Tags: aches, arthritis, doctor, exercise, flare, flare-up, GP, joint pain, knee, NHS, pain, physio, physiotherapy, prednisolone, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, steroids, stiffness
Well, yes, the knee flare was completely over … for a few days. I was just getting back into the swing of things, gradually building back up the length of my lunchtime walks from a few hundred yards to half a mile, to three-quarters of a mile … thinking I’d soon be back to the mile-and half … and then I woke up in the middle of last Friday night thinking ‘Ouch!’ I’m telling myself it’s not really flaring this time … I haven’t decided yet whether I’m lying to myself.
I certainly don’t want another dose of prednisolone just yet… if they’d even give me one, which I doubt. Having said I never have side effects, Carla happened to mention that sleeplessness and irritability are major side effects of pred, and guess what… I had a really sleepless and irritable week while I was on it – I just failed to attribute it to the pred. Now it all makes sense. And OMG, the night sweats!! I had no idea that was a side effect and I get hot flushes anyway so I just thought, ‘Coo, bad hot flushes, much worse than usual!’ I was slightly worried that this was more than hot flushes as the ‘sweats’ part was a whole lot more dramatic …again, I hadn’t realised this is a common side effect of the pred.
Now I’m still ALL for the steroids – the side effects, now I realise that’s what they were, were horrible, but the flare was much, much worse. The side effects I personally experienced were definitely the lesser of two evils and the pred let me carry on with my life and work, which I couldn’t have done without it. However, having said that, it does make the thought of another does quite unappealing if it can be avoided.
This time round the knee’s not hot, it’s not especially swollen and it’s not actually madly painful … it’s stiff but bendable, so really quite different to the definite flare I recently experienced.
Remember those knee-strengthening exercises I was doing, so that if I flared again I would have strength in the surrounding muscles and hopefully come out of it faster? No? Well you wouldn’t because I forgot to post about them. Unfortunately I have also forgotten to do them for the last few months, which is a pity really because I suspect that’s what the problem is now. As a horribly unfit person, having a bit over a week practically off my feet means I do need to build up those muscles etc. again and I think the minor pain and stiffness I’m experiencing is probably all about that.
So, spend goodness knows how long fighting for a doc appointment, to be told, if I’m lucky, that they’ll refer me to physio, which will take six weeks minimum, by which time I hope I’ll have recovered anyway, or just carry on and hope? I’m going for the latter at the moment. Wish me luck!
Tags: aches, arthritis, blood test, cats, doctor, flare, flare-up, GP, hospital, joint pain, knee, medicine, methotrexate, MTX, NHS, nurse, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness
Thanks to the state of the NHS today (which, if you read this blog often you will know I harp on about endlessly) it is simply not possible to have a relationship with your GP these days (unless you’re incredibly lucky or live on some tiny island that actually has its own GP or something!) My GP practice has around 10 GPs plus locums. It’s pot luck who you get to speak to when you call and they phone you back, and then if they decide you should be seen you won’t see the person you spoke to that morning.
It also seems that they don’t have much of a relationship with the hospital and seem to have some sort of mythic belief in the power of the rheumatology helpline, as I’ve also mentioned before.
The patient calls the GP because they have an RA flare. This is a shocking waste of the GP’s time because these lucky, .lucky patients have an RA helpline that they can call and that will solve all their problems. They can speak to a lovely nurse* straight away and the nurse will wave her magic wand, waggle her magic pixie ears and solve the patient’s problem.
* Actually that’s the only true bit – the one we have at the moment IS a lovely nurse!
The lovely nurse, or even a secretary or receptionist, never EVER answers the helpline. It is an answerphone. That’s the way it’s set up. It’s not an answerphone on odd occasions when they’re exceptionally busy, it’s ALWAYS an answerphone. The message on the helpline says something like: ‘If you’re calling about a non-RA related problem, please call your GP. If you’re calling to change an appointment, please call reception. If you’re calling about an urgent need, please call your GP. If you’re calling to buy fish, please contact your fish monger. If you’re calling to moan about Brexit, please contact your MP. If you’re calling because you’re a moron, voted ‘Leave’ and can’t work out what a helpline is for, please call someone else and bother them. Now, if you really, really want to leave a message, we suppose you can. Give us your hospital number and name and telephone number and we’ll try to call you back in 24 hours – but no promises mind.’
I don’t know about you (actually I probably do, if you have RA) but I consider a flare pretty urgent.
While in an ideal world I would sit back on a couch, watch the telly and let my servants feed me grapes while I rested my knee and waited to see if it would clear up on its own, I do actually have a life (and no servants, and hubby is great but also has a life, and the cat just ain’t interested in helping), so I can’t just sit about and rest it. On that basis I can’t wait potentially 48 hours or more for the helpline to phone, and the nurse say, ‘Call your GP and get some prednisolone’ because then I can’t call the GP until Monday as 48 hours is Friday morning and by the time I’ve heard back from the helpline the GP has run out of appointments. By that time I will have been flaring for over a week!
What Polly did Next
So … I went to the appointment grudgingly granted me by the grumpy GP. (Ooh, nice alteration that penguin!) Fortunately it’s with a much more pleasant locum GP than the one I spoke to on the phone. Unfortunately of course she doesn’t know me from Adam (or strictly speaking, as a doctor, she can probably spot I’m not Adam from the wobbly bits, so I should say she doesn’t know me from Eve). This means that she doesn’t know if I’m a moron or not, and therefore has to assume I am, as we always have to cater for the lowest common denominator.
‘How can I help you?’
‘I’m having an RA flare in my knees, as usually particularly in my left knee. It’s stiff, not very flexible and painful at times.’
‘Have you called the helpline, because really -‘
‘Oh, and what did they say?’
‘I said I’d called them, not that I’d spoken to them!’ I then explained, gently, ’cause she was a locum and therefore wouldn’t necessarily know any better, the realities of the helpline. (I didn’t mention Brexit or fish mongers.)
‘Hmm, you had a blood test only yesterday and your bloods were hardly elevated at all.’
‘They never are.’ The mere fact that my bloods are even a smidge elevated is a pretty strong indication of a flare with me. Sometimes I flare and there’es no indication whatsoever in the bloods. Now this is where a doctor relationship would come in handy. If she’d actually known me, known that I’ve had RA for nearly ten years, known that I’ve had umpteen flares in my left knee, known that blood tests are not a helpful indicator with me, known that I have a brain, we could have skipped the pointless bits, more of which are coming up.
‘Ah, well let’s have a look.’ Prod, poke.
‘Did that hurt when I pressed there?’
‘No, I just thought I’d make screamy gurgling noises for fun.’ (Nope, I didn’t really say that either, I just said yes.)
‘Can you bend it?’
‘This much.’ Demonstrated a very slight bend.
‘Ah. Have you tried pain killers… like paracetamol?’
I’m afraid I just looked at her and laughed, finally managing to choke out a ‘yes’, followed by ‘interspersed with ibuprofen.’ She looked amazed that I’d been able to think of painkillers all by myself.
‘Well I’ll prescribe a course of steroids. Now if they don’t work, we’ll have to consider other possibilities like osteoarthritis, as they should work for RA.’
‘Well, they’ve worked every other time I’ve had them, so touch wood that they will this time too.’
‘Oh … right.’ Look of mild astonishment, either that I’d had them before (it’s in the notes dear) or that I actually knew that I’d had them before, who knows.
So I thanked her very nicely, ’cause I’m a well brung-up penguin … and I might run into her again, and off I went to the chemist to get my steroids.
Again, after nearly ten years of RA, I think I recognise an RA flare when I see one … I really hope I’m not proved wrong and that the steroids do work again this time and it doesn’t turn out to be OA. That would be sooooo embarrassing after this post!
Tags: aches, arthritis, fatigue, flare, joint pain, knee, methotrexate, pain, RA, reaction, Rheumatoid arthritis, stomach upset, stress, tiredness, work
Well the knee is certainly a whole lot better and I’m now tapering off the steroids – I ended up with 11 days on 40 mg and then a taper down to nothing. The bad news is, not surprisingly, it’s not 100% better yet, and so far I haven’t managed a full day’s work since this started. Fortunately (not from a financial standpoint, but otherwise) we’re not that busy right now. I’m not too worried as that’s often the case in January and there are things simmering away that should come in over the next few months, and it does mean that if I just can’t manage a full day then so be it. At least the boss can’t get cross with me! (Having said that, I’m probably my own harshest critic, so I guess I can get cross with me!)
On top of the whole knee thing, yesterday I had what was pretty much certainly a full-blown methotrexate-related stomach upset, so I’m very glad now that I’m going on the injected stuff in a couple of weeks! Feeling OK today, if a little tired, but I was a complete wreck for a while last night – thank heavens for Imodium is all I can say!
Still, even if I don’t last all day today at work, I’m confident that I’ll be doing so by the end of the week, so things are on the up! I hope things are going well for all of you too.
Tags: aches, arthritis, GP, hospital, joint pain, knee, NHS, nurse, nurse practitioner, physical therapy, physio, R.A., rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness
I can’t believe I haven’t posted since June. I wish I could say that that’s because I had nothing, RA-wise, to post about, but that wouldn’t be strictly true. In fact throughout June, July and August I probably did have ALMOST nothing to post about, but, although I’ve kept off those dratted antiinflmmatatories, things aren’t quite so hot now.
It’s just little niggly things at the moment – niggly knees mostly, as it always is with me, plus waking up in the night and finding my right-hand index finger is very stiff and very painful. I have a horrible feeling this relates to my increase in crocheting lately, and I’m wondering if I’ll be able to complete my Diploma in Crochet … although thankfully there’s no time limit so if it takes me a week to crochet a 4″ square, so be it!
And talking of crafts, I’ve just been to the Knitting and Stitching Show at Alexander Palace – a 3.5 hour journey there, mostly by coach, a 4 hour journey back (due to the coach almost breaking down but managing to limp to our drop-off point in the end!) and a loooong day browsing the exhibitions (so-so), trade stands (fabulous yearly treat for a rural type with few local craft shops!) and enjoying a workshop too (Dorset button making). We went on the Friday and it knocked me FLAT for the rest of the weekend but it was worth it!
I also had my hospital appointment not long ago. To my astonishment it went very well – they called us in individually, so again we didn’t have to line up like ducklings behind the mother-duck nurse, and there was a new rheumy nurse there (well, new to me, and young) who was absolutely delightful – she hasn’t had the soft, caring side knocked out of her by working too long for too little and too many hours at a time … yet. She was very sympathetic and very helpful about the knees, which were playing up at the time, although more from the medical (go on, have them drained, it’s not that bad – hah, like she’d know!) side than the practical ‘help yourself’ side of exercises, cold compresses etc. And thereby lies, in my non-expert opinion, one of the biggest problems with any giant organisation such as the NHS. It’s inevitable that everyone has their own specialties, but they do tend to get siloed. She didn’t offer me physio – but then again … I didn’t ask. In all honesty I didn’t feel I needed it, and perhaps neither did she! I know how to manage the low-level pain now – sometimes I may need reminding, being a dopey penguin, but I do know!
And that lack of ‘joined up thinking’ leads to the next thing – I got a letter recently asking me to ring the surgery to discuss ‘some blood results from the hospital’. Slightly worrying that – especially as it arrived on a Thursday, I didn’t get it until Thursday night and I was off to London on Friday, so couldn’t ring until Monday. Anyway, I rang on Monday. ‘Oh’ says the doc. ‘They want us to check your cholesterol risk.’ And ‘quite right too’ I hear you say. ‘You’re overweight and you should do something about it and they’re right to be vigilant.’ Well, yes, but here’s the thing … the surgery themselves had just checked my cholesterol about three weeks before and established that I was low risk.
If the nurse at the hospital had asked me about it, instead of sending me off for bloods and not even telling me she was checking that, I could have said, ‘They’ve just done that at the surgery. This is my level, I’m apparently low risk.’ Instead, lovely as she was, she wasted the following resources:
- A blood sucker (aka phlebotomist)
- The lab doing the work on the cholesterol
- The hospital secretary
- The surgery secretary who sent out the letter
- The GP who had to call me back and discuss what we’d discussed three weeks before
‘Joined up thinking’ is no longer the buzz phrase of the day, and it sadly didn’t work when it was, but a little bit more of it would be a wonderful thing.
Tags: aches, Eye, joint pain, knee, R.A., rhematoid arthritis, rheumatoid arthritis (RA)
Thanks for all the comments. Well, we made it back today, and successfully collected the fabric. (If you have no idea what I’m talking about then you’ll need to read the previous post!) Run4Joy – not sure about ‘spry’, the knee isn’t perfect … in fact neither knee is as good as it was a couple of days ago, but both are much, much better than yesterday!
Maggie, good point! We made it back and this time we got to the nature reserve – and very lovely (and flat) it was too. You can’t see in the picture above but between us and the church there’s a lovely river (the River Dove), teaming with damselflies and dragonflies. Most of the (very small) reserve is a wild flower meadow, so a jolly nice place to visit in the summer!
Carla, I’m sure you’re right – I had been overdoing it, so we had a very short and leisurely walk around the reserve and then headed back home and put our feet up. Poor Hubby, having done all the driving two days running … not to mention the drive up to the coast on Friday night for a walk around Cromer, Blakeney and Wells (did I mention I might have overdone it lately?), was more in need of a feet up afternoon than I was!
Tags: aches, autoimmune arthritis, blog carnival, joint pain, knee, NHS, pain, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, stress, tiredness, WAAD, WAAD blog carnival, work, World Autoimmune Arthritis Day
This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” I hope I’m not cheating, but I’m going to describe two days – one just post diagnosis and one post-“control” where I am now!
4:00 am A day in March 2008
Wake up hurting – everything’s hurting. My neck and shoulders are very stiff, my back aches, my feet are killing me, one arm is numb and the other has pins and needles going from shoulder to finger-tips – but oddly only the little and ring finger.
Worry – a lot. Come on, I was diagnosed as ‘likely’ are in November last year, and definitely in February – so how come it’s still not sorted. OMG, what if it never does get sorted? Am I going to end up a wheelchair? Will I cope? Will hubby cope?
And where the heck is that physio appointment they promised me months ago?
4:00 am A day in March 2014
7:00 am March 2008
Wake up feeling completely un-refreshed and cursing myself for having spent an hour in the middle of the night worrying instead of sleeping. Worry some more as I creak my way gradually out of bed, gently testing bits of me to see how mobile they are. The relief of shaking off the pins and needles and then plunging my hands into warm water is enormous.
7:00 am March 2014
Wake up, blinking the ‘sleep’ out of my eyes. Slight stiffness. Hubby draws the curtains and says, ‘How’s the Penguin?’ ‘Stiff and achy,’ I reply, but then I realise that this is nothing to how it felt a few years ago, really NOTHING, and instantly feel a bit better.
7:30 am March 2008
Take a hydroxychloroquine and a diclofenac and wonder if they’re helping or not. I know I have to wait another couple of months to find out. It’s frustrating!
7:30 am March 2014
Take a hydroxychloroquine and an ‘arcoxia’ cox-2 inhibitor. I had to stop taking the diclofenac eventually after a nasty stomach upset – the arcoxia are supposed to much worse for the stomach, but so far don’t seem to be worrying mine!
8:00 am March 2008
The stiffness is just starting to think about wearing off. My left knee is very swollen and I hobble out to my car using a stick, to head off to work. I’m wondering how I’ll make it through a whole day!
8:00 am March 2014
Stiffness? What stiffness? Did I say I was stiff and achy this morning? Heavens! I’d forgotten. That wore off in about ten minutes.
9:00 am March 2008
Work – chat to colleague – drink strong coffee – work some more. Try to remember to MOVE because otherwise I freeze into place and struggle to get out of my chair when I need to later.
9:00 am March 2014
Work – chat to colleagues – drink decaffeinated coffee (this change has nothing to do with the RA, but I have rosacea and the symptoms of that are drastically decreased by drinking only decaf coffee rather than ‘caffeinated’), work some more. Move when I want to – it’s not a particular issue any more.
12:00 pm March 2008
Strewth I’m stiff – I got a bit too involved in some interesting work and haven’t moved out of my chair for an hour. Now I’m in the embarrassing situation of needing a ‘comfort break’ rather urgently and thinking it’s going to take me five minutes to un-stiffen enough to get there!
Time for the next diclofenac. Oh no! I’ve left them at home! Mad dash home in the car to get one, and then back to work.
12:00 pm March 2014
Lunch time – get up, stretch a bit, possibly say ‘creak’, which makes my ‘Junior Penguin’ colleagues chuckle, but really I’m quite mobile. Grab a bit of lunch and go for a mile walk – I know it should be longer … and faster … but it’s about what I can manage comfortably in the time I can spare and my knees aren’t right, though much better than they were a few years ago.
Happily no lunch-time tablets any-more – as life-style changes go, this one has had a surprising amount of impact ! I’d really hate to have to go back to trying to remember lunch-time tablets again!
3:00 pm March 2008
Really wondering if I can last until five. If I was on my own I’d be out of here – but I’ve got an employee now and I feel I should set a good example so I stay.
3:00 pm March 2014
Wow – I love this job – time for a bit of a coffee break and then back to some really interesting transcription about language usage … followed, for a bit of a change, by some transcription about sheep diseases! Variety – that’s what I love!
5:00 pm March 2008
‘I’m tired and I wanna go home’ but we’re really busy and I’ve promised someone to get some work back to them this week – I’d better stay a bit longer, even though I feel soooooo tired and achy!
5:00 pm March 2014
I’m outa here – life’s too short! My way of working these days is to delegate or subcontract what I can’t fit in between 8am and 5pm Monday to Friday. I’ve got about 15 hobbies (and one hubby… and friends) and I want time to enjoy them all… especially as, let’s be honest, I don’t know how long I’ll be able to carry on with some of my hobbies, especially those involving a lot of walking or using my hands! I don’t feel negative about it though – things are going well at the moment and I’m making the most of my free time!
6:00 pm March 2008
Still at work.
6:00 pm March 2014
Just leaving a friend’s house. I’ve popped round for a post-work chat and coffee. Feeling pretty fine.
7:30 pm March 2008
Just about manage to get some supper on the table. I only arrived home half an hour ago so it’s ‘oven fish and chips’. 7.5g of methotrexate tonight, with another diclofenac, another hydroxychloroquine and a lansoprazole (stomach settling tablet).
7:30 pm March 2014
We’ve eaten already – I like to eat early and have the evening to play in – especially as I’m usually in bed by 9:00 pm these days – I find an early night makes a huge difference to my general well-being.
Tablets were 17.5g of methotrexate (yeah, it’s gone up a lot but I don’t care – it’s working, and there’s still room for it to go up a bit more … although I do worry sometimes about what happens if/when I’m up to 25g and there’s nowhere else to go because my symptoms are too mild to get anti-TNFs etc. on the NHS!), and another hydroxychloroquine and a lansoprazole.
9:00 pm March 2008
Getting ready for bed – head still buzzing with what’s happening at work, worries about health, worries that I’m not finding time to do the things I love and speak to the people I love, worries, worries, worries. Heaven knows when I’ll get to sleep. Read a book for a bit to try to take my mind of it.
9:00 pm March 2014
In bed sipping a cup of decaf coffee that hubby’s just made me. Feeling satisfied that I’ve done a bit of Spanish ‘homework’ and managed quite a chunk of embroidery and a bit of crochet this evening, while watching an interesting documentary on the telly and discussing it with hubby later in some depth. Reading a good book on my iPad and feeling very relaxed.
10:00 pm March 2008
Oh no – I really don’t feel sleepy. I’ll read some more and try to relax. ‘Come on Penguin – light’s out’ says Hubby. ‘Just another five minutes’ I say, knowing he’ll be asleep in four and I can carry on reading!
10:00 pm March 2014
11:00 pm March 2008
Better put the light out. Toss, turn, toss, turn.
11:00 pm March 2014
1:00 am March 2008
At last … zzzzzzzzzzzz…..
1:00 am March 2014
2:00 am March 2014
Wake up – stiff, in pain, pins and needles – wriggle about until I feel vaguely comfortable, lie awake for 20 minutes and eventually drift off to sleep.
2:00 am March 2014
Wake up – roll over – zzzzzzzzzzz…………….
And so another day starts in the life of Pollyanna Penguin …
Tags: ankle, bandage, combination pack, coolant, cooling, cooling liquid, evaporant, inflamation, inflamed, knee, knee pain, Physicool, seal, wrist
The nice folks at Physicool asked me to review their cooling bandage combination pack. I said I’d be very happy to do so provided they didn’t mind a completely honest review – and they kindly agreed and sent me a pack to try out. So here goes:
What is Physicool?
Physicool is a rapid evaporant which can be poured or sprayed onto their bandages. The liquid quickly evaporates into the air, drawing away the heat from the inflamed area and creating a cooling effect,
What is the combination pack?
The combination pack that Ian at Physicool sent me consists of a 3m long bandage and a 500 ml bottle of coolant. The bandage comes in its own small foil packet with coolant already applied, and that packet and the coolant bottle are packaged in another foil packet.
Opening the packs
On first use the seal along the top of both packages has to be torn off. My arthritis hands struggled slightly with the larger pack, but not much, and the smaller pack tore easily. Each pack is then sealed with a typical push-together plastic seal – not sure what those are called but you hopefully get the idea! These open easily.
Applying the bandage
The bandage has to first be squeezed to remove any excess evaporant, but it doesn’t need a very hard squeeze so that didn’t prove a challenge. I used the bandage on my knee – although I had a ‘size A’ bandage which is more appropriate for wrists, ankles etc. The knee was where I had the inflammation though, and actually the size was fine. The bandage is neatly rolled inside the bag and easy to unwind and apply. It has a velcro-style strip which can be attached to itself or to the bandage.
What I liked
- It works. It cooled the inflamed area really, REALLY fast and that meant the pain went away fast.
- The bandage is easy to apply.
- I only needed to use it for half an hour – after that I took off the bandage and my knee still felt really cool for another half an hour. But it should last for up to two hours – and it can then be re-charged and you can carry on using it.
- It’s portable. I use an ice pack normally but I can’t use that at work because we have no freezer in the building! This is something I can keep at work, and also take on holiday. Fantastic!
- The coolant supplied with the bandage should last for up to two hours of use – so I’ve got four applications in the bandage before I need to recharge.
- There should be enough coolant in the recharge bottle for around 8 more thirty-minute uses.
- The packs are quite easy to open and the bandage was easy to apply and it didn’t slip once I’d put it in place.
What I didn’t like
- It’s wet. Well, it would have to be of course, because if it wasn’t it wouldn’t evaporate! However, because it is a rapid evaporant it doesn’t feel wet for long.
- It has a smell. It’s not a bad smell, but it’s definitely a smell. No smell at all would be perfect, but if it has to smell this isn’t a particularly unpleasant one – just very slightly hospitally!
- It needs to be exposed to the air to work effectively – otherwise it can’t evaporate so well, of course. This means that whichever bit of you is using the bandage has to be uncovered. Not a problem if you want it to be cool, you may think, but what if the knee’s the problem and the only way to ‘expose it’ is to roll up your trousers? that leaves you with a cold ankle and calf.
- Because it needs to be exposed to the air, when I used it on my knee and then put my leg up, the underneath part was against my footrest, not exposed to the air. This meant I had a wet patch for a while under my leg after I took the bandage off. It did evaporate though!
Do the benefits outweigh the irritations?
DEFINITELY! Now that I know what the ‘problems’ are for me, I can work around most of them. I can make sure I have a small blanket to cover any bits I don’t want exposed, and if I put my leg up, for instance, I can put it on a foot stool and leave the actually knee unsupported to avoid a wet patch. As to the smell and the temporary wetness – considering how incredibly effective this is at cooling the painful area – I can live with those.
Want to know more?
Tags: aches, arthritis, doctor, joint pain, knee, methotrexate, MTX, NHS, nurse, pain, physical therapy, physio, physiotherapy, R.A., RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stiffness, tiredness, work
I’ve just been to see my GP about a very painful hip that’s been bothering me for about four weeks now and getting worse rather than better. (There’s little point in going until one is a few weeks into the pain as they just say ‘Come back if it’s not better in a few weeks’ if you do that!) I had been getting rather low thinking that the methotrexate increase wasn’t working – but in the back of mind I was wondering if it was arthritis at all. When I saw my rheumy nurse for the monthly blood test a couple of weeks ago I mentioned the hip pain and said, ‘Honestly, I don’t think it’s arthritis – I have plenty of movement in that hip. I could dance the can-can if I had the legs for it!’
Still, it’s funny how one’s mind can almost split into two on things like this; (well, my mind can, anyway). One part of me was thinking ‘Of course it’s not arthritis’ while the other part was thinking, ‘Doom, gloom, despair! My methotrexate increase hasn’t worked – there aren’t many options open to me if it doesn’t … will I end up in a wheelchair?’
Anyway, I saw the doc today and she confirmed that it’s NOT arthritis (or at least very unlikely to be, anyway) – far too much movement in the hip. She has referred me for physio for a dodgy ligament (technical term, that!) but the chances are, she thinks, that it’ll clear up in another few weeks by itself – so I’ll just cancel the appointment, because that’ll probably take three months to come through anyway!
The hip pain (and associated other pains including referred pain in the knee) has been making my life a misery and continues to do so. I have to limit the driving I do because it’s incredibly painful – it also affects work, but I’m very very happy it’s (almost certainly) not arthritis … though I would like to know what on earth caused the ligament to get upset because I haven’t done anything to it!
Tags: arthritis, consultant, diagnosis, doctor, flare, flare-up, hospital, knee, methotrexate, MTX, NHS, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
So I’m increasing my methotrexate. Flippers crossed that all will go well, I won’t get any nasty side effects (except maybe appetite loss, which would actually be a great benefit!) and it’ll keep my disease in control for at least another five years … but what if it doesn’t?
Well I asked my consultant this at my last appointment. He’d said, ‘I’m happy to increase your methotrexate to 17.5 and then to 20 but after that we’ll have to start considering other things if that isn’t doing the trick’.
So I asked him point blank what other things? ‘Oh’ he said airily, ‘there are lots of other things available.’ Well it’s now or never I thought and said what’s been on my mind for a while: ‘I know about biologics, but I won’t qualify for them on the NHS, will I?’ He looked a bit startled and then had to admit that no, I didn’t stand a chance. With my fabulous blood results that never show anything wrong, I’ve got no chance of being offered them at all at the moment.
So … where would I go if the methotrexate doesn’t work or causes problems? Well, I can add sulfasalazine to the mix and see if that does any good. ‘Some people are on three DMARDs’ said the consultant, but even he didn’t sound really convinced about it.
So what it boils down to is that with the usual NHS foresight, if the methotrexate increase doesn’t work and then the sulfasalazine doesn’t work, I would have to wait until I was in a really bad way, unable to work, probably unable to walk (given that feet and knee are the worst bits of me) before they’d even deign to consider me for other treatments. As usual, let’s not make the effort to keep people OK and working – let’s wait until they’re falling apart before helping, even though surely doing it that backwards way doubtless ends up costing ‘the system’ more in the end!
Well, back to crossing those flippers and hoping it never comes to that!
Tags: aches, arthritis, consultant, doctor, fibromyalgia, flare, flare-up, hands and feet, hospital, joint pain, knee, nurse practitioner, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, work
I’ve got grumbley hands and feet. I’m not sure that I’d use this description to the rheumatologist mind you, but it seems to fit. I’m not in agony; in fact,I’m not even in constant pain, but if I overdo it then the hands and feet … and knee of course, how could I forget the knee … grumble!
I’ve been getting a lot more grumbling going on over the last few weeks than I’ve had for ages. I think it all started with the flare that I had between Christmas and New Year, and there have been niggles ever since.
It doesn’t seem to matter what I’m doing – and in fact my hands have been better today, back at work and typing, than they were over the four-day weekend I’ve just had. (Fabulous birthday weekend away, but that’s a whole ‘nother story!)
At least I’m not grumbling much about work right now – we’ve had two weeks of it being dead quiet, and now it’s gone manically busy! It would be lovely it was a constant steady flow, but I’m much happier with it busy and buzzing than dead as a dodo.
Well, I don’t have a rheumatology appointment until May, and things are nowhere near bad enough to make me subject myself to one earlier, so I suppose by then the grumbles will either have done what they usually do miraculously in time for a rheumy appointment, disappeared – or they’ll be bad enough that I’ll be able to have a proper grumble to the doc about them! In the meantime I shall just grin and bear it … or possibly grumble and bear it.