Glasgow woman fundraising for treatment after incurable rare chronic pain diagnosis

A woman says her life has been “ripped away” after being diagnosed with a rare chronic pain condition.

Mairead Keen has lived with Complex Regional Pain Syndrome (CRPS) – a persistent, severe pain condition which is usually caused by injury – for eight years.

At the age of 14, she suffered severe headaches, which doctors identified as a viral infection damaging her nerves, disrupting the signals travelling from the brain to the body.

The CRPS diagnosis left the then-teenager confused as she had never heard of the incurable condition, which is estimated to affect 26 in 100,000 people.

Now aged 22, Mairead feels like she is “walking on glass” and that her future has been put on hold.

“I had a lot of plans when I was younger for what I wanted to do with my life”, Mairead told STV News.

“That has all been ripped away from me. Now I live on painkillers and rarely get to leave the house.

“I only get one or two days every couple of months where the pain is easy to deal with. Other times I’m in bed or on the couch, with a lot of painkillers.

“It feels like a stabbing pain and an intense burning sensation. It started in my feet and my legs, they have always been the main point of pain, but a year after that spread all over my body.

“I am able to walk, but it just feels like I am walking on glass.

The 22-year-old feels like she is "walking on glass" and that her future has been completely put on hold. — The 22-year-old feels like she is “walking on glass” and that her future has been completely put on hold. Supplied

“My stomach even hurts when I eat. It just makes me sad, there is just a lot of sadness.”

For the first two years following her diagnosis, Mairead underwent numerous therapies with the help of NHS staff. However, after she started receiving care as an adult, a lot of her support network was taken away.

The 22-year-old’s mum, Marie Keen, believes there is “no help out there” for people living with a chronic pain condition.

Marie Keen told STV News: “When Mairead was first diagnosed, she was in paediatric care, she got water therapy, physiotherapy and a psychiatrist.

“As soon as she turned 16, all that was taken away from her. She has never had physio since, and there is no support anymore.

“It feels like there is nothing in Scotland to help people like Mairead. There is just no help out there.

“My daughter is 22, but she feels like an 80-year-old.”

‘Last chance to get my life back’

Mairead is now raising money to undergo Calmare Therapy in Ireland.

The treatment, also known as scrambler therapy, works by replacing pain signals with “non-pain” information, potentially offering relief for various conditions like nerve pain, cancer pain, and opioid-induced pain.

It involves applying electrodes to the skin around the painful area and delivering low-level electrical impulses that are designed to override the pain signals.

The NHS has not yet approved it for routine commissioning due to insufficient evidence of its effectiveness and cost-effectiveness.

But, the leading UK specialist clinic, the London Spine Unit, believe the treatment is an “efficient and safe alternative for several different types of refractory chronic neuropathic pain, with a very rare possibility of adverse events”.

Mairead hopes the therapy, which is available in the US, Australia, Ireland, Germany and Italy, will give her the chance to “live a normal life”.

“We have tried different things over the last eight years, but nothing has ever worked”, she explained.

“I feel like I am currently not living my life properly. We researched scrambler therapy, and it had a success rate between 80% to 90%.

“So I see this as a last chance to get my life back. I want to live a normal life.

“I want to have a family, a home and a job. All these simple things that were taken from me.

“It is a very lonely condition.”

Public health minister Jenni Minto said: “I am determined to improve care and support for people living with chronic regional pain syndrome. Everyone should be able to access the services they need, when and where they need them.

“We continue to work closely with the NHS to improve how services are accessed and delivered for patients, and we are making progress on the issues that people with lived experience of chronic pain have told us matter most to them.”