A bit of an update – I can’t believe it’s been so long!

October 15, 2014 at 1:35 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 3 Comments
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I can’t believe I haven’t posted since June. I wish I could say that that’s because I had nothing, RA-wise, to post about, but that wouldn’t be strictly true. In fact throughout June, July and August I probably did have ALMOST nothing to post about, but, although I’ve kept off those dratted antiinflmmatatories, things aren’t quite so hot now.

It’s just little niggly things at the moment – niggly knees mostly, as it always is with me, plus waking up in the night and finding my right-hand index finger is very stiff and very painful. I have a horrible feeling this relates to my increase in crocheting lately, and I’m wondering if I’ll be able to complete my Diploma in Crochet … although thankfully there’s no time limit so if it takes me a week to crochet a 4″ square, so be it!

And talking of crafts, I’ve just been to the Knitting and Stitching Show at Alexander Palace – a 3.5 hour journey there, mostly by coach, a 4 hour journey back (due to the coach almost breaking down but managing to limp to our drop-off point in the end!) and a loooong day browsing the exhibitions (so-so), trade stands (fabulous yearly treat for a rural type with few local craft shops!) and enjoying a workshop too (Dorset button making). We went on the Friday and it knocked me FLAT for the rest of the weekend but it was worth it!

I also had my hospital appointment not long ago. To my astonishment it went very well – they called us in individually, so again we didn’t have to line up like ducklings behind the mother-duck nurse, and there was a new rheumy nurse there (well, new to me, and young) who was absolutely delightful – she hasn’t had the soft, caring side knocked out of her by working too long for too little and too many hours at a time … yet. She was very sympathetic and very helpful about the knees, which were playing up at the time, although more from the medical (go on, have them drained, it’s not that bad – hah, like she’d know!) side than the practical ‘help yourself’ side of exercises, cold compresses etc. And thereby lies, in my non-expert opinion, one of the biggest problems with any giant organisation such as the NHS. It’s inevitable that everyone has their own specialties, but they do tend to get siloed. She didn’t offer me physio – but then again … I didn’t ask. In all honesty I didn’t feel I needed it, and perhaps neither did she! I know how to manage the low-level pain now – sometimes I may need reminding, being a dopey penguin, but I do know!

And that lack of ‘joined up thinking’ leads to the next thing – I got a letter recently asking me to ring the surgery to discuss ‘some blood results from the hospital’. Slightly worrying that – especially as it arrived on a Thursday, I didn’t get it until Thursday night and I was off to London on Friday, so couldn’t ring until Monday. Anyway, I rang on Monday. ‘Oh’ says the doc. ‘They want us to check your cholesterol risk.’ And ‘quite right too’ I hear you say. ‘You’re overweight and you should do something about it and they’re right to be vigilant.’ Well, yes, but here’s the thing … the surgery themselves had just checked my cholesterol about three weeks before and established that I was low risk.

If the nurse at the hospital had asked me about it, instead of sending me off for bloods and not even telling me she was checking that, I could have said, ‘They’ve just done that at the surgery. This is my level, I’m apparently low risk.’ Instead, lovely as she was, she wasted the following resources:

  • A blood sucker (aka phlebotomist)
  • The lab doing the work on the cholesterol
  • The hospital secretary
  • The surgery secretary who sent out the letter
  • The GP who had to call me back and discuss what we’d discussed three weeks before

‘Joined up thinking’ is no longer the buzz phrase of the day, and it sadly didn’t work when it was, but a little bit more of it would be a wonderful thing.

On mended knee

June 22, 2014 at 8:57 pm | Posted in Me, rheumatoid arthritis (RA) | 3 Comments
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Eye Church from the Pennings Nature Reserve

Eye Church from the Pennings Nature Reserve

Thanks for all the comments. Well, we made it back today, and successfully collected the fabric. (If you have no idea what I’m talking about then you’ll need to read the previous post!) Run4Joy – not sure about ‘spry’, the knee isn’t perfect … in fact neither knee is as good as it was a couple of days ago, but both are much, much better than yesterday!

Maggie, good point! We made it back and this time we got to the nature reserve – and very lovely (and flat) it was too. You can’t see in the picture above but between us and the church there’s a lovely river (the River Dove), teaming with damselflies and dragonflies. Most of the (very small) reserve is a wild flower meadow, so a jolly nice place to visit in the summer!

Carla, I’m sure you’re right – I had been overdoing it, so we had a very short and leisurely walk around the reserve and then headed back home and put our feet up. Poor Hubby, having done all the driving two days running … not to mention the drive up to the coast on Friday night for a walk around Cromer, Blakeney and Wells (did I mention I might have overdone it lately?), was more in need of a feet up afternoon than I was!

Cutting back on the tabs!

June 13, 2014 at 10:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 9 Comments
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You may have noticed I haven’t actually said anything much about my RA for a while … well that’s because it’s not really affecting me in a big way, and hasn’t been for a while. And yes – I do appreciate how bloomin’ lucky I am!

I saw my consultant the other day and for once we were in agreement – things are going well both from his point of view (bloods and 2-second examination) and mine (how I actually feel). These two things rarely combine but this time they did, and what’s more, six months ago when I saw the nurse things were going well too, so we’ve made the decision to cut back on the tablets.

I must say I felt awfully brave doing that … still do actually, it’s scary how dependent one gets on the comfort of knowing that if you keep taking the tablets things are mostly OK. It’s only the anti-inflammatories that I’m cutting back on at the moment, and the idea is that if that goes OK I’ll step down my methotrexate next time I see him. In fact, I’ve cut out the anti-inflammatories altogether for five days so far and things are going well. Apart from the odd twinges in my bad knee and occasional mild stiffness and achiness if I wake up after a cold night, I’ve had very little indication that they were making any difference. Unlike the methotraxate, there was no build-up with the anti-inflams I was taking, so the good news is that I can cut them out for the moment but if I have a flare, or just a bad, achy day, I can take one whenever I need to.

Of course we’ve had five days of glorious sunshine and DRYNESS – which I’m convinced makes a difference, so we’ll have to wait and see how things go when that stops – and given it’s the weekend that will probably stop tomorrow! Watch this space! I’m really hopeful though that things will carry on going well and I can reduce the methotrexate in six months’ time!

A day (or two) in my life with RA

March 23, 2014 at 9:58 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 19 Comments
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This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” I hope I’m not cheating, but I’m going to describe two days – one just post diagnosis and one post-“control” where I am now!

4:00 am A day in March 2008

Wake up hurting – everything’s hurting. My neck and shoulders are very stiff, my back aches, my feet are killing me, one arm is numb and the other has pins and needles going from shoulder to finger-tips – but oddly only the little and ring finger.

Worry – a lot. Come on, I was diagnosed as ‘likely’ are in November last year, and definitely in February  – so how come it’s still not sorted. OMG, what if it never does get sorted? Am I going to end up a wheelchair? Will I cope? Will hubby cope?

And where the heck is that physio appointment they promised me months ago?

4:00 am A day in March 2014

Zzzzzzzzzzzzzzz…..

7:00 am March 2008

Wake up feeling completely un-refreshed and cursing myself for having spent an hour in the middle of the night worrying instead of sleeping. Worry some more as I creak my way gradually out of bed, gently testing bits of me to see how mobile they are. The relief of shaking off the pins and needles and then plunging my hands into warm water is enormous.

7:00 am March 2014

Wake up, blinking the ‘sleep’ out of my eyes. Slight stiffness. Hubby draws the curtains and says, ‘How’s the Penguin?’ ‘Stiff and achy,’ I reply, but then I realise that this is nothing to how it felt a few years ago, really NOTHING, and instantly feel a bit better.

7:30 am March 2008

Take a hydroxychloroquine and a diclofenac and wonder if they’re helping or not. I know I have to wait another couple of months to find out. It’s frustrating!

7:30 am March 2014

Take a hydroxychloroquine and an ‘arcoxia’ cox-2 inhibitor. I had to stop taking the diclofenac eventually after a nasty stomach upset – the arcoxia are supposed to much worse for the stomach, but so far don’t seem to be worrying mine!

8:00 am March 2008

The stiffness is just starting to think about wearing off. My left knee is very swollen and I hobble out to my car using a stick, to head off to work. I’m wondering how I’ll make it through a whole day!

8:00 am March 2014

Stiffness? What stiffness? Did I say I was stiff and achy this morning? Heavens! I’d forgotten. That wore off in about ten minutes.

9:00 am March 2008

Work  – chat to colleague – drink strong coffee – work some more. Try to remember to MOVE because otherwise I freeze into place and struggle to get out of my chair when I need to later.

9:00 am March 2014

Work – chat to colleagues – drink decaffeinated coffee (this change has nothing to do with the RA, but I have rosacea and the symptoms of that are drastically decreased by drinking only decaf coffee rather than ‘caffeinated’), work some more. Move when I want to – it’s not a particular issue any more.

12:00 pm March 2008

Strewth I’m stiff – I got a bit too involved in some interesting work and haven’t moved out of my chair for an hour. Now I’m in the embarrassing situation of needing a ‘comfort break’ rather urgently and thinking it’s going to take me five minutes to un-stiffen enough to get there!

Time for the next diclofenac. Oh no! I’ve left them at home! Mad dash home in the car to get one, and then back to work.

12:00 pm March 2014

Lunch time – get up, stretch a bit, possibly say ‘creak’, which makes my ‘Junior Penguin’ colleagues chuckle, but really I’m quite mobile. Grab a bit of lunch and go for a mile walk – I know it should be longer … and faster … but it’s about what I can manage comfortably in the time I can spare and my knees aren’t right, though much better than they were a few years ago.

Happily no lunch-time tablets any-more – as life-style changes go, this one has had a surprising amount of impact ! I’d really hate to have to go back to trying to remember lunch-time tablets again!

3:00 pm March 2008

Really wondering if I can last until five. If I was on my own I’d be out of here – but I’ve got an employee now and I feel I should set a good example so I stay.

3:00 pm March 2014

Wow – I love this job – time for a bit of a coffee break and then back to some really interesting transcription about language usage … followed, for a bit of a change, by some transcription about sheep diseases! Variety – that’s what I love!

5:00 pm March 2008

‘I’m tired and I wanna go home’ but we’re really busy and I’ve promised someone to get some work back to them this week – I’d better stay a bit longer, even though I feel soooooo tired and achy!

5:00 pm March 2014

I’m outa here – life’s too short! My way of working these days is to delegate or subcontract what I can’t fit in between 8am and 5pm Monday to Friday. I’ve got about 15 hobbies (and one hubby… and friends) and I want time to enjoy them all… especially as, let’s be honest, I don’t know how long I’ll be able to carry on with some of my hobbies, especially those involving a lot of walking or using my hands! I don’t feel negative about it though – things are going well at the moment and I’m making the most of my free time!

6:00 pm March 2008

Still at work.

6:00 pm March 2014

Just leaving a friend’s house. I’ve popped round for a post-work chat and coffee. Feeling pretty fine.

7:30 pm March 2008

Just about manage to get some supper on the table. I only arrived home half an hour ago so it’s ‘oven fish and chips’. 7.5g of methotrexate tonight, with another diclofenac, another hydroxychloroquine and a lansoprazole (stomach settling tablet).

7:30 pm March 2014

We’ve eaten already – I like to eat early and have the evening to play in – especially as I’m usually in bed by 9:00 pm these days – I find an early night makes a huge difference to my general well-being.

Tablets were 17.5g of methotrexate (yeah, it’s gone up a lot but I don’t care – it’s working, and there’s still room for it to go up a bit more … although I do worry sometimes about what happens if/when I’m up to 25g and there’s nowhere else to go  because my symptoms are too mild to get anti-TNFs etc. on the NHS!), and another hydroxychloroquine and a lansoprazole.

9:00 pm March 2008

Getting ready for bed – head still buzzing with what’s happening at work, worries about health, worries that I’m not finding time to do the things I love and speak to the people I love, worries, worries, worries. Heaven knows when I’ll get to sleep. Read a book for a bit to try to take my mind of it.

9:00 pm March 2014

In bed sipping a cup of decaf coffee that hubby’s just made me. Feeling satisfied that I’ve done a bit of Spanish ‘homework’ and managed quite a chunk of embroidery and a bit of crochet this evening, while watching an interesting documentary on the telly and discussing it with hubby later in some depth. Reading a good book on my iPad and feeling very relaxed.

10:00 pm March 2008

Oh no – I really don’t feel sleepy. I’ll read some more and try to relax. ‘Come on Penguin – light’s out’ says Hubby. ‘Just another five minutes’ I say, knowing he’ll be asleep in four and I can carry on reading!

10:00 pm March 2014

Zzzzzzzzzzzzzzzzzz…..

11:00 pm March 2008

Better put the light out. Toss, turn, toss, turn.

11:00 pm March 2014

Zzzzzzzzzzzzzzzzzz…

1:00 am March 2008

At last  … zzzzzzzzzzzz…..

1:00 am March 2014

Zzzzzzzzzzzz…

2:00 am March 2014

Wake up – stiff, in pain, pins and needles – wriggle about until I feel vaguely comfortable, lie awake for 20 minutes and eventually drift off to sleep.

2:00 am March 2014

Wake up – roll over – zzzzzzzzzzz…………….

And so another day starts in the life of Pollyanna Penguin …

Hip hip hooray!

August 13, 2013 at 8:45 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
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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!

 

Update – RA, Cholesterol, Cats, Life etc.

August 10, 2013 at 10:15 am | Posted in rheumatoid arthritis (RA) | 3 Comments
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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.

Fortunately/unfortunately

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.

Etc. etc. 

Health

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. 

Cholesterol

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!!

Cats

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.

Vitamin D-tail – a guest blog from Eileen in Italy

April 12, 2013 at 10:44 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai | 1 Comment
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I’m calling this Vitamin D-tail because it’s vitamin D in detail. I suppose it could have been Vitamin D-tale – the tale of vitamin D, but anyway, after my rambling and vague post about Vitamin D, Eileen in Italy posted a rather long comment, which I suggested we expand into a guest post, and here it is.

Eileen is a graduate of physiology and worked in the NHS before moving abroad. She has polymyalgia rheumatica, and spends a lot of her time making medical stuff comprehensible for other sufferers. As you will see below, she has a knack for this!

Vitamin D – you’ll probably have seen a lot in the media over the last few months. You might even have asked your doctor about it and probably got a dismissive “You get all you need from diet and sun and it isn’t important.” In the words of the song: “that ain’t necessarily so!”

What is Vitamin D?

Vitamin D isn’t really a vitamin – it is something called a pro-hormone and is made in the skin by the action of the sun’s rays on cholesterol and stored in the liver to be used to make a variety of different hormones. It is very important for the way the body uses calcium – without enough vit D you may have a low level of calcium in your blood and, in the long term, you may not build bone properly.

Why do we need it?

The original importance of vit D was seen as preventing rickets in children and it helps prevent osteoporosis in adults. However – that isn’t all: it is now thought that it is involved in many processes in the body and being deficient can give you aches and pains in your muscles and joints and contribute to depression and may be particularly significant in autoimmune disorders. More and more research is suggesting, too, that the amount we need is really much higher than what they have been saying for years.

Where do we get it from?

Many GPs still believe you get vit D from food – in fact you get less than 10% of even the amount they say you need in food. It is found in oily fish, salmon, mackerel, herring, tuna, for example. It is highest in wild fish – and even then you would need half a pound of salmon every day to get what you need – but much lower in farmed fish so you would need more. Tinned tuna in oil has far less than fresh – and the “healthy” version in water has almost none left because of the canning process. Other than that you could have a 17 egg omelette for lunch, or a couple of kilos of mushrooms. When you see in an article that “fortified” foods provide vit D that mainly applies for the USA where milk, orange juice and cereals have vit D added to them. Not so in the UK where margarine is described as fortified – but only so that it has the same amount of vit D as butter!  The food with the highest level of vit D is fish oils – maybe great grandma knew something when she got the bottle and spoon out! But you must not rely on cod liver oil – it also has a lot of vitamin A in it and that is dangerous if you take too much.

The main way to get enough is being out in the sun: about 20% of your skin needs to be exposed to the sun between about 11am and 3pm in order to be able to manufacture enough. But there are problems with this in the modern world and living in northern climes. The skin factory is most efficient at the age of 20, from then on it starts to slow down gradually anyway until at age 70 it is at less than 25% capacity. As you get older, you wear more clothes and spend more time indoors during the middle of the day doing boring things like work, looking at that lovely sunshine through the window – which blocks the essential wavelengths of light. When you do go out you use sunscreen – many foundations now contain Factor 15 and even Factor 8 sunscreen reduces the amount made by over 90%. And we have had it drummed into us that we shouldn’t go out in the midday sun and always “slip, slap, slop”. Anyone living north of Turin in northern Italy is so far from the equator that between October and May they won’t make enough vit D from the sun – the sun’s rays have to strike your skin at a high angle to flick the switch to turn the machine on, once your shadow is longer than you are tall – the sun isn’t strong enough. The further you are north, the less you make. So that means that you have to store it up between May and September – and then you get a summer like last year! In children, all this is added to by the fear of letting children out to play and their desire to play on computers rather than on the swings. And if you have dark skin or a suntan – your skin factory takes even longer to make vit D.

What are the issues if we don’t get enough?

I live in northern Italy, just slightly north of the level of Turin, and it is reckoned by our local osteoporosis expert that even here more than 80% of the population (both men and women) are vit D deficient and that increases a lot of risks as they age. Obviously most people know about osteoporosis and resultant broken bones – but fewer know about its role in muscle health. Severe deficiency can lead to similar stiffness and aches to those that many people with arthritises are familiar with. A few weeks of very high doses may improve that dramatically. It is something that should always be checked to rule it out with regard to one particular arthritis, polymyalgia rheumatica, as the symptoms are so similar. There’s nothing to say you aren’t suffering from both, but improving your vit D status rules out one cause. As we age we tend to fall more (another factor increasing your fracture risk) and studies have shown that improving vit D levels reduces the number of falls and broken bones the elderly have as well as improving their balance in general, walking and ability to get up from chairs unaided. In fact, it is thought that simply making sure residents in homes are drinking plenty and improving their vit D would prevent a large proportion of the falls that are so common and can lead to hospitalisation.

Getting a test

A request to your GP to check your vit D level is often met with some degree of scorn but anyone with an autoimmune disease should have it checked because low vit D and autoimmune disease are associated but it isn’t known whether it is cause or effect – and everyone who is told to take “bone protection” medications (bisphosphonates or alendronic acid) should also have their vit D and calcium levels checked first because they don’t work if you are low on either and they can reduce your calcium levels even further and make you ill. It is stated in the drug information by the manufacturers – some doctors tend to think they know better. Someone I know was allowed to have her vit D checked with a very patronising attitude by the GP: “It’s very expensive you know, about £200”. It isn’t, it costs about £25 and, as a last resort, a hospital in the Midlands offers it to anyone by post as well as to NHS hospitals!

 What do you do once you know what your vit D level is?

The level at which you are said to be deficient varies from one NHS Trust to another. As an example, however, Gateshead Trust in the northeast of England recommends a range of 48 -144 nmol/litre as being adequate. Below 25 they say it should be treated with high dose vit D3 – and by high dose they mean 60,000 IU a week for 12 weeks! That, of course, needs to be done under medical supervision although if you are very deficient the likelihood of adverse effects is not very high. Between 25 and 50 they recommend supplements of 1,000-2,000 IU a day for 12 weeks, and it is easy and relatively cheap to obtain tablets for that sort of dose from Boots or Holland&Barrett. Once you are what they describe as “replete” you should continue with 800-1,000 IU/day, especially in the winter but also if you are not getting out into the sun much. Even with supplements some people find their vit D level falls quite rapidly so having your vit D checked every year or if any symptoms that disappeared with being given vit D return may be a good idea.

Be careful though: if you are on the standard “calcichew” supplements given to you if you take prednisolone, do not just take extra tablets to increase your vit D intake (whatever your doctor suggests). Taking calcium and vit D supplements together can sometimes cause kidney stones or “grit” which can irritate your bladder. You need some extra calcium because of taking prednisolone (it makes you lose more in your urine) but too much is not a good thing. If you need more vit D than the 800 IU in two tablets then buy pure vit D tablets and take both. You should not take more than 4,000 IU of vit D a day unless your doctor tells you to but 2,000 IU is a perfectly safe dose for most adults.

And if you want to top up your vit D the skin way: it is safe to stay in the sun with no sunscreen for about 10 minutes, or the time it takes to start to get a tiny bit pink and warm and Cancer UK has issued some guidelines for safe sun exposure rather than the previous “don’t go out in the sun” mantra. Low vit D has also been associated with depressive mood and with SAD (seasonal affective disorder) but going out in the sun for a walk will achieve a lot in terms of making you feel better. All the UK needs now is some sun!

A few references:

http://pain-topics.org/pdf/vitamind-report.pdf   Pain relief through vitamin D

http://updates.pain-topics.org/2012/07/vitamin-d-current-research-roundup.html Update

http://updates.pain-topics.org/2012/06/vitamin-d-prevents-falls-disability-in.html   ditto

http://www.sacn.gov.uk/pdfs/sacn_position_vitamin_d_2007_05_07.pdf

http://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/

http://ginportal.info/wp-content/uploads/2011/05/309253362b6246d18dc727bfede1f05a2.pdf

Niggles and Grumbles

February 13, 2013 at 10:02 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai | 6 Comments
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I’ve got grumbley hands and feet. I’m not sure that I’d use this description to the rheumatologist mind you, but it seems to fit. I’m not in agony; in fact,I’m not even in constant pain, but if I overdo it then the hands and feet … and knee of course, how could I forget the knee … grumble!

I’ve been getting a lot more grumbling going on over the last few weeks than I’ve had for ages. I think it all started with the flare that I had between Christmas and New Year, and there have been niggles ever since.

It doesn’t seem to matter what I’m doing – and in fact my hands have been better today, back at work and typing, than they were over the four-day weekend I’ve just had. (Fabulous birthday weekend away, but that’s a whole ‘nother story!)

At least I’m not grumbling much about work right now – we’ve had two weeks of it being dead quiet, and now it’s gone manically busy! It would be lovely it was a constant steady flow, but I’m much happier with it busy and buzzing than dead as a dodo.

Well, I don’t have a rheumatology appointment until May, and things are nowhere near bad enough to make me subject myself to one earlier, so I suppose by then the grumbles will either have done what they usually do miraculously in time for a rheumy appointment, disappeared – or they’ll be bad enough that I’ll be able to have a proper grumble to the doc about them! In the meantime I shall just grin and bear it … or possibly grumble and bear it.

How do I not overdo it tomorrow?

January 2, 2013 at 10:33 pm | Posted in Me, rheumatoid arthritis (RA) | 2 Comments
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Today was my first day back at work – knee flare seemed to be pretty much over: the swelling had gone right down, it didn’t feel terribly hot, but it was achy now and then. Hurrah.

However, now the other knee had started to ache – RA, or just a reaction to me walking ‘funny’ because of the left knee flaring? I don’t know – but to add to the mix, today being my first day back at work meant it was also the first day since the holidays where I haven’t spent a significant amount of time with my feet up – and I’m really feeling that this evening, as I sit here typing with an ice pack clamped between my knees, and the heat pack waiting for me in bed!

Here’s the thing though – we’re moving offices tomorrow!

Fortunately hubby has the day off and has been volunteered, slightly unwillingly but with good grace, to be my feet, and the facilities manager in the building is also going to help us lug stuff, and then my two colleagues are both fairly fit … so hopefully I can pull out a conductor’s baton from somewhere and just direct operations!

Knee flare

December 29, 2012 at 11:22 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 6 Comments
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Well, whadayaknow? A knee flare turns out to be some kind of strange ‘dance’ move: you can see it here. Unfortunately it’s also what I’m having one of right now …. I’m dancing too: from the freezer to the microwave and the microwave to the freezer … mostly on one leg.

It started on Boxing Day evening – that’s Wednesday for those outside the UK! Just mild stiffness going upstairs – didn’t really think too much about it. Progressed to serious stiffness Wednesday morning which I assumed would pass of during the day. It didn’t. It got worser and worserer. By Wednesday evening it had started to be painful as well as stiff. I took paracetamol and grumbled.

Thursday my mum was doing a lunch for us and some friends. Splendid meal, good company but my sociability somewhat dampened by knee pain. That evening Mum asked if I did ice-packs or heat packs? DUHHH! Why oh why do I always forget those things?!

Pretty much since then I’ve either had an ice pack or a heat pack on it, or I’ve been moving around on it. It makes a huge difference. I can’t believe how stoooopid I am sometimes! But on the bright side, at least it’s starting to mend – or if it isn’t, then at least I’m starting to feel better.

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