CFS/ME & Fibro

Fibromyalgia Awareness Week – 6th-14th September 2014

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As it’s Fibromyalgia Awareness Week here in the UK, I thought that I would tell how this condition affects me. It’s not as well known (in my experience) as ME (also called CFS), so this week gives me an opportunity to highlight this chronic illness and how it affects my everyday life.

Along with my diagnosis of CFS two years ago, I was also diagnosed with Fibromyalgia. It’s a condition characterised by widespread pain, hypersensitivity to pain, chronic fatigue and sleep disturbances. I always have pain (varying day to day) in my legs and feet, which has reduced my mobility and left me pretty much housebound. If I do go out, I wear gel pads in my shoes to give my feet some relief from the pain of walking; and I use a walking stick in case I feel unstable. I tend to get more pain on my left hand side (leg and arm), which then can spread rapidly across my back, neck and shoulders. Not only is the pain muscular, I can feel in in my joints too – almost as though I have arthritis. Because of all this pain, I have to take strong painkillers every day.

Symptoms of Fibromyalgia
Symptoms of Fibromyalgia

Certain parts of my body are also sensitive to touch – the tops of my arms and legs feel this the most, although not exclusively. Because of this, I have bought a blood pressure monitor that goes round my wrist, as opposed to the top of the arm. Having my blood pressure done at the doctor’s surgery is like having my arm ripped off, so having a wrist version means I can avoid that pain. This sensitivity also means family and friends have to be careful when hugging and such-like, as even that can be uncomfortable. There are other symptoms. I have Restless Leg Syndrome (also associated with CFS) and Sleep Starts – that moment when you’re about to sleep and your body jerks you back awake. I can relate to many of the symptoms listed in the above info-graphic.

Because of the pain and sensitivity, I’ve had to change how I do things in my home. A kettle is too heavy to use, so I have a one-cup hot water dispenser. Saucepans and oven dishes are also a problem because of weight, so I have an electric slow cooker and a soup maker to try and have freshly cooked food. There are still household jobs to be done that have no alternative method though – laundry and ironing for example. I even have difficulty washing my hair, as raising my arms up for an any extended time can be agony.

So that’s an overall view of my life with Fibromyalgia. If you would like to learn more about the condition, I’ve listed a few websites below which give more in depth information.

Fibromyalgia Association UK

Fibro Action

UK Fibromyalgia

Fibromyalgia Support N Ireland

 

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4 thoughts on “Fibromyalgia Awareness Week – 6th-14th September 2014

  1. It is only a person with Fibromyalgia who can describe so well the extreme distress of this illness. I,m sure there are others out there who recognise the symptoms and can relate to the seemingly never ending pain, fatigue and sleeplessness they endure on a daily basis. Not being able to hold down a job because of it must be soul destroying.

    Thank you Charlotte for keeping us all aware of this illness. It is so easy to forget about it when we do not suffer the same way.

  2. Amongst other disorders, I’ve had a diagnosis of Fibromyalgia for about 12 years now I think. I get lots of pain, but the thing that reduces my quality of life, to the level of sometimes not worth living, is the fatigue.

    1. This is the thing that people find very hard to understand about these types of illnesses – that the symptoms really do take away our quality of life. And it can be very difficult to pace with the symptoms, even with the best intentions and motivation. And the pain itself is tiring, on top of the fatigue that is already there. Have you found any ways of helping your everyday life?

      1. Pacing helps, as well as a good sleep routine and regular meal routine, but it’s very difficult for me to achieve owing to my family set up. My youngest, almost 18 is, amongst other things, Aspergers and ADD. The whole family are fairly ADD and night owls. Avoiding people with viruses helps as I can get completely floored by a virus. I do a small amount of very gentle, basic yoga at home. I’m current;y enduring a very severe flare up, which is the longest lasting I’ve ever had. I’m at the start of the menopause though and that’s given me insomnia which definitely does not help, plus we’ve had huge stress and now a nasty virus. I’ve tried all kinds of things, nothing really works.

        If things are bad I take my pain relief regularly, rather than waiting til the pain is bad. I find that helps. I’ve found nothing that helps with the fatigue unfortunately. I haven’t left the house, except for appointments, in about 3 months. It’s pretty dreary. Hopefully this flare up will end soon.

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