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: 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: birthday, consultant, flare, occupational therapy, OT, physio, physiotherapy, RA, RA flare, Rheumatoid arthritis
At last I’m on my way out of a rather prolonged flare! While I’m sure that my consultant would be pleased to point out that it wasn’t much of a flare – I mean I didn’t even need a steroid shot – it was quite enough of one for me, thank you!
I had a very good birthday this year, in spite of being in the middle of the flare. Hubby had the day off too, which he doesn’t often manage, or at least not to coincide with mine, and we had a leisurely morning in Norwich including a trip to the Castle Museum and lunch at ‘The Waffle House’. Because of the whole flare thing we decided to come straight after an early lunch and I spent the afternoon lounging around in bed reading some of the many great books (mostly embroidery-related) that I’d got for presents, before heading off to Mum’s for a yummy meal in the evening. While I’d have liked to have been able to DO more on my birthday, it was still a jolly good day!
I suppose at least I’m finally learning to pace myself. Talking of which, the OT is NOT in my good books at the moment. I drove for forty minutes in stinking traffic through rain and hail and sleet and snow and fog (and semi-darkness for part of it) to get to my OT appointment only to be told, ‘She’s gone home’. Luckily for both of us I suppose a) I like her and b) I know she wouldn’t do that deliberately and c) she phoned and apologised profusely this morning.
I told her she could make it up to me by fitting me in between physio and a hair appointment next week, which she is doing. I shall come away feeling thoroughly pampered after all that: not quite a luxury spa treatment, and believe me, our local hospital doesn’t bear much resemblance to a luxury spa, but the closest I’m likely to get to one for a while!
Tags: arthritis, consultant, costs, doctor, finances, hidden costs of R.A., NHS, nurse, occupational therapist, physio, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA)
I’m part of the Norfolk Arthritis Register (NOAR) study, which is an epidemiological study around rheumatoid arthritis. They look into all sorts of things, physical, mental and social, that affect R.A. patients, from an epidemiological standpoint – i.e. they look at lots of us and then see what the statistics say. In spite of the old ‘lies, damn lies and statistics’ quote, they produce some very interesting results.
One of the bits of research they did, before I was involved, was around the hidden costs of R.A. and it’s something I’ve been thinking about a lot lately. Even mild R.A. leads to an extraordinary amount of hidden costs, even in this country with our ‘free healthcare’. I’m trying to compile a list of those hidden costs for someone like me with mild R.A. – I’d be interested in any additions people might think of, so please comment if any come to mind! Later on, when I have the list as complete as I can make it, I’m going to try and price it. I think that might be quite frightening.
Here’s what I’ve got so far:
- Over the counter medications such as paracetamol, stomach settlers etc. not prescribed by the doc
- Time off work due to sickness
- Time of work to attend hospital appointments (consultant, nurse, physio, OT etc.)
- Travel costs to attend hospital, since I live in a rural area and hospitals are 30 miles for consultant/nurse and ten miles or so for OT/physio.
- Aids such as jar openers, tin openers etc. (Some of these are free through OT services, some aren’t.) I have compression gloves from OT for instance, but they’re starting to get a bit baggy/stretchy after less than a week, so I might invest in some good quality ones!
- An occasional one only, but cost of trips etc. cancelled due to a flare!
I’m sure there are more – will add them as I think of them or as people comment with suggestions! Some, like cost of transport because one can’t drive, I haven’t included because they haven’t actually happened to me so far!
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?
Tags: Dereham, fibromyalgia, migraines, neck and shoulder pain, physio, Rheumatoid arthritis
Not literally of course as being literally bowled over by physio would probably defeat the object really!
I haven’t got round to whinging about it on here yet, but from the moment I woke up on the first day of my holiday I’ve been going through a flare (definitely a flare rather than a fizzle this time!) in my neck and shoulders. Last Tuesday morning I could barely move until the stiffness wore off and I had to use my TENS machine pretty much all day (which may explain why Kate-Kate the Sat Nav started speaking in tongues (mainly Polish) and hasn’t worked properly since, but that’s another story). It seemed to get a bit better through the holiday (oh, the power of relaxation), but on Sunday morning I woke up with a corker of a migraine, which I’m sure is caused by the neck and shoulder pain, as the two do tend to go together with me. I spent pretty much all Sunday in bed (or on sofa, having come down because I felt slightly better and then found I felt too ill to go back up to bed again), and thought I’d kicked it on Monday, only to have it come bounding back at lunch time. (Migraines do tend to linger, even when you’ve got rid of the main agonising headache part.)
So … this morning, in a fit of wild optimism (especially wild as I do actually have a booked appointment tomorrow), I phoned the physio department and asked if by any chance my physio had a cancellation or something and could see me today. ‘Can you get here for 11.30?’ said the receptionist, without even the usual grilling as to why I needed to see someone. You could have knocked me down with a feather!
Well for all my moans about the NHS, there’s little pockets that get it really, really right, and my physio department (and indeed my physio) is definitely one of them! In fact she recommended a year’s supply of cake the other day … what a wonderful woman she is. (But that’s another story too!)
Tags: aches, fatigue, fibromyalgia, flare, hospital, pain, physio, RA
I can now claim to know the car park at the hospital where I have physio quite intimately. I know how many spaces there are, I know what sort of trees surround it, I know the view across the fence over the corn field, I know there are blue tits and great tits and some sort of finch foraging in the trees, I know that the oak tree has a few early common spangle galls on it.
No, I wasn’t doing some sort of strange nature survey of the hospital car park – I was waiting for the RAC! Yes, the car has broken down AGAIN! Having lost my marbles and my rag, I have now also lost my car! (Well, hopefully not permanently, but it’s in the garage.)
My wonderful hubby drove out to see if he could help and,although he couldn’t, he waited another hour with me until the RAC arrived. It was a 2.5 hour wait in total – not fun.
Fortunately the RAC guy (who was nowhere near as lovely as the adverts would like you to believe, but OK) got the car going – but I had to take it into the garage because it was still showing faults.
I was patting myself on the back last night thinking how well I was coping with all this … but when I got home it all finally hit me. I felt absolutely exhausted, headachy, aching all over, sore hands, sore feet … hmm, so looks like a fibromyalgia AND RA flare, I thought. Lovely …
But no – I made myself get an early night, convinced myself that the car would probably be OK,managed not to worry too much and … well, I’d like to say I feel a million dollars today but that would be rather overstating things, but AS YET I am flare free. Yippee!
I can’t promise that’ll still be the case if there’s real car disasters on the horizon, but I’m OK for now!
Could be that having just had physio helped too!
Tags: arthritis, doctors, flare-up, joint pain, neck pain, physio, physiotherapy, positive mental attitude, RA, Rheumatoid arthritis, stress
So, are my flare-ups related to stress, or not? I thought they were but I hope they aren’t, because if they are I’m in for a big one any time now!
Yesterday I had my first ever row (maybe too strong a word, but very strong disagreement) with a client, on the phone. I was, to say the least, short with them. I was convinced I was standing firmly on the moral high ground as they’d made a bit of a mess of things, and I told them so… only to realise mid-conversation that I’d also made a mistake. While theirs was more serious, it caused an earthquake in my moral high-ground leading to rather a landslide.
It took the rest of the day to try to repair some of that, and to TRY to stop constantly worrying about it, while also trying to get on with some work.
It was all put into perspective somewhat when I got home to find that one of my friends had lost his job, another’s cat had died and a third’s husband had had a stroke!
All in all not one of my best days. I ended it by telling myself firmly that tomorrow WOULD be a better day, and it has been. (Not that that would have been hard!)
As for the RA, I had practically no problems yesterday and although I was pretty stiff on getting up this morning, it didn’t last too long. My neck and shoulders are stiffening up again now, and slightly achy, but that may just be because it’s been over two weeks since I had physio, as my physio isn’t well and had to cancel the last appointment. Employing positive mental attitude to assume that’s what it is, and not the start of a stress-related flare!
Tags: arthritis, pain, physio, physiotherapy, RA, rhematoid arthritis
Well I’m feeling a right idiot at the moment! I have had a physio appointment on a Wednesday afternoon (or very occasionally a Wednesday morning) since just after Christmas. Last week my physio said, ‘I’m not in on Wednesday next week, but I’ve got one on Tuesday morning if that’s OK?’ It was fine, so we booked it on.
I’m sure you can see what’s coming … I didn’t put it on the calendar, and quite late on Tuesday afternoon I thought to myself, ‘Hmm, wonder what time that physio appontment is tomorrow?’
OOOPS! By the time I phoned to apologise they’d all gone home for the day, but I hope she got the message. Perhaps she’ll have forgotten by the time I see her again, as she’s not in next week anyway!! So I’ll have gone THREE WEEKS without physio by the time I see her again.
Still – things seem relatively good at the moment, so I’ll just have to keep using the TENS machine and hope things stay stable until I see her again …