My neck pain and headaches have been getting worse lately, and I noticed that they are significantly worse when I am upright for longer periods of time. I also started getting headaches that are either (or possibly both) occipital neuralgia or trigeminal neuralgia. After some research, I discovered that sometimes these symptoms can be due to craniocervical instability (CCI) which is common in people with connective tissue disorders. To see if CCI is causing any problems, they use an upright MRI.
I talked to my neurologist about it, and he agreed an upright MRI could show us something that my supine (flat on my back) MRI had not. He found a place nearby that did them, and filled out the orders for me.
Image of my upright MRI. This view is as if you were staring at my left ear (you can see my chin pointing towards the left of this image).
I hope you were all able to find some joy in this holiday season in whatever circumstances you found yourself in – I know the holidays can be very difficult for some people.
Personally, I extremely overdid it and my body crashed hard on Christmas day. Thankfully, our Christmas day is very relaxed and so I kept from overdoing it even more. Unfortunately, on the 26th, I woke up in extreme pain because I had managed to dislocate my L5 vertebra and my sacrum (again). My vertebrae dislocate rotationally, meaning they rotate like they’re supposed to, but get stuck rotated and won’t go back into place properly without manual manipulation. I was at a “chronic illness ten” meaning that I would have gone to the ER had I not known exactly what it was and instead just kept doing what little I could to keep my brain distracted. Experiencing “chronic illness ten” pain is frustrating, because unless someone knows you extremely well they have no idea how badly you are truly suffering.
At the end of my MRI Results post, I mentioned that I would be going forward with a cortisone injection in my right sacroiliac (SI) joint… then I kind of disappeared! Oops! I didn’t mean to disappear, I swear. However, part of my disappearing act was actually due directly to the injection.
I got the injection on Friday, January 27th, at 1:30pm. Yes, the timing matters.
As you probably know, I’ve been struggling with some serious back pain and problems since October. Using this pain scale, I have been at an eight since October. Sometimes I get lucky and might drop to a six, but that is extremely rare. It all started so suddenly, that my physical therapist – I’m in constant physical therapy to help keep my body functional despite my health problems – got quite concerned. She thought it would be a good idea if I went to an orthopedist.
The orthopedic appointment was a nightmare. Continue reading
Over the last several weeks, I have been dealing with the first massive complication from my joint hypermobility syndrome (JHS) that I’ve ever had… At least, that’s what we think it is as of right now. If you’ve been following me on Instagram, then you know what’s been going on. If not, let me fill you in now:
I’ve had several vertebrae in my back dislocating. Yes, several. My pelvis has also been trying to dislocate in several places, and my SI joints have been severely dysfunctional (dislocating and getting jammed). I also subluxed – partially dislocate, but it pops back into place by itself – my left hip the other day. Obviously, I’ve been in pretty severe pain for a few weeks.