How do you teach a child to live in pain?

I’ve been trying to write this post for quite a while.

I know how to teach math, science. How to tie your shoes or ride a bike.

But how do I teach my child to live in pain?

It seems like we swirl around in a tornado of medical full of doctor visits, blood test, MRI, Scopes. Then Physical therapy, occupational therapy. While the doctors say try this, try that. Nope not this maybe that?

When the dust settles and you can start to feel the earth beneath your feet again the hammer drops…

“We believe your child’s pain is coming from his nervous system being overactive. Amplified Musculoskeletal Pain Syndrome.”

AMPS goes by other names as well; complex regional pain syndrome(CRPS), juvenile fibromyalgia, diffuse idiopathic pain and localized idiopathic pain.

Basically he feels more pain than average and his system is overactive sending pain signals when there is no physical cause(at least no known cause). They did say that they theorize T’s hypermobility(Ehlers Danlos Syndrome) lead to many micro tears and injuries to his ligaments that it triggered his AMPS.

We sat in the pediatric pain clinic (sad that that is a needed thing) while they explain that the only “treatment” for the condition is intense physical therapy in an effort to “reset” his system. Along with work to help him cope and deal with being in pain.

So how do you teach a child to live in pain?

I don’t want to just deal with it and get by I want him to LIVE and THRIVE.

So we reach into our goody bag of pain relief options.
Want to know more visit my PT post where I talk about it!
Pain Relief goody bag

We try to get activities spread out to help combat fatigue and over extending our energy. Don’t want to deplete those spoons! We gently increase and stretch out the amount that he is active to build up his tolerance.

We have dance parties and about self care.

And in the background Momma keeps reading, learning and pursuing the best care.

I can say it’s truly been a Godsend that we were homeschooling before this. I don’t know how we would have handled all this PLUS the need to be at Public School five days of the week. We are able to snuggle in PJs, with a heating pad and push forward with schooling.