My personal sleep study results

July 3, 2018 at 11:25 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
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So … how long have I been saying, ‘I really must post about that sleep study I took part in?’ Well, for over a month, since I got my results back from Katie, who’s running the ‘QUASAR’ study at the Arthritis Research UK Centre for Epidemiology in Manchester. Oops – bad Penguin!

Why QUASAR? A slightly convoluted acronym for ‘Quality of Life and Sleep in Rheumatoid Arthritis’. (Also a large celestial body, characters in the Marvel comic universe and another study, in cancer – but those are not relevant here!)

I’ve talked about the study in a few places before, here,  and here  and in passing here  … the latter just proving how woefully slow I am at getting around to blogging. But now I’m finally going to talk about the initial, personal results that Katie has sent me.

First of all, here is a week’s worth of data showing correlation (or lack of it) between amount of sleep and symptoms.

As you can see, in my case it doesn’t show much! It looks like a had a lovey night’s sleep every night of between 7 and 8 hours, which most people with RA would probably kill for, and only a slight slump on day 6 where I had a bit less. It is interesting that the pain score went up after the bad night’s sleep, but was that a relatively bad night’s sleep causing pain the next day, or pain in the night causing a relatively bad night’s sleep. I couldn’t tell you. However, Katie probably could! We had to fill in a detailed sleep diary every morning which will have those details in it, so when it comes to a much deeper analysis of the data, all that is already there to be looked at and checked out.

I also have no idea what happened to my ‘average well-being’ on day 3; maybe I was just in a bad mood? But again all that info will be there in the study to be looked at.

The most important thing, however, to me, is what’s revealed in this graph:

Hubby has annotated it for me with the ‘went to bed’ and ‘arose’ and little arrows that show when I actually put my book down and went to sleep, and when I woke up in the morning. (I think although I said I woke up at 7:05, that’s probably when I GOT up rather than woke up. I normally wake up about 6:30.

So, as it says on the graph info, the little black lines show when the monitor picked up bodily movements. This needn’t have been actual wakefulness, although I have no doubt some of it was, especially the higher lines. It’s a bit subjective for me as the graph is rather small and I’m just eyeballing it, but I count 24, that’s TWENTY-FOUR, read it again, TWENTY-FOUR(!) discreet sections of black lines indicating bodily movement between first going to sleep and final waking up in the morning. Some of those will have been me being fully awake – others just tossing and turning in my sleep, which I do a lot; but none of them restful!

So … I may have had seven hours of sleep that night, but that was during eight-and-a-half of hours of attempted sleep with many interruptions, so it was not a restful night. Thus the sleep versus symptoms graphs are really not that informative as they stand.

However, Katie, who’s very approachable, assures me that all this (periods of wakefulness, length of sleep periods, number of sleep interruptions) will certainly be taken into account in the full study. I do completely understand that  trying to get some info out to all study participants within a reasonable time of their completing the study, it’s impossible to go into this sort of depth of analysis for each individual.

I’m really looking forward to seeing the final results of the study as a whole because sleep is so incredibly important – and again, not just getting so many hours of sleep a night, but the quality of that sleep. I have never slept well in my life – Hubby can attest to this in the latter part of my life since he’s been punched and kicked by a sleeping wife any number of times! I think it’s safe to say that since the RA things have got worse in that department, although of course I have no data to prove it, but at least now I sleep better than I did for the previous few years thanks to blackout curtains and fancy lighting. More about that here.

It’s really good to see some in-depth research into sleep and RA going on because sleep is way more important than most of us give it credit for, and RA is no doubt extremely disruptive to it.

Of course, the final study results are going to be a long time coming – research with a decent number of participants, split into a number of phases, not to mention analysis, writing up etc. takes time, but whatever the results are they’re bound to be interesting so as soon as I know (well, within a month or two, you know me…) I’ll let you know!

 

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  1. RA is disruptive to sleep for certain. I hope that we will get some data shows it. Bravo for taking part in the study.


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