Tags: aches, flare, flare-up, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, work
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!
Tags: aches, arthritis, doctor, flare, flare-up, GP, joint pain, joint stiffness, NHS, oral steroids, pain, prednisolone, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, steroids, stiffness, stifness
I’ve read a lot on the net about oral prednisolone and generally I’ve thought, ‘Hmm, glad I don’t need any of that then …’
Me and my big mouth …
Anyway, here’s why. I woke up Tuesday morning and my left knee, which is where I had the major, major, MAJOR problems in 2008 but which has been relatively OK since, was stiff … I mean REALLY stiff, as in couldn’t straighten, couldn’t bend. Oh well … it didn’t last long. It stayed a bit stiff until about lunchtime and then wore off. It didn’t hurt at all so I decided not to worry about it. ‘One of those things,’ I said to myself, ‘one of those little unpredictable joys of R.A. No doubt that’s the last I’ll hear from that knee for a year or two.’
WRONG! Woke up yesterday morning and the knee was really stiff again, but instead of wearing of by lunchtime it didn’t wear off all day! It still didn’t hurt so I thought, ‘Oh well, maybe it’ll be OK tomorrow.’
You guessed it – this morning it was really stiff again and it hurt (just a bit, but it did hurt). It also felt as though someone had strapped a great big lead weight around it, which says ‘swollen’ to me, although it’s not actually noticeably hot or inflamed. So I gave in and took the doctor lottery – i.e. ‘same day appointment with a member of the same day team. We can’t tell you who you’ll be seeing and it may be a doctor or a nurse.’
Well it was obviously my lucky day because I saw Dr. Locum Eye-Candy, and apart from being eye-candy he also seemed pretty switched on and sensible and (mostly) listened to what I had to say. OK, so he got slightly confused and when I’d said, ‘This started on Tuesday’ that somehow got translated in his brain to, ‘This is an ongoing problem I’ve had for months’ – but hey, we got that straightened out pretty quickly, so I’ll let him off! (Also perhaps I got a little confused. He was GORGEOUS – made it hard to concentrate on why I was there … Hmm, hubby will proofread this for me later. Perhaps I should take it out … nah … )
So here I am about to experience my first ever oral prednisolone – oh lucky me !
On the bright side, I am taking minimal quantities and assuming it works I will only be on it for three days, so I don’t anticipate any problems. In fact I anticipate a miraculous cure. Let’s hope I’m right. I don’t always hate it when my predictions come true!
Also, on the really, really, really sunny side, IT’S NOT AN INJECTION INTO THE JOINT! (Or indeed an injection into the bum, which is always mildly embarrassing, and would have been ever more so if Dr. Locum Eye-Candy had been giving it to me!)
Tags: aches, arthritis, doctor, GP, joint pain, neck pain, pain, physical therapy, physio, physiotherapy, R.A., RA, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
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!
Tags: arthritis, butterfly rash, diagnosis, lupus, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, ystemic lupus erythematosus
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!
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: arthritis, disease progression, joint pain, joints, Omega-3, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Very interesting article in the New Scientist this week – thanks to Maggie for pointing it out – about Omega-3, the promises, the facts, the bits in between … It’s not only about joints, but all the things that it’s claimed Omega-3 can help with, and what proof there is, or isn’t, to substantiate them. It seems that ‘isn’t’ mostly about covers it – but when it comes to arthritis, “There is evidence that omega-3s’ anti-inflammatory properties remove morning stiffness and reduce the amount of anti-inflammatory drugs needed […] but it doesn’t stop the progression of arthritis and it does not protect the joint or prevent further deterioration. It only dampens down the pain.” Well, I don’t think anyone’s actually claimed that it does stop the progression of the disease, and hey, anything that reduces morning stiffness and dampens down the pain is a plus in my book! Guess I’ll keep swallowing those horse pills then!
Tags: arthritis, cure, injection, medical journalism, medicine, R.A., RA, remission, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
OK, so I really depressed myself with my last post – what a dumb, trivial thing to get depressed about in the scheme of things,* but that’s the way it is sometimes when you’re an overweight dumpy-frump with curled-up feet and possibly PMT!! So anyway, here’s something potentially more cheerful!
According to The Daily Telegraph this morning, there’s another ‘one-treatment cure for RA’ in the pipeline, and unlike the last one, that needed to be injected into every joint, this really is a one-off treatment that could put patients into remission for years or even a lifetime.
To say it’s early days would be a bit of an understatement, but the good news is that, like most RA drugs, it’s a drug, otelixizumab, that’s already been shown to safe in humans because has already been used ” in much stronger doses to prevent transplant patients rejecting donor organs”. If it works, we’re looking ten years down the line – they’re just about to start the first clinical trial in humans. And if it works the researchers have already said that it might potentially only help people in the early stages; “”However, the chance of this happening in patients who have had the disease for a while is not altogether absent,” says Prof John Isaacs of Newcastle Uni. Oh yes, and at the moment ‘one-off’ is not quite as it sounds – you’re looking at between two and five hours A DAY for FIVE DAYS of intravenous injection. Worse than dialysis. But the point is that unlike dialysis that’s it – you’re cooked. Off you go and hopefully no more RA damage. And also they’re hoping that if they can prove it works, they will be able to produce a different form of the drug that patients can administer themselves (and that presumably will not take ten hours minimum).
This is a nicely balanced article in my opinion – and I rarely say that about medical journalism – it’s not full of the hyperbole that the last one injection cure seemed to bring out and it doesn’t say ‘lots of old people will benefit’ as did the last arthritis article I commented on, although Kate Devlin hasn’t been brave enough to try and say what RA is (probably having seen so many medical journalists shot down when they do that!) The closest she gets is “The condition is different from osteoarthritis, the ‘wear and tear’ form of the disease that typically effects older patients.” Well it doesn’t say much, but you can’t argue with it, really. ;o)
This may not be something that will ever help me (because ten years from now I guess I won’t be considered to be in the early stages of the disease, even if it stays mild), and it probably won’t help you if your’re reading this blog, but anything that really has the potential to ‘cure’ RA (and obviously it won’t undo any joint damage that’s already taken place, but if it stops further damage – great), has got to be good news – and especially good news if you have RA and also have children!
* Not that I’m suggesting your wedding is trivial, Mrs Mooseface!
Tags: aches, arthritis, clothes, comfy shoes, feet, neck pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, shoes, stress, tiredness, wedding
I have a wedding to go to in August – I’ve mentioned this once or twice before! – but what am I going to wear when I can’t wear ‘nice’ shoes?
I get the feeling (probably erroneous) from my mum that she and other family members have been discussing how to make sure Polly doesn’t look too awful for the wedding. <Sigh> Shoe-wise I really can’t wear the ugly contraptions that are my everyday-wear, but I want something deep and wide enough to fit my orthotics, closed-toed so I don’t feel self-concious about the RA side of things and that doesn’t look like this:
I’m sure you can see why!
Thanks to my ‘interesting’ body shape it’s a sod to find trousers that fit properly so the obvious trouser-suit option probably isn’t a serious option … although I suppose I could alter it … and anyway, it’s going to be summer, so those kind of shoes are going to look wrong with ANYTHING! And I don’t want to look like this:
(With apologies to LimeGreenSquid for nicking his picture. If you object, let me know and I’ll take it down but it’s just soooo perfect!)
Since methotrexate’s magic weight-loss effect seems to have lasted a mere two weeks, I suspect I won’t be losing a few stone before then and presenting a sylph-like figure either, so all in all I’m a bit fed-up. There’s no pleasure in clothes shopping when you look and feel like this and I’ve never in my life had pleasure from shoe shopping – so while I’m really looking forward to the wedding, the preamble is worrying me slightly.
Pumps or flat Mary-Janes won’t fit the orthotics, but at least they’d be flat. Maybe that’s the way to go and a day without orthotics might not hurt toooo much. (I can see the steam coming out of hubby’s ears when he reads this, but sometimes a gal’s gotta do what a gal’s gotta do!)
Whatever I end up with it has to be flat. I don’t fancy spending the week after the wedding in self-induced vanity-related agony!
Bright ideas anyone?
Tags: aches, arthritis, flare, flare-up, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stress, tiredness
On the plus side, at least a yo-yo goes up as well as down! I’ve had another mini-flare (fizzle, floret?) since I last posted, which is why I’ve been so quiet lately … well, that and the fact that work has been insanely busy lately. I rather strongly suspect the two are connected!
I have posted before, once or twice :-) on the importance of pacing yourself and a week or so ago I gave a great demonstration of exactly how now to do that! Worked long hours, worked part of the weekend, ignored the warning signs, took paracetamol or rubbed in magic herbal rub stuff and just kept on working … and of course woke up one morning almost unable to get out of bed. I did get out of bed … still had deadlines to meet, but came home early in a LOT of pain.
So, what would a sensible person do at this point? Take some painkillers, go to bed and have a bit of a snooze probably. I thought, ‘Well, I don’t feel well enough to work but I still have all this City and Guilds embroidery stuff I need to do, so I’ll go to bed with some research books for that …’
Eventually I reached a point where I HAD to go to sleep, but was still trying not to as I thought that would mean I wouldn’t sleep at night. I got to the point where I realised that I’d need matchsticks if I was going to keep my eyes open and gave in.
At this point I was still in a LOT of pain but did drift off to sleep … and woke up an hour later feeling fine! I know sleep is important, but that’s a really extreme example! And I did sleep well that night too. I must have been really sleep deprived and not even realised it!
Mind you, waking up with five to ten hot flushes (flashes) per night is not exactly helping on the sleep front.
Still, things are looking up – work is now steady (which means that I’ll be panicking in a week or two that there’s not enough), apart from one odd twingey pain in one knuckle I’m not bad on the RA front … the yo-yo is on the upswing again … and will hopefully sit at the top for a while at least!
Tags: aches, arthritis, diagnosis, doctor, general practitioner, GP, pain, patient access, practice manager, RA, referal, RF test, Rheumatoid arthritis, rheumatology
According to the Management in Practice website , which is a website for GP practice managers, the delay in getting patients proper rheumatoid arthritis treatment is the same as it was seven years ago. I suppose we should be grateful it hasn’t got worse!
Worryingly, to my mind, they say, “The Commons Public Accounts Committee has revealed that patients could suffer damage to their heart and lungs if access to treatment is delayed.” Well I have two things to say on that point. Firstly it’s not exactly a ‘revelation’ by the Commons Public Accounts Committee, but that’s more of a personal gripe about writing style than anything. More fundamentally there appears to be no recognition that patients could suffer permanent joint damage and a drastic reduction of quality of life if access to treatment is delayed. It’s as though ‘heart’ is the magic buzzword – if you put ‘heart’ in your article, at least when it comes to GPs who are forced to be target driven and probably have a big government target about reducing heart disease right now, then people might take action!
Mind you, they say that the average number of visits to a GP is four, before a patient is referred on to a specialist, and blame this on a lack of GP training. I would have thought that wasn’t soooo bad. It is hard to diagnose. It does vary enormously between patients. And it is possible to show symptoms that appear to be RA and then disappear – it happened to a good friend of mine. So I would have thought that an average of three visits (maybe not four) and attempts at less drastic treatment like ‘take Neurofen’ would not be unreasonable. I was very lucky – I had two visits before my referral and the GP spotted immediately that it might be RA and organised a blood test on the first visit. However if I’d been seronegative (negative RF test) then I shudder to think how long it might have taken!
Apparently, according to the same article on the same Commons report, “GPs receive on average only two hours of teaching on musculoskeletal conditions during their training, including minimal coverage of inflammatory arthritis.” I have to say I find that hard to believe, but if it’s true then it’s pretty scary, and it might explain why it’s taking 6-9 months to get people referred.
They also say that there’s a lack of awareness among the public of what symptoms to look for. I’m sure that’s true, and that does stop people going to pester their doctor when they have intermittent pain, but I suspect another thing that stops people going to see their GP is the difficulty in getting an appointment in the first place! But that’s another story for another post on another day …