lot of the websites were American, so you would type things in and you’d get a lot of things from America. And it’s you know the typical pictures of, you know, the white male in his white coat, sort of smiling at you, saying, ‘I’m an MD,’ or whatever, and you just think… I don’t know just, I think the imagery of having that person photoshopped onto the webpage and sort of that that kind of… sort of, suggestions for remedies, or the fact that they will say, ‘Here’s a cure for fibromyalgia,’ and you sit there and think, ‘Why are you using the word ‘cure’ when it can’t be?’ you know? For me, the word ‘management’ is better even than ‘treatment’. I think management is kind of what helps.

Rachel felt that she was the youngest person in her group. She also didn’t feel as “unwell” as others and so didn’t really feel like she fitted in.

I think after a while I kind of sat there and I thought, ‘Maybe I’m not actually that ill.’  And I know that my fibromyalgia is quite mild compared to everyone else, but I was sitting there, going, the fact that seeing other people’s experiences is making me feel that I don’t deserve to take part in these things, I think made me feel a little, I think that made me feel worse. So I thought, you know what, I’m not getting anything out of these forums, it’s not having a significant impact on my sort of mental health, but it's not helping me. So I thought, you know what, it’s not something that I feel would be beneficial to me, so I kind of came out of that in terms. I know it really helps some people, but for me, it’s just not… I just didn’t feel like I… I wouldn’t say I didn’t fit in, [shaking head] so no one was specifically there saying, ‘No, you don’t belong here,’ but I just felt, you know what, I don’t think me sharing anything is going to help anyone massively.

And then a similar sort of thing happened with the physio support group thing that I went to at the hospital, so… I think initially about 20… there were about 20 people at the group, and the numbers dwindled as time went on, sort of dropped down a little bit. But I was the youngest person there, I think, probably by about ten or fifteen years. I did have another participant or patient within the group that did say to me, ‘You’re far too young to be here,’ and I was sitting there, going, ‘Uh, well, I don’t believe that fibromyalgia chooses an age for someone to be ill.’

I appreciate that, you know, it’s more common in women and it’s more likely to be, sort of, you know, over a certain age, but the fact that I was sitting there, going, ‘But surely the fact that I’m sitting here,’ you know, ‘I’ve just turned 30 and I’m sitting in this group, surely a little bit of a, oh, blimey, actually this has opened my eyes to the fact that it doesn’t pick and choose who’s going to get it,’ [nodding] would make you feel that you would want to be a bit more kind of inclusive.

So I think that’s one thing that just really stuck out for me, was the fact that it was, ‘Oh, you’re far too young to be here,’ I thought, ‘Well, no I’m not, because if I wasn’t meant to be here, I wouldn’t have been invited in the first place.’  But it was… and I think that kind of set the tone for the group as well. Again, it was it was nice to be there and it was nice for me to… you know, I felt comfortable enough to be able to talk about my experiences and my understanding of things and how it’s impacted me and things like that, but again, it was… people seemed a lot more unwell than I was, you know, there were a lot of people that couldn’t sit down for a really long period of time, they had to keep moving, [gestures with hand] they were using sticks, had to wear dark glasses because they were so hypersensitive to light. I just sat there and again, I felt a bit, you know, not like a fraud but just again, but just again I was sitting there, going, ‘Do I really fit in within this group?’

Rachel felt lucky that she had a GP who was willing to learn with her and who wanted to help “piece the puzzle together.”

I know your standard appointments are meant to be ten minutes, which is, particularly, when it is about trying to explain how you feel, and trying to explain how you feel when the symptoms are not understood as well, so it’s not like going, ‘Oh, I’ve got a temperature and a sore throat,’ ‘Okay, this is a viral infection,’ you know, ‘Give it five to seven days.’ You’re trying to explain pain and feeling the way that you do when pain is seen as, like, a perception. It’s very unique to each person as to how you feel. So I think the fact that she did give me the time and she wasn’t sat at the computer screen, tapping away and not engaging with me, you know, she actually sat, looked at me and talked to me about it first, then said, ‘Right, well, let’s look at your blood test results,’ you know, I think she almost seemed quite confused by some of the results that were coming up, to the point that I think she wanted to get a book down from the shelf and [laughs] have a look through.

So I think it was almost like for her, this was an experience for her to be able to learn as well, or find out more about what was going on. And I think having that sort of shared opportunity to sit and have a chat about things and not be sort of thinking, ‘Well, you know, you’ve had nine and a half minutes, in the next 30 seconds I need to get you out so the next person can come in,’ I think was really helpful.

So I mean, I don’t think it was a ridiculously long appointment, it was probably about 15 minutes, but I didn’t feel that she wanted me out the door. It was almost like she wanted to… you know, I’d given her clues and she wanted to piece the puzzle together for me, and I think it was… well, I don’t know if it was interesting for her, but it was sort of a thing for her to find out as much as it was for me to find out, and I think she wanted to solve it for me as well, so that was really reassuring. So I was really lucky, I’ve [laughs] had a good GP.

Rachel wished she could get access to practical support in learning how to manage – something that could be tailored to her individual life (“it’s not a one-size-fits-all illness”).

Again, it’s… I think having a referral to someone or something about management planning or pacing or learning about… so I think that’s probably part of my motivation as to why I went to occupational health as well, is because I think I’d spent quite a lot of time looking for a resource or something online that would help me with structuring and pacing and managing, sort of, like, even having like a tracking thing for monitoring my symptoms and how I was feeling on particular days, so I’d be quite keen to see if there’s any particular patterns.

So you know, are my symptoms worse when it comes to my time of the month? Or is it when I’ve got particularly stressful things at work? And then having a kind of… maybe keeping a diary in the first few months and then being able to discuss it with someone. Who that someone would be, [laughs] goodness knows, because it’s not up to a clinical psychologist because it’s not, sort of, a mental disorder as it were. And I know GPs aren’t necessarily good at giving management planning. I would say health psychologists, but we’re not recognised in the NHS enough [laughs].

But having almost something where you can sit and you can do some symptom management based on the key symptoms of fibro, you know exactly what they are, being able to track it and then going to someone and saying, ‘Look, this is what I’ve noticed, this is what I’ve found, help,’ you know?

That, that kind of thing. I think that’s probably why I went to occy health, was to say, ‘I need help in planning.’ You know, I can do daily planning and sort of, you know, time management is not a huge issue, but I think it’s then saying, ‘Well, actually…’ or getting someone to look at your plan for the week and then saying, ‘That’s too much, do you think that’s too much?’ And learning tools in, in how to do that, and then sort of thinking, okay, ‘What are my triggers for my symptoms? What, what how do I know when I’ve got a flare-up coming? How do I manage my flare-up?’ So just, just that kind of whole overview as to what, what I should do.

And I think the fact it’s not a one-size-fits-all illness, so you can’t just have a generic piece of, you know, of graph or a table on the internet saying, ‘This is what you should do.’ It should be like, ‘Map it out, track it,’ and things like that. I think I took into my own hands prior to my diagnosis of doing my own symptom tracking, because I think part of me at one point thought it might be ME and not fibromyalgia. Because I think I had a bit more understanding of ME than I did fibro, but then I was like, ‘Oh, actually, no, I’m in pain quite a lot,’ but then that was all through myself and not with help from other people.

Rachel would have liked more follow up after her diagnosis. Someone checking in on her would have been helpful.

I think it would have been nice to have even had just a… I mean, I know that GPs are so stretched and I completely understand that, you know, they’re not sat twiddling their thumbs, thinking, you know, this, that, the other. But I think even receiving a letter back from the rheumatologist and the fact that they’d been discharged back to the GP's care, even just a little telephone call just to say, ‘Just to let you know I’ve received the letter back from the rheumatologist,’ you know, it’s the first official diagnosis, is everything – not saying, ‘Is everything okay?’ because that’s obviously more of a sort of therapy question. But just sort of saying, ‘Is there anything I can do to help you in terms of a management plan?’ or, ‘Would you like to come back in and see me?’ or, you know… or even just to say, ‘If you’ve got any questions, please feel free to make an appointment.’

So that’s you know, that could have been a letter from the doctor or something, and I think but I mean, that’s not uncommon with anything within the NHS. Things sort of… once you get discharged back, that’s kind of a bit like, ‘Well, it’s done now, it’s done and dusted, there’s no need for follow-up,’ and I completely understand that that’s because, you know, you’ve got however many people coming through the door for the next diagnosis or the next… you know, the next problem that’s coming through. But I think… it seemed like there was so much going on within a really short space of time, a lot of referrals and a lot of seeing people and a lot of tests, and then it was kind of a bit like, ‘There we go,’ because fibromyalgia’s not massively understood or massively thought about, or we don’t know how to treat or cure it, like, we’ll kind of leave it up to you know time, I guess.