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Steph: Pregnancy with fibromyalgia

This is an emotive subject for me, I feel as though I’ve come almost full circle since having my daughter in 2016. I don’t look at my first pregnancy with fond memories - because I was debilitated by hormonal migraines, and by 16 weeks I was on crutches with a condition called Symphis Pubic Dysfunction where the ligaments in your pelvis become stretchy making walking painful, this condition later saw me in a wheelchair. (Hang in there, there’s a fibromyalgia related point to this, I promise.) At 36 weeks I was diagnosed with preeclampsia, I had to be hospitalised and induced, I had to have my waters broken manually and when my daughter finally arrived she was born withdrawing from antidepressant medication I was taking in pregnancy.

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A look back at 2020 for FMA UK

The year gone by is one which we have never seen the likes of before. It presented a huge challenge for the charity, as well as our community which we represent and society in general.  
 
Lockdown measures meant our staff members working from home – something which we have been doing throughout the year. It has had its challenges, but by using Microsoft Teams, we have been able to get most things done from home. We have still managed to get resources out to people during this, but as you can appreciate, it has taken longer than usual to get stuff out due to remote working.  
 
In 2020, we saw many of our fundraiser’s events cancelled or postponed which has impacted our income, however, we saw new inventive ways of raising money, with people taking part in virtual events. Some of these include a virtual Hadrian’s wall challenge, gaming streams, sponsored head shaves, and many more. To everyone who has helped with fundraising and to those who’ve deferred their events, we say a massive thank you and appreciate all of your efforts.  

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Chris: My experience with fibromyalgia

For as long as I can remember, I have suffered with aches and pains. Some days it would get me quite low.
I always remember thinking how I shouldn’t feel like this at my age, but everyone would always shrug it off as either, growing pains, because I carry a little extra weight, the fact I’m diabetic etc…
 
It was made worse when about 8 years ago, I slipped over and hurt my back, which then gave me a weakness.
For years I would just keep going, not moan too much – even when close friends would notice something was up. I started to talk to doctors, I saw a private physio & osteopath, I was referred for acupuncture and saw an NHS physio. All helped for a short while, but nothing long term!
 
As years moved on, about 3 years ago things got worse, I noticed other joints hurt, I was losing grip in my hands so I started to seek more medical help, it was just put down to my previous back injury.
I started to feel like I was going mad, like it was all in my head. People weren’t believing me. This is when my anxiety started, and I started to feel like people were against me. 

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Katrina Irapah: My experience with fibromyalgia

13 years ago, my life changed forever. I was an 11-year-old girl beginning her life at secondary school which was already a big transition as it is in every young girl’s life. However, it was not the only change in my life, in 2008 I had developed symptoms of chronic pain. I was left with no understanding or answers as to what this pain was, how to make it better or why this was happening. I was then diagnosed with chronic pain syndrome 4 years later in 2012 although this was a diagnosis t it is where I lost a lot of my hope. Knowing there was no cure or very much knowledge to this unbearable, excruciating pain that I was experiencing 24/7 at such a young age was soul destroying. It was only till early last year that I was further diagnosed with Fibromyalgia.
 
I remember waking up every day in agony, not knowing how to get rid of this aching, stabbing, electrocuting pain that I was experiencing. But one thing I did know was that I had to get up and get my mind and body to school. Having Fibromyalgia at such a young age meant that I had to grow up and I had to grow up and face things fast because this was my reality. 
 
I am not ashamed to say that I became an angry person behind closed doors, I was angry at the world. I felt like my teenage years up until I was in my twenties was ruined. Fibromyalgia had taken so much away from me physically and mentally and I was constantly asking myself “why me?”. I would cry every day and night that this is what my life had become, I was sick of missing so much school, being sent to different hospitals, the pills, the therapies, the blood tests and all the treatments. I was determined in searching for a cure that didn’t exist and looking for answers that would never be found.

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Steph: My experience of fatigue

The article below was written by Steph and sent in to us about her experience with fatigue.

"Everyone gets tired. Pain is a part of life. Your forgetfulness might be age or stress related. Funny how everyone seems to have fibromyalgia these days....

Are these sentences ones you’ve heard since your diagnosis? Do you struggle to explain your symptoms to people? If so - me too. I think it’s easy for people to discredit a pain they’ve never felt, or assume tiredness is a natural occurrence. Fatigue and being tired aren’t the same thing, but that’s not always easy to explain, is it?

As a mum, I try to liken my chronic fatigue to that of pregnancy fatigue, it’s the only analogy that seems to do it any justice, however if you’re trying to explain this to someone who’s never experienced pregnancy, that won’t resonate either. So here’s another depiction. Imagine your limbs are laden down with lead, then imagine trying to run through treacle with said limbs, imagine living your life in slow motion and no matter how much rest you get, you’ll never get enough to speed up. Does that sound more accurate?

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Ian Taverner: How Fibromyalgia has impacted me

My experiences with Fibro
 
It took a very long time for me to be diagnosed with fibromyalgia. For years I was back and forth to doctors, specialists, surgeons, therapists, you name it.  Operations, invasive procedures, injections, misdiagnosis, medications galore, but nothing helped.  
 
Eventually I was diagnosed with chronic fibromyalgia, which I had never heard of.  I was still having a lot of invasive procedures, steroids, opioids, anti-depressants, anti-anxiety medication.  Did it help?  No!  Was I getting worse?  Yes!
 
The pain hitting all the time, pain in my body, brain fog, depression, anxiety.  Then the flares were hitting to crippling levels. 

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