Two steps forward, one step back…

July 12, 2016 at 2:28 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 10 Comments
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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!

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!

Bloody Surgery Again!

April 28, 2016 at 2:35 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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That’s doctor’s surgery, not a need to have surgery, I’m very glad to say!

I put in a repeat prescription two days ago, went in to collect it today, only to be told they didn’t have it in at the chemist. (The usual route is for me to deliver my requirements to the surgery, and they pass it on to the chemist, who is thankfully very nearby, for collection in 48 hours.)

So I went to the surgery and said, ‘I put in a prescription two days ago but they don’t have it at the chemist.’

‘Oh well, it can be up to 48 hours.’

‘It’s been more than 48 hours.’

‘Well it can be up to two days, if you put it in on Monday morning, it might not come out until later today.’

‘Why say 48 hours then? It’s been longer than 48 hours. Please could check on the system and see if it’s been done.’

Rather unwillingly she checked the system and said, ‘Yes, we issued it on the 19th,’ and sat back with a satisfied smile. ‘We issued methotrexate, folic acid, hydr… hy… hydrer … can’t pronounce it but we issued all that stuff.’

Deeeeeep breath … ‘OK, well they don’t have it at the chemist. What now?’

‘Can you go over to the chemist and check?’

Really deeeeeeeeeeeeeeeeep breath. ‘As I said, I’ve just come from the chemist.’

‘Well could you check again. It might be there.’

Well, it’s only up the road, not like I have anything better to do … oh wait, yes I do … never mind. Back to the chemist.

‘Could you check on the shelf please – the surgery say they issued it on the 19th. It’s happened before that it wasn’t on the database but it was on the shelf.’

So very grudgingly the pharmacy assistant checked the shelf. It wasn’t there. ‘Well it wouldn’t be,’ she said, ‘ it wasn’t on the database.’ I’m getting really tired of repeating myself at this point but I said, ‘It’s happened before. Would you mind ringing the surgery and telling them, or shall I carry on being a yo-yo and go back and tell them again?’

‘Would you mind going over? It’ll take us ages to get through to them!’ Well I had to concede that was a fair point so I went back over. By this time I had lost any vestige of patience i had. Funny, my mum thinks I’m very patient… but that’s just an indication of her extreme impatience!

I went up to the same receptionist, glared my most menacing penguin glare and said, ‘I’m back.’

‘Oh … it’s not there then?’

‘Funnily enough, no.’

‘But we issued it on the 19th.’

‘You said.’ More glaring.

‘Well have you had the methotrexate?’

‘No, of course not. I haven’t had any of it. That’s what I’m saying. It’s not there.’

‘Well …I can’t understand why they keep disappearing …’ HA! So it’s not just me this is happening to then, marvelous! Good old surgery ****’s up again! ‘Well, I’ll print it out right now.’

‘I’m going to run out of my medications by tomorrow night – I can’t wait 2 working days.’

‘Oh no, we’ll get a doctor to sign it and send it over this afternoon.’

So I’m waiting to see if they get it right this time – good job I have spare methotrexate as it takes the pharmacy three days to order it in!

 

Hospital appointment – only 7 months late

November 20, 2015 at 9:27 am | Posted in rheumatoid arthritis, rheumatoid arthritis (RA) | 13 Comments
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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!!

Knee flare

September 25, 2015 at 8:30 am | Posted in rheumatoid arthritis (RA) | 3 Comments
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Poor neglected blog! It’s been neglected till now because RA has been under control and I’ve not had much to say, and now it’s going to be brief post because I’m typing on the iPad mini, which ain’t easy when you’re  used to touch typing!

So so why not use the PC? Because I’m having a great big flare in my left knee and can’t comfortably get my leg under the desk! This also means I can’t work of course! Very frustrating! It started Monday night, I had Tuesday off work and went back Wednesday when it was quite a bit better. Probably a mistake as yesterday (Thursday) it was a whole heap worse.

i phoned the doc and spoke to, I think, a locum.

‘What can I do for you?’

‘I’m having an RA flare in my knee and it’s about the size of a football.’

‘Oh?’ <slightly sceptical voice>

<Pause>

‘I do have RA! Had it about eight years!’

<pause>

‘oh, right, yes, of course …’

Oh good, he’s finally read some notes!

‘Well’ says the doc, ‘What do you normally do for that?’

‘You give me a prednisolone taper.’

‘Ah, when did you last have one?’

The honest response would have been ‘Duh, I dunno!’ I’m just hopeless with dates! I know it was a while back so I said ‘Maybe a year ago?’ For all I know really it was 2 or 3!

‘i can’t find it on the system.’

‘good grief! I’ve hardly been in the surgery this year! There can’t be that many visits to look through!’

‘Oh, I’m not in that bit. I’m looking at medication and all your monthly repeats are coming up of course.’

I bit my tongue and didn’t say ‘Well go into that bit then.’ I didn’t want to antagonise a man who was (hopefully) going to give me drugs!

‘Hm, I can’t find it. Do you normally start the taper with 4 or 6 tablets?’

durr… I dunno! ‘Four? … Maybe? … I think … Not sure.’

At this point I expected something on the lines of ‘you’d better come in and I’ll look at it and make an informed medical decision’. Instead I got, ‘Well let’s try four. I’ll send the scrip over to the pharmacy for you.’

I have to say he was very pleasant and I’ve shortened the nice chat we had drastically due to iPad typing, but still unsure whether to be grateful to doc for listening to and believing (eventually) the patient, or horrified  at the laissez faire attitude! As it saved me a very uncomfortable trip to the surgery I think I’ll opt for gratitude! Now I’m just sitting with my leg up and hoping the steroids do the trick!

I’m missing an art exhibition I really wanted to see, a workshop on identifying dragonflies and possibly a painting class, over the coming weekend, but I’m catching up on lots of reading and doing some crochet, which I’ve not done for ages, so there are good things ….kinda!

You know you’re stupidly busy when …

June 9, 2015 at 11:04 am | Posted in arthrits, Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
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… the only time you can arrange to meet with your mum to give her some important advice about embroidery is at the doctor’s surgery!

In fairness, it’s partly because she’s stupidly busy too and away for the rest of this week!

We both needed a blood test, and we knew there’d be a bit of a wait, so we met, appropriately enough, in the waiting room! You may remember from my last post, things hadn’t exactly gone according to plan with the blood test attempt, but this time it couldn’t have gone better! When I got there, mum was actually having her test, having arrived a little while before me. It couldn’t have worked out better. As I sat down, she came out from the phlebotomist, we had just enough time to go through her needlework problem and I got called in!

I only waited about ten minutes to be seen and I needed that ten minutes to sort mum out!

Hurrah for the surgery – and I don’t often say that! When things run well, they run really well … a pity they don’t run well a little more consistently!

Tooth aches and irritations

May 31, 2015 at 3:20 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis (RA) | 10 Comments
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Well, the last few weeks have certainly been interesting … in the Chinese curse kind of a way, although there have been some great highlights including a couple of painting classes and a textile workshop. Mainly though, things have been rather dominated by toothache … and irritation!

I had a niggley toothache, not bad, just on and off, but with a lot of sensitivity to hot and cold as well, so eventually I bit the bullet (ouch) and went to the dentist – who ummed and erred a bit and said that hopefully it just needed a bit of filing down, but if it didn’t it ‘could be nasty’. Not the words you want to hear from a dentist really. He said if the filing down didn’t work, to come back the next day … it didn’t; I did.

Now bear in mind we’re extremely busy at work at the moment and the dentist is in a village up the road and it takes around 20 mins to get there from work. So a visit takes at least an hour all told – and I had to do two in two days – frustrating! On the second visit he did the briefest of examinations and said, ‘Reckon it’s an abscess – have some antibiotics’ … so I did … but I was cursing because I thought, ‘Why didn’t he just give them to me yesterday, and save me an hour?!’

I got back to work, opened the packet of Amoxicillin, glanced at the leaflet inside and it said, ‘If you’re taking any of these medications, talk to your doctor first’ and one of them was methotrexate!

Muttering under my breath I picked up the phone and phoned the dentist – and had to waste more time trying, and failing, to explain what the problem was to the receptionist. Understandably the dentist wasn’t available immediately – no doubt he had his hands in someone’s mouth – so I waited for him to call back … and waited … and waited …

I knew there was absolutely no chance of getting hold of a doctor that day and, as the tooth was getting worse, I didn’t want to wait until the next day and then I had a brainwave … or perhaps a brain storm (in the old-fashioned sense!) I thought, ‘Hang on – isn’t that 111 number supposed to be the NHS non-emergency number – they can answer queries, I’ll ask them.’ I took a brief look at the website and it said ‘111 is the NHS non-emergency number. It’s fast, easy and free.’ Sounds good, I thought, so I rang it. It was answered very quickly and as I was talking to the pleasant lady who answered I noticed on the same page as ‘non-emergency number’ it said, ‘You should use the NHS 111 service if you urgently need medical help or advice but it’s not a life-threatening situation.’ I felt a bit embarrassed because clearly it wasn’t that urgent, and even more embarrassed when I explained the issue and she said, ‘What symptoms are you having?’ And I said, ‘None – I haven’t even started taking it yet!’ She was lovely though and put me through to ‘a clinician’.

Now I’d done a bit of a checking up on the internet first and the issue is that Amoxicillin can cause the methotrexate not to be properly excreted from the body, resulting in a potential build-up of toxins from the methotrexate. I could find no indication of a) how much MTX you’d need to be on to have a problem b) how much Amoxicillin you might need to have a problem or long you’d have to be on it for or c) How long the effects might last, since I’d had Amoxicillin only about 3 weeks ago for the sinus infection that was part of the reason we failed to get to Barcelona!

The clinician came on the phone. He clearly had not the foggiest idea why it would matter that I was taking MTX and Amoxicillin, so I briefly explained as above. ‘Well,’ he said, ‘you seem to know the answer then.’ Helpful … not! So I pointed out that no, I didn’t know the answer, since the question was having been prescribed it, should I or shouldn’t I take it? What was the level of risk? And so on …

‘Oh … er … um … well’ he said … and so on for a while … ‘I think I wouldn’t risk it really. You need to talk to your dentist.’ I explained I was trying to do that and would continue to do so! I felt very strongly that he really didn’t have the foggiest notion and was just covering his back, as if he had said, ‘Oh I think it’s fine’ and then I died of toxic MTX build-up, that could have been his career down the tubes … and I suspect it was a career that had barely got off the ground so far anyway.

So I called the dentist back – receptionist again – and to look like I wasn’t nagging I said I had a bit more information that I’d previously forgotten to mention (which was true) and explained that I’d also had Amoxicillin in April and wasn’t sure if it stayed in the system. Given that Mr Dentist phoned me back almost immediately this time, I can’t help wondering if she’d completely forgotten to pass on the message the previous time.

‘Oh,’ said Mr Dentist, ‘I’ve got some different information from you … as I understand it, the Amoxicillin can cause a build-up of methotrexate in the system.’ I said yes, that was the information I had too and he said that that wasn’t the message he’d been given from the receptionist. I bit my tongue, swallowed down the sarcy comment on the tip of it and said sweetly, ‘Oh dear – I obviously didn’t explain it very well then,’ which in fairness was probably true!

‘Well,’ he said, ‘You’re a sensible sort of girl. I’m sure you can monitor things and if there’s any problem, see your GP.’ I pointed out that I had no idea what sort of problems this toxicity build-up might cause. ‘Hmm, neither have I,’ said he, ‘you’d have to ask a doctor!’

So – I’ve now lost count of how much time I’ve wasted and really I don’t feel any nearer to knowing if I should be taking the damn stuff or not – but he had looked it up on the drug interactions database and said it didn’t appear to be a major problem, so I started to take it anyway.

The next day I decided that perhaps I should ask the doctor – after all, it’s only a phone-call. With the new surgery system you have to have a phone call first from the doctor and then they see you if they feel they need to, and I was sure they wouldn’t need to for a simple question.

Unfortunately I forgot to call until about 10 am so most of the appointments had gone. I explained the situation to the receptionist and said was there any chance of a call back and she said she’d have to ask someone. Now he was either new or a locum, not sure which, and for reasons best known to himself he decided he’d see me! Aaaaaaaaaaaaaargh, more time wasted!

So I went for my appointment and the first thing the pompous little man said was, ‘I don’t really believe in prescribing antibiotics anyway, but as you’ve been prescribed them … I mean normally the body can manage to heal itself without them. Of course there are some circumstances where one might have to, but it’s quite rare …’

I replied, ‘On the one hand, tooth abscess, notoriously difficult to get rid of; on the other hand, immunosuppressed; don’t you think this might be one of those rare situations?’

He looked quite shocked to have his little lecture so rudely interrupted and, pomposity temporarily punctured, he replied, ‘Oh …er … well … probably in this instance, yes.’

So … back to square one – do I or don’t I take the dratted antibiotics? And the answer was … YES! Take them. I have to say though that even the doctor didn’t seem absolutely 100% sure! He did check the database again and he did say, ‘It’s not even a red warning’ and I had seen on the internet that the evidence for this toxic build-up was quite slight and I, I think, not in humans, so I was somewhat reassured in the end.

I’m glad to say that the tooth does seem to be clearing up, and I’ve not yet keeled over from any toxic build-up!

Hubby did point out afterwards that I could have probably saved a lot of time and effort by asking the pharmacist – wish I’d thought of that! Must try and remember for next time. Another sensible option might have been to ring the hospital rheumatology helpline – but I haven’t used it since my very poor experiences years and years ago and I don’t actually know the number anymore. Next hospital visit, I must get it!

Of course, all this makes it all the more important to go for my monthly methotrexate blood test … and therein (of course) lies another tale … for a later post!

To flare or not to flare – that is the question

March 17, 2015 at 3:01 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 9 Comments
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I woke up yesterday morning with really bad pain in my hip/lower back, but by lunchtime it had passed off, so I had a lunchtime walk yesterday as usual, and very pleasant it was too, until about half-way round, when I got a very sharp pain in the side of my foot, just behind the little toe. (Same leg as the hip pain.) By the time I got back to work the pain was coming in short, sharp bursts lasting up to about 10 seconds and then was fine in between … but in between wasn’t very long! It was happening at least twice a minute. I took paracetamol and, three hours later, ibuprofen, but to no avail. We had to go shopping that night and I limped around the supermarket and then asked hubby to drive home as I was in too much pain. It wasn’t the worst pain I’d ever experienced but it was BAD. My foot just in that area was bright red and swollen, so that sounds like RA, but the odd coming and going of it doesn’t seem quite right. I THINK it was RA and I’m just a weird patient!

Anyway, of course being Monday last night was m-m-m-methotrexate night. I went to bed still in a LOT of pain, and woke up in the middle of the night thinking, ‘OOOH, my foot hurts’ and then again, some time later in the middle of the night, I think around 3:30, thinking ‘OOOH, my foot DOESN’T HURT!’ And it hasn’t hurt since. I have no idea what’s going on or why, but MAYBE it was lucky that that happened on a Monday and the methotrexate kicked in. I don’t think it’s supposed to work like that though, is it? It’s supposed to be a slow build-up, not a week by week thing. Perhaps it was just a short, sharp flare-ette and just finished then. Perhaps it wasn’t RA at all. They mystery of what is and isn’t RA is certainly … mysterious …

That reminds me of the time a few weeks ago when I was getting sharp pains and bad headaches that felt like they were on the outside of my skull. Not the first time this has happened, you may recall. Oh dear, I thought, I hope this isn’t giant cell arteritis – I think it’s that sort of symptom … and then I realised I was wearing a hair-slide that was being pushed into my head by my transcription headphones! Much relieved that I worked this out by myself and didn’t bother the poor, overworked GP with it!

Anyway, the good news is that the answer seems to be ‘not to flare’ at the moment, but I’m having a day off walks this lunchtime just in case it happens again!

We’re off to see the Wizard … or at least to Future of Health Conference 2014

November 20, 2014 at 4:15 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 1 Comment
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I’m on my way to the bright lights, big city of London for the Future of Health Conference 2014. And if Simon Stevens can pull off his Five-Year Forward View then he will indeed be a Wizard – and not just a Wizard of Oz.

The plan has a lot of good things. One is a focus on prevention – something really fairly new to the NHS if they’re going to take it seriously, not just say ‘Do you smoke? Do you want to stop?’ when you go for your flu jab at the GP, so that they can claim their smoking prevention bonus!

Then there’s a focus on patients gaining control of their own care. Sounds great – but what does it actually mean? Maybe I’ll find out on the train down as this is my planned reading matter.

Then they want to break down barriers in the NHS e.g. between GPs and hospitals, doctors and social services etc. Well I don’t think that’s anything new on the wish list front – it remains to be seen whether they can actually change deeply embedded cultures to get it done!

GPs are going to be given the option to combine with other specialists, e.g. mental health and social care, to form ‘Multispecialty Community Providers’. Hang on – isn’t this just the old consortium idea under a fancy new name? Sprinkle a little magic name dust over an old idea and see if it blooms into a beautiful new service.

There’s other stuff too – if you’re interested go and read my planned reading material link above – but those are the bits that resonate with me.

This tweet by the King’s Fund, an independent charity focussing on improving UK healthcare, focuses on where the money’s going to come from – always  a good question in the NHS, and even more so in this economic climate!

Part of the new plan involves ‘managing demand’ and while I’m not sure  I agree with everything in the link below, there are some good points, and some points I haven’t quite got my head around yet.

I can’t help thinking managing resources (not just human resources) and managing burnout should also be high on the agenda.

This is certainly not just an American issue. It’s something we patients see all the time. It’s also not just in doctors. Some of my previous posts about nurse practitioners and even physiotherapists would suggest that it’s ‘health care professional burnout’ that needs to be a concern, and is ladling on more models and targets etc. actually going to help with this? I doubt it.

And this from the King’s Fund again:

It’s suggesting that the NHS has too many doctors and not enough support staff including nurses, considering that the new plans focus on integrating more and using nurses for EVEN MORE stuff. I’m ambivalent about whether that’s such a great idea anyway, but if it’s going to happen then how could the NHS have predicted and trained the right number of doctors/nurses given that a) some bright spark comes in and shakes up the NHS every 3-4 years so no one can plan anything anyway and b) medical schools aren’t going to stop training doctors because they’re funded on how many doctors they train …

It makes my brain hurt! I’m so glad I’m not Simon Stevens. Good luck Mr Wizz. See you on Friday at the Future of Health Conference. 

 

 

Cutting back on the tabs!

June 13, 2014 at 10:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 9 Comments
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You may have noticed I haven’t actually said anything much about my RA for a while … well that’s because it’s not really affecting me in a big way, and hasn’t been for a while. And yes – I do appreciate how bloomin’ lucky I am!

I saw my consultant the other day and for once we were in agreement – things are going well both from his point of view (bloods and 2-second examination) and mine (how I actually feel). These two things rarely combine but this time they did, and what’s more, six months ago when I saw the nurse things were going well too, so we’ve made the decision to cut back on the tablets.

I must say I felt awfully brave doing that … still do actually, it’s scary how dependent one gets on the comfort of knowing that if you keep taking the tablets things are mostly OK. It’s only the anti-inflammatories that I’m cutting back on at the moment, and the idea is that if that goes OK I’ll step down my methotrexate next time I see him. In fact, I’ve cut out the anti-inflammatories altogether for five days so far and things are going well. Apart from the odd twinges in my bad knee and occasional mild stiffness and achiness if I wake up after a cold night, I’ve had very little indication that they were making any difference. Unlike the methotraxate, there was no build-up with the anti-inflams I was taking, so the good news is that I can cut them out for the moment but if I have a flare, or just a bad, achy day, I can take one whenever I need to.

Of course we’ve had five days of glorious sunshine and DRYNESS – which I’m convinced makes a difference, so we’ll have to wait and see how things go when that stops – and given it’s the weekend that will probably stop tomorrow! Watch this space! I’m really hopeful though that things will carry on going well and I can reduce the methotrexate in six months’ time!

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