I hate it when my predictions come true!

February 24, 2011 at 7:20 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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I posted on 25 January to say that I’d finally given in and made a doctor’s appointment to get a physio referral for the presumably RA-related pains and niggles in my ‘shoulder’ (really acromoclavicular joint, but that’s such a mouthful!) and that by the time the appointment came through I’d be feeling better. Well guess what … it has and I am … mostly.

I am still getting various shoulder niggles but nothing like I was back then. Mind you the appointment isn’t until the middle of next week, so who knows, perhaps I’ll feel awful again by then! (Not that I want to. I really, really don’t want to!)

It’s quite surprising how OK I am, given that I had what I thought was a rather nasty fall on Saturday. I’d come back from a lovely afternoon out with a friend to find that hubby had been busy in my absence and washed all the carpets! (This is a pretty big job, although not as big as it could be given that our downstairs rooms are all carpet free and so is the upstairs office.) I was suitably impressed but my head was obviously full of my afternoon out and didn’t have room in it for common sense, so I went upstairs, walked all over the damp carpets, put on my very non-non-slip slippers, got the soles nicely damp and then, carrying an armload of files, went into the office, with its new laminate floor.) SPLAT! THUMP! OUCH!

Five minutes later hubby wandered up (having failed to hear the thump or the loud penguin squawking), saw me still lying on the floor (wondering whether it would be wise to move and whether we had any handy brandy), made one of those meaningless comments that one does make in such situations, like ‘Are you OK?’ when I patently wasn’t, took a step toward me and very nearly landed right on top of me!

Fortunately he managed to right himself, because that would have been such an embarrassing story to explain to the ambulance crew …

I eventually picked myself up, concluded there was nothing broken or even sprained but that I’d have a bruise the size of a planet in the morning, took a couple of paracetamol and whinged for the rest of the evening … obviously the new laminate floor in the office is springier than I’d thought because I didn’t even have a bruise the size of peanut to show for it! In fact, apart from being slightly stiff, I was fine. (And in case anyone else has the same sense of humour as my brother (which is quite unlikely) the floor is also fine!)

Actually my ‘shoulder’ has been slightly better since the fall … but I don’t think I’ll be patenting it as a new cure!

Doctor, doctor …

February 14, 2011 at 10:00 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 1 Comment
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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!

End of the line for physio?

June 26, 2010 at 4:04 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, Me, rheumatoid arthritis (RA) | 2 Comments
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OK, here’s the thing – the geniuses at my local NHS physo department (or should that be genii?) have decreed that in order to ‘be in line with the private sector’ they will only give any patient a maximum of six appointments before they kick them out. (The last three words are, of course, my terminology and not theirs!)

I asked Lovely Physio how this was ‘in line with the private sector’, as I had had to have quite a bit of private treatment before I got into the NHS programme and oddly enough they hadn’t been anxious to see the back of me after six appointments. No surprise there – I was paying them. Why would they want to be shot of me? She said something like, ‘I have no idea, but that’s how they’re presenting it to us!’

I suspect the idea is that by ignoring the fact that there are people with chronic conditions who can benefit enormously from regular therapy and pretending that everyone they see can be ‘cured’ in six appointments, they can massage their figures by getting the waiting list down from the current five weeks to a more ‘in line with the private sector’ one to three weeks.

The complexity of the system emerges from the fact that it’s general practitioner budget that pay for this treatment, but once you were being treated, until now, it was up to each physio to decide when and if to discharge. The GPs had little or no say, but they had to pay. So the idea is that you now have your maximum of six appointments and then go back to the GP if you feel you need to still see a physio, to get re-referred, as I mentioned in the previous post. The GP can, of course, say no. I suspect if I see the one that knows me she would say yes … we’ll have to wait and see, but even if she does we’re looking at a five-week waiting list right now.

One silver lining in the cloud – they have an SOS system whereby if I need to see my physio in the next couple of months I can phone and make an appointment saying I’m on the ‘SOS list’. I can then go in under that and have maybe six appointments then before getting kicked out! Hopefully I won’t need to see her in the next two months, but last time I thought that I only lasted three weeks …

Unfortunately I feel I have very little fight in me at the moment – I don’t know if that might be something to do with the thyroid issues i might or might not have, but that’s the way it is!

The good, the bad and the mildly irritating

June 25, 2010 at 3:53 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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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 …)

Puzzling pains

March 11, 2010 at 9:19 pm | Posted in Me, rheumatoid arthritis (RA) | 3 Comments
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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?

Phew – coming out of a flare!

February 19, 2010 at 2:28 pm | Posted in rheumatoid arthritis (RA) | 3 Comments
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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!

The hidden costs of even mild R.A.

January 15, 2010 at 11:11 am | Posted in rheumatoid arthritis (RA) | 6 Comments
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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!

Wax bath therapy

November 20, 2009 at 7:52 pm | Posted in Me, rheumatoid arthritis (RA) | 10 Comments
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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.

Physiotherapy – what’s it all about?

November 9, 2009 at 3:03 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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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?

Bowled over by great physio service!

September 15, 2009 at 10:39 am | Posted in rheumatoid arthritis (RA) | 2 Comments
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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!)

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