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!

Of course the relaxing didn’t last long …

March 3, 2009 at 8:32 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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Having had a wonderful relaxing day on Saturday, I felt full of beans on Sunday and did lots of sorting out and tidying, as well as a thrilling trip (this is sarcasm, for those of you who might doubt it) to the DIY store. Of course I was pretty shattered by Sunday night and no longer feeling the benefits of Saturday. DOH! I really should know better by now.

At least enormous cat and middle-size cat did their best to make me relax in the evening. I was trying to do some embroidery and it involved wielding a huge embroidery frame – the two of them made sure that was quite impossible as enormous cat sat on my lap and middle-size sat on my chest. Tiny cat remained aloof, but I think she was laughing.

The cats certainly do seem to often know when I’m really not well and make a point of coming and snuggling up, but I think this time it was just a case of enormous fancying a lap and middle-size getting jealous!

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