Tags: arthritis, diagnosis, doctor, fatigue, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, tiredness
This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” My previous post on this is here.
As I said in my previous post, these days RA doesn’t have such a huge impact on my life. In fact I almost feel a fraud posting about it, but there are some little things, and some equally small hints and tips on coping with them, that I can post about.
Other than making sure I take my medication really regularly, I don’t have to do an awful lot to manage my RA but one of the most important things I do is wear orthotic insoles in my shoes. It certainly helps being married to a chiropodist! These insoles have made a massive difference to me over the years. They’re now just a part of life, but if I do have occasion to wear ‘fancy’ shoes or, as I did yesterday, wander downstairs with bare feet without thinking, I soon know about it – and not in a good way! I had painful feet for years before diagnosis whenever I spent a bit of time walking about, and I just assumed it was the pain everyone had when they said ‘Ooh, it’s good to take the weight off your feet!’ It didn’t dawn on me for ages that when I took the weight off my feet they still hurt, and other people’s didn’t!
Another little tip is warm water – warm water is a wonderful thing if your hands are stiff first thing in the morning! I rarely get significant morning stiffness but if I do, plunging my hands into a sink full of lovely warm water really does help. (Hubby will read this and suggest I should do more washing up, I dare say!)
The other major effect RA has on me, and the most difficult one of all to get through to people who don’t understand the disease (including family, doctors, family who are doctors …) is the fatigue! This really is a big problem and the only way I can deal with it is to pace myself and try to keep to a boring routine of early nights and early mornings. (Obviously if late mornings are an option for you, that’s fine – they aren’t for me as I work full time.) People always pull faces and think I’m making excuses when I’m being a party pooper at 9 pm … and maybe they’re right as I’ve never been a fan of parties … but really, an early night and a good sleep makes all the difference to me.
The final thing is flares – even though my arthritis is mild and controlled I still get flares. They’re a fact of life. The hardest thing is to remind myself during a flare that it may seem like a dark tunnel but there IS light at the end of it. It’s ridiculous – every time I have a flare I feel as though THIS IS IT and things will never be right again. After seven years since diagnosis and quite a few flares you’d think I’d be over this but I’ve spoken to other RA sufferers and people who have other diseases that also flare and die down, and many seem to go through the same thing. It’s not sensible but I haven’t yet found a way to avoid it! So if anyone would like to offer me a hint or tip on this, it would be appreciated! :-)
Tags: cumulative, cumulative effect, Dr Chris Moore, fibromyalgia, pain, paracetamol, Rheumatoid arthritis, tylanol
I woke up this morning and said to hubby, ‘Yay! Good news! I didn’t need to take any paracetamol last night and I don’t need them this morning either! Isn’t that great.’ He agreed it was great. (He’s nice like that.) 11 am today and I was STILL feeling fine – hurrah, I thought, this dratted flare is finally over. Then, out of the blue, bam, agonising stabbing pains in my ankle. Then the light dawned – oh dear – I bet paracetamol has a cumulative effect.
I’m a bit of an idiot really. I KNEW it had a cumulative effect from the point of view of overdosing, and if has that then it’s likely to have a cumulative effect for pain too I suppose! Feeling a bit silly now!
Anyway, there’s a fascinating article here by Dr Chris More, a fibromyalgia sufferer her/himself (doesn’t specify gender on site, so far as I can see!) Actually, I’ve had a wee browse around the site and I think it’s a great resource for anyone with pain issues, not just fibromyalgia sufferers, so I will be adding it to my blogroll too!
Tags: arthritis, doctor, folic acid, GP, joint pain, medicine, NHS, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatology
I’m Pollyanna right? I can do this glad-game thing! OK, I’m glad I’ve had to go to the surgery and the chemist three times this week because it’s given me an opportunity to enjoy more of the beautiful spring weather (in between the showers). I’m glad the doctor completely screwed up my last prescription in three different ways, because otherwise I wouldn’t have had that lovely experience I’m so glad about. I’m glad that I had to go in to the surgery reception tonight and point out that even after a conversation with the doctor yesterday, he had not sorted out the correct repeat date for my folic acid, because if I hadn’t, I wouldn’t have had that amusing conversation with the receptionist about kicking her cat.
Hmm … doesn’t sound too convincing, does it, really? Well I am at least trying – but it’s very trying, especially as I’m still at the tail end of a flare.
Here’s what happened – in brief – I hope, although I do have a tendency to waffle on, as you may have noticed.
I put in my repeat prescription as normal, picked it up Monday, got it home and realised that my folic acid was missing. As my folic acid was the only thing I’d run out of (I just ordered all the RA drugs at once to save another visit to the chemist) I was a bit peeved. I contacted the surgery reception and had a conversation something like this:
Polly: I’ve collected by repeat scrip but it doesn’t include my folic acid.
Receptionist: Ah … let me look it up. Oh I see, that’s because you’re not due any until March.
Polly: Yes I am, I’ve run out.
Receptionist: Oh no, you can’t have. You see it was issued last month, and you take it three times, on Wednesday, Friday and Sunday.
Receptionist: So that’s three times a week
Receptionist: And they issue you twelve, so …
Polly: Yeeeeeeees …
Receptionist: <lightbulb going on> Oh! That is actually a month’s worth, isn’t it?
Receptionst: Oh … in that case it looks like the doctor’s made a mistake.
Well, to cut a long story short(ish) that wasn’t the only mistake he’d made, so although I was able to have my folic acid rushed through and pick it up in time for me to take it on Wednesday, I then realised there were two other things (non RA-related) also missing from my prescription! I checked the repeat prescription paperwork and it quite clearly said that those things were due now … and that the next batch of folic acid was due in … April.
So I phoned again and asked for a doctor to call me back to discuss this, which he duly did! I had a very pleasant conversation with him, while being driven to my mum’s house by a colleague in order to turn off mum’s faulty burglar alarm … but that’s a whole nuther story … and, after an entire repeat of the conversation with the receptionist – ‘You take it three times a week … we issue twelve … OH!’ etc. he assured me he’d change it on the system and also put through a prescription for the other two things.
Tonight I went to pick them up, feeling happy, relaxed and full of the joys of spring. I went into the chemist and sure enough they did have my other two items ready. Hurrah. Then, foolishly perhaps, I checked the paperwork. Instead of saying ‘Folic Acid – due 26 March 2014’ in nice, neat print, it said ‘Folic Acid’ and then 26 March 2014 scribbled in in biro over the printed ’26 April 2014’! All very well except that a) I could do that myself, and indeed when I next put in a repeat request the doctor (probably not the same one) would assume I HAD done it myself and just not issue me any, just like the last two months and b) what happens when I want some more in May or June or whenever and the issue date is for two months down the line again?
So I went in and, having honestly been really nice and polite to the receptionist the first time (and not mentioning breathtaking incompetence at all), and really nice and polite to the doctor (in spite of mum’s alarm going off in our ears in the middle of the conversation), this time I blew my top, flipped my lid and generally had a big squawk! The receptionist was lovely – didn’t apologise exactly, they never do I’ve noticed, and neither do the docs, probably terrified if they say sorry I’ll sue them for something, but was very helpful. She put in a note for the doctor saying it did need to be changed, please, and suggested I call tomorrow to find out if it’s actually been done. (She obviously has as much faith in the system as I do!) When I said that I was sick to death of going in there and had had to come in three times in the last three days she said, ‘You should try working here. I love my cat, but honest to God I go home each night and want to kick it!’ Don’t tell Enormous Cat, but this evening I knew how she felt!
Tags: appointment, blood test, disaster, NHS, Rheumatoid arthritis, rheumatology, rheumy nurse, walk-in
Here’s the thing. You may remember that I said back in November that the hospital were happy for us to have 3-monthly blood-tests for methotrexate? Well it turns out that I’d misunderstood. It appears that the hospital are happy for us to have monthly blood tests but only see the surgery rheumy nurse three-monthly. They are NOT happy to have methotrexate patients checked only three-monthly.
Well that would mean attending the walk-in blood-test appointments, and if you reading my most recent post on this you’ll know they’re a joke – or they would be a joke if they weren’t a tragedy. Today I attended my three-monthly test and had a wee chat to my lovely rheumy nurse about the monthly tests.
They seem to have put the blood tests on a Wednesday now, although my last notification was for a Thursday – perhaps it’s both now. If so, it’s not helping. The nurse freely admitted that the system was a disaster and I witnessed the rugby scrum as the board with the little numbers stuck to it was brought out by the receptionist.
Walking-sticks flying, old people beat others out of the way as they charged toward the board, knocking down the poor receptionist who was trying to attach it the wall. An ambulance had to be called to cart off the trampled people when the scrum was over.
OK, I exaggerated just a tad there, but not as much as you’d think!
In spite of the fact that there’s a notice up saying ‘Unless you have a really important personal reason or work, please don’t come in before 9:30 for the blood test’ I don’t think one person in the scrum was under 80. Now the thing is, from experience they all know that there’s going to be a 1.5-2 hour wait, and they have lives too – why on earth should they wait 2 hours just because they don’t have work – so I don’t blame anyone, of any age for coming in at 8:15 plus rather than 9:30 – but the whole thing is just a failure … and surprise surprise, staff are going off sick with stress – so would I be, I think, under the circumstances!
The only light at the end of the tunnel maybe, maybe, maybe, the hospital will see that people are not ‘complying’ with their monthly tests and then tell the surgery they have to reinstate tests with the rheumy nurse each month – I don’t suppose that will happen though. They’ll probably just tell the patients off instead.
It’s not the lack of rheumy nurse I object to – it’s the lack of an appointment time , and a sensible one at that, that doesn’t assume each patient can be dealt with in 2.5 seconds or whatever their crazy trial showed!
Tags: arthritis, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA)
‘What?’ cries anyone that knows me. ‘You? Chatting on Facebook? Didn’t even know you knew HOW to chat on Facebook.’ Well … just about… with a bit of help. This is for IFAA – International Foundation for Autoimmune Arthritis. I’m one of their ‘blog leaders’ helping to spread the word about their work … although I’m not very good at remembering to post etc. so I thought I should make the effort to get over Facebook-phobia! Here are the details about the chat but NOTE IT IS 8:30pm UK time!
Here’s the link: https://www.facebook.com/IFAutoimmuneArthritis Hoping to ‘meet’ you there.
Tags: arthritis, doctor, GP, methotrexate, NHS, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, work
Something odd’s been happening lately. Several times I have suddenly smelt (and even tasted) hairspray – and once or twice it’s been a taste sitting at the back of my mouth/throat for hours and hours. The first time it happened I assume my colleagues (aka the junior penguins) had been drastically overusing the stuff, although neither of them looked lacquered (!) but the following day I woke up with the same thing, so I figured I couldn’t blame them after all.
Then it went and I thought no more about it for a few days … and then it came back! At its worst it’s really very unpleasant indeed – it makes everything taste slightly odd, even put me off my coffee for a short time, which is unheard of!
And then it went again.
I can only think of two serious possibilities for what might cause this, given that I don’t own any hairspray and it’s definitely not the JPs’ fault! One is a bit gross, so GROSSNESS alert, skip the next paragraph if you don’t want to be ‘grossed out’.
OK, here goes – I’m just getting over a nasty bout of sinusitis – and part of that is (or can be) having blood and puss form in the sinuses which then has to … erm … find a way out! The way out is either via the nose or down the back of the throat … and in my case (gross bit) it was doing both! Now blood has a sort of metallic taste that could, I feel, be confused (especially in my naturally confused state!) with the metallic smell/taste of hairspray. Of course you may have never tasted hairspray – lucky you! I’ve managed to ingest a bit now and then over the years when using it!
OK, that’s the gross bit out of the way. The other, very faint I think, possibility is the methotrexate. The posh name for an unexplained metallic, foul or unpleasant taste in the mouth is Dysgeusia and it has been reported, very rarely, as a side-effect of the methotrexate. However, the little I can find about it SEEMED to suggest that it doesn’t go away, and the only thing that makes it go is stopping the cause – i.e. stop taking the MTX. Well, it’s not THAT bad! I think the MTX has done me a LOT of good, so a bit of a bad taste in the mouth I can live with. Then again … it may be nothing to do with it anyway.
Needless to say, I won’t be popular with our stressed NHS doctors if I make an appointment and say ‘I’ve got this funny taste in my mouth…’ so I haven’t bothered. What I will do is see how thing are tomorrow morning, given that I take my methotrexate tonight. I THINK it’s been worst on Tuesdays the last couple of weeks, but am I just imaging that? I’ll find out tomorrow!
Tags: arthritis, clinical commissioning, GP, NHS, nurse, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Last time I had my monthly (now three-monthly) rheumy nurse appointment at the surgery, they happened to be running the first walk-in blood test clinic. These will run every Thursday – no appointment necessary, just turn up any time on Thursday, take a ticket, sit down, wait to be called and have your blood taken. No actual nurse appointment – in and out, ram in the needle, suck the blood, off you go. Well … that’s the theory.
My rheumy nurse had blithely assured me that they had run trials on this and each person could be seen and sent on their merry way in 1.5 minutes. I’m sure you won’t be surprised to hear that this wasn’t quite the way things were going on the day I happened to be there. As I say, I wasn’t there for one of these walk-in tests – I just had the dubious pleasure of observing while waiting for my appointment. I am supposed to go along in a couple of weeks time for one.
Well I arrived around 8:30 for my appointment and saw a big board on the wall with raffle-ticket type numbers on it. They had obviously run from 1 to 50 but 40 of the tickets were already gone and the waiting room was alarmingly full. As I sat down a weary looking phlebotomist poked her head round the door and yelled ‘Seven … seven? Is number seven here?’ Number seven was not there – I think number seven had got fed up with waiting and gone home!
‘Eight … number eight?’ A grumpy woman got up and pointed out she’d been there since 7:30 that morning and had now waited an hour for one of these quick appointments.
When I went in for my appointment (dead on time, bless her!) my dear nurse looked a tad frazzled. ‘What IS going on out there?’ I asked, and she explained that this was the first run of this new system, they were two nurses down and the practice manager was on holiday! She was trying to fit in the odd ‘walk in’ patient on top of her full rheumy list, to help out.
Well – that couldn’t be helped, could it? I mean if people call in sick, you’re stuck, aren’t you? No one to blame. And of course the NHS can’t afford to employ locum/bank nurses to fill in – just one of those things, I thought.
Then I thought again. I know this place, I thought … ‘Erm … dear rheumy nurse,’ says I, ‘how long have these ladies been off sick?’
‘Oh, don’t!’ says the dear nurse, ‘Joan’s been off so long I can’t even remember and Julie’s recovering from an operation so she’ll be off a while.’
Right … so whose bright idea was it to start off this system KNOWING they were two staff down and couldn’t possibly cope? I don’t know but I can guess … someone who was on holiday, perhaps?
By the way, when I came out from my 15 minute appointment there was a nurse shouting ‘Ten … number 10 …’
So ‘we can turn these people round in 1.5 minutes’ had apparently turned into ‘We can turn these people around in … um … probably about 15 minutes’ given that there were two nurses doing this walk-in full-time and others stepping in when they could.
Number 43 was off the board by then – I wonder how long until they ran out of tickets – I overheard a receptionist saying, ‘Oh, I think they’ve all gone – you’ll have to come back next week’ to someone, before realising there were some tickets left, so presumably there are only 50 slots and ‘Turn up any time on Thursday will actually mean ‘Turn up before 9 on Thursday or you’ll be out of luck.’
Of course the new Clinical Commissioning system that is now in place but not in place and has no one actually running it is no doubt partly to blame … but that’s a whole nuther story …
Tags: arthritis, award, blog, healthline, Rheumatoid arthritis, rheumatoid arthritis blog
Hurrah – Pollyanna Penguin’s blog has been nominated for Best Health Blog by Healthline … along with a HUGE number of other blogs, including a goodly number of those in my blogroll … maybe even all of them, I haven’t checked – certainly Carla’s Corner and Rheumablog are up there too, as is Rheumatoid Arthritis Guy, Rheumatoid Arthritis Warrior – who came second last year, pipped to the post by a breast cancer blog.
You can vote for US ALL (and more) here if you want to – or if I manage to set up a nifty little voting widget like Wren has on Rhuemablog you can vote through that – and if you can cope with the slightly convoluted ‘Vote via Facebook or Twitter’ system and the fact that to find the blog you’re looking for you have to keep clicking on ‘alphabetical’ and guessing what page it’s likely to be – here’s a clue – I think we’re on page 15 at the moment and all the others beginning with R are not far after!🙂 However, make sure you’re in ‘alphabetical’ and not ‘popularity’ or you’ll be completely thrown!
All votes greatly appreciated – there are many more deserving than me – so go vote for them … but while you’re at it I’d love to have a vote too! <Grin>
Tags: arthritis, blood test, doctor, GP, hospital, methotrexate, MTX, NHS, R.A., rhematoid arthritis, Rheumatoid arthritis, rheumatology, surgery
The hospital has decreed that patients on methotrexate for RA no longer need monthly blood tests – they will now be three-monthly instead. Now I don’t have a problem with having my blood tests every three months – as yet I’ve never had a single blip in my tests and if the hospital say three-monthly is safe I suppose I have to believe them and not just assume this is purely a cynical money-saving exercise: ‘Hey, what’s the odd life lost compared to a few thousand pounds saved, eh? Let’s do it! Right lads, down the pub …’
What I do have a problem with is the fact that they can’t book tests three months in advance, and yet we’ve been told to contact the rheumy nurse to make the next appointment. There IS NO WAY to contact her except by making an appointment to see her … a bit of a circular argument! My sensible and lovely nurse realised this straight away and in fact pointed it out to me with a comment on the lines of ‘I’ve told them ALL individually in reception, so don’t take any nonsense if they tell you that you should have booked it through me!’
OK, so that’s hopefully sorted out even before it becomes a problem, but how crazy that we can’t just book the tests when we see the nurse!
The surgery have also arranged monthly ‘walk-in clinic’ tests for the months we don’t see the rheumy nurse … but that’s a whole nuther story … a post to come in a day or so.
Tags: arthritis, Arthritis Research UK, fundamental science, joint pain, medicine, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), Rheumatoid Arthritis Pathogenesis Centre of Excellence, rheumatoid arthritis research, rheumatology, scientific research
Look around the RA blogging community for a while and you’ll see some consistent themes. One is that it’s hard to explain to Joe Public what RA is – another is that most of the drugs are by-products of research into other diseases (methotrexate for example, and most of the biologics were developed as cancer treatments) and there is little fundamental research into RA.
That picture has been getting better over the last few years, and it’s taking another step in the right direction. Arthritis Research UK, along with the Universities of Glasgow, Newcastle and Birmingham, is funding a major new initiative, the Rheumatoid Arthritis Pathogenesis Centre of Excellence, to be run from Glasgow. The centre’s main focus will be on why RA starts, why it attacks the joints, and why it doesn’t stop. These are fundamental questions, basic science, but the answers, if they can find them, are likely to lead to a host of potential new treatments.
As I understand it the ‘centre’ is virtual rather than physical, but it will mean the three universities and other partners undertaking major collaborations into these fundamental areas.
Science is a slow business – results may be a long time coming – but it’s great to know that there is a good level of funding for this fundamental research into rheumatoid arthritis.
And remember – if you’re based in the UK too, you can get 20% of Physicool products until 9 November 2013.