Another flare and another study

March 6, 2018 at 12:26 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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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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  1. I hate that you’re flaring and its those awful “I have the flu and hurt all-over” nasty things. Flippers crossed the MTX kicks in. I wear my Fitbit pretty much 24/7 except when I charge it while I’m in the shower. It is interesting to track my sleep patterns against how I’m feeling otherwise. It would be great if these studies would actually give you the results THEN give you something to help! Do be kind/gentle with yourself and feel better! (We have sticky toffee pudding to eat!)

  2. We are in the same boat. I’m very achy of late. All over. Not just a couple joints. Weather has contributed as we had a big storm Fri – Sunday and then there’s another new storm starting now. When the barometer moves in any direction, it always hurts.

    My ortho said last week that hopefully the beginning of spring might help my pain. I am going to start back with my trainer in April and hope that movement will help.

    Feel better. Good luck with that sleep study. My fitbit tells me I sleep 4 – 5 hours per night

  3. Also do nto forget you have to charge it. So between the shower and charging you will only need to wear it 29 days. 🙂

    I hope this study goes well, we need good data on sleep.

  4. Thanks Carla – it’s been horrible but I think I’m out of it. Still getting pain at night but that’s RA for you – I’m pretty much fine now during the day. Apparently this thing (which isn’t a Fitbit as such, just similar) is fully waterproof and can/should be worn all the time, bath and shower included! LOL – yes, it would be good if the studies could then provide help, but at least they’re doing something that might provide people with help in the future. YAY to sticky toffee pudding!! I’m very envious … especially as I’m awaiting a fasting blood test so haven’t eaten anything for 13 hours so far and have another hour or so until the test!

  5. Sorry to hear that Leigh! It’s a horrible thing. Yes, I always thought the weather contributed with me but I was part of a study looking at pain and weather and for me personally (you could see all your own data in that one) it didn’t really correlate – at least not in an obvious way. I still think there’s a link though! 🙂 4-5 hours? Eek! I THINK I get more than that most nights – that’s a really bad night for me, and in a good one I’m lucky and get about 7 hours I think.

  6. Good point Rick – either it’s got a super-long battery in it or they haven’t thought of that as they say to wear it for 30 days (including bathing!) and haven’t sent any charger! Very true re needing good data on sleep! I’m convinced it’s WAY more important than most people give it credit for.


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