Kelly Bisgrove: My experience with fibromyalgia
I wanted to share my story, to raise awareness on the long-term condition called Fibromyalgia, and
how it has been affecting my life. Maybe some of you can relate?
It’s a condition which can cause widespread pains/aches, extreme tiredness, muscle stiffness, ‘fibrofog’, headaches, and IBS; (to name a few). What I’ve learned from this is there’s a range of symptoms, and there is no test to prove it – which is why it seemed so difficult to get a diagnosis.
A year ago, I went through some trauma which changed my life. For weeks, I was ill and felt
miserable, it became difficult to get out of bed every morning - this is when my symptoms
worsened. While working full-time, it was a challenge to take time off work, going back and forth to
doctors/hospitals to get blood tests, and medication to help me through the process.
Amber Price: My experience with fibromyalgia and why I set up a support group
I've always been a very positive, happy person, but being diagnosed with Fibromyalgia when I was 25 changed my life immensely. I went from a hardworking, busy individual to having to change my whole lifestyle to manage the many symptoms that come with Fibromyalgia. I lost my career in Business Travel in the Oil industry, lost many friends who could not understand the condition and how it affected me, and lost a lot of my confidence in daily life. However, I refused to let the condition bring me down. I made it a point to find projects to do and ways of working from home, to keep my mind busy, giving me purpose and not allowing myself to get depressed. However, it can be very challenging and as much as this helped me, I still found myself extremely isolated and lonely. So, I then decided this year to see if there was anyone else in the community with the condition who would be interested in joining to make a support group. I posted on our local village page on Facebook and was surprised to see lots of other ladies and a few men with the same condition in the village and nearby. I then contacted FMAUK for support in starting a new group and received lots of helpful documents and handouts to start it up, as well as contacts to help with any questions I had.
Georgia: How fibromyalgia impacted my life
I was always very active and driven. I did a sport or activity every night of the week. I loved Musical Theatre and sang and danced almost every day. I wanted to pursue Musical Theatre as a career and was training very hard to get there. Unfortunately this did not work out as I would have liked it to because of my fibro. I am very lucky to have very supportive people around me. My family have been great and support me through the anger, the pain and upset, the career downfall, the mental health and the tiredness. It has had a massive impact on my life, but I refuse to let fibro define me. I push through my pain everyday so I can provide a good life for myself and any future children I have. I'm still the same driven, ambitious person that I was before but now I have to fight myself more to have the energy to get there.
Exercising during lockdown with fibromyalgia
When the suggestion of working from home was first mentioned in relation to Covid-19, I had no concerns. Due to having fibromyalgia, there have been several occasions over the years when I’ve had to do exactly that due to being unable to go into the office. Normally that would only be for a day or two – with the longest time I think being two weeks – and more often than not I would be sitting on my bed using the laptop and propped up with pillows.
However – this was going to be more than just a couple of weeks – so I had to consider the best option for working. My chair is a rocking/nursing chair and I was fortunate that we had a small folding table which was a good height next to it. With the help of a cushion I was able to get a fairly comfortable work set up – which while not perfect, was suitable for a day’s work.
How many times have you heard the advice to “pace yourself?"
The article below was writen by Stacey Lake regarding her fibromyalgia management and highlights a new audio channel which her wife and her are running.
It’s recommended to Fibromyalgia warriors to do 20 minutes of activity and then rest. However, what nobody tells you is how long to rest for.
There’s no hard and fast rule for this, unfortunately. I know that is probably not what you want to hear, but as with most things concerning Fibromyalgia, nothing is certain. No two of us are the same and everything depends; how your pain is on that particular day, how your fatigue is, what your circumstances are, how your mental health is, whether you need to do dinner, pick up the kids, go to work, walk the dogs, do some chores, even something as simple as taking yourself to the toilet or turning on a light. On any given day our abilities vary and that is one of the most frustrating things about this disease in my opinion. Luckily, we live in a time where help can be, quite literally, at our fingertips.
Corona Virus and Fibro Video
Please find below our recent video about coronavirus and fibromyalgia. More info @ www.fmauk.org/coronavirus