New lease of life in a world of pain

At the time the young hairdresser didn’t think too much about it. But within a year the pain had spread and she lost the use of her entire left arm.

“I had to give up my hairdressing business as I was no longer able to use my left arm, which was devastating to me as always wanted to be a hairdresser since being a little girl.”

As a result she would spend most of her time at home not seeing anyone during the day, as all of her friends worked, and relying on medication and painkillers to get by.

Libby was eventually diagnosed with Chronic Regional Pain Syndrome, a rare condition which affects the limbs and can cause excruciating pain.

“When I was diagnosed with CRPS I felt slightly relieved that I wasn’t going mad and the pain wasn’t just in my imagination but I had no idea what the condition was,” says Libby. One of her main problems is getting people to understand her condition.

“I don’t look like I’m in pain, I don’t act like I’m in pain, because my arm isn’t disfigured you can’t really tell there’s anything wrong with it unless you look really closely.

“This can still make me feel self-conscious when I’m out and about, struggling packing bags at the supermarket or eating in a restaurant with only one hand to use a fork, not being able to cut up my food so I always have to go for the food that doesn’t need cutting up.

“My family were trying their best to understand and support me not really knowing what to do next. The stress my parents went through was so great that all communication fell apart within the family.”

Libby, from Roundhay, Leeds, spent most of her time visiting pain clinics and specialists trying to find something to alleviate the pain.

“The treatment I had was horrendous but I just kept on thinking that the next injection might just work and give me some relief and normality back in my life. I felt desperate.”

By this stage Libby had met her husband and they desperately wanted to start a family, but she knew there was no way she could try for a baby with all the medication she was on.

She has something called a spinal cord stimulator fitted to allow her to come off medication to have children. The implant works by stopping pain signals getting to the brain, in a similar way to a Tens machine.

When her son was born Libby was told he was only the second child in the UK born to a mother fitted with a spinal cord stimulator. Two years later she went on to have a second child, Charlotte, now six years old.

“The stimulator worked to an extent but I had to put my head at strange angles to get the current down my arm. When my children were at school I decided to have an updated spinal cord stimulator fitted which has a rechargeable battery.”

She had the new stimulator fitted in 2009 and hasn’t looked back since.

“I was able to come off all the strong pain killers. I still suffer from chronic pain and have good and bad days and have to be very careful managing my work-life balance but I have gained so much confidence knowing I can manage it more effectively.”

Libby, 39, has now set up her own business as a life coach and also as a parent-coach for the parents of children with CRPS.

“Having managed to turn my life around from being negative to feeling positive about the future, a friend suggested I could do the same for others and that’s when I stumbled across Life Coaching. I now want to help others, especially parents of children with this very cruel condition.

“I know what it is like. I have been through it and seen what it can do to parents caring for a child in chronic pain.

“If I can help the parents to deal with this condition then that will help the children. A few years ago I never thought that I would be able to get my life back. My self-esteem and confidence were so low, but now I am back in control again. I still have difficult days but at least I can look to the future and hopefully help others to do the same.”

• For more information visit www.crps-parent-coach.co.uk

complex regional pain syndrome

Complex regional pain syndrome (CRPS) is a rare condition that causes a long-term burning pain in a limb. It used to be known as reflex sympathetic dystrophy. The areas that are usually affected are the arms, legs, hands and feet. CRPS causes a severe, continuous pain making them difficult to use. The skin of the affected area can also become very sensitive, so that even the slightest touch or change in temperature can cause intense pain. CRPS is more common in women and people aged 50 to 70. However, the condition can affect people of any age, including children.