Kristie
Kristie was diagnosed with fibromyalgia in 2020 after experiencing pain for two years. Her advice to other people with fibromyalgia would be to “be open with how you’re feeling, don’t feel guilty about not feeling well, and just look after yourself…”.
Kristie is 32, single and lives with flat mates. She works full-time. Ethnicity: White English
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Kristie was diagnosed with fibromyalgia early in 2020 after struggling with joint pain and fatigue for a couple of years. Lupus and rheumatoid arthritis run in her family, and she was initially worried that it could be related to this. After blood tests showed up nothing, her GP referred Kristie to a rheumatologist who diagnosed fibromyalgia. She describes only ever having had this one consultation as shortly after her diagnosis the COVID-19 pandemic started. However, she continued to get support from her GP during the pandemic.
She has also been diagnosed with asthma and a rare condition called hidradenitis suppurativa (HS) (a painful skin condition that causes abscesses on the skin). She has observed that fibromyalgia can make her HS-related fatigue worse. In addition, Kristie experiences memory problems.
Kristie felt “quite pleased” about her fibromyalgia diagnosis as it reassured her that “it wasn’t all in [her] head”. Kristie was prescribed gabapentin for the pain. However, she doesn’t feel the medication is helping much.
Although she has had good support from health professionals for her mental health, Kristie feels that this kind of follow up could be provided for her fibromyalgia. Particularly, she wishes that they could inform people better early on (for example, about support groups) as fibromyalgia can be quite a “scary” condition to be diagnosed with and manage the condition “…with me, rather than me managing it and them being a sort of side part of it”.
She describes living with fibromyalgia as being different from day to day – some days you can feel well, whereas other days you can feel “awful”. As a result, Kristie takes each day as it comes and tries to “take advantage of those good times”. For example, she goes for a walk when feeling good and doesn’t think about the next day.
Kristie meets regularly with a group of women on the internet who have hidradenitis suppurativa, some of whom also have fibromyalgia. She describes the group as being very upbeat and positive. Kristie feels that the group provides a safe space to share experiences and makes her feel less alone, enabling her to better manage both of her conditions. Speaking to people with the same conditions has been really helpful to Kristie as they understand what it’s like. She doesn’t think anybody “really understands if they don’t have it”. Further, Kristie tries to raise awareness about the conditions and connect with others for support via her Instagram account.
Her advice to other people with fibromyalgia would be to “be open with how you’re feeling, don’t feel guilty about not feeling well, and just look after yourself and your body…listen to what your body’s saying.”
For Kristie, living with fibromyalgia is different from day to day – it can be “sneaky.”
For Kristie, living with fibromyalgia is different from day to day – it can be “sneaky.”
Yes, it’s, what’s the word that I’m looking for? Living with fibromyalgia is different from day to day, it surprises you in that one day you might feel normal and then the next day or three or five days you feel awful. So it’s, it really creeps up on you, and you know, one day you could be feeling great and then it hits you like when you’re washing up [laughs] and it just yeah, you just have a horrible flare. So, yeah, it’s sneaky, fibromyalgia.
Kristie talks about how members of her family have experienced similar symptoms over the years and that these are linked to other auto-immune conditions.
Kristie talks about how members of her family have experienced similar symptoms over the years and that these are linked to other auto-immune conditions.
So I was, actually diagnosed only in January, but before then I had had a couple of years of really struggling with my joints, which I’ve never had before. I’m quite active in that like I like to do activities, so I like to go for walks and I like to, go to the gym, but I was really, really struggling, with it.
I saw my doctor, my GP quite a few times because lupus actually runs in my family so I was aware of these types of symptoms and, and rheumatoid arthritis so I obviously got quite worried about it. But, he did a blood test, and nothing showed up. So it took a few times of me going to them and see them about the pains, and the symptoms that I was having, the fatigue and everything, for them to finally, refer me to a rheumatoid consult, an arthritis consultant, a rheumatology consultant, who noted down all my symptoms, spoke to me quite a bit and then said that they think that it’s fibromyalgia.
Well my, some family members have, lupus and, so they have arthritis. My nana is a retired nurse, she has rheumatoid arthritis from old age and, my auntie has rheumatoid arthritis and has a really, damaged hip. So I’ve spoken to them about these pains and spoken to them about their experiences and it just worried me because it’s kind of in my family already, the symptoms were similar, and I just wanted to make sure that it wasn’t the same sort of thing [laughs].
Kristie found it hard to start relationships because of her symptoms. She’s open with her new boyfriend about the pain she can feel when having sex.
Kristie found it hard to start relationships because of her symptoms. She’s open with her new boyfriend about the pain she can feel when having sex.
I think it might be, interesting for you to talk to people about like their relationships with, partners and maybe their like sex life because it can really affect you if you’re having a bad day, pain wise, emotionally, yeah, it’s a big thing for me, especially just at the moment it is anyway, so, but it really affects you.
Do you want to tell me a bit more about that, would you be okay with that?
So, I find it hard to start relationships because of my symptoms, so, well obviously with my HS, like I’m not very body confident. Also, with fibromyalgia, you’re tired a lot andI struggle to even stay [smiles] awake to like text someone or talk to on the phone, let alone like go out and meet them and have an active like relationship, like especially when you get into a relationship it’s nice to do things like go for a walk [shakes shoulders] or you know, go somewhere and it’s a proper struggle for me so, there’s that.
Then also, also there’s this, obviously the sexual side of things, it’s painful, if you’re in pain already you can’t [smiles], you can’t be like jumping [laughs] around everywhere because you just, you can’t, you physically can’t [smiles], so that could, that can affect things in, sort of just a rubbish way as well, so [smiles].
So how do you cope with this then, or how did you, did you find some ways around how to deal with this?
I was just, I was just open with my boyfriend about how, it’s all, it’s all very new [smiles] at the moment this, this relationship as well, so, but that started in January [laughs] as well, the, the same time I found out about fibromyalgia. So yeah, I just, I just explain like every day is like, what the pains, what my pains are feeling like without being super moany [smiles] and like depressed, I’ll just say like you know, just tell the truth, like explain, I explain to him how my shoulders feel [moves shoulders up and down] and stuff and you know, we had a good chat about that the other day, yeah, so.
I think he’s very aware, very conscious, of my lower half pains, especially when we’re [laughs] having sex, so, yeah. It’s, so you just have to be open and honest, and if they can’t deal with it then they can’t deal with so they’re not for you.
Kristie wondered how she would cope with a newborn if “I am this tired.”
Kristie wondered how she would cope with a newborn if “I am this tired.”
It has, it has come into my mind thinking like how would I manage pregnancy and how would I manage then having a newborn if like I am this tired, and how would a pregnancy affect like my body, so it has crossed [raises eyebrows] my mind definitely, but I don’t know too much information about it really. I haven’t looked into it in that sense, I haven’t [shrugs left shoulder], Googled anything or asked anyone about it, so.
Would be that something for example which could be something you might be interested to find out more at some stage?
Yeah, definitely.
Kristie has started her own Instagram page and thinks people don’t really understand unless they have fibromyalgia themselves.
Kristie has started her own Instagram page and thinks people don’t really understand unless they have fibromyalgia themselves.
I don’t really have, much of a support I’d say, in terms of people that understand what I’m going through apart from, some people that I’ve met on the internet [smiles]. So I do have a group of, women that I speak to regularly, that have HS and, some of them have fibro as well so it’s good to speak to people that have, have the same, issues that I have, because they understand more. I just don’t think anybody really understands if they don’t have it [smiles], so.
Can you tell me a bit about this group, of you know, women you, how did you get in contact with them and is it just online or, yeah?
Yeah, it is just online for the time being because obviously we can’t meet. But I started an Instagram page, for my HS when, just before Christmas I think and I, it was just really to probably make myself feel better at first but it’s sort of grown into this, page that I get in contact with, other people. We’re now, I’m now in this group of women that, one of the ladies is a, has a business that has to do with HS, because I have a job that’s beneficial for that, I help her out, we have another woman who’s been on TV with it who’s got quite a good following, and yeah, we have a really good sort of group. And yeah, it is online for the time being.
There is the one lady that lives near me actually, so we’ll probably meet up when we can [laughs], but obviously now it’s all online or on the phone [laughs].
What does it mean to you to have you know, this support?
Oh, it means so much [smiles] like because, well not, when, we’re quite positive with each other, we don’t, it’s not like a pity party of women with conditions [laughs] that we just like moan all day, we’re really good at like keeping our spirits up and you know, helping each other with information. Yeah, well if someone’s read, read like a journal or an article or something then we’ll pass it on or if someone’s heard of something, that helps we’ll pass on that information. It’s good, it is really good, positive, uplifting group of people.
Kristie wishes that her doctor had signposted her to support groups. She also wishes that that they would periodically call her “to check in.”
Kristie wishes that her doctor had signposted her to support groups. She also wishes that that they would periodically call her “to check in.”
So probably, getting in touch with me [smiles] rather than me getting in touch with them about my pain medication, so them keep, keeping track of it. I feel like sort of like they don’t even know that I’m on it [shakes head], so I could’ve just been on it for the, for the rest of my life and it not been followed up with. Yeah, I think that, that’s one thing that I’d prefer.
Another thing is you know, referring me to, to groups, local groups or other people that have it, or even setting up their own group of patients, that would be quite nice, something a bit more personal. Maybe just ringing to check in with me. Again, I know they’re really busy and I know that that’s probably the last thing on their mind, but it would be nice, it just would be nice [shrugs with left shoulder] if that could happen. Yeah, just really sort of managing it with me rather than me managing it and then being a sort of side part of it.