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, neck pain, pain, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis
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!
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!
From probably the most neglected arthritis blog in the world! I suppose I’v been (fairly successfully on the whole) trying to forget about my RA, which means, to some extent, abandoning my poor blog, although I do check and visit my friends now and then. So if you want to read some really good stuff about (or at least mentioning Word Arthritis Day) you can’t do better than to check out some of those. Warm Socks and Amanda at All Flared Up both have great posts. I’m sure there are plenty more out there – check out the blog list in my side bar … but alas, I haven’t got time to do that right now – deadlines at work are pushing my beak to the grindstone right now!
Also please do check out the IAAM newsletter and perhaps even purchase some of their fun bits and bobs. They’re doing a great job in increasing people’s understanding of inflammatory arthritis – something I know everyone who suffers with it struggles with!
Tags: arthritis, consultant, doctor, GP, NHS, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), thyroid
OK, here’s the thing – the geniuses at my local NHS physo department (or should that be genii?) have decreed that in order to ‘be in line with the private sector’ they will only give any patient a maximum of six appointments before they kick them out. (The last three words are, of course, my terminology and not theirs!)
I asked Lovely Physio how this was ‘in line with the private sector’, as I had had to have quite a bit of private treatment before I got into the NHS programme and oddly enough they hadn’t been anxious to see the back of me after six appointments. No surprise there – I was paying them. Why would they want to be shot of me? She said something like, ‘I have no idea, but that’s how they’re presenting it to us!’
I suspect the idea is that by ignoring the fact that there are people with chronic conditions who can benefit enormously from regular therapy and pretending that everyone they see can be ‘cured’ in six appointments, they can massage their figures by getting the waiting list down from the current five weeks to a more ‘in line with the private sector’ one to three weeks.
The complexity of the system emerges from the fact that it’s general practitioner budget that pay for this treatment, but once you were being treated, until now, it was up to each physio to decide when and if to discharge. The GPs had little or no say, but they had to pay. So the idea is that you now have your maximum of six appointments and then go back to the GP if you feel you need to still see a physio, to get re-referred, as I mentioned in the previous post. The GP can, of course, say no. I suspect if I see the one that knows me she would say yes … we’ll have to wait and see, but even if she does we’re looking at a five-week waiting list right now.
One silver lining in the cloud – they have an SOS system whereby if I need to see my physio in the next couple of months I can phone and make an appointment saying I’m on the ‘SOS list’. I can then go in under that and have maybe six appointments then before getting kicked out! Hopefully I won’t need to see her in the next two months, but last time I thought that I only lasted three weeks …
Unfortunately I feel I have very little fight in me at the moment – I don’t know if that might be something to do with the thyroid issues i might or might not have, but that’s the way it is!
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: 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 …
Tags: arthritis, diagnosis, occupational therapist, OT, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA)
Is it me, or do others with rheumatoid arthritis see RA possibilities everywhere? I’ve told my bro, who has had neck pain for years and gets inflamed knuckles, that he really should get an RA test, even though it’s incredibly unlikely in a lad his age. (Unlikely but not impossible, as Rhuematoid Arthritis Guy can testify, and not an unreasonable suggestion given that he’s my brother and we do have family with RA.
However, it starts to get a bit silly when you’re sitting chatting to someone and start thinking ‘ooh, they get stiff in the mornings; could be RA.’ Well yeah, I have to remind myself, but when they say stiff they probably mean their muscles ache a bit because they went jogging last night, not that they can’t move their joints. But then again, RA is notoriously hard to diagnose, so when you’re sitting in the OT’s room chatting to another patient who is being treated for ‘carpel tunnel syndrome’ in both wrists, has been referred to the podiatrist because of pain in both feet, finds it hard to grip the steering wheel for any length of time, gets ‘dead arms’ in the middle of the night just like I do and finds it difficult to be a passenger even in the car for long journeys because when she gets out she’s ‘stiff all over’ … oh yes, and this all started with ‘the change’ … you can’t help wondering, can you? Or can you? Is it just me?
It’s hard to keep your mouth shut sometimes, but I managed it. For all I know she’s been thoroughly tested for it and hasn’t got it, but I couldn’t ask; I’d never even met her before that day. It makes me wonder even more because when I was diagnosed with RA I’d gone to the doctor saying, ‘Help – I think I’ve got carpel tunnel syndrome!’
I suppose I shall never know, and I really hope I’m barking up the wrong tree altogether, for her sake … but I can’t help wondering. Am I being silly?