"Suffering the Slings and Arrows of Outrageous Fortune"

No sleep

Still no joy on the sleep front. Em has had a few nights of falling asleep ‘early’ at 2 or 3 am. But she has also had several nights of being awake until 4, 5 or 6 am. She didn’t fall asleep until 8 am this morning. Poor kid. I am at my wit’s end. How can she not be completely zonked by 10 mgs of flexeril? At 5 am she took more tramadol and tylenol but still was in such pain she couldn’t sleep.

Either the flexeril is simply not sufficient to help her sleep – she does seem to develop a tolerance to it quickly – or her pain is overcoming even a higher dose of something that should knock her out. Probably a little of both, tbh.

So, now we are back to her back. Everything always comes back to her back. It keeps her awake. It tortures her. So, is it just ‘normal’ EDS pain or is there something mechanical? Lots of things could be going on but what exactly is it and is it serious?

The million dollar question, as always, for an EDSer is ‘do we need to go to the dr?’  It is never an easy question to answer. The average person, certainly the average parent who had a child with such pain, would make an appointment asap or head to the emergency room. It just isn’t that easy for us. Pain is a constant for Em so we cannot use that as our guide. Any injury is usually invisible – no swelling or even bruising, so we can’t rely on looks alone. And any trip to the emergency room is fraught with danger – the wrong person could actually cause more damage, not to mention that it is a lot of money to be told ‘everything is normal’. Even a trip to the doctor, who knows her and her condition, can be pretty pointless.

For all of my waffling on and on for weeks, I think I have finally come to the conclusion that we need to go to the ortho and get her back checked out. I am still convinced that it is tethered cord syndrome, but we could also be dealing with scoliosis, damaged disks, stenosis, spondylosis and much more. A simple MRI could give us some much needed info – rule in or rule out. I trust (more or less) Dr. Woods because when her back was hurt in the fall, he took it very seriously. Couldn’t do anything at the time, but took it seriously. Apparently, legs going numb makes doctors pay attention. So, I am fairly sure that he would listen and order an MRI this time. Especially with the official diagnosis.

So, it will have to wait until next week now, but I will make an appointment and see if we can get some answers. In the meantime, I can call/email Dr. Tinkle if things get too bad.

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