First off, if you haven’t already done this, see if you can get a nurse case manager to help you navigate the medical maze and advocate for you with doctors and your insurance. We were assigned one because of the overwhelming nature of my pain with no obvious cause. She was a tremendous help in cutting through the jungle of red tape between me and adequate care.

Second, give your son hope. My husband’s insistence that we would find out the cause and get it addressed, his certainty that I would get better and be able to sit and walk again, was the rope I clung to through the worst of it. He was there for me as you are there for your child and it made ALL the difference.

Third, take care of yourself so you’ll have the stamina to care for him. Ask for help! wherever there’s a gap—shopping, cooking, housekeeping, errands, respite care—don’t hesitate to ask family, friends or neighbors for assistance. Most people you know will indeed care enough to lighten your load but they need direction.

While I was given a pharmacopoeia of pain and nerve meds, they barely addressed the level of pain I had. Surprisingly, what worked the most for me were pain meditations. I used the Headspace app but there are many on YouTube. I also used sleep meditations as the pain prevented sleep. It’s amazing how much this calmed the sense of panic and doom brought on by extreme pain. With the calm the pain becomes more tolerable.

One last thought: Have they ruled out ankylosing spondylitis? That was a hereditary contributor to the excess spinal bone growth I had.

The cause is likely different from mine but the anxiety (ok, terror) of severe, intractable pain with no apparent cause is very familiar to me.

I hope some other parents will reach out and support you. I hope your son’s medical providers will get to the bottom of this very soon. If you have any questions for me, please don’t hesitate to ask.