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Fibromyalgia sufferer: 'I can't escape the pain'
Tuesday 28 October 2014
Fibromyalgia sufferer: 'I can't escape the pain'
FOR years, Sarah Pollard suffered a mystery muscle complaint that made every day a struggle. Finally she got a diagnosis – but with a sting in the tail
“I’ve always been a very physical person, having worked on farms all my life. I’d work seven days a week in all weathers and do everything from lambing and logging to looking after bullocks. I used to suffer bouts of fatigue, and there was a suggestion that I had ME [myalgic encephalopathy, also known as chronic fatigue syndrome], but I always managed to work full-time. I could cope if I slept for 10 hours each night, so I always made sure I went to bed early.
At 29, when I became pregnant with my first son Tom, I was worried about how I would cope. But during all three of my pregnancies I felt fantastic, with loads of energy. I managed to look after all the children with ease when they were young. I counted my blessings that I’d recovered from whatever had made me so tired in the past.
But then, in 2011, it came back. It began quite gradually – one day I would be OK but the next I’d be exhausted. Everything became an effort. It was like wading through a muddy field – my legs felt as heavy as lead and I’d shuffle rather than walk. Then my knees began to ache. It was tremendously painful, as though there wasn’t enough elasticity in my joints. I’d lie in bed wondering what was happening to me.
Even the simplest things, like driving my children to school, became a massive chore as just holding the steering wheel made my arms ache. Then I began to get a sensation as though hot oil was burning through all my veins. It happened every night and stopped me sleeping. At the same time, every joint in my body was sore. Whichever position I lay in, I felt awful pressure and discomfort. I tried painkillers but they never really took the edge off.
By this time I’d started to go to the doctor quite regularly, which was out of character. Nothing would show up in tests but I kept returning because I needed to find out what was wrong with me. I’d be in tears, telling my GP that I couldn’t carry on. Eventually I was referred to a rheumatologist who diagnosed rheumatoid arthritis, purely on my symptoms, as the disorder doesn’t always show up in blood tests.
I was so relieved that I actually had a recognised condition and the pain wasn’t all in my head, and now there were lots of treatments I could try. The first was steroids, which made me feel wonderfully strong. I was also put on methotrexate tablets, but these made me feel sick so instead I had to inject the drug into my stomach. But then, as the quantity of steroids was reduced, the old sensations began to creep back.
I tried a series of drugs, such as the anti-inflammatory naproxen, as well as amitriptyline to help me sleep and folic acid to stop the methotrexate making me sick. My mind was willing all the medication to work, and at first I convinced myself that it was. But eventually I had to admit that the drugs weren’t helping.
My medical team were amazing throughout – they tried so hard to ease my suffering.
Last November the condition became so bad that I moved from Devon, where I had lived all my life, to join my parents, three brothers and sister in Scotland, where they relocated about 20 years ago. Here I was assigned a new rheumatology specialist, who took me off all the medication.
I begged her not to, but stopping them finally proved that the drugs hadn’t made any difference. Soon after that, my specialist diagnosed fibromyalgia – an incurable condition that causes widespread muscle pain and fatigue.
When you have something treatable, like rheumatoid arthritis, you have hope because there is always something new to try.
But when you’re told you have something incurable, it’s terribly difficult news to take.
My specialist suggested a strict, three-times-a-day exercise regime of walking, swimming or cycling. The idea was to build it up slowly, then carry on for the rest of my life, but when you’re working and have children it’s difficult to fit exercise in.
Most people look at me and think there is absolutely nothing wrong, but so many things are a struggle. When I wake up in the morning, I’m so stiff that even getting out of bed or getting dressed is difficult. By the time I’ve finished doing up a second or third button, my arms are aching so much it’s hard to carry on. My 10-year-old daughter has to help me blow-dry my hair.
I’m only able to do light duties on a farm now, but I need to keep working as I have kids to support. Some days I just want to go back to bed – it’s a horrible feeling. I try to keep myself as fit as possible by walking, but after three or four minutes I can feel the muscles in the backs of my legs tense. Still, I try to push through it – you have to keep fighting.
Another problem with fibromyalgia, as well as the constant dull ache in your head, is that it makes your thinking very foggy. I’ll forget important things like picking up a friend’s children to take to school. That can be very hard to live with.
My kids have been fantastic, but it must be so difficult for them to see their mum getting upset, and we don’t do half the things we used to, like going out for the day. I know they understand that I’m struggling, and they do everything they can to help, but it’s the worst feeling in the world when your children have to look after you instead of you looking after them.
Recently I joined a local support group that meets monthly, and it’s the most positive action I’ve ever taken. Previously I’d turn my nose up at things like that as I couldn’t understand the benefits, but as well as getting valuable information and advice from the guest speakers, it’s the most liberating feeling. Before, I’d always feel guilty telling people how I felt – I didn’t want to burden them. But when you go to the group, everyone else is feeling exactly the same as you, so it’s possible to talk openly and honestly. I’ve met some wonderful people and they are helping me along the way.”
The Fibromyalgia Association UK offers information and support. See fmauk.org for more details.
Fibromyalgia: the facts
GP Simon Nash explains the condition…
Fibromyalgia has no known cause, no diagnostic test or effective cure. It can be found at any age, though it is rare in children.
Sufferers have severe burning, throbbing and shooting or stabbing pains in multiple parts of the body.
It is estimated that about two to five per cent of the UK population suffers from the condition (between 1.2 and 2.7 million people). Fibromyalgia is seven times more common in women than in men.
To diagnose, doctors look for moderate to severe pain on both sides of the body, above and below the waist, for at least three months. They test to see if there is pain on examination of the body at various trigger points around the neck, back, shoulders, arms and legs.
Doctors will exclude other conditions such as thyroid or rheumatoid disease and depression, which can cause similar symptoms. Patients are usually referred to a rheumatologist.
The condition can cause depression. It can also be linked to tension headaches, irritable bowel syndrome, sleep problems, bladder problems and food intolerance.
Sufferers are commonly on multiple strong painkillers, which can become addictive. Antidepressant medication can help to control the pain, improve sleep and reduce the associated anxiety and depression. Paced exercises and muscle-stretching programmes can also reduce pain, maintain function and help with daily activities.
Recent studies of the brain function of sufferers suggest they are more sensitised to pain, which alters their pain threshold, so mild pain becomes severe.
Sufferers need to find a doctor they get on with and who understands them as well as their disease, as the management of fibromyalgia is long-term and needs sympathy as much as pain relief.
The above originally appeared here.
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