Tags: aches, advice, arthritis, fatigue, flare, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I’m taking a ‘wildcard’ option today. The topic is ‘Biologics’ but I’m still on good old methotrexate and likely to remain so unless things get much, much worse, because biologics aren’t an option for mild RA in the UK. So there are two wildcard options – depression and advice. I don’t suffer from depression although a flare certainly makes me low and grumpy, so I’m going for advice.
What advice can I offer people who’ve just been diagnosed? Well, off the top of my head, here goes. I’m sure there are many more sensible things I could have said if I’d been more organised about RA blog week – but this is me!
- DON’T PANIC!Perhaps I should display this in ‘large, friendly letters’ across my blog, a la Hitchhikers’ Guide.
- Listen to your doctors and nurses, but don’t assume they know it all. (That’s for them to do and they usually do, but it’s not the case
- DON’T PANIC specifically about the side effects in medications. Most people don’t have any side effects. You might be lucky, you might not – but if you don’t try, you’ll never know. I’ve been lucky and had only the most minor of side effects, or none at all.
- Get advice from the RA community – local support groups, online support groups (such as Health Unlocked in the UK) and local or national charities e.g. NRAS in the UK, who I have found extremely helpful.
- Use what aids you need – and find out what aids are out there that can help you.
- Don’t be embarrassed to tell people about your RA and to use aids. Amanda John has written some terrific stuff over the years about dealing with embarrassment – or sometimes failing to do so.
- Find ways to deal with people – This can be HARD! Most people will be curious, many will ask stupid questions and even more will offer completely useless advice about their aunt’s cousin’s daughter’s dog who had RA, ate some honey and got better. It won’t help you to give a snappy answer, although it might feel good at the time. (I learnt this the hard way.) At the same time, try to find a quick way of explaining RA – true friends will listen to you harp on about for hours; the more acquaintance-level ones are understandably easily bored!
- Read blogs about RA – but remember everyone’s experience is different. Just because Carla, author of the terrific Carla’s Corner, has had to have multiple ops, doesn’t mean you will. Just because Wren has days when she can’t turn a page without pain doesn’t mean you will. But when you want support and advice the RA blogging community is a great place to be!
- Pace yourself! This is so hard! Fatigue is a big part of RA for a lot of people. ‘Pushing through it’ and ‘carrying on regardless’ DOES NOT WORK! You need to pace yourself. I frequently refuse to arrange to do something Sunday if I’m already busy Saturday – or vice versa, and I am pretty strict about keeping my work hours to a standard working week.
- Consider writing a blog. As you can tell from some of my more moaning efforts, it’s cathartic! It also puts you at the heart of the great RA blogging community, allows you to find new friends who really understand and empathise with what you’re going through, and allows you to moan at the blog sometimes if you feel you’re overdoing complaining to your loved ones!
Tags: active, arthritis, consultant, diagnosis, doctor, GP, hospital, NHS, nurse, pain, patient, R.A., RA, reactive, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Well, what a dismal excuse for a blogging penguin I am! I completely forget that yesterday was day one of RA blog week. I guess this makes me a reactive blogger, or at least definitely not an active one, but now it’s day 2 and we’re discussing active versus reactive patients. Well, I’d like to think I’ve been an active patient from day 1 … that’s what I’d LIKE to think … and indeed I was already looking into RA and researching it before I was diagnosed, because the GP had suggested it as a possibility and I wanted to find out more. Pretty active, eh? Maybe too active? Maybe I was filling my head with RA concerns and worries, and RA symptoms that I might then convince myself I had?
I don’t think that was the case though – I think it’s important to know as much about the disease as possible, as soon as possible – although having said that, there’s so much info out there of, shall we say a less positive nature, that it can be pretty scary! It’s important to remember that most people with only mild RA, such as myself, have other things to do than write about the fact that they’re actually pretty OK most of the time and have nothing much to say! Consequently the really useful and important blogs out there, and other patient inputs, such as the Health Unlocked network, are written by patients with serious problems and severe RA.
Nevertheless, I was active from the start, partly because it was such a relief to have even a possible diagnosis, after years of odd symptoms that had doctors scratching their heads and trying to tell me I was depressed. (I know depression, I’ve lived with people with depression, I have friends with severe depression … I can recognise it, and I’ve never been depressed in my life.)
Having said all that, it’s hard to remain an active patient, I find, once you’re a number in the NHS health system. It’s hard to keep going and pushing and demanding what you’ve already been promised but aren’t getting, when you’re already feeling at a bit of a low ebb on the health front. It’s hard to put up with appointments not when you need them but when the hospital feel like fitting you in, and with nurses who clearly don’t care. Even harder when you read about the system being hailed as a paragon of virtue in the US. The IDEA of the NHS is fabulous – the ideal is spot on – the actual working is a bit of a disaster, sad to say. There are times when I go along to an appointment with no more active thought in my mind than, ‘Let’s get this over with for another six months to a year.’
Having said that, I think I’m still pretty active. I’m still prepared to fight with the GP for a steroid shot when I’m darned sure that’s what I need … and I’ve been proved right so far. And I’m still interested in the disease from a standing back and looking at the biology, being fascinated with the latest research and possible cures on the horizon point of view.
I think this is a rather different picture of the ‘active patient’ than the one painted by many of my US blogging friends. The US health system is as badly flawed as our I think, but in very different ways. IF you have got health cover and can maintain it, you’ve probably got a relationship with your rhemmy doctor and can see them when you need it (or within a few days not a few months). If you go in with a list the doc is impressed whereas here they just roll their eyes and groan. But fundamentally to my mind an active patient is one who takes control of their RA as much as possible, and not just on the purely medical, drug-related, front, but also doing what we can to control it and minimise impact – such as exercising whenever possible, eating sensibly etc.
Why haven’t I talked more about that? Because I’m a bit rubbish at it! I have been trying to get a 1.5 mile walk in at lunchtime though – sometimes it’s only 1 mile, sometimes it’s half a mile, but at least I’m trying! As to eating … let’s not go there in this post. It’s something I do rather too well!
Tags: aches, ankle, arthritis, flare, gardening, head, healthline, joint pain, knee, migraine, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), stress, tiredness, work
First of all thank you to Healthline for selecting my blog as one of the best arthritis blogs of 2016, and congrats to my online (and in Carla‘s case actually met in person) friends who also achieved one. Good to see so many old friends listed, as well as Carla, Wren, Cathy, Andrew, Amanda, Kelly and ‘Warm Socks’ also feature, and there are other blogs on there that I’m not familiar with and should take the time to get to know!
Now on to the body parts! My last post, a couple of weeks ago, stated that my knee was messing around again. Well I suspect there’s a little bit more permanent damage done each time I have a flare, and that knee has a lot of flares, but now it’s not not bad at all. Most of the time I’m having no problem – so long as I don’t walk into the printer table and bruise the precise spot that I flare in, as I did last week!
Then last weekend my ankle suddenly went ‘weird’. I can’t think of a better way to describe it. It hurt in the night and when i got up in the morning it was really painful. There was a big swelling but not really over the ankle, rather at the front of the leg above the foot, but absolutely no heat. I used my Physicool ice bandage anyway and that helped. It stayed painful and difficult to walk on for two or three days and then it was magically better. I really don’t know what that was about or if it was RA or not – I just hope it doesn’t come back.
As to the brain, such as it is, it has been subjected to a lot of migraines lately, and although I have tablets that, if I take them in time, get rid of the head pain, I’m still left feeling unwell. Work is insanely busy at the moment, which is contributing to stress which in turn is probably contributing to migraines – a bit of a vicious circle as if I have to take time off for migraines then work gets even more hectic!
However, yesterday, for the first time in a couple of weeks, I actually felt well, normal and full of energy – hence finally getting round to post! I’m not QUITE so full of energy today but not bad. I think getting outside in the sunshine made a big difference! We went for a nice long walk along the seafront at Cromer on Friday evening and then yesterday morning I did some gardening and washed my car with hubby (for which read watched and occasionally waved a shammy over the car while hubby did the hard work) – thank you dear!
I’m just hoping this energy boost will last me through the next hectic week – because next Saturday I’m going to need to work or I’ll never fit everything in!
Tags: aches, arthritis, doctor, exercise, flare, flare-up, GP, joint pain, knee, NHS, pain, physio, physiotherapy, prednisolone, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, steroids, stiffness
Well, yes, the knee flare was completely over … for a few days. I was just getting back into the swing of things, gradually building back up the length of my lunchtime walks from a few hundred yards to half a mile, to three-quarters of a mile … thinking I’d soon be back to the mile-and half … and then I woke up in the middle of last Friday night thinking ‘Ouch!’ I’m telling myself it’s not really flaring this time … I haven’t decided yet whether I’m lying to myself.
I certainly don’t want another dose of prednisolone just yet… if they’d even give me one, which I doubt. Having said I never have side effects, Carla happened to mention that sleeplessness and irritability are major side effects of pred, and guess what… I had a really sleepless and irritable week while I was on it – I just failed to attribute it to the pred. Now it all makes sense. And OMG, the night sweats!! I had no idea that was a side effect and I get hot flushes anyway so I just thought, ‘Coo, bad hot flushes, much worse than usual!’ I was slightly worried that this was more than hot flushes as the ‘sweats’ part was a whole lot more dramatic …again, I hadn’t realised this is a common side effect of the pred.
Now I’m still ALL for the steroids – the side effects, now I realise that’s what they were, were horrible, but the flare was much, much worse. The side effects I personally experienced were definitely the lesser of two evils and the pred let me carry on with my life and work, which I couldn’t have done without it. However, having said that, it does make the thought of another does quite unappealing if it can be avoided.
This time round the knee’s not hot, it’s not especially swollen and it’s not actually madly painful … it’s stiff but bendable, so really quite different to the definite flare I recently experienced.
Remember those knee-strengthening exercises I was doing, so that if I flared again I would have strength in the surrounding muscles and hopefully come out of it faster? No? Well you wouldn’t because I forgot to post about them. Unfortunately I have also forgotten to do them for the last few months, which is a pity really because I suspect that’s what the problem is now. As a horribly unfit person, having a bit over a week practically off my feet means I do need to build up those muscles etc. again and I think the minor pain and stiffness I’m experiencing is probably all about that.
So, spend goodness knows how long fighting for a doc appointment, to be told, if I’m lucky, that they’ll refer me to physio, which will take six weeks minimum, by which time I hope I’ll have recovered anyway, or just carry on and hope? I’m going for the latter at the moment. Wish me luck!
Tags: arthritis, flare, helpline, joint pain, nurse, prednisolone, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), steroids
Hurrah – I finished my week’s worth of prednisolone last night and I’m glad to say the knee is better! Oh … and the helpline phoned me back … on Monday … so five days after I phoned them. Yeah, like I said, they really are NOT for emergencies! I didn’t actually get to speak to her as she phoned on the home number even though I’d requested they try me at work. ‘If you didn’t manage to speak to the doctor or need some advice, do call us back.’ I did see the doctor and didn’t need advice, so I haven’t called back.
I’m still getting a bit of pain in that knee on and off, but then I usually do; I’ve got full ‘bendability’ in it and most of the time it’s not hurting, so I’m quite content … although I do feel as though I’ve just run a marathon, having been cheering on Andy Murray as I watched him (on the telly) fighting his way to the semifinals at Wimbledon!
Tags: aches, arthritis, blood test, cats, doctor, flare, flare-up, GP, hospital, joint pain, knee, medicine, methotrexate, MTX, NHS, nurse, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness
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 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 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 -‘
‘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.
‘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!
Tags: aches, arthritis, Brexit, flare, joint pain, knee pain, methotrexate, RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, stress, tiredness, work
I haven’t posted for a while because I haven’t really had much to post about – health-wise I’ve been good. I’ve been a bit stiff in the mornings for the last few days, but nothing to write home (or indeed blog) about. Then today I woke up stiff and tired, having had a migraine try to start in the night (successfully stopped with drugs!) I really couldn’t wake up for an hour or so this morning – not literally, I got up, had breakfast, went to work, but felt really brain fuggy. (Can’t blame the methotrexate as I take it Monday evenings and it’s Monday morning!)
Then when I got up to go to lunch, or rather tried to, I started to stand up and ended up collapsed back in my chair. No dramatic pain or anything – I was just so all-over stiff that joints weren’t doing what they were supposed to do! So after sitting a minute or two and flexing various bits (luckily on my own in the office so no one to see how weird I looked) I managed to get up and go for a short walk. I’ve been trying to walk about 1.5 miles at lunchtime but today I didn’t make 0.5 miles! The stiffness did mostly ware off but I was left with significant pain in the good ol’ left knee, where I usually get a flare if I’m going to have one. I’m really hoping I’m not!
Perhaps it’s the stress of ‘Brexit’ – the ‘Wow – where did that come from?’ title could also apply to that and it seems that partially to blame (apart from racists, stupid people and perhaps a handful of people with genuine concerns) may be the polls (as opposed to the Poles, which a lot of East Anglia would like to blame, I’m sad to say). The polls kept saying we’d vote to stay, so people decided that it wouldn’t matter if they had a ‘protest vote’. ‘Let’s vote leave, just so the government can see we’re annoyed with them – we’ll end up staying anyway.’ I’ve actually heard people say it, and then there’s this http://article in the Independent. No doubt people like this thought they were being terribly clever and original, but you get enough people doing the same thing (not that original after all guys) and guess what, we end up voting Leave.
Never mind the embarrassment of waggling stiff limbs about randomly in front of people, I feel embarrassed to be English at the moment! (I would say British but the Scots voted to stay!)
Hopefully the stiffness and knee pain will be a short-term issue. Alas, the same cannot be said for the state of Britain!
Tags: blood test, GP, GP surgery, injection, methotrexate, MTX, nurse, RA, rhematoid arthritis, rheumatology, sickness, surgery
At the behest of the hospital rheumy nurse, I’ve just been down to the surgery to have a blood test, since as I’m hopefully now getting more methotrexate into my system with the injections, they need to make sure that I’m not overdosing.
I got to the surgery, I went over to where the board hangs up where you collect your number and wait to be called for a blood test – no board. I headed back to the reception queue – the MASSIVE reception queue, the slow reception queue – in fact it wasn’t slow, it was immobile.
It took me 20 minutes to get to the front of the queue to say, ‘Where are the blood tests?’ only to be met by a blank look and, ‘Isn’t there a board …’
‘No, that’s why I’ve been standing in this queue for the last twenty minutes.’
‘Oh … well one young lady went home sick so perhaps they’re not doing them.’
‘It would have been helpful to put a notice up to save me queuing, and probably halve your queue at the same time!’
‘Oh, isn’t there a notice up? I’ll talk to someone about that right now.’
‘Don’t bother – they finish at 11 anyway and it’s 11 now.’
At least I needed to go anyway to get a printout of my new repeat prescription with the Metoject pen and then put that in to be reviewed by a doctor.
I sympathise with the sick phlebotomist; I sympathise with the rushed off their feet reception staff; where I draw the line is attempting to sympathise with blatant incompetence. How much effort would it have been for one of the receptionists (perhaps while she was getting coffee, as one of them did while I was queuing) to write a quick note saying, ‘No blood tests today due to staff sickness. Please try tomorrow but ring first.’ Not long I suggest. It also wouldn’t take long to inform all the receptionists (all three of them) that there are no blood tests, and yet clearly that hadn’t been done either.
It’s a good job I wasn’t going for a blood pressure check as my blood is boiling – at least it’s keeping me warm on a cold day!
Tags: arthritis, consultant, doctor, flare, hospital, methotrexate, MTX, NHS, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I’ve just had my April hospital appointment – well, it was supposed to be in April – then they moved it to June .. then they moved it to August … then they moved it to September … then they moved it to November… but this time it didn’t get cancelled. Right, I thought, I’ve seen no one at the rheumy department in 13 months, I’m going to make a LIST of things that I need to ask about, ’cause my memory’s shot. I know doctors hate lists but when you have to wait 13 months for an appointment you don’t want to forget anything, right? Right! Shame I forgot that I’d made the list then, and consequently forgot to ask about the dry mouth, although I think I covered everything else… except memory problems of course. I don’t think a rheumy clinic is going to be that interested in my forgetfulness anyway!
Everything else was more pain and stiffness in the hands and feet than previously, two nasty flares in my knees over the past year and a lump on my finger.
For the first two, my methotrexate has gone up to 20mg from 17.5mg. The nice boy (sorry, young man – I’m getting old, all the registrars look like children to me) was slightly horrified that I started off eight years ago on 5mg (or possibly 7.5mg) as they’re now much more aggressive and he said they’d never start anyone on less than 15mg so really 20mg is nothing. He also said if stomach upsets were a problem them can move me over to a self-injecting pen. I wasn’t too keen on that idea – I’ve only had two or three stomach upsets over the year that MIGHT have related to MTX and it’s possible that none of them did – I have a dodgy tummy anyway!
For the lump on the finger, he said since it was on my left middle finger and I’m left-handed it was probably just where I rested a pen. I said, ‘Who writes these days?! I almost never hold a pen! I type everything,’ to which he laughed, agreed and basically said, ‘Dunno’. It’s not painful and it’s not growing alarmingly so ‘dunno’ is fine for the moment!
The ridiculousness of the DAS score was brought home to me yet again. As the nice boy put it, ‘You might as well be amputated below the knee as far as that’s concerned’ and one of my main problems is feet! Daft! It also included a rating of how has the RA been THIS WEEK. Who gives a monkeys about this week – I haven’t seen anyway for 13 MONTHS! He took that on board too, bless him, and although I scored ‘low disease activity’ with four sore joints and pretty good thank you for this week, he accepted that my RA wasn’t under control if I’d had two bad flares this year; hence the MTX increase.
He also said if the appointments started slipping again, I should phone reception and point it out and they’d stop it happening – my faith in reception, on a score from 1 to 10 – zero. Not that I really think it’s their fault – they’re just the front line when it keeps happening and I phone up and say ‘Oy’ and they say, ‘Not our fault,’ which it’s not!
Anyway, I’ve got a nurse practitioner appointment in February – let’s see how much that gets moved – not that I need it in February – May would be more sensible, but I’m hesitant to cancel!!