Tags: app, arthritis, chronic pain, cloudy with a chance of pain, graphs, pain and rain, pain and weather, pressure, study, umotif, weather, weather and pain
Preliminary data can be a dangerous thing, but the gloriously named ‘Cloudy with a Chance of Pain’ study, which I blogged about here when I first signed up for it, has produced some very interesting preliminary results. They have participants across the country and indeed internationally, but for the initial results they were focusing on two big cities (Leeds and London) and one rather smaller one, Norwich, quite close to me. They looked at chronic pain in general (not just arthritis) and found a link between wet weather and an increase in pain – something many of us have been muttering about for years (indeed people have been muttering about it for centuries), but which has never been seriously studied before so far as I know.
The Cloudy study works by getting patients to fill in an app each day which measures wellness, pain levels, stiffness levels, time spent outside, fatigue, tiredness on waking, air pressure (based on your phone letting them know where you are so they can find out the pressure from that) and possibly some other things I forget.
I’ve had some frustrations with the study, most notably that they lost five weeks of my data, which I’m still fuming about, although they did send a nice apology, which stopped me ranting at them any more. (Yes, I had the odd rant or two … sorry guys!) As time has gone on though, the app has improved a lot. It now allows you to graph any two measurements from the list above against each other to see if there are any obvious correlations. It’s then also possible to go onto the website and look at massed data for all participants, which you can then attempt to analyse and send in your own suggestions as to what the heck’s going on. I’ve not tried that – I’ve been too busy making a living – but it does sound like fun.
Interestingly, and if you’re in the UK and reading the blog I’d be mighty surprised if you haven’t heard about this already as it’s made a huge splash (pun intended) in the media, their preliminary data does suggest a link between chronic pain and wet weather. You can read more about it here on the Cloudy blog. Now it is preliminary, but it certainly does look promising. Another six months to go until the end of the study, and then we’ll see what they find out.
So do my graphs correlate – pressure and pain? Erm … nope, not really. Funny thing is they were correlating beautifully right up until the point they lost my data (thanks guys) but after the five-week hiatus pressure and pain haven’t correlated especially well. I wonder if that’s because I’ve generally not had much pain for the last couple (until yesterday, which is partly what reminded me to write something in my blog!) I think maybe if I’m already suffering, then things get worse when it’s wet. If I’m going through an ‘under control’ period, then it doesn’t matter how wet it is, I’m fine. That’s just speculation though – I’ve not tracked it properly. Maybe in another six months I’ll have a better idea.
So keep it up, Cloudy team – you’re doing a great job … even if you (or rather umotif, whose app it is) did lose my data. (Me, hold a grudge … never …)
Tags: arthritis, Arthritis Care, Arthritis Research UK, chronic pain, cloudy with a chance of pain, RA, Rheumatoid arthritis, weather
Isn’t that a fantastic title for a study of chronic pain to see if it is/might be related to the weather? Well, if you’re in the UK and have arthritis or chronic pain and smart phone you can do more than just enjoy the great name – you can be part of the study!
All you have to do is agree to participate and download the Umotif app with the code word ‘cloudy’ – allow it to know your location and fill in the details (which really won’t take more than five minutes and probably less) each evening. I think you’re supposed to be able to set a reminder in the app, so that your phone will ping and remind you to complete the survey … as yet I haven’t worked out how tough!
To find out more about the project, funded by Arthritis Research UK, you can go to their website.
This sort of study needs lots and lots of people to really make it work, so if you’re eligible please do join in – it would be fascinating to see if any link to the weather is established. And as the article about this in Arthritis Care’s Inspire magazine points out, if nothing else the study might get a few headlines about arthritis, which ain’t that easy to do!
Even better, this really is ‘Citizen Science’ – anyone who wants to can explore the data, look for patterns and, if they find any, submit their ideas and hypotheses! Cool!
Tags: aches, anti-inflammatories, arcoxia, arthritis, doctor, flare, medicine, methotrexate, MTX, R.A., RA, reducing tablets, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, tablets, weather
You may have noticed I haven’t actually said anything much about my RA for a while … well that’s because it’s not really affecting me in a big way, and hasn’t been for a while. And yes – I do appreciate how bloomin’ lucky I am!
I saw my consultant the other day and for once we were in agreement – things are going well both from his point of view (bloods and 2-second examination) and mine (how I actually feel). These two things rarely combine but this time they did, and what’s more, six months ago when I saw the nurse things were going well too, so we’ve made the decision to cut back on the tablets.
I must say I felt awfully brave doing that … still do actually, it’s scary how dependent one gets on the comfort of knowing that if you keep taking the tablets things are mostly OK. It’s only the anti-inflammatories that I’m cutting back on at the moment, and the idea is that if that goes OK I’ll step down my methotrexate next time I see him. In fact, I’ve cut out the anti-inflammatories altogether for five days so far and things are going well. Apart from the odd twinges in my bad knee and occasional mild stiffness and achiness if I wake up after a cold night, I’ve had very little indication that they were making any difference. Unlike the methotraxate, there was no build-up with the anti-inflams I was taking, so the good news is that I can cut them out for the moment but if I have a flare, or just a bad, achy day, I can take one whenever I need to.
Of course we’ve had five days of glorious sunshine and DRYNESS – which I’m convinced makes a difference, so we’ll have to wait and see how things go when that stops – and given it’s the weekend that will probably stop tomorrow! Watch this space! I’m really hopeful though that things will carry on going well and I can reduce the methotrexate in six months’ time!
Tags: arthritis, consultant, diagnosis, doctor, GP, hospital, joint pain, R.A., RA, rheumatoid, Rheumatoid arthritis, rheumatology, stress, weather, work
I really hate the winter half of my six-monthly hospital appointments. I suppose it could be worse. I have the nurse practitioner visit (usually bad) in summer (not so bad), and the consultant or registrar visit (usually OK) in winter (not so good), so you could say it balances out. I have just had my visit to the register – a very nice young lady who, while obviously struggling with the basics of the English language, still clearly had an excellent grasp of autoimmune diseases! It took rather a long time to find any of that out though.
At the risk of sounding like one of those very bad school essays (‘What I did on my holidays: I got up at 4am. Mummy was cross and said go back to bed. I got up again at 6am. We left the house at 7am. We arrived in Wales at 11:30 am’ etc.) here’s why I hate the winter appointment. I left work at 10:15 for what should have been an approximately half-hour drive to the hospital for an appointment a bit after 11. Why leave such a long time? Because it’s December. The weather was a bit rubbish and if you have an appointment you can guarantee to get stuck behind something slow. I did. Then there’s the car parking – always fun. I struck gold in the third car-park I tried. As you can imagine, after driving round three car parks, all for several minutes, I was starting to cut it fine, but as soon as I reached the Rheumatology Department I realised I need not have worried. The waiting room was heaving! I handed in my appointment letter, took my seat and waited … and waited … and waited. The usual charmless nurselet called me in, did the ‘weigh and wee’ and then I got sent to the equally busy inner weighting room … where I waited … and waited … and waited.
After about an hour a nurse came out and wrote next to my consultant’s name on the notice board ‘running one hour late’. Twenty-five minutes or so after that, I finally got seen. Fortunately I’d taken in a good book. Unfortunately, as it wasn’t so cold as last year, and they were probably even more short-staffed, no one offered us a drink. I hadn’t had time for a drink on arrival because it was time to check in, so I was a bit parched.
Useful appointment with nice registrar followed, which culminated in a further referral (who knows where, who knows when … but no hurry, nothing urgent!) and a blood test. ‘Will you give me a form so that I can get the test at my GP?’ I asked. ‘No, no,’ she said, no doubt intending to be most helpful, ‘you have it here. Just go to the blood test department …’
So, by now thirsty and pretty peckish too, but thinking I’d better get this done before heading for a café, I went and found the blood test department. Guess what? The waiting room was heaving AGAIN. That’s another reason for hating the December appointment. People get ill in the winter!
I went up to reception and got a ticket – 73. The number just called was 63. Only ten, I thought. Surely it won’t be that long. ‘What’s the waiting time likely to be, just roughly?’ I asked the receptionist. ‘Hmm,’ she said. ‘Could be up to 45 minutes … but it might be much quicker.’ Aaaaaaaaaaaargh. 45 minutes? Aaaaaaaaaaargh! And we were so busy at work too. So I phoned the duty junior penguin at work and went ‘Aaaaaaaaaaaaaaaargh’ down the phone at her. (It’s in the job description – ‘be prepared to listen to senior penguin going aaaaaaaaaaaaaaaaargh periodically’.)
As it turned out though, the queue did go down quickly. All of a sudden they were charging through people and I was the only one left, and then my number came up, and in I went to be processed. (It did feel a bit like that this time, but given the numbers they were having to get through, I can’t really blame them!)
And so back home, stuck behind another slow lorry most of the way and then, somewhat peculiarly, a slow ambulance! I eventually got back into work at around 2.15.
Four hours out of work: total time with medical staff, approximately 15 minutes. Frustration factor: high.
Merry Christmas, Felis Navidad, Feliz Natal and Happy Chanukah to all.
Tags: aches, arthritis, cold, flare, flare-up, joint pain, knee, knee cosy, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, stress, warm, weather
Oh crumbs – it’s snowing! You may remember that in my previous post I was winging about the cold the other day; well, it’s colder.
Yesterday the journey home was worse than I ever. I had a hectic day at work but I felt fine (if a little stressed) … and then I left the office to go home.
The moment my left knee found itself outside it started to complain, and the complaints got louder as I drove, to the point where I knew I wasn’t able to concentrate a hundred percent on my driving. Not good!
Although I get the ‘traditional’ sore and achy hands and feet of RA, the worst affected thing has always been my left knee, and if I have a flare that’s usually where it starts. This is the first year I’ve really noticed the cold affecting it though.
I’ve been trying to think of a way to keep that knee warm, specifically while driving. A lap blanket (Afghan in the US I believe) wouldn’t be safe, as it might slip into the foot-well and get tangled with my driving foot. (Fortunately, considering the sate of the left knee, I drive an automatic!)
I’ve decided the solution might be a ‘knee cosy’! I’m not quite sure yet how it would work. Perhaps a combination of a sports-style knee protector and a pouch that could incorporate one of those gel reusable hand-warmer type things?
I’m disappointed, but not surprised, to discover I’m not the first person (by a long, long way) to think up the neat ‘knee cosy’ moniker, but people are using it as a name for lap blankets, not for my cunning plan. I may have to make this my Christmas craft project!
Tags: aches, arthritis, R.A., recipe, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stiffness, weather, work
No, unfortunately I have not just come back from a spa break or something. The warm, spicy sauna was my kitchen a few hours ago, and very nice it was too, having come in from work absolutely freezing.
The trouble is, if you can call it a trouble, that I only live a couple of miles from work, so I get into my freezing car at the end of the day and arrive home frozen to the core ten minutes or so later, as the car hasn’t had time to warm up. No good for me or the car really! I definitely find joints stiffen more when they’re really cold, and I generally arrive home pretty achy at this time of year. Hubby, being the good sort he is, is usually there to provide warming hugs and coffee (unless he’s working late), but today I decided I needed something really warming for supper too.
So I made Polly Penguin’s Super-easy Vaguely Moroccan-inspired Chicken and Couscous, which always goes down well. Since this involves much froiling (a combination of boiling, broiling and frying, except that really it isn’t frying as I don’t use any extra fat) and lots of lovely warm-smelling spices, by the time I’d finished the kitchen was steamy and smelling like a spice market, and I was WARM! Even warmer when I’d eaten it.
If anyone else fancies turning their kitchen into a spicy sauna, here’s how, but I warn you it’s a bit vague as recipes go because I don’t tend to measure anything, including time!
Polly Penguin’s Super-easy Vaguely Moroccan-inspired Chicken and Couscous
Serves one penguin and one hubby
1 large onion
1 chicken breast (I’m sure Quorn would work equally well)
Half a can of tinned plum tomatoes
A couple of squirts of tomato purée
6-8 green cardamom pods
1/2 teaspoon of ginger
1/4 teaspoon of cinnamon
A generous grating of fresh nutmeg
Couscous – I like to cheat with a packet that’s got bits and bobs mixed into it
Dry stir fry the chicken over a fairly high heat, adding a little boiling water as necessary to stop it sticking to the pan. Add the onion and a bit more water and turn the heat down. Lightly crush the cardamom pods, and chuck these in along with the rest of the spices. Allow the onion to soften for five mins or so adding boiling water as necessary. Then chuck in half a can of tomatoes and allow to simmer on a medium to high heat until it’s reduced (i.e. a lot of the water from the tomatoes has boiled off) . Then turn down to a low heat and prepare the couscous as per instructions on pack. This generally involves waiting five minutes. Once the couscous is prepared and you’re waiting for it to be ready, add the tomato purée to the pan and stir in, which will thicken everything up beautifully.
Serve up and enjoy – and feel lovely and warm and, if like me you hardly ever cook properly, virtuous!
The whole thing only takes about half an hour from getting the onion out of the cupboard to serving up, so you don’t have to be on your feet for ages either … and there’s plenty of time in between for a quick sit down!
(I kinda spoilt the warming effect by following this up with a toffee ice cream … oops!)
Tags: aches, arthritis, exercise, fatigue, fibromyalgia, joint pain, knee, neck pain, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stiffness, stress, tiredness, weather, work
Well more split Penguin really – my right side is ready to take on the world this morning, but my left side just wants to go back to bed with a hot-water-bottle (or perhaps Enormous Cat on hot-water-bottle duty). This is not my usual pattern – usually I have, for instance, a bad knee and a worse knee, or a pair of bad shoulders, but this morning everything on the right is fine but my left hand, elbow, shoulder and knee are all stiff and painful!
I rather suspect that this has as much to do with fibromyalgia than it does with RA, because although the knee and elbow feel joint-related the shoulder is definitely muscular … well, when I say definitely it’s actually hard to be sure I find, but it doesn’t feel like the usual rheumatoid arthritis pain. I’ve had a few problems in the last few days with it, having foolishly swung round to grab something behind me on Saturday and then found myself curled up in a ball on my chair going, ‘Ow, ooops, I really shouldn’t have done that’.* Unbelievably I then did exactly the same thing twice on Sunday! It’s such a dumb thing to do for someone who knows damn well they get problems in neck and shoulders! I blame the fact that they’d felt so good lately that I’ve been less aware of having to be careful … which I suppose is something I really can’t complain about.
Oh well, I have a mountain of work to get through today thanks to the over-enthusiasm of a colleague on Thursday who, forgetting I was on my own for the first half of the week, may have bitten off more work than we can chew, so I’m going to have to let the right side rule!
*This is the expurgated version
Tags: positive thinking, R.A., RA, reframing, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, tiredness, weather, work
I’m feeling a lot better at the moment. Exercise obviously is the cure for or ills! (Well perhaps not, but I think it might have helped a bit! Perhaps it’s browsing books that made me feel better!) Anyway, in spite of feeling better physically I woke up yesterday with a major ‘Monday morning feeling’ and a distinct grump on about the fact that we’d had too really gloomy days over the weekend and yet last Friday and this Monday (when I had to work, of course, or in Friday’s case would have been working if I hadn’t been at home with my head under a pillow trying to shift the latest migraine), we had gloriously sunny, spring days.
Then I decided this was not the positive thinking penguin I wanted to be! So I ‘reframed’ and started to think, ‘Hey, at least I can glance out of the window and see blue sky and the promise of spring, even if I do have to work.’ Then at lunchtime I managed to reframe, ‘Oh heck, we’ve gone a bit quiet at work, will we have enough to keep us going?’ to ‘Ooh, goodie, we’re a bit quiet. I’ve got time to go for a nice walk at lunch time and enjoy the sunshine.’ And I did. I only went up and down the high street, popped into a few charity shops and had a browse (got seriously tempted by a knitting machine, but that’s another story) but mostly just wandered up and down soaking up the sun (in a well wrapped kind of way, given that it’s still February!) but I felt so much better for it, and so much better for seeing the aconites starting to flower, bright yellow splashes of colour that are definitely the heralds of spring round here! (It was the primroses where I used to live, in Devon, but here it’s the snowdrops and the aconites.) Anyway, I’m feeling much better for it – and hoping that today will bring a bit more sunshine and another chance for a walk … although my fears about lack of work were groundless, as a load more has come in! Even so, I shall jolly well make time for a walk at lunch time!
Tags: aches, arthritis, heels, outfit, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), shoes, shopping, sleep, stress, tiredness, weather, wedding, work
I think that now is the time to admit defeat … talking of which my feet are admitting defeat too, but I’ll come back to that in a minute!
Ever since I was diagnosed with this dratted thing I’ve been trying to see if my RA followed some sort of pattern – diet, stress, tiredness, weather, hormones … and every time I try to keep some sort of log and think I’m getting somewhere, the pattern just falls apart after a while. I think I give up on trying to find out exactly what it is that makes my RA worse – not because I don’t think the patterns are there, but because I think they’re just too complex. I suspect that tiredness AND weather AND stress AND hormones AND diet probably all play a part – but my analytical abilities (or record-keeping abilities for that matter) just don’t stretch to trying to work it all out … especially when I’m feeling ‘carp’ anyway!
It would be really interesting to keep a log of all the different factors every day and try to analyse it – anyone up for the challenge, ’cause I’m not!
On the bright side, I have an outfit (minus shoes of course!) for the wedding of Mr and Mrs Mooseface (aka my brother and his fiancée). This is why my feet have admitted defeat – not that I’m going to give up on shoes (don’t panic Mr and Mrs M, I’m not coming barefoot although that has been suggested!) Just that my friend Debbie and I had a NINE HOUR shopping trip on Saturday (including the drive to Norwich and back, which Debbie did thank gawd!) and my feet have given up as well since then!
We had a terrific time, and a successful outfit hunt, but as my dress has black in it I thought ‘Aha, I probably have some shoes at home that’ll do the job!’ Well y’all know how much I love shoe shopping (not), so I thought that seemed like a cunning plan. Got home, tried on the outfit, showed Hubby (who liked it, thank gawd!) and tried on the shoes. These are pretty un-fancy black sort of court-shoe/pump things that I’ve had for years, with a harmless-seeming one-inch heel. I thought perhaps a shoe-bow in one of the other colours in my dress, or in silver to match the shrug I got to go with it, would smarten them up.
Well – the shoe trying on session was NOT a success. I have one thing to say about it. OOOOOOOOUUUUUUUUCH!!! Actually the heel on them was really ugly, so perhaps it’s for the best! Anyway, looks like it’s flats for me! (OK, that was more than word … I don’t care! I ache! Stop getting at me! Waaaaah!)
So … will have to have a shoe shopping day some time in the near future! Probably not this weekend as am hoping to fit in another hike with Weeny, hunting butterflies and orchids to photograph … at least the feet will be in walking boots for that so I can probably cope, if the weather improves. It’s continuous rain at the moment.
Tags: arthritis, RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), snow, stiffness, weather
Actually I’ve been rather enjoying our unusually large amount of snow … mostly! I’m sure the North North Americans and Canadians must be laughing, but we must have had all of about five inches in places – that’s LOADS for us! Apart from de-icing the car, which is always a slightly painful process that I need hubby’s help with, the snow doesn’t seem to have had any kind of bad effect on my rheumatoid arthritis, which is great! Of couse if I let myself get chilled then I stiffen up, but that’s the cold rather than the snow.
I did try to take some pretty photos when it was looking gorgeous the other day, but as I didn’t venture any further than our small back garden I didn’t get anything too spectacular! Hubby and I talked about going for a walk right through the weekend, but it never got past talking. At one stage he said, ‘I’ll go for a walk if you really want to…’ and I said that I’d been just about to say the same thing to him … so we didn’t bother! I’m sure I missed some great photo opportunities but then again the snow was a great excuse to stay in and warm and snug and cosy and got lots of City & Guilds embroidery stuff done!
However, even though I suppose a White Christmas would be kind of nice, I’m now quite ready for a thaw, thank you! Winter Wonderland is all very well, but I’d prefer safe roads and safe pavements!