Thinking about causes of fibromyalgia

It’s not generally known what causes fibromyalgia, but in many cases the condition seems to be triggered by a physically or emotionally stressful event. It’s also been suggested that in some cases it could be hereditary. Several of the people we talked to reflected on what they thought might have caused or triggered the start of their symptoms. Generally, these seemed to be connected to traumatic events in the past (e.g. car accidents, sports injuries, assault) or big life changes like, for example, a marriage break up or bereavement. At the same time, some people said they could not pinpoint any particular reason why it had happened to them.

Liz and Martina both started noticing symptoms of fibromyalgia shortly after being involved in car accidents. Liz also had a series of falls on the same day as her car accident, but at first doubted the doctor’s suggestion that the car accident and fall were the cause of her fibromyalgia.

Liz started experiencing pain in her neck, shoulders and arms shortly after being involved in a car accident and experiencing a fall.

Age at interview 66

Age at diagnosis 47

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Right. Well in 2000 I was in a car accident, just a small one where there was two, two emergencies stops, I also had a fall on that same day. At that point I was nursing, I went into work, it was nightshift, and my neck was extremely painful, so much so that I had to go home and I have never nursed since because by the following day it got worse and it affected my neck, my shoulders and my arms.

Oh aye, it was aye, it was positive because I’d been waiting six months and going through all this other stuff you know, and the GP at the time was saying, Well that wee accident you ha and it happened like three times in the one day That’s the cause of i, and I thought, That’s not the cause of i, I mean I’ve had whiplash before.

But as I say this, it was very debilitating you know, and even you know, getting out a chair it was, because you had to use your arms to get out the chair and your neck was sore and your arms and your hands and this you know, like it’s swollen today, this would all be swollen and my arms would be swollen. And this went on for six months and I’m saying, Oh, it’s just caused by a wee emergency stop in a ca, no.

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Martin describes being assaulted and robbed in the 1990s and says his initial pain started in his back.

Martin started noticing symptoms around the time he was assaulted and robbed.

Age at interview 46

Age at diagnosis 28

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Well it first started, I’m not entirely sure, but it could, it was probably in the 1990s, the mid-1990s. Originally I was assaulted and robbed, and that was in the 90s, and I would say my pain started on my back. As I was working at the time and I was finding it more difficult to do my job, and I kept going for years with my pain and fatigue, well it was mostly the pain to start with, then I was finding myself really tired. I’d be going to work on the bus sleeping, on my tea break I’d be sleeping, lunch hour sleeping, in pain, by the time I got home and had something to eat I would be in bed, and I would say that lasted for about two years. Then I was struggling at work, then there was just one day I couldn’t go back to work. If I went back another day I would’ve had a breakdown or something. And it was then, it was about 1999 I think that I went to the doctor, and then he diagnosed me with, well I think it was my GP, when all he did was write it down on a bit of paper fibromyalgi and sent me on my way.

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Around the time Bette started noticing symptoms she was looking after her disabled mum and grandmother with dementia, who both later passed away. She also describes not being informed that her father had died around this time. The stress associated with these events made her symptoms worse.

Bette started noticing symptoms when she was caring for her disabled mum and grandmother with dementia.

Age at interview 63

Age at diagnosis 43

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I think I first noticed about more than 20 years ago. My mum had a stroke and was in a wheelchair, I had to do a lot of heavy lifting, sleep beside her at night, turn her in bed during the night, and the pains would just get worse after that. I subsequently looked after my grandmother who had dementia, which is very challenging, plus I worked full-time.

In December 1999, my grandma passed away and then in January, the Millennium, I had gone to visit my dad, who I’d seen previously on the 23rdDecember and to collect my gran’s things. When I got to the nursing home, I met a member of staff who said, I’m sorry to hear about your grandmother I said, That’s fine, she was 86 blah, blah, blah. And she said, And your dad and I said, What about my dad and she said, He died on New Year’s Day two weeks after my grandmother. And I said, Well, I would like to think you would know where my dad’s body was? I hope the funeral’s not passed because by this time it was 12thJanuary.

His body was in a funeral director’s and the funeral was the next day. So I got my brothers and my sister together and we went to the funeral, and then shortly after that, I think it was about a year maybe, a wee bit more than a year, my mum passed away. And I think just steadily after that, got worse and worse.

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Rosie first noticed there was something wrong or different when she was about 10 or 11 years old. She describes being a very sensitive child, experiencing physical reactions to various events and stresses in her life (e.g. pins and needles, pains in her hand and legs, bad headaches). She thinks these reactions were ‘just tension and holding things in’ and looking back she thinks these symptoms were actually fibromyalgia.

Rosie first noticed there was something wrong or different when she was about 10 or 11 years old.

Age at interview 54

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And can I start in retrospect, when I look back, not knowing what it was, but now realising that it was probably the fibromyalgia, a long time before I knew it?

Absolutely. Absolutely.

Okay. Okay. Well, I’d say that I first realised that there was something wrong or different when I was about 10 or 11, and I was a very sensitive child, and everything seemed to have an impact on me. And I had growing pains in my legs, I had pins and needles in my hands, and any noise or any argument or any disruption in my home life made me freeze, and subsequently feel pain or something strange in my hands or legs. And I had bad headaches from quite a young age all the time. Certainly weekly, and over my lifetime, almost daily, which I now see in retrospect was tension. Just tension and holding things in. So that started about that age.

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Rosie finds that knowing her symptoms are often stress-related helps her control the condition.

Some of the people we spoke to mentioned that their doctor thought it might be a virus or post viral fatigue that was initially causing their symptoms. Helen describes questioning this as she didn’t feel like she had had a virus at the time. Jacqueline talked about her symptoms starting when she was recovering from glandular fever, something she describes as being ‘very very’ sick with. Michael thinks that the neurological problems resulting from his past treatment for cancer contributed to his fibromyalgia.

Jacqueline describes her problems as starting around the time she was recovering from glandular fever.

Age at interview 53

Age at diagnosis 33

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Okay. 1996 I started with problems with my knees and I was going off balance, very, very clumsy, letting things fall, I didn’t know what was going on with me. And prior just to that I should’ve said that I was recovering from, glandular fever and I was very, very sick with that, and this, the, the, the numbness, there was numbness, there was the migraine, distortion in the eyes without the pain in the head, I had muscle, very, very muscle, muscle weakness, and it just was not clearing, terrible, terrible fatigue. And when I would try to sleep I couldn’t sleep and that was very, very distressing because I had two young kids to look after.

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Michael thinks that the neurological problems resulting from his past treatment for cancer contributed to his fibromyalgia.

Age at interview 63

Age at diagnosis 61

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So initially, I had gastrointestinal problems leading to me needing to have a stomach operation, that was because of the radiotherapy damage to my stomach. I had cardiovascular issues, kidney issues, other urology issues, neurological issues, and the, I have a feeling based on my understanding of fibromyalgia that my neurological problems, caused by the damage to my nervous system from past chemotherapy and radiotherapy, overlapped with what is being called fibromyalgia in my, in my own case.

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A few people mentioned that they or other family members had auto-immune conditions, and there is some suggestion that it could run in families.

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.

Age at interview 32

Age at diagnosis 32

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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].

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