Recently, I’ve been pretty quiet on this blog. That’s mostly because, to be honest, I’ve been very busy with my own life and also relatively pain-free. Little things have reminded me that I have something going on (a hour riding on a horse, for instance, which was about the physical equivalent to being stretched on the rack), but I’ve been managing.

Until recently. The stress of my everyday life has increased a great deal, but the activity level I enjoyed over the summer has decreased. The weather has turned. And just generally, everything hurts more.

My fingers tingle all the time. The pain sometimes radiates up through my wrists. The other morning, I woke up to this:

The pain on the left wrist, with the bracelet and those magnificent veins, was severe and there was a bit of swelling. The other side? Just fine, thanks very much. What did I do to cause this? I have no idea. It went away in a day. I get finger pains that come from nowhere and then disappear.

My feet are agonizing. Socks hurt. My toes feel like someone is shoving knives into the joints.

My back hurts. My neck hurts. Sometimes the pain in my hands radiates up to my elbows and shoulders. Sometimes my hips ache. My sciatica is outstanding!

Overall, I’m in what I call a “pain jag.” Things just hurt. I have headaches and body aches and I’m crabby as hell.

Add into all of this the idea that maybe it’s all not caused by BJHS at all. Maybe the hypermobility is just making something else, something more sinister, worse.

Enter Chiari, or hypoplastic posterior fossa.

My specialist has an interest in this strange disorder and in a doctor in North Carolina who treats it. Operations to correct Chiari in adults (don’t worry, I’m getting to the explanation) have helped patients with Chronic Fatigue and with Fibromyalgia, which he treats. He suspected I might be suffering from this disorder, and asked if he could send my MRIs over to North Carolina so the specialist there could take a look. I consented, and off they went. The results were inconclusive (more tests were indicated), but the specialist thought there was a pretty good chance I had the problem.

Great.

So what is Chiari? Basically, it means that the skull is too small at the base and presses on the spinal cord. This compression, depending on what gets compressed, can cause pretty much all the symptoms (pain-wise) that I experience. It wouldn’t explain everything, but it would explain the pain. And there is a surgical “cure” for Chiari, involving, from what I understand, a bit of shaving off of the skull to allow the brain stem and spinal column more room. This relieves the pressure and the symptoms.

In his exam of my MRIs, the specialist in North Carolina found evidence of compression of one of my veins, right at the base of my skull. Two-thirds compression, in fact, which isn’t encouraging. My neck is also clearly hypermobile, which is probably not helping anything. But to know for sure, I would have to head out to North Carolina.

As I do not have the funds to do this right now, I can’t see that happening anytime soon. Which is frustrating in and of itself, because even if I declined what is pretty scary surgery, it would be nice to know what’s up with my brain, you know?

For now, I live in relative ignorance, and more pain.