I’m just getting over yet another flare. I had a few days of feeling fine, and then bam, one of those horrible all-over body flares. No individual joint was so bad that I felt the need to visit the doctor or phone the helpline or beg on bended knee (impractical in my case of course) for MORE steroids, but with what felt like every joint in my body stiff and achy, it was a pretty miserable couple of weeks. (Yes, I’m well aware that ‘every joint in my body’ is hyperbole, but it gets you down and makes you feel like that’s what’s happening.’)
I have now started by higher dose (20mg) of methotrexate and taken it twice so far, second time last night. It’s pretty unlikely to have any immediate effect but I’m hoping that it will at least have an effect. We shall see …
Anyway, right now things are relatively good – pretty stiff in the mornings, with some aches and pains, and then it all fades and I’m pretty much OK for the rest of the day … until night-time, which is literally a pain!
Which brings me on to the study: I’m about to participate as a volunteer in a ‘sleep and RA’ study, which should be interesting. I had my initial recruitment chat with a very nice sounding researcher yesterday, and the whole thing starts on Monday. Unfortunately it’s using the same app that ‘Cloudy with a Chance of Pain’ used – the Umotif app, which didn’t work awfully well and had dreadful first-line support. Apparently it’s improved … we shall see! Anyway, I’m looking forward to taking part, although I wish that, like the Cloudy study, you had access to more of your own data, because I know that sleep for me is a bit of a disaster area!
For the study I have to wear a Fitbit-type device for ’24 hours’ for 30 days – I forgot to ask about what to do in the bath/shower – presumably she doesn’t meant quite THAT 24-hours! I also have to fill in the Umotif app to say how i’m feeling each morning and evening, and then the researchers look at the links between RA levels and sleep problems. I can’t wait to see the results of the study, but for my own personal data I only get to see a week’s worth of sleep data, which is a bit of a shame. I’d love to see a month’s worth. Still, happy to partake in any studies that provide research into RA and don’t drastically disrupt my life!
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