Tags: aches, arthritis, depression, doctor, fatigue, flare, flare-up, GP, hospital, hypothyroidism, joint pain, methotrexate, MTX, pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stress, T3, T4, thyroid, thyroxine, tiredness, TSH
I went for monthly MTX blood tests today and remembered to ask if the thyroid results were normal – I’d assumed they were, since no one at the surgery had bothered to contact me. They weren’t.
Having said that, they weren’t all that abnormal either, so what are we doing about it? In their case nothing as yet, in my case getting rather confused …and cold …and tired … and achy … but mostly just confused. Until I went in and asked for the results I thought a thyroid test was just that, one test, one answer – OK, not OK, whatever. But no … it turns out there’s a test for thyroid stimulating hormone (TSH) which is produced by the pituitary gland and stimulates thyroxine production from the thyroid gland. Then there’s tests for the two types of hormone the thyroid gland itself produces, thyroxine (T4) and the other one whose name I can’t remember (T3). Counter-intuitively, if you have lots of TSH sloshing about it means your thyroid might be UNDER-active, because you have to produce a lot of TSH to get the thyroid to do anything at all. If you have loads of T3 and/or T4 (produced by the thyroid gland itself) then you obviously have an overactive thyroid as the thyroid is producing loads of the stuff. If you have very little then clearly you have an under-active thyroid.
Symptoms of the latter include feeling cold when it isn’t (box ticked), weight gain or difficulty in losing weight (box ticked), muscle aches (box ticked), abnormal menstrual cycles (oh yeaaaah!), decreased libido (what’s libido again, somebody?), irritability (well … erm … guilty) and memory loss (not sure, can’t remember). However, my levels of T-whatever – not sure if they tested for T3, T4 or both, are in the normal range. My level of TSH though is just outside the normal range – just a smidge too high. As a consequence the docs have decided to wait and see. I can totally understand the logic of this – apparently it does fluctuate and it’s not as if it’s wildly off the scale, so try again in another month and see if it’s still high, and if the levels of T-whatsit have decreased or not.
Really – I can totally understand that – but it’s just sooooo frustrating, as I sit here grumpily shivering, with period pains! (Oh yeah, and a flare just to increase the fun.)
One interesting thing – apparently the most common cause of hypothyroidism (under-active thyroid) is an autoimmune problem. Surprise, surprise!
As to the confusion – I’ve just about got it straight in my head that there are all these tests and roughly what they’re for, but nowhere can I find clear guidance as to what is and isn’t normal range for any of these tests – it seems that for TSH it used to be considered that up to 5.5 was OK, now they reckon about 4.5, or maybe 3.5, or sometimes 2 depending on who you ask, and apparently some authorities in the UK reckon up to 10 is fine! I’m just going to go off and find a nice sandpit to bury my head in for the next month.
Tags: flare, R.A., RA, relaxation, Rheumatoid arthritis, sleep, stress
In the spirit of this blog being positive, here’s the antithesis to the post below. Ten good things to do during a flare – but of course it only applies if you’re me, ’cause everyone’s flares are different!!
1. Take it easy.
2. Take time off work.
3. Really – take time OFF work.
4. Listen to your own excellent advice about taking time off work.
5. THINK – try to be slightly more aware of hands and feet BEFORE you do dumb things!
6. Keep as active as possible – but don’t force yourself.
7. Do everything you can to get to sleep and stay that way at night! E.g. Take 5HTP, take paracetamol just before going to sleep even if you’re not sure you need them, listen to Bill Bryson reading one of his books in his gentle, soporific voice (or Tim Piggot-Smith reading David Starkey, or anything by Stile Antico)
8. Eat sensibly and TRY not to comfort eat!
9. Learn to count.
This flare I have managed to take note of 1-4 and 6-7 this time, and I am feeling A LOT better. I’ll try harder next time and see if I can manage all ten … well nine … well eight really …
Tags: aches, arthritis, heels, outfit, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), shoes, shopping, sleep, stress, tiredness, weather, wedding, work
I think that now is the time to admit defeat … talking of which my feet are admitting defeat too, but I’ll come back to that in a minute!
Ever since I was diagnosed with this dratted thing I’ve been trying to see if my RA followed some sort of pattern – diet, stress, tiredness, weather, hormones … and every time I try to keep some sort of log and think I’m getting somewhere, the pattern just falls apart after a while. I think I give up on trying to find out exactly what it is that makes my RA worse – not because I don’t think the patterns are there, but because I think they’re just too complex. I suspect that tiredness AND weather AND stress AND hormones AND diet probably all play a part – but my analytical abilities (or record-keeping abilities for that matter) just don’t stretch to trying to work it all out … especially when I’m feeling ‘carp’ anyway!
It would be really interesting to keep a log of all the different factors every day and try to analyse it – anyone up for the challenge, ’cause I’m not!
On the bright side, I have an outfit (minus shoes of course!) for the wedding of Mr and Mrs Mooseface (aka my brother and his fiancée). This is why my feet have admitted defeat – not that I’m going to give up on shoes (don’t panic Mr and Mrs M, I’m not coming barefoot although that has been suggested!) Just that my friend Debbie and I had a NINE HOUR shopping trip on Saturday (including the drive to Norwich and back, which Debbie did thank gawd!) and my feet have given up as well since then!
We had a terrific time, and a successful outfit hunt, but as my dress has black in it I thought ‘Aha, I probably have some shoes at home that’ll do the job!’ Well y’all know how much I love shoe shopping (not), so I thought that seemed like a cunning plan. Got home, tried on the outfit, showed Hubby (who liked it, thank gawd!) and tried on the shoes. These are pretty un-fancy black sort of court-shoe/pump things that I’ve had for years, with a harmless-seeming one-inch heel. I thought perhaps a shoe-bow in one of the other colours in my dress, or in silver to match the shrug I got to go with it, would smarten them up.
Well – the shoe trying on session was NOT a success. I have one thing to say about it. OOOOOOOOUUUUUUUUCH!!! Actually the heel on them was really ugly, so perhaps it’s for the best! Anyway, looks like it’s flats for me! (OK, that was more than word … I don’t care! I ache! Stop getting at me! Waaaaah!)
So … will have to have a shoe shopping day some time in the near future! Probably not this weekend as am hoping to fit in another hike with Weeny, hunting butterflies and orchids to photograph … at least the feet will be in walking boots for that so I can probably cope, if the weather improves. It’s continuous rain at the moment.
Tags: cancer, cold, de-stress, flare, floret, holiday, hot flashes, hot flushes, RA, Rheumatoid arthritis, stress, thyroid, work
It’s been ages since I posted! First of all I was on holiday (fab) and then I was back (less fab) with intrays (both virtual and paper) bulging at the seems, even though ‘the boss’ was doing a sterling job of dealing with stuff while I was away. My stress levels weren’t helped by the tax office sending out wrong info about maternity pay just when I needed to look into it, as ‘the boss’ is nearly half way to having a baby! Their calculator told me I could claim back about 10% of what I paid out in statutory maternity pay – which worried me a bit, since I’d thought I could claim back 100%. Turns out I CAN claim back 100% – but I had a stressful week or two before I found that out. Then they decided to keep me on my toes by telling me I’d not paid April’s PAYE, so I had to waste time phoning them up, only to be told ‘Oh sorry – the computer is accidentally sending out non-payment notices every time someone sends in an end of year tax statement.’ Marvellous!! Work itself has been pretty stressful too – but at least busy, which as usual I have to keep reminding myself is GOOD THING!
On top of all this I’ve recently heard that a good, and local, friend of mine has just been diagnosed with breast cancer. She also has RA! As my friend Weeny would say, ‘You really must stop going for those buy one, get one free offers!’ Seriously though – you’d think RA would be enough to cope with!
As to the good ol’ RA, it’s MOSTLY been behaving itself. I thought I was in for a holiday flare as I watched my hands getting redder and redder and more and more swollen as hubby drove us down to Dorset, but a few hours after we had reached our friend’s house, where we were to stay the week, they’d settled right back down. Perhaps my body suddenly went ‘Hey, chill out penguin – you’re on holiday!’ Had a blipette (florette, flarette?) this week, probably due to finding out about my friend’s cancer, but again it hasn’t materialised into a flare, thank goodness.
I’ve also just had a thyroid test (again) because I’m feeling tired and FROZEN all the time. While this MIGHT have something to do with the fact it’s bloody cold and we’re getting early April weather in mid May, I’m frozen even when it’s quite warm, so I think there’s more to it than that. The only time I’m really warm, in fact, is when I’m having a hot flush. Imagine the fun of dressing for a day of being 90% frozen and 10% boiled – it’s kinda tricky!
I think there’s about six things that could be expanded on in separate posts here, not to mention an interesting bit of info about blood tests that Maggie sent me before I went away and that I’m still planning to blog on at some point. But meanwhile it’s nose back to the grindstone – a rather grim mixture of interviews on child abuse and prostitution, and a disciplinary hearing! Oh well – it can’t be chocolate every week – last week was mostly all about chocolate, so I suppose I shouldn’t complain!
Tags: aches, arthritis, clothes, comfy shoes, feet, neck pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, shoes, stress, tiredness, wedding
I have a wedding to go to in August – I’ve mentioned this once or twice before! – but what am I going to wear when I can’t wear ‘nice’ shoes?
I get the feeling (probably erroneous) from my mum that she and other family members have been discussing how to make sure Polly doesn’t look too awful for the wedding. <Sigh> Shoe-wise I really can’t wear the ugly contraptions that are my everyday-wear, but I want something deep and wide enough to fit my orthotics, closed-toed so I don’t feel self-concious about the RA side of things and that doesn’t look like this:
I’m sure you can see why!
Thanks to my ‘interesting’ body shape it’s a sod to find trousers that fit properly so the obvious trouser-suit option probably isn’t a serious option … although I suppose I could alter it … and anyway, it’s going to be summer, so those kind of shoes are going to look wrong with ANYTHING! And I don’t want to look like this:
(With apologies to LimeGreenSquid for nicking his picture. If you object, let me know and I’ll take it down but it’s just soooo perfect!)
Since methotrexate’s magic weight-loss effect seems to have lasted a mere two weeks, I suspect I won’t be losing a few stone before then and presenting a sylph-like figure either, so all in all I’m a bit fed-up. There’s no pleasure in clothes shopping when you look and feel like this and I’ve never in my life had pleasure from shoe shopping – so while I’m really looking forward to the wedding, the preamble is worrying me slightly.
Pumps or flat Mary-Janes won’t fit the orthotics, but at least they’d be flat. Maybe that’s the way to go and a day without orthotics might not hurt toooo much. (I can see the steam coming out of hubby’s ears when he reads this, but sometimes a gal’s gotta do what a gal’s gotta do!)
Whatever I end up with it has to be flat. I don’t fancy spending the week after the wedding in self-induced vanity-related agony!
Bright ideas anyone?
Tags: aches, arthritis, flare, flare-up, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stress, tiredness
On the plus side, at least a yo-yo goes up as well as down! I’ve had another mini-flare (fizzle, floret?) since I last posted, which is why I’ve been so quiet lately … well, that and the fact that work has been insanely busy lately. I rather strongly suspect the two are connected!
I have posted before, once or twice :-) on the importance of pacing yourself and a week or so ago I gave a great demonstration of exactly how now to do that! Worked long hours, worked part of the weekend, ignored the warning signs, took paracetamol or rubbed in magic herbal rub stuff and just kept on working … and of course woke up one morning almost unable to get out of bed. I did get out of bed … still had deadlines to meet, but came home early in a LOT of pain.
So, what would a sensible person do at this point? Take some painkillers, go to bed and have a bit of a snooze probably. I thought, ‘Well, I don’t feel well enough to work but I still have all this City and Guilds embroidery stuff I need to do, so I’ll go to bed with some research books for that …’
Eventually I reached a point where I HAD to go to sleep, but was still trying not to as I thought that would mean I wouldn’t sleep at night. I got to the point where I realised that I’d need matchsticks if I was going to keep my eyes open and gave in.
At this point I was still in a LOT of pain but did drift off to sleep … and woke up an hour later feeling fine! I know sleep is important, but that’s a really extreme example! And I did sleep well that night too. I must have been really sleep deprived and not even realised it!
Mind you, waking up with five to ten hot flushes (flashes) per night is not exactly helping on the sleep front.
Still, things are looking up – work is now steady (which means that I’ll be panicking in a week or two that there’s not enough), apart from one odd twingey pain in one knuckle I’m not bad on the RA front … the yo-yo is on the upswing again … and will hopefully sit at the top for a while at least!
Tags: aches, arthritis, computers, computres, exercises, flare, joint pain, neck pain, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stiffness, stress
I’ve got two different rather odd pains to add to the usual mix at the moment! One is a burning pain that I get intermittently in my spine, a few vertebra down from my neck. It’s not too bad, just a bit odd, a bit burny and a bit tingly. Bizarrely, my physio thinks this is a sign of a bit of stiffness. Does anyone else get stiffness manifesting as burning?! Well, she’s given some exercises for flexing the upper thorax, and if they work then I guess she’s right.
The other one is that, having found ultrasound fantastically helpful for ages now, I’m suddenly finding it incredibly painful on my acromioclavicular joint. (Excuse my showing off my knowledge of joint names – it took ages for my physio to teach me this one and I rarely get the chance to use it … it’s the little insignificant (until it hurts) joint between the shoulder and color bone, right at the front.) It starts off alright and then it very quickly gets incredibly sore and painful. Physio says she’s come across this happening before but she doesn’t know why, and she wonders if it’s just a bit more inflamed than usual.
I hope it’s NOT more inflamed than usual. Did I speak to soon about averting a flare? Today certainly didn’t help on the stress reduction front – all clients want their work now (if not last week), and one thought I could proofread 90,000 words in two weeks. Well, I could if I had nothing else to do … grrrr… Oddly enough I feel more stressed now with both computers working than I did yesterday with both computers not working. Does this say something about computers, I wonder?
Tags: computers, flare, RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stress, Ulric Computers
As someone in the office said today, ‘I love what they do … I just wish they did it better’. I had an unbelievable computer day yesterday. My work computer finally died. We won’t go into the fact that I’ve been saying ‘the C drive’s dying’ for a couple of months and the IT guy’s been going, ‘Oh no it isn’t …’ Suffice it to say, it did.
After one HELL of a day I went out for a very pleasent evening of sewing and chatting with the local quilting group (where I don’t quilt but do sew and chat), came home and thought ‘ better check my email’ … so I turned on my laptop and it broke. Honest – just like that. The on button became an ‘in button’ – permenantly pressed in and fallen down inside the computer.
I really thought that was the end of my computer, but I’d gone through stressed and out the other side yesterday and I was, extraordinarly, completely calm! I just decided I didn’t have room or energy to worry about anything else and what would be would be.
I did think all the stress was bringing on a flare last night, but it hasn’t happened – whether that’s because of my determination not to get stressed about this latest thing and to calm myself down, or whether it was never going to happen anyway I shall never know.
Anyway, to ‘cut stories long and short’, I phoned the local IT shop this morning, explained the situation, got a very poor prognosis but ‘bring it in and we’ll look at it …’ I did, he did, he jammed a screwdriver in a place I wouldn’t have dared tamper with and yanked off part of the top and then stood there going, ‘But … but, but, but, but… but …’ interspersed with ‘That’s not supposed to be able to happen …’ and ‘In all my forty years in the business I’ve never seen anything like this …’
Astonishingly the story has a happy ending – or perhaps a happy middle as it’s not totally resolved yet. He showed me where I needed to apply some superglue (of all things!) and then how to put on the bit he’d yanked off, and showed me that the laptop still works! Woohoo! He didn’t charge me a penny and even said if I was nervous about putting the bit of cover back on I could bring it back in and he’d do it for me. That’s customer service for you – and I’ve never even been a customer in there. But you know what – if I want a PC in the future, that’s the first place I’ll look, for sure! A ‘big shout out’ for Ulric Computers!
I shall leave hubby to do the supergluing – feeling far too fumble-fingered after all that, although really I’m sure none of it was anything I did!
Tags: arthritis, broke, cats, fatigue, joint pain, methotrexate, Middle-sized cat, money, MTX, NASTY, National Institute for Clinical Excellence, NHS, NICE, occupational therapist, OT, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stress
Firstly a ‘big shout out’ to Warm Socks for reading comment replies. Well done to you, m’dear! I also read them when I remember to tick the little box, but I usually don’t remember.
Secondly, for them as don’t keep up with comment replies, like me, tinglywinglypingly is a thing of the past – hurrah.
Thirdly, I had my methotrexate last night and, unlike last week, not only kept it down but slept like a log afterwards and feel great today. Middle-sized cat is also delighted, as he tends to sleep next to/on top of me, so he also got a good night. After a trip to the V-E-T yesterday he’s now costing me about SIXTY POUNDS A MONTH in medication … but of course he’s worth every penny, and more.
Hey ho – it’s only money … not as important as health.
I obviously value him more than NICE values me, or rather values other R.A. patients who are not so lucky as I am currently! This article in The Guardian tells an all too familiar story.
Tocilizumab (another biologic), which costs £9,000 per patient per year (so about the same per month as middle-sized cat costs me per year … but then consider the difference in resources between lil’ ol’ me and the British government … on second thoughts, maybe not; I’m not quite broke yet), is being given to patients in Scotland (and indeed most of the rest of Europe), but NASTY has decided once again that it’s too expensive for patients in England. And once again the fact that it could keep people in work and reduce the costs of unemployment benefit, keep them walking and reduce the cost of wheelchairs, keep them out of hospital and reduce the costs of round-the-clock healthcare … etc. etc. etc. has escaped them. It’s an argument I’ve had with them a few times before on this blog, here and here and
Tags: aches, arthritis, Chocolate pizza, life, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), stress
I do hope that RA hasn’t come to define my life, but I when Robin at The Truth About JRA asked me about a medical test I’d taken some years ago and I couldn’t remember I found myself thinking ‘That was before R.A. Well … I can’t be expected to remember THAT far back!’
I was diagnosed eighteen months ago.
That scares me. I’m not sure what to ‘do’ with this realisation that RA has become such a big part of me … possibly the best thing would be to screw it up in a small ball and throw it in the waste paper bin.
Thank goodness that if I wake up with this thought at four in the morning I have my trusty iPod to console me – newly loaded with two excellent glum thought-destroying missiles – Cranford (a present from hubby) and Pride and Prejudice (a present from me!) I can also picture Wren building a chocolate pizza, which is sure to cheer me up!