My Life with Fibromyalgia

I woke up one morning and my leg didn’t work. I stood up then fell over.

I was 14 years old and I couldn’t stand up by myself. My leg didn’t hurt. It just wouldn’t bear my weight. I was living with my father at the time and had to call my mother to come and collect me. We spent the morning at the hospital . In between the x-rays and blood tests, I got to have a conversation with an utterly bemused police officer who was trying to interview some teenagers who had been in a car accident. Trying to convince him he was in the wrong room helped pass the time at least.

In the end, I was told I had had the flu and that the virus had attacked the liquid in my hip socket resulting in the bones grinding against each other causing permanent damage. I don’t remember having the flu, just a runny nose, however the blood tests showed influenza so influenza it was. I only stayed on crutches a few days. I should have stayed on them for a few months to let my hip heal, but when you’re the class victim of bullying an imaginary disease doesn’t exactly improve your street cred.

Whether or not this is when I developed fibromyalgia is open to debate. Some medical professionals say yes and others say no emphatically, my favourite doctor takes a “who the fuck knows” approach to it. I did remain asymptomatic for about a decade after. When I got sick, my body took longer than others to heal  – a frequent indicator of fibromyalgia – something that did not make me popular with teachers. And, Mr Stewart, I do still remember you insinuating I was faking illness to the rest of the kids in the class. That really helped with the bullying issue.

I was relatively healthy though. I had my first daughter when I was 19 and managed to get honours in two undergraduate degrees and a masters degree as a single parent. It wasn’t until I moved to Edinburgh to do a PhD that the symptoms  got worse. My right leg collapsed again and I struggled to walk. I was sent to a neurologist and an arthritis specialist. For over a year, I was treated as though I had arthritis and used crutches or a cane to walk. This is the exact opposite of the treatment recommended for fibromyalgia. I gained weight because I couldn’t walk. I failed my PhD because I couldn’t work: I was exhausted all the time and I started losing words.

Then I got pregnant. Pregnancy and fibromyalgia are not the best of buddies. My asthma resulted in hospitalisation. I had constant nausea and migraines. These culminated in post-natal depression which went undiagnosed for years. My baby was not a sleeper making the exhaustion and depression a whirlwind of hideousness. I was so sick for so many years that I have lost huge chunks of time.

On the positive side, I haven’t had real trouble with my right hip for years. I can predict the weather depending on how stiff it is but I can walk. My body has compensated in other areas: migraines at the base of my neck, excruciating pain in my left shoulder, pain in my right arm and elbow, migraines in my right eye. I also have fibro fog, aphasia, anxiety, depression, inability to control my body temperature, and sleep deprivation. Fibro fog effects my short-term memory, my language skills (hence the typos), and ability to communicate. I have huge pauses in my sentences and sometimes I forget what I was actually trying to say.

These are the medications I’m on for good days:

  • multivitamin
  • Vitamin D
  • B12
  • B6
  • iron fortified water supplement
  • amitriptyline
  • citalopram
  • paracetemol
  • soluble aspirin
  • temazepam

On the bad days nothing works.

I’ve had fibromyalgia since I was 14 years old. I lived most of my life with a disease that no one understands the causes of or how to treat it successfully – never mind cure it. I live everyday with exhaustion, anxiety, depression, and extreme physical pain.

And, I’m one of the luckier women diagnosed with fibromyalgia. Most women have it much worse than I do.

This is my lovely friend Cath’s experience of fibro. I also wrote about feminist mothering whilst living with fibromyalgia.

4 thoughts on “My Life with Fibromyalgia”

  1. I’m a biologist and I know microscopic amounts about fibromyalgia and I know that well-meant advice off the internet is annoying. So, a small point that you may already know and may be totally irrelevant to you: all the B vitamins work together. Of the two you list, B6 would be the bigger concern. When some B vitamins are taken in much larger quantities than others, as can happen with supplements, the others may be taken from the rest of your body when necessary. That is obviously not so good. So it might be a good idea to take some sort of broad-spectrum B food, like brewers’ yeast if you can find a kind you can stand and a way of taking it that works for you. If after a few days you find yourself liking it, that’s your body telling you there’s something in it you really need :).

    1. I’m not sure I could handle Brewer’s Yeast! A friend has suggested tumeric as well and that just tastes gross.

      1. Yeah. There is that. Some kinds are way better than others (grown on molasses, for instance, and flakes instead of powder) so it can take a bit of experimenting to find something edible. And I’m not kidding about the way your sense of how it tastes changes in a matter of four or five days if it’s indeed supplying something your body wants. It’s very weird to notice that when it happens.

        Turmeric is a major ingredient in lots of curries and other Indian dishes. Might not go with the IBS so well, but if you make it yourself, you could leave out the chillies & pepper. I think Indian food tastes much better without the burn!

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