I hate it when my predictions come true!

February 24, 2011 at 7:20 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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I posted on 25 January to say that I’d finally given in and made a doctor’s appointment to get a physio referral for the presumably RA-related pains and niggles in my ‘shoulder’ (really acromoclavicular joint, but that’s such a mouthful!) and that by the time the appointment came through I’d be feeling better. Well guess what … it has and I am … mostly.

I am still getting various shoulder niggles but nothing like I was back then. Mind you the appointment isn’t until the middle of next week, so who knows, perhaps I’ll feel awful again by then! (Not that I want to. I really, really don’t want to!)

It’s quite surprising how OK I am, given that I had what I thought was a rather nasty fall on Saturday. I’d come back from a lovely afternoon out with a friend to find that hubby had been busy in my absence and washed all the carpets! (This is a pretty big job, although not as big as it could be given that our downstairs rooms are all carpet free and so is the upstairs office.) I was suitably impressed but my head was obviously full of my afternoon out and didn’t have room in it for common sense, so I went upstairs, walked all over the damp carpets, put on my very non-non-slip slippers, got the soles nicely damp and then, carrying an armload of files, went into the office, with its new laminate floor.) SPLAT! THUMP! OUCH!

Five minutes later hubby wandered up (having failed to hear the thump or the loud penguin squawking), saw me still lying on the floor (wondering whether it would be wise to move and whether we had any handy brandy), made one of those meaningless comments that one does make in such situations, like ‘Are you OK?’ when I patently wasn’t, took a step toward me and very nearly landed right on top of me!

Fortunately he managed to right himself, because that would have been such an embarrassing story to explain to the ambulance crew …

I eventually picked myself up, concluded there was nothing broken or even sprained but that I’d have a bruise the size of a planet in the morning, took a couple of paracetamol and whinged for the rest of the evening … obviously the new laminate floor in the office is springier than I’d thought because I didn’t even have a bruise the size of peanut to show for it! In fact, apart from being slightly stiff, I was fine. (And in case anyone else has the same sense of humour as my brother (which is quite unlikely) the floor is also fine!)

Actually my ‘shoulder’ has been slightly better since the fall … but I don’t think I’ll be patenting it as a new cure!

Another medical professional not to whinge about

February 16, 2011 at 10:01 pm | Posted in rheumatoid arthritis (RA) | Leave a comment

Good grief – what am I going to have to post about at this rate? After my successful doctor’s visit earlier in the week, I’ve now been for my routine monthly blood test for methotrexate and got a sensible suggestion from the nurse. Now don’t get me wrong, the nursing staff who do the blood tests are always pleasant and friendly and efficient, but I was getting a bit irritated by their attitude to general health. Conversations generally ran something like this:

‘How are you at the moment?’

‘Full of aches and pains. I’m in the middle of a flare – my fingers are really stiff, I’ve got a terrible pain in my right shoulder, my left knee keeps seizing up and my right foot is swollen to the size of a football.’

‘Right … no rashes or mouth ulcers then? Good … good … let’s do the bloods…’

At which point, being polite and reserved and terribly British, I would not say, ‘Oh for f**** sake, I thought you were supposed to be specialist rheumatology nurses. So long as I’m not having adverse reactions to the MTX you seem to think everything’s fine – well it’s b****-well not!’ Etc. etc.

It really was starting to get to me though, a while back – but until recently I’ve been fine for months so I didn’t worry. The conversation was more like:

‘How are you at the moment?’

‘Oh fine, really.’

‘Right … no rashes or mouth ulcers then? Good … good … let’s do the bloods…’

Then last month we were back to conversation one. In my opinion a good rheumy nurse would, at this point, say, ‘Gosh, but you’ve been so well over the last few months. What a shame. Perhaps you should see the GP – or have you contacted the hospital? Maybe a steroid injection might help?’ But no, it was pretty much as above (although that was rather an exaggeration of my symptoms, as anyone who reads this blog often will know. I’m fortunate – I don’t get RA that badly! (touch wood etc!))

So this week I went in and honestly I was all ready to have a conversation something like this:

‘How are you at the moment?’

‘Full of aches and pains, but no rashes or mouth ulcers, so I suppose you’re happy as that’s all you care about!’

Fortunately my British reserve (aka wimpiness) kicked in as usual, and I just said, ‘Well, not great RA-wise’ or words to that effect, and you’ll never guess what response I got! Well it was something on the lines of:

‘Gosh, but you’ve been so well over the last few months. What a shame. Perhaps you should see the GP – or have you contacted the hospital? Maybe a steroid injection might help?’

Well, you could have knocked me down with a feather – which given the weight I’ve put on around Christmas would be quite a feat! Looks like there must have been some training going on with the RA nurses in the last month! Hmm, another medical professional I shall have to stop moaning about, by the looks of it!

Doctor, doctor …

February 14, 2011 at 10:00 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 1 Comment
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I suppose I must try to be more fair to my poor beleaguered doctor. There I was complaining the other day that the doctors don’t think my ‘migraines’ are related to my ‘shoulder pain’, and things were getting worse and worse. My shoulder pain was getting to the point where I was waking up many times a night because of it, and the headaches were getting worse too, so I thought better give it another shot. So I finally got the appointment with my GP – who has referred me for physio for my shoulder, as I’d hoped she would – and I said, ‘You know – I’m convinced these migraines I keep getting are related to my shoulder pain.’ I got the usual quizzical look … and then inspiration struck. ‘The thing is,’ I added, ‘it’s not actually shoulder pain, and … erm … I don’t think they’re actually migraines!’

Well, unsurprisingly that did put a rather different complexion on the matter. What I tend to refer to as ‘shoulder pain’ is actually pain the acromoclavicular joint (try spelling that after a glass of wine) – which is the joint between the collar bone and the front part of the arm, so not really the shoulder at all. And although the headache I mentioned in that last post was definitely a classic migraine, most of the headaches I’ve had recently haven’t been. They have been one-sided, but instead of being behind the eye they very much feel like they’re outside the skull, and if I touch my scalp on the painful side it’s really tender. They’re just as painful and debilitating as migraines but without any visual disturbance or sickness. When I managed to explain all that (and I don’t know really why I hadn’t managed to do so in the past!), she thought it was highly likely that the two were in fact related. Apparently headaches like the one I just described are common with neck pain, and my acromoclavicular joint pain is probably actually closer to neck than shoulder pain.

So a mystery solved, one less medical professional to feel frustrated and irritable with, and a referral to physio. All in all a very positive outcome to a visit to the doctor!

A reliable diagnosis for Lupus on its way?

February 3, 2011 at 9:41 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 2 Comments
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You may think RA is a hard one to diagnose, and I’ve often heard complaints as to how it’s overlooked by medics and the public alike, but Lupus (or Systemic lupus erythematosus to give it its full name) is RA’s poor relation in this respect. Lupus is another autoimmune disease, but this time with the autoimmune system attacking connective tissue – and of course connective tissue occurs in all the internal organs as well as joints, so it can cause inflammation of all sorts of parts of the body, resulting in a bizarre set of symptoms that is often not diagnosed as one problem i.e. Lupus,  for many years.  I suspect that one reason is that GPs etc. would only recognise it from the famous ‘lupus butterfly rash’ that occurs on the cheeks and across the nose, but according to Wikipedia (and I don’t know where they referenced it form!) only 30-50% of Lupus sufferers ever display the rash at all.  Some research has been done now in America to show that Lupus might be caused by a malfunctioning of ‘micro RNAs’, which are things that white blood cells use to control the function of antibodies etc. This is research in mice, something that a lot of people would find uncomfortable but which I’m not going to get into a discussion about here; from a purely biological point of view, however, diseases in mice show a remarkably good correlation to diseases in humans, and the mice show a consistent pattern of ‘dis-regulated’ micro RNAs when they develop Lupus.

What that means is that, probably ten years or so down the line, if it gets that far*, there could be a simple diagnosis ‘kit’ for Lupus, where it can be clearly and easily diagnosed with a blood test or similar, whereas at the moment there is no such test – various tests can hint that it might be Lupus or some other autoimmune disorder, but then again it might not, but there’s nothing conclusive.

Like rheumatoid arthritis 1) it’s quite likely that there are a lot of people out there who are in the early stages and undiagnosed and 2) with Lupus it’s known that many people are either undiagnosed or misdiagnosed for many years before they are given a diagnosis of Lupus, so a test that is as conclusive as this sounds like it would be would certainly be very good news indeed.

We then have to hope of course that the test itself is not so expensive that no clinicians will actually pay to use it, but that’s another story, and probably one we won’t have to worry about for another ten years or so!

Happy Chinese New Year!

February 3, 2011 at 12:00 am | Posted in Me, Uncategorized | Leave a comment
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Chinese new year picture

Happy Chinese New Year everyone!

Giving myself a kick up the …

February 1, 2011 at 10:10 am | Posted in rheumatoid arthritis (RA) | 1 Comment
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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!

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