Tags: acceptance, aches, arthritis, flare, flare-up, joint pain, knee, neck pain, normality, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, tiredness
I’ve been thinking a lot lately (although writing very little!) about what ‘acceptance’ of RA means, and also about redefining my idea of ‘normal’. I hadn’t managed, and still haven’t managed in fact, to get my thoughts into words, but I think this afternoon I came as close to ‘acceptance’ as perhaps I ever will.
As I was relaxing in the bath (sorry, probably ‘too much information, especially for those that know me!) and letting my thoughts drift along pretty randomly, I started to think about some of my friends and colleagues: one’s still coping with the aftermath of the Japanese earthquake; one’s recently widowed; one’s, to put it bluntly, losing her marbles; one’s spending this weekend picking up the pieces in her house, since large swathes of the downstairs flooring were dug up on Friday to find a leak.
Good grief, I thought – I’m bloody lucky! I have a loving (and all-round fab) husband, a terrific family (especially the nearest and dearest, including the recent addition of Mrs Mooseface), I have great friends, I enjoy my job, I have time (never enough time of course, but some time) to indulge my passions of messing around with textiles, drawing and pottering about in bits of nature, and although one could always be better off financially, the finances aren’t a complete disaster! The interesting point is that at no point during these thoughts floating over the bubbles did I consider, ‘Yes, but I do have this bloody disease to deal with, so perhaps not so lucky after all.’
It’s not as though things are going great with the RA at the moment either. I wake up every morning in pain, although it often clears for the most part within the hour. I go to sleep most nights in pain. I have pain and stiffness during every day. This is perhaps extra frustrating because for around four months between a flare in March and sometime around August, I felt as though I was pretty much fine, almost symptom free, nearly in remission. And yet, in a way, this on-and-off low-grade (for the most part) pain has just become the norm for me. It’s just another thing to put on one side and live with – and yes, I do appreciate I’m lucky that I can put it on one side at the moment, it’s not so bad that it stops me doing all those things I consider myself lucky for, but what interested me was the fact that it was so far into the normal, everyday that I didn’t even give it a thought when considering other people’s problems and drifting into comparing my life to theirs.
I think I might have once ranted that I will never ‘accept’ this disease, and don’t even mention the word ‘embrace’ in the same breath as rheumatoid arthritis, but perhaps this is acceptance, Penguin-style.
Tags: aches, arthritis, doctor, exercise, flare, flare-up, GP, joint pain, medicine, methotrexate, NHS, pain, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), steroids, stiffness
This perfectly innocent post title, no double entendres intended, is supposed to set the 1950’s scene for you. Maggie (friend and frequent commenter on this blog) has always said that the town where I live is like stepping back into the 1950s, and generally I reckon this is a pretty good thing. The 1950s is a pretty nice, cosy, friendly place to live; that is until you get hit by … da da da daaaa, 1950’s Doctor Man.
Alas, the knee has continued to flare and I decided, after having a lot of stiffness and pain yesterday, that I really should go back and say a) the steroids worked but they ain’t workin’ no more and b) can you ask the physio to have a look at the knee please? So I did. Of course, as I’ve mentioned before, if you make a ‘same day appointment’ (and the choice is same day or 2.5 weeks away if you’re lucky) then you can’t choose your doctor; you just see whoever is available.
Now when I did this two weeks ago I hit the jackpot with Dr Locum Eye-Candy, but alas, this week my luck ran out and I got 1950s Doctor Man. Now don’t get me wrong, he was pleasant enough in a dried-up old stick kind of a way, and true to his 1950s roots he did listen patiently and he did actually bother to examine me properly (two things you certainly can’t count on these days in the NHS!), but then the downside of being in the 1950s kicked in, and I got the 1950s lecture about RA. I thought things had come on a lot since this kind of thing: ‘Well, that’s the nature of the disease. It’s a progressive disease I’m afraid and it will flare now and then. Now, I’m not trying to depress you but really that’s just the way it is and there’s not a lot you can do about it. You’re on a high level of methotrexate and other medication already, so … ’ And so on, and so on, for about five minutes.
I’m not actually saying he’s entirely wrong, by the way – fundamentally that’s probably true, but he didn’t make one single suggestion about sensible things I could do. OK, I wasn’t expecting him to suggest Reiki or a gluten-free diet or anything else that your average 2011 British GP would consider a bit ‘far out’, but what about, for example: exercise … or rest, apply heat … or cold, consider a steroid injection in the joint, come back if it gets worse, have physio, get hubby to do all the cooking, washing up, shopping etc. for the next few weeks. <Grin – of course he wouldn’t suggest that! Not the done thing at all in the 1950 to have a man doing all that!>
I must admit I wasn’t feeling very ‘with it’ and I damn near forgot to actually ask what I’d gone in to ask, which was since I was doing a 50 minute round trip every week for ultrasound treatment on my shoulder at the moment with the physio, could he please ask the physio to treat the knee too? Finally I did remember, and, give him his due, he agreed immediately and not only that but he actually wrote me a note (with his very smart 1950’s fountain pen) to take in with me, hopefully circumventing the need to wait five weeks for the next official appointment for a knee referral, by which time the flare will probably be over.
I did also ask him whether I should be exercising it or resting it, and he said definitely resting it … but is this right, I wonder, or is this just more 1950s medicine. Not that long ago the only recommendation for RA was ‘bed rest’!
Tags: aches, arthritis, flare, flare-up, joint pain, NHS, pain, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatology, stiffness
I posted a while ago about how the physios at the hospital ‘in line with the private sector’ were limiting appointments now, and generally becoming officially less flexible and less helpful. Well I had further proof of how in line with the private sector they aren’t on my last visit.
When I previously went for physio I had been referred for my shoulder, but when the knee flared up, knowing it was all RA, she did some work on the knee too. Now, and this is no way the fault of my physio herself I should add, it’s a typical NHS ‘powers that be’ decision, even though I couldn’t bend or straighten my knee fully, had been to the GP, had got oral prednisiolone and had had it confirmed that my knee was flaring, she couldn’t do any ultrasound on my knee at all. Because it was too inflamed? Nope. Because she wasn’t sure it was the right treatment? Nope. Because I had been referred only for my shoulder!
Fortunately the knee is actually very nicely on the mend by itself, and equally fortunately the ultrasound on the shoulder (actually the acromoclavicular joint, but I can’t keep spelling that!) has helped enormously, so not THAT much to whinge about. Also I have a cunning strategy up my sleeve if the knee doesn’t mend fast enough or gets worse again. I don’t know if it’ll work but my cunning plan is to phone the GP, explain the situation and get them to give me the referral letter, so that I can walk into the physio next time and say, ‘Here’s the letter – can you do my knee now please?’
Otherwise it’ll be the usual ‘five weeks from referral’ and I’ll be going in for six sessions for my shoulder, which will be over before the referral for the knee is officially through. This is not only a problem because if the knee needs doing it needs doing a.s.a.p; it’s also an issue because it’s 50 mins to an hour driving time to and from the hospital IN WORK TIME! So glad the NHS are working towards keeping everyone in work! HAH!
Tags: aches, arthritis, doctor, flare, flare-up, GP, joint pain, joint stiffness, NHS, oral steroids, pain, prednisolone, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, steroids, stiffness, stifness
I’ve read a lot on the net about oral prednisolone and generally I’ve thought, ‘Hmm, glad I don’t need any of that then …’
Me and my big mouth …
Anyway, here’s why. I woke up Tuesday morning and my left knee, which is where I had the major, major, MAJOR problems in 2008 but which has been relatively OK since, was stiff … I mean REALLY stiff, as in couldn’t straighten, couldn’t bend. Oh well … it didn’t last long. It stayed a bit stiff until about lunchtime and then wore off. It didn’t hurt at all so I decided not to worry about it. ‘One of those things,’ I said to myself, ‘one of those little unpredictable joys of R.A. No doubt that’s the last I’ll hear from that knee for a year or two.’
WRONG! Woke up yesterday morning and the knee was really stiff again, but instead of wearing of by lunchtime it didn’t wear off all day! It still didn’t hurt so I thought, ‘Oh well, maybe it’ll be OK tomorrow.’
You guessed it – this morning it was really stiff again and it hurt (just a bit, but it did hurt). It also felt as though someone had strapped a great big lead weight around it, which says ‘swollen’ to me, although it’s not actually noticeably hot or inflamed. So I gave in and took the doctor lottery – i.e. ‘same day appointment with a member of the same day team. We can’t tell you who you’ll be seeing and it may be a doctor or a nurse.’
Well it was obviously my lucky day because I saw Dr. Locum Eye-Candy, and apart from being eye-candy he also seemed pretty switched on and sensible and (mostly) listened to what I had to say. OK, so he got slightly confused and when I’d said, ‘This started on Tuesday’ that somehow got translated in his brain to, ‘This is an ongoing problem I’ve had for months’ – but hey, we got that straightened out pretty quickly, so I’ll let him off! (Also perhaps I got a little confused. He was GORGEOUS – made it hard to concentrate on why I was there … Hmm, hubby will proofread this for me later. Perhaps I should take it out … nah … )
So here I am about to experience my first ever oral prednisolone – oh lucky me !
On the bright side, I am taking minimal quantities and assuming it works I will only be on it for three days, so I don’t anticipate any problems. In fact I anticipate a miraculous cure. Let’s hope I’m right. I don’t always hate it when my predictions come true!
Also, on the really, really, really sunny side, IT’S NOT AN INJECTION INTO THE JOINT! (Or indeed an injection into the bum, which is always mildly embarrassing, and would have been ever more so if Dr. Locum Eye-Candy had been giving it to me!)
Tags: aches, arthritis, doctor, GP, joint pain, neck pain, pain, physical therapy, physio, physiotherapy, R.A., RA, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I suppose I must try to be more fair to my poor beleaguered doctor. There I was complaining the other day that the doctors don’t think my ‘migraines’ are related to my ‘shoulder pain’, and things were getting worse and worse. My shoulder pain was getting to the point where I was waking up many times a night because of it, and the headaches were getting worse too, so I thought better give it another shot. So I finally got the appointment with my GP – who has referred me for physio for my shoulder, as I’d hoped she would – and I said, ‘You know – I’m convinced these migraines I keep getting are related to my shoulder pain.’ I got the usual quizzical look … and then inspiration struck. ‘The thing is,’ I added, ‘it’s not actually shoulder pain, and … erm … I don’t think they’re actually migraines!’
Well, unsurprisingly that did put a rather different complexion on the matter. What I tend to refer to as ‘shoulder pain’ is actually pain the acromoclavicular joint (try spelling that after a glass of wine) – which is the joint between the collar bone and the front part of the arm, so not really the shoulder at all. And although the headache I mentioned in that last post was definitely a classic migraine, most of the headaches I’ve had recently haven’t been. They have been one-sided, but instead of being behind the eye they very much feel like they’re outside the skull, and if I touch my scalp on the painful side it’s really tender. They’re just as painful and debilitating as migraines but without any visual disturbance or sickness. When I managed to explain all that (and I don’t know really why I hadn’t managed to do so in the past!), she thought it was highly likely that the two were in fact related. Apparently headaches like the one I just described are common with neck pain, and my acromoclavicular joint pain is probably actually closer to neck than shoulder pain.
So a mystery solved, one less medical professional to feel frustrated and irritable with, and a referral to physio. All in all a very positive outcome to a visit to the doctor!
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: arthritis, disease progression, joint pain, joints, Omega-3, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Very interesting article in the New Scientist this week – thanks to Maggie for pointing it out – about Omega-3, the promises, the facts, the bits in between … It’s not only about joints, but all the things that it’s claimed Omega-3 can help with, and what proof there is, or isn’t, to substantiate them. It seems that ‘isn’t’ mostly about covers it – but when it comes to arthritis, “There is evidence that omega-3s’ anti-inflammatory properties remove morning stiffness and reduce the amount of anti-inflammatory drugs needed [...] but it doesn’t stop the progression of arthritis and it does not protect the joint or prevent further deterioration. It only dampens down the pain.” Well, I don’t think anyone’s actually claimed that it does stop the progression of the disease, and hey, anything that reduces morning stiffness and dampens down the pain is a plus in my book! Guess I’ll keep swallowing those horse pills then!
Tags: aches, arthritis, computers, computres, exercises, flare, joint pain, neck pain, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stiffness, stress
I’ve got two different rather odd pains to add to the usual mix at the moment! One is a burning pain that I get intermittently in my spine, a few vertebra down from my neck. It’s not too bad, just a bit odd, a bit burny and a bit tingly. Bizarrely, my physio thinks this is a sign of a bit of stiffness. Does anyone else get stiffness manifesting as burning?! Well, she’s given some exercises for flexing the upper thorax, and if they work then I guess she’s right.
The other one is that, having found ultrasound fantastically helpful for ages now, I’m suddenly finding it incredibly painful on my acromioclavicular joint. (Excuse my showing off my knowledge of joint names – it took ages for my physio to teach me this one and I rarely get the chance to use it … it’s the little insignificant (until it hurts) joint between the shoulder and color bone, right at the front.) It starts off alright and then it very quickly gets incredibly sore and painful. Physio says she’s come across this happening before but she doesn’t know why, and she wonders if it’s just a bit more inflamed than usual.
I hope it’s NOT more inflamed than usual. Did I speak to soon about averting a flare? Today certainly didn’t help on the stress reduction front – all clients want their work now (if not last week), and one thought I could proofread 90,000 words in two weeks. Well, I could if I had nothing else to do … grrrr… Oddly enough I feel more stressed now with both computers working than I did yesterday with both computers not working. Does this say something about computers, I wonder?
Tags: arthritis, consultant, DMARD, doctor, hydroxychloroquine, joint pain, methotrexate, MTX, National Institute for Clinical Excellence, NHS, NICE, NRAS, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I got my shiny new NRAS magazine through the post today. Great to see an article by Rheumatoid Arthritis Guy in there! Well done RA Guy! But there’s always something in there to get me aeriated, and the first magazine of 2010 was no exception!
Interesting also to see a two-page spread on the ‘European Fit for Work Report’. Frankly, I’m not sure there were that many surprises in there, although I was a bit surprised at the number of people who become ‘work disabled’. Apparently 40% leave work altogether within 5 years of diagnosis, which is not happy reading. However, it appears that the main reason for this is people being diagnosed and treated too late or incorrectly. The report recommended ‘new and more inclusive methods to evaluate the cost-effectiveness of treating musculo-skeletal diseases in particular; one that considers more than the up-front costs of medical expenditure and incorporates wider social and economic factors.’ No kidding. In other words, this report recommends doing exactly what NICE doesn’t do. The article goes on to say that ‘NICE in the UK has already begun such a deliberation, although no decision has been reached to date.’ No surprise there then!
Now, my honorable friends, please turn to page 12 of your NRAS magazine. Don’t have one? Not to worry – here’s the headline: ‘People on Enbrel stay in work longer’. It goes on to state that a 500-person study (the COMET study if anyone’s inclined to look it up) showed that those with active early RA were three times less likely to stop working if treated with MTX and Enbrel, rather than MTX alone. Absenteeism was also reduced by almost 50% for those on the combination therapy. But here’s the rub – NICE won’t allow anyone to start on a combination therapy like this until they have been proved unresponsive to at least two other DMARDS including methotrexate … so when does early stop being early? It takes, I would think from my own experience, at least six months to show that a DMARD is not working for you, because it can take them that long to start working. So you’re diagnosed (probably not immediately), you’re given a DMARD if you’re lucky, perhaps hydroxychloroquine, for six months; it doesn’t work. You try MTX (either on its own or in combination with HCQ) for another six months. That doesn’t work either. You’ve now been diagnosed for at least a year. Is this still early enough to count for this study? Perhaps it is. If so, fair enough. If not then are NICE ruining people’s chances of staying healthy yet again. I don’t know the answer – I just pose the question.
And finally to a little article by a brave lady called Jean Burke, who works with NICE to provide a patient viewpoint in their deliberations. Rather her than me but I am full of admiration. Apparently she was asked by a member of an appraisal committee ‘Surely a twenty percent increase in quality of life isn’t worth bothering about?’ Well, I suppose that’s why they need the patient viewpoint. If you’re reading this blog as someone with RA I imagine you’ll see it her way immediately; I know I did. She points out that if the extra 20% means she can make a cup of tea in the morning, go to work or walk to the shops then yes, it’s worth it!
So long as NICE remains in its ivory tower, untouched by all these deliberations about the socioeconomic effects of diseases and so on, I simply cannot see how the system can ever work effectively.
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