Seem to be OK today …
November 11, 2009 at 2:35 pm | Posted in Me, rheumatoid arthritis (RA) | 15 CommentsTags: 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!
My (Super) Hero
October 29, 2009 at 10:42 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 CommentsTags: aches, cats, enormous cat, fatigue, RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness
Picture the scene: it’s three in the morning and I’m in pain and wide awake. Tim Piggot-Smith has failed me – for once even his dulcet tones reading David Starkey’s Monarchy: The Beginnings haven’t lulled me to sleep. Neither has a podcast of a lecture from the wonderful Dr. Stuart Lee on Anglo-Saxon History – my other failsafe. I’m at my wit’s end.
Suddenly there’s a crash, a bound, and a superhero comes flying through the bedroom window and lands on the bed with an enormous thump. Yes, it’s The Grey Shadow, feline super-hero extraordinaire, to the rescue. A lick, a purr and I’m already feeling better.
Soon the gentle sound of purring has done the trick and I’m fast asleep.
I wake up at around 5:30 and The Grey Shadow has mysteriously disappeared. My ankle’s in agony. Why? Ah yes – Enormous Cat is fast asleep on top of it. I wonder where The Grey Shadow went? He would have been far too considerate to sleep on my ankle.
Thanks to Wren at The Rheuma Blog for reminding me about this incident with her post on wee beasties! What would we do without them? I’d far rather put up with the discomfort of the occasional sore ankle than not have these nocturnal visits from my superhero at all!
Enormous Cat
5-HTP update – hmm, not working so well now
October 20, 2009 at 3:04 pm | Posted in rheumatoid arthritis (RA) | 5 CommentsTags: 5 HTP, fatigue, fibromyalgia, hot flashes, hot flushes, R.A., Rheumatoid arthritis, sleep, tiredness
I don’t know if the 5-HTP (which I’ve been taking for a while to help me sleep, as sleep (or lack of it) seems to be a probable cause for fibromyalgia) becomes less effective after a certain amount of time, but I’ve just recently stopped finding it very effective. My bro takes it sometimes too and he reckons that if he takes it for a while he becomes kind of desensitized to it, so perhaps it’s that.
It was fantastically helpful for a couple of months, but then I started to find that if I woke up, even if it was only an hour or two after falling asleep on taking the tablet, I couldn’t get back to sleep again.
Now the flipping hot flushes have started again, I’m waking up about once an hour and hot flushing BIG TIME. Of course that makes me feel utterly disgusting and I usually have to get up for a bit, after which I’m wide awake for a few minutes. Only a few minutes doesn’t sound so bad, does it … until you realise that this is happening six times a night or so.
Surprise, surprise – the fibro is coming back. Off to see my lovely cake-recommending physio this afternoon so that will help, but I fear I’m going to have to try the meds that the consultant recommended months ago but that I’ve been avoiding as the side effects include weight gain. (I know, I know, my favourite lecture is about how you mustn’t assume you’ll get all the side effects going, but I know when it comes to me and weight gain I’m doooooomed!)
Any advice on getting rid of the flushes (or packets of roasted soya beans in the post, and instructions on the uses thereof, Maggie, if you’re reading this) would be much appreciated!!
I’m suffering from DPS
October 9, 2009 at 5:33 pm | Posted in rheumatoid arthritis (RA) | 6 CommentsTags: arthritis, fatigue, methotrexate, MTX, RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness
I was given temporary hope on this post from Warm Socks at Infinity-itis (Sorry, I can’t find the infinity symbol anywhere) on methotrexate side effects. Remicade Dream commented that she always had a mental fog on MTX day. Ahah, I thought, my problems of extreme dippyness (and fatigue) this week must have been caused by my increase in methotrexate.
I felt better for a minute – hurrah, all I have to do is blame the meds.
Then I realised the horrible truth – I take my m-m-m-m-methotrexate on a M-M-M-M-Monday and I was still being just as dippy yesterday … I actually forgot to go to a client meeting! (Thankfully she’s a nice person and happens to work in the next-door office, so a quick phonecall from here and I was there in a flash.)
Hubby has now identified the true root of the matter – I’m suffering from Dippy Penguin Syndrome. Unfortunately it is, as yet, incurable.
Oops! Pill trays are NOT infallible!
October 7, 2009 at 6:44 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, Me, rheumatoid arthritis (RA) | 4 CommentsTags: arthritis, fatigue, medication, pill tray, pills, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stress, tablets, tiredness
I wondered why I was feeling so peculiar this morning … put it down to the fact that hubby and I both slept terribly last night, as did half of Norfolk if hubby’s patients’ comments are anything to go by. Now I wonder if it was more than that.
When I got home this evening I went to take my evening pills (augmented at the moment with antibiotics for the lump doing Vesuvius impressions on my arm) and found it empty.
I then had a vague memory of taking my pills after breakfast this morning and thinking, ‘Odd that I forgot to take them before breakfast as I usually do!’
You guessed it – I didn’t forget to take them before breakfast. I had my evening pills about twenty minutes after my morning pills.
I think I should probably be panicking and phoning NHS Direct and stuff, but given that that was now nearly 12 hours ago and I’m still sitting here writing this, I figure there’s probably no need. Luckily the only apparent ‘side effects’ were the desire to eat a horse (not literally of course, although who knows what went into the pasty I ended up having, most unhealthily, for lunch) and a feeling of general wooziness which may have had nothing to do with it given that a) I did have a lousy night and b) I’ve been feeling dopey all week!
5HTP update – The Dream of the Crazy Penguin
September 25, 2009 at 10:19 am | Posted in rheumatoid arthritis (RA) | 1 CommentTags: 5HTP, dreams, fatigue, fibromyalgia, Rheumatoid arthritis, seratonin, sleep
I have been taking 5HTP for my fibromyalgia now for several weeks, and my overall verdict is that IT WORKS! My sleep pattern has improved enormously … although Spain did cause a temporary blip! I now get to sleep far more quickly and easily than ever before, and generally if (when) I wake up in the night, I find it easier to get back to sleep than I used to.
I must also be getting better quality sleep because my dreams are SO much less interesting on the whole! I think this is because I’m having less dreams and more deep sleep.
Just to give you an idea of the difference in dreams, here’s a pre-5HTP typical dream:
Pollyanna Penguin is driving along a 5-lane motorway and suddenly realises she’s lost. Cars are whizzing past on both sides. PP panics, starts to swerve … but it’s OK, suddenly the car is flying. Weee … PP still doesn’t know where she’s going but sails happily over the rest of the cars to a beautiful tropical island. Suddenly hubby is in the car too. They land and … do what penguins and their hubbies like best for a while, before realising the cats are missing. Then a huge panicked chase and attempt at cat herding ensues with much yelling and running around. (At this point … if not before, I’m usually tossing and turning in the bed, throwing the covers around and shouting my head off.)
Post 5HTP dream:
Pollyanna Penguin is driving along a 5-lane motorway and suddenly realises she’s lost. Cars are whizzing past on both sides. PP pulls over and wakes hubby up and gets him to look at a map. They work out where they’re going, hubby takes over the driving and PP admires the view. The end.
It’s a bit boring but so much more restful – my fatigue problems are definitely reduced these days. I can cope with a few boring dreams if I feel this much better for it!
I’m not having a good morning
August 28, 2009 at 6:29 am | Posted in rheumatoid arthritis (RA) | Leave a commentTags: fasting blood test, fibromyalgia, research study, sleep, spiders, stress
Woke up at 5.30 and my iPod (normally life, or at least sanity … or at least remains of sanity saving at this time of day) was out of charge … because I fell asleep with it on last night!
So I crept out of bed so as not to wake hubby up, thinking I might sneak an early coffee and breakfast as he’s on a fasting blood test (more of which later if I get round to it) and can’t have anything until the nurse has been round at half-past-seven.* Of course I instantly woke him up and now he’s up too … so much for that plan.
So I thought I’d charge my iPod and I put my PC on … only to find a small spider running in and out of the keyboard. Fortunately I’m not arachnophobic … unfortunately I’m a big softy and don’t want to squash the damn thing … and arachnaphobic or not, frankly I don’t fancy the idea of it running up my fingers and down my arms … eeeeeeeeeeeooooooo.
Oh yes, and the reason I can’t sleep is that work is really stressful right now …
So this thing about getting enough sleep and avoiding stress … I think I’m having some problems with it right now. Now where did I put those coping strategies … probably somewhere under that enormous pile of work …
* Before you faint at the idea of a nurse coming round at 7.30 (especially Frankie) she’s not NHS – she’s part of a research study … obviously a well funded one! More on that later though.
5Htp for Fibromyalgia … and a dose of morning stiffness thrown in
August 18, 2009 at 1:19 pm | Posted in rheumatoid arthritis (RA) | 3 CommentsTags: 5HTP, arthritis, fatigue, fibromyalgia, insomnia, morning stiffness, RA, restlessness, Rheumatoid arthritis, sleep, stiffiness
Well I got my 5Htp (5-Hydroxytryptophan) in the post yesterday and gave it a try for the first time last night. 5HTP is a plant extract which is converted to serotonin in the liver, and serotonin, amongst other things, helps to sort out the balance of sleep – the lack of which is suspected to lead to fibromyalgia. It’s all a bit uncertain and unproven but my sister-in-law-to-be, who has had fibromyalgia for some time, reckons it does help her, so I thought I’d give it a try.
Well I certainly slept like a log yesterday and feel better for it today. Whether it was the 5Htp or the fact that I had an exhausting, though thoroughly enjoyable, weekend, I’m not sure! I shall keep using it through the week and see how I go.
One thing I did notice was that for the first time in a long time I woke up with quite a bit of morning stiffness. Luckily that was at 5.40am, so by the time I needed to get up at 7.00 it had worn off (and yes, I did have some sleep between 5.40 and 7.00!)
I do wonder if a more solid, deep and peaceful night’s sleep does lead to more morning stiffness, because my usual sleep is SO disturbed that my body isn’t resting in one place for long, so the joints don’t have the opportunity to get stiff. My consultant did one of those looks over his glasses when I suggested this a while back, but it seems logical to me!
Dreaming-v-Sleeping
July 5, 2009 at 7:43 am | Posted in rheumatoid arthritis (RA) | Leave a commentTags: fatigue, fibromyalgia, Loudon Wainright II, RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness
I love the song Dreaming by Loudon Wainright III, although he must have written in it one of his more depressed moments and it usually makes me cry, but I realise that I definitely can’t agree with the sentiments (which is no bad thing!), and in particular the last verse, so here’s his last verse and my fibromyalgia and RA-induced response!
Given that last night I dreamed I was a vampire with amnesia who had no idea why a friend of mine had vanished, because I’d forgotten I’d had her for breakfast, you can see why I’d rather have a good bit of deep sleep!!
Part of Dreaming by Loudon Wainright III
I’d rather be dreaming than sleeping
Just sleeping you’re just as well dead
In dreams I can fly
In dreams I don’t die
That’s why I lie here in this bed
Just sleeping you’re just as well dead
Sleeping by Pollyanna Penguin I
I’d rather be sleeping than dreaming
I think about dreaming with dread
In sleep I can heal
In sleep I can’t feel
That’s why I lie here in this bed
No sleep and you’re just as well dead
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 CommentsTags: 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!
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A bit about me
My name is not Pollyanna and I'm not a penguin. If you'd not worked out the last bit you should probably stop reading this and seek out a psychologist.
This is a blog about me and rheumatoid arthritis - sounds like fun, huh? Well I'm hoping it'll be a bit more fun than it sounds - hence the Pollyanna part. I'm going to try to stay positive about it and play 'Pollyanna's glad game' - finding reasons to be cheerful basically.
If you really want to know more see the 'About me' page.
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