Tags: fibromyalgia, menstruating, menstruation, pain, periods, R.A., RA, rain, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, weather
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.
Tags: aches, arthritis, flare, Hugh Laurie, Jeeevs & Wooster, Miranda Hart, pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), Stephen Fry, telly, TV, weather
Ouch, ouch, ouch.
It rained all day on Friday, and I had to come home early from work because I was in a significant amount of pain and just not working effectively. It is entirely possible that teaching ‘the boss’ to crochet was not the best move for either my achy hands or our workload, but it was fun!
Ohoh, I thought, here comes a proper flare … then, curiously, in the evening I felt much better (even though it was still wet). The next day I woke up with one of my approximately five-monthly periods! I’ve said before that I often find I’m completely R.A. symptom free while menstruating, and sure enough I was almost symptom free over most of the weekend …apart from period backache of course … well, there’s always something.
It probably helped that we had a beautiful day yesterday, sunny, bright, deep blue autumnal sky, gentle breeze, trees clinging on to the last of their leaves, almost sparkling in a variety of fiery hues … lovely. (Why isn’t fiery spelled firey? Sorry, I have a tendency to go off on tangents like this … you may have noticed.)
Unfortunately it’s been pouring most of the night and it’s still pouring now … and I HURT! ‘The boss’ has a day off today so, as there are only the two of us, I ought to be here manning the (dead quiet) phones, just in case I miss something vital. Not sure how long I’ll stick it though! The problem is, the moment I do decide, ‘That’s it, I’ve had enough!’ and go home, I know some client will ring with something vital. (I even know which client … the same one that picks every single occasion when I’m away to find something urgent that needs doing!)
So I shall probably struggle manfully (womanfully, penguinfully?) on and just collapse these evening in front of some silly comedy on the telly or something. At least I know there is some silly comedy to collapse in front of. There’s Miranda at 8:30 – I’m still not sure about this. It’s only had one outing so far, last week, and it’s very old-fashioned Victoria Wood style humour, pretty basic gags, but the lead, Miranda Hart, is very good. Then there’s huge tracts of the wonderful ‘Jeeves and Wooster’ series to watch, as Hubby got the whole shebang from my bro for his birthday. It’s the series with Stephen Fry and Hugh Laurie in the eponymous roles. (Not sure I’ve used eponymous correctly there, but it’s a great word, isn’t it?) It ran to four series and is ideal to watch when feeling ‘carp’. The script takes a few liberties with the original P G Wodehouse stories, but I rarely find it worries me, and Fry and Laurie have absolutely become Jeeves and Wooster for me, to the extent that when I read the original books I hear Stephen Fry and Hugh Laurie’s voices in my head! (Hmm, afraid that last sentence makes me sound crackers, but never mind … I probably am.)
Right back to work … oh joy … Mantra for the day: “Me gusta mi trabajo, Me gusta mi trabajo, Me gusta mi trabajo…” (I like my work in Spanish … Hoping the mantra might a) help me learn Spanish, and b) convince me that me gusta mi trabajo! (I do … really I do … just not today!)
Tags: aches, arthritis, fatigue, flare, joint pain, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness
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!
Tags: fizzle, flare, pain, pain free, RA, Rheumatoid arthritis, stiffness
I’ve had several virtually pain and stiffness free weeks now – fantastic! But for the last few days I’ve woken up just sliiiiiiightly stiff, and had little bits and pieces of rheumatoid arthritis pain in the evenings and at night … certainly not a flare, not even a fizzle, but just a bit worrying.
I have my six-monthly hospital appiontment at the end of next month and I was joking with my physio the other day that everything would probably jog along very nicely, with just the odd twinge and few minutes of stiffness, until the day after my hospital appointment,when I’d get a flare.
I hope it was a joke … especially as my hospital appointment is 23 December!
Tags: fatigue, hot flushes, methotrexate, MTX, pain, RA, Rheumatoid arthritis, stiffness, tiredness
The hot flushes are back with a vengeance! As anyone who’s ever had them, or has a partner who’s ever had them, will know,that is NOT the good news.
The good news is that although I’m quite convinced from previous fluctuations between hot flushes and no hot flushes, RA pain and no RA pain, that the two are correlated – for me, hot flushes usually means more RA pain and stiffness – this time the RA symptoms remain mild to non-existent. Further indication that the MTX is doing what it’s supposed to be doing.
Even the fatigue has reduced – I’ve had a really busy week – busy at work, making some bits and bobs for a charity stall run by our local sewing group, preparing for my mum’s 70th birthday (the house is full of cake, icing stuff, presents, wrapping etc.) – I had a ‘ladies who lunch’ and shopping trip on Saturday involving 50 minute drive each way to Bury St. Edmunds, and I managed the WHOLE weekend without a day-time nap.
I very nearly succumbed, but just managed not too. I hoped that would guarantee a good night’s sleep last night, but thanks to the hot flushes/night sweats, it didn’t. Oh well … can’t have everything. At least the RA is behaving itself!
Tags: Abatacept, anti-TNF, arthritis, biologic, Cochrane Review, inflamation, inflamed joints, intranasal, NICE, nostrils, pain, recombinant Human Cartilage glycoprotein-39, rhematoid arthritis
Current NICE guidelines say that Abatacept (one of the many biologics, anti-TNFs) should not be used in R.A. patients who have not responded to other biologics. Now a Cochrane Review (a review designed to help policy makers and healthcare workers make decisions on what is and isn’t effective) says that Abatacept IS effective in R.A. treatment. NICE are already in the process of reviewing their current guidance, but a decision is not expected until June 2010. The review strongly recommends that for the moment Abatacept is not used WITH other biologics – but says nothing about use if other biologics have been tried and have failed, which suggests that perhaps NICE should be recommending it for those with rheumatoid arthritis who have failed on other anti-TNFs.
Like all anti-TNFs, how safe it is in the long term has not yet been established – because none of them have been around long enough, but the Cochrane review (by Dr. Lisa Maxwell in Ottawa) showed that patients given Abatacept were twice as likely to achieve a 50% improvement in symptoms such as pain and the number of tender and swollen joints.
In the meantime a study on intranasal administration of recombinant Human Cartilage glycoprotein-39 for treatment of R.A. has failed. Personally I don’t fancy a regular treatment via my nostrils … although if I had moderate to severe R.A. I guess I’d try anything once! However it didn’t show any improvement over placebo, so I dare say I will never need to try that one. Phew.
Tags: aches, arthritis, car, fatigue, fibromyalgia, health, joint pain, one injection cure for RA, pain, RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stress
I was just revisiting my first ever post, about reasons to be cheerful, and I was pleased to see that most of them still stand (the last one doesn’t and one other … if you read it, and if you’ve read some of my other posts, I’m sure you won’t have trouble guessing which one no longer stands! But the point is there’s obviously a lot to still be cheerful about!
While I was at it I thought I’d revisit the nearest post last year to today’s date, and guess what? The car broke down then too! Now that time it cost me an absolute fortune, so another reason to be cheerful is that it’s really not so bad this time. (Although to be honest the car really has got to the point where I should be thinking about replacing her.)
And a final reason to be cheerful is that I’m SO much better, health-wise, than I was this time last year! I was having a terrible time with the RA then – giant puffball knees, every joint aching (or at least it seemed that way) and probably as yet undiagnosed fibromyalgia on top of that! This year it seems that maybe they’ve finally got the medication dosage right (for now anyway) and I’m really doing very well indeed. If that’s not a reason to be cheerful then I don’t know what is! Here’s hoping it lasts – and wishing all my virtual and actual RA friends a similar and long-lasting outcome!
Now if only we could hear a bit more about that ‘one injection cure for RA’ that was being so hyped this time last year …
Tags: aches, fatigue, fibromyalgia, flare, hospital, pain, physio, RA
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!
Tags: arthritis, diarrhea, flu, H1NI, pain, RA, Rheumatoid arthritis, swine flu, vomiting
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!
Tags: 5 HTP, aches, aerobic exercise, amitriptyline, arthritis, consultant, deep sleep, exercise, fatigue, fibromyalgia, griffonia simplicifolia, lack of sleep, methotrexate, NHS, pain, RA, REM sleep, rest, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness, weight gain
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!