I don’t know how many of you with ME/CFS and/or Fibromyalgia have severe spinal cord pain in the lower part of their back, but I most certainly do. I don’t know if it is a result of those illnesses though, as I had an MRI result that showed a slipped disc in that part of my spine, so maybe it’s compressing on the cord? I don’t know, but it’s been going on for more than three years and I can’t seem to get any real help or answers from my doctors. The only things that keep it in check are the gabapentin and the narcotics.
Sometimes during the spinal cord pain I start yawning uncontrollably. I’m not tired – when I’m actually tired I almost NEVER yawn. Yawning means one thing in my body and that is a spiral into an illness spell. My blood pressure drops to 70/40 and I have fairly severe akathisia. This goes on for hours upon hours upon hours until I can get the pain under control, and then the yawning and movements seem to stop. It makes NO SENSE. My body makes no sense. I’m rather used to it, but it’s easily one of the most uncomfortable symptom sets that I have with my illnesses. I think it may even come in above migraines, which are pretty high on the terrible list.
I’ve also fallen back into my cycle of hypersomnia. I spend roughly two months with insomnia and then follow it with about two months of hypersomnia, and have for most of my life. It has gotten dramatically worse over the past few years, and now I can’t wake up in the mornings (I am always disoriented, do things and never have a recollection of them, and my alarm can blare for an hour before I even make sense of the noise). I usually end up sleeping at least a solid 17 hours out of my 24 daily, and it makes it incredibly hard to get a blog out, let alone do any of the activities that I want to do. I will then flip over into insomnia and function fine on about 3 hours of sleep a night. I get myself into commitments when I’m more awake and functioning, only to struggle with them when I fall back into grogginess central. My psychiatrist joked that I have Sleeping Beauty Syndrome, so I guess I need a prince to come kiss me and break the evil magical spell. Personally, I’d rather just have it be done with a wand and avoid the prince, as I don’t need a man in my life right now!
Does anyone else have any problems that sound even remotely like this, or am I in a realm of my own? I know a lot of people suffer from hypersomnia and insomnia, but does anyone else’s cycle like that? Even more importantly, does the yawning/low blood pressure/spinal cord pain mean anything to anyone? I’d love to know.
Always stranger and stranger…
I hope you are all as well as possible.