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!
Tags: aches, arthritis, beans, diagnosis, doctor, exercise, fibromyalgia, joint pain, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, shoulder pain
If I had to come up with a list of the top ten things I never thought I’d be saying, that’s got to be up there among them!
I had a physio appointment yesterday for my dodgy shoulder – the one the doctor said was RA and would probably need a joint injection. Well … according to the physio it isn’t and it won’t … and I think she’s right. She thinks it’s likely to be inflammation relating to a previous episode of joint inflammation which caused the joint capsule to swell, so that the muscles around the glenohumeral joint, the ‘rotator cuff’, were pushed about a bit and got inflamed as well. The joint problem seems to have died down, leaving the rotator cuff problem zinging away like a good’n, unfortunately.
Apparently one in three people over the age of forty have a rotator cuff problem anyway, nothing to do with RA, so it might not even be linked, but since I’ve had no injury etc. to exacerbate it, it probably is.
Anyhow, this physio seems to have had prior training as a torturer, although she assured me that she started as a physio straight out of uni last year, but I’ve got to admit that with her heavy and darned painful massage, ultrasound and various exercises, the shoulder is a whole lot better already today, although she says it will probably take three months to heal completely … and that’s if I’m a good penguin and keep remembering to put my nose on my elbow!
Yes, that’s one of the bizarre exercises I have to do to stretch the muscles. Stand feet about a foot from a wall, rest my forearm on the wall in front of me with my upper arm at right-angles to the shoulder joint and then … rest my nose on my elbow, for about three minutes a day, but not necessarily all at the same time. It really does stretch those muscles! Looks extremely odd though. I can hardly wait to do it in the office and entertain the junior penguins! (Or perhaps I’ll just slink off to the loo and do it there!)
The other main exercise involves lying on the bed with a can of beans and doing a kind of weight-lifting thing. At least having a can of beans by the bed makes it easy it to remember to do the exercise!
Tags: aches, arthritis, exercise, fatigue, joint pain, knee, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, tiredness, work
I’ve spent the last six months on a very useful course run by our local university business school, on helping small businesses to grow. It’s been great and I’ve met some lovely people along the way. Tonight we were asked to do a ‘showcase’ where each of the businesses on the course had a little exhibition stand and said a few words into a mike and generally chatted to invited guests, university bigwigs, previous course attendees and each other.
Unfortunately I was dreading it because I knew the admin was a mess. Fortunately although the admin was a mess, a handful of very brave people had stepped in at the last minute to salvage what they could, and they did a marvellous job. However, as suspected, when we arrived to set up our exhibit, rather than the floor-plan with everyone’s tables labelled, display boards there and of course, vital for me, and definitely requested in advance, CHAIRS, there was organised chaos.
Fortunately the wonderful people who’d stepped in at the last minute were on hand to sort everything out, and equally fortunately we’d brought some folding chairs with us! I did feel sorry for some of the others though, as there were no chairs available at all.
Having said that, once the evening got going I hardly had a chance to sit down, as we were all buzzing about and chatting to each other. There was a really good atmosphere and, in spite of not looking forward to it, we had FUN. On the other hand, I’m absolutely wiped out, completely shattered, totally exhausted … and my left knee is giving me gyp from so much standing around.
Entirely my own fault of course. I had a chair, I have the capability to sit down in it, but I suppose it was partly not wanting to miss out on anything and partly the old not wanting to admit I had a problem, leading to one of those conversations. You know the ones: ‘My auntie’s got arthritis too. It’s all cleared up though since she started rubbing in bindweed’ or ‘all you have to do to get rid of it is lose some weight.’* What I should have done was go and have a chat with the yoga lady and get her to give me some stretching exercises – but every time I looked in her direction (at least right up until the last few minutes) she was deep in conversation.
Oh well, working from home tomorrow so I think that might start with a bit of a lie-in!
* Not that I’m denying that would help!
Tags: aches, arthritis, cold, flare, flare-up, joint pain, knee, knee cosy, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, stress, warm, weather
Oh crumbs – it’s snowing! You may remember that in my previous post I was winging about the cold the other day; well, it’s colder.
Yesterday the journey home was worse than I ever. I had a hectic day at work but I felt fine (if a little stressed) … and then I left the office to go home.
The moment my left knee found itself outside it started to complain, and the complaints got louder as I drove, to the point where I knew I wasn’t able to concentrate a hundred percent on my driving. Not good!
Although I get the ‘traditional’ sore and achy hands and feet of RA, the worst affected thing has always been my left knee, and if I have a flare that’s usually where it starts. This is the first year I’ve really noticed the cold affecting it though.
I’ve been trying to think of a way to keep that knee warm, specifically while driving. A lap blanket (Afghan in the US I believe) wouldn’t be safe, as it might slip into the foot-well and get tangled with my driving foot. (Fortunately, considering the sate of the left knee, I drive an automatic!)
I’ve decided the solution might be a ‘knee cosy’! I’m not quite sure yet how it would work. Perhaps a combination of a sports-style knee protector and a pouch that could incorporate one of those gel reusable hand-warmer type things?
I’m disappointed, but not surprised, to discover I’m not the first person (by a long, long way) to think up the neat ‘knee cosy’ moniker, but people are using it as a name for lap blankets, not for my cunning plan. I may have to make this my Christmas craft project!
Tags: aches, arthritis, R.A., recipe, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stiffness, weather, work
No, unfortunately I have not just come back from a spa break or something. The warm, spicy sauna was my kitchen a few hours ago, and very nice it was too, having come in from work absolutely freezing.
The trouble is, if you can call it a trouble, that I only live a couple of miles from work, so I get into my freezing car at the end of the day and arrive home frozen to the core ten minutes or so later, as the car hasn’t had time to warm up. No good for me or the car really! I definitely find joints stiffen more when they’re really cold, and I generally arrive home pretty achy at this time of year. Hubby, being the good sort he is, is usually there to provide warming hugs and coffee (unless he’s working late), but today I decided I needed something really warming for supper too.
So I made Polly Penguin’s Super-easy Vaguely Moroccan-inspired Chicken and Couscous, which always goes down well. Since this involves much froiling (a combination of boiling, broiling and frying, except that really it isn’t frying as I don’t use any extra fat) and lots of lovely warm-smelling spices, by the time I’d finished the kitchen was steamy and smelling like a spice market, and I was WARM! Even warmer when I’d eaten it.
If anyone else fancies turning their kitchen into a spicy sauna, here’s how, but I warn you it’s a bit vague as recipes go because I don’t tend to measure anything, including time!
Polly Penguin’s Super-easy Vaguely Moroccan-inspired Chicken and Couscous
Serves one penguin and one hubby
1 large onion
1 chicken breast (I’m sure Quorn would work equally well)
Half a can of tinned plum tomatoes
A couple of squirts of tomato purée
6-8 green cardamom pods
1/2 teaspoon of ginger
1/4 teaspoon of cinnamon
A generous grating of fresh nutmeg
Couscous – I like to cheat with a packet that’s got bits and bobs mixed into it
Dry stir fry the chicken over a fairly high heat, adding a little boiling water as necessary to stop it sticking to the pan. Add the onion and a bit more water and turn the heat down. Lightly crush the cardamom pods, and chuck these in along with the rest of the spices. Allow the onion to soften for five mins or so adding boiling water as necessary. Then chuck in half a can of tomatoes and allow to simmer on a medium to high heat until it’s reduced (i.e. a lot of the water from the tomatoes has boiled off) . Then turn down to a low heat and prepare the couscous as per instructions on pack. This generally involves waiting five minutes. Once the couscous is prepared and you’re waiting for it to be ready, add the tomato purée to the pan and stir in, which will thicken everything up beautifully.
Serve up and enjoy – and feel lovely and warm and, if like me you hardly ever cook properly, virtuous!
The whole thing only takes about half an hour from getting the onion out of the cupboard to serving up, so you don’t have to be on your feet for ages either … and there’s plenty of time in between for a quick sit down!
(I kinda spoilt the warming effect by following this up with a toffee ice cream … oops!)
Tags: arthritis, doctor, osteoporitic fractures, osteoporosis, R.A., RA, research, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
According to a study from the Mayo Clinic, women younger than 50 with rheumatoid arthritis are very significantly more at risk of sustaining osteoporotic fractures (for which you presumably have to have osteoporosis first) than women of a similar age who don’t have RA.
The article is somewhat confusing, as it also states ‘Young men with rheumatoid arthritis (RA) are also at an increased risk, but not until they are over age 50 years.’ Um … is it me? You can find the article here and make up your own minds.
I think what the researchers are saying, and what the article is trying to say but not very clearly, is that anyone with RA is more likely to have osteoporosis than those without this dratted disease, which is common knowledge amongst most rheumatoid arthritis patients, I suspect, but if you’re under 50 you’re much more likely to get it than those who don’t have RA. Cheerful thought for the day!
Oh well, forewarned is forearmed; don’t let your calcium levels go down! (Not actually sure what you do to stop ’em, except drink milk, and of course most doctors won’t be testing for it unless you’re over 50 … or 60 …) Perhaps that’s why more ‘young’ women actually sustain osteoporotic fractures – because it’s not until they have a fracture and wonder why that anyone realises they have osteoporosis? Cheerful thought number two!!
Off for a pint … of milk!
Tags: aches, arthritis, exercise, fatigue, fibromyalgia, joint pain, knee, neck pain, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stiffness, stress, tiredness, weather, work
Well more split Penguin really – my right side is ready to take on the world this morning, but my left side just wants to go back to bed with a hot-water-bottle (or perhaps Enormous Cat on hot-water-bottle duty). This is not my usual pattern – usually I have, for instance, a bad knee and a worse knee, or a pair of bad shoulders, but this morning everything on the right is fine but my left hand, elbow, shoulder and knee are all stiff and painful!
I rather suspect that this has as much to do with fibromyalgia than it does with RA, because although the knee and elbow feel joint-related the shoulder is definitely muscular … well, when I say definitely it’s actually hard to be sure I find, but it doesn’t feel like the usual rheumatoid arthritis pain. I’ve had a few problems in the last few days with it, having foolishly swung round to grab something behind me on Saturday and then found myself curled up in a ball on my chair going, ‘Ow, ooops, I really shouldn’t have done that’.* Unbelievably I then did exactly the same thing twice on Sunday! It’s such a dumb thing to do for someone who knows damn well they get problems in neck and shoulders! I blame the fact that they’d felt so good lately that I’ve been less aware of having to be careful … which I suppose is something I really can’t complain about.
Oh well, I have a mountain of work to get through today thanks to the over-enthusiasm of a colleague on Thursday who, forgetting I was on my own for the first half of the week, may have bitten off more work than we can chew, so I’m going to have to let the right side rule!
*This is the expurgated version
Tags: aches, arthritis, diagnosis, doctor, GP, joint pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, work
I met up with a friend yesterday who I haven’t seen for ages, in spite of the fact that we work in the same tiny town. It was great to see her but I was somewhat dismayed when she asked me about my arthritis and then told me that her husband seemed to be suffering from what appear to be RA symptoms too.
‘One of his fingers is permanently hooked now,’ she said, ‘and sometimes when he goes to open a jar or something he hand locks around it and I have to force the fingers open one by one. I hate doing that, it’s gross.’
My immediate reaction was something like ‘Aaaaaaaaaaaaarrrrrggghghhhggh!’ This was partly for the grossness and partly because you MUSTN’T do that. ‘Every time you force his hand open you’re damaging the joints more!’ I nearly screamed.
‘Well,’ says she with a shrug, ‘what else can we do?’
‘What treatment is he on for it?’
‘Oh he isn’t on any treatment. He’s not been to the doctor about it.’
Did I mention Aaaaaaaaaaaaarrrrrggghghhhggh?
Well … erm … that might be your answer about what else you can do about it then! Now I know some people don’t want to go on treatment and have some success with alternative therapy or diet, and the very best of luck to them, but he’s not doing that either. He’s just ignoring it and waiting for it to go away. What makes it worse is he has a very active, physical job and he really NEEDS to be able to do this stuff.
On reflection, perhaps that’s why he’s not going to the doctor – he’s terrified of being told that he shouldn’t/can’t carry on working, so he’s just trying to ignore it. I can kind of sympathise with that … but he’s still crazy if you ask me!
Tags: aches, flu, flu jab, GP, medicine, neck pain, NHS, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sniffles, sore throat
I have the post flu-jab sniffles, so presumably that means my immune system is going to respond and do its job in creating anti flu antibodies, which will be very handy if we have a flu epidemic this year … provided of course that it’s the ‘right’ flu. I had a slightly sore throat yesterday afternoon, post flu jab, and distinct sniffles this morning, but at least the big red lump on my arm is now a big red pinprick with a small red rash around it, and much less painful.
All more than worth it though if it keeps flu at bay! If the Flu Jab had a Facebook page I’d sign up to be its fan. (Oh lordy, perhaps it does … )