Anyone with crps/rsd

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8 years 2 weeks ago #15546 by vicgirl
Replied by vicgirl on topic Anyone with crps/rsd
Hi Punk,

I haven't had great success with it myself - and no good to me now as I have pain/other CRPS signs in all four limbs. I do know a few people who've had some changes with it- off the top of my head I can think of maybe 10, 12 people I know who've tried it and given it a good run. Maybe half of them have had some changes and there is one I can think of who's had really good results :)

Laura

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8 years 2 weeks ago #15547 by Mary
Replied by Mary on topic Anyone with crps/rsd
I have read quite a bit about mirror box therapy and I believe that they have done studies that have proven that some people do benefit from it. However, I imagine that it is one part of the jigsaw puzzle, not the whole answer. I would definitely give it a go if you can!

When my husband and I were in Canberra a few years ago we visited the National Science Museum and there was one in there. I must say it was a very weird experience, so I imagine that it is definitely making your brain work in different ways.

There is also some evidence that Graded Motor Imagery can help too (along with the mirror box). Apparently some people with CRPS have trouble differentiating right from left and there is a series of exercises that you can do to improve that function. It isn't "normal" right from left, but pictures of limbs in different positions. There is an app. available called Recognise.

There is a lot of reading on this page about CRPS and I think you will find references to both here:

crps-rsd-a-better-life.blogspot.com.au/2...imagery-website.html

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables

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8 years 2 weeks ago #15548 by vicgirl
Replied by vicgirl on topic Anyone with crps/rsd
Mary, absolutely :) I should have mentioned it myself. Mirror box hasn't helped me much as I said, but I have the 'Hands' and 'Feet' Recognise Apps on my iPad and use them all the time.

The Mirror Box Therapy is actually part of the Graded Motor Imagery process, and the Recognise program you mentioned is another part - usually called laterality or just left/right discrimination. The other component is Visualisation - which is literally just visualising or imagining yourself doing particular physical movements.

A lot of this work has been pioneered by NOIGroup over in SA... www.gradedmotorimagery.com/

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8 years 2 weeks ago #15549 by Punk265
Replied by Punk265 on topic Anyone with crps/rsd
Thanks for the feedback everyone! I am pleased to hear any information about the treatment, whether positive or negative, as I am still reasonably new to the neuropathy & CRPS side of the pain world. I have had my back issue for so long now that I have accepted & adapted to that as best as possible, but I can find myself really struggling with the new pain (coming up to 12mths) in left leg/foot. I am willing to give most things a shot & if this can be offered effectively I'll be open to it's outcomes! I am still undecided on whether I actually like my new physiotherapist, so it can be hard to accept treatment from people you haven't 'warmed' to sometimes.

Laura, I noticed you said in another forum that you have the neurostimulator from st jude & seeing you call yourself vicgirl - it's a long shot, but do you have holly schoefield as your tech? I'm in tassie & she does my programming, I know she is regional for Vic/tas that's all?! How do you find the stimulator? I seem to be having trouble with my programmes lately in that they keep failing, so I've seen a bit of holly over this year already. I do find that when it is working effectively it is a good tool though.

Thanks again everyone & I'll certainly look into the info you've posted links to! :silly:

Peripheral neuropathy/CRPS/Chronic pain

Keep ticking off the attainable by focussing on the 'Can' rather than the 'Can not' in your day.

It is what it is, tomorrow's a brand new day.

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8 years 2 weeks ago #15551 by Mary
Replied by Mary on topic Anyone with crps/rsd
Hi vicgirl,

I am in SA and that's how I originally heard aout the NOI. They do amazing work and I think that they are on the right track. I read Explain Pain many years ago and a few years ago I revisited it with a physiotherapist when I was in a pretty bad flare up. Those principles can be SO much help with pacing etc. I also think that it removes a lot of the fear we all have and that is really the first step I think. As far as Recognise and Mirror Box go, my take on them is that they certainly can't do any harm and they are certainly exercising our brains!!

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables

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8 years 2 weeks ago #15552 by grappers
Replied by grappers on topic Anyone with crps/rsd
Punk265 I also have a neurostimulator from st jude but reside in SA, I have been back for reprogramming a few times now, currently I have 4 programmes to target different areas at different strengths, recently I returned to hydro under the guidance of a physio, he admitted he had no knowledge on stims and gave me exercises which caused more problems, so back to see about programming with Nicola their rep, no matter how much fiddling she could not cover this new pain.
After lots of scans which the surgeon ordered, it was found I had torn the muscles on both sides of my lower back and left butt cheek, luckily these will heal in time, up to 3 months. I have no regrets having the implant as pain levels are not as severe as before and some days nothing will touch the pain not even taking extra medication. I have had mine in now for 6 months and still forget sometimes to turn it down before going to bed and that depends on which program I am running at the time, one of them there is no way you can forget any wrong movement is certain to zap you, this one has a high output to cover my lower back when it is playing up really bad.

Don

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