Tags: aches, arthritis, computers, computres, exercises, flare, joint pain, neck pain, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stiffness, stress
I’ve got two different rather odd pains to add to the usual mix at the moment! One is a burning pain that I get intermittently in my spine, a few vertebra down from my neck. It’s not too bad, just a bit odd, a bit burny and a bit tingly. Bizarrely, my physio thinks this is a sign of a bit of stiffness. Does anyone else get stiffness manifesting as burning?! Well, she’s given some exercises for flexing the upper thorax, and if they work then I guess she’s right.
The other one is that, having found ultrasound fantastically helpful for ages now, I’m suddenly finding it incredibly painful on my acromioclavicular joint. (Excuse my showing off my knowledge of joint names – it took ages for my physio to teach me this one and I rarely get the chance to use it … it’s the little insignificant (until it hurts) joint between the shoulder and color bone, right at the front.) It starts off alright and then it very quickly gets incredibly sore and painful. Physio says she’s come across this happening before but she doesn’t know why, and she wonders if it’s just a bit more inflamed than usual.
I hope it’s NOT more inflamed than usual. Did I speak to soon about averting a flare? Today certainly didn’t help on the stress reduction front – all clients want their work now (if not last week), and one thought I could proofread 90,000 words in two weeks. Well, I could if I had nothing else to do … grrrr… Oddly enough I feel more stressed now with both computers working than I did yesterday with both computers not working. Does this say something about computers, I wonder?
Tags: arthritis, consultant, DMARD, doctor, hydroxychloroquine, joint pain, methotrexate, MTX, National Institute for Clinical Excellence, NHS, NICE, NRAS, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I got my shiny new NRAS magazine through the post today. Great to see an article by Rheumatoid Arthritis Guy in there! Well done RA Guy! But there’s always something in there to get me aeriated, and the first magazine of 2010 was no exception!
Interesting also to see a two-page spread on the ‘European Fit for Work Report’. Frankly, I’m not sure there were that many surprises in there, although I was a bit surprised at the number of people who become ‘work disabled’. Apparently 40% leave work altogether within 5 years of diagnosis, which is not happy reading. However, it appears that the main reason for this is people being diagnosed and treated too late or incorrectly. The report recommended ‘new and more inclusive methods to evaluate the cost-effectiveness of treating musculo-skeletal diseases in particular; one that considers more than the up-front costs of medical expenditure and incorporates wider social and economic factors.’ No kidding. In other words, this report recommends doing exactly what NICE doesn’t do. The article goes on to say that ‘NICE in the UK has already begun such a deliberation, although no decision has been reached to date.’ No surprise there then!
Now, my honorable friends, please turn to page 12 of your NRAS magazine. Don’t have one? Not to worry – here’s the headline: ‘People on Enbrel stay in work longer’. It goes on to state that a 500-person study (the COMET study if anyone’s inclined to look it up) showed that those with active early RA were three times less likely to stop working if treated with MTX and Enbrel, rather than MTX alone. Absenteeism was also reduced by almost 50% for those on the combination therapy. But here’s the rub – NICE won’t allow anyone to start on a combination therapy like this until they have been proved unresponsive to at least two other DMARDS including methotrexate … so when does early stop being early? It takes, I would think from my own experience, at least six months to show that a DMARD is not working for you, because it can take them that long to start working. So you’re diagnosed (probably not immediately), you’re given a DMARD if you’re lucky, perhaps hydroxychloroquine, for six months; it doesn’t work. You try MTX (either on its own or in combination with HCQ) for another six months. That doesn’t work either. You’ve now been diagnosed for at least a year. Is this still early enough to count for this study? Perhaps it is. If so, fair enough. If not then are NICE ruining people’s chances of staying healthy yet again. I don’t know the answer – I just pose the question.
And finally to a little article by a brave lady called Jean Burke, who works with NICE to provide a patient viewpoint in their deliberations. Rather her than me but I am full of admiration. Apparently she was asked by a member of an appraisal committee ‘Surely a twenty percent increase in quality of life isn’t worth bothering about?’ Well, I suppose that’s why they need the patient viewpoint. If you’re reading this blog as someone with RA I imagine you’ll see it her way immediately; I know I did. She points out that if the extra 20% means she can make a cup of tea in the morning, go to work or walk to the shops then yes, it’s worth it!
So long as NICE remains in its ivory tower, untouched by all these deliberations about the socioeconomic effects of diseases and so on, I simply cannot see how the system can ever work effectively.
Tags: arthritis, broke, cats, fatigue, joint pain, methotrexate, Middle-sized cat, money, MTX, NASTY, National Institute for Clinical Excellence, NHS, NICE, occupational therapist, OT, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stress
Firstly a ‘big shout out’ to Warm Socks for reading comment replies. Well done to you, m’dear! I also read them when I remember to tick the little box, but I usually don’t remember.
Secondly, for them as don’t keep up with comment replies, like me, tinglywinglypingly is a thing of the past – hurrah.
Thirdly, I had my methotrexate last night and, unlike last week, not only kept it down but slept like a log afterwards and feel great today. Middle-sized cat is also delighted, as he tends to sleep next to/on top of me, so he also got a good night. After a trip to the V-E-T yesterday he’s now costing me about SIXTY POUNDS A MONTH in medication … but of course he’s worth every penny, and more.
Hey ho – it’s only money … not as important as health.
I obviously value him more than NICE values me, or rather values other R.A. patients who are not so lucky as I am currently! This article in The Guardian tells an all too familiar story.
Tocilizumab (another biologic), which costs £9,000 per patient per year (so about the same per month as middle-sized cat costs me per year … but then consider the difference in resources between lil’ ol’ me and the British government … on second thoughts, maybe not; I’m not quite broke yet), is being given to patients in Scotland (and indeed most of the rest of Europe), but NASTY has decided once again that it’s too expensive for patients in England. And once again the fact that it could keep people in work and reduce the costs of unemployment benefit, keep them walking and reduce the cost of wheelchairs, keep them out of hospital and reduce the costs of round-the-clock healthcare … etc. etc. etc. has escaped them. It’s an argument I’ve had with them a few times before on this blog, here and here and
Tags: aches, arthritis, fatigue, flare, joint pain, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness
I was getting to the point yesterday afternoon where I was fairly convinced I was having at least a fizzle … some reasonably significant pain in the afternoon, tiredness too, and by the time I went to bed I couldn’t find a comfortable position because however I lay something hurt.
I’d had a busy, fun evening and a very unhealthy dinner! Yesterday was the night of our local sewing/quilting/crafting/whatever group and as a friend of mine who works locally but lives some way away also goes along, I asked if she wanted to come back to ours for a quick bite to eat before we went. I warned her it would only be pizza because we were in a hurry … so not a healthy start there … and she kindly contributed a chocolate putting with chocolate sauce AND cream for afters! Oh dear … but yum.
Anyway, here’s the thing … I feel much better today! So perhaps pizza and chocolate pudding is my ideal RA diet?
Erm no … before i got lots of angry comments, I’m not entirely serious! But it does show how careful you have to be not to attribute RA (or lack of it) to things without doing some serious research and testing!
Tags: aches, arthritis, car, fatigue, fibromyalgia, health, joint pain, one injection cure for RA, pain, RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stress
I was just revisiting my first ever post, about reasons to be cheerful, and I was pleased to see that most of them still stand (the last one doesn’t and one other … if you read it, and if you’ve read some of my other posts, I’m sure you won’t have trouble guessing which one no longer stands! But the point is there’s obviously a lot to still be cheerful about!
While I was at it I thought I’d revisit the nearest post last year to today’s date, and guess what? The car broke down then too! Now that time it cost me an absolute fortune, so another reason to be cheerful is that it’s really not so bad this time. (Although to be honest the car really has got to the point where I should be thinking about replacing her.)
And a final reason to be cheerful is that I’m SO much better, health-wise, than I was this time last year! I was having a terrible time with the RA then – giant puffball knees, every joint aching (or at least it seemed that way) and probably as yet undiagnosed fibromyalgia on top of that! This year it seems that maybe they’ve finally got the medication dosage right (for now anyway) and I’m really doing very well indeed. If that’s not a reason to be cheerful then I don’t know what is! Here’s hoping it lasts – and wishing all my virtual and actual RA friends a similar and long-lasting outcome!
Now if only we could hear a bit more about that ‘one injection cure for RA’ that was being so hyped this time last year …
Tags: arthritis, doctors, flare-up, joint pain, neck pain, physio, physiotherapy, positive mental attitude, RA, Rheumatoid arthritis, stress
So, are my flare-ups related to stress, or not? I thought they were but I hope they aren’t, because if they are I’m in for a big one any time now!
Yesterday I had my first ever row (maybe too strong a word, but very strong disagreement) with a client, on the phone. I was, to say the least, short with them. I was convinced I was standing firmly on the moral high ground as they’d made a bit of a mess of things, and I told them so… only to realise mid-conversation that I’d also made a mistake. While theirs was more serious, it caused an earthquake in my moral high-ground leading to rather a landslide.
It took the rest of the day to try to repair some of that, and to TRY to stop constantly worrying about it, while also trying to get on with some work.
It was all put into perspective somewhat when I got home to find that one of my friends had lost his job, another’s cat had died and a third’s husband had had a stroke!
All in all not one of my best days. I ended it by telling myself firmly that tomorrow WOULD be a better day, and it has been. (Not that that would have been hard!)
As for the RA, I had practically no problems yesterday and although I was pretty stiff on getting up this morning, it didn’t last too long. My neck and shoulders are stiffening up again now, and slightly achy, but that may just be because it’s been over two weeks since I had physio, as my physio isn’t well and had to cancel the last appointment. Employing positive mental attitude to assume that’s what it is, and not the start of a stress-related flare!
Tags: fibromyalgia, industrial revolution, joint pain, muscle pain, pain, RA, Rheumatoid arthritis
I was doing some transcription the other day and a ‘health professional’ made a comment that some patients ‘do like to cling to their little labels’. She was referring to people who say ‘Oh, I’ve got x, so I can’t do y’ without either making the effort or looking for ways around the problem, but it got me to thinking what a relief my ‘little label’ was! Having had months of unexplained pain, a maybe or maybe not blood test result, and no firm conclusions (which is typical of RA because it’s very hard to diagnose with any certainty) I was developing a fear of some doctor turning round and saying, ‘Frankly my dear, it’s all in your head’; not because I thought it was, but because I knew damn well it wasn’t! I was also worried that friends and family would be thinking much the same thing. Now I’ve got my ‘little label’ if I feel so inclined I can turn round to a friend or a colleague or, as today, the vet, and say ‘Sorry I can’t do x, ‘cause I’ve got RA’ and be reasonably certain of a sympathetic reaction … in the latter case a nurse to carry a very heavy cat back to my car for me! ‘Sorry I can’t do x, ‘cause I get this funny unexplained pain in my arm’ is likely to get nothing more than a stony look that says ‘what a bloody hypochondriac’.
Not everyone feels the same. At a local Rheumatoid Arthritis Society meeting recently and was chatting to a very nice lady there who mentioned that she was on a particular treatment for painful muscles, as well as her RA problems. ‘Oh,’ says I, recognising the name of the treatment because a friend of mine has the same stuff for the same condition, ‘is it fibromyalgia?’ ‘Well yes,’ she said, ‘but I don’t like to use that word because then it labels you, doesn’t it?’ I can see her point. Fibromyalgia is the baby of these aches and pains illnesses – a relatively new term, only ‘invented’ in 1976, plenty of doctors still believe ‘it’s all in your head, dear.’ Just because the term wasn’t coined until 1976 doesn’t mean that the illness didn’t exist before then of course. In fact it was probably part of what was known as ‘rheumatism’ as distinct from ‘rheumatoid arthritis’. Or maybe it is a new condition (although the evidence doesn’t seem to point that way). One of the fascinating facts I learnt at the meeting was that apparently rheumatoid arthritis didn’t exist prior to about two hundred years ago.