Tags: arthritis, Arthritis Research UK, exercise, fatigue, flare, inflamation, knee pain, National Arthritis Week, pain, R.A., RA, rheumatoid, stiffness
It’s National Arthritis Week in the UK from 12-18 October and Arthritis Research UK are running a ‘story wall’ in its honour. My story (in 250 characters, which is a bit mad, but there you go, we’re the Twitter generation!) is up there somewhere on the wall – or will be soon. Why not go and put yours up too? You can see the wall here and put your own story up here.
10 million people live with Arthritis (in all its various forms) in the UK and Arthritis Research UK do a great job in supporting us, so I’m very happy to support them with their efforts for the week. They not only fund research, but also provide patient talks around the country so that we can find out what’s happening research-wise. Hubby and I went to a very interesting one a couple of months ago given by my very own rheumatologist – not that he recognised me – after, I haven’t had a six-monthly appointment for nearly two years, as the hospital keeps cancelling them – but that’s a whole nuther story! Posting about the stuff he was talking about is on my very long list of things to do!
I got latched on to by a very pleasant lady who tried to assure me that all I needed to do was take cider vinegar and honey to be cured. Strange that she was there and very clearly not cured, and yet still spouting this stuff. Funny, things people.
Anyway, I digress – please support Arthritis Week – there’s loads and loads of stories up on the wall already but the more the merrier, and it all goes towards helping arthritis research.
Tags: aches, arthritis, doctor, exercise, flare, flare-up, joint pain, methotrexate, MTX, NHS, pain, R.A., RA, rhematoid arthritis, rheumatoid, rheumatoid arthritis (RA), rheumatology, work
I woke up yesterday morning with really bad pain in my hip/lower back, but by lunchtime it had passed off, so I had a lunchtime walk yesterday as usual, and very pleasant it was too, until about half-way round, when I got a very sharp pain in the side of my foot, just behind the little toe. (Same leg as the hip pain.) By the time I got back to work the pain was coming in short, sharp bursts lasting up to about 10 seconds and then was fine in between … but in between wasn’t very long! It was happening at least twice a minute. I took paracetamol and, three hours later, ibuprofen, but to no avail. We had to go shopping that night and I limped around the supermarket and then asked hubby to drive home as I was in too much pain. It wasn’t the worst pain I’d ever experienced but it was BAD. My foot just in that area was bright red and swollen, so that sounds like RA, but the odd coming and going of it doesn’t seem quite right. I THINK it was RA and I’m just a weird patient!
Anyway, of course being Monday last night was m-m-m-methotrexate night. I went to bed still in a LOT of pain, and woke up in the middle of the night thinking, ‘OOOH, my foot hurts’ and then again, some time later in the middle of the night, I think around 3:30, thinking ‘OOOH, my foot DOESN’T HURT!’ And it hasn’t hurt since. I have no idea what’s going on or why, but MAYBE it was lucky that that happened on a Monday and the methotrexate kicked in. I don’t think it’s supposed to work like that though, is it? It’s supposed to be a slow build-up, not a week by week thing. Perhaps it was just a short, sharp flare-ette and just finished then. Perhaps it wasn’t RA at all. They mystery of what is and isn’t RA is certainly … mysterious …
That reminds me of the time a few weeks ago when I was getting sharp pains and bad headaches that felt like they were on the outside of my skull. Not the first time this has happened, you may recall. Oh dear, I thought, I hope this isn’t giant cell arteritis – I think it’s that sort of symptom … and then I realised I was wearing a hair-slide that was being pushed into my head by my transcription headphones! Much relieved that I worked this out by myself and didn’t bother the poor, overworked GP with it!
Anyway, the good news is that the answer seems to be ‘not to flare’ at the moment, but I’m having a day off walks this lunchtime just in case it happens again!
Tags: arthritis, exercise, hospital, NHS, nurse practitioner, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness
Physio: Good morning! So, we’ve been doing acupuncture on your shoulder, yes?
Penguin: <Feathers on end, eyebrows raised> NO!
Physio: Oh … you seem very definite about that.
Penguin: Yes … I am.
Physio: Erm … what have we been doing then?
Penguin: Some exercises and some frictioning [a kind of massage on the tendon]
Physio: Oh yes, and how was that going?
Penguin: Well the frictioning last week really seemed to help.
Physio: Great. Let’s do some more of that then. Now, the exercises, it was this one, with your arm bent, raising up and out, yes?
Penguin: No …
And so went most of the session. Having said all that, she did do the frictioning and it did help, and once we’d established what exercises I was doing, all went relatively smoothly.
THEN she turned on her computer (with my notes on it of course).
What had happened was that I had the first appointment of the day and she’d obviously been running late and thought, ‘Never mind, I’ll wing it.’ So, a word of advice to health practitioners everywhere – don’t! I’m sure it took her longer to find out what she was supposed to be doing than it would have taken to turn on the computer before we started!
Tags: aches, arthritis, beans, diagnosis, doctor, exercise, fibromyalgia, joint pain, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, shoulder pain
If I had to come up with a list of the top ten things I never thought I’d be saying, that’s got to be up there among them!
I had a physio appointment yesterday for my dodgy shoulder – the one the doctor said was RA and would probably need a joint injection. Well … according to the physio it isn’t and it won’t … and I think she’s right. She thinks it’s likely to be inflammation relating to a previous episode of joint inflammation which caused the joint capsule to swell, so that the muscles around the glenohumeral joint, the ‘rotator cuff’, were pushed about a bit and got inflamed as well. The joint problem seems to have died down, leaving the rotator cuff problem zinging away like a good’n, unfortunately.
Apparently one in three people over the age of forty have a rotator cuff problem anyway, nothing to do with RA, so it might not even be linked, but since I’ve had no injury etc. to exacerbate it, it probably is.
Anyhow, this physio seems to have had prior training as a torturer, although she assured me that she started as a physio straight out of uni last year, but I’ve got to admit that with her heavy and darned painful massage, ultrasound and various exercises, the shoulder is a whole lot better already today, although she says it will probably take three months to heal completely … and that’s if I’m a good penguin and keep remembering to put my nose on my elbow!
Yes, that’s one of the bizarre exercises I have to do to stretch the muscles. Stand feet about a foot from a wall, rest my forearm on the wall in front of me with my upper arm at right-angles to the shoulder joint and then … rest my nose on my elbow, for about three minutes a day, but not necessarily all at the same time. It really does stretch those muscles! Looks extremely odd though. I can hardly wait to do it in the office and entertain the junior penguins! (Or perhaps I’ll just slink off to the loo and do it there!)
The other main exercise involves lying on the bed with a can of beans and doing a kind of weight-lifting thing. At least having a can of beans by the bed makes it easy it to remember to do the exercise!
Tags: aches, arthritis, exercise, fatigue, joint pain, knee, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, tiredness, work
I’ve spent the last six months on a very useful course run by our local university business school, on helping small businesses to grow. It’s been great and I’ve met some lovely people along the way. Tonight we were asked to do a ‘showcase’ where each of the businesses on the course had a little exhibition stand and said a few words into a mike and generally chatted to invited guests, university bigwigs, previous course attendees and each other.
Unfortunately I was dreading it because I knew the admin was a mess. Fortunately although the admin was a mess, a handful of very brave people had stepped in at the last minute to salvage what they could, and they did a marvellous job. However, as suspected, when we arrived to set up our exhibit, rather than the floor-plan with everyone’s tables labelled, display boards there and of course, vital for me, and definitely requested in advance, CHAIRS, there was organised chaos.
Fortunately the wonderful people who’d stepped in at the last minute were on hand to sort everything out, and equally fortunately we’d brought some folding chairs with us! I did feel sorry for some of the others though, as there were no chairs available at all.
Having said that, once the evening got going I hardly had a chance to sit down, as we were all buzzing about and chatting to each other. There was a really good atmosphere and, in spite of not looking forward to it, we had FUN. On the other hand, I’m absolutely wiped out, completely shattered, totally exhausted … and my left knee is giving me gyp from so much standing around.
Entirely my own fault of course. I had a chair, I have the capability to sit down in it, but I suppose it was partly not wanting to miss out on anything and partly the old not wanting to admit I had a problem, leading to one of those conversations. You know the ones: ‘My auntie’s got arthritis too. It’s all cleared up though since she started rubbing in bindweed’ or ‘all you have to do to get rid of it is lose some weight.’* What I should have done was go and have a chat with the yoga lady and get her to give me some stretching exercises – but every time I looked in her direction (at least right up until the last few minutes) she was deep in conversation.
Oh well, working from home tomorrow so I think that might start with a bit of a lie-in!
* Not that I’m denying that would help!
Tags: aches, arthritis, exercise, fatigue, fibromyalgia, joint pain, knee, neck pain, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stiffness, stress, tiredness, weather, work
Well more split Penguin really – my right side is ready to take on the world this morning, but my left side just wants to go back to bed with a hot-water-bottle (or perhaps Enormous Cat on hot-water-bottle duty). This is not my usual pattern – usually I have, for instance, a bad knee and a worse knee, or a pair of bad shoulders, but this morning everything on the right is fine but my left hand, elbow, shoulder and knee are all stiff and painful!
I rather suspect that this has as much to do with fibromyalgia than it does with RA, because although the knee and elbow feel joint-related the shoulder is definitely muscular … well, when I say definitely it’s actually hard to be sure I find, but it doesn’t feel like the usual rheumatoid arthritis pain. I’ve had a few problems in the last few days with it, having foolishly swung round to grab something behind me on Saturday and then found myself curled up in a ball on my chair going, ‘Ow, ooops, I really shouldn’t have done that’.* Unbelievably I then did exactly the same thing twice on Sunday! It’s such a dumb thing to do for someone who knows damn well they get problems in neck and shoulders! I blame the fact that they’d felt so good lately that I’ve been less aware of having to be careful … which I suppose is something I really can’t complain about.
Oh well, I have a mountain of work to get through today thanks to the over-enthusiasm of a colleague on Thursday who, forgetting I was on my own for the first half of the week, may have bitten off more work than we can chew, so I’m going to have to let the right side rule!
*This is the expurgated version
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, 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, exercise, occupational therapist, occupational therapy, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), wax bath, wax bath therapy
I’m slightly confused because my lovely physio has suggested wax bath therapy for my hands … and referred me to an occupational therapist for it. My confusion arises from the fact that I would have thought that wax bath therapy was a physio sort of thing to do and definitely not an OT thing! I wonder if the OT will say the same when I see her? I wonder how long it will take to see her, given that it took seven months to get a physio appointment.
Anyway, if anyone has ever used a wax bath could they let me know; I’d be really interested to know if it helped at all. I did find a research paper that said it could be helpful in RA if combined with exercises but not on its own – well my hands certainly get plenty of exercise with all the typing and craft stuff, and I do some simple range of motion type exercises in the mornings too, so perhaps the wax thing will do some good.
Tags: arthritis, doctor, exercise, flare, flare-up, hospital, neck pain, NHS, nurse practitioner, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Wren posted a comment asking about physio and I thought it might get a bit long-winded for a comment answer, so I’m making a post out of it!
This was Wren’s comment – sorry Wren, just realised that this answer is going to come a bit too late for your appointment! “On another subject: How often do you see your physio (physical therapist)? What do you do at the appointments? Are there special exercises? I’m curious because I keep reading of others having PTs they go to frequently, but this is something that I’ve never done, or even had suggested by my doc. I’m seeing him on Saturday morning, and I plan to ask about it, but in the meantime, how does this work for you?”
I personally see my physio every two weeks at the moment, but that’s a timing that we decided between us and it’s changed over the months I’ve been seeing her. I started seeing her weekly when things were really bad and we’ve moved on to two weekly. We tried three-weekly but that didn’t work out – by the time I saw her after three weeks my shoulders were in agony!
There are indeed special exercises, but again they’re entirely individual to each patient. I think it’s fair to say that generally you don’t do any exercises during a flare, reduced exercises during a “fizzle” (if you have fizzles, as I do!) and you try really hard to do them when things are fine, but frequently forget! Luckily I have a very understanding physio (this is afterall the woman who recommended a year’s supply of cake, but she says I’m not allowed to post that story!!) and she appreciates that it’s hard to remember to do the exercises when things are good!
What we do at the appointments is 1) Talk through how I’ve been over the last couple of weeks since I’ve seen her 2) Decide what needs doing this time 3) Do it. Usually, what needs doing is either ultrasound on my knee(s) or ultrasound on my neck and shoulder(s) or both. Again, I’m lucky to have such a flexible and understanding physio. By the time I got to see her, I’d been seeing another physio privately for months. Long story – see here and we’d established that ultrasound works for me. Again, it’s a very personal thing. Some people find acupuncture fantastic, especially, apparently, for knees – I don’t. Some people find ultrasound completely useless – I don’t.
If there’s a different joint giving me problems we’ll talk through that and discuss if there are any exercises that might help, or whether ultrasound, TENS etc. might help.
I have a whole selection of exercises that I should do regularly for my neck, shoulders and knee, and a bunch of others to ease morning stiffness in other parts of me. The knee, neck and shoulder exercises are more to strengthen the muscles in those parts, so that they can do a better job of supporting the joints, rather than to actually do anything to the joints themselves.
The attitude of the nurse practitioners is ‘use it or lose it’, so the consensus seems to be that the more you exercise (within limits), the better. Not being the world’s most active person the only time I’m likely to overdo those limits is when I’m having a flare (where minimal exercise is fine) or if I’m doing crochet, embroidery etc. and don’t want to stop although my hands hurt!
I hope this helps explain the whole physiotherapy/physical therapy thing a bit, but it is, I stress again, only my own very personal viewpoint, and I know that every physio is different (because I’ve seen at least five over the years) and every patient is different. I reckon if you find a physio that suits you it can only help, so why not give it a try?