Aleysha

Age at interview: 23

Age at diagnosis: 22

Brief Outline:

Aleysha started experiencing pain when she was 16 and was diagnosed with fibromyalgia in 2019. Aleysha thinks that there needs to be more information and practical support regarding the impact of fibromyalgia on people’s emotional and mental wellbeing.

Background:

Aleysha is a full-time student and shares a home with her wife and a flat mate. Ethnicity: White Scottish.

More about me...

Aleysha first started experiencing problems with chronic pain in her back when she was 16. At this time, she was still at school and training semi-professionally with a sports team. Her parents initially attributed her back pain to “growing pains”, and she saw a physiotherapist who recommended specific exercises to deal with potential muscle issues. Aleysha continued her training, but had to stop suddenly when one day she could not move. During the years that followed, Aleysha attended a pain clinic and had various scans and treatments. Although she saw physio therapists, chiropractors, acupuncturists and osteopaths, she was not given a diagnosis or a cause for her pain. After contracting malaria during an overseas university field trip, her back pain worsened further, and she started experiencing different infections and pain in other parts of her body. In 2018, Aleysha went to her GP after looking into her symptoms. She asked whether she could have fibromyalgia, which her GP agreed was a possibility. Aleysha was referred to a rheumatologist who ruled out a series of other conditions before telling her that “it’s probably fibromyalgia.” Aleysha was then given a leaflet and recommended to talk to her GP about medication, which she found frustrating. Aleysha has also experienced other health issues such as depression and irritable bowel syndrome.

Aleysha takes some medication for her fibromyalgia symptoms and is currently on the waiting list for a different pain clinic. She regularly sees her GP who she trusts and finds very supportive. However, Aleysha feels her GP is waiting for specialist guidance on how best to manage fibromyalgia, which has not been forthcoming. She pays privately for regular appointments with a physiotherapist, which she finds helpful. She has also benefitted from seeing a counsellor, though only receives a limited number of sessions on the NHS. Aleysha thinks that there is a lack of information and practical support for people with fibromyalgia regarding the impact of the condition on their emotional and mental wellbeing.

Aleysha’s whole life has been negatively impacted by fibromyalgia. She is no longer able to take part in competitive sports, and has also had to adjust her career and family aspirations because of her ongoing health difficulties. Whilst she has had to take a break from university because of her health, Aleysha has since returned to her studies. A disability support officer has helped to make the courses more accessible for her. Over time, Aleysha has read many research papers and books about fibromyalgia. She has learned how best to self-manage her various symptoms, and has found that establishing a routine helps her to function better during the day. Aleysha has friends she can “rely on” and feels well supported by her wife, who she feels helps her better cope with her symptoms. She also enjoys walking her dog and feels comforted when having a difficult day.

Aleysha’s advice to other people with fibromyalgia would be to try to build a support network around you. She encourages others to be pro-active and to try to understand the condition as best as you can.

After the interview, Aleysha was seen at the pain clinic after 21 months on the waiting list. She found the appointment not helpful and has been discharged from the pain clinic. Aleysha has also been able to function better during the day, without needing to take a "nap" during the day, which she credits to a change in medication.

Aleysha talks about the unpredictable nature of fibromyalgia.

I think there’s a couple of different ways that I could describe it succinctly. The first would be everything hurts all the time everywhere, and everything hurts more than it should.

The other way in terms of some kind of metaphor , it’s like if you, when you wake up in the morning and you, I don’t know, you go to, I don’t know, you pick up a piece of wood that you need to sit on, like that’s going to be your chair for the day. And some days it’s going to be strong and you’ll be fine, and then other days you sit on it and it breaks, and you, you don’t trust that it’s ever going to be reliable. And then some days it’ll start out fine and then it’ll break.

So your body essentially is just unreliable and you can’t trust anything, and then you, it makes you question yourself. I’m not sure, I feel like there are so many other ways. There’s the spoon theory but like everybody knows that. I don’t really agree with spoons, I think it should be something else [laughs].How else would I describe it? It’s just like …

It’s all right …

I would say that it’s like every day being your worst day until it gets worse. Like you just feel horrible all the time but then you deal with it I guess. I don’t know, it’s so complicated [laughs].

Aleysha was referred to a rheumatologist who ruled out a series of other conditions before telling her that “it’s probably fibromyalgia.”

So I went to my GP at some point in I think September of 2018 and I said to her, “I have all of these problems”, half of them I hadn’t even mentioned to her before because it didn’t occur to me that it was relevant, and I was just like, “I’ve been looking into this and I think that there’s a chance that I either have fibromyalgia or chronic fatigue syndrome. I don’t know what you think, but these are the things that I like have researched, and these are the symptoms that I have. What is next?” And she was basically just like, “Yep, I agree”.

So at that point she said to me that like she wasn’t in a position to give that diagnosis and that it was something that had to be given by, somebody who had more knowledge about it. But she started to work with me then, in terms of getting all of the referrals done. So I was referred for rheumatology and to the pain clinic at that point.

So I eventually got an appointment with them in January of this year, so 2019, and I went to see the rheumatologist there and he again, asked me lots of questions, did a physical exam, and basically just said, “Well it’s not rheumatoid arthritis, it’s not anything else that, like it’s not lupus”, or at least we don’t think it’s lupus, my mum has lupus so we will see if that’s something that I develop at some point. But, basically he was just like, “It doesn’t seem to be any of these other things that we’re concerned about, so it’s probably fibromyalgia”, and he gave me a leaflet and was like, “Off you go”, that was it, which, I understand because fibromyalgia obviously doesn’t fall into the rheumatology bracket but it just has to be excluded.

Aleysha said her diagnosis was helpful as people recognise fibromyalgia as a disability (whereas they can be less sympathetic about just a collection of symptoms).

So I’m still open to it being something else, but for now, given what we know about fibromyalgia and what I know about like my different symptoms, it seems likely that it is fibromyalgia, but I don’t think anybody’s 100%, and given that there’s no test, we don’t really know what causes it, it’s basically just a group of symptoms that you might have or might not.

Like we’ll see where it goes. Hopefully they’ll find out more, and it might end up being something completely different, but because I’m treating the individual symptoms, it doesn’t matter to me hugely exactly what it is, although it has been really helpful to get a diagnosis, because it means that like saying to somebody like, “I can’t work because my back is sore”, is different to me saying, “I can’t work because I have fibromyalgia”, because people actually recognise it as a disability, well for the most part, the people that think it exists. Those that don’t think it exists are also people that don’t think back pain exists, so it’s kind of the same problem.

But no, having a diagnosis has definitely made it easier, it means that like I can go and I can like get a sick note from my GP and like give it to, the Department of Work and Pensions and say, “I have this disability, I can’t work because of that”. And that made it a lot easier for me to receive the, the part of universal credit for, the limited capability for work and work related activities, which I had to go to an assessment for that, but I don’t know if they ever would have referred me for an assessment if I had just said, “I have chronic pain”, because it, it’s not great and it kind of sounds like a bit of a scam. Like I think that they’re just like, “Yeah, well a lot of people say they’re in chronic pain so deal with it”. So it’s been helpful.

Aleysha feels that physiotherapy has helped a lot, although she prefers to see a sports physiotherapist.

In terms of my physios, I’ve had a good experience. The NHS physio that I saw was okay, but I think she seemed to be somebody who more specialised in like geriatric care, and like people recovering from surgeries and things like that, which I think is more common in the NHS. Whereas the physios that I’ve seen privately have usually been like sports physios and used to dealing with high level athletes, which, fits a lot better with me because I have, I still have some like left over injuries from being an athlete, but then I also have some of these other problems that like my physio at the moment is very good and he’s been able to work around.

So I don’t think that that was, my private physio was better, but I don’t think that the NHS physio was bad. I think that like, like everything that she did, and her like giving me the referral for the hydrotherapy, like that was all great, like she was doing everything that she had her, had in her ability.

Aleysha has a good relationship with her latest counsellor and GP as they seem to accept “you are in pain.”

My latest counsellor that I’ve got is really good though, and she has like recognised a lot of different things and seems to be taking it fairly seriously. And also now I’m in a position where I actually, I want to work on the different things, so that makes a huge difference.

Okay. One of the most important things for me in terms of a relationship that I have with any form of healthcare provider is actually having the person listen to me, which is something that I have struggled with a lot because a lot of the time people say, “Oh, but you look fine, you don’t look ill, you seem fine”. And just generally I often come away with a feeling of they don’t actually believe what I’m saying, which is frustrating, but it’s also difficult because I tend to play down my symptoms a lot of the time because I don’t want to make a big fuss.

I’m learning that I need to do the opposite and I need to actually over emphasise how bad things are, because a lot of the time it just doesn’t get through to people.

But my GP and my counsellor have both been very good at accepting what I tell them at face value, because I think that like I don’t know if they fully believe me, but they are, like in terms of the causes of my symptoms, but they seem to accept, “You are in pain”, regardless of what that comes from they can help me treat it and deal with it.

Aleysha feels that her medication does help with her pain but makes it hard for her to sleep.

So I finished my year, I like kept going to school, still had pain, still didn’t know what was wrong, still didn’t really know how to fix it. I started taking some different painkillers.  At that point I was like then basically just given opioids and they were, told me, “Deal with it, don’t get addicted” [laughs], but that was the only thing that would take my pain away even briefly.

So I have been able to control my sleep over time, but it has taken a long time, especially because my painkillers, the only painkillers that actually completely take my pain away, are opiates, so I take tramadol, at quite a high dose, and that’s the only thing the works, and I have the problem that one of the main side effects that I have is that it keeps me awake.

It makes me very drowsy, so I can’t really function, but I can’t sleep. So I was constantly having this battle of do I take my painkillers to take the pain away and then not be able to sleep, and then I would have the effects the next day of not properly sleeping, or do I not take the painkillers and try to sleep, and probably not sleep because I’m in too much pain, and then see what happens the next day? So it just kept going on and on and on.

Aleysha had a few problems getting support, but a disability support officer has helped to make University courses more accessible for her.

In terms of studying and at university, I have been pretty much fine. I’ve had a few problems in terms of the disability support, but it’s mostly just like individual people not being great at their jobs. Like for example, I had discussed with my, disability advisor being able to park on campus and if it was possible for me to park in disabled bays because the car parks usually fill up really early. And I had gone to her in the middle of July because I knew that it was going to take a while to sort this kind of stuff out, and then she didn’t really do anything about it until like the first week of term.

And, at that point I realised when I’d been allocated where my classrooms were, I realised that one of my classes was on the third floor of a building that has no lift. So I got back to her and I was like, “I’m really sorry, but like these aren’t accessible”, and she just said to me, “Oh, but you didn’t mention having accessible classrooms”, and I was just confused because I had told her that I had mobility issues, and I also have problems with my memory and remembering everything, and that I had asked so much about my like being able to park and that I was waiting to receive my blue badge, and she was just like, “But you didn’t say anything”.

But then my dissertation supervisors, who’s also the disability kind of support officer within the school, of, like the department, he had changed the rooms that were an issue within half an hour of getting the email.

So it’s been mixed. He’s also really great and understanding because he has rheumatoid arthritis, so a lot of the symptoms are shared so he really like understands the condition, and obviously is used to dealing with disabled students. So that has been really helpful, and for the most part people have been good.

Aleysha feels that getting a diagnosis helped make it easier to claim, but sometimes if assessors don’t understand it can still be a problem.

But no, having a diagnosis has definitely made it easier, it means that like I can go and I can like get a sick note from my GP and like give it to, the Department of Work and Pensions and say, “I have this disability, I can’t work because of that”. And that made it a lot easier for me to receive the, the part of universal credit for, the limited capability for work and work related activities, which I had to go to an assessment for that, but I don’t know if they ever would have referred me for an assessment if I had just said, “I have chronic pain”, because it, it’s not great and it kind of sounds like a bit of a scam. Like I think that they’re just like, “Yeah, well a lot of people say they’re in chronic pain so deal with it”. So it’s been helpful.

To me personally it doesn’t matter that much, because it’s just the same things, but at least now, I guess one of the huge problems that I always had was that I felt that nobody believed me. And even now I don’t know if the rheumatologist that I saw actually believed me, but I have my GP, and I can just tell people I have this thing and then they’re, most of the time they don’t know what it is and they’re just like, “Oh, that sounds something bad, I will accept that”, and then they don’t think any more about it. So no, it like, it’s definitely helped.

When Aleysha was diagnosed she said she went “through a process of mourning my old self.”

But like a lot of specialists I find are so focused on the body and their research interests they forget that they’re dealing with people, and they kind of just treat you as, “You are patient number three”, and they deal with your body but they don’t deal with the fact that like for a lot of people it’s probably like a very emotional process, and like it definitely was for me, to get a diagnosis finally or to not be given a diagnosis but also just be told, “We don’t know what’s wrong with you, go away and see someone else”, and there’s not that like emotional support there.

And like for me once I first went to my doctor and I realised that it was likely that I had fibromyalgia, I was really depressed for a while because I finally managed to kind of, rationalise it in the sense that I was going through a process of mourning for my old self, and that like I realistically will never be able to play competitive sports again, and I probably won’t ever be able to have my own children because I don’t think that I would survive pregnancy. And just so many different things, that I most likely will never work a full time job because I need to have a nap.

Aleysha feels that now she’s “rationalised it and dealt with it.”

And it’s fine now, like I have rationalised it and dealt with it, but it would’ve been really helpful to have some more support from somebody that was like, “It’s okay to do this”. And I actually only, like I was just, I had all of this, these emotions built up inside and I didn’t know what to make of it.

And I think it was actually somebody that had posted on reddit in the fibromyalgia group that had like written a poem about it, and I was just like, “Oh, that’s what this is, like that’s what I’m feeling”, I just didn’t know what it was.

Yeah. So it took me a long time. I had taken, at that point I had dropped out of university so I had nothing to do for that whole year. I initially started going through the process of like applying for universal credit so that I could deal with the fact that like I had no income.

So I was kind of, it kind of put my own issues in perspective a little bit because I was like, “I’m still alive, like I can still do this, I just need to deal with it”. But no, I read a lot of books about pain, I completely changed my view of life; it took a long time, because I, previously I was planning to finish uni and I was looking to get an internship, I was looking to go into management consulting and potentially move to London, which is a really, like it’s a high stress career and it’s really challenging, which like I like would have loved it, and I’ve done similar work which I really enjoyed, but it’s not a reality anymore.

So I just changed my perspectives and kind of had to really question myself, like what I value. And thankfully I have my wife, I honestly don’t know what I would’ve done if I weren’t with her because that was at least one constant, and my dog. Actually my dog was probably the best thing to have because even on like my worst days when I couldn’t get out of bed, she would just lie next to me. And then on my better days I could take her for a walk and she would be equally as happy, which was definitely something that like got me through. I think everybody should have a dog, or at least one.

Aleysha did a lot of Internet researching of symptoms before and after a diagnosis – this helped her to get diagnosis and helps her to know how to deal with the symptoms.

So I went to my GP at some point in I think September of 2018 and I said to her, “I have all of these problems”, half of them I hadn’t even mentioned to her before because it didn’t occur to me that it was relevant, and I was just like, “I’ve been looking into this and I think that there’s a chance that I either have fibromyalgia or chronic fatigue syndrome. I don’t know what you think, but these are the things that I like have researched, and these are the symptoms that I have. What is next?” And she was basically just like, “Yep, I agree”.

So thankfully I already knew quite a lot about it because I had been researching it on my own and I read a lot of medical papers in terms of like what we actually know about fibromyalgia and how to best deal with the various symptoms. And I just kind of led my own treatment from there, so I would go to my GP and say, “I have this kind of pain, I think that this might help, what do you think?” and then she would say, “Yes” or “No”, or suggest something better.

So at this point I have managed to get, a medication that prevents my migraines, I am on, another medication for low mood, especially because I’m, I have comorbid depression and other mood disorders which I’ve had since I was 16 as well.

Aleysha wishes GPs understood more but recognises that they can’t work miracles and people need to do their own research too.

So it’s difficult, like I already know how like rigorous the kind of studying is, but I think it’s also partially on like us as the population, as patients to have an understanding of like people who work in healthcare aren’t like miracle workers. They are people and sometimes they make mistakes, and also they only know so much, and like putting less pressure on them, like you have your own responsibility to kind of do things to look after your health and you can’t just rely on the healthcare system, like you can’t just go to the doctor because you have a cold. But then also to listen to doctors when they tell you not to take antibiotics for things like colds because they’re viruses and antibiotic resistance is going to end the world [laughs].

Anyway, but no, I think that, I think there needs to be a lot more understanding of the situation, like, the reciprocal kind of, conversation, interaction that they have that doctors have to recognise that patients are people and that what they say will have a big impact, and the patients have to recognise that doctors and other healthcare professionals are also people and they can make mistakes and they don’t necessarily know the answer.

Aleysha says that it’s good to find out what works for you.

I think that trying to find, I think that the most important kind of aspect for people that have like maybe just been diagnosed or have had it for a long time is to build a support network and understand the condition as best you can, particularly in terms of your symptoms.

Like going to your doctor and just trying to like find out all the different kinds of medication that you can take and relying on that isn’t enough, like you have to be proactive and you have to take, like use the things that are available to you. Particularly like, like if you know that doing a lot of exercise puts you in a lot of pain and tires you out, then like play around with it, see if like “If you do less exercise can you sleep better, or are you in less pain?” And then take your answers to a doctor, don’t rely on them to always just be like, “Do this”, because most of the time it’s like, it’s just, it’s as complicated for them as it is for you, so yes.