I try to joke about it, but it wrecks your life'
Imagine being so uncomfortable that sometimes you only manage one or two hours of sleep a night.
That’s a regular occurrence for Penny Hutchinson, who suffers from Restless Legs Syndrome.
The 54-year-old is in pain on a daily basis and she constantly finds herself moving her legs. She is one of several family members who have been diagnosed with the condition, but suffers with it particularly badly.
Also known as Willis-Ekbom disease, it causes an overwhelming need to move the legs.
Penny could be sat in a business meeting at work, on board a long flight or on a lengthy coach journey and she will find her legs start to shake and move around.
Although she is on medication to help with the pain, it’s a condition which, sadly, has no cure.
‘It started off with my grandma and my mum,’ she says.
‘Now my daughter and my grandson have got it. So I’ve grown up with it.
‘I first noticed it in my teenage years. I just find that I can’t keep still. I work in an office and I’m moving my legs all the time. People say “Penny’s doing her Irish dancing again”.
‘It’s a constant urge to move. I can’t keep still – if I do then it’s painful.’
Penny says the discomfort is endless.
‘It’s more annoying than anything else. It’s like a crawling feeling up your legs. It’s very difficult to describe.
‘It’s mainly in my legs, but recently I’ve noticed it in my arms as well.
‘At night time I’m moving around. The problem I have is I get very tired. At the end of the day when I come home, I just feel really tired. As soon as you sit down or lie down it starts. And then I just can’t get off to sleep.’
Penny lives with her husband Stephen, 64, in Old Commercial Road, Portsmouth. They have recently put their two-bedroom flat up for sale because the property is located on the first floor and requires Penny to walk up a flight of stairs.
As she also has chronic arthritis and regularly uses crutches, the couple have decided to move to enable Penny to get about more easily as she gets older.
She says Stephen is supportive of her needs.
‘He does massage my legs sometimes. He is very good. He’s fantastic like that.
‘There is no cure for it. There are studies into it. I have been on tablets for years but the tablets I was on, the manufacturers are having problems supplying them so they put me on new ones that aren’t working.’
Penny recently went on a family holiday to Zante and the three-and-a-half-hour flight was uncomfortable.
‘It’s something you dread because you know what you are going to be like,’ she says.
Penny is also a Pompey season ticket holder and regularly travels to away games, often facing long coach journeys.
‘I’m a big football fan so we travel to a lot of the games,’ she adds.
‘I’m not too bad at the game because you are often standing up and moving all the time. But travelling away, it affects me a lot. It can be quite nasty.
‘People must think I am really impatient because I never stop moving.
‘The worst time is at night. I don’t know what to do with myself. As soon as I get into bed it starts. Luckily my husband is a deep sleeper. But I have pushed him out of bed before.’
Restless Legs Syndrome affects as many as one in 10 people and women are twice as likely to develop it as men.
‘A lot of people do suffer with it,’ Penny says.
‘It’s from lunchtime onwards that I get it. It’s horrible. In my family, I seem to have been affected the worst.
‘I don’t think people realise how it affects you. Sometimes I’ll get an hour’s sleep and then I’m so tired the next day. They don’t realise what it’s like when you’re so tired and you can’t sleep.’
She adds: ‘It’s something that is never going to get better. It’s always in your life. Mine has got worse as I’ve got older and it does wreck my life.
‘I try and joke about it. That’s the only way I can deal with it. If you don’t joke about it, it can drive you mad.
‘I do think it’s more common than people realise. I wake up most hours, so when the alarm goes off I’m just exhausted. When I have a day off I try to go back to sleep, but I can’t because it starts again.’
Penny works for an insurance company and sits at a desk for a lot of the time, which doesn’t help with her condition.
‘I do sit down quite a lot. If you’re walking around then you’re fine.
‘I need to go out and see clients and do some networking. But it can be awkward seeing clients because if you start wriggling around they might think you aren’t interested in their business.’
Penny has joined online groups for sufferers of the condition. She says: ‘You’re always trying to find something else to help you and people do give you ideas.
‘Some people are probably a lot worse than me. they don’t work because they can’t and they don’t have a life at all. I couldn’t do that. I have to work, I have to push myself.’
WHAT IS RESTLESS LEGS SYNDROME?
Restless Legs Syndrome is a common condition of the nervous system that causes an overwhelming, irresistible urge to move the legs.
It can also cause an unpleasant crawling or creeping sensation in the feet, calves and thighs.
For many people, it is often worse at night.
Occasionally, the arms can be affected too.
The condition is also associated with involuntary jerking of the legs and arms, known as periodic limb movements in sleep (PLMS).
Mild cases of Restless Legs Syndrome that are not linked to any underlying health condition may not require any treatment.
But medical professionals do recommend that people adopt good sleeping habits by following a regular bedtime routine and avoiding alcohol and caffeine late at night.
Smokers are encouraged to quit and exercising during the day can also be a help.
If the symptoms are more severe, such as in Penny’s case, doctors can provide medication to regulate the levels of dopamine and iron in the body.
If Restless Legs Syndrome is caused by iron deficiency anaemia, iron supplements may be all that’s needed to treat the symptoms.
If you would like to find out more about Restless Legs Syndrome, then please visit the charity RLS-UK at rls-uk.org.