Thursday, 5 January 2017

When something else happens on top of Rheumatoid Arthritis

One of the nastier characteristics of RA is the chronic pain, which can vary from person to person, depending on the level of disease activity and how many joints are involved. At this stage, my RA is sort of under control with both DMARDs and the biologic, but it's certainly not in remission, and I'm still taking significantly large doses of pain meds regularly, in order to maintain function and some kind of a life. So, it's been possible to get that to a reasonably level thing, day to day - not pain free, but with it damped down enough to get out and do something each day so I don't go completely nuts staring at the wall. That's all well and good, but it all goes to hell in a handcart when something else goes wrong. 

When I was eighteen, well before any hint of RA, my parents owned a house in a seaside suburb of the city where I went to university. It had a pool in the backyard - the first time we'd ever lived with a pool. It wasn't fancy - an above ground pool that had been set into a deck which, because the block sloped a little bit, was at the level of the patio outside the back of the house. It wasn't very deep either, but deep enough to splash around in and cool off in the stinking summers that happen there. NOT deep enough to tumble in off the edge and land headfirst on the bottom without damage. 
(Not my neck...)
It could have been worse. I could have broken my neck. I didn't, but I did all sorts of soft tissue damage that took a very long time to heal, and even then, not completely. That's the thing with soft tissue damage. Often, a cleanly broken bone (perhaps not in the neck!) is a better situation than wrecked tendons and ligaments. Set well, bones usually heal completely - not so the soft tissue. The very young physio I saw at the time was a bit awkward, as was I at eighteen. Trying to explain it, he said that my build was part of the problem - I'm tall, but very finely boned, so my vertebrae don't hold together as tightly as they might, and with the damage to the ligaments and tendons, that was exacerbated. I was - as he put it - 'loose'. It's been a good story since, but at the time it was odds on which of us was blushing the most! Ultimately, the only thing I could do was keep the muscles as strong as possible, to make up for the damage done in the accident. 

I spent time in and out of soft collars, as it would go out horribly easily and then jam. I saw so many physiotherapists, massage therapists, different doctors. Nothing really helped. And then, years later - post the RA diagnosis, but while the disease was still relatively mild - I was rear ended in traffic and had a bad whiplash injury. I spent months in a collar that time. I found a really good physio who managed to settle it, eventually, but the damage was well and truly done, and it's been an ongoing issue ever since. 

There's no predictability with it - it can be good for ages, and then I wake up one morning and I can't move. The pain is excruciating - sending daggers down my arms and through my thoracic area, and I can't turn my head. One of the early times it happened in Sydney, I got lucky. Rang work to say I couldn't come in, and called the physio practice I'd been too before for a different injury, only I got a different practitioner. And she did something no other physio had ever done. She got it sorted and mobile in record time, AND she gave me exercises I could do to prevent it jamming again. If I caught it at the niggling stage, I could do those, and settle it again. There was only one other time that I woke up with it completely jammed, and again, she fixed it, and told me to do the exercises regularly. 

I haven't been doing them. I forget... And the day before yesterday I woke up and was in trouble. It's been two days now. I'm doing the exercises hourly, and they ease it a bit each time, but I think it's jamming anyway. Which means I'll need to find another physio here... I have a referral from an acquaintance for one who sounds as if he works similarly to my miracle worker. Time to find out.

In the meantime, I have limited movement, and a lot of pain. Severe, acute pain that's nauseating - literally. If I move wrong, it's blinding and sharp and my stomach heaves. That's the thing with pain - and not many people understand it. There's not a single type of pain. There are many different types of pain, and given that I have chronic pain from the RA - and even with that, there are different types of pain - having this happen is a nasty reminder that there are yet more in the pain arsenal that can bring me undone. I could ramp my usual pain meds right up - but the reality is, it's unlikely that they'd help this situation with my neck, because I have things out of place, and nerves being crunched, so every time I move, it's going to happen - I'd only not feel it if I knocked myself out completely, which wouldn't really be a sensible thing to do! 

It WILL pass. I know that. It's just not passing very quickly, and is obviously going to require intervention. At least the calendar is going back to normal, and I have half a chance of finding the phsyio in when I call. I hope so. I can't take this neck to just anyone. I'd love a teleport so I could whizz back to Sydney quickly to see my miracle worker - and talk knitting, because that's what we do - but that's not possible. Hopefully, they can talk - she and this new guy. 


  1. i had my right hip replace din 2012. I asked the doctor the status of the left hip since RA sometimes acts on both sides of the body. He dutifully did the xray and showed me it was perfect. I was so surprised, I asked if my observation about RA was incorrect.

    No he said. The right hip has nothing to do with RA, he said in his opinion I injured it maybe 30 or more years before surgery. Wow, yes not RA at all. For heavens sakes, who knew?

    1. LOL!! Well, at least with my neck, I do know it's not RA, although the systemic inflammation certainly doesn't help when it goes...

  2. I have a repetitive strain injury in my neck that causes similar symptoms. I hate the dizziness and nausea that comes with it, and the way that everything crystallizes into a weird clarity where silence is too loud. Ultrasound on my trapezius muscles in my shoulders has been tremendously helpful. Might want to try it. Get better soon, my friend.

    1. My miracle worker physio's exercises and a bit of valium worked!! My neck still sounds like crunching a handful of wet gravel - which is pretty gross, but normal. But I have normal movement again. Note to self - keep those exercises up whether it's misbehaving or not! When it's been too bad for the exercises to work, ultrasound and bodywork has been what was required in the past - that would have meant trialling the physio I found, and we're so broke at present... I hope yours isn't giving you too much grief.