Neck brace – AHA! There are lots of front fastening ones out there

January 28, 2009 at 9:30 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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I had another physio session today – a very good one. Although I actually felt slightly worse coming out of the hospital, I feel significantly better now and I’m attributing it, rightly or wrongly, to the physio. Anyway, I mentioned to my physio that back fastening neck braces (aka cervical collars, neck collars etc.) were a pretty stupid idea IMO. She looked rather astonished and then said, ‘Of course! You’re quite right. Well they probably make them … but of course the department will just buy in the cheapest option.’ Yup, that sums up the NHS, but then again, I’m very, VERY glad we’ve got an NHS, for all I moan! There are lots of places on line to buy front-fastening collars. The cheapest one I’ve found is here but there are lots of other options. I shall be buying one just as soon as some of my clients pay me!

Zippetydoodah, I’m finally getting NHS physio

January 28, 2009 at 2:26 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | Leave a comment

Yay, I’m finally getting some physiotherapy on the NHS for my RA. It hasn’t actually taken QUITE this long – I started just before Christmas and this afternoon will be my fifth session … and my physio has achieved a ton in that time … in spite of this week’s flare up! Further good news is that so far she’s shown no sign of the two things I was dreading: Saying ‘I can’t treat that bit of you – only your shoulder and knee were referred’ or saying, ‘Right you’ve had four sessions, that’s your lot.’ Mind you, I’ve also heard rumours about six sessions being the lot, so we’ll see what happens next week!

After taking a thorough history and getting me to go through a range of ‘range of motion’ exercises to assess the issue,and after establishing that I’d actually been referred for the wrong shoulder she was more than happy to agree that if ultrasound had helped in the past it would probably help now, and do some. That’s one:nil to the Dereham physio over the Norwich one! She started off doing ultrasound and some massage and giving me new exercises to do – and also telling me to stop when it hurt. Seem obvious? Not to me it didn’t, having come through the old ‘No pain no gain’ eighties regime!

Then a couple of weeks ago I went in and said, ‘I know I’ve not been referred for this, but my neck is causing major problems’ so she did a thorough investigation of that and then two treatments specifically around the neck area – massage and manipulation. Apparently I have a lot of stiffness in some of the joints in the neck/upper back, which she’s been working on, and apart from the flare up, I’ve seen a big improvement. I’ve also got some strengthening exercises and, as previously mentioned, a neck brace for when things get really bad …although that has issues of its own. (See my post about that.) She’s happy to listen to me when I go in, with regard to what the problems are this week and what needs most work, and she’s also quite friendly and happy to chat about ipods, children, embroidery, home decorating or any number of other fairly random topics while ultra-sounding. (While massaging she’s too busy going, ‘Oh did that hurt? Is it bearable’ etc. to chat.)

It’s slightly difficult to chat as, and this is my only very minor whinge, being an old NHS hospital (which i suspect is being slowly run down until they close it), the physio ward is just that, a ward with curtained couches, not separate rooms. So you can hear the lady next-door telling her tale of woe about how she can’t look after her elderly sister, while a man across the aisle talks about his knee problems, and a girl using traction wonders how many inches she’ll grow by the end of the session … I try not to listen, but boy it’s hard!

Still, all in all I’m very happy … so far. Let’s wait and see if I’m still saying that in a couple of weeks’ time, or whether she’s kicked me out for having too many sessions!

Flare up – and I know I brought it on myself!

January 27, 2009 at 2:27 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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The OT gave me a very sound lecture on pacing myself and how important it is! Over the past two weeks I have dismally failed to pace myself, and over the past couple of days I paid the price! I had been feeling much better, and we’re fantastically busy at work, so I’ve just been getting on with it. Getting on with it means working from 8.30 to 6.30 most nights, and not taking a proper lunch break, although I really DO try to get up every hour and have a stretch.

And, because I was feeling so much better, I didn’t crash at the weekends either. It was great – I was busy, I was enjoying myself at the weekends, why slow down?

This Saturday, I had the answer to that question! I was full of aches and pains when I woke up, attributed it to morning stiffness and thought no more about it. But Sunday I was really quite unwell and hardly got out of bed. I was sleeping badly because I woke up in pain, and I felt like everything was back to square one.

The good news is that after a much reduced working day yesterday and a rest all day Sunday, I feel much better today. The bad news is that apparently if one keeps doing this it’s not just a vicious circle … as in feel great, be madly active, crash, get better, feel great, be madly active, crash etc. … it’s actually a vicious spiral in a downward direction. So each time you crash things are just that little bit worse, and you don’t get quite so much better.

Well, I’m glad I KNOW this, and I know what to do about it. Now all I have to do is actually DO it … which, alas, is much easier said than done!

NASTY NICE spreads its evil message

January 21, 2009 at 12:24 pm | Posted in Uncategorized | Leave a comment
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I’m currently working on a transcription about pharmaceutical companies, and it’s hardly giving away state secrets to mention that the guy has just said that many other countries are looking to NICE, (who base their decisions on whether a drug is approved in the UK on ‘health economics’ which boils down to ‘if it’s expensive then the answer is no). This is a real concern because if more and more countries move to this model then more and more pharmaceutical and biotech companies are going to have to reconsider whether it’s worth their while developing expensive biologics such as anti-TNFs. If they decide it’s NOT worth while, where does that leave us, the patients?

This is a particular concern for RA because frequently a drug that works well for a while in one patient suddenly stops working and they need to move on to something else. I’ve posted about that before I think, regarding the NICE decision (now withdrawn for reevaluation) to refuse a further anti-TNF treatment to someone that’s already had one). So if the companies stop developing these drugs, then we’ll be in the same situation down the line as we are now – a small number of drugs to try, if NASTY even let us try them, and then bang – here comes the wheelchair.

Sorry for the lack of positivity in this post – I’m quite stressed right now! But then again, I’m stressed because I have a lot of work and I’m GLAD I have a lot of work to keep the wolf from the door in the current economic climate!

Neck Brace

January 20, 2009 at 4:43 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | Leave a comment
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I’ve got a neck brace from my physio, to be used only in cases of absolute necessity, because I don’t want my neck muscles getting even weaker than they already are! I’m using it for the first time today, and I would love to ask the person who designed it why thought it was a good idea to have it FASTENING AT THE BACK!!! I can’t believe I’m alone in that when my neck hurts, my shoulders hurt too, and lifting my arms right up and around to the back of my neck and fiddling with a fiddly bit of velcro is really nor easy! And as the OT said, ‘We must maintain our independence …’ (See the post on my lovely OT here) And anyway, ‘What do you use to fasten your awkward neck brace?’ with the answer, ‘My husband’ doesn’t work if I’m at work when I need to use it.

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