Tags: aches, arthritis, cold, diagnosis, doctor, R.A., rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), shoulder, stiffness, tendonopathy
When I had that shoulder injection I was finding it very hard to pinpoint exactly where the pain was, but I know it was kind of ’round the back’. Well … the pain round the back has gone, the mobility is improved but not great, but now I can exactly pinpoint the pain that remains and it’s to the side/front! I still can’t lift the shoulder much above the horizontal.
I went to see my GP about it last week and she’s put me forward for a scan. I was rather hoping for another injection but she says it’s too soon as, since there has been some improvement from the one I had, it should still be working away and might start to improve the other bit too. I rather doubt that, but she’s the doc, so we shall see!
The other thing she said was that if they do the scan and can see the exact spot that is inflamed, they can do the injection there and then and be sure that it’s in just the right place. And being the NHS, by the time the scan comes through I will certainly have left enough time between injections!
So for the moment it’s a waiting game … again!
In the meantime I have my second cold of the winter, and it’s not even supposed to be winter yet. <sigh, achoooooooooooo=”"> I’ve also had an unpleasant flare through most of September and the beginning of October, but that seems to be over now – phew. As usual, nothing whatsoever showed in the bloods. In fact, when I have my six-monthly rheumy appointment in December I’m expecting him to say ‘Oh, did you have a bit of a flare in July – your bloods are slightly up.’ I was 100% fine in July!
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: muscle pain, shoulder pain, tendinopathy, tendonitis
Thankfully this one will NOT be in my knee – the one in the knee was possibly the most painful experience of my life so far – but then again it was short-lived and it did cure the problem. This one, though, is going to be in my shoulder.
If you’ve been reading the blog for a while you’ll know I’ve had problems with my shoulder, which turned out to be non-RA related, for a while. I’ve had several physio sessions and a variety of exercises, but although it seemed to be getting better for a while, it suddenly got worse. It’s ‘tendinopathy’ (and that does appear to be the right spelling). It’s the chronic version of the probably more familiar (certainly more familiar to me) tendonitis; in other words it’s chronic inflammation around the tendons, in this case those that attach the rotator cuff muscles to the shoulder bone (but don’t ask me which shoulder bone because my anatomy isn’t great!)
Anyhow, since physio isn’t working, it’s an injection for me. I can’t say I’m looking forward to it, but it’ll be nice to be able to do my bra up myself again!
Thanks to the weird and wonderful workings of the NHS though, the physio has to write to my GP to ask her if she’ll give the injection; I then have to phone my GP in about a week (to give her time to receive the letter) and ask her if she’ll do it, based on the letter. I think she has the right to say no, based on nothing more than the fact that it’s the hospital physios recommending it, and it will be her budget if she does it, so she can send me back to them. I’m not sure about that, but reading between the lines I think that’s how it works.
Since the doctor is a couple of minutes down the road and the physio is a half-hour drive away, and since it hurts the shoulder to drive, I’m hoping common sense might prevail. We shall see. NHS Wonderland Part 4 coming up, I fear!
Remember those blood tests and that enormous urine sample I had done last week? Well I hadn’t heard anything and I thought I’d really like to know what the heck was going on. After all, these tests were both ‘for immediate processing’. If the lab doesn’t get on with it the tests are invalid. So logic (this is logic outside Wonderland of course) would dictate that the results were available last Friday.
Once the results are produced they have to go back to the department that instigated the tests. This department is in the same hospital as the laboratory. OK, it’s three floors up, but it’s the SAME BUILDING. We are now in the electronic age. In the normal world the lab would process the results, email them to the department that wants them (same organisation, same building, same server I expect). The department would receive them and, when the patient phoned up, they would be able to inform the patient of the results within a couple of days.
Now for the great British Health Service version: I had my monthly methotrexate blood test on Monday at the GP surgery. ‘Wishful thinking I expect,’ I said, ‘but I don’t suppose those test results have come in?’
‘When did you have them done, love?’
‘Last Friday, but they were for immediate processing, so I just wondered …’
‘Oh no dear, it’ll probably take two or three weeks.’
OK, deep breath … think surely she must be wrong, what about the immediate processing thing? Wait a few days. Phone the GP again. Have a similar conversation, but this time with the receptionist.
Then penguin has a brainwave. I know, I’ll phone the hospital department. They must have the results (immediate processing … did I mention that?) …
Well I got through to the charming consultant’s secretary, who was very helpful and looked it up for me. ‘Oh, I’m sorry, we don’t seem to have anything at all for you yet…’
‘Well how long would you expect it to take?’
‘Well it can take up to three weeks or so, and then after that the Doctor has to receive the results and then dictate a letter to be typed, and then it has to go to the typing pool and that can take a while …’ But she really was a lovely lady, and on top of that I sneakily didn’t admit to her that I only had the tests done last Friday* even though the appointment with Dermatology was a few weeks ago … so she’s putting a chase on it for me and seeing what she can find out.
Flippers crossed for results soon. But really, the mind boggles – I presume it’s not the same system in Oncology, but I wouldn’t like to bet on it! It would be nice to think that if I don’t hear anything in the next day or two I could assume the results are negative … but I know the NHS better than that!
* Well she didn’t ask …
Tags: dentist, flare, joint pain, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I’ve just been for my regular three-monthly dental check-up. It was the nicest and most uplifting dental check-up I’ve had in my entire life, punctuated not by drills and pokey things but by comments from the dentist like, ‘Gosh, you’re doing a fantastic job looking after those gums!’ and ‘Yes, things are looking really good here’ and ‘You’re obviously brushing really well.’
Then he made an interesting point, and one that I’m sure is right. To summarise (as he can waffle on a bit), he said it’s amazing how everything comes as a complete package; when my arthritis was bad, my hands weren’t great (and certainly my arms), and consequently even though it wasn’t a conscious thing I probably wasn’t brushing as well or for as long. On top of that I was generally feeling pretty rotten and it’s entirely possible that a day went by here and there without me even giving teeth a passing thought. I’ve been really well now for a good few months, with barley a flare, and not that many twinges (except that blasted left knee, which is still a bit of nuisance), and my shoulder (non-RA) is recovering well, and as if by magic my teeth are doing fantastically too.
If you have severe RA those holistic effects must be blinding obvious, but I thought it was quite interesting that even with a very mild condition like mine, there are differences that can be seen in the most unexpected places.
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.