Aspiration and injection into the knee

May 30, 2019 at 3:40 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 3 Comments
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Well … after ten years of saying ‘I will NEVER have another aspiration and injection into the knee, not for a million pounds …’ I’ve just had one! Kudos to the hospital – the day unit were fantastic – so different to the staff in the other part where you go for the six-monthly checks.

A friend drove me in and, as parking is a total nightmare there, dropped me off at the front door. I hobbled in and collapsed on a chair. After a couple of minutes the receptionist looked up and asked if I had an appointment and I said yes, but not for half an hour (we were a bit early!) and I just wanted to sit. After a minute or two I explained who I was and she said, ‘Oh, the day unit – they’re probably ready for you now – I’ll just check’, and they were. Even though I was early three staff fussed around to help me into a comfy chair, get me a glass of water and get the chair raised so I could have my leg up. Shortly before my actual appointment time they came over and said there was a bed ready just across the room. I was able to get over there but needed help getting my shoes off etc., and they were very obliging. I did have a short wait then for the doc but not too bad, and my friend had found me by then so I had company.

The doc was delightful – really sympathetic and listened carefully to the history. All my worries and midnight conversations in my head where I got frustrated with them for not listening or taking any notice of what I said were quite unnecessary. Don’t borrow trouble, Polly Penguin!

I can’t pretend the procedure wasn’t painful – but compared to the pain I’d been in earlier in the week it was nothing; and compared to when I had it done ten years ago it was nothing. I think the fact that this time it was in the hospital with an expert rheumatologist who probably injects a few knees a day, rather than in the GP surgery where she probably injects a couple of knees a year, made quite a difference!

From the doc first turning up to the whole procedure being finished and me being ready to go home was only just over half an hour.

And the important thing – did it work? Well, he warned me it might not … BUT IT DID! Yay! I’m not a hundred percent better of course – I’ve had a week of total rest for the leg for a start so if I’m up and walking for five minutes the muscles are getting twitchy – it’s a fine balance between making sure I do enough to ‘rehabilitate’ the leg and making sure I don’t do too much!

I’m still getting some mild pains now and again and, today being my first day back at work, I’m still having to rest my leg up in a slightly ridiculous way on top of my PC, but it’s a massive improvement and I’m just hoping now that the improvements will continue!

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Flare! Out of a clear blue sky …

April 25, 2019 at 1:12 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
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I’ve been doing well for ages – hence the quietness on the blog – nothing much to say – and suddenly BAM, out of the blue, I woke up yesterday morning with my usual left knee flare. Actually weather-wise it wasn’t such a clear blue sky – we’d had a few beautiful days and yesterday was a bit dull, but nothing dramatic.

I had been having more than the usual twinges in my hands and feet the last couple of weeks, but although it was a bit above the norm it was still only twinges and nothing to write home about. Then yesterday, pooof – VERY painful knee.

I had a very bad night’s sleep last night, partly because my sleep is definitely not normal in that I move a lot while asleep – and every time I moved I woke up going ‘OUCH!’ … or words that that effect, and partly because I was thinking oh, no, there’s nothing else for it, I will have to call the doctor in the morning.

Those of you who’ve read this blog a bit before will be aware that, while appreciate that it’s ‘free’, I’m not a big fan of the way the NHS is run, and our local surgery in particular, and I was literally dreading it. So how did it go? Well, I’m glad you asked. Are you sitting comfortably? Then I’ll begin.

I phoned at 8:30 when the phone lines open and got a message saying ‘You are fourth in the call queue – please hold …’ etc. I was expecting more like ‘You are number 47 in the call queue’ so that was the first of several pleasant surprises!

Then when I got through a receptionist answered I was ready to do battle to actually speak to a doctor – not for instance ‘It’s arthritis? I’ll get you a physio appointment’ etc. Yes, the receptionists triage. It’s quite mad, but there we are. Anyway, I said without thinking that I was having an RA flare and got ‘A what, sorry?’ But that was fair enough. When I said ‘A rheumatoid arthritis flare’ that was obviously something on her crib sheet. ‘I’ll see if anything’s available this morning.’ Bloody well better be, I thought, but held my peace!

‘Oh, I’ll have to get a doctor to ring you’ she said in some surprise. No doubt she heard ‘arthritis’ and initially went down the physio route I’ve bumped into before, but this time they’ve sorted themselves out and can spot the difference between osteo and rheumatoid arthritis. (Not that I’m suggesting a doctor shouldn’t see you for osteo, but they certainly SHOULD for rheumatoid!)

So I waited for the doc to call me back – and he did, within half an hour, and one of the senior partners who I rather like at that. I explained the issue and he said, ‘You’d better come in and we’ll see what we can do. Can you get in for 9:30?’ I said I could and he said ‘I’ll book you in with Dr Smith.*’ I nearly groaned aloud. ‘Is this the same Dr Smith who was a locum a few years ago? I know it’s a common name, but if it’s the same one … I won’t see him!’ (That was some twit who was exceedingly pompous, upset all the patients and nursing staff, ran hours late and told me I’d sprained something when I obviously hadn’t!) He sounded a bit puzzled and said ‘I doubt it – he’s a partner, and he’s very good. He’s not been with us that long.’ I said in that case that was fine then, and toddled in for 9:30.

The checking in system said there were three people in front of me and a 28 minute wait – my heart sank ’cause that reminded me of Dr Smith the first, and I thought oh no, perhaps it is him! It wasn’t …. and in fact the wait was only about 20 minutes which is fine. I always say I don’t mind waiting if it means the doctor is providing enough time for each patient and someone else needs that time … if it we me, I’d want a decent amount of time, thank you!

When I went in I felt instantly (mentally) better – it was VERY OBVIOUSLY a different guy. I won’t go into physical  characteristics but let’s just say Tweedledum versus a stick insect, and quite an age difference too – clearly a different guy. He was very pleasant indeed; he listened to what I had to stay, accepted that I knew my own condition pretty well, examined my knee carefully and asked sensible questions. Good heavens, I thought, have I slipped into a parallel universe?

Then he spoiled it all by saying, ‘I think we’ll try you on some stronger pain killers first.’ My heart sank – nooooooooooo, I remember last time that happened – I had opiods just when the big ‘No opiods’ thing was going on in the States – and they didn’t even TOUCH the pain! But I plucked up the courage (OK, there wasn’t much courage necessary as he was such a nice man), to say ‘I was really hoping for steroids because so far they have ALWAYS worked!’

He smiled and said ‘OK, if that’s what you want to try that’s fine. Come back in five days or so if it hasn’t worked and we’ll investigate further.’ Back into parallel universe territory again. And best of all <insert happy dance emoji here, although only a mental happy dance as my knee isn’t up to a physical one> he PRINTED OFF THE PRESCRIPTION.

‘Eh,’ I hear you cry. ‘So what? What’s that got to do with the price of fish, penguin?’ Well … they had what they (the doctors) thought was an all singing, all dancing IT system at one point. The patients, nurses, receptionists (poor things), pharmacy and nursing staff all saw it for what it was but the doctors took a while … they used to press a magic button on their computers and say, ‘There – it’s automatically gone over to the pharmacy. You can pick it up straight away!’ Only you never could! My longest wait was five hours from time of appointment to getting my steroids, and that was only because I effectively staged a sit-in at the surgery until someone printed off a scrip for me, just before they were due to close!

So anyway, I took my beautiful, green, shiny (OK, not actually shiny) printed slip over to the chemist and waited about five minutes, if that, and came home with my beautiful, white, fairly shiny steroids, of which I have taken the first dose.

I already feel better … but whether that’s the lifting of the stress of thinking ‘I have to phone the surgery’ or the steroids or the fact I had an hour resting with my leg up earlier, I’m not sure!

Here’s hoping it’s all better soon – and I hope, you, dear reader, are keeping well and flare free!

 

* Not his real name – did you guess? It was however a very common name.

Pride goes before a fall … ouch!

February 22, 2019 at 11:56 am | Posted in arthrits, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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I was just doing some snowdrop lifting (sounds a bit like sheep rustling but it isn’t!) in preparation for an art class tomorrow and I managed some penguin landing instead – crash landing!

Luckily I’m mostly fine – slight twinges in all the diodes down my right side, to misquote Douglas Adams, but certainly nothing broken or torn or, I think, even sprained. I have a horrible feeling I’m going to be stiff as a board tomorrow though- in muscles as well as joints, so an hour’s drive to the art class isn’t ideal … but I do at least have the snowdrops ready to paint when I get there!

It did make me think though … about pride coming before a fall! I should have swallowed my pride and asked hubby (who hates gardening with a passion) to do the digging for me, or at very least have waited until he was in the house before doing it. There I was, outside on a freezing cold morning (the sun had come out and fooled me into thinking it was going to be warmer), and I missed landing on the prongs of the fork (upturned in exactly the way they should NEVER be … but they were) by mere inches! Things could have been a whole lot nastier than they are.

A dear, elderly friend died this week and I’ve been blathering on about how her husband (and possibly also my mother) really ought to have panic buttons that link through to emergency services or something similar, for occasions just such as this, since they’re on their own, and then I go and have a tumble when I’m on my own – and I could have just waited until hubby was home. Silly Penguin!

So while I’m on a misquote roll, (pride comes before a fall is probably a misquote of the biblical ‘Pride goeth before destruction, and a haughty spirit before a fall’), I should also practice what I preach (misquote of ‘… do not do what they do, for they do not practice what they preach,’ from the Gospel of Matthew apparently …

Perhaps I should have made that a new year’s resolution, since I find myself also thinking a lot about (if not generally preaching about) cutting down on plastic use, but fairly dismally failing to do so as yet. ‘Must try harder!’ to accurately quote most of my school reports!

Another flare and another study

March 6, 2018 at 12:26 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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I’m just getting over yet another flare. I had a few days of feeling fine, and then bam, one of those horrible all-over body flares. No individual joint was so bad that I felt the need to visit the doctor or phone the helpline or beg on bended knee (impractical in my case of course) for MORE steroids, but with what felt like every joint in my body stiff and achy, it was a pretty miserable couple of weeks. (Yes, I’m well aware that ‘every joint in my body’ is hyperbole, but it gets you down and makes you feel like that’s what’s happening.’)

I have now started by higher dose (20mg) of methotrexate and taken it twice so far, second time last night. It’s pretty unlikely to have any immediate effect but I’m hoping that it will at least have an effect. We shall see …

Anyway, right now things are relatively good – pretty stiff in the mornings, with some aches and pains, and then it all fades and I’m pretty much OK for the rest of the day … until night-time, which is literally a pain! Continue Reading Another flare and another study…

Do as I say, not as I do!

February 12, 2018 at 4:29 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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I’m sure I’ve banged on at least once or twice on this blog about how important it is for the patient to manage their own illness as much as possible, and how important it is to keep a track yourself of your blood test results etc.

Weeeeeell, I’ve had this dratted disease for over ten years now and for quite a lot of those years I assiduously kept track of my blood test results, which never showed anything in all that time. And eventually, what with a change in the system that meant we only see the Rheumy nurse once ever three months, and they stopped issuing booklets with the results in, and given that the results never showed anything, I stopped looking. They’re available to me on line but I just didn’t bother.

So, fast forward to my last flare, not that long ago, a couple of weeks ago in fact, when the doc told me my bloods were up and I said ‘But that never happens’, turns out it happens more often than i thought.

I mentioned in that last post that my hospital appointment had been cancelled, and they originally said the next date was July (!) but then I got a call to say they were putting in a clinic to make up for the cancelled one, and that was last week … so off I toddled dutifully to the hospital. As could be virtually guaranteed, although my knee played up slightly the day before the appointment, it was fine on the day –  thankfully the steroids had done their job! Continue Reading Do as I say, not as I do!…

Good news and bad news … and good news …

January 29, 2018 at 10:38 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, crafting, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
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Well the good news is that my poor, neglected blog has been poor and neglected since RA Blog Week in September of last year because I have been really well! I’ve had the odd hip pain but only when in bed, which means I never remember to ask the doc about it because when I’m awake, I’m fine! Other than that I’ve been OK. In fact at the beginning of the month my regular 6-monthly hospital appointment was cancelled at the last minute because the doc was sick. The beleaguered receptionist rang to let me know and to apologise and was very pleasantly surprised when I said, ‘That’s fine – saves me coming in on a horrible, foggy morning and waiting around!’ ‘Oh,’ she said, ‘that’s not the reaction I’ve had so far!’ I pointed out that I felt fine and was busy at work and delighted not to have to waste all our time and she said, ‘You’re the sort of person I LIKE to ring!’ I wished her luck with the rest of the calls and that was that.

The following week I had a day off to do a textile workshop, which was great fun. (I was learning, not teaching. My last attempt at teaching was risible and should be enough to put me off teaching a workshop for probably another 10 years or so!) At the end of the day though I had TERRIBLE lower back pain – one of the worst pains I’ve ever had. I just didn’t know what to do with myself. Luckily after an early night it settled in to unpleasant but not terrible lower back pain for the next week or so. The very day after that back pain started I had my regular monthly blood test, which I thought no more about. Continue Reading Good news and bad news … and good news ……

Blinking knee again!

July 26, 2017 at 9:01 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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Sorry – not my most inspirational blog post title, but I’m not feeling very inspired!

My knee has been playing up for a couple of weeks now – mostly the left one, as usual, with the occasional twinge in the right. At first I thought it had nothing to do with RA because the pain was in a different place – behind the knee, not to the front-right as ‘normal’, and there wasn’t much swelling … but over a couple of weeks the swelling has increased a lot (in its usual place) although the pain remained mostly behind the knee. My Pilates teacher (still loving the Pilates by the way) suggested it might be a pain caused by hyper-extending the knee, which I am prone to do, so  I spent a week very consciously NOT hyper-extending the knee and then realised that, given it was always significantly worse in the morning, and that it now involved significant swelling and  greatly reduced mobility, it was probably just good old RA again. So, today I plucked up the courage to phone the doctor. (It takes courage these days, believe me!)

It seems that the receptionists have now become triage nurses! I was not impressed. We used to get ‘Can you give me some indication of the problem if it’s not personal, so I can let the doctor know’ which was a reasonable request in my view. Today I got, ‘Can you give me a brief account of the problem please.’ Well it wasn’t personal so I said, ‘Yes, rheumatoid arthritis.’

‘Oh, you want pain relief then?’

‘No, it’s a bit more than that, I’m having an RA flare.’

‘Have you seen a physio? Do you think that might help?’

‘No, I don’t think so. I’m having a rheumatoid arthritis flare and I need to speak to a doctor.’

‘Oh … OK then …’

I actually wrote to the surgery via their contact form and told them what had happened and asked what training the receptionists, being non-medical staff, had if they were now supposed to be triaging to this extent. I said that I felt it was inappropriate and that the comments suggested a lack of understanding of the difference between RA and OA. I haven’t had a reply and I don’t expect one.

The doctor eventually phoned back at 11:30, meaning it was too late to go for the blood test that I should have gone for today, because you have to be there before 11! I explained the problem with my knee and he asked how long this flare had lasted. I explained that it’d been a while because I hadn’t twigged it was RA at first due to the pain being in a different place.

Now … this my American friends may find hard to swallow, but here goes … he asked about pain relief and I told him I was alternating paracetamol (Tylenol) and ibuprofen and it wasn’t cutting the mustard. He wondered about codeine and I said no (for stomach reasons). I asked about steroids and he said no, not yet, because ‘they can be problematic’ and then prescribed me a great big box of opioid pain relief tablets (meptazinol), 60 of the things! He said to try them out because if they helped it would be useful to know there was something else in my arsenal, which is true … and if they didn’t work, to come back next week and they would have me in for an examination and consider steroids … because all this was done over the phone.

So while you guys in the US can’t get an opioid for love or money now, or not without jumping through a million hoops, I just get handed 60 over the phone with a comment on the lines of ‘Don’t use them all at once. They’re only short term.’

He told me that the prescription would be with the pharmacy ‘in five minutes’. Luckily I took this with the pinch of salt it deserved because when I went to the pharmacy 1.5 hours later it had only just arrived!

Now he was probably, very sensibly, thinking ‘She’s had this two weeks, her flares rarely last even this long, it’ll probably be over in a few days and the pain relief will provide just that, relief, while it’s on its way out.’ And if he was thinking that, full marks to him because he’s probably right.

However, there’s a nasty, suspicious part of me that thinks even though the surgery says any comments and complaints won’t prejudice your treatment, he’s seen the comment I sent in and is thinking, ‘If I give her pain relief first, it makes what the receptionist originally said right …’ That’s probably nonsense – I’m prepared to admit to a tendency to be paranoid… but with the world going to pot in the way it seems to be at the moment, who knows!

I do have some comfort in the fact he’s a doctor I’ve seen before (actually face to face seen, a miracle these days) and do actually have some respect for, partly because I felt that he treated me as an intelligent person … so it’s far more likely he’s just easing me out of a flare with much reduced pain – and it IS much reduced. Of course it’s done nothing at all for the swelling or the lack of mobility in the joint, but it’s great to be relatively pain free and we’ll see how things go in the next few days.

Woohoo for Pilates… and other news!

April 22, 2017 at 5:39 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
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I have just realised I haven’t posted on this blog THIS YEAR! Shocking neglect! Part of the reason is that I haven’t been having much in the way of RA problems – things haven’t been perfect but I’ve felt generally much better since Christmas than I have for quite a while … until a couple of weeks ago, when I started to get morning stiffness (I’ve had NONE most of the year) and some pain.

Now various things could have been the (or part of the) root cause of this. We were on holiday three weeks ago (lovely time!) and that meant I had much more caffeine and much more gluten than I normally would – but I’ve been relatively good since I got back and it was only a week away. Then holiday also upset the routine and therefore the sleep, and sleeping badly always adds to the aches and pains.

However, one big thing is that I have been having weekly Pilates sessions since November (I think, maybe October, maybe early December!) and felt a lot better after the first few of those … and due to my holiday and then Easter I’ve had three weeks without a Pilates session. I suspect this has FAR more to do with the increase in pain than anything else, although of course I can’t prove it.

Anyway, I had my first session for three weeks yesterday and felt MUCH better after it … although I still had a lot of morning stiffness and pain today. Hopefully after another session or two I’ll be back on track.

In the meantime, a really excellent new NRAS magazine arrived last week – one of the many interesting articles hinted at a link between fibromyalgia and sleep (although that wasn’t what the article was actually about), and that is something I’ve been thinking for quite a while so it’s interesting to see the medics sniffing round the same idea.

Another interesting article discusses (briefly) a study carried out in San Francisco on why some people don’t respond well to anti-TNFs. Patients who have a higher proportion of an inflammatory protein called type 1 interferon beta, compared to type one interferon alpha, respond less well. Also monocytes (a type of white blood cell) behaved differently in different people. This could lead further down the interesting path of being able to personalise treatment more by understanding a patient’s personal biology, but also perhaps (my suggestion not the article’s) indicates another thing that’s been being suggested for a long time by a lot of people … that RA is not just one disease but many lumped together under the same label.

There are also various grim reminders that being overweight can cause further problems for people with RA so I need to get back on track with the diet, which has gone to pot a bit since the holiday! I did manage to mostly avoid chocolate at Easter … but then went and entered a raffle on Easter Monday with a table full of all sorts of prizes and got a call the other day to say I’d won … a chocolate bunny! Oops. Oh well, I thought, perhaps it’ll just be a little one. I picked it up today. It is labelled ‘Giant Chocolate Bunny’.  Perhaps I’ll do the sensible thing and give it away …  🙂

Cloudy with a Chance of Pain – again

September 10, 2016 at 2:15 pm | Posted in arthrits, joint pai, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
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Preliminary data can be a dangerous thing, but the gloriously named ‘Cloudy with a Chance of Pain’ study, which I blogged about here when I first signed up for it, has produced some very interesting preliminary results. They have participants across the country and indeed internationally, but for the initial results they were focusing on two big cities (Leeds and London) and one rather smaller one, Norwich, quite close to me. They looked at chronic pain in general (not just arthritis) and found a link between wet weather and an increase in pain – something many of us have been muttering about for years (indeed people have been muttering about it for centuries), but which has never been seriously studied before so far as I know.

The Cloudy study works by getting patients to fill in an app each day which measures wellness, pain levels, stiffness levels, time spent outside, fatigue, tiredness on waking, air pressure (based on your phone letting them know where you are so they can find out the pressure from that) and possibly some other things I forget.

I’ve had some frustrations with the study, most notably that they lost five weeks of my data, which I’m still fuming about, although they did send a nice apology, which stopped me ranting at them any more. (Yes, I had the odd rant or two … sorry guys!) As time has gone on though, the app has improved a lot. It now allows you to graph any two measurements from the list above against each other to see if there are any obvious correlations. It’s then also possible to go onto the website and look at massed data for all participants, which you can then attempt to analyse and send in your own suggestions as to what the heck’s going on. I’ve not tried that – I’ve been too busy making a living – but it does sound like fun.

Interestingly, and if you’re in the UK and reading the blog I’d be mighty surprised if you haven’t heard about this already as it’s made a huge splash (pun intended) in the media, their preliminary data does suggest a link between chronic pain and wet weather. You can read more about it here on the Cloudy blog. Now it is preliminary, but it certainly does look promising. Another six months to go until the end of the study, and then we’ll see what they find out.

So do my graphs correlate – pressure and pain? Erm … nope, not really. Funny thing is they were correlating beautifully right up until the point they lost my data (thanks guys) but after the five-week hiatus pressure and pain haven’t correlated especially well. I wonder if that’s because I’ve generally not had much pain for the last couple (until yesterday, which is partly what reminded me to write something in my blog!) I think maybe if I’m already suffering, then things get worse when it’s wet. If I’m going through an ‘under control’ period, then it doesn’t matter how wet it is, I’m fine. That’s just speculation though – I’ve not tracked it properly. Maybe in another six months I’ll have a better idea.

So keep it up, Cloudy team – you’re doing a great job … even if you (or rather umotif, whose app it is) did lose my data. (Me, hold a grudge … never …)

The frustrations of not having a relationship with your doctor

June 29, 2016 at 4:32 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 7 Comments
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Thanks to the state of the NHS today (which, if you read this blog often you will know I harp on about endlessly) it is simply not possible to have a relationship with your GP these days (unless you’re incredibly lucky or live on some tiny island that actually has its own GP or something!) My GP practice has around 10 GPs plus locums. It’s pot luck who you get to speak to when you call and they phone you back, and then if they decide you should be seen you won’t see the person you spoke to that morning.

It also seems that they don’t have much of a relationship with the hospital and seem to have some sort of mythic belief in the power of the rheumatology helpline, as I’ve also mentioned before.

The myth

The patient calls the GP because they have an RA flare. This is a shocking waste of the GP’s time because these lucky, .lucky patients have an RA helpline that they can call and that will solve all their problems. They can speak to a lovely nurse* straight away and the nurse will wave her magic wand, waggle her magic pixie ears and solve the patient’s problem.

* Actually that’s the only true bit – the one we have at the moment IS a lovely nurse!

The facts

The lovely nurse, or even a secretary or receptionist, never EVER answers the helpline. It is an answerphone. That’s the way it’s set up. It’s not an answerphone on odd occasions when they’re exceptionally busy, it’s ALWAYS an answerphone. The message on the helpline says something like: ‘If you’re calling about a non-RA related problem, please call your GP. If you’re calling to change an appointment, please call reception. If you’re calling about an urgent need, please call your GP. If you’re calling to buy fish, please contact your fish monger. If you’re calling to moan about Brexit, please contact your MP. If you’re calling because you’re a moron, voted ‘Leave’ and can’t work out what a helpline is for, please call someone else and bother them. Now, if you really, really want to leave a message, we suppose you can. Give us your hospital number and name and telephone number and we’ll try to call you back in 24 hours – but no promises mind.’

I don’t know about you (actually I probably do, if you have RA) but I consider a flare pretty urgent.

While in an ideal world I would sit back on a couch, watch the telly and let my servants feed me grapes while I rested my knee and waited to see if it would clear up on its own, I do actually have a life (and no servants, and hubby is great but also has a life, and the cat just ain’t interested in helping), so I can’t just sit about and rest it. On that basis I can’t wait potentially 48 hours or more for the helpline to phone, and the nurse say, ‘Call your GP and get some prednisolone’ because then I can’t call the GP until Monday  as 48 hours is Friday morning and by the time I’ve heard back from the helpline the GP has run out of appointments. By that time I will have been flaring for over a week!

What Polly did Next

So … I went to the appointment grudgingly granted me by the grumpy GP. (Ooh, nice alteration that penguin!) Fortunately it’s with a much more pleasant locum GP than the one I spoke to on the phone. Unfortunately of course she doesn’t know me from Adam (or strictly speaking, as a doctor, she can probably spot I’m not Adam from the wobbly bits, so I should say she doesn’t know me from Eve). This means that she doesn’t know if I’m a moron or not, and therefore has to assume I am, as we always have to cater for the lowest common denominator.

‘How can I help you?’

‘I’m having an RA flare in my knees, as usually particularly in my left knee. It’s stiff, not very flexible and painful at times.’

‘Have you called the helpline, because really -‘

‘Yes.’

‘Oh, and what did they say?’

‘I said I’d called them, not that I’d spoken to them!’ I then explained, gently, ’cause she was a locum and therefore wouldn’t necessarily know any better, the realities of the helpline. (I didn’t mention Brexit or fish mongers.)

‘Hmm, you had a blood test only yesterday and your bloods were hardly elevated at all.’

‘They never are.’ The mere fact that my bloods are even a smidge elevated is a pretty strong indication of a flare with me. Sometimes I flare and there’es no indication whatsoever in the bloods. Now this is where a doctor relationship would come in handy. If she’d actually known me, known that I’ve had RA for nearly ten years, known that I’ve had umpteen flares in my left knee, known that blood tests are not a helpful indicator with me, known that I have a brain, we could have skipped the pointless bits, more of which are coming up.

‘Ah, well let’s have a look.’ Prod, poke.

‘Aaaaaaaaaaaaaaaaaaaaaaaaargh!’

‘Did that hurt when I pressed there?’

‘No, I just thought I’d make screamy gurgling noises for fun.’ (Nope, I didn’t really say that either, I just said yes.)

‘Can you bend it?’

‘This much.’ Demonstrated a very slight bend.

‘Ah. Have you tried pain killers… like paracetamol?’

I’m afraid I just looked at her and laughed, finally managing to choke out a ‘yes’, followed by ‘interspersed with ibuprofen.’ She looked amazed that I’d been able to think of painkillers all by myself.

‘Well I’ll prescribe a course of steroids. Now if they don’t work, we’ll have to consider other possibilities like osteoarthritis, as they should work for RA.’

‘Well, they’ve worked every other time I’ve had them, so touch wood that they will this time too.’

‘Oh … right.’ Look of mild astonishment, either that I’d had them before (it’s in the notes dear) or that I actually knew that I’d had them before, who knows.

So I thanked her very nicely, ’cause I’m a well brung-up penguin … and I might run into her again, and off I went to the chemist to get my steroids.

Again, after nearly ten years of RA, I think I recognise an RA flare when I see one … I really hope I’m not proved wrong and that the steroids do work again this time and it doesn’t turn out to be OA. That would be sooooo embarrassing after this post!

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