From a very interesting article that appeared on December 13 2013:
One moment, Albiera Camaiora — Albi — is a stellar free-diver, a 13-year-old from Lima, Peru, with the lung capacity to hold her breath for more than two minutes and the daring to plunge deep beneath the ocean surface, up to 70 feet, unaided by scuba gear.
“One day, she falls down in the shower,” her mother, Claudia Calderon, explains at Children’s Mercy Hospital.
The injury is nothing, a trifling hip bruise.
But soon after, while on a skiing trip to Colorado, Albi is struck by crushing headaches from the back of her neck to her eyebrows. Her father and mother think it is the altitude, or maybe a sinus infection, until the pain spreads to her shoulders and back. On the return flight to Peru, it grows worse.
“That’s when we start a nightmare,” her mother says.
Over the next weeks and months, Albi sees more than 40 physicians from around the world — neurologists, cardiologists, rheumatologists, psychologists, psychiatrists, orthopedists, endocrinologists, experts in tropical diseases. They draw blood and analyze urine. They give her X-rays and MRIs. They prescribe pain pills. They can find nothing medically wrong.
By the time she flies in August to a children’s hospital in Miami, the pain has spread to her entire body. Unable to walk without horrendous difficulty, she uses a wheelchair. She can’t lift her arms. Her mother must spoon-feed her and brush her teeth. Touching her skin sends her into excruciating paroxysms.
Albi is incapacitated.
“We are desperate. We are afraid,” her mother says. “… You stay awake at night. You don’t know what’s going on. It’s horrible.”
Then comes a call from a relative, a journalist in Los Angeles who has heard of a handful of children’s hospitals nationwide that see kids with symptoms like Albi’s. Within a day, in mid-September, the seventh-grader and her parents are on a plane to Kansas City.
“As of today, we are done with the wheelchair,” rheumatologist Cara Hoffart, 34, tells the family at Children’s Mercy.
“Get up. Put it aside. Walk.”
“As of today, we are done with the medications.”
Hoffart knows what is wrong.
I’d never heard of the diagnosis “Amplified Musculoskeletal Pain Syndrome” before, from the description above it sounds quite horrible.
From the interviews and explanations in the article, you can pick out a lot of the real nasties of severe and chronic pain; allodynia, hyperalgesia, central sensitisation, neuroimmune and HPA axis activation. There is also the broader psychosocial impacts not only on the sufferers, but also their families.
There are positives here – the children are doing well with treatment it seems.
But I can’t help but feel that there is something missing. Amongst all the intensive physiotherapy, painful exercise sessions, desensitisation approaches and psychological counselling, education is not mentioned, not at all, not even once.
This might be result of the reporting, maybe it was mentioned but ‘The Kansas City Star’ reporter didn’t think it was important?
Maybe its just not part of the program?
The following quote stood out for me:
“If it hurts to do something, that’s what we tell them you should do,” Hoffart said, which is one of the prime reasons they tell kids on day one to get up from their wheelchairs.
Could some pain science education help here? Perhaps a few minutes on the “Drug Cabinet in the Brain“, or an appropriate explanation of the immune system and cytokines in pain; a bit on immune buffering behaviours?
An explanation, or two, about smudgy brain maps, disinhibited neurotags and spreading pain? Maybe a bit of education for mum, dad and the rest of the family too?