Fibromyalgia Syndrome: A personal story of this hidden and debilitating condition

It’s Fibromyalgia Awareness Week and International Pain Awareness Month, so felt like the right time to share my personal story of living with this hidden, but debilitating and challenging condition. I hope it will raise general awareness and help others come to terms with their own diagnoses.

ventian mask

September is International Pain Awareness Month and today (Sunday) marks the end of the annual Fibromyalgia Awareness Week (2nd-9th September).

Fibromyalgia Syndrome (FMS) hit the headlines recently after it was announced broadcaster, Kirsty Young, was stepping away from presenting the Radio Four programme, Desert Island Discs, due to this condition.

What is Fibromyalgia Syndrome? (click to expand)
Fibromyalgia Syndrome is thought to affect one in 20 people. Women are seven times more likely to have the condition than men.

Symptoms include chronic widespread neuropathic pain, chronic fatigue and long-term sleep disturbance, light and chemical sensitivity, chronic stiffness and muscle/joint pain. Many people with FMS also experience restless leg syndrome, chronic migraines, irritable bowel syndrome and more.

The symptoms of FMS are caused by a dysfunction of the central nervous system. An imbalance of chemicals in the spinal fluid send messages to the brain that result in chronic pain shooting around the body.

People with FMS are also hypersensitive to pain, feeling around three times more pain than a normal healthy person. For example, scratching an itch on your arm just slightly too firmly can feel like your skin is being pulled apart by red-hot knives.

Scientists have been researching the condition for many decades and over ten years ago German scientists successfully discovered the DNA fingerprint for FMS, leading to the conclusion that the condition is genetic. It’s thought to be triggered by either a virus, trauma to the body (such as giving birth or an operation), or an emotionally stressful event.

There is currently no cure for FMS. Patients learn to manage the condition through a controlled drug regime and changes to lifestyle.

My own diagnosis
I’ve had FMS for 17 years, but it’s highly likely that if you’ve met me, you wouldn’t be aware of this.

It’s not something I frequently talk about – until recently only about ten people on the Island knew I live with this chronic and debilitating condition.

I’ve preferred to keep it that way – but feel that now is the right time to open up and tell my story.

Why? It’s not to receive your sympathy (I am very certain about that), but because there are many people trying to live with the condition, and struggling – 1 in 20 of the population – and to most of the public it’s hidden.

Life might be easier for those living with the condition if there was a better understanding ‘out there’ of how challenging this condition is to live with.

Until Kirsty Young hit the headlines, there’s been very little general discussion about the condition, despite it impacting so many people.

In the beginning
My story is probably no different to the many thousands of other people who live with FMS. I first began feeling the symptoms when our daughter was about a year old. It started with chronic fatigue, finding I couldn’t walk to the local park without having to stop along the way and then being totally exhausted by the time I got home.

I put it down to being a sleep-starved Mum, looking after an active toddler, but then the pain arrived.

Having been through childbirth the year before, I understood only too well what intense pain felt like, but this was something different. It was an unexpected, terrifying, paralysing and startling pain.

I was very lucky to find a GP who was aware of the condition and very sympathetic. Some had not been so lucky and struggled to get a diagnosis for many years.

After countless blood tests, a bone scan, MRIs and more, I was diagnosed with Fibromyalgia Syndrome and sent on my way. From memory, I was given a leaflet and told there was a support group that met at the hospital, but that “they moan a lot and are much older than you”.

The early days
The first couple of years I struggled to maintain a normal life. I tried many different drug regimes, all with unwanted side effects that resulted in – at one point – having to pop around 20+ tablets a day. I was housebound a lot of the time, unable to get about without the use of two walking sticks. At home, I needed to be close to a grip rail or surface I could lean on in order to move from room to room.

I had difficulty showering and dressing myself. I had gone from being the carer in the household, to be being cared for. It was a soul destroying position to be in and my previous active life was a distant memory.

The turning point
Due to lack of sleep, my hand-to-eye coordination was so skewed that I regularly sliced the top of my fingers when preparing food. I burnt my hands when making hot drinks.

I had so many falls that my GP said I should seriously start considering using a wheelchair to get around outside the home.

This was one of the turning points for me. That, and the positive approach I encountered from the support group that the Rheumatologist told me was ‘too old and moany’ for me.

They helped me come to terms with the condition and change my approach. To focus on what I could do, instead of what I couldn’t. I started realising that I could live a happy and fulfilling life, despite the FMS.

Proactive, positive approach
I became more proactive, attended conferences and national events. I read all I could, including medical research papers (not always an easy task with ‘fibro fog’ to contend with), I learnt how to trick my brain into ignoring the pain signals (it doesn’t always work, but it became second nature) and I started a programme to become more mobile.

I found a drug regime that helps considerably in taking the edge off the pain and allows me – to those looking from the outside in – to lead a ‘normal’ life. That, and the incredible support from my husband and daughter, as well as family and friends.

A grieving process
However, coming to terms with losing the life you had and will never get back is like dealing with grief.

There are several stages you have to go through to reach the point of acceptance. Shock, anger, guilt, denial, depression and then hope.

It’s a challenge
Don’t get me wrong, it’s hard. Very hard. I still suffer daily with chronic pain. Just because I’ve trained my body and mind how to cope with it, doesn’t mean the symptoms aren’t there.

Recent weeks have become incredibly hard – increased pain which brings frustration and confusion over why that might be.

I haven’t slept properly for over 18 years. I usually wake at least every hour through the night and haven’t slept continuously for more than three hours for over a decade.

I have the fibro fog (with great swathes of my vocabulary disappearing in the abyss), chronic stiffness every morning, restless legs and many more of the associated symptoms.

A hidden condition
So if you see me in a meeting and it looks as though I could put my head on the table and fall asleep right there and then, or if you spot a typo in an article that I’ve missed – and there are some of you who seem to take great joy in publicly doing so ;-) – if I unexpectedly get up and walk out of a meeting I am reporting live from, or a gig where I can’t stand any longer, perhaps you might now have more of an understanding of why that is.

As I said at the top of this article, I’m not looking for sympathy, but for more people to understand that this hidden condition is pretty hard work. And perhaps if you know someone with FMS, this might help you understand what they are going through.

If you have been recently diagnosed with FMS, there is hope. There are many well-informed Websites with lots of information on drug regimes, coping techniques and links to support groups (on and offline). A great place to start is the Fibromyalgia Action UK.

Image: zoltan voros under CC BY 2.0

Opinion Piece

Sunday, 9th September, 2018 8:27pm

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Filed under: Health, Island-wide, Isle of Wight Opinion Pieces

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10 Comments on "Fibromyalgia Syndrome: A personal story of this hidden and debilitating condition"

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rachelrocks

Thank you so much for such an informative and personal article. As someone who has Fibro and M.E – these conditions get such negative press and I STILL get comments about “Yuppy Flu” and made to feel like I have to justify my condition. Thank you for a great article. x

Vix Lowthion

What a stunning analysis of a syndrome too many face alone. I have friends and family members who live with Fibromyalgia and they really are an inspiration. A perfect example of why it’s good to talk and increase awareness even further. Thank you so much!

Jonathan
Sally You are already an inspiration to so many of us. Nobody who knows you will think any less of you for giving us this insight into your life, and everyone will hopefully treat you in the same way as always. I certainly shall. I’m glad that you have found ways to push through the undergrowth and keep up the good work. If there are ways I… Read more »
tr2015
I add my thanks to those already logged. you are an inspiration to others in your determination not to let it overwhelm you. I hate any condition labeled ‘syndrome’ as it smacks of ‘in your imagination’ whereas what it actually represents is that there is not yet sufficiently known and recognised by the medical profession, although your link to the definition shows progress is being made. I… Read more »
Rea Sheldrake

Thank you for sharing your experiences of this awful illness. I live with Fibro, as well as other chronic medical issues, and I am would not wish it on anyone.

confidential

Than you for sharing Sally. It has encouraged others.

bones

The Rheumatologist who described a Support Group as ‘too old and moany’ should perhaps consider a career change. One that needs no empathy perhaps ?

minnieb
It has been really difficult to log in here and comment today! I have a closely related syndrome diagnosis and fully appreciate your article. However I do dispute the statistics as I know from personal experience people who have this diagnosis because they have spun a convincing story to their GP, As yet there is no clinical diagnostic test so this is a great way to get… Read more »