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.

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Hopefully not the ‘new normal’ … and ‘now in other news …’

October 5, 2015 at 4:58 pm | Posted in rheumatoid arthritis (RA) | 7 Comments
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Well my knee is very definitely better – From being barely able to hobble across the room, one predniselone taper later and I’m almost back to normal – I’m back at work, doing my lunch-time walks again, carrying on as normal … almost. The things is I’m getting twinges in that knee after walks, and I haven’t dared try exercise other than walking yet, and it’s generally more painful and tender than it was – I still have huge tracts of time when it doesn’t hurt at all, I’m delighted to say, but it probably hurts more and more often than it did pre-flare. I don’t know yet whether that’s because things are still settling down after the flare – it’s been nearly two weeks now which is long for me but not long in the scheme of RA things – or whether there’s been some damage done to the knee and this is the way it’s going to be from now on.

Here’s hoping it’s the former!

As to non-RA related stuff, I’m very sad to have to say that ‘Enormous Cat’ died a few weeks ago. We miss him enormously! Well, Hubby and I do. Tiny Cat 2 isn’t the slightest bit bothered! ‘All the more crunchies for me’ I think is her attitude.

On the brighter side, we had a fabulous holiday to Whitby, where we were lucky enough to get a room upgrade in the very nice hotel and had a generally lovely, relaxing time, and, in spite of seriously steep hills, the RA pretty much behaved itself. I did wimp out of a really steep and windy trip up to see a waterfall … but it wasn’t as though we’d planned that anyway. We just stopped in a village cafe for a coffee, got chatting to a couple and their very friendly (and perpetually hungry dog) and he said ‘Have you been up to see it yet?’ And we said ‘See what’ and it turned out there was a fairly famous waterfall there. I did manage to see the wonderful Whitby Abbey, which I had been really wanting to visit for years.

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The Yorkshire Moors were magnificent, and yes, we did have some good weather too, in spite of the Abbey photo above with the foreboding clouds!

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And Castle Howard was deeply impressive … although the only bit I really liked was the Arts & Crafts Chapel – amazing! (The ‘new wing’, built in 17-something, was also nice, but the neoclassic earlier part of the house I personally found rather cold, although Hubby loved it!)

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All in all a very fine holiday – but could have done with another week!

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!

The good, the bad and the mildly irritating

June 25, 2010 at 3:53 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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I was on my way to my six-monthly (ish) hospital appointment this morning, and feeling distinctly glum, most definitely not wanting to go, when the news came on the radio and cheered me up slightly. Some excellent news for UK RA patients generally, I’m delighted to say: NICE has reversed its ludicrous policy of refusing to treat patients who failed on one anti-TNF with another. Anti-TNFs are not all the same, so saying that because a patient fails on one they won’t benefit from a different one is patently absurd, but that’s exactly what NICE, the patently absurd National Institute for ‘Clinical Excellence’ had decided to do. From later this year though, patients who fail on one anti-TNF will be allowed another go. (I think only one more go, but that’s better than none!)

Hopefully I shall never need to worry about this from a personal point of view as I seem to be doing well on the methotrexate. Inevitably the three-week flare I’ve just come through has now passed (just in time for the hospital appointment, of course) and didn’t show up in the bloods, so it’s not being taken at all seriously. Still, on the bright side it DOES seem to be over, so next time I shall just have to gird my loins and nag the hospital while I’m HAVING a flare, if only so they get to see it!

So that was the mildly irritating.

The bad is physio – not my physio of course; she’s still lovely. But apparently, ‘In order to be in line with private practice’ they are going to restrict all patients to a maximum of six appointments before a re-referral is required. It’s a very confusing system which I’ll explain in another post, but I can probably get re-referred. However, if I normally have physio twice monthly, I’ll have to get rereferred every three months and then wait around five weeks for an appointment, where presumably I won’t be guaranteed to see my lovely physio and will be reassessed each time, even though after a couple of years I think between the two of us we have a pretty good idea of what works! (Anyway, more about this whinge later!) The bright side is that I have at least had her for around two years, and when I started seeing her I thought then that they’d kick me out after six appointments, so I suppose I can’t complain. (Oh wait – yes I can …)

Ten things not to do when you’re having a flare

June 10, 2010 at 4:29 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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1. Say “Of course I can carry the tray!”
2. Run downstairs wearing only socks. (It feels like you’re walking on marbles.)
3. Say, “No – don’t you come up. I’ll bring the dress down for you to look at.” (’cause then you have to take the dress back up to keep it away from the cats … and then come back down.)
4. Tell yourself a browse around the local garden centre won’t hurt a bit.
5. Push a big, heavy door open with the flat of your hand.
6. Assume you can overtake the little old lady with two sticks walking in front of you along the street.
7. Get depressed when you can’t overtake the little old lady with two sticks walking in front of you along the street.
8. Swing your arm up without thinking to get something off a top shelf.

Actually I think that’s all the dumb things I’ve done over the last two days pertaining to my flare, but I think eight is enough – don’t you?

Phew – coming out of a flare!

February 19, 2010 at 2:28 pm | Posted in rheumatoid arthritis (RA) | 3 Comments
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At last I’m on my way out of a rather prolonged flare! While I’m sure that my consultant would be pleased to point out that it wasn’t much of a flare – I mean I didn’t even need a steroid shot – it was quite enough of one for me, thank you!

I had a very good birthday this year, in spite of being in the middle of the flare. Hubby had the day off too, which he doesn’t often manage, or at least not to coincide with mine, and we had a leisurely morning in Norwich including a trip to the Castle Museum and lunch at ‘The Waffle House’. Because of the whole flare thing we decided to come straight after an early lunch and I spent the afternoon lounging around in bed reading some of the many great books (mostly embroidery-related) that I’d got for presents, before heading off to Mum’s for a yummy meal in the evening. While I’d have liked to have been able to DO more on my birthday, it was still a jolly good day!

I suppose at least I’m finally learning to pace myself. Talking of which, the OT is NOT in my good books at the moment. I drove for forty minutes in stinking traffic through rain and hail and sleet and snow and fog (and semi-darkness for part of it) to get to my OT appointment only to be told, ‘She’s gone home’. Luckily for both of us I suppose a) I like her and b) I know she wouldn’t do that deliberately and c) she phoned and apologised profusely this morning.

I told her she could make it up to me by fitting me in between physio and a hair appointment next week, which she is doing. I shall come away feeling thoroughly pampered after all that: not quite a luxury spa treatment, and believe me, our local hospital doesn’t bear much resemblance to a luxury spa, but the closest I’m likely to get to one for a while!

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