Tags: arthritis, butterfly rash, diagnosis, lupus, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, ystemic lupus erythematosus
You may think RA is a hard one to diagnose, and I’ve often heard complaints as to how it’s overlooked by medics and the public alike, but Lupus (or Systemic lupus erythematosus to give it its full name) is RA’s poor relation in this respect. Lupus is another autoimmune disease, but this time with the autoimmune system attacking connective tissue – and of course connective tissue occurs in all the internal organs as well as joints, so it can cause inflammation of all sorts of parts of the body, resulting in a bizarre set of symptoms that is often not diagnosed as one problem i.e. Lupus, for many years. I suspect that one reason is that GPs etc. would only recognise it from the famous ‘lupus butterfly rash’ that occurs on the cheeks and across the nose, but according to Wikipedia (and I don’t know where they referenced it form!) only 30-50% of Lupus sufferers ever display the rash at all. Some research has been done now in America to show that Lupus might be caused by a malfunctioning of ‘micro RNAs’, which are things that white blood cells use to control the function of antibodies etc. This is research in mice, something that a lot of people would find uncomfortable but which I’m not going to get into a discussion about here; from a purely biological point of view, however, diseases in mice show a remarkably good correlation to diseases in humans, and the mice show a consistent pattern of ‘dis-regulated’ micro RNAs when they develop Lupus.
What that means is that, probably ten years or so down the line, if it gets that far*, there could be a simple diagnosis ‘kit’ for Lupus, where it can be clearly and easily diagnosed with a blood test or similar, whereas at the moment there is no such test – various tests can hint that it might be Lupus or some other autoimmune disorder, but then again it might not, but there’s nothing conclusive.
Like rheumatoid arthritis 1) it’s quite likely that there are a lot of people out there who are in the early stages and undiagnosed and 2) with Lupus it’s known that many people are either undiagnosed or misdiagnosed for many years before they are given a diagnosis of Lupus, so a test that is as conclusive as this sounds like it would be would certainly be very good news indeed.
We then have to hope of course that the test itself is not so expensive that no clinicians will actually pay to use it, but that’s another story, and probably one we won’t have to worry about for another ten years or so!
Tags: positive thinking, R.A., RA, reframing, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, tiredness, weather, work
I’m feeling a lot better at the moment. Exercise obviously is the cure for or ills! (Well perhaps not, but I think it might have helped a bit! Perhaps it’s browsing books that made me feel better!) Anyway, in spite of feeling better physically I woke up yesterday with a major ‘Monday morning feeling’ and a distinct grump on about the fact that we’d had too really gloomy days over the weekend and yet last Friday and this Monday (when I had to work, of course, or in Friday’s case would have been working if I hadn’t been at home with my head under a pillow trying to shift the latest migraine), we had gloriously sunny, spring days.
Then I decided this was not the positive thinking penguin I wanted to be! So I ‘reframed’ and started to think, ‘Hey, at least I can glance out of the window and see blue sky and the promise of spring, even if I do have to work.’ Then at lunchtime I managed to reframe, ‘Oh heck, we’ve gone a bit quiet at work, will we have enough to keep us going?’ to ‘Ooh, goodie, we’re a bit quiet. I’ve got time to go for a nice walk at lunch time and enjoy the sunshine.’ And I did. I only went up and down the high street, popped into a few charity shops and had a browse (got seriously tempted by a knitting machine, but that’s another story) but mostly just wandered up and down soaking up the sun (in a well wrapped kind of way, given that it’s still February!) but I felt so much better for it, and so much better for seeing the aconites starting to flower, bright yellow splashes of colour that are definitely the heralds of spring round here! (It was the primroses where I used to live, in Devon, but here it’s the snowdrops and the aconites.) Anyway, I’m feeling much better for it – and hoping that today will bring a bit more sunshine and another chance for a walk … although my fears about lack of work were groundless, as a load more has come in! Even so, I shall jolly well make time for a walk at lunch time!
Tags: arthritis, migraine, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), shoulder pain, stiffness, stress, tiredness, work
Hmm, not feeling quite so fine any more! I had to finish work early yesterday because I woke up with a headache and it just got worse and worse until I finally realised it was a migraine. My migraines usually start with handy visual effects that flag up, ‘Hello! I’m a migraine’ straight away, but of course I was probably asleep at the point where those were happening, so I missed that.) Although it was one sided, it wasn’t that bad when I woke up so I just took paracetamol. It just niggled away all morning, and eventually I thought ‘migraine?’ and took a migraine tablet. by then I suppose it was waaaaaaaaaay too late.
At about three o’clock it was getting really bad – feeling sick, couldn’t see properly out of my right eye, bad pain … definitely time to give up and go home. Fortunately hubby had the day off and was there to get me tucked up in bed with an ice pack, a darkened room and middle-sized cat (who purred so loudly at the unexpected pleasure of an afternoon snuggle that I was very glad my migraines aren’t affected much by noise – only light!)
I felt slightly better by about six and was able to eat some dinner, which made me feel better still, but still completely washed out. I didn’t do anything all evening except watch a bit of telly once the headache had gone.
Still, at least woke up this morning headache free. Just one small problem … they’re painting at work! Aaaaargh – the smell of paint is bringing the headache right back again! Not sure how long I’m going to last this time.
Interestingly I’ve got pains in my right shoulder for the first time in a while, coinciding with a migraine over my right eye. I’m fairly convinced they’re related … but the doctors aren’t!
If there’s anybody out there that gets migraines that they think are related to their RA Pain, I’d love to hear from you!
Tags: aches, arthritis, exercise, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), stress, work
Is it too late to make another New Year’s Resolution? So far the first and only two aren’t going so well … eat less, exercise more. I’ve managed one exercise ‘session’ and then come down with a very painful period … which is usually an excuse to eat more, exercise less!
Anyway, the new one is to try not to let a day full of minor frustrations build up into one major bad mood!! This morning will be testing. It’s not nine o’clock yet and so far:
- I woke up at 5:50 am with a very painful back (period) and hip (who knows, maybe RA?), to hear the pitterpatter of not so gentle rain on the roof. Oh goody, another wet and painful day!
- I checked my emails to find I’d managed to slightly upset a client. (Long story I’m not going to go into here, but let’s just say I’d anticipated that, and of course it’s his fault, but still not nice to have it confirmed.)
- I went into the kitchen to make my lunch and found that Middle Sized Cat had spilt his water all over the floor. Needless to say, I found out by stepping in it.
- I chopped up a variety of bits and bobs for my salad, and then threw them on to the floor and into Middle Sized Cat’s refilled water bowl!
- I was running a bit late coming into work and then had a minor run-in with an idiot driver who thought that he had the right to pull out round a stationery bus into my side of the road because he drove a BMW and I only drive a Corsa. Wrong! Genevieve (my car) and I don’t like to be bullied, so we carried on. He wasn’t actually drawn up with the bus yet and had heaps of room to pull over on his side, but he sat there for a minute, pulled right out onto my side of the road and glowering because he thought I should have waited for him. HA! Anyway, we won that one at least, but it didn’t make me feel any better – just cross about more things!
So here I am, sitting at my desk, telling myself that none of these things are exactly a major crisis – especially as both hip and back ache have now gone – and that I should pull myself together and plan for a GOOD DAY.
Erm … so far it’s not working. Part of me is going, ‘Come on Penguin, positive thinking and all that … smile and the world smiles with you and all that jazz.’ The other part’s going, ‘Oh shut up you stupid old bat. I’m entitled to the odd bad mood if I want one!’ Have to wait and see which part wins!
Actually, seeing them all written down on the page helps rather to see just how trivial each individual incident is; the trick is just not to let the frustration build up. I feel better already!
Tags: arthritis, consultant, doctor, GP, NHS, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), thyroid
OK, here’s the thing – the geniuses at my local NHS physo department (or should that be genii?) have decreed that in order to ‘be in line with the private sector’ they will only give any patient a maximum of six appointments before they kick them out. (The last three words are, of course, my terminology and not theirs!)
I asked Lovely Physio how this was ‘in line with the private sector’, as I had had to have quite a bit of private treatment before I got into the NHS programme and oddly enough they hadn’t been anxious to see the back of me after six appointments. No surprise there – I was paying them. Why would they want to be shot of me? She said something like, ‘I have no idea, but that’s how they’re presenting it to us!’
I suspect the idea is that by ignoring the fact that there are people with chronic conditions who can benefit enormously from regular therapy and pretending that everyone they see can be ‘cured’ in six appointments, they can massage their figures by getting the waiting list down from the current five weeks to a more ‘in line with the private sector’ one to three weeks.
The complexity of the system emerges from the fact that it’s general practitioner budget that pay for this treatment, but once you were being treated, until now, it was up to each physio to decide when and if to discharge. The GPs had little or no say, but they had to pay. So the idea is that you now have your maximum of six appointments and then go back to the GP if you feel you need to still see a physio, to get re-referred, as I mentioned in the previous post. The GP can, of course, say no. I suspect if I see the one that knows me she would say yes … we’ll have to wait and see, but even if she does we’re looking at a five-week waiting list right now.
One silver lining in the cloud – they have an SOS system whereby if I need to see my physio in the next couple of months I can phone and make an appointment saying I’m on the ‘SOS list’. I can then go in under that and have maybe six appointments then before getting kicked out! Hopefully I won’t need to see her in the next two months, but last time I thought that I only lasted three weeks …
Unfortunately I feel I have very little fight in me at the moment – I don’t know if that might be something to do with the thyroid issues i might or might not have, but that’s the way it is!
Tags: anti-TNF, arthritis, flare, hospital appointment, NICE, nurse practitioner, physical therapy, physio, physiotherapy, R.A., RA, RA flare, Rheumatoid arthritis
I was on my way to my six-monthly (ish) hospital appointment this morning, and feeling distinctly glum, most definitely not wanting to go, when the news came on the radio and cheered me up slightly. Some excellent news for UK RA patients generally, I’m delighted to say: NICE has reversed its ludicrous policy of refusing to treat patients who failed on one anti-TNF with another. Anti-TNFs are not all the same, so saying that because a patient fails on one they won’t benefit from a different one is patently absurd, but that’s exactly what NICE, the patently absurd National Institute for ‘Clinical Excellence’ had decided to do. From later this year though, patients who fail on one anti-TNF will be allowed another go. (I think only one more go, but that’s better than none!)
Hopefully I shall never need to worry about this from a personal point of view as I seem to be doing well on the methotrexate. Inevitably the three-week flare I’ve just come through has now passed (just in time for the hospital appointment, of course) and didn’t show up in the bloods, so it’s not being taken at all seriously. Still, on the bright side it DOES seem to be over, so next time I shall just have to gird my loins and nag the hospital while I’m HAVING a flare, if only so they get to see it!
So that was the mildly irritating.
The bad is physio – not my physio of course; she’s still lovely. But apparently, ‘In order to be in line with private practice’ they are going to restrict all patients to a maximum of six appointments before a re-referral is required. It’s a very confusing system which I’ll explain in another post, but I can probably get re-referred. However, if I normally have physio twice monthly, I’ll have to get rereferred every three months and then wait around five weeks for an appointment, where presumably I won’t be guaranteed to see my lovely physio and will be reassessed each time, even though after a couple of years I think between the two of us we have a pretty good idea of what works! (Anyway, more about this whinge later!) The bright side is that I have at least had her for around two years, and when I started seeing her I thought then that they’d kick me out after six appointments, so I suppose I can’t complain. (Oh wait – yes I can …)
Tags: butterflies, flare, Me, orchids, Rheumatoid arthritis, walks, Weeny
Flare notwithstanding, I managed to get myself up to the north Norfolk coast again to stay with Weeny and her hubby and go orchid hunting last weekend. I had several rest and stretch stops on the drive up, and once there we stuck to relatively local places to keep the drives short, and pottered slowly! We were particularly on the hunt for Bee Orchids and Early Marsh Orchids.
Well we found Early Marsh Orchids in abundance, and Common Spotted Orchid, and possibly another one I haven’t identified yet but might be Southern Marsh Orchid, but not a Bee Orchid in sight. Since we have a bad habit of dismally failing to see what appears to everyone else (usually in the butterfly line, as at least orchids can’t fly away) we assumed it was just us being dense, but after spending all morning at it Weeny wandered off to get a couple of ice creams (handily sold in the nature reserve building) and got chatting to one of the volunteers who told her the Bee Orchids were late this year and there’d been no sign of them at Holme so far.
The chirpy chappy then said, ‘But if you want to see some pyramidal orchids, there’s loads of them just down that path, at the end of the pine trees on the right … ‘ Well … they’d done the butterfly thing and flown away I reckon, or as Weeny suggested pulled up their roots, packed their suitcases and wandered off when they saw us coming!
Clearly it wasn’t going to be our day for orchid hunting …
Cut to Wednesday night -hubby and I are off for the weekly shop. Hubby is frowning at the lawn and starting to mutter about mowing it. This happens about once a month – the rumbles start a few days before the actual mowing as a rule, and I was trying to persuade him to see sense and leave it another two or three days until the gardener comes. Not sure comments like, ‘It’s so long already that another few days won’t make a difference’ really helped my cause! Anyway, I’d dragged myself off to the car, and suddenly heard a yell behind me, only to see hubby squatting on the front lawn going, ‘Penguin – come here a sec … is this what I think it is?’
Can you guess what it was?
Yes, we’ve only gone and got Bee Orchids growing in our front lawn!!!
We’ve only found two so far but there might be more if I can just keep hubby and the gardener away from their manly mowing duties. What is it about men and an obsession with short grass? The one that hubby spotted first, which is in flower (will post photos later) has clearly already been mown once – you can see part of a leaf and the top of the flower spike has been cut off!
Tags: aches, arthritis, depression, doctor, fatigue, flare, flare-up, GP, hospital, hypothyroidism, joint pain, methotrexate, MTX, pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stress, T3, T4, thyroid, thyroxine, tiredness, TSH
I went for monthly MTX blood tests today and remembered to ask if the thyroid results were normal – I’d assumed they were, since no one at the surgery had bothered to contact me. They weren’t.
Having said that, they weren’t all that abnormal either, so what are we doing about it? In their case nothing as yet, in my case getting rather confused …and cold …and tired … and achy … but mostly just confused. Until I went in and asked for the results I thought a thyroid test was just that, one test, one answer – OK, not OK, whatever. But no … it turns out there’s a test for thyroid stimulating hormone (TSH) which is produced by the pituitary gland and stimulates thyroxine production from the thyroid gland. Then there’s tests for the two types of hormone the thyroid gland itself produces, thyroxine (T4) and the other one whose name I can’t remember (T3). Counter-intuitively, if you have lots of TSH sloshing about it means your thyroid might be UNDER-active, because you have to produce a lot of TSH to get the thyroid to do anything at all. If you have loads of T3 and/or T4 (produced by the thyroid gland itself) then you obviously have an overactive thyroid as the thyroid is producing loads of the stuff. If you have very little then clearly you have an under-active thyroid.
Symptoms of the latter include feeling cold when it isn’t (box ticked), weight gain or difficulty in losing weight (box ticked), muscle aches (box ticked), abnormal menstrual cycles (oh yeaaaah!), decreased libido (what’s libido again, somebody?), irritability (well … erm … guilty) and memory loss (not sure, can’t remember). However, my levels of T-whatever – not sure if they tested for T3, T4 or both, are in the normal range. My level of TSH though is just outside the normal range – just a smidge too high. As a consequence the docs have decided to wait and see. I can totally understand the logic of this – apparently it does fluctuate and it’s not as if it’s wildly off the scale, so try again in another month and see if it’s still high, and if the levels of T-whatsit have decreased or not.
Really – I can totally understand that – but it’s just sooooo frustrating, as I sit here grumpily shivering, with period pains! (Oh yeah, and a flare just to increase the fun.)
One interesting thing – apparently the most common cause of hypothyroidism (under-active thyroid) is an autoimmune problem. Surprise, surprise!
As to the confusion – I’ve just about got it straight in my head that there are all these tests and roughly what they’re for, but nowhere can I find clear guidance as to what is and isn’t normal range for any of these tests – it seems that for TSH it used to be considered that up to 5.5 was OK, now they reckon about 4.5, or maybe 3.5, or sometimes 2 depending on who you ask, and apparently some authorities in the UK reckon up to 10 is fine! I’m just going to go off and find a nice sandpit to bury my head in for the next month.
Tags: flare, R.A., RA, relaxation, Rheumatoid arthritis, sleep, stress
In the spirit of this blog being positive, here’s the antithesis to the post below. Ten good things to do during a flare – but of course it only applies if you’re me, ’cause everyone’s flares are different!!
1. Take it easy.
2. Take time off work.
3. Really – take time OFF work.
4. Listen to your own excellent advice about taking time off work.
5. THINK – try to be slightly more aware of hands and feet BEFORE you do dumb things!
6. Keep as active as possible – but don’t force yourself.
7. Do everything you can to get to sleep and stay that way at night! E.g. Take 5HTP, take paracetamol just before going to sleep even if you’re not sure you need them, listen to Bill Bryson reading one of his books in his gentle, soporific voice (or Tim Piggot-Smith reading David Starkey, or anything by Stile Antico)
8. Eat sensibly and TRY not to comfort eat!
9. Learn to count.
This flare I have managed to take note of 1-4 and 6-7 this time, and I am feeling A LOT better. I’ll try harder next time and see if I can manage all ten … well nine … well eight really …
Tags: arthritis, flare, R.A., RA, RA flare, Rheumatoid arthritis
1. Say “Of course I can carry the tray!”
2. Run downstairs wearing only socks. (It feels like you’re walking on marbles.)
3. Say, “No – don’t you come up. I’ll bring the dress down for you to look at.” (’cause then you have to take the dress back up to keep it away from the cats … and then come back down.)
4. Tell yourself a browse around the local garden centre won’t hurt a bit.
5. Push a big, heavy door open with the flat of your hand.
6. Assume you can overtake the little old lady with two sticks walking in front of you along the street.
7. Get depressed when you can’t overtake the little old lady with two sticks walking in front of you along the street.
8. Swing your arm up without thinking to get something off a top shelf.
Actually I think that’s all the dumb things I’ve done over the last two days pertaining to my flare, but I think eight is enough – don’t you?