Jack’s CRPS Story
Jack Leigh is a 14-year-old boy from Lancashire who has been diagnosed with Complex Regional Pain Syndrome (CRPS). His family want to tell his story in the hope that they can raise awareness of this often misunderstood and misdiagnosed condition.
Here is Jack’s CRPS story as told to and written by Catherine Smyth Media:
AT 14-years-old Jack Leigh would like nothing more than to grab a football and go and have a match with his mates, sadly that is no longer possible.
When he was 10 he was in a street dancing duo that was the fourth best in the world, however in May last year he landed awkwardly after a back flip while practising a dance move and sprained his foot.
What would normally be a simple injury to recover from, led to months of intolerable and inexplicable pain and frequent visits to the doctor. He was finally diagnosed with the rare disease of the nervous system Complex Regional Pain Syndrome – CRPS – in July.
He had medics telling him he was ‘making it up’ and it was ‘all in his head’ but the pain was real and it was destroying Jack’s life.
Jack, and his siblings Kelsey, 10, and Jayden, nine, live with their parents Vicky Leigh, 36, and Lee Pennington, 38, in Bacup, Lancashire. At Rawtenstall Hub, physiotherapist Paul Phythian was the first person to mention that Jack could have CRPS.
Vicky said: “I went back to our doctor and got a referral to Royal Blackburn Hospital, but there was a six months wait.
“My younger son Jayden had a check up at the Royal Manchester Children’s Hospital for his club feet and on the same day I got a call from Jack’s school Whitworth Community High to say that he was in agony with the pain and could I collect him. So I ended up taking them both.
“At the hospital the orthopaedic consultant was very concerned with Jack’s condition and she diagnosed CRPS.”
CRPS is an often misunderstood condition and causes the patient to suffer extreme pain. Jack is telling his story because November is CRPS awareness month.
In Jack’s case it was initially just in his left foot for the first few months, but then it spread to every limb. He was in agony and he had to use a wheelchair to get about and someone else had to push him around.
Last December he was referred to Alder Hey Children’s Hospital in Liverpool.
Vicky said: “On that first appointment they made an immediate referral for admission and he remained there for seven weeks not coming home until Easter.”
Intensive physiotherapy and hydrotherapy sessions enabled Jack to slowly regain use of his limbs, albeit he can only walk small distances and still cannot bear someone to touch him.
Jack said: “The medicine affected my mood so I decided to try to take myself off the drugs and I then felt better and I became more aware of my surroundings and what was going on. I was determined to get better.
“When someone touches me it is like there is an electric shock and I get a stabbing pain, I flinch and there is a burning sensation.
“At school I use a laptop because I struggle to hold a pen or a pencil for any length of time and I am very slow at typing because each time I hit the keyboard it hurts.
“Sitting on the sofa I feel electric shocks that make me jump, my knuckles are achy and where they touch the cushion it is like they are on fire. My feet feel like they are permanently crushed in my shoes and when I walk every step is painful.
“I want people to understand this condition. They can’t see it so they don’t think anything is wrong with you.”
Vicky was told that young people who are diagnosed have a good chance of remission in the first year; but that has already past.
Jack hopes that in the future his condition will improve and one day he will be able to play football again.
Jack’s CRPS story unfortunately shows the main issues that face CRPS patients today including children and teenagers, which is why Burning Nights CRPS Support charity was set up. Unfortunately children and teenagers are often told they are ‘making things up’ or that their pain is explained away by saying ‘it’s growing pains’ or that they are just ‘attention seeking’ all of which are not true. Complex Regional Pain Syndrome (CRPS) formerly known as Reflex Sympathetic Dystrophy (RSD) is a real condition and patients are not making their pain up or trying to gain attention.
November is CRPS awareness month and we are looking for more stories like Jack’s CRPS story to share with you on our website, to show that you’re not alone either living with this horrific chronic condition or that you live or love someone with CRPS. If you’d like to share your CRPS story with us please email us with your story (maximum 1000-1250 words) and a couple of photos so we can share them and show how people have been affected by Complex Regional Pain Syndrome. We’re here to support you!