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!
Tags: Christmas, cookery, cooking, eggs, German Christmas biscuits, zimstern
Health warning: This post has nothing to do with health.
Why do I do it? Every year at round about this time, fooled by a mixture of Christmas Spirit and the Great British Bake-Off perhaps, I make the same mistake: I believe I can cook … or at very least bake. I’m sure I used to be able to bake, once, a long, long time ago, before hubby, before RA, before old age … well OK, middle age, but I’m feeling old right now. Maybe I’m just imaging it though. I know I did some nice scones … once …
Anyway, my one cook-athon of the year is New Year’s Eve and I fancied making some biscuits as well as my usual main meal.
This year I’d carefully ruled out all the things I knew I couldn’t tackle on the cooking front – out went anything to do with melting sugar (after several burned saucepans and unbelievable pongs over previous years); out went anything to do with melting chocolate, (after several attempts at mousses that turned into gritty messes). But this recipe, courtesy of The Telegraph, looked simple enough.
Even though it looked simple, I thought I’d better try it out in advance.
I think I was mistaking brevity for simplicity. The brevity, I soon realised, was due to the fact that the recipe was written for people who know how to cook. How silly of me to think I was one of them. Mind you, I probably didn’t help myself because I was using our new food processor.
You start off in this recipe by making a meringue mixture. I’ve done that before. I’m sure I have. Heck, I make Snowqueen every year*. But I’ve always used a hand whisk.** This time I wanted to try out the new toy. It has a main bowl, a midi bowl and a mini bowl. Knowing how eggs fluff up when they’re whisked, I thought I’d use the main bowl. Hah! Other people’s eggs might fluff up – mine sat there for five minutes looking, well, runny – just like they had five minutes before straight out of the egg. Funny, I thought, it’s really not whisking very fast at all. I thought it would go much faster than that.
‘ Doesn’t sound well,’ commented Hubby, from his perch in front of the telly.
I gave it some thought and decided that it clearly wasn’t working in the main bowl, so perhaps I should try the midi bowl. I put the midi bowl on the kitchen counter, took the main bowl carefully off the food processor and tipped the egg into the midi bowl.
At this point it would have helped, really helped quite a lot, if I had remembered that there was a hole in the middle of the bowls for the motor to go through.
I didn’t quite have egg on my face, but I did have it all over the kitchen counter, on the glass counter saver (which didn’t save the counter) and dripping onto the floor, which hubby had only washed a few hours before.
Taking a few deep breaths and staying calm, so calm that hubby doesn’t actually even know about this bit, and won’t until he reads the blog, I decided there was still about an egg’s worth left in the bowl, so got another egg out of the fridge, added the white to the midi bowl and plugged the whole lot into the food processor Or at least that’s what I thought I’d done. It went whir, whir and nothing moved. At this point I dragged hubby away from Warehouse 13 to come and investigate. We stood scratching our heads and trying to make the various bits of whisk look like the whisk in the instruction book, which, as is the way of these things, is nearly all picture with very few words. After much head scratching and some hilarious attempts at combining the bits, I realised that a key component was still attached to the main bowl whisk, now sitting in the sink.
So I whisked the eggs into soft peaks. They made beautiful soft peaks. Then I added the sugar. Well, it doesn’t tell you in the Telegraph recipe that you have to add it a bit at a time, because it’s written for people that can cook. If you don’t add it a bit a time, the whole lot collapses into a runny mess.
It collapsed into a runny mess.
‘You’d better see if Delia has a fix,’ suggested hubby. I knew there were no fixes when a whisked egg has un-whisked itself, but I thought I’d have a look anyway. Basically her advice boiled down to ‘Don’t under-whisk the eggs – but don’t over-whisk them either or they’ll all collapse. And add the sugar an ounce a time, whisking all the time.’
Nothing else for it but to start again. Hubby, supportive and sympathetic, suggested I stopped and had a coffee first, but no, I knew better, I wanted to carry on.
So, more eggs, this time into the bowl without mishap, more nice soft peaks.
‘Make sure you can turn the bowl upside down and the eggs don’t fall out,’ says Delia. So I did that. Only I’d forgotten that the whisk was in bits and a bit fell off when I turned the bowl upside down. I made a grab for it. It was HOT. I managed not to screech so hubby doesn’t know about that bit yet either. Still, things were looking up; the eggs looked lovely. Woohoo.
I started to add the sugar a little bit at a time. I was really careful. Really, really careful. Itty-bit at a time – whisk, whisk, whisk – another itty bit. I kept checking. It looked lovely. Glossy, peaky, beautiful … I kept adding sugar, I kept whisking …
Can you see what’s coming? I was being so careful that I’d completely forgotten the ‘don’t over-whisk them or they’ll collapse’ bit.
It collapsed into a runny mess.
On top of that the kitchen was in an unbelievable state – it looked like it had snowed indoors. If you’ve ever cooked with icing sugar you’ll know what I mean. Even enormous cat was liberally decorated with icing.
I threw a wobbly – hubby supportive and sympathetic – ‘There, there penguin, it’ll be OK.’
‘IT WILL NOT…’ (I’m a real charmer when I get into a bad mood!) ‘ONCE IT’S GONE, IT’S GONE!’
‘Well time to stop now. Sit down and have a coffee’
‘LIKE I HAVE A CHOICE? We’ve run out of BLOODY EGGS!’
So I had a coffee – with ill grace! And hubby, bless him, quietly went and washed everything up before I even realised what he was doing!
Maybe it’ll be Snowqueen for New Year’s Eve pudding again then …
Or maybe I should stick to what I do know how to do: crochet.
* A meringue-based ice cream. I’d forgotten that I actually buy the meringues ready made from the supermarket.
** Later realised this was to whip the cream for the Snowqueen. Cream, I can do.
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: 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, 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.
Tags: arthritis, autoimmune arthritis, diagnosis, doctor, fatigue, GP, IAAM, joint pain, knee, methotrexate, MTX, NRAS, nurse, occupational therapist, OT, pain, physical therapy, physio, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, tiredness
One of the many things people with rheumatoid arthritis battle with is the many misconceptions around the disease, the most ‘popular’ of which is that ‘arthritis is wear and tear on your joints’. One of the reasons this misconception is so hard to grapple with is that it’s true – sometimes. There are many, many kinds of arthritis – all arthritis means is joint inflammation. It comes from the Greek arthron (arthretes or similar depending on which dictionary you look in!) for joint, and –itis, a suffix used to indicate inflation, so it means inflamed joint.
What the word arthritis doesn’t tell you is why the joint is inflamed, and thereby hangs a tale! It gets even more confusing because arthritis tends to be split into the many kinds of ‘inflammatory arthritis’ on the one side, and osteoarthritis, which (is ‘wear and tear’ though by no means always fair!) on the joints, on the other. And yet arthritis means inflammatory, and of course osteoarthritis can cause some inflammation too, so it makes it even harder to explain the differences simply.
Perhaps the most important thing is that however unpleasant, debilitating and downright painful osteoarthritis is, it affects the joints and only the joints. Rheumatoid arthritis and the other related autoimmune diseases are just that – diseases, aka illnesses, and can affect considerably more than your joints.
The difference in a nutshell
Osteoarthritis (also known as wear-and-tear arthritis or degenerative joint disease) is caused by the cartilage between the bones in a joint wearing away or breaking down. The cartilage basically sits between the bones of a joint and stop them rubbing together. When they do rub together because the cartilage is worn away it can cause a great deal of pain and debilitation. It often (though by no means always) occurs in one joint, and may be a joint that has been used a great deal e.g. a blacksmith getting osteoarthritis in an arm joint.
Rheumatoid arthritis on the other hand (and that’s the one I’m going to talk about because it’s the one I know, as I live with it every day) is a chronic, progressive, inflammatory arthritis. Chronic means long-term, it’s there and, in this case, it’s not going to go away. Progressive means without treatment it’s likely to get worse. It is an autoimmune disease, whereby, for reasons not yet understood (though theories abound) the body’s immune system attacks some of the body’s own tissue instead of (or as well as) invading bacteria etc. In rheumatoid arthritis (RA) it is the synovium (joint lining) that is the main target of attack, but many other organs can be affected too.
Spot the difference
Even doctors find this one tricky, which is why RA can sometimes take a very long time to diagnose. Another problem is that RA seems to crop up with infinite variety; just about every patient ‘presents’ differently when they go to see their doctor. Some things to look out for though are:
RA will almost always occur in more than one joint at the same time
- RA will often involve obvious swelling around the joints
- RA will often involve obvious redness around the joints
- People with RA will often find joints extremely stiff first thing in the morning, with this stiffness wearing away gradually over a period of an hour or more
- People with RA will often feel unwell, with a kind of general ‘don’t feel good’ feeling including tiredness, headaches, lethargy and fatigue
- RA apparently often occurs ‘symmetrically’ – i.e. if you have it one hand, it will also occur in the other. If you have it one knee, it will crop up in the other one too.
- RA frequently affects the small joints – those in the hands and feet, whereas osteoarthritis often affects the larger joints.
But see all those ‘often’s and ‘almost’s? That’s why it’s so hard to diagnose! The worst of my RA, for instance, has been in my knees and shoulders, so I don’t fit the ‘small joints’ pattern, although it does all affect hands and feet.
The good news as told by Pollyanna Penguin
If you have osteoarthritis, short of joint replacement and painkillers there’s probably not a lot you can do about it (although maybe glucosamine helps in some way – the jury is out!) If you have rheumatoid arthritis there are treatments available. They are many and varied, and some work for some people and others work for others and you’re really incredibly unlucky they won’t work for you ; if you’re new to this whole RA thing, don’t panic when you read the blogs all around the RA community. There are hundreds of people out there whose RA is under really good control through drugs and/or other treatments, and as a consequence they consider they have better things to do than blog about arthritis! So those of us who blog tend to be the unlucky ones – although of course there are exceptions. I’m on the fence here – I’m a lucky one – things are pretty much under control, and I only blog once in a while when I have something to say or those nice folks over at IAAM ask me to!
There are many medical treatments out there, and there are new ones coming out quite often too. The new ones, largely ‘biologics’ tend to be very expensive at the moment so your doctor will probably start you off on some of the older ones, which are ‘cheap as chips’ as one of the rheumatology nurses at my hospital put it. I’m on that old stalwart methotrexate. It’s the most commonly used drug I think, it’s certainly ‘cheap as chips’ these days, and for me it really works. Some people have nasty side-effects from it though, and for others it just doesn’t do the job. If that’s the case then it can be tried in combination with other things, or you might be moved on to one of the spangly new biologics.
You might, of course, opt to go for a non-medical treatment. My personal belief is that it’s a good idea to get things under control with medicine and then use other things such as physiotherapy (physical therapy is the US translation!), occupational therapy, acupuncture if you think it helps, dietary things etc. added on top, because I believe that this is a progressive disease and that these various medications, although they won’t flat out cure you, can and often will stop the progression, which is hugely important. Other people disagree and use complementary therapies, which seem to help them. It’s your choice – but please, just do your research before you decide!
So, it’s not all doom and gloom – anyone with RA (or osteo for that matter) would rather not have it, but there are things that can be done, and there is also support out there, from NRAS and Arthritis Care in the UK, the Arthritis Foundation (and others I’m sure) in the US and UK, and now from IAAM, the International Autoimmune Arthritis Movement. IAAM are doing a lot to increase people’s awareness and understanding of what autoimmune arthritis (RA being one kind of that) is, and I’m proud to be a member and a ‘blog leader’ for them. They have established World Autoimmune Arthritis Day (WAAD), to be held annually on May 20th, online and during all time zones, making it a 47-hour online event! This Virtual Convention will unite patients, supporters and nonprofits from around the globe, inviting them to participate in both live and on-demand presentations, scheduled live chat sessions, surveys, live Call to Action posts and access to an online library of downloadable resources that can help people with autoimmune arthritis and their supporters in managing their diseases. WAAD is registered on 16 health calendars internationally and has already received nonprofit support from over a dozen organizations, including the American College of Rheumatology, the Spondylitis Association of America, Arthritis New Zealand, the International Still’s Disease Foundation and Lupus UK. As the official Host of this historic event, IAAM invites YOU to be a part of it too. Best of all? It’s FREE to register!
World Autoimmune Arthritis Day (WAAD) website link- www.worldautoimmunearthritisday.org
WAAD registration link- http://events.r20.constantcontact.com/register/event?llr=0&oeidk=a07e5n7i1aq5f98d0e9
And what’s more, it’s IAAM’s first birthday on May 7th. Slightly in advance Happy Birthday to you, Happy Birthday to you, Happy Birthday dear IA(AAAA)AM*, happy birthday to you.
* Can’t sing it properly without some extra As!