I have had a bit of a tidy-up of my blogroll. I’ve removed most of the blogs of people who haven’t posted for over a year – but if you’re someone who just posts really infrequently but still has a ‘living’ blog, and you’re miffed that you’re not on there any more, just drop me a note and I’ll put you back on! :-)
I have also added a few ‘new’ blogs – not new at all really, but new to me, in particular a couple about other forms of arthritis than RA. And I have finally got around to adding Carla, who should have been added AGES ago – sorry Carla, but at least I got there in the end!
Want to recommend a blog that’s not on here? I’d be delighted to hear from you. It might take me a while to get round to adding it, but I will do so … one day!
Tags: RA, Rheumatoid arthritis, shoulder, shoulder injection, tendon, tendonopathy
Well, I’ve had my second shoulder injection. It was a week or so ago now, and it’s definitely working. Things aren’t perfect, but they’re a heck of a lot better than they have been.
This was an injection into the tendon, not the joint, guided by an ultrasound scan so they could see exactly where the steroid injection needed to go.
The advice in advance with this one was don’t drive and do rest for 48 hours, so hubby kindly took me into the hospital on his day off. We decided to go a whole hour early in case of parking difficulties, so of course we parked with ease! But when we came out an hour later, it was heaving and I was really glad we’d made the decision to go early.
I don’t know why they bothered sending out instructions in the letter to wear loose and washable clothing, since it turned out I had to take off the top half and put a gown on anyway, because my bra strap was in the way! That was only mildly embarrassing, when the gown flapped about because the nurse couldn’t find the tabs to do it up!
Then I sat down facing the radiologist and the screen, as instructed, and he scanned the shoulder with ultrasound. He confirmed the tendon was indeed inflamed, pretty much exactly where I thought it was, but happily not torn. Then he got me to put my arm in an incredibly uncomfortable position and keep it there, and took out a scarily huge needle. ‘Focus on something else, Polly’ I told myself as it came towards me.
‘Just a little scratch,’ said the doctor, cheerfully.
It was more than a little scratch but not madly painful. ‘Don’t think about the BIG, SCARY NEEDLE Polly’ I said to myself, ‘ la, la, la, think of little gambolling lambs and mountain streams. La, la, la …’
‘Look,’ said the doctor cheerfully, ‘You can see the needle on the screen!’
Mmm, thanks mate, just what I wanted! And sure enough, there it was, a long, straight stiletto floating about in the various incomprehensible (to me) wavy lines of the ultrasound. Actually it was quite fascinating to watch – for a bit. Then it started to jigger about alarmingly, and whether it really was jiggering about inside me, or whether I just thought it was and it caused me to tense up, I don’t know, but suddenly it was really, really painful. I must have made a that’s really, really painful face because the doctor realised it was hurting and said he’d stop for a bit.
Now I don’t know about you, but when I have a ruddy great needle in part of my anatomy I’d rather just press on, so to speak, and get the job done, especially if the alternative is to sit and rest for a minute with the needle still stuck inside me – so I said no, it was fine, and he carried on. Actually the pain did diminish, so perhaps I had just tensed up for a bit.
While this was going on another doctor came into the room and apologised for having been absent. ‘No worries,’ said the radiologist, ‘you haven’t missed anything. It’s just a shoulder. Boring.’
I gave a little involuntary chuckle, which went straight over the doc’s head but the nurse quickly added, ‘Not that we’re saying you’re boring!’
At that the radiologist did have the grace to look mildly embarrassed, and he said, ‘Oh believe me – it’s good to be boring! We do hundreds of these procedures so I know exactly what I’m doing. You don’t want something rare!’
Well, that was fair enough I thought.
‘By the way,’ I said, ‘when the instructions say “rest for 48 hours,” what exactly does that mean?’
‘Whatever you want it to mean,’ said doc with a kindly smile. ‘There’s no scientific basis to it. Just see how you feel and what you feel like doing.’ So I did. They day after the injection it didn’t hurt much so long as I did nothing but veg about and be a couch potato, but it did hurt if I did ANYTHING with it. So I didn’t do anything with it. I watched an entire season of Dollhouse (thanks Maggie) and let hubby wait on me when he got home! The following day I thought, ‘I’m fine – I’ll go into work’ so I did.
MISTAKE! Two hours at work and my shoulder was in a lot of pain – so I went home again. (Advantage of being the boss!) By the next day it really was much better and it’s continued getting better and better so far – so flippers crossed that will continue!
I have just doubled-up on my monthly methotrexate blood-test, and I shall soon be doubling up on my shoulder injection. I’d already doubled up on colds. Now if the amount of work coming in would only double up too, I’d be happy!
So, why the extra blood test? Well, I had a call yesterday from the friendly, neighbourhood rheumy nurse. ‘I’m really sorry – we need you to come in and re-do one of the blood tests. The lab have done one but sent the other one back saying the sample is contaminated! We’ve never had that one before!’ I said, ‘I expect they dropped it. That would certainly contaminate the sample!’ I mentioned to my Mum later and her immediate reaction was, ‘I expect they dropped it’ too. I can’t really see how else a sample from one of those vacuum syringe things could get contaminated!
Anyway, all went well with it today and that should be the end of that. If this sample comes back ‘contaminated’ too though I’ll start to worry!
The shoulder thing is as I mentioned before – the scan plus injection. It’s come through. It’s at the county hospital and I was having a minor panic because it says on no account can you drive after having the injection. It’s come through for a Wednesday and that’s not a good day for anyone to give me a lift – it just so happens mum’s always busy on Wednesday’s, a very dear and far too obliging friend who’s local to me who would do it any other day has her small grandson to look after that day, and … well, I can hardly ask the girls that work for me; it’s bad enough that I’ll be out of the office all afternoon! Most of my other friends are either working or not local enough … or in one case don’t drive!
However, when I finished panicking and had a proper think I realised that by astonishing coincidence, hubby had that day off – so that’s that sorted! Poor hubby – not his ideal day off, driving me home from hospital, but he’s been very sweet about it and not pointed that out at all!
I drove after the previous injection! I didn’t even think about it. Everything was fine and I just got in the car and went back to work. I’d rather not risk it this time though as it’s a lot further away than the local surgery if there was a problem!
Well I’ve had the injection in my shoulder – the one I wasn’t looking forward to in this post. In fact it all went very smoothly. I phoned the GP and she was quite amenable to doing the injection and gave me an appointment for the next day.
While I was there I took the opportunity to ask her if she thought it was RA related, just out of curiosity, and because Andrew (see comments in this post) had got me wondering. In fact, it’s almost certainly not, because I have an excellent range of movement in the joint itself. I can’t lift the arm up past horizontal, but the ball will slide around in the socket any which way you like, provided it’s not my muscles/tendons having to do the work, so the joint isn’t affected.
I was a little concerned, but being a brave penguin didn’t show it, when doc picked up this huge sausage-shaped cannister and said, ‘Right, if you can just get your arm out … ‘ Yikes, I thought, surely she’s not going to inject ALL THAT! ‘Just going to put a bit of cold spray on first,’ she said, cheerfully, and I realised that was what the cannister was. Phew! The syringe was actually quite small, as was the needle, when compared to the ones that go in the knee!
In fact the injection hardly hurt at all. I can’t say the same for the shoulder a few hours later, when the fast acting anaesthetic had worn off and the steroids hadn’t kicked in yet! I had a thoroughly miserable evening and worse night, but the next morning I could brush my hair without going ‘OUCH!’ and the following night I could get my bra off. Can’t actually mange to get the damn thing ON in the mornings yet – partly because mornings are bad anyway due to general RA stiffness, and partly because on takes longer than off, giving my shoulder a chance to remember that it hurts … but I think we’re getting there.
Flippers crossed that this injection will do the trick and allow the tendon time to heal. In the meantime I’m continuing with the physio exercises to try to strengthen the muscles so it doesn’t happen again.
If the injection fails to work, we’ll be looking at surgery, and I do NOT want to go down that route if I can possibly avoid it!
Someone on the NRAS blogging site mentioned that Food Hospital, a programme on Channel 4 that aims to help people tackle their medical problems through food, was featuring someone with RA this week, so I gritted my teeth and watched it.
It’ not something I’ve ever watched before and it exceeded my expectations; however, my expectations were spectacularly low! It’s a typical ‘magazine programme’ where each week they have three or four different featured illnesses and dietary solutions, and some other features too, and they switch from one to another and back – which meant I had to watch it all and not just the RA bit!
I was pleasantly surprised to see that they had genuine hospital-based medical practitioners involved, and pleased to see that they did in fact explain the difference between rheumatoid and osteoarthritis, and had a reasonable explanation of rheumatoid.
The lady who they were helping had very severe rheumatoid arthritis and had already had a number of joints replaced. As she couldn’t exercise at all she had become quite overweight, and I did feel that they didn’t make enough of the fact that this hadn’t caused her arthritis and indeed that many people with RA are not at all overweight. (I am, of course, not one of them, but that’s another story.) I also strongly objected to the fact that they actually said that her diet contained ‘a lot of red meat and processed meats’ and then showed a picture of a counter-top (if I remember rightly) piled high with cakes, muffins, fried food etc.
I was chatting to a friend about it a couple of days later and she said, ‘Gosh, her normal diet looked awful!’ And I pointed out that there was no reason to suppose that that was her diet (apart from the red and processed meats comment). That was just a TV ploy: let’s show a pile of fattening food because we’re talking about being overweight, and of course if you’re overweight you obviously must scoff cakes and fried bacon the whole time.
Anyway, they put this lass on a high omega-3 anti-inflammatory diet, with the side benefit that she would also lose weight, and hey-presto she lost quite a bit of weight and in ten weeks her ESR (erythrocite sedimentation rate, anti-inflammatory marker) had gone down from 28 (well above normal) to 20 (just within the normal range). Good news indeed. Good enough that I’m going to be increasing my oily fish intake, as any penguin should!
However, what they neglected to mention on the telly, although if you check out their website they do tell you, is that although the ESR went down during that period there have been “no clinical changes yet, in pain or mobility”, but that is expected as this is a long-term approach.
They also say “Beth’s rheumatoid arthritis will continue to be difficult for her but with continued weight loss she should continue to see slight improvements in her condition.” So again, the emphasis seems to be on the weight, encouraging people (especially ones who don’t think too hard – the majority?) to see this as a cause of her rheumatoid arthritis.
And the final bit on the website that I’m dubious about is the sentence: “Beth lost weight on the diet which has helped her ESR level drop within normal range.” To me the way this reads is slightly misleading. I think they meant, “Beth lost weight on the diet. The diet helped her ESR levels to drop to within the normal range.” However, the way it reads suggests that weight-loss has a direct correlation with ESR reduction. I’ve never heard that, and I’ve done an internet search to look for a link between the two and can’t find anything at all. As I say, I think it’s just the way it’s written that’s misleading, rather than that they’re trying to claim there is a link, but it’s just another little irritation in what was, all things considered, not too bad a programme after all!
Tags: arthritis, flare, flare-up, joint pain, pain, R.A., rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, thumb
I’ve been cruising along very nicely thank you for the last few months. I made the mistake of getting used to it I think … Great, I feel fine … let’s get on with stuff then. Well, you only live once, people to see, things to do, natural history surveys to complete, courses to go on, friends to see … Spanish to learn, embroidery competitions to enter.
Next time I see my rheumatologist, I thought, perhaps we can talk about reducing the MTX.
When will I learn?!
It started a couple of weeks ago with sudden, severe pain in my right thumb. Then it went away. I didn’t see it as a warning sign – I’d got too used to being footloose and flare free. Then it came back … and then other bits started to hurt too … ooooooooh-k, maybe this is a flare, I thought.
And it was.
Fortunately not a terrible one – one of my flare-ettes/aka fizzles, but bad enough to act as a little reminder. It’s over now … I think … but I’m back to being careful …
Well, apart from botanical drawing class an hour’s drive away on Saturday, more natural history recording on Sunday, interviewing tomorrow …
Tags: arthritis, autoimmune diseases, immune system, new scientist, placebo effect, psychology, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
According to this article in the New Scientist (6 September 2012) the “the immune system has an on-off switch controlled by the mind”. On reading the article, one feels that this isn’t actually as daft as it sounds at first. The point is that, “the immune system is costly to run – so costly that a strong and sustained response could dangerously drain an animal’s energy reserves.”
Hmm, does that start to explain the fatigue felt by so many RA patients and dismissed by so many doctors? Given that RA is apparently caused by an over-active immune system, then surely a strong and sustained over the top response must be pretty fatiguing?
Anyway, back to the article … given that the immune response is energy sapping, the theory is that the immune system will only bother kicking in to fight a mild infection if it feels the reserves it will drain can be re-stocked. Apparently Siberian hamsters will fight a mild infection in the summer, when food supplies are plentiful, but won’t do much to fight it in winter conditions.
This leads to the idea that the mind has an ability to play up/down the immune response depending on whether it feels there is help available … and that leads to an explanation of why the placebo effect works. If you think you’re taking a drug to help fight an infection, say, that makes it worthwhile to put up a fight and bring in the immune system, the theory goes.
The theory has now been supported by some computer modelling, which is all explained in the article but which I won’t go into here.
It leads to some interesting questions, to my mind, about autoimmune diseases.
Being a little flippant here, does this mean that all sufferers of autoimmune diseases are optimists who are so confident that help will always be at hand, that we bring our immune systems in on the flimsiest pretexts?
Is the reason autoimmune diseases seem to have become so much more prevalent in the last few decades (so I’m told) because we’re all generally pretty healthy (until we’re not) and so the body/mind doesn’t have to question whether there are resources available?
And finally, if there’s an on/off switch in my mind, then why can’t I just turn the damn thing off and get on with life?
Tags: arthritis, exercise, hospital, NHS, nurse practitioner, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness
Physio: Good morning! So, we’ve been doing acupuncture on your shoulder, yes?
Penguin: <Feathers on end, eyebrows raised> NO!
Physio: Oh … you seem very definite about that.
Penguin: Yes … I am.
Physio: Erm … what have we been doing then?
Penguin: Some exercises and some frictioning [a kind of massage on the tendon]
Physio: Oh yes, and how was that going?
Penguin: Well the frictioning last week really seemed to help.
Physio: Great. Let’s do some more of that then. Now, the exercises, it was this one, with your arm bent, raising up and out, yes?
Penguin: No …
And so went most of the session. Having said all that, she did do the frictioning and it did help, and once we’d established what exercises I was doing, all went relatively smoothly.
THEN she turned on her computer (with my notes on it of course).
What had happened was that I had the first appointment of the day and she’d obviously been running late and thought, ‘Never mind, I’ll wing it.’ So, a word of advice to health practitioners everywhere – don’t! I’m sure it took her longer to find out what she was supposed to be doing than it would have taken to turn on the computer before we started!
Tags: arthritis, doctor, hormones, hospital, hot flushes, NHS, night sweats, RA, red cheeks, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, rosacea, urine sample
Well, I went for my x-rays – appointment booked half an hour before the dermatology appointment, and it all fitted in fine – I had about fifteen minutes to find the dermatology department once the x-rays were over, and I found it without any problem. All going rather well so far.
Then I waited … and waited … and waited … and waited – but that’s just the way it is. Fortunately I’d remembered to take a good book!
Dermatology lady said she’s fairly sure I haven’t got lupus (hurrah) but I have got rosacea (boo). Unfortunately I’ve been applying gunk to my face for nearly five months now and it’s not going away at all, so the obvious solution seems to be ‘try it a bit longer, and in the meantime we’ll discharge you’. Hmm … thanks a bunch!
Having said that, she was very pleasant, really took her time, asked sensible questions and listened to the answers. For that, I don’t mind waiting a bit!
One of the things she asked was, ‘Do you get night sweats?’ to which the only possible response was, ‘Do I get night sweats! You bet!’ So we talked about the whole ‘early menopause’ thing and the fact that although it started 5 years ago I didn’t seem to actually have gone through menopause and the hormones had never actually been fully investigated.
And that led to the delights involved in the title to this post. ‘I think we should test your hormone levels,’ she said, ‘ but I’m afraid the test is a bit long-winded. It involves a 24-hour urine sample.’ I couldn’t resist the obvious response. ‘I can’t pee for that long!’ Poor lady must have heard that one a few times before but she was very patient with me!
I have to keep all urine I produce over a 24-hour period and put it in a LARGE sample bottle, which I had to collect from the labs in a beautiful LARGE bag with things like, ‘Biohazard’ and ‘warning – dangerous substance’ stamped all over it, as it contains hydrochloric acid to preserve the sample, once the sample is in there. Luckily I had brought a bag for my book and other bits so I just put it inside that – otherwise slightly embarrassing to walk around with.
I haven’t done this test yet as she wisely suggested waiting for a day where I could stay in the house for 24 hours, and there aren’t many of those, but I’m planning to do it soon. Once done, and I’ll finish my 24 hours at 8 0′clock one morning, I have to jump in the car, dash over to the hospital, deliver the sample ‘for immediate testing’ and then dash up to the top of the hospital for a blood test – which should take place straight after the sample is finished – a bit tricky since I live 30 mins or so from the hospital! Never mind – hopefully it’s not THAT critical.
If anything comes out positive/negative/worrying about this test, that’ll mean further referrals etc. as it’s hardly a dermatology issue. It’ll be interesting to find out either way though, as the hot flushes and night sweats are horrendous at the moment and if there is something hormonal going on as shouldn’t be, it would be nice to know!
In the meantime I shall continue to be a ‘ruddy cheeked penguin’ – a rare breed indeed.
Tags: arthritis, consultant, diagnosis, doctor, hospital, NHS, nurse, nurse practitioner, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Something’s going on. Call me a nasty, suspicious, cynical penguin, but this just isn’t normal. I went for my routine rheumatology check – you know, the one where they say, ‘Oh go away – we’re not interested in you. Call those symptoms? Ha! I see people in a much worse state than you every day!’ (As though that has anything to do with the price of fish.) But this time it was different … It started off with the usual intro as though we’d never met before, but this time, as I looked at her blankly, she actually said, ‘Oh – we’ve met before, haven’t we?’ Then she looked at the notes – yes, the ones she’d taken in with her five minutes before she called me in, but obviously hadn’t read, and went, ‘Oh yes, I saw you last time.’
OK, not an auspicious start, but nevertheless, better than expected. But here’s where it gets weird. She asked how I was. I said fine. She said ‘scale of 1 to 10’ and I said ‘1’. She looked blank. ‘Well, is there anything you want to ask me?’
‘No, not really.’
‘Well … is there anything I can do for you?’
‘You can say, “You’re fine. Go away and come back next year,” and then I’ll do that.’
‘Yes, but … I mean surely … ‘
What’s going on here – you usually can’t wait to see the back of me.
‘I know – you haven’t had any x-rays for ages. We ought to check there’s nothing going on below the surface that we’re unaware of.’
Really – I was diagnosed in 2007. In 2009 I mentioned x-rays and how the guidance said they should be done a year afterwards and then every so many years – but it was poo-pooed. ‘No, you’re fine. We see worse people …’ etc.
I haven’t had any x-rays done since and it hasn’t worried anyone.
‘Good heavens, do you know, you haven’t had any x-rays done since you were diagnosed!’
‘Yes, I know.’
‘Well I really think you should have them done. I know it’s inconvenient coming in specially and I know they’re a bit of a pain, but I really think …’
‘Fine. I’m happy to come in.’
And then, to make matters even more Alice-down- a-rabbit-hole, she said they could arrange the x-rays to fit in with another appointment I had, to save on trips in. Hang on – when has the hospital ever put itself out to help its out-patients? This is new – but I’m not complaining.
Of course, in the next couple of days the universe got itself back on track. The appointment for x-rays arrived, on a completely different day to my other appointment and at an impossible time two days from when the letter arrived.
Ah – that’s more like the NHS I know and love, I thought. But wait … I emailed them (yes, they’re now so far into the modern age you can email them, woohoo) and said, ‘Sorry, can’t make that, but I will be in the hospital on this date for this appointment. Can you fit round it?’ And wha’-do-ya-know – they actually did!
So … did it work? Did they fit in? Did I run late for the next appointment? For answers to all these questions and more, you’ll have to wait for the next exciting episode of … Polly’s Adventures in NHS Wonderland.