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) | 2 Comments
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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.

Continue Reading My personal sleep study results…

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Sleep and sleep study update

April 4, 2018 at 9:30 am | Posted in rheumatoid arthritis (RA) | 8 Comments

Well I’m at day 22 (I think) of the 30-day sleep study. It’s been interesting for me to monitor my sleep and I do hope I get to see a week’s worth of data from the fit-bit equivalent thingy I’m wearing, as the study coordinator mentioned this should be possible. At the moment I’m monitoring how I THINK I slept each night and also how I feel each morning and evening. What I’m intrigued to know is if I did sleep how I think I slept. Continue Reading Sleep and sleep study update…

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! Continue Reading Another flare and another study…

Research – RD Blog Week Day 4

September 27, 2018 at 4:24 pm | Posted in rheumatoid arthritis (RA) | 1 Comment

This is today’s RD Blog Week topic:

Research – Do you incorporate research into your disease management? If you do explain how and what difference it has made. If not discuss why not. Help us understand any barriers you have experienced in using research about Rheumatic Disease.

Nope, can’t say I do. When I was first diagnosed I researched everything I could get my hands on about RA, I had books, I read stuff online, I joined societies relating to RA, and what did I discover? Basically that if there is such a thing as a typical RA/RD patient … I’m not it!

I think if something changed in the way my disease affected me I would be researching frantically again trying to discover what was going on and why, but because I’m ‘lucky’ in that my RA is so mild, I work full time and have half a tonne of hobbies, of which RA is definitely not one, that I don’t have a lot of time to research something that isn’t really affecting me.

Last time I did any research was to prove a fully fledged practicing GP wrong when she told me that methotrexate was a steroid (it’s not), an anti-inflammatory (it’s not) and that the way it works in RA is completely understood (it’s not!) Fortunately she was not my GP – just someone I met socially!

What I do do, however, is participate in as much research as I can. I’m a member of all sorts of societies pertaining to pain, arthritis etc. and they periodically throw up research projects that are taking place, and whenever I’m eligible, I participate, and generally blog about it too, such as this one about a recent sleep study or this one about body image where i couldn’t post any results because the technology failed us and I never completed it! I’ve taken part in three or four studies in the last year or so, on top of the long-term ongoing epidemiology NOAR study that I’m part off, which I just had my ten-year anniversary visit with! I’m keen to participate in the hopes that the research will do some good somewhere along the line and help others, and also because knowing I’m not ‘typical’, I want that atypical type of disease presentation also represented in research so that people coming along and looking for things in future might find more that relates to them than I did, when doing their own research.

Thank you Healthline!

June 5, 2018 at 12:07 pm | Posted in rheumatoid arthritis (RA) | 7 Comments

I’m chuffed to bits to once again have been listed as one of Healthline’s RA blogs of the year, even though as ever I haven’t posted very much. I’m actually having another knee flare today (with various other painful bits but that’s the worst bit as usual) so it’s nice to have something to celebrate a little bit too! Continue Reading Thank you Healthline!…

Woohoo for Pilates… and other news!

April 22, 2017 at 5:39 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
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I have just realised I haven’t posted on this blog THIS YEAR! Shocking neglect! Part of the reason is that I haven’t been having much in the way of RA problems – things haven’t been perfect but I’ve felt generally much better since Christmas than I have for quite a while … until a couple of weeks ago, when I started to get morning stiffness (I’ve had NONE most of the year) and some pain.

Now various things could have been the (or part of the) root cause of this. We were on holiday three weeks ago (lovely time!) and that meant I had much more caffeine and much more gluten than I normally would – but I’ve been relatively good since I got back and it was only a week away. Then holiday also upset the routine and therefore the sleep, and sleeping badly always adds to the aches and pains.

However, one big thing is that I have been having weekly Pilates sessions since November (I think, maybe October, maybe early December!) and felt a lot better after the first few of those … and due to my holiday and then Easter I’ve had three weeks without a Pilates session. I suspect this has FAR more to do with the increase in pain than anything else, although of course I can’t prove it.

Anyway, I had my first session for three weeks yesterday and felt MUCH better after it … although I still had a lot of morning stiffness and pain today. Hopefully after another session or two I’ll be back on track.

In the meantime, a really excellent new NRAS magazine arrived last week – one of the many interesting articles hinted at a link between fibromyalgia and sleep (although that wasn’t what the article was actually about), and that is something I’ve been thinking for quite a while so it’s interesting to see the medics sniffing round the same idea.

Another interesting article discusses (briefly) a study carried out in San Francisco on why some people don’t respond well to anti-TNFs. Patients who have a higher proportion of an inflammatory protein called type 1 interferon beta, compared to type one interferon alpha, respond less well. Also monocytes (a type of white blood cell) behaved differently in different people. This could lead further down the interesting path of being able to personalise treatment more by understanding a patient’s personal biology, but also perhaps (my suggestion not the article’s) indicates another thing that’s been being suggested for a long time by a lot of people … that RA is not just one disease but many lumped together under the same label.

There are also various grim reminders that being overweight can cause further problems for people with RA so I need to get back on track with the diet, which has gone to pot a bit since the holiday! I did manage to mostly avoid chocolate at Easter … but then went and entered a raffle on Easter Monday with a table full of all sorts of prizes and got a call the other day to say I’d won … a chocolate bunny! Oops. Oh well, I thought, perhaps it’ll just be a little one. I picked it up today. It is labelled ‘Giant Chocolate Bunny’.  Perhaps I’ll do the sensible thing and give it away …  🙂

Oh well, at least now I have an excuse for a drink or two …

August 11, 2010 at 8:58 pm | Posted in Me, rheumatoid arthritis (RA) | 8 Comments
Bailey's Irish Cream

CHEERS!

I can’t believe it’s been over a month since I last posted – and what a month it’s been! All’s now well with ‘the boss’ thank goodness, and all’s well with the bump – two months to go before she pops, if all goes according to plan. However, work is still very stressful, and on top of that we have a big, fat leak in our central heating pipework, buried somewhere under a concrete floor, and it’s been nigh on impossible to get a plumber to even answer the phone, never mind come out and DO something. This means I’m not sleeping, because the boiler’s draining every few hours and then making ghastly sucking noises until you fill it up again. Hubby, of course, tends to snore through this so I end up fumbling around in the airing cupboard in the middle of the night, refilling the boiler – sometimes twice a night – and then lying awake worrying about it! (And I’m not going to embarrass him by discussing his attempts at plumbing … I think he’s learned his lesson now. The lesson is, ‘leave the plumbing to plumbers!’)

Anyway, on the bright sides (there are a few of them), I had a really nice weekend away for Mrs. Mooseface’s hen afternoon (it was a hen day and night but I whimped out and only did the afternoon!), I remain fairly healthy AND apparently if I want to keep healthy I need to consume more alcohol – COOL!

I posted a while back on a study that suggested that people who drank alcohol were less likely to contract RA than those who didn’t … or at least I thought I did, but now I can’t find the post. I remember thinking, ‘Marvelous – license to drink, but it’s a bit bloody late for me. I’ve got it already! Ain’t it typical that you try to be health-conscious and be terribly careful NOT to drink too much, and then find it might have been a good idea to have partied away the last twenty years… oh well.’ Well now, just in the nick of time, I’ve been given back that licence to drink! According to a study by Sheffield University, alcohol may not only reduce the risk of developing RA, but might also reduce the symptoms.

This surprisingly balanced article points out the thing that newspaper articles rarely bother with when they report on these studies  – that of course just because there is a statistical correlation between alcohol and RA (or lack of it), it may not be the alcohol consumption itself that reduces symptoms or stops RA developing; there could be a common factor in those inclined to drink more that also makes them less at risk of severe RA.

But you know what? After the month or so I’ve had, I’m going to ignore the sensible and balanced caution, and just go and pour myself a stiff brandy! (or perhaps a not so stiff Bailey’s)

I’m not having a good morning

August 28, 2009 at 6:29 am | Posted in rheumatoid arthritis (RA) | Leave a comment
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Woke up at 5.30 and my iPod (normally life, or at least sanity … or at least remains of sanity saving at this time of day) was out of charge … because I fell asleep with it on last night!

So I crept out of bed so as not to wake hubby up, thinking I might sneak an early coffee and breakfast as he’s on a fasting blood test (more of which later if I get round to it) and can’t have anything until the nurse has been round at half-past-seven.* Of course I instantly woke him up and now he’s up too … so much for that plan.

So I thought I’d charge my iPod and I put my PC on … only to find a small spider running in and out of the keyboard. Fortunately I’m not arachnophobic … unfortunately I’m a big softy and don’t want to squash the damn thing … and arachnaphobic or not, frankly I don’t fancy the idea of it running up my fingers and down my arms … eeeeeeeeeeeooooooo.

Oh yes, and the reason I can’t sleep is that work is really stressful right now …

So this thing about getting enough sleep and avoiding stress … I think I’m having some problems with it right now. Now where did I put those coping strategies … probably somewhere under that enormous pile of work …

* Before you faint at the idea of a nurse coming round at 7.30 (especially Frankie) she’s not NHS – she’s part of a research study … obviously a well funded one! More on that later though.

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