Fibromyalgia in Children: No Medication Required

[J William M Tweedie]

Transcript of site video follows:

This is Dr David Sherry, director of the Amplified Pain Program at The Children's Hospital of Philadelphia (CHOP). Today I'd like to bring to your attention the exciting results of our study on childhood fibromyalgia.[1]

Childhood fibromyalgia is a very intensely painful, chronic condition that affects anywhere from 2% to 6% of the population. It is thought to be long-lasting. A study[2] of adolescents with juvenile-onset fibromyalgia followed these patients into early adulthood and concluded that > 80% of these patients still had chronic pain as adults.

We've taken a different approach to treating these children here in Philadelphia. We give them a very intense physical and occupational therapy treatment program: 5-6 hours a day of very aggressive, intense, aerobically based exercises and desensitization for children with tenderness to light touch. We also take the children off of pain medications, sleep medications, and any other medication that's been used to treat fibromyalgia symptoms.

With this program, we studied 64 children who had reported pain for about 2 years before we saw them. Pain intensity averaged 7.1 out of 10. We treated these children with this very intense exercise program for an average duration of 23 days. At the end of that time, reported pain intensity had decreased to approximately 2.5 out of 10. One year later, when the children retuned to be evaluated again, their pain had decreased further to an average of 2.0 out of 10. One third of the children reported absolutely no pain whatsoever, and one half reported pain intensity of less than 1 out of 10.

We also looked at the reported endurance of the children in the sample by conducting a Bruce treadmill protocol, where the children get on a treadmill and the treadmill speed and angle are increased every 3 minutes until the children had to say "quit." Initially, the mean treadmill time the children were able to sustain was less than 10 minutes, which was approximately the 25th percentile for age and gender.

At the end of the treatment program, treadmill time had increased to a mean of 13.5 minutes, and this endurance was very durable. That surprised us. One year later, the mean time sustained on the Bruce treadmill protocol was 12.5 minutes, which is above the 90th percentile for their age and sex.

We also looked at their physical, emotional, and school functioning, and all improved dramatically over time. We looked at fine motor and gross motor control with the Bruininks-Oseretsky test of motor performance. That assessment, too, not only increased at the end of the treatment program, but 1 year later when the teens returned and were retested, had significantly increased again.

Fibromyalgia is a very treatable condition in childhood. The symptoms do not require medications but can be treated directly with physical and occupational therapy and counselling. Most of these children can be well. They can get back into their sports; they can get back into school; and they can have a functioning, productive life. There are several programs across the country treating children with this kind of intervention, and we hope to have more.

Medscape

 

[Cort]

Transcript of site video follows:

This is Dr David Sherry, director of the Amplified Pain Program at The Children's Hospital of Philadelphia (CHOP). Today I'd like to bring to your attention the exciting results of our study on childhood fibromyalgia.[1]

Childhood fibromyalgia is a very intensely painful, chronic condition that affects anywhere from 2% to 6% of the population. It is thought to be long-lasting. A study[2] of adolescents with juvenile-onset fibromyalgia followed these patients into early adulthood and concluded that > 80% of these patients still had chronic pain as adults.

We've taken a different approach to treating these children here in Philadelphia. We give them a very intense physical and occupational therapy treatment program: 5-6 hours a day of very aggressive, intense, aerobically based exercises and desensitization for children with tenderness to light touch. We also take the children off of pain medications, sleep medications, and any other medication that's been used to treat fibromyalgia symptoms.

With this program, we studied 64 children who had reported pain for about 2 years before we saw them. Pain intensity averaged 7.1 out of 10. We treated these children with this very intense exercise program for an average duration of 23 days. At the end of that time, reported pain intensity had decreased to approximately 2.5 out of 10. One year later, when the children retuned to be evaluated again, their pain had decreased further to an average of 2.0 out of 10. One third of the children reported absolutely no pain whatsoever, and one half reported pain intensity of less than 1 out of 10.

We also looked at the reported endurance of the children in the sample by conducting a Bruce treadmill protocol, where the children get on a treadmill and the treadmill speed and angle are increased every 3 minutes until the children had to say "quit." Initially, the mean treadmill time the children were able to sustain was less than 10 minutes, which was approximately the 25th percentile for age and gender.

At the end of the treatment program, treadmill time had increased to a mean of 13.5 minutes, and this endurance was very durable. That surprised us. One year later, the mean time sustained on the Bruce treadmill protocol was 12.5 minutes, which is above the 90th percentile for their age and sex.

We also looked at their physical, emotional, and school functioning, and all improved dramatically over time. We looked at fine motor and gross motor control with the Bruininks-Oseretsky test of motor performance. That assessment, too, not only increased at the end of the treatment program, but 1 year later when the teens returned and were retested, had significantly increased again.

Fibromyalgia is a very treatable condition in childhood. The symptoms do not require medications but can be treated directly with physical and occupational therapy and counselling. Most of these children can be well. They can get back into their sports; they can get back into school; and they can have a functioning, productive life. There are several programs across the country treating children with this kind of intervention, and we hope to have more.

Medscape

It's really kind of hard to believe!

5-6 hours a day of very aggressive, intense, aerobically based exercises and desensitization for children with tenderness to light touch.

Wow.....I would give it a try but I think it would kill me.....I wonder what they think is going on....

 

[Hello!]

Perhaps these poor tormented children are telling their tormentors whatever they want to hear SO THAT THEY WILL LEAVE THEM THE F*#% ALONE!

 

[J William M Tweedie]

Perhaps these poor tormented children are telling their tormentors whatever they want to hear SO THAT THEY WILL LEAVE THEM THE F*#% ALONE!

Would be hard to fake the results. But I get where you're coming from. They'd have to offer me some good incentives just to try such a program. Went for a Dr's apptmt today and thought I was going to collapse from the pain just getting to the bus stop!

 

[J William M Tweedie]

It's really kind of hard to believe!


Wow.....I would give it a try but I think it would kill me.....I wonder what they think is going on....

That's the $64MM question isn't it. Nothing offered to explain the results medically/scientifically but there must be some clues. Maybe one loses the capacity to recover as one gets older (somehow).

 

[Hello!]

Maybe the responders have POTS which often causes pain, and cognitive imparement and can be improved by exercise.

My child's second treatment approach was exercise, for 1-1 1/2 hours/day, not a 23 day inpatient treatment program. It improved fitness levels, a sense of control, and brought the endorphin kick, but did nothing for pain, and ultimately brought on persistent ME/CFS. My child could feel it happening. We didn't know what it was until it was too late.

There are marketing videos out there about these pediatric inpatient pain programs. It is truly sadistic.

The first study on persistence rates of juvenile fibromyalgia in adulthood said that fewer than a quarter of kids with JFM still had it in adulthood. It was a small retrospective study.

I just don't buy it.

 

[Cort]

Maybe the responders have POTS which often causes pain, and cognitive imparement and can be improved by exercise.

My child's second treatment approach was exercise, for 1-1 1/2 hours/day, not a 23 day inpatient treatment program. It improved fitness levels, a sense of control, and brought the endorphin kick, but did nothing for pain, and ultimately brought on persistent ME/CFS. My child could feel it happening. We didn't know what it was until it was too late.

There are marketing videos out there about these pediatric inpatient pain programs. It is truly sadistic.

The first study on persistence rates of juvenile fibromyalgia in adulthood said that fewer than a quarter of kids with JFM still had it in adulthood. It was a small retrospective study.

I just don't buy it.

Maybe - exercise does help some people with POTS. It's a bizarre finding....

I've pushed the exercise to the limit - and repeatedly got worse except for one time. It was a strange experience. I pushed longer and harder than ever before - it was for my masters thesis - I had good reason. In fact I remember the second it switched off....I was hiking around looking for native grass spots a nd suddenly there was a shift....and my pain sensations almost disappeared. I was able to exercise - hike - better than I had for years...I didn't feel great but I was able to hike more.

Cognitively though, I think I got worse and I also developed my severe MCS during that period. I always wondered if that experience had produced some kind of shift.

After a couple of months I was back to "normal".