Saturday, 12 May 2018

Fibromyalgia Awareness Day

Today, May 12th 2018, is Fibromyalgia Awareness Day and, as such, the perfect time to talk about my recent diagnosis which I mentioned in my March Roundup and how it affects me.


What is Fibromyalgia?

In simple terms, Fibromyalgia is an invisible, long term illness that causes widespread pain throughout the body.  But that's in simple terms. It comes with a long list of symptoms that can vary from person to person. Some of the more common symptoms include:
  • Pain in different parts of the body.
  • Extreme sensitivity, knocks and bumps can be more painful than normal.
  • Stiff joints, particularly first thing in the morning or after being sat down for a while.
  • Fatigue.
  • Fibro fog - difficulties with memory, slow or confused speech and poor concentration.
  • IBS.
  • Dizziness.
  • Clumsiness.
  • Restless legs.
  • Tingling, numbness, prickling or burning sensations in the hands and feet.
  • Painful periods.
  • Anxiety.
  • Depression.

What causes it?

There is no definite known cause but there are thought to be a number of factors that could be involved:
  • The nervous system changes the way pain messages are sent through the body.
  • Chemical imbalances.
  • Sleep - a lack of deep sleep means that the body isn't getting the rest it needs.
  • Genetics.
  • Emotional or physical stress e.g. injury, giving birth, death in the family or the breakdown of a relationship.

How does it affect me?

I'm not entirely sure how it started for me but I suspect it could be due to emotional stress.  I know many don't believe in this as a trigger but looking back, I think the warning signs where there in my late teens. Family life wasn't the most settled and aside from that, I was also badly bullied through school.

Many of the above symptoms affect me.  For as long as I can remember I have struggled with fatigue, long before I had children. I can remember when I still lived with my Mum, going into work and sitting at my desk, wondering why I was so tired when I got into the office.  

Fast forward 10+ years and its far worse than it ever was.  Some days I wake and it feels as though I have woken with the flu, that all-over exhaustion and it takes ages to get moving.  Some days I wake up, get myself washed and dressed and by the time I sit down with a coffee, I could quite easily fall back to sleep (and some days I have). Of an evening or on my days off, if I don't keep moving and I make the mistake of sitting down on the sofa, I will often fall asleep.  I often feel heavy - my head is hangover like where I am so tired and my body will ache everywhere. 

Another symptom I have struggled with for a long time is stiff joints and painful 'spots'. If I stay sat down for too long, when I stand up my back and legs have stiffened up and when I first start to walk about it feels as though I am 'off balance' and limping.  I have days where somewhere will be incredibly painful, e.g. my foot and it hurts to put weight on and will throb yet I can go to bed and the next day it will be fine.  

Some new symptoms have started to creep in and something that I have started to struggle with recently is my legs, hands and feet. My feet get really sore and I've noticed that I am getting some tingling and numbness in my hand and feet, my feet if I'm sat still for a period of time. I've also been getting restless legs, which I've always had at night but never during the day, until now. I'm also struggling with memory recently, walking into a room or going to do something and then completely forgetting what it was. I know this happens to everyone (or most of us!) but it has been happening far more frequently than it had been.

I won't list all the symptoms I have but there are many and it has certainly been an eye opener. My Mum and Aunt both have it and my Mum has suspected I had it for several years but because my Doctor wasn't the most helpful I never spoke to them about it, until he retired this year and I was allocated to a female Doctor. Whenever I had mentioned it previously, I was dismissed because I had children and that was perfectly 'normal', whatever normal may be! It was only when I saw the female Doctor that she looked into it and actually listened to what I had to say.

How is it treated and what is the prognosis?

At the moment there is no known cure. 

Treatment-wise, because there are so many different symptoms no one treatment will work for all of them and its often a trial and error to find medication that suits.  There are numerous medications that can be tried including painkillers, antidepressants, sleeping tablets and muscle relaxants.  

Some exercise is thought to be beneficial although for many that can difficult because of the pain associated with it.  Some complementary therapies, such as acupuncture, are also thought to be beneficial.

For me, at the moment I have painkillers which I have been somewhat reluctant to take because I don't want to become reliant upon them.  As I have shared, we are getting a dog and I'm hoping that getting out and walking him once or twice a day will really help to keep me moving, on top of my daily 10,000 steps. I am aware that this could change at the drop of a hat and will have to approach those times as and when they happen. The prospect of what the future could bring is, quite frankly, worrying, especially as I have the girls to raise.

I just wanted to leave you with some pinned images I have found which go someway to explaining the different feelings people with fibromyalgia have.  I have also listed some websites which you may find useful.

I hope you've found this post informative. Do you suffer from fibromyalgia and, if so, how do you treat it?  I would love to hear from you. 



(Source)






https://www.nhs.uk/conditions/fibromyalgia/
http://www.fibroduckfoundation.com/index.html
http://www.fmauk.org/2-uncategorised/52-what-is-fibromyalgia

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6 comments

  1. Goodness. I'd never heard of this but I actually think I might have it. I thought it was some sort of arthritis but it's sounding a lot like this...I will follow your posts with interest.

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  2. Thank you for sharing your personal experiences with us and raising awareness of what sounds like a terrible condition. I really hope Buddy helps you to keep on top of the daily steps, in turn helping you with your symptoms. Having the pups has certainly helped get me and the kids more active! #twinklytuesday

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  3. It sounds like really awkward condition to live with, so many widely differing symptoms. I hope you find a way to manage it effectively, or at least as best you can #twinklytuesday

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  4. I've never heard about this before - looking at the pics you posted it looks like it can be quite intense. I know what you mean when you say you don't want to get reliant of medication but if the pain is severe, you need to take it. Hope that you find a way to manage it so that it does not consume your life.Thanks for sharing and raising awareness about it.

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  5. I know a bit about this because as a journalist I've interviewed people with the condition before - it sounds like you're managing it well & raising awareness is great #twinklytuesday

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