I have had very severe ankle pain since Thursday – but I don’t think it can be RA because it’s on the outside of my ankle. My anatomy is pretty poor but I’ve done some Google searches and some reading and I don’t think the outside ankle joint is a synovial joint – no synovial joint, presumably no RA? Could it just be a sprain? I don’t see how because I have no recollection of spraining it or going over on that ankle or anything, so I really don’t know what’s going on.
I have been pretty unsuccessful at keeping it up – I did keep it up for most of Friday and cancelled work and two different plans to see friends, but when it came to cancelling our wedding anniversary plans I … erm … forgive the fun … put my foot down! We had a lovely wedding anniversary lunch in Norwich on Saturday – but maybe pounding round the shops beforehand wasn’t such a great idea? Although having said that, we did buy a new bed, which is something that’s been on the list for quite a while and which could help with all these problems, since it’s always worst at night.
Now there’s a thing – I’d figured (until I started looking up ankles in Wikipedia etc.!) that it must be RA because it was either RA or osteo and osteo would be worse if I walked on it, not at night in bed … but now I’m thinking perhaps I’ve just sprained something.
Any thoughts to help out a confused Penguin would be much appreciated!
Of course, like the recent hip pain, I’ll be delighted it if it isn’t RA-related as I needn’t start panicking that the methotrexate isn’t doing its job!
Tags: ankle, bandage, combination pack, coolant, cooling, cooling liquid, evaporant, inflamation, inflamed, knee, knee pain, Physicool, seal, wrist
The nice folks at Physicool asked me to review their cooling bandage combination pack. I said I’d be very happy to do so provided they didn’t mind a completely honest review – and they kindly agreed and sent me a pack to try out. So here goes:
What is Physicool?
Physicool is a rapid evaporant which can be poured or sprayed onto their bandages. The liquid quickly evaporates into the air, drawing away the heat from the inflamed area and creating a cooling effect,
What is the combination pack?
The combination pack that Ian at Physicool sent me consists of a 3m long bandage and a 500 ml bottle of coolant. The bandage comes in its own small foil packet with coolant already applied, and that packet and the coolant bottle are packaged in another foil packet.
Opening the packs
On first use the seal along the top of both packages has to be torn off. My arthritis hands struggled slightly with the larger pack, but not much, and the smaller pack tore easily. Each pack is then sealed with a typical push-together plastic seal – not sure what those are called but you hopefully get the idea! These open easily.
Applying the bandage
The bandage has to first be squeezed to remove any excess evaporant, but it doesn’t need a very hard squeeze so that didn’t prove a challenge. I used the bandage on my knee – although I had a ‘size A’ bandage which is more appropriate for wrists, ankles etc. The knee was where I had the inflammation though, and actually the size was fine. The bandage is neatly rolled inside the bag and easy to unwind and apply. It has a velcro-style strip which can be attached to itself or to the bandage.
What I liked
- It works. It cooled the inflamed area really, REALLY fast and that meant the pain went away fast.
- The bandage is easy to apply.
- I only needed to use it for half an hour – after that I took off the bandage and my knee still felt really cool for another half an hour. But it should last for up to two hours – and it can then be re-charged and you can carry on using it.
- It’s portable. I use an ice pack normally but I can’t use that at work because we have no freezer in the building! This is something I can keep at work, and also take on holiday. Fantastic!
- The coolant supplied with the bandage should last for up to two hours of use – so I’ve got four applications in the bandage before I need to recharge.
- There should be enough coolant in the recharge bottle for around 8 more thirty-minute uses.
- The packs are quite easy to open and the bandage was easy to apply and it didn’t slip once I’d put it in place.
What I didn’t like
- It’s wet. Well, it would have to be of course, because if it wasn’t it wouldn’t evaporate! However, because it is a rapid evaporant it doesn’t feel wet for long.
- It has a smell. It’s not a bad smell, but it’s definitely a smell. No smell at all would be perfect, but if it has to smell this isn’t a particularly unpleasant one – just very slightly hospitally!
- It needs to be exposed to the air to work effectively – otherwise it can’t evaporate so well, of course. This means that whichever bit of you is using the bandage has to be uncovered. Not a problem if you want it to be cool, you may think, but what if the knee’s the problem and the only way to ‘expose it’ is to roll up your trousers? that leaves you with a cold ankle and calf.
- Because it needs to be exposed to the air, when I used it on my knee and then put my leg up, the underneath part was against my footrest, not exposed to the air. This meant I had a wet patch for a while under my leg after I took the bandage off. It did evaporate though!
Do the benefits outweigh the irritations?
DEFINITELY! Now that I know what the ‘problems’ are for me, I can work around most of them. I can make sure I have a small blanket to cover any bits I don’t want exposed, and if I put my leg up, for instance, I can put it on a foot stool and leave the actually knee unsupported to avoid a wet patch. As to the smell and the temporary wetness – considering how incredibly effective this is at cooling the painful area – I can live with those.
Want to know more?
Tags: blood, blood test, GP, phlebotomist, Rheumatoid arthritis, rheumatology, rheumatology nurse, surgery
I mentioned to the facilities manager as I left work this morning that I was off for a blood test. When I saw him later he asked, ‘So did they manage to confirm you had blood then?’ Well – actually it was a bit of a struggle! The first attempt to prove I had blood was a dismal failure – in went the needle, out came … nothing. The rhuemy nurse waggled the needle about – nothing happened … except that it hurt … she waggled it about some more … OUCH! We mutually agreed that perhaps trying another spot would be better. It wasn’t. Hmm … I’d walked in rapidly and everything, the blood should have been flowing … but perhaps the problem was that it had all rushed to my head a moment before!
‘Why would it do that?’ I hear you cry. Because she’d just told me that the system of monthly blood tests was changing – in fact it was going. The new guidelines from the hospital are that we only need three-monthly blood tests done by the rheumy nurse. Well OK … that’s fine by me… but here’s the rub.
At the moment I go in for my blood test, have a chat about my arthritis and general health, query anything that’s bothering me rhuemy-wise (usually not a lot, ’cause I’m lucky most of the time!) and book the next appointment. Now the appointment times are being reduced, so I will only see her every three months and have less time for a chat about how things are going because she will have less time per patient, even though she’s not seen us for three months. On top of that – she can no longer book the next appointment – because, mind-bogglingly, ‘the system’ won’t allow booking three months ahead!
I do wonder how much this has to do with the computer system and how much it has to do with the fact that the further in advance appointments are booked, statistically the more patients are likely to fail to attend! So now, instead of a simple month-by-month process of blood tests and booking, I have to remember to do an extra thing – phone about three weeks before my next test is due and book it.
Well, that’s not so bad – after all it’s only three-monthly, isn’t it? I’m still spending less time than I was before attending monthly? Not so fast … I am also supposed to attend in the two intervening months for a 2.5 minute appointment with a phlebotomist, who will just have time to say ‘Hi’, take the blood and throw me out again – but on top of that, that won’t even be an appointment but a ‘walk in’. So if they’re not busy (hah, what are the chances of that, especially as I happen to know they’re short staffed) I could get seen straight away, but if they are busy I could be waiting who knows how long.
I told my nurse I would probably simply not bother attending the phlebotomy walk-ins and she said she thought I would not be alone – she’d heard the same from a number of patients! Of course you could say, and quite rightly, that we’re putting our own health at risk doing that and the service is there … but in six years I’ve never had a blood issue, and I do have a full-time job and I don’t have time to sit about for an hour waiting for a blood test, so … we’ll see.
Anyway, back to today’s blood test – when she scraped me off the ceiling and calmed me down and got the blood flowing round the body again, she was finally able to draw blood … which, I hope, will be fine as usual!
Tags: aches, arthritis, doctor, joint pain, knee, methotrexate, MTX, NHS, nurse, pain, physical therapy, physio, physiotherapy, R.A., RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stiffness, tiredness, work
I’ve just been to see my GP about a very painful hip that’s been bothering me for about four weeks now and getting worse rather than better. (There’s little point in going until one is a few weeks into the pain as they just say ‘Come back if it’s not better in a few weeks’ if you do that!) I had been getting rather low thinking that the methotrexate increase wasn’t working – but in the back of mind I was wondering if it was arthritis at all. When I saw my rheumy nurse for the monthly blood test a couple of weeks ago I mentioned the hip pain and said, ‘Honestly, I don’t think it’s arthritis – I have plenty of movement in that hip. I could dance the can-can if I had the legs for it!’
Still, it’s funny how one’s mind can almost split into two on things like this; (well, my mind can, anyway). One part of me was thinking ‘Of course it’s not arthritis’ while the other part was thinking, ‘Doom, gloom, despair! My methotrexate increase hasn’t worked – there aren’t many options open to me if it doesn’t … will I end up in a wheelchair?’
Anyway, I saw the doc today and she confirmed that it’s NOT arthritis (or at least very unlikely to be, anyway) – far too much movement in the hip. She has referred me for physio for a dodgy ligament (technical term, that!) but the chances are, she thinks, that it’ll clear up in another few weeks by itself – so I’ll just cancel the appointment, because that’ll probably take three months to come through anyway!
The hip pain (and associated other pains including referred pain in the knee) has been making my life a misery and continues to do so. I have to limit the driving I do because it’s incredibly painful – it also affects work, but I’m very very happy it’s (almost certainly) not arthritis … though I would like to know what on earth caused the ligament to get upset because I haven’t done anything to it!
Tags: aches, arthritis, canadian smocking, cats, cholesterol, coffee, crochet, decafinated, doctor, embroidery, GP, methotrexate, pains, Rheumatoid arthritis, Spanish
Well, I’ve been very remiss posting lately, I must say … so prepare for a very long and rambling post – perhaps I’ll put headings on so you can skip to the bits that you might find interesting! A combination of being very busy and yo-yo health – but fortunately, mostly busyness.
Anyone remember the game ‘fortunately, unfortunately’ where you’d take it turns to make sentences beginning with either fortunately or unfortunately, to make up a story? Well I was wondering whether to write an entire blog post like that, as my life seems to fit that pattern quite well right now – but thought it might get tedious, for you and me! Here’s an example though in case you have no idea what I mean:
Fortunately I have been doing a lot of fun things lately.
Unfortunately doing a lot of fun things is rather exhausting.
Fortunately I am, on the whole, sleeping quite well.
Unfortunately my Spanish teacher forgot I only drink decaf coffee and made me two fully ‘cafinated’ coffees last week, and I had a terrible night’s sleep (or lack of it) trying to climb down off the ceiling.
So – here we go with the update on the health front: About three weeks after my methotrexate increase in May I started to feel much better – go methotrexate! All those ‘regular’ niggly aches in my hands and feet were spirited away – I was still getting twinges and some knee pain (my knees probably being the worst affected bits of me) but no stiffness and none of that constant, nagging, draining pain. Hurrah! Unfortunately … sorry, just slipped into it there … it’s now about twelve weeks later and I’m feeling really pretty rotten. If you’re reading this then the chances are that I don’t need to describe that rotten feeling – you either know it only too well or you probably know me and I’ve moaned at you enough already – so suffice it to say I’m just not feeling good!
I’m hoping, and thinking it most likely, that it’s a temporary blip rather than that the methotrexate is ALREADY not doing the job.
On top of that I had my annual cholesterol test recently … hmm … suffice it to say I am now SERIOUSLY on a diet! :-( It’s very boring – actually that’s not really true – there’s a lot of GREAT and tasty food out there that’s fine for dieting, including much delicious fruit – but remember being a kid and having plenty of toys and games and friends, but you’re BORED and you DON’T WANT ANY OF THOSE? Well that’s how I feel right now about peipono melon and strawberries and lovely home-grown courgettes (zucchini) and all the other apparently delicious things in the fridge! I want caaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaake! But fortunately (sorry!) the weight is coming off so that’s encouraging me to avoid the cake and stick to the melon! Also I do NOT want to be on Statins at 46!!
And so to cats – it’s been absolutely ages since I mentioned my cats (or indeed my poor hubby, but he might have to wait for another post!) They are still, of course, a central part of my life (as are you hubby-dear, before you read this and complain) and in fact we may have to rename Enormous Cat as Mr. Handsome, as he has dieted (or perhaps I should say we have dieted him?) way more successfully than his penguin, so far. I should get encouragement from him – he’s ten years younger in sprightliness and joi de vivre, although (like me) he does complain loudly that he’s hungry sometimes! And Tiny Cat 2 has really come on – she’s gone from being a practically feral scardeycat to a real member of the family – she’s even been known to sit on my lap for twenty minute at a time and stay quite happily curled up next to hubby when he’s sat down beside her. (Not often – but increasingly.)
Having fun (and occasionally working)
So … the rest of life: I had a lovely visit a few weeks ago to Bro and SIL’s new(ish) house in the Midlands – and we’ve visited some other friends and had some friends visit us; Hubby and I have been doing quite a bit of wildlife surveying which is fun; I’ve been doing a lot of crochet, trying to get something ready for a competition but I fear it’s NOT going to be close to ready - but on the bright side I did get third prize in our local show for my crocheted St. Edwards Crown last month, so that was nice. I have also been trying out ‘Canadian smocking’ which is fun. Just small samples so far, practising on an old gingham curtain, because that way I don’t have to mark out squares on the fabric! I have a cunning plan for a clutch bag based on this technique – but no hurry … and the Spanish is coming on nicely – although to be honest I can understand my Spanish teacher fairly well but plonk me down in Barcelona and ask me to translate and I’m sure I still couldn’t understand a word! Still – getting better! And in amongst all this fun, fun, fun – work has, thank goodness, picked up lately, so we’re busy there too. No wonder I’m tired!
Phew – sorry that was so rambly – I’m off for a lie down now … although Mr Handsome is trying to persuade me to feed him instead.
Tags: arthritis, consultant, diagnosis, doctor, flare, flare-up, hospital, knee, methotrexate, MTX, NHS, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
So I’m increasing my methotrexate. Flippers crossed that all will go well, I won’t get any nasty side effects (except maybe appetite loss, which would actually be a great benefit!) and it’ll keep my disease in control for at least another five years … but what if it doesn’t?
Well I asked my consultant this at my last appointment. He’d said, ‘I’m happy to increase your methotrexate to 17.5 and then to 20 but after that we’ll have to start considering other things if that isn’t doing the trick’.
So I asked him point blank what other things? ‘Oh’ he said airily, ‘there are lots of other things available.’ Well it’s now or never I thought and said what’s been on my mind for a while: ‘I know about biologics, but I won’t qualify for them on the NHS, will I?’ He looked a bit startled and then had to admit that no, I didn’t stand a chance. With my fabulous blood results that never show anything wrong, I’ve got no chance of being offered them at all at the moment.
So … where would I go if the methotrexate doesn’t work or causes problems? Well, I can add sulfasalazine to the mix and see if that does any good. ‘Some people are on three DMARDs’ said the consultant, but even he didn’t sound really convinced about it.
So what it boils down to is that with the usual NHS foresight, if the methotrexate increase doesn’t work and then the sulfasalazine doesn’t work, I would have to wait until I was in a really bad way, unable to work, probably unable to walk (given that feet and knee are the worst bits of me) before they’d even deign to consider me for other treatments. As usual, let’s not make the effort to keep people OK and working – let’s wait until they’re falling apart before helping, even though surely doing it that backwards way doubtless ends up costing ‘the system’ more in the end!
Well, back to crossing those flippers and hoping it never comes to that!
Well I had my annual appointment today with the consultant. He was running nearly two hours late, but I couldn’t complain; if I need that sort of time one day, I’ll want him to spend it on me, so I can’t complain when someone else needs his time and he gives it to them.
Having said that, I did get chatting to another patient over the tea and biccies they bring when they’re running outrageously late, and we ended up talking about Mr Consultant. ‘Is it just me,’ says I, ‘or does he always seem really bored?’
‘Oh my, yes,’ my new friend replied, ‘and he always talks at the notes or the dictaphone, not at you.’
We carried on in this vein for a while, and then talked of other things. It made the time go so much faster having someone to chat to, and luckily for me she was next in line after me, so I could chat to her right up until I was called in.
So I went in expecting a bored and fed up Mr Consultant to glance and me and start chatting to his dictaphone, but no such thing. Just like the experience I had with the nurse six months ago, it was as though he’d had a personality transplant. He was charm itself. We talked through my issues, and instead of saying ‘Well, the bloods are fine, go away and stop bothering me’* he listened carefully as I told him about the various flares in the last six months, examined me, and agreed that if I had had flares and needed steroids, clearly my disease was not fully controlled.
The upshot of it is that my methotrexate dose is increasing to 17.5 mg and we’ll see how we go from there.
I was able to tell my buddy on the way out that she needn’t worry, Mr Consultant was in a good mood today; I just hope she found the same!
* Not that he’s ever been that blunt, it just feels that way!
Tags: arthritis, fractures, osteoarthritis, osteoporosis, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
You know, when I was first diagnosed with rheumatoid arthritis six years ago, when I was 39, comments like that used to really annoy me. I lost count of the number of people who said things like ‘Oh, aren’t you a bit young for that? My granny has that. She’s lost some weight lately though and feels so much better.’
‘Why do people have to make dumb comments like that?’ I’d wonder. So I’d try educating them – I’d patiently explain that what I had was rheumatoid arthritis, an autoimmune disease where my body has decided it’s a neat idea to attack its own joints, whereas what their granny had was probably osteoarthritis.
My favourite response to that was ‘Oh no – she had a big bowl of cereal every day and had really strong bones.’ So I then had to explain that osteoarthritis was ‘wear and tear’ arthritis, and what they were thinking of with the milk was osteoporosis, which is a reduction in bone density that can lead to fractures amongst other things, and which can (maybe … sometimes) be avoided by a good calcium intake.
Usually, with a few deep breaths and counts to ten, I would manage an explanation that convinced them that granny and I didn’t have the same thing – but it did used to drive me nuts.
Now, seven years on, I’m 45, overweight, look 50 on a bad day, and nobody says ‘Aren’t you too young for that?’ any more.
I kind of miss it.
Tags: autoimmune, autoimmune arthritis, autoimmune diseases, booths, free register, health, IAAM, medicine, Register Free, virtual convention, WAAD, World Autoimmune Arthritis Day
World Autoimmune Arthritis Day – yes, it really is global, because it’s also virtual. All you need is an internet connection, and it’s FREE.
REGISTER for FREE to attend World Autoimmune Arthritis Day’s 2013 Virtual Convention, here: http://worldautoimmunearthritisday.org/expo/
World Autoimmune Arthritis Day is an annual 47-hour event where nonprofits, advocates, and experts from around the world unite in order to provide educational and awareness information to patients, their supporters, and the general public.
If you ‘attended’ in 2012, which was a great event, this one should be even bigger and better, with Nonprofit Booths, Vendors, a Raffle and a special feature: A Day in the Life with Autoimmune Arthritis (an Apple/Android app and Exhibit Booth).
It starts at 11am British Summer time or 6am ET/USA on May 19th and ends at 10am British Summer Time or 5 am ET/USA May 21st, 2013. It is an interactive, LIVE, Virtual Convention that you can attend for FREE…just find an internet connection and join the rest of the world for 47 hours of education and fun!
Thank you to Eileen from Italy for commenting on my last (winging) post, and suggesting that I might be vitamin D deficient, as this could well be a major factor in season affective disorder (SAD). I don’t actually think I suffer from SAD – I was just having a low mood day, and these are rare; however, I started to look into vitamin D and came up with some interesting stuff I thought I’d share.
What is vitamin D for?
Vitamin D is used by the body to absorb phosphorous and calcium from food, and we use calcium and phosphorous to make healthy bone. In children a lack of vitamin D can lead to rickets and in adults it can cause osteomalacia, a softening of the bones leading to pain and tenderness in bone and muscles. It has also been suggested, as Eileen mentioned, that it could be a contributing factor to SAD.
Where does vitamin D come from?
We create vitamin D using direct sunlight on our skin – hmm, there’s been a bit of a lack of that round here lately!
Vitamin D doesn’t just come from sunshine though. You can also find it in oily fish (which includes mackerel, salmon, trout, sardines, herring and anchovies and tuna but not tinned tuna apparently, as the canning process alters its content of oil.) Hmm … I really like salmon and sardines but hardly ever eat them. I eat a fair bit of tinned tuna, but that doesn’t help!
So where else could I get it from? Eggs – nope, very rarely eat eggs. (Perhaps that’s something to do with being a Penguin?) Spreads that have been fortified – erm, nope, hardly ever use spread on anything. Some fortified breakfast cerials – YES! So I checked out my cerials – a 30g portion gives you 25% of the recommended daily allowance (RDA). Hmm, well I’m trying to lose weight, so I try to have a bit less than 30g so I’m not even getting that 25%.
Anyway, according to this NHS article it’s hard to get it from food alone, and there definitely has been a lack of sun over the last year!
Who’s at risk
Apparently, according to the NHS and Department of Health a number of people are at risk of vitamin D deficiency in the UK and according to this report in The Telegraph vitamin D deficiency is becoming a very significant problem in children.
Adults at risk, and who should probably take supplements, are: “pregnant and breastfeeding women, especially teenagers and young women; people aged 65 years and over;
- people who have low or no exposure to the sun, for example those who cover their skin for cultural reasons, who are housebound or confined indoors for long periods;
- people who have darker skin, for example people of African, African-Caribbean and South Asian origin, because their bodies are not able to make as much vitamin D.” Well I don’t fall into any of those categories in theory, but I’ve been virtually house or office-bound for the last few months due to various flares combined with appalling weather! Also there are a number of studies, including this one suggesting that obesity leads to vitamin D deficiency. Well, I’m not obese but I’m certainly overweight and the study I’ve just linked to shows that deficiency increases in proportion to BMI increase. So … it’s not looking to good for me right now!
What to do?
It is possible to get a blood test to see what the vitamin D levels are doing, but frankly I really doubt that my cash-strapped GPs would be interested in doing one! I could pay for one – or I could just think ‘Hey, this makes sense’ and take a supplement. I’ve opted for the latter.
A word of warning about supplements
Hubby and I popped down to the chemist yesterday and had a look at the vast range of supplements available. I was really shocked to discover that even the lowest doses of vitamin D supplement were way, way higher than the RDA. This is probably because, as sensibly suggested by hubby, they’re meant as a boost for people who have really low vitamin D, but since I don’t know where I am level-wise I thought taking the lowest does of vitamin D only supplement, which was 250% of the RDA, still seemed dodgy. So I’ve settled for multivitamins. Even they contain 10o% of RDA of various things including D, but I thought OK, if I’m getting a bit more than 100% it probably doesn’t matter – but 250, 500, 1000% – just seemed a bit crazy.
The danger of a vitamin D ‘overdose’
Vitamin D is not an example of ‘you can’t have too much of a good thing!’ If you have much too much then you can absorb too much calcium, and that can lead to it being deposited in places you really don’t want it – like the kidneys. Excess of vitamin D can also cause calcium to be removed from the bones (don’t ask me why!), which again is not something one wants!
Feeling tons better today – I doubt that relates to two-days-worth of multivitamins (because I don’t think they’ll have kicked in yet), but I suspect it could have a lot to do with two days of sunshine, some warmth in the air, a couple of walks (the first proper walks of the year) and some gardening!