“I don’t think there’s enough awareness of fibromyalgia.”04 March 2021
Bethan, 26, started to experience knee pain when she was 13. As the symptoms progressed, she went for numerous tests, scans, and medical appointments. Bethan was eventually diagnosed with fibromyalgia; it took 10 years from the first symptom to diagnosis.
“I went to the doctor many times and they said it was growing pains.”
At 18, I finally had tests and I was told that I couldn’t be in that much pain.
I started to get back and shoulder pain. The pain wasn’t constant, but it was enough to know something was wrong. I had more tests with nothing abnormal showing up.
After witnessing a traumatic event, my pain became constant, and I started experiencing fatigue too. I finally found a doctor who referred me to a rheumatologist.
I was in the appointment for all of 5 minutes and he told me I had fibromyalgia.
“I was so relieved when I heard the diagnosis, to finally have a name for it.”
I also felt abandoned and useless when I got my diagnosis. The rheumatologist suggested it would get better by itself with some tai-chi and most doctors just gave me painkillers with horrible side effects.
I found groups on social media that offered support and there were people who understood me and my condition.
It was lovely to find a community and it got me through a very tough period. It inspired me to start my own blog and share my story with others, so that they knew they were not alone.
“Having a routine gets me motivated and makes me feel I’ve achieved something.”
Even the smallest task, like getting out of bed or eating breakfast can give me a sense of achievement. I’ve learnt to focus on the small things, rather than set big goals that I may not be able to achieve.
I’ve just started an online masters in Medieval Studies and I’ve found I need to adapt things to study at home.
I bought a comfortable office chair and I have my laptop on a stand, so I can adjust it. I also use pen grips, so my hands don't hurt so much when I’m making notes.
“I focus on what I am grateful for, this helps me when I’m having a bad day.”
I live by the fact that I’ve survived 100% of my worst days so far, so I can survive today.
The problem with fibromyalgia is, it’s all about trial and error, as there is no treatment that works for everyone.
“Going for a walk is essential for my mental and physical health.”
I find walking is good for my body and mind. The fresh air helps clear my mind from negative thoughts and I love going to places like forests to immerse myself in nature.
It also helps to keep my muscles strong as I’m in more pain when I don't walk. I can get really stiff, if I’m still for too long.
Books are great for when I can’t sleep to take my mind off my thoughts. I’ve even written a historical fictional novel which is in the process of being published!
It shows you can still achieve things you set your mind to, even if you have to adapt your goals.
“It’s definitely hard to get others to understand what I’m going through.”
At first, I was very private about it and just wanted to carry on as normal, but that was not healthy for me.
I was always saying yes and going the extra mile to help others, and I thought I could cope. But really it was my way of avoiding the reality that I have a chronic illness, I couldn’t just ignore it and pretend I was fine.
Now, partly because of my blog and my connection with fibromyalgia communities online, I’m much more open about my health.
“My friends are always genuinely interested when I talk about my health.”
I took part in the Versus Arthritis walking challenge last June, doing 8,000 steps a day instead of the 10,000 steps, so that it was achievable for me.
I posted daily about how I was getting on and I found my friends were even more understanding after following my life on social media.
My friends and family are my biggest support. They are always willing to listen and be there for me no matter what.
“I don’t think there’s enough awareness of fibromyalgia.”
I want people to know how fibromyalgia can affect anyone, no matter how old or young, and it can affect every part of you.
The pain can vary day to day. From a throbbing toe, a headache to painful hands.
I don’t remember the last time I didn’t feel exhausted or feel any pain. Fibromyalgia is part of who I am now, and I can’t change that.
I have to view the world a little differently to enjoy life. It’s taken me a long time, but I finally feel happy in myself.
“My advice to others with fibromyalgia would be...”
- Talk to people and support each other.
- Find what’s right for you. Some online groups may not work but others may be just what you need.
- It’s important to tell those you care about early on, so they know how to help you. Trust me, if they’re true friends, they’ll want to understand as best they can.
- Do your own research if you’re uncertain or want more information. I was misinformed many times and it took longer for me to find my right path.
- Trial and error is key. Try not to be disappointed if a medication or a therapy doesn’t work, just speak to someone and change it until it feels right.
- Remember, you are in control of you, and you know your own body.
We’re here whenever you need us.
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“Fibromyalgia is not talked about enough.”