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, 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: 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!This is enormous cat. You can tell it’s not The Grey Shadow, in spite of the general similarity in colour and size. The Grey Shadow wouldn’t be seen dead on a pile of washing!
Tags: 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!!
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: 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.
Tags: 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!
Tags: 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!
Tags: arthritis, fatigue, flare, pacing myself, RA, Rheumatoid arthritis
Feeling sooooo much better after two excellent physio sessions that I went shopping straight after the last one, came home, unpacked it all and attacked my much neglected embroidery, in the meantime sorting out bits and bobs relating to Spain (not least of which is that I’ve finally got the itinerary, but due to a small mix-up, still not got my e-ticket). I am now feeling somewhat shattered and trying to persuade myself that the best thing to do is STOP. Fortunately I won’t take much persuading as I know if I keep going I’ll just put myself into another flare just in time for my little trip. So … night night everybody …
Tags: 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!