Karen

Age at interview: 33

Age at diagnosis: 30

Brief Outline:

Karen experienced pain for several years before she was diagnosed with fibromyalgia in 2017. She has her own Facebook page and hopes that she can raise awareness and help others by sharing what it’s like to live with fibromyalgia.

Background:

Karen is 33 and studies towards a degree. Ethnicity: White British

More about me...

Karen was diagnosed with depression when she was 16, and over the years into her late teens/early 20s she started feeling pain across her shoulders and neck. Her GP at the time told her it was “just stress and tension, just try and relax”. Over the years, she describes having seen several different GPs about her pain and being told that the pain was because of her depression. Karen also suffers from irritable bowel syndrome.

In 2017, Karen describes feeling she had to “beg” her GP to refer her to a rheumatologist. She was eventually diagnosed with fibromyalgia and joint hypermobility [having very flexible joints that can also cause pain]. At the time, she describes thinking “Okay, I have a diagnosis, I can move on from there and get treatment”, followed by “Little did I know that there wasn’t any”.

To Karen it feels as if her current GP thinks much of her pain is “in her head” and that the answer is to “learn to cope with chronic illness”. She remembers how he suggested her to buy a book about living with chronic pain and that this made her feel angry. She felt not understood and unsupported. Karen also sees a psychiatrist who prescribed her some medication in the past that was supposed to help with her pain. However, the medication didn’t help and caused her to gain weight.

Karen describes again “begging” her GP to refer her to a pain specialist which he eventually did. However, she felt frustrated when she was told “There’s nothing we can do”. Although there was a pain management group available, the specialist didn’t recommend her to attend which she felt very upset about. She remembers him explaining that she might “disrupt” the class due to her borderline personality disorder and anxiety.

Karen asked her GP to refer her to an occupational therapist. As a result, Karen received a perching stool for the kitchen and bed rails for her bed. The therapist also gave her practical tips (for example, for showering). Karen felt that this particular health professional “cared” – “[she] listened to me and put something in place that would make my life easier”.

Some years later, Karen tried to organise a cleaner to help around her house because she identified this kind of support as something that could make a difference in her life. She got frustrated when she was told by two health professionals that she “[didn’t] really fit the criteria” due to her age and specific needs.

Karen gets support from a mental health organisation which she finds quite helpful. However, she was unable to access this support during the COVID-19 pandemic. Further, Karen attends a support group for people with fibromyalgia. She finds their support “incredible” and is now active in the group herself. Using virtual meetings allowed the group to continue their support. Karen also has her own Facebook page. She hopes that she can raise awareness and help others by sharing what it’s like to live with fibromyalgia.

Karen’s advice to other people with fibromyalgia and their families would be to “find support groups”.

Karen says her doctor’s initial thought the pain she was experiencing was just stress and tension and also suggested it might be because of her depression.

Okay, I’m 33 now, so when I was 16 I was diagnosed with depression, and over the years, into my late teens or early 20s I noticed that, I started getting pain across my shoulders and into my neck, and I went to the doctor and was told, “It’s just stress and tension, just try to relax. You also have anxiety, try to relax, don’t bring your shoulders up to your ears, try to relax”.

And then over the years I ended up going to different doctors with different types of pain; pain in my wrist, headaches, fatigue, feeling really tired, and I used to have a lot of energy, I mean I was very sporty at school, I mean I would climb trees and lampposts and you know, I was in the Army Cadets, I wanted to be a soldier, and then I just lost all my energy. I went to a different doctor who suggested it’s because of the depression and that I need to get up and go, and I said, “I can’t, I’m too sore”

So at that time I lived in a city, whereas now I live in small country town, so I have changed doctors yet again, and the doctor that I’m currently with has said that the only thing that I need to do is accept that I’m in pain and will be for the rest of [my] life, and that I need to learn to cope with chronic illness.

But in the meantime the pain has got worse, it has spread to my arms and legs and my shins and my feet and my other wrist now hurts too.

Karen struggled with the exercises his physiotherapist wanted her to do.

And when I went back to my next appointment with him I explained to him, “What you had me do at the last appointment left me in bed for five days, I couldn’t move my legs”, and he said, “How did you get to the toilet?” and I thought, “Is that what you take away from that, how did I get to the toilet?” So I said, “I’m not coming back”.

So I went back to the doctor again, and I said, “Listen, I am still sore. Every time I go to a physiotherapist they want me to exercise. I’m aware that I am fat, I am aware that I’ve put on weight, I cannot exercise because I’m in pain, if you sort out my pain I will exercise” Happily, I want to.

So I was referred to a physiotherapist in the hospital this time. The others had been in the primary care centre. I went to the appointment at the hospital and I was taken in and seen by a lovely woman and she said, “You don’t look too happy to be here”, and I said, “Well because I’m not and I will tell you why”, I said, “I am not going to exercise, I am not going to squat against a wall. I am not going to do yoga positions. I am here because I am in pain and either you can help me or you can’t”, and she said, “That’s totally understandable”.

And she went through different, she actually went and got out a printout leaflet and brought it to me and gave me a list of exercises that I can do for someone with limited mobility and I looked at it and I laughed, and she said, “What’s funny?” and I went, “They’re all on the floor, I can’t get off the floor. I appreciate that you’re trying to help me but I cannot do those either because I need someone to help me off the floor, I can’t get up”, and she went, “Oh, so I take it you don’t want to come back for a follow up appointment?” and I said, “No, I don’t want to”.

Karen says you can either change the sheets or shower on one day.

Like having, having a shower and changing the bed on the same day is a big no-no you know, getting dressed, the sensitivity, on your skin, hearing sensitivity, smell sensitivity. I mean loud noises for me is just [gestures to ears], I can’t handle it. Clothes, I’ve had to change to what I wear to things that don’t have seams, bras that don’t have hooks that I have to put on over my head because they’re softer on my skin you know, shoes, I’ve went up a shoe size because I put on weight, I’ve had to get rid of all my clothes and had to buy a whole new wardrobe because I’ve put on so much weight.

I find that it’s unpredictable, but I know that if I stand at the sink to do the dishes I know that my back is going to get sore so I have to sit down to do the dishes, but then I’ll have to stretch into the sink so my arms are going to get sore.

So it’s, it’s finding ways of doing things differently you know, getting a shower, I know that I’m going to be exhausted after getting a shower, so I get a, I change the bed one day and I get the shower the next day because I know that I can’t do both.

Karen talks about some of the other symptoms she experiences which she thinks are part of her fibromyalgia.

Yeah, because there, with, because with fibro there are other things that come with it like the dry eyes, there are the IBS, the costochondritis you know, things, different types of things, if there’s something, if a healthcare professional knows that these things come with fibro and that there’s something that can help those symptoms, by all means refer you know.

But with fibro as a whole there, there are so many other little things embedded in there that make up the diagnosis of fibromyalgia, so I think it, it’s finding the little things and noticing the little things that might need addressed, and that in turn might then help the big thing which is fibro itself.

You know the healthcare professional, I mean I went to go and see about getting laser eye surgery done but because I had dry eyes I couldn’t get it done, and I have to have drops in my eyes now all the time, and the doctor didn’t notice that. I went to the doctor because my eyes were streaming and he said, “It’s hayfever”, and I said, “It’s winter, I don’t have hayfever, it’s winter”.

But when I went to get the laser eye surgery I was told, “No, you’ve got dry eyes, you can’t have it done”, I thought, “Well if that had have been picked up I could’ve been having the treatment for the dry eyes sooner”. You know there’s things different healthcare professionals might notice about someone that they can then make a difference to.

So how would they you know, find out about or you know, notice these little things, how could they find out about that?

I think it’s communication, it’s asking the patient, “Has anything changed? Is there anything worse or better?” you know, there’s like a list of things that come with fibromyalgia, it’s asking them, “Do you have this? Do you think you might have this?”

You know like with the IBS, a lot of people have bowel issues and don’t realise that it’s connected. Dry eyes you know, the costochondritis, like the pain in my chest, people don’t realise that they’re all connected.

So it’s asking the patients those questions and finding out for themselves you know. It might take that, it might take that bit more time with that one patient, but it’s time that that patient will appreciate.

Karen was visited at home by an occupational therapist who sorted several aids and adaptations for her and made her feel someone cared.

So the doctor that I went to I asked you know, “Can I have an OT come to my house and see what help I need because I’ve been told by a lot of different people that I’m entitled to this?” None of them professionals, just regular Joe’s, friends, people that I know who have said, “You do know that you’re entitled to have an OT come and assess your house?” and I thought, “Well my house is already adapted but I am having trouble getting out of bed”. I had to buy a new bed because mine was too low, so I had to spend money and buy myself a new bed not knowing that I could’ve got bed rails to help me get out of bed.

So the, the doctor then did refer me to the OT who came out and done the assessment and they were actually very good.

So when you say they were really good, what made them good?

Well when they came out they asked me what I felt I needed rather than looking around and saying, “You don’t need anything”, they asked me what I felt and then they either agreed or disagreed and explained why. Then I asked them, “Do you need to look around the house?” and they said, “No”. They asked me, “What do you feel you need?” and I explained, “I find it hard to do the dishes”, and they said, “We”, she said, “We can supply a perching stool, would that be something you’d be interested in?” and I said, “Yes”, and she asked, “What else do you have trouble with?” and I said, “Well getting in and out of bed”, and she said, “Well we can supply a bed rail”, and at that point she said, “Can I see your bed?” just so that she could get the size of the bed rail right and I said, “Absolutely”, straight in there and she had a look, “Okay, we can supply that”.

And then the bath, the shower seat was actually given to me by my mum, so it’s a metal, it’s metal and I explained to the OT, “It’s metal, it’s cold to sit on, it’s hard”, and she said, “Well the one that you have is the one that we would supply”, and then she gave me advice, “Put a towel on it or buy a bath mat and put that on it to make it softer to sit on”, you know, they, they gave me advice instead of just saying, “You already have one, you don’t need it, you don’t need one, that’s what we would give you”, she gave me advice as to how to cope with the one that I have, which has actually made a difference.

So what kind of difference did that make to you, you know, to have someone looking at it and not just say, “Oh, yeah, that’s, you have a chair”, but actually pointing out different things, which would help you cope with these kind of things?

For me it felt like this person cared about my way of life, about my comfort, my level of comfort, how to make it better you know, they didn’t just brush me off or brush me aside and say, “Well you have a chair, what more do you want?” and I would never have thought about putting a towel or something on it, and I thought, “Well a towel’s going to get wet and it’s going to get cold so maybe I’ll go with the bath mat”, and I done that.

So feeling that these people actually cared about even though I’m young and I look physically fine, there is something wrong with me and I need help and they were willing to give it, regardless of what I looked like on the outside they recognised that I need help.

Karen looks at the source of the article and spelling/grammar to check to see whether in her opinion it’s trustworthy.

Well website wise or articles I look at the spelling and I look at the source. If the spelling is a bit dodgy and the grammar and things I will say, “That’s rubbish you know, that is written by someone who just wants to make a bit of money writing an article”. I look at the source and if it’s a reputable source like sometimes news websites will put out an article about fibro and it’s totally wrong, so that’s not a reputable source. Whereas if it’s a health organisation you know, that might be a bit more trustworthy.

There are a lot of blind spots with fibro, there are a lot of things that people still don’t know, so a lot of it is speculation. So when someone says, I mean even just today someone says, “Do you think it was, your injections as a child that gave you fibro?” and you know, people are coming on and agreeing and I’m like, “But we don’t know that. Where is the evidence?” and other people are saying, “Have you had a trauma in your life and then got fibromyalgia afterwards?” Well I’ve had a lot of trauma in my life but I don’t know if that is what has caused my fibro.

You know, I try and think logically and if I read the article and it makes sense to me, I look at the source and if the source seems, if I don’t understand where, what the source is I will look it up you know.

A lot of my uni work taught me how to look up credible sources, so that, that’s how I know to do that, otherwise I wouldn’t have a clue and would just believe everything I read you know, “Did you break your leg?” “Yeah”, “And now you have fibro” you know. A lot of people are saying, “I broke my leg when I was younger now 20 years later I have fibromyalgia, I think that’s what caused it”, well you don’t know that.

So it’s you know, check your sources, check the grammar, the spelling and check that you know, the information is credible you know, that’s the only thing I can say about that.

Karen is part of a support group for ME and fibromyalgia. She feels that “the amount of the support that floods in just lets you know that you’re not on your own.”

But they, they help ME and fibro patients. If someone has a question, “Where is the best rheumatologist? Who did you go and see?” you know, “Who is the best private person to go and see?” you know that way she started off on her own and she now has a group of volunteers helping her and there is a, a well renowned doctor in, I think it’s in [a big city] who was on our last monthly Zoom meeting, because we obviously can’t meet up anymore we have monthly Zoom meetings, and he was included and, he’s a doctor for infectious diseases and control and it’s a long, long title. But we got a lot of really good information from him, which, who is a doctor that you would have to pay privately to see and we got to ask him questions for free you know. So setting things like that up for us, I mean it’s you know, you can’t put a price on that, and that’s a charity so you know, fundraising.

What kind of difference has that group made to you?

It’s given me the support that I need, information that I need. I mean I can ask one person, “Does anybody have this as, a symptom of fibro?” and they’ll say, “Yes”, or, “No”, and I’ll know, “Okay, that’s not my fibro, that’s something else”, or they’ll, or I’ll ask, “Does anybody know a good place to go for a sports massage or ?” anything really and someone will have the answer, and if they don’t have the answer they’ll go and find it.

They offer support, when you’re just having a really bad pain day they understand and you go on and you put a post on and the amount of the support that floods in just lets you know that you’re not on your own. Even though you may be one of the younger members you’re not on your own because my mum is a member as well but she isn’t as active on the Facebook page. She did come to the monthly meetings with me, we went together, and that was something that helped us both because a lot of the things my mum didn’t understand about fibromyalgia either.