I wish all Rheumys had to wear one of these as part o... - NRAS

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I wish all Rheumys had to wear one of these as part of their training!

8 Replies

Interesting video here, a Rheumy in America is seen wearing a special suit that tightens his joints and restricts his movements to emulate that of a patient with RA. Whilst he obviously doesn't experience the pain , it does give him a better understanding of how difficult everyday life is and he says will change the way he treats his patients in future. (Would be handy for disbelieving work colleagues too!)

Sorry but I don't think the video will work properly on mobiles or tablets. Try to watch it on a pc if you can though, it is very interesting.

everydayhealth.com/rheumato...

All the best

JoJo xx

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Yes - especially the not so good ones! I haven't felt like that since before I was diagnosed but it brought it all back and I don't think I need to try one on - thanks! Tilda x

miss profile image
miss

OMG think yes to the unsympathy ones and the disbelieves. Wish i could manage to do that with the computer. Is it cut and paste ? x

in reply to miss

Yes I just cut and paste the info from the address bar at the top :-) x

miss profile image
miss

Ta for that i will at some point give it a go x

There was a program on tv some time last summer (like embarrassing bodies) where two doctors put themselves through simulations to demonstrate to outsiders what certain conditions could feel like. There was one suit they used for oa (but they linked it to ra and inflammatory arthritis in general. It was a compression suit but had sharp spikes at joint sites so they could simulste the pain of moving our jiints. It also gave mini electric shocks to simulate the erratic nerve responses that sometimes cause us to fall. This doctor then tried to prepare and drink a cup of tea, get into a bath and take a jacket off.

He said it changed his view dramatically and said he would like all doctors goingg into this specialty to wear the suit for an hour just so they get a glimpse of what some of us go through. It was brilliant. My partner was in tears watching it as I was newly diagnosed when we watched it.

If anyone can find that it would b worth a link.

Oh I haven't seen that one. Yes that would be good to see. I really wish my Rheumy had at least half an idea of what I'm going through. Perhaps he'd see me for longer than 10 minutes every 3 months and actually prescribe some treatment instead of telling me ' we'll talk see how you are in 3 months time'. In fact I don't even get to see him usually I'm fobbed off with a locum!

I think Rheumys should have to take a minimum of one clinic a month whilst wearing the suit to remind them of what they're dealing with. We are not simply names on a list to be got through in a set amount of time. We are people with very real pain, fears and worries and we need help!

elsa123 profile image
elsa123

My son is an event organiser, mainly in Brussels.

He is organising an event in May, and Ainsley Harriot, who has ra will be there, plus people with other diseases.

That suit you mentioned will be used, plus some other things that simulate diseases.

He has invited me along....son, not Ainsley lol.

Part of me would love to go, but the other part of me doesn't.

I can think of a couple of people I would like to see wearing it for a while...my ex boss for one :(

in reply to elsa123

Oh I didn't know Ainsley Harriot had RA. That's interesting, I can barely make a cup of tea for myself let alone cook anything from scratch. I wonder that meds he's on?

Which part of you do you think will win the decision to go or not to go? Is it the travel that puts you off? It puts me off going anywhere I can tell you. I wish they'd hurry up and develop a Star Trek style transporter beam. I might be more inclined to go to other places then :-)

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