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.
xoxo,
Annie
I don’t think those symptoms are all that weird. Whether they can be helped is another thing. :-/ The yawning thing with spinal problems makes sense, I just wish I knew how it could be alleviated. I sometimes have yawning spells too, but I haven’t been able to connect them with anything (symptoms, causes, worsening or anything). My husband is embarrassed by them.
I don’t know if you’re familiar with Kleine-Levin syndrome, but it’s a kind of cyclical narcolepsy that features disorientation and confusion. Often excessive eating and hypersexuality too, but I don’t think they’re required. I wonder if yours could be that or something similar?
Annie,
I have a lot of lower back pain as well that I never made much sense of until recently. My chiropractor finally explained to me that it comes from the way that I sit and sleep when I’m really stressed. I haven’t found anything that helps it except muscle relaxant and chiropractic visits (and sometimes lying flat on the floor.) The chiropractic treatments only give temporary relief but it’s way better than nothing.
What I usually tell people is that my body is REALLY confused. It keeps trying to send up warning signals, but the problem isn’t being fixed, so out of frustration, my body has become more and more desperate. Think of it like this: there’s no paper towels in the third floor bathroom. You try asking the janitor. You try putting notes up on the walls. You send emails to everyone you can think of. Now you’ve degenerated to banging on the walls. Throwing all the trash on the floor. Only wearing black clothes when you’re in the building. Nothing gets more paper towels in the third floor bathroom. So far, they’ve taken down your notes. They’ve painted the bathroom a different color. They’ve put twice as many trashcans throughout the building. They’ve even given you flowers to brighten your day (since you keep wearing black). Now you’re about to pull the fire alarm…. which will likely bring the fire department, but probably also bring the police, a detective, a plumber, an electrician, and whoever else they think might potentially be relevant… See where this is going? Not to the store to get more paper towels or even cloth towels or hand sanitizer.
Totally love the groundhog day reference.
Hoping that things get better somehow.
Abigail
Wow Abigail, that paper towel comparison is absolutely fantastic! I’ve thought about it from a similar perspective, but not one so descriptive!
The first seven or eight years of my CFS were characterized by hypersomnia. 17-23 hours of sleep was not at all unusual. I missed a lot of high school and college because of it. Anti-depressants made it worse but it was still there when I wasn’t taking anything. I actually went to a doctor who said I didn’t have CFS because hypersomnia wasn’t a CFS symptom, sleep was more or less the usual amount, but you just felt fatigued when you were awake. Back then I had more energy when I was awake, I could go shopping, drive myself, climb lots of stairs etc. The past six years I sleep a relatively better 9-11 hours a night but I am totally disabled by fatigue during the day. Dr. Cheney said he sees CFS patients with and without hypersomnia and the ones who sleep all the time usually aren’t as sick (when they’re awake) he thought all the sleeping might be a kind of protective measure the body uses.
I have pain all along my spine. Haven’t noticed a link with yawning. The lower spine is ok if I don’t touch it but hurts when it’s touched, the upper spine is just achy all the time but feels better if I get someone to put pressure on it. All around though I find heating pads to be my best friend.
Allison,
My heating pad is my best friend too, whether on my back, stomach, or anywhere else that decides it wants to be pain central. I hope they can find something to help you more! xo