I’m bloody glad I’m not flaring!

August 13, 2009 at 2:25 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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I can now claim to know the car park at the hospital where I have physio quite intimately. I know how many spaces there are, I know what sort of trees surround it, I know the view across the fence over the corn field, I know there are blue tits and great tits and some sort of finch foraging in the trees, I know that the oak tree has a few early common spangle galls on it.

No, I wasn’t doing some sort of strange nature survey of the hospital car park – I was waiting for the RAC! Yes, the car has broken down AGAIN! Having lost my marbles and my rag, I have now also lost my car! (Well, hopefully not permanently, but it’s in the garage.)

My wonderful hubby drove out to see if he could help and,although he couldn’t, he waited another hour with me until the RAC arrived. It was a 2.5 hour wait in total – not fun.

Fortunately the RAC guy (who was nowhere near as lovely as the adverts would like you to believe, but OK) got the car going – but I had to take it into the garage because it was still showing faults.

I was patting myself on the back last night thinking how well I was coping with all this … but when I got home it all finally hit me. I felt absolutely exhausted, headachy, aching all over, sore hands, sore feet … hmm, so looks like a fibromyalgia AND RA flare, I thought. Lovely …

But no – I made myself get an early night, convinced myself that the car would probably be OK,managed not to worry too much and … well, I’d like to say I feel a million dollars today but that would be rather overstating things, but AS YET I am flare free. Yippee!

I can’t promise that’ll still be the case if there’s real car disasters on the horizon, but I’m OK for now!

Could be that having just had physio helped too!

Another bad swine flu joke?

July 25, 2009 at 7:46 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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One benefit of suffering from RA is that you don’t really notice the aches and pains when you go down with swine flu!

This time ‘the yolk’s on me’ though, because I’m just getting over a bout of (presumed) swine flu as I type. I’m one of the awful people that had the flu and went to the surgery … but then again I think that’s where I picked it up in the first place!

When I went for my blood test last week the nurse said, ‘Hey, aren’t you impressed? I’m running on time!’ I said no, actually, I’d just settled down with a rather good magazine and was enjoying the break! She said she’d been trying to do me a favour because, as a ‘valued customer’ she didn’t want me sitting out in the waiting room too long or I’d catch swine flu! We both had a chuckle, but looks like she wasn’t kidding as by Wednesday I felt really ropey with a dicky tummy, and suddenly on Thursday afternoon I felt violently sick and had to come home. To cut a long story short, I phoned the surgery Friday morning and said I’d had a dodgy tummy for about a week and thought it might be my medication. Saw the doc (after fighting my way through the receptionists’ blockade), and she said ‘Lots of people with swine flu only have symptoms of diarrhea and vomiting, as well as the fever; might be that.’

‘Oh no,’ says I, confidently, ‘I haven’t got a fever … interesting though, I thought you had to have flu symptoms.’

‘I’ll take your temperature anyway,’ says she, and sure enough I DID have a fever, though only a little one.

I went home, felt gradually worse, went to bed, felt MUCH worse, and ended up, after a period of violent shivers that felt more like convulsions, with a temperature of well over 101.

Still feeling like death warmed up today but temperature almost back to normal – good job I’m a fast typist or I wouldn’t have made it through this post! I’m off to bed now.

Funnily enough I’d booked Friday off as holiday so had tied up all the loose ends at work … however, think I’ll have to have Monday off too. Hubby nearly fainted when he said that and I agreed! That told him how ill I was feeling!

Fibromyalgia AND RA … but there’s light at the end of the tunnel

June 28, 2009 at 10:00 am | Posted in rheumatoid arthritis (RA) | 3 Comments
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Well, I had my consultant appointment on Wednesday – saw one of the registrars who was really nice, listened, sympathetic, examined properly, no sarcastic comments or comments about how lucky I was to have RA mildly. (I figure no one’s lucky to have RA – full stop!)

She did drop a bit of a bomb-shell though, or so I felt at the time – that my symptoms indicated fibromyalgia as well as RA. Fibromyalgia symptoms are aches and pains in the muscles around some joints, serious fatigue and a feeling of general unwellness … sounds quite simliar to RA in many ways, only muscle based, and one of its old names was in fact muscular rheumatism.

Having got over the initial shock and feeling of oh hell, something ELSE to contend with, I can see some reasons to be cheerful though!

1. My sister-in-law has had fibromyalgia for quite some time now – grim for her, but it’s handy for me to have someone I can talk to who really understands what it’s like.
2. It’s not like having RA twice over – which was my initial feeling. Fibromyalgia (which makes you feel generally crap and all over achey, and actually affects muscles) is not progressive and not (if you can crack it) permanent.
3. The current most popular theory about fibromyalgia is that it’s fundamentally caused by a lack of deep sleep. People with fibromyalgia may be insomniacs, but just as often they’re people who seem to get plenty of sleep, but it’s REM sleep (dreaming sleep) rather than deep sleep, and that’s not good enough. And the good news is there ARE things I can do that can improve my sleep.
4. There IS a drug that’s often successful in curing fibromyalgia if given in small doses (amitriptyline) but it has some unpleasent side effects including weight gain, the last thing I need! But before I try that there are also things I can do to try to balance my own sleep pattern. These are getting aerobic exercise (kinda tricky with RA but I’m working on it), having a regular routine and going to bed at similar times each night, reducing tea and coffee (a real challenge for me, but as most of it is instant and decaf I don’t think it’s much of an issue really) and possibly trying a supplement derived from griffonia (griffonia simplicifolia) seeds, called 5 htp, which increases seratonin in the brain and may help to improve sleep.

5. Because there are things I can actually do to help myself, however challenging they may be, I actually feel empowered – I feel I have a chance to kick this latest thing right back, whereas with the RA I feel, I suppose, pretty disempowered; I just have to lie back and hope the meds work.

So … right now I’m feeling surprisingly positive about the whole fibromyalgia side of it. Let’s hope I can keep up the exercise, regular bed times etc. and that that actually does do the trick. As to the RA, I’m on an increased dose of methotrexate although the consultant was wondering if I was just one of those people it wasn’t going to be great for – but having had a very good response to it early on, she and I both think it’s worth a shot to give it another few months on a higher dose. After all, in the UK on the NHS with mild RA, there’s not much alternative!

Psychology of Flares

June 15, 2009 at 1:03 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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I had a really good week last week – out three evenings during the week (OK, not exactly boogieing the night away, but still out and having fun), an exhibition and a carnival at the weekend, and some gorgeous walks in the local wood and heath with hubby.

I can’t say it was a pain-free week unfortunately, but it wasn’t TOO bad. I did worry, of course, that was overdoing it, and perhaps I did … I feel fairly rubbish this morning … but then again it’s Monday morning and I’m back at work, so that’s normal, isn’t it?

So while I absolutely KNOW that flares are a thing that happens and they are not ‘just in your head, dear’, I do wonder if I’ve kind of talked it up by thinking I was overdoing it and worrying that I’d have one.

Not that I’m sure I’m having one now – but you see, I’m still worrying about it … very silly really; why can’t I just get on with my life and put the worry to one side?

Maybe it’s because I’m for once NOT particularly stressed at work, not stressed about Tiny cat etc. etc., stopped stressing about someone I used to consider a friend and don’t anymore … I’ve run out of other things to get wound up about and I have to stress about my RA!

Hmm, I’m not really managing to say what I want to say here, but I’ll post anyway and perhaps someone can make sense of my ramblings. If so, please comment as I could od with some sense right now!

Ooooh no it hasn’t …. oooh yes it has …. oooooh no it hasn’t …

May 21, 2009 at 9:29 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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Did I say the inflammation and pain had calmed down again?! HAH!! Well, it did I suppose … for a few days, then it was back, then it was gone again, then it was back … but I definitely don’t think the Arcoxia is as effective as the diclofenac was. Trouble is I REALLY don’t want to go back on the diclofenac as my stomach is actually normal now for the first time in about a year!

OOPS!!! Missed a physio appointment

February 12, 2009 at 9:55 am | Posted in rheumatoid arthritis (RA) | Leave a comment
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Well I’m feeling a right idiot at the moment! I have had a physio appointment on a Wednesday afternoon (or very occasionally a Wednesday morning) since just after Christmas. Last week my physio said, ‘I’m not in on Wednesday next week, but I’ve got one on Tuesday morning if that’s OK?’ It was fine, so we booked it on.

I’m sure you can see what’s coming … I didn’t put it on the calendar, and quite late on Tuesday afternoon I thought to myself, ‘Hmm, wonder what time that physio appontment is tomorrow?’

OOOPS! By the time I phoned to apologise they’d all gone home for the day, but I hope she got the message. Perhaps she’ll have forgotten by the time I see her again, as she’s not in next week anyway!! So I’ll have gone THREE WEEKS without physio by the time I see her again.

Still – things seem relatively good at the moment, so I’ll just have to keep using the TENS machine and hope things stay stable until I see her again …

TENS machine – works for me!

February 7, 2009 at 10:34 pm | Posted in rheumatoid arthritis (RA) | 4 Comments
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My physio suggested recently that I try a TENS machine – and handily enough I’d sort of inherited one and had it sitting in a cupboard at home, but hadn’t thought to use it for ages. TENS is transcutanious electronic nerve stimulation, delivering very mild electronic stimulae through the skin. It works, to put it simply because I don’t actually understand the non-simple explanations, by blocking the pain receptors somehow, so presumably the brain doesn’t know you’re hurting. Like aspirin, it’s blocking the pain but not curing it. However, unlike aspirin it’s actually causing the body (somehow – something else I don’t understand) to create endorphins, which are the body’s natural pain relievers (among other things). Apparently, according to some, several sessions can relieve chronic pain altogether … according to other studies (which I’m not referencing because I’m tired and I’ve had a long day, but if anyone asks I’ll find ‘em!) it doesn’t work at all. I suppose it depends on the individual – from my point of view, what matters right now is that it works for me, and it’s working right now!

I’ve used it both on my shoulders/neck and my elbows, and I have seen an improvement over the last couple of weeks in both. Mind you, since my flare there’s been a general improvement anyway, and of course I’m also having neck manipulation and ultrasound through physio, but I DO notice almost immediate relief when I start using the TENS now, so I reckon something’s going on, and it’s a good something.

It’s important to remember, as a scientist, that it’s blocking the pain but NOT relieving the underlying condition i.e. it’s not doing anything to stop my immune system from attacking itself. Important to remember as a scientist – perhaps important to try and forget as a patient!

Thank heaven for little labels

June 6, 2008 at 7:51 pm | Posted in rheumatoid arthritis (RA) | 4 Comments
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I was doing some transcription the other day and a ‘health professional’ made a comment that some patients ‘do like to cling to their little labels’. She was referring to people who say ‘Oh, I’ve got x, so I can’t do y’ without either making the effort or looking for ways around the problem, but it got me to thinking what a relief my ‘little label’ was! Having had months of unexplained pain, a maybe or maybe not blood test result, and no firm conclusions (which is typical of RA because it’s very hard to diagnose with any certainty) I was developing a fear of some doctor turning round and saying, ‘Frankly my dear, it’s all in your head’; not because I thought it was, but because I knew damn well it wasn’t! I was also worried that friends and family would be thinking much the same thing. Now I’ve got my ‘little label’ if I feel so inclined I can turn round to a friend or a colleague or, as today, the vet, and say ‘Sorry I can’t do x, ‘cause I’ve got RA’ and be reasonably certain of a sympathetic reaction … in the latter case a nurse to carry a very heavy cat back to my car for me! ‘Sorry I can’t do x, ‘cause I get this funny unexplained pain in my arm’ is likely to get nothing more than a stony look that says ‘what a bloody hypochondriac’.

Not everyone feels the same. At a local Rheumatoid Arthritis Society meeting recently and was chatting to a very nice lady there who mentioned that she was on a particular treatment for painful muscles, as well as her RA problems. ‘Oh,’ says I, recognising the name of the treatment because a friend of mine has the same stuff for the same condition, ‘is it fibromyalgia?’ ‘Well yes,’ she said, ‘but I don’t like to use that word because then it labels you, doesn’t it?’ I can see her point. Fibromyalgia is the baby of these aches and pains illnesses – a relatively new term, only ‘invented’ in 1976, plenty of doctors still believe ‘it’s all in your head, dear.’ Just because the term wasn’t coined until 1976 doesn’t mean that the illness didn’t exist before then of course. In fact it was probably part of what was known as ‘rheumatism’ as distinct from ‘rheumatoid arthritis’. Or maybe it is a new condition (although the evidence doesn’t seem to point that way). One of the fascinating facts I learnt at the meeting was that apparently rheumatoid arthritis didn’t exist prior to about two hundred years ago.

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