Sunday, April 20, 2014

Undiagnosed Chronic ThingyThing

I like how I always write these updates at stupid hours. It's like I can't ever sleep properly or something.

I wanted to talk a bit about the physical illness I'm also experiencing at the moment. Pain often ties into mental illness and vice versa. I can't really tell how much depression is caused by the fact I'm hurting all the time now, or how much pain is caused by the depression. Both are contributing to one another to some extent, I'm sure.

It's not just pain, though. I've been having all sorts of weird symptoms for ages now, over a couple years, though the actual pain started early-mid last year sometime. I had to complain about the pain multiple times before my doctor finally did some proper investigating, because despite the pain being there it wasn't 'bad enough' to investigate. Everyone has some lower back pain/leg pain, don't you know? Especially someone who injured their back at work earlier in the year (which happened because I had pain in my right hip and leg and was favouring it when moving a heavy thing around). I got a CT Scan and x-ray of my spine, but they didn't find anything out of the ordinary. I also got some blood tests done to check various things, but the only thing off was slightly high inflammation markers. So, I got referred to a rheumatologist (who I actually saw before a couple years ago when all this started), and I've just been waiting for the appointment and popping pain pills. Yay!

So, the first weird thing was when I was working in the kitchen at IKEA. I began having really terrible joint pain in my hands, similar to arthritis. They were more stiff and painful in the mornings and would ease up throughout the day, but they hurt nearly all the time. That was why I got referred to the rheumatologist the first time, but she determined that it wasn't Rheumatoid Arthritis, because it didn't quite fit. She said it was an 'inflammation something', because my markers were up back then too, but it was being exacerbated by using my hands so much working in a kitchen. To be fair, it did ease up after I left IKEA, so I didn't think about it much.

Also, that was partially because I left IKEA due to constant dizziness that refused to go away. I had bouts off and on here and there, but by the time I left, I couldn't stay upright long enough to work at all. So, I quit (well, was pushed to, but that's another story), and my doctor at the time sent me off to see a neurologist at the Dizzy Clinic they run at the RPA Hospital. They did tons of tests on me, including testing my hearing and checking for common causes of vertigo, spinning me round in a chair, and putting water in my ears to cause dizziness! It was super not fun. In the end, they didn't find anything, though thought the dizziness might be caused by my anxiety. They did send me for an MRI to make sure there wasn't anything else that could be the cause, but the dizziness eased up by the time I needed to get results, and I sort of slacked on going back due to life and (more honestly) anxiety about dealing with it more. I kinda wish I did now, though.

I still get bouts of dizziness off and on, but nothing as bad as when I quit IKEA. Another really couple of really weird symptoms started about the same time as the joint pain and dizziness, but they were so minor comparatively, I never really brought them up or mentioned it much. They have been ongoing since then, however, nearly constantly. One is that I can sometimes be super, extra sensitive to noises. Not all the time (or I might go mad), but it's worse on days I feel worse or when I'm very tired. The only way I can really describe it is that even the tiniest noises can startle me, such as when the husband would set his drink down on his desk and the room was otherwise completely silent. The noise would seem extremely loud and I'd have a knee jerk startle reaction. I've been told it's just stress or whatever, but it feels too extreme to me to be a simple stress reaction.

The other thing that I get a lot, though again it's worse the worse I feel or if I'm more tired, is a vibration sensation that moves down my back. I was having trouble describing it until one day my cat sat on my shoulders purring at me. It was exactly the same, pretty much. So imagine a purring cat on you, only there's no cat and it feels like waves of vibration from the purring moving in a downward direction.

So yeah, probably close to this time last year, I began getting pain on my right side, around my hip and down my leg. It's focused more towards the back, and is probably tied to my sciatic nerve (the one that runs from your spine through your hip and down your leg). The pain wasn't terrible, but it was constant and annoying. I began favouring that side a lot and, as I mentioned, it led to me injuring my back. After a lot of rest and physio, I got my back healed up really well, but the pain in my hip remained. My lovely physio did note that my muscles around my right hip were super tight and that was probably constricting the nerve and causing the pain. Fair enough.

As time went on, however, the stiffness and pain continued to worsen steadily. It began affecting my ability to walk or lift anything (very inconvenient as that was a lot of my job at the time), and by the end of last year the pain was affecting my entire back, shoulders, and both legs, as well. The stiffness was so bad that I was barely able to move or bend over or stand for too long without everything spasming and tightening further and causing even more pain. My joints all over were aching badly, much like when I had the joint pain at IKEA, only it was not just my hands, but also my knees, shoulders, wrists, etc. I basically I could lay in bed a lot or hobble around the house some, but otherwise I wasn't well enough to do much of anything.

I also started experiencing really draining fatigue as my condition kept worsening. I mean, different to depression fatigue. I am more of an insomniac than an over-sleeper anyway, so it was really, really strange to feel so drained and exhausted that I'd spend days sleeping in bed because I just had no energy for anything else.

This really disabling flare up lasted quite a few months before finally easing up a couple months ago. The stiffness slowly eased up so that I can at least usually get around when I need to now, and the pain is still there all the time, but not at nearly the same level. The fatigue will still get me if I overdo it, so I have to be careful not to tire myself out too much. But overall, not nearly so bad as the end of last year when I yet again left a job due to my health. Sigh.

At the same time, I've developed some more fun new symptoms this year. One is a sensation of squeezing tightness around my chest and ribs area, as if I'm in really tight, constricting clothing or being hugged too tightly. Even more recently, I've been having a lot of muscle twitches and convulsions which are both random and constant. They sometimes jerk me awake when I'm trying to fall asleep, because I need it to be more difficult to ever get any sleep. I also sometimes get trembling in my hands, though that's a lot more infrequent. And I've been having a lot of trouble focusing my eyes at times and they can be painful off and on. Actually, now that I think about it, for the past few years, my eyesight has continued to get worse, even though you are supposed to plateau as an adult.

There's a few other symptoms I'm more embarrassed to talk about, but basically, a lot of this points to something going on with my nervous system. I have no idea what, of course, but internet research (no, I don't have cancer) has pointed to perhaps something demyelinating like MS or similar? But who knows, other things can affect your nervous system as well, but it's clear I have a chronic something that will probably be autoimmune in origin, cause why not have my terrible immune system decide to also attack me, as well.

So yeah, that's what's going on with me. I don't like complaining about it too often, if I can help it, and you likely won't even remember I'm in pain all the time, because I try to not let it stop me from living my life. But if I mention that my back hurts and you complain yours does as well, it is entirely possible I might give you a slightly dirty look. (Yeah, that happened with someone who should have known better. >.>)

This isn't a hey, look at me dealing with all this terrible shit, give me sympathy! post. A lot of people deal with health problems, and I'm certainly no stranger to them. But it is a pretty draining situation overall, on top of the already stressful life stuff I've been dealing with, and it makes it even harder to make myself do what I need to when my depression drains me of motivation, as well. I think I'm allowed to be proud that I still mostly take care of myself pretty okay? Yeah, definitely that.

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