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.
I can’t remember when the physical therapy appointment was, exactly, that was the one where we discovered the first dislocated vertebra. You see, that first one wasn’t causing me any pain at all. Joleen released the muscles to allow the vertebra to go back into place. After the vertebra went back into place, which Joleen remarked it did with ease, I had some neural soreness… Obviously, the vertebra had been pinching off a nerve that I hadn’t felt. Weird, but I’m used to weird things like that… or so I thought.
My next appointment, I had two new vertebrae out of place. Wait, what? Weird. I’d gone to my Pilates class and I’d been careful with my movements. I hadn’t done ANYTHING that could have dislocated them. But, alas, here they were. Dislocated. These were also not really painful until they were released. Again, they went back into place relatively easily. My pelvis was also slightly off, but that isn’t unusual for me (sometimes the right half gets stuck). After this appointment, however, I was in pain. It was more intense than the soreness from before, but I figured it was due to it now being multiple vertebrae and my pelvis.
I lay down when I got home. After a few minutes, I coughed. And with that cough, there was an atrocious popping, grinding, and cracking sound (combination sound). Suddenly, I was in excruciating pain! I could only lay on the couch, completely flat, without searing pain along my spine. No, I hadn’t been in a weird position when I coughed. When I sat up later, in a supported recline, I ended up with tears in my eyes. It was very difficult to eat dinner. I didn’t realize it would be this kind of pain for the next several weeks.
Every time I went in for physical therapy, at least two of my vertebrae were dislocated. It was always the same ones too, L3 & L5 (the third and fifth lumbar vertebrae; each adult has five lumbar vertebrae, with very few exceptions, and they’re numbered from head to toes). The dislocations were rotational, both L3 & L5 had rotated such that the right half of the vertebra was further in towards the center of my body. (The below image shows what happens when a vertebra rotates properly. Now exaggerate it for the rotational dislocations, and you can see where the problems may come from.) The last few visits, my SI joints were a complete mess, and so my whole pelvis was a little off. (Off = stuck in the wrong position, but not technically dislocated.) Then, it started to get worse.
One night, I was sitting with Artio on my lap. I was sitting in a position that we’ve been in a million times, but this was different: suddenly, I was in immense pain. Instead of it being in my back, however, it felt like my pelvis was being yanked apart on the front! I had an excruciating tearing sensation on my pubic bone and on the front side of each hip joint. Obviously, I had to very quickly remove the cat. Then I lay down, stretched out flat, and crossed my ankles to try to help pull everything back in. It wasn’t working, so Dan had to put his hands on either side of my pelvis and squeeze inwards with a decent amount of force. Thankfully, that stopped the tearing sensation, though it made my SI joints feel as though they would explode.
The appointment after that, it turned out my entire pelvis and hip joints had all been trying to dislocate (as best as she could determine without imaging). Why? We have absolutely no idea. I didn’t do anything out of the ordinary, and I’d been doing more of the appropriate exercises to try to stay stable (which would not cause dislocation). It was a complete mystery, and not one I was too happy about. My hips were not seated properly, my sacrum had twisted slightly, and L5 had changed the way it had twisted (now the left half was rotated in towards the center of my body). L5 and my sacrum were actually rotated in opposite directions, which was EXTREMELY painful. It was even extremely painful to have it manipulated back into place (the rest of the work hadn’t hurt too much up to this point). This appointment was not fun. My exercises had to be cut back to EXTREMELY basic exercises to prevent accidentally re-dislocating anything.
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My back today 😥 The bruise is much larger and darker than I've ever seen it. It looks like it actually extends up onto my upper lumbar spine, which it's never done. I'm in a lot of pain, and I'm scared. I just don't even know what to do. . #JHS #JointHypermobilitySyndrome #BackProblems #SpineDislocations #BackPain #ChronicPain
At home, a day or two later, I was sitting with my feet on the floor, and I went to shift myself backwards in my seat. You know, just the little side to side type of scoot you do to move backwards a few inches? That’s all I did. There was an atrocious pop, immediately followed by a second pop, and then searing pain in my left hip joint. I believe my hip had subluxed, quite badly. It was excruciating! Dan got me an ice pack almost immediately (I can’t remember if I even asked for it or if he decided I needed it because I screamed, either way, I had ice), but it didn’t end up helping too terribly much. I couldn’t put weight on my leg very well for a few hours. Oddly enough, I’d been writing to Joleen because I had been in such bad pain for the few days that I was near the end of my rope but I didn’t know exactly what to do (I’m scared of the ER).
In hopes to avoid the ER (which was her recommendation if things got bad), I decided to take some Aleve that night… and start a short regimen of it to see if it helped. (I’ve been told to do them by doctors often enough that I know it is safe for me to do them, please don’t do this regimen without first consulting your doctor as NSAIDs -like Aleve- can be dangerous with certain medications and conditions, especially in high doses.) The next morning, after a little more than twelve hours, I took two more Aleve. The strict regimen is exactly every twelve hours take two, but I was just trying to be close enough. It helped way more than it should have to reduce the severity of my pain. It’s been helping a lot more than it should be. Aleve usually works for me, but not for major pain like this is… but the Aleve is taking the pain down significantly. This is troublesome because it points to some sort of inflammatory condition, which isn’t usually something that happens to me.
The subluxation happened Friday (11/11/16) night, and the Aleve has allowed me to continue my weekend well enough. I’m still in a fair amount of pain, but I can deal with it now. When I was sorting my pills on Sunday, I also decided to try eliminating my low-dose muscle relaxant for a few days, just in case it was making the instability worse. I’ve been on the muscle relaxant for years now, and it was at a higher dose for most of the time, so I know it isn’t to blame… but Joleen and I agreed, Monday, that cutting it out for a few days (just in case) was a good idea. If nothing else, it will at least give us more information.
Monday, I was actually feeling okay in the morning, but it deteriorated the longer I’d been awake (as per usual). Thankfully, at my 8am appointment with Joleen, everything was where it was supposed to be!!!! NO DISLOCATIONS! FINALLY! However, my pelvis is a little off due to all the tension and pain, but she doesn’t want to work on that until I’ve started to regain a little more stability (because it technically requires her to loosen up some things to get it to go back into the right place). My pelvis isn’t dislocated, but the muscle tension is holding one side of my pelvis up higher than the other and won’t let it drop back down to be even with the other half (they should be parallel to the ground when I’m standing, they’re a little slanted right now).
I’m also still popping a LOT. If I rotate at all through my spine, it pops horribly and hurts. I think L3 may have dislocated when I moved earlier, but I hope not. I’m hoping the popping is just due to all the muscular tension. We’ll see on Wednesday, at my next appointment. For now, I’m to continue the Aleve for a few more days, stay off the muscle relaxant a little longer, and do the mild exercises… and BE CAREFUL. Hopefully, this will heal on it’s own. However, since we have no idea what caused it, and my genetics appointment is so far away, and it happened so fast and escalated so quickly, Joleen wants me to get in to see an orthopedic doctor. She wants them to image the area and make sure there isn’t something bad (disease, deformation, etc) going on. I’m terrified to do so, but I know it’s necessary. I’m also supposed to try wearing an SI belt to see if that helps with my pelvis issues.
Until I can figure this out, I guess I now just have excruciating back and pelvis pain, for “no reason.” Ugh.