It’s Fibromyalgia awareness day, and I remembered it the day before rather than late at night on the actual day! Go me!
It comes around so quickly, and because I’m painfully aware of it everyday its ‘special day’ can easily pass me by.
Fibro isn’t actually my main condition, but one that complicates and makes other conditions difficult to manage.
It’s also the special day for one of my other conditions (one of the rarely named ‘and also’s) but no one has heard of that one and it’s even more misunderstood than Fibro. This other condition I have is *Chronic Myofascial Pain Syndrome (CMPS) If I was in America, they would also add ‘stage 4’ – the point of no return. It’s this one that causes many issues across my whole body, and the Fibro amplifies those issues. Each condition has very different treatment pathways, which is difficult when sometimes you can’t tell them apart!
I was diagnosed with CMPS 37 years ago and with Fibro around 5 years later
It’s always difficult to know what to write about them!
I don’t like talking about them either – especially the Fibro, because it’s complicated and everyone diagnosed with it is different.
Each person who has it will have different characteristics of the illness, but with a few of those symptoms being a constant for everyone: Pain, fatigue and brain fog would be the main ones. Those three things are also the constants of CMPS, and the Fibro amplifies all three of them and more.
I’m just going to concentrate on the pain part.
The mechanism of pain in each is different. CMPS affects the lining of muscle the ends where it connects to bone (called the fascia). Each flare up damages those connections and can shorten muscle. Fibro mainly hits the middle of the muscle – lovely!
CMPS gives tender points and trigger points. The trigger points are like knots in muscles that refer pain to elsewhere – ones in the jaw can affect your eyes, ones in the neck can affect your face and so on. (That reminds me of a song….your toe bone’s connected to your foot bone etc!)
I even have these trigger points in my eye muscles which is thought to be partly responsible for my double vision. You can also get tender points with Fibro in set places. Not everyone has all of them…….I do..…What a privilege!
Fibro also worsens muscle spasm and irritates muscles already damaged and shortened by CMPS. It irritates intercostal muscles affected by CMPS and often makes it hard to take a deep breath pain free (Another reason why Covid is dangerous for me).
It’s the weak and damaged eye muscles, damaged by CMPS, that are thought to be the cause of my wobbly eyes (A form of nystagmus) and the other reason for double vision.
The list could go on!
The way I often describe the pain I’m in is:
Most days it’s like a pinball machine – where the pinball hits will hurt, and it moves around my body as fast as a pinball. In 4 minutes I can have pain in my jaw followed by my wrist, followed by my knee, then my ribs and then my hips. It’s a gift that keeps on giving with a surprise every second!
Some days the pain will settle in one place and stay for a few days.
Other days will be a stabbing pain that shoots through some part of my body like white hot heat.
What ever is happening with pain, there is always a low ache in the larger muscles – a bit like grumbling tooth ache, and a humming electrical buzz that rarely goes away.
Eye pain stays with me almost all the time – sometimes excruciating, sometimes a gnawing ache, or anything in between.
That’s my life – but it’s still a good life.
I’m not saying any of this for sympathy – I really don’t like sympathy(!) But sometimes it’s good to know so we can understand others in the same position as me.
Thanks for reading!
*The facts about CMPS are taken from American and Australian research and study. The Uk, as usual, is 10 years behind the rest of the world in researching these conditions, so UK websites rarely carry up to date information.