Polly Pulls It Off

March 14, 2011 at 9:34 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 9 Comments
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This perfectly innocent post title, no double entendres  intended, is supposed to set the 1950’s scene for you. Maggie (friend and frequent commenter on this blog) has always said that the town where I live is like stepping back into the 1950s, and generally I reckon this is a pretty good thing. The 1950s is a pretty nice, cosy, friendly place to live; that is until you get hit by … da da da daaaa, 1950’s Doctor Man.

Alas, the knee has continued to flare and I decided, after having a lot of stiffness and pain yesterday, that I really should go back and say a) the steroids worked but they ain’t workin’ no more and b) can you ask the physio to have a look at the knee please? So I did. Of course, as I’ve mentioned before, if you make a ‘same day appointment’ (and the choice is same day or 2.5 weeks away if you’re lucky) then you can’t choose your doctor; you just see whoever is available.

Now when I did this two weeks ago I hit the jackpot with Dr Locum Eye-Candy, but alas, this week my luck ran out and I got 1950s Doctor Man. Now don’t get me wrong, he was pleasant enough in a dried-up old stick kind of a way, and true to his 1950s roots he did listen patiently and he did actually bother to examine me properly (two things you certainly can’t count on these days in the NHS!), but then the downside of being in the 1950s kicked in, and I got the 1950s lecture about RA. I thought things had come on a lot since this kind of thing: ‘Well, that’s the nature of the disease. It’s a progressive disease I’m afraid and it will flare now and then. Now, I’m not trying to depress you but really that’s just the way it is and there’s not a lot you can do about it. You’re on a high level of methotrexate and other medication already, so … ’ And so on, and so on, for about five minutes.

I’m not actually saying he’s entirely wrong, by the way – fundamentally that’s probably true, but he didn’t make one single suggestion about sensible things I could do. OK, I wasn’t expecting him to suggest Reiki or a gluten-free diet or anything else that your average 2011 British GP would consider a bit ‘far out’, but what about, for example: exercise … or rest, apply heat … or cold, consider a steroid injection in the joint, come back if it gets worse, have physio, get hubby to do all the cooking, washing up, shopping etc. for the next few weeks. <Grin – of course he wouldn’t suggest that! Not the done thing at all in the 1950 to have a man doing all that!>

I must admit I wasn’t feeling very ‘with it’ and I damn near forgot to actually ask what I’d gone in to ask, which was since I was doing a 50 minute round trip every week for ultrasound treatment on my shoulder at the moment with the physio,  could he please ask the physio to treat the knee too? Finally I did remember, and, give him his due, he agreed immediately and not only that but he actually wrote me a note (with his very smart 1950′s fountain pen) to take in with me, hopefully circumventing the need to wait five weeks for the next official appointment for a knee referral, by which time the flare will probably be over.

I did also ask him whether I should be exercising it or resting it, and he said definitely resting it … but is this right, I wonder, or is this just more 1950s medicine. Not that long ago the only recommendation for RA was ‘bed rest’!

To physio or not to physio

March 4, 2011 at 11:04 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 3 Comments
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Well … half-an-hour’s drive, ten minutes or so waiting, thirty minute consultation … and the answer turned out to be, for the moment anyway, not to physio! Aaaaaaargh! I’ve only waited since January for this appointment. Still, there were perfectly sound reasons not to physio – and at least I had a fun time in the waiting room reading old copies of National Geographic!

There was one small thing I hadn’t accounted for … I’ve just started a (very) short course of oral steroids for a very swollen knee, and the physio that works for me, or has always worked for me in the past, is ultrasound. Obviously the steroids are busy trying to reduce the inflammation, and equally obviously that is intention of most treatments including the ultrasound. Aye, but there’s the rub … (talking or rubs I must rub some of that nice ‘Nature’s Kiss’ ointment into my knee … I keep forgetting about that … but back to the main point), the way that ultrasound works (putting it simply, which is the only way I know!) is that it apparently INCREASES the inflammation quite rapidly in order to trigger the body to go ‘ooh, that’s inflamed’ and kick into place a process for doing something about it.

So … if I had ultrasound, my physio basically thought that I might well be either inadvertently cancelling some of the steroid effects or, at very least, wasting my time because the steroids might counteract the ultrasound without it being able to do anything.

Now the physio wasn’t at all sure about this, and neither am I, but we decided it was better not to risk it so I’ve got to go back again on Tuesday morning!

The more I think about it the more I’m not convinced by this whole argument … but I’m way too tired to work out why now, so I’m off to bed and I’ll give it some thought tomorrow!

Coffee on the knee

March 3, 2011 at 9:59 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | Leave a comment
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We’re a nervy (or at least reticent) bunch when it comes to telling friends and colleagues about our RA, and often for very good reason! There’s probably a post born every minute about this. Two good recent ones are from Squirrel and Laurie at ‘Frozen Woman’. I suppose it’s partly that we’ve all had bad reactions from someone, somewhere at some point, and it’s once bitten, twice shy, but also, as Squirrel mentioned in her post, that it’s really hard to get people to understand that you can be fine one minute and flaring the next … and then fine again soon after, if you’re lucky.

What one doesn’t often hear is what a good laugh it can be trying to explain things to folks wot don’t know.

Well today I had to explain to the ‘temp boss’ (‘the boss’, who knows all about the whole RA thing, being on maternity leave) that she was on permanent coffee duty today because I couldn’t get up and down the stairs terribly easily. Now I was probably muttering a bit because this whole RA thing shouldn’t make me feel embarrassed, but it does, and I was feeling guilty (another dumb and pointless emotion that shouldn’t be related to being ill!) about not being able to get my share of coffees, and temp boss’s hearing isn’t as acute as it might be, and she was probably only half listening because her mind was on getting coffees, but anyway, somehow my saying, ‘I won’t be able to get the coffees today because I’ve got a bad knee’ followed by an attempted explanation of flaring etc. got translated in her mind as ‘I can’t drink coffee today because I’ve got a bad knee’ and the pair of us ended up in fits of giggles at her vision of all this coffee pooling somehow in my knee and causing it to swell up.

Well, laughter is definitely therapeutic, so for once telling a colleague about RA turned out to be more therapeutic than painful! I think the pair of us will be referring to any future knee flares as ‘coffee on the knee’ from now on!

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!

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!

Migraines again!

January 18, 2011 at 3:03 pm | Posted in Me, rheumatoid arthritis (RA) | 8 Comments
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Hmm, not feeling quite so fine any more! I had to finish work early yesterday because I woke up with a headache and it just got worse and worse until I finally realised it was a migraine. My migraines usually start with handy visual effects that flag up, ‘Hello! I’m a migraine’ straight away, but of course I was probably asleep at the point where those were happening, so I missed that.) Although it was one sided, it wasn’t that bad when I woke up so I just took paracetamol. It just niggled away all morning, and eventually I thought ‘migraine?’ and took a migraine tablet. by then I suppose it was waaaaaaaaaay too late.

At about three o’clock it was getting really bad – feeling sick, couldn’t see properly out of my right eye, bad pain … definitely time to give up and go home. Fortunately hubby had the day off and was there to get me tucked up in bed with an ice pack, a darkened room and middle-sized cat (who purred so loudly at the unexpected pleasure of an afternoon snuggle that I was very glad my migraines aren’t affected much by noise – only light!)

I felt slightly better by about six and was able to eat some dinner, which made me feel better still, but still completely washed out. I didn’t do anything all evening except watch a bit of telly once the headache had gone.

Still, at least woke up this morning headache free. Just one small problem … they’re painting at work! Aaaaargh – the smell of paint is bringing the headache right back again! Not sure how long I’m going to last this time.

Interestingly I’ve got pains in my right shoulder for the first time in a while, coinciding with a migraine over my right eye. I’m fairly convinced they’re related … but the doctors aren’t!

If there’s anybody out there that gets migraines that they think are related to their RA Pain, I’d love to hear from you!

A morning of minor frustrations

January 12, 2011 at 9:47 am | Posted in Me | Leave a comment
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Is it too late to make another New Year’s Resolution? So far the first and only two aren’t going so well … eat less, exercise more. I’ve managed one exercise ‘session’ and then come down with a very painful period … which is usually an excuse to eat more, exercise less!

Anyway, the new one is to try not to let a day full of minor frustrations build up into one major bad mood!! This morning will be testing. It’s not nine o’clock yet and so far:

  • I woke up at 5:50 am with a very painful back (period) and hip (who knows, maybe RA?), to hear the pitterpatter of not so gentle rain on the roof. Oh goody, another wet and painful day!
  • I checked my emails to find I’d managed to slightly upset a client. (Long story I’m not going to go into here, but let’s just say I’d anticipated that, and of course it’s his fault, but still not nice to have it confirmed.)
  • I went into the kitchen to make my lunch and found that Middle Sized Cat had spilt his water all over the floor. Needless to say, I found out by stepping in it.
  • I chopped up a variety of bits and bobs for my salad, and then threw them on to the floor and into Middle Sized Cat’s refilled water bowl!
  • I was running a bit late coming into work and then had a minor run-in with an idiot driver who thought that he had the right to pull out round a stationery bus into my side of the road because he drove a BMW and I only drive a Corsa. Wrong! Genevieve (my car) and I don’t like to be bullied, so we carried on. He wasn’t actually drawn up with the bus yet and had heaps of room to pull over on his side, but he sat there for a minute, pulled right out onto my side of the road and glowering because he thought I should have waited for him. HA! Anyway, we won that one at least, but it didn’t make me feel any better – just cross about more things!

So here I am, sitting at my desk, telling myself that none of these things are exactly a major crisis – especially as both hip and back ache have now gone – and that I should pull myself together and plan for a GOOD DAY.

Erm … so far it’s not working. Part of me is going, ‘Come on Penguin, positive thinking and all that … smile and the world smiles with you and all that jazz.’ The other part’s going, ‘Oh shut up you stupid old bat. I’m entitled to the odd bad mood if I want one!’ Have to wait and see which part wins!

Actually, seeing them all written down on the page helps rather to see just how trivial each individual incident is; the trick is just not to let the frustration build up. I feel better already!

Spare legs anyone?

January 9, 2011 at 2:44 pm | Posted in Me, rheumatoid arthritis (RA) | 2 Comments

HAPPY NEW YEAR everyone! One of my new year’s resolutions is to get back to posting, now that my City & Guilds embroidery qualification is out of the way – or at least I hope it is. The last assessment piece went off to be assessed a bit before Christmas.

It’s been an up and down few months – mostly up, and very up from an R.A. point of view, but down due to all sorts of hassles with central heating incurring large bills and the need for new pipework, a new tank and a new office floor. All that, plus rows with the flooring people, rows with British Gas, minor irritations with the plumbers is now … done and dusted. (I’m hoping that’s not famous last words!)

So with the new floor down, the new pipes in, the City & Guilds qualification completed, this should be a year of new beginnings … or at least picking up the old threads that got dropped along the way, including my blog.

One other thing that got somewhat dropped, not helped by the horrible weather we’ve had lately, is my photography, so yesterday I decided to go and spend my Christmas money (it’s great still getting Christmas money from relatives at 42 – I know people whose relatives told them they were too old for Christmas presents now at 11!) I bought a brand new, shiny tripod (had to go for a light-weight version as, thanks to the good ol’ R.A., even though it’s not particularly worrisome at the moment). I’d put together a certain amount of money for a tripod and found that if I was going for light weight I either had to double that money or go for a ‘compact’ at considerably less money. Although the compact isn’t quite as sturdy, that’s what I opted for. So, with the money ‘saved’ and a handy second-hand lens available in the camera shop that was just what I wanted, I got a lens too! Then hubby and I had lunch out and hammered out some work-related stuff I wanted to discuss, and finally we’ve ordered a new DVD/hard drive. Nothing like a good bit of retail therapy to make it a cheering new year.

So … on to today. I decided it was too darned cold to test out my new gear outside so decided to go round to mum’s to test it out on her splendid Christmas Cacti. Never got quite that far – I broke the tripod!!! That’s where the spare legs come in … alas, I can’t offer any spare legs to anyone although I’m sure there are a few people reading this who could do with them, as could I, but I fear that’s what my new tripod is going to be. The legs are fine but I have irrevocably broken the head and it’s ENTIRELY MY FAULT, which makes it ten times worse, not only because I’ve clearly invalidated any guarantee but because I feel such a fool!! I shall contact the manufacturer on Monday and see if they can supply a new head for less than the cost of the whole tripod, in which case fine; otherwise I shall have to get a new tripod and then, looking on the rather limited bright side, I shall have a set of spare tripod legs if I ever need them!

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