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!

My (Super) Hero

October 29, 2009 at 10:42 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
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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

Enormous Cat

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!

5-HTP update – hmm, not working so well now

October 20, 2009 at 3:04 pm | Posted in rheumatoid arthritis (RA) | 5 Comments
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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!!

Some good news!

October 19, 2009 at 10:10 am | Posted in rheumatoid arthritis (RA) | 5 Comments
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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!

I’m suffering from DPS

October 9, 2009 at 5:33 pm | Posted in rheumatoid arthritis (RA) | 6 Comments
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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 Comments
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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!

Dreaming-v-Sleeping

July 5, 2009 at 7:43 am | Posted in rheumatoid arthritis (RA) | Leave a comment
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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

Coping with Fibromyalgia as well as RA – part 2

June 29, 2009 at 1:32 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, rheumatoid arthritis (RA) | Leave a comment
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One really important positive I forgot to add to my last past was that because I already have RA I’ve been through so much of the crap that other people have to deal with when they first get their fibromyalgia diagnosis! I already know ALL about pacing myself (OK, so I don’t do it so well, but I know all about it), I’ve already learnt to deal with the guilt that comes of telling friends I don’t feel well enough to visit or whatever, and I’ve already learnt to live with the, ‘You can’t be ill – you look fine,’ attitude of people that don’t know me well. Perhaps most importantly, I have learned to tell my loved ones when I feel like death warmed up, and not to expect them to know as if by magic. Recently the importance of actually telling them when I felt pretty good also dawned on me – after weeks of feeling lousy, if I have a good day it cheers me up enormously, so it’s important to share some of that cheer with hubby, my mum etc!

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!

Did I Avert a Flare by a Hair?

March 17, 2009 at 12:28 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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Well after my last ‘but feeling OK’ post, I came a-crashing down last Thursday. Just felt awful, dead tired, in lots of pain, the whole shebang. So instead of my usual ‘I’m busy, I must push through this’ approach, I said to myself, ‘you’re the boss Penguin, GO TO BED!’ That IS supposed to be the advantage of being the boss, after all, although usually it doesn’t seem to work out that way.

Anyway, I did that. I got a total of eleven hours’ sleep that afternoon and night, after having had three nights with less than five hours, and while I can’t say I felt like a new penguin on Friday, I felt a heck of a lot better than I had, and I ended up having a very enjoyable and active weekend.

So – I guess this suggests that the OT is right about the vicious spiral and all that, and that I broke the circle/spiral by stooping and resting. Then again … maybe it’s just coincidence. That’s the trouble with RA – it’s so hard to tell!

Oh well – I feel better; that’s what matters!

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