Tags: cumulative, cumulative effect, Dr Chris Moore, fibromyalgia, pain, paracetamol, Rheumatoid arthritis, tylanol
I woke up this morning and said to hubby, ‘Yay! Good news! I didn’t need to take any paracetamol last night and I don’t need them this morning either! Isn’t that great.’ He agreed it was great. (He’s nice like that.) 11 am today and I was STILL feeling fine – hurrah, I thought, this dratted flare is finally over. Then, out of the blue, bam, agonising stabbing pains in my ankle. Then the light dawned – oh dear – I bet paracetamol has a cumulative effect.
I’m a bit of an idiot really. I KNEW it had a cumulative effect from the point of view of overdosing, and if has that then it’s likely to have a cumulative effect for pain too I suppose! Feeling a bit silly now!
Anyway, there’s a fascinating article here by Dr Chris More, a fibromyalgia sufferer her/himself (doesn’t specify gender on site, so far as I can see!) Actually, I’ve had a wee browse around the site and I think it’s a great resource for anyone with pain issues, not just fibromyalgia sufferers, so I will be adding it to my blogroll too!
Tags: arthritis, doctor, folic acid, GP, joint pain, medicine, NHS, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatology
I’m Pollyanna right? I can do this glad-game thing! OK, I’m glad I’ve had to go to the surgery and the chemist three times this week because it’s given me an opportunity to enjoy more of the beautiful spring weather (in between the showers). I’m glad the doctor completely screwed up my last prescription in three different ways, because otherwise I wouldn’t have had that lovely experience I’m so glad about. I’m glad that I had to go in to the surgery reception tonight and point out that even after a conversation with the doctor yesterday, he had not sorted out the correct repeat date for my folic acid, because if I hadn’t, I wouldn’t have had that amusing conversation with the receptionist about kicking her cat.
Hmm … doesn’t sound too convincing, does it, really? Well I am at least trying – but it’s very trying, especially as I’m still at the tail end of a flare.
Here’s what happened – in brief – I hope, although I do have a tendency to waffle on, as you may have noticed.
I put in my repeat prescription as normal, picked it up Monday, got it home and realised that my folic acid was missing. As my folic acid was the only thing I’d run out of (I just ordered all the RA drugs at once to save another visit to the chemist) I was a bit peeved. I contacted the surgery reception and had a conversation something like this:
Polly: I’ve collected by repeat scrip but it doesn’t include my folic acid.
Receptionist: Ah … let me look it up. Oh I see, that’s because you’re not due any until March.
Polly: Yes I am, I’ve run out.
Receptionist: Oh no, you can’t have. You see it was issued last month, and you take it three times, on Wednesday, Friday and Sunday.
Receptionist: So that’s three times a week
Receptionist: And they issue you twelve, so …
Polly: Yeeeeeeees …
Receptionist: <lightbulb going on> Oh! That is actually a month’s worth, isn’t it?
Receptionst: Oh … in that case it looks like the doctor’s made a mistake.
Well, to cut a long story short(ish) that wasn’t the only mistake he’d made, so although I was able to have my folic acid rushed through and pick it up in time for me to take it on Wednesday, I then realised there were two other things (non RA-related) also missing from my prescription! I checked the repeat prescription paperwork and it quite clearly said that those things were due now … and that the next batch of folic acid was due in … April.
So I phoned again and asked for a doctor to call me back to discuss this, which he duly did! I had a very pleasant conversation with him, while being driven to my mum’s house by a colleague in order to turn off mum’s faulty burglar alarm … but that’s a whole nuther story … and, after an entire repeat of the conversation with the receptionist – ‘You take it three times a week … we issue twelve … OH!’ etc. he assured me he’d change it on the system and also put through a prescription for the other two things.
Tonight I went to pick them up, feeling happy, relaxed and full of the joys of spring. I went into the chemist and sure enough they did have my other two items ready. Hurrah. Then, foolishly perhaps, I checked the paperwork. Instead of saying ‘Folic Acid – due 26 March 2014’ in nice, neat print, it said ‘Folic Acid’ and then 26 March 2014 scribbled in in biro over the printed ’26 April 2014’! All very well except that a) I could do that myself, and indeed when I next put in a repeat request the doctor (probably not the same one) would assume I HAD done it myself and just not issue me any, just like the last two months and b) what happens when I want some more in May or June or whenever and the issue date is for two months down the line again?
So I went in and, having honestly been really nice and polite to the receptionist the first time (and not mentioning breathtaking incompetence at all), and really nice and polite to the doctor (in spite of mum’s alarm going off in our ears in the middle of the conversation), this time I blew my top, flipped my lid and generally had a big squawk! The receptionist was lovely – didn’t apologise exactly, they never do I’ve noticed, and neither do the docs, probably terrified if they say sorry I’ll sue them for something, but was very helpful. She put in a note for the doctor saying it did need to be changed, please, and suggested I call tomorrow to find out if it’s actually been done. (She obviously has as much faith in the system as I do!) When I said that I was sick to death of going in there and had had to come in three times in the last three days she said, ‘You should try working here. I love my cat, but honest to God I go home each night and want to kick it!’ Don’t tell Enormous Cat, but this evening I knew how she felt!
It’s been a week of ups and downs – the ups were two days off, Monday and Friday, for textile/embroidery related things which were great fun – the downs were a ‘flarette’ and … nope, that’s it, just the flarette really! It meant that on Friday, when I visited a textile fair with some friends, I was hobbling around with a stick and slowing people down .. and climbing in and out of the ancient, slightly decrepit minibus, which looked like it had recently been ‘gone over’ by a bunch of worse-for-wear rugby players, was really ‘interesting’! Still, if it hadn’t been for the minibus I wouldn’t have got there at all, so thank you driver! In spite of the flare I managed to have a nice day – and a very sociable one – not just with the friends I travelled down with, but with everyone there. The small size of the event meant that everyone was chatty, which was really nice, especially in the canteen where I spent a rather large amount of time, since I couldn’t walk well!
The fair was in a school, meaning that in the canteen you either sat on the end of a bench or had to climb in – which I couldn’t do. At one point I limped up to the end of a table where there was a lady sitting the other side already, sat down and accidentally bashed her slightly with my stick. When I apologised she just smiled and said ‘which leg is it?’ ‘Left’ I said. ‘Oh good,’ she said, ‘it’s my left too, so if we sit diagonally we should be fine!’ It turned out she was an autoimmune arthritis sufferer too – and a lovely lady, although sadly in a worse state than me, making it hard for her to actually do all the crafts she loved. We had a good conversation though – as I did with several other pleasant ladies I shall probably never see again!
She said she’d decided to leave her stick in the car, because she didn’t want to become too dependent on it. I only use mine occasionally, when flaring, because bits of me give way and then I can’t walk at all but I can hobble if I’ve got my stick; but it raised an interesting point, I thought. Can one become too dependent on a stick? Maybe. I know that when things were getting better yesterday (hurrah) I felt safer with my stick, just in case – but I did I really need it? Maybe not. Does it matter? Well, probably not if I was happy to just carry it and not use it, but that looks weird and then all the old folk in town give you the evil eye, a look that says, ‘Ha, suppose you’re one of them “benefit cheats” I was reading about in The Mail.’ I know I shouldn’t care what they think … but it’s hard not to. ‘Sticks and stones may break my bones’ but a hard stare from a pensioner cannot hurt me!*
Perhaps the answer is one of those fold-away canes – but the problem is they’re not exactly feather-light and my handbag is quite heavy enough as it is!
Answers on a postcard please …
* I have nothing against pensioners, and chances are they have nothing against me and it’s all in my head … but we do have a large percentage of pensioners in our town, which is why they are statistically most likely to be the ones giving me ‘the look’!
Tags: appointment, blood test, disaster, NHS, Rheumatoid arthritis, rheumatology, rheumy nurse, walk-in
Here’s the thing. You may remember that I said back in November that the hospital were happy for us to have 3-monthly blood-tests for methotrexate? Well it turns out that I’d misunderstood. It appears that the hospital are happy for us to have monthly blood tests but only see the surgery rheumy nurse three-monthly. They are NOT happy to have methotrexate patients checked only three-monthly.
Well that would mean attending the walk-in blood-test appointments, and if you reading my most recent post on this you’ll know they’re a joke – or they would be a joke if they weren’t a tragedy. Today I attended my three-monthly test and had a wee chat to my lovely rheumy nurse about the monthly tests.
They seem to have put the blood tests on a Wednesday now, although my last notification was for a Thursday – perhaps it’s both now. If so, it’s not helping. The nurse freely admitted that the system was a disaster and I witnessed the rugby scrum as the board with the little numbers stuck to it was brought out by the receptionist.
Walking-sticks flying, old people beat others out of the way as they charged toward the board, knocking down the poor receptionist who was trying to attach it the wall. An ambulance had to be called to cart off the trampled people when the scrum was over.
OK, I exaggerated just a tad there, but not as much as you’d think!
In spite of the fact that there’s a notice up saying ‘Unless you have a really important personal reason or work, please don’t come in before 9:30 for the blood test’ I don’t think one person in the scrum was under 80. Now the thing is, from experience they all know that there’s going to be a 1.5-2 hour wait, and they have lives too – why on earth should they wait 2 hours just because they don’t have work – so I don’t blame anyone, of any age for coming in at 8:15 plus rather than 9:30 – but the whole thing is just a failure … and surprise surprise, staff are going off sick with stress – so would I be, I think, under the circumstances!
The only light at the end of the tunnel maybe, maybe, maybe, the hospital will see that people are not ‘complying’ with their monthly tests and then tell the surgery they have to reinstate tests with the rheumy nurse each month – I don’t suppose that will happen though. They’ll probably just tell the patients off instead.
It’s not the lack of rheumy nurse I object to – it’s the lack of an appointment time , and a sensible one at that, that doesn’t assume each patient can be dealt with in 2.5 seconds or whatever their crazy trial showed!
Tags: arthritis, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA)
‘What?’ cries anyone that knows me. ‘You? Chatting on Facebook? Didn’t even know you knew HOW to chat on Facebook.’ Well … just about… with a bit of help. This is for IFAA – International Foundation for Autoimmune Arthritis. I’m one of their ‘blog leaders’ helping to spread the word about their work … although I’m not very good at remembering to post etc. so I thought I should make the effort to get over Facebook-phobia! Here are the details about the chat but NOTE IT IS 8:30pm UK time!
Here’s the link: https://www.facebook.com/IFAutoimmuneArthritis Hoping to ‘meet’ you there.
This is a very quick update to my hairspray post. Good news – NO hairspray today – so I figure it must have been the sinuses! Hurrah!
I introduced Healclick last week with this post. In a nutshell, it’s a site that’s run for patients, by patients, and aims, amongst other things, to match people up to people suffering similar problems and symptoms and who are similar all round.
Well … they seem to be having a few teething problems at the moment but I hope people will bear with them while they get sorted, as it does seem a really good idea, if they can crack the technology! When I first signed up, they were matching people with percentages, but getting ‘100% match’ for a man who had RA along with a plethora of other things, just because he was close in age (is that really THAT relevant I wonder?) and perhaps because he was geographically close, didn’t really work for me. I can’t be 100% similar to a man, let alone all the other issues we didn’t share – so I wasn’t really that impressed with the matching system. And one of my 80% matches was someone who had migraines – well yeah, so do I, but she didn’t have arthritis at all.
Then they changed the way you viewed matches so that the percentages disappeared – a good move I think. It went to ‘great match’ or ‘good match’ or less. Now I think they’ve changed something again, because when I went back in this morning I suddenly have not a single good match. They’re all labelled as ‘low match’ and the people I was closely matched to have disappeared off my list altogether.
Ha – checked in ten minutes later and my matches are back! I’m still ‘great match’ with the man with lots of other conditions – I’m guessing it’s geography and age that does it, and I don’t agree with that, in this online world – BUT I do think I’m a good match with some of the people listed as ‘good matches’, so I’m feeling a bit more encouraged than I was!
Of course one major thing is that you have to fill in quite a lot of stuff in quite a lot of detail to really see how close a match is – so if you do sign up, be prepared to be bothered or it won’t work for you!
Tags: arthritis, doctor, GP, methotrexate, NHS, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, work
Something odd’s been happening lately. Several times I have suddenly smelt (and even tasted) hairspray – and once or twice it’s been a taste sitting at the back of my mouth/throat for hours and hours. The first time it happened I assume my colleagues (aka the junior penguins) had been drastically overusing the stuff, although neither of them looked lacquered (!) but the following day I woke up with the same thing, so I figured I couldn’t blame them after all.
Then it went and I thought no more about it for a few days … and then it came back! At its worst it’s really very unpleasant indeed – it makes everything taste slightly odd, even put me off my coffee for a short time, which is unheard of!
And then it went again.
I can only think of two serious possibilities for what might cause this, given that I don’t own any hairspray and it’s definitely not the JPs’ fault! One is a bit gross, so GROSSNESS alert, skip the next paragraph if you don’t want to be ‘grossed out’.
OK, here goes – I’m just getting over a nasty bout of sinusitis – and part of that is (or can be) having blood and puss form in the sinuses which then has to … erm … find a way out! The way out is either via the nose or down the back of the throat … and in my case (gross bit) it was doing both! Now blood has a sort of metallic taste that could, I feel, be confused (especially in my naturally confused state!) with the metallic smell/taste of hairspray. Of course you may have never tasted hairspray – lucky you! I’ve managed to ingest a bit now and then over the years when using it!
OK, that’s the gross bit out of the way. The other, very faint I think, possibility is the methotrexate. The posh name for an unexplained metallic, foul or unpleasant taste in the mouth is Dysgeusia and it has been reported, very rarely, as a side-effect of the methotrexate. However, the little I can find about it SEEMED to suggest that it doesn’t go away, and the only thing that makes it go is stopping the cause – i.e. stop taking the MTX. Well, it’s not THAT bad! I think the MTX has done me a LOT of good, so a bit of a bad taste in the mouth I can live with. Then again … it may be nothing to do with it anyway.
Needless to say, I won’t be popular with our stressed NHS doctors if I make an appointment and say ‘I’ve got this funny taste in my mouth…’ so I haven’t bothered. What I will do is see how thing are tomorrow morning, given that I take my methotrexate tonight. I THINK it’s been worst on Tuesdays the last couple of weeks, but am I just imaging that? I’ll find out tomorrow!