Puzzling pains

March 11, 2010 at 9:19 pm | Posted in Me, rheumatoid arthritis (RA) | 3 Comments
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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?

I hate computers

March 10, 2010 at 2:30 pm | Posted in rheumatoid arthritis (RA) | 1 Comment
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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!

Seeing RA under every stone

February 8, 2010 at 10:36 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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Is it me, or do others with rheumatoid arthritis see RA possibilities everywhere? I’ve told my bro, who has had neck pain for years and gets inflamed knuckles, that he really should get an RA test, even though it’s incredibly unlikely in a lad his age. (Unlikely but not impossible, as Rhuematoid Arthritis Guy can testify, and not an unreasonable suggestion given that he’s my brother and we do have family with RA.

However, it starts to get a bit silly when you’re sitting chatting to someone and start thinking ‘ooh, they get stiff in the mornings; could be RA.’ Well yeah, I have to remind myself, but when they say stiff they probably mean their muscles ache a bit because they went jogging last night, not that they can’t move their joints. But then again, RA is notoriously hard to diagnose, so when you’re sitting in the OT’s room chatting to another patient who is being treated for ‘carpel tunnel syndrome’ in both wrists, has been referred to the podiatrist because of pain in both feet, finds it hard to grip the steering wheel for any length of time, gets ‘dead arms’ in the middle of the night just like I do and finds it difficult to be a passenger even in the car for long journeys because when she gets out she’s ‘stiff all over’ … oh yes, and this all started with ‘the change’ … you can’t help wondering, can you? Or can you? Is it just me?

It’s hard to keep your mouth shut sometimes, but I managed it. For all I know she’s been thoroughly tested for it and hasn’t got it, but I couldn’t ask; I’d never even met her before that day. It makes me wonder even more because when I was diagnosed with RA I’d gone to the doctor saying, ‘Help – I think I’ve got carpel tunnel syndrome!’

I suppose I shall never know, and I really hope I’m barking up the wrong tree altogether, for her sake … but I can’t help wondering. Am I being silly?

Sick, sick, sick …

January 29, 2010 at 2:45 pm | Posted in Me | 13 Comments
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No I’m not actually sick, I’m just sick to death of the way hormones seem to rule my life. Until Wednesday I’d been menstruating pretty much constantly since before Christmas.  By Sunday last I looked and felt like death warmed up, was bursting in to tears at the slightest provocation (or no provocation) and figured it was time I saw the doc. I knew I’d have trouble when she recommended a tablet that messes with the hormones, but heck, what else are you supposed to do stop a continuous period? So I bit the bullet and went on to Norethisterone (synthetic progesterone). I was a good girl – I didn’t even look at the side effects when I started it on Tuesday. I didn’t even look to see it was synthetic progesterone at the time.

Well the good news is it worked like magic – by Wednesday my seemingly never-ending period had stopped, the hot flushes hadn’t come back and I had very few RA symptoms. By yesterday I felt tired but so much better than I had been feeling. Then last night I woke up at two in the morning with a gnawing hunger pang in my belly – I lay in bed fantasising about porridge with tons of Golden Syrup on it! Fortunately Middle-size Cat and Enormous Cat were both firmly on top of me, purring and being cute, so I resisted the temptation as I didn’t want to disturb them. (Note, disturbing hubby didn’t even enter into the equation – awful, aren’t I? Then again, not much does disturb hubby once he’s asleep!) It’ll pass, I thought.

I woke up again at about six-thirty with a really awful gnawing hunger pang in my belly again! Hmm, I thought, this isn’t good. Heck, it’s Friday. Let’s go wild and have some porridge (instead of the usual and rather better for me Bran Flakes). I had some porridge. The hunger pangs didn’t go away. I made my lunch – beef salad. Normally when I’m making my lunch the absolute last thing I want to do there and then, straight after breakfast, is eat it. Today I could have eaten the whole damn lot. (I didn’t, but I could have done.) Tiny and Middle-sized cats were lucky to get their usual rations of my lunch today!

The gnawing hunger pang in my belly has NOT gone away. I ate a mid-morning snack of soya nuts, I had another slightly later morning snack of a few grapes and some dates. I had an apple. (All this before lunch!) Still gnawing hunger pang in my belly.

I had my lunch. Gnawing hunger pang in my belly. I hate to admit this but I then went to the local bakery. I’m not going to admit to what I bought (and ate) but suffice it to say that Mrs Baker would have been quite shocked if she’d known I was off back to the office to eat it all there and then, but that’s what happened. So would hubby, for that matter. He would have rather hoped I might have brought a bun home for him.  (Sorry darling!)

Guess what? Gnawing hunger pang in my belly – still. My helpful friend Weeny’s response was, ‘You’re hungry? So what’s new?’ (She’s renowned for her sympathy skills – her hubby and I tease her regularly about their lack!) The thing is this isn’t just hungry – it’s like a pain, it has to be pandered to; it’s constantly demanding. I can think of nothing but food. I just want to eat everything in sight. I look at my half-cup of cold coffee and picture a big hot chocolate swirling with cream and marshmallows; I look at the snow swirling around outside and think of ice cream; I don’t quite look at ‘the boss’ and think ‘roast beef’ but believe me I’m not that far from it. And to add insult to injury I’m doing a transcription  all about chocolate!! (I kid you not.)

You know what? I don’t think I’ll be taking any more Norethisterone!  I looked at the side effects this morning and sure enough weight gain and appetite change were nestled amongst them. I’ll put up with a constant period, I’ll live with anaemia and fatigue if I have to, but I really can’t cope with any more of this!

I wish I could live in the dream world my consultant inhabits

December 27, 2009 at 11:03 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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It’s official – I had a flare at the end of October/early November … and more, I suspect. No kidding. I think I knew that, but this time it actually showed in the bloods! That’s a first for me!! I’ll give the consultant his due though – he was as amazed as I was that the bloods actually matched with how I’d felt, so he does at least appreciate that one can feel totally lousy and have no indication in the blood tests whatsoever, and vice versa.

Anyway, we agreed that things were going pretty well at the moment and that it didn’t seem sensible to go on increasing the MTX willy-nilly if things were OK. I explained that I knew I was much, much better than last time I’d seen him (which I think was well over a year ago, as I’ve since seen a registrar and a nurse but not the man himself), but that they certainly weren’t perfect, and for the first time he admitted that I probably wasn’t going to achieve perfect … I’d kinda figured that out, but still a slight blow to hear him say it!

He then cheerily added that never mind, compared to what he usually saw I really wasn’t bad at all. He has no idea just how bloody irritating this comment is – he’s said it before. I think last time I was too dazed and generally fed up to actually respond, but this time I was properly prepared and I pointed out that I wasn’t comparing myself with his other patients – I was comparing myself to myself before this whole R.A. business started, and that when I do that I don’t see my current self in a terribly favourable light. The nurse who sits in with him (as a chaperon and to make sure he remembers to fill all his forms in!) was nodding sympathetically and understandingly behind his back. I got the feeling she’d heard this comment from him before and had thought exactly what I was now saying. Anyway, he sort of blinked a bit, looked rather surprised at being answered back to and mumbled something that was vaguely conciliatory … I think.

Then he bid me to enter his dream world by saying, “If the MTX doesn’t keep things under control, if you have another flare, we’ll put you on these terribly expensive new drugs called biologics or anti-TNFs.” (He does tend to forget I have a brain.)

I snorted – very rude, but it just sort of happened! I said something like, “Have to be one hell of a flare for the NHS to let me on to those!”

“Oh no,” says he, “just an ordinary sort of flare.”

Well, that’s certainly not the impression I’ve been given by the NRAS magazine, the people on the NRAS forum (other R.A. sufferers, generally in a much worse state than me, who have failed the ‘DAS test’ for anti-TNFs), the press, people I met in Barcelona, the nurse practitioner, the GP, the practice nurse … just about everyone else really. Since this is the man that told me I should see him in three months last time, when it was totally impossible for anyone to get an appointment closer than six months, and the man who told me that all I needed to do if I had a flare was phone and I’d get straight through to someone on the helpline (not true as it’s usually unmanned and then they don’t call you back) I don’t feel too filled with faith about the biologics comment either! I dare say though that his “ordinary sort of flare” would be the ordinary sort of flare that his other patients have, not my little fizzle!

Well, hopefully the MTX will now do its job properly and I won’t need to ever find out whether he’s living in a dream world or I’m just being unnecessarily pessimistic about my prospects for biologics!

Just when I think I’ve got a handle on this thing …

December 17, 2009 at 5:19 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 10 Comments
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I’m baaaaaaaaaaaaaaaaaaaaaack! Don’t suppose anyone missed me (sob) but if you did wonder where I’d gone, I’ve been quiet because I’ve been having MAJOR computer problems at work and major getting my City and Guilds embroidery modules done on time problems at home!

Yesterday I was completely convinced I’d sussed my R.A.! I know there’s a link with the weather and I know there’s a link with hormones. I haven’t kept a diary but I thought I saw a pattern emerging. The pattern I thought I saw was that hormones were in the lead – provided I was menstruating or there abouts then, regardless of the weather, I’d be pretty good. If was in the midst of hot flushes then I would be less good and even worse when it rained.

Of course that turned out to be far too neat and tidy! Today I’m menstruating again (oh joy!), grumpy as hell and full of aches and pains. Aaaaargh. Of course things are complicated by the fibromyalgia, but it all FEELS like joint pain right now (apart from the period-related back ache of course!) A little hard to be sure though.

Pollyanna Penguin’s middle-size adventure

November 27, 2009 at 11:45 am | Posted in rheumatoid arthritis (RA) | 3 Comments
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Following on from my big adventure to Barcelona earlier in the year, I’m off to Wales for the weekend. It’s going to take substantially longer to get there than it did to get to Barcelona. I’m going by train and I’m rather dreading the journey.

Fortunately Maggie, she of the occasional comments on this blog and provider of the link to the real life chocolate pizza, is putting me up for a night on the way there, so that breaks the journey a bit, but next week I shall be coming home from Wales in one fell swoop.

On the train I’ll be able to get up and stretch my legs now and then, and I might even be able to sleep for part of it, so it has advantages over car travel from an R.A. point of view. Hopefully I won’t get too madly stiff. What I’m worried about is the fact that I have a total of ten trains to catch in the next five days, excluding London Underground links which are the biggest pain of all, and the British train service is notoriously unreliable … to put it politely. Combine that with severe weather warnings across the south of England (I have to travel through London both ways), and it could be an ‘interesting’ weekend.

At least I’m looking forward to seeing Maggie and family and my friends in Wales. Pity that all their Christmas presents are due to arrive in the post to me at work today, and I’m not going into work – I didn’t time that very well!

An unexpected treat!

November 23, 2009 at 8:13 pm | Posted in Me, rheumatoid arthritis (RA) | 4 Comments
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We’d intended to have a day trip up to Blakeney Point yesterday, on the north Norfolk coast. It’s an area of slightly bleak but beautiful marshland, famous for its bird-life and a sunsets, and a lovely place for a walk. Unfortunately it was pouring when I woke up, and I was as a stiff as a board and in pain, so pretty much my first thought on waking was, ‘We ain’t goin’ nowhere.’ My second thought was, ‘Then again … it is only half-past-five…’

In typical Polly Penguin doing the positive thing fashion I thought, ‘I’m sure if I go to sleep again I’ll be fine when I wake up, and so will the weather.’ I wasn’t. It wasn’t.

But gradually, with some TLC (and perhaps more importantly coffee) from hubby (and some TLC from middle-sized cat too) I started to thaw and bend, and the sun started to come out, so we thought we’d risk it and go.

I’m so glad we did, although our arrival and first few minutes were not auspicious. It’s quite a long drive so we felt the need to avail ourselves of the facilities and then top up on coffee, but although Blakeney is a famous beauty spot it is remarkably unspoiled. This is of course a GOOD THING … until you want coffee and a loo. I remembered seeing a big sign outside the King’s Arms saying ‘Kenco Coffee served here,’ so we trudged down, me still somewhat stiff and pained. There was a girl outside emptying bins who gave us a blank look and then ignored us. I eventually found the door, which didn’t look too inviting, went in and was me by a fellow giving me another blank stare. ‘Are you doing coffees?’ I asked. Blank stare. Then, ‘Nah, we don’t open ’til twelve.’ I pointed out that the big sign outside saying coffee was being served was, in that case a tad misleading. We walked out to the accompaniment of further blank stares.

Things got better after that. We decided to brave the Blakeney Hotel. Nothing outside to say they served coffee – it’s not the kind of place that has notices outside. Far too grand. In fact it’s not the kind of place that a pair of scruffs in walking boots and wellies felt all that comfortable about going in to, but we thought we’d risk it, especially as nobody really goes to Blakeney Point if they aren’t walking boot/wellie brigade. The charming receptionist said yes, they were serving coffees, and where would we like them? We chose the magnificent ‘sun lounge’ looking over the marsh to the sea, and had a very enjoyable coffee there before heading off on our walk. Nicely thawed I felt able to tackle a short potter around on the marsh.

We did even have some sunshine! Then hubby said, quite unexpectedly, that he thought he’d treat me to lunch at the hotel! Yum! I’m sure that melon with lemon sorbet and a port syrup, followed by roast pork with all the trimmings and a rhubarb and ginger trifle would not be what the rheumy would recommend, but hey, it was a treat and it was absolutely delicious! Service was very good too on the whole, although there was some confusion regarding post lunch coffee. (Yes, I know, I drank too much coffee yesterday!) We got it in the end though, and it rounded off a lovely meal very nicely. We sat in the Sun Lounge again and watched the rain lashing down outside!

By sheer amazing luck we’d just decided we’d better wend our weary way when out came the sun again, so we didn’t even get wet walking to the car park. Did get this lovely shot of a boat against the stormy sky, with the sun catching it just right.

Boat at Blakeney

Then home past a lovely rainbow, and even got to see a barn owl drifting along in a field by the side of the road. One of my favourite birds and always a treat to see.

So a day with a very unpromising start certainly turned out to be full of promise after all. And talking of promise, hubby’s promising me one of his Hubby Special Shepherd’s Pies, so I need to go and eat it. (Although you’d think after yesterday’s lunch I wouldn’t need anything for a week!)-

Wax bath therapy

November 20, 2009 at 7:52 pm | Posted in Me, rheumatoid arthritis (RA) | 10 Comments
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I’m slightly confused because my lovely physio has suggested wax bath therapy for my hands … and referred me to an occupational therapist for it. My confusion arises from the fact that I would have thought that wax bath therapy was a physio sort of thing to do and definitely not an OT thing! I wonder if the OT will say the same when I see her? I wonder how long it will take to see her, given that it took seven months to get a physio appointment.

Anyway, if anyone has ever used a wax bath could they let me know; I’d be really interested to know if it helped at all. I did find a research paper that said it could be helpful in RA if combined with exercises but not on its own – well my hands certainly get plenty of exercise with all the typing and craft stuff, and I do some simple range of motion type exercises in the mornings too, so perhaps the wax thing will do some good.

Seem to be OK today …

November 11, 2009 at 2:35 pm | Posted in Me, rheumatoid arthritis (RA) | 15 Comments
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I was getting to the point yesterday afternoon where I was fairly convinced I was having at least a fizzle … some reasonably significant pain in the afternoon, tiredness too, and by the time I went to bed I couldn’t find a comfortable position because however I lay something hurt.

I’d had a busy, fun evening and a very unhealthy dinner! Yesterday was the night of our local sewing/quilting/crafting/whatever group and as a friend of mine who works locally but lives some way away also goes along, I asked if she wanted to come back to ours for a quick bite to eat before we went. I warned her it would only be pizza because we were in a hurry … so not a healthy start there … and she kindly contributed a chocolate putting with chocolate sauce AND cream for afters! Oh dear … but yum.

Anyway, here’s the thing … I feel much better today! So perhaps pizza and chocolate pudding is my ideal RA diet?

Erm no … before i got lots of angry comments, I’m not entirely serious! But it does show how careful you have to be not to attribute RA (or lack of it) to things without doing some serious research and testing!

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