Chronic illness · Fibromyalgia · Health

Living with a flare

As I type this I am sat on my sofa in my PJ’s watching the Eurovision Song Contest and having a chuckle at Graham Norton’s quips at each artist. Its my annual guilty pleasure and even though I am in the midst of a fibro flare, I REFUSE to miss it!

The other significance of today is that it is International Fibromyalgia Awareness day. I am writing this particular blog to raise awareness of the disease and its effect on sufferers.

This time a week ago I was feeling a bit run down and as if I had a bit of a bug coming on. Little did I realise that I was about to have my first experience of a flare since getting my fibro diagnosed and, well….what I thought was….under control. After a few days of feeling like I did before starting medication in March, I realised I needed to see my GP who informed me that I was “in a flare”.  I’m very lucky to have an amazing GP who is extremely supportive. She doubled the dose of one of my meds and I will be seeing her again in 6 weeks or before if needs be.

I suppose I started writing this because I wanted to explain what a flare feels like. I seem to be quite unlucky as I seem to suffer from most of the “possible” symptoms of Fibromyalgia.

One of the symptoms I get is excruciating abdominal pain, I suffer with IBS every day anyway, but when my fibro is bad it seems to turn into Colitis. This means lots of time on the toilet in lots of pain and sometimes lots of blood. The most common fibro symptom is widespread body pain. My painful spots are my hips, lower back knees and shoulders……..but at the moment I have pain EVERYWHERE! I am struggling to hold things because my hands and fingers are so painful. It hurts to walk, to sit down…..it’s basically impossible to ignore the nagging pain all over your body. This can make it impossible to get a decent nights sleep…….and to top it off chronic fatigue is also a massive issue for me. You know that feeling of utter exhaustion that you have only felt a couple of times in your life? That’s how I feel most days.

I also suffer with some very strange sensations on my head and around my face….I get a tingling sensation at the back of my head that works its way forward over my scalp to my forehead, then I get a sharp pain that sits above my left eye and usually develops into a migraine. I also get tingling feelings that spread from my left ear across my face to above my lip and across my nose, leaving my face numb. This is usually when I get twitches under and over either eye and around my mouth. It’s a bit bizarre to see, but even weirder to feel!

Another of my symptoms is vertigo and when I am in a flare I get a sensation of shaking……like a tremor that goes with it. Sometimes it is visible, other times it isn’t. Sometimes I can feel it only in my arms, other times it feels like its going through my whole body and I honestly feel like a nodding dog!!

One of the most distressing symptoms that I have experienced is chest pain. It isn’t like a dull ache, it actually feels like someone is stabbing me right in the centre of my chest. When this comes on I have to work really hard not to panic and make it worse. I’m getting used to it now, so don’t tend to get as anxious about it as I used to.

My cognitive function is a massive issue when I’m poorly like this. I forget things. I bump into things, I drop things. I’ve fallen over. I find myself having what can only be described as vacant moments where I genuinely have no idea what I’m doing! I often struggle to find words and I’ve noticed that my vocabulary has reduced greatly. I forget peoples names while they are stood right in front of me. It’s all a bit frustrating!

I have joint hypermobility syndrome, and when I am in a flare you can literally hear my joints creaking, cracking and popping! It can be quite painful and can sometimes feel like my joints are about to bend in the wrong direction!

To be honest, I could go on and on. But, we’re on song number 25 at Eurovision (Cyprus) and its 10.05pm which is about the time that my brain goes into shut down. Please, please share this post if you can. Even if I can just make a handful of people more aware of Fibromyalgia I would be so happy!

Thanks for reading you lovely people.

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