Hey catra - thank you so much for sharing your experience of your rollator, it has really helped put things into perspective for me. Mine is totally rubbish as it has tiny hard wheels and the brakes aren't secure (and so it moves when I sit down), but I am going through the process of deciding whether to buy a better one or wait. I think I'll have to, but the better ones are expensive here and each has its own failing. I want big/soft wheels, decent brakes, good folding capability AND kerb climbing ability. I wrote a review on my blog of my naff one and went through the pros and cons if anyone fancies a read at any point.

Mollymoo - you're amazing, thanks for all the tips on ideas for getting control back. I am so sorry you're having similar problems to me with sleep, I did wonder why on nights when I get my pain to a sleepable level it just doesn't come to me, but your explanation makes a lot of sense. Yes my memory has been effected too - I forgot my address when I was asked for it in the chemist! As for the sleeping tablets, I felt like that today after resorting to my topup medication, and the other week after using diazepam for the spasms. We can't win!

Kev - thanks for that link, it looks like it might turn out to be a good resource from the little I've seen of it so far. I did a search for the SCS on there and got studies suggesting just about every view someone could have on them, including that they mostly work long term, so I think it's the nature of the science beast. The thing I learned on my degree is you can get a study, even a well-backed one, backing just about any viewpoint. I tend to use the medical/psychological databases for searches normally, as although I'm not saying this about the link you've given (I don't know it and so far it appears to have a variety), I have found other sites on other subjects to only list the papers that back their view. I am definitely not downplaying the potential risks and you're right to be cautious, and so I am going to discuss with the pain clinic about their success rates with their patients long term. Thanks again.

I got my rollator from amazon.com and I think the price fluctuated on it from $100-$150 and I paid somewhere in the middle of that. But it was free shipping through amazon which was nice.

With over 120 sites and 100 documents downloaded plus short term memory loss it sometimes takes a while to find things

http://www.rsdinfo.org/CRPS-SCS%20Article.pdf

I wouldn't even bother talking to our lot about RSD, I have been treated by r spoken face to face with 7 specialists including probaly the top 3. None of them had heard of US and Dutch papers I spoke about and they are all at least 20 years behind the rest of the world. The first paper saying gaunethedine blocks were useless for us was published in the US in 1993 and 7 subsequent studies prior to 2000 confirmed this. One so called specialist gave them to me in 2010 and the first UK paper saying useless wasn't published until May last year but there are still Uk sites sayig they should be used http://www.painclinic.org/treatment-...eticblocks.htm

Hi,

Some really useful info and thinking here - so nice to know you're not alone

I have had CRPS for nearly two years, and I struggle with getting to sleep as both my feet burn like crazy at night, I have headaches, and my CRPS is throughout my left side so I can't get comfy... Here's a couple of things I try for nights, I get more sleep than I used to.

Traditional meditation I find a bit too serious and I don't get on with it, but I have my own method which works really well... This is tragic I admit, but hey, whatever works lol. I recite (in my head ) an episode of Bagpuss, that I used to watch as a child, and then got for my own children. I know it sounds ridiculous, but it's that slightly hypnotic recitation of something you knew off by heart as a child, that you can visualize, and that your brain associated with relaxation and pleasant thoughts. Seems to work, and as a bonus it distracts me from the pain and makes me smile a bit.

I also open a window and pull the quilt off the sheet an hour before bed, which makes everything nice and cool, and I pull the quilt back off my feet and put a cold faintly damp flannel over my toes. That cools the worst of the burn and with Bagpuss on my side, I get to sleep most nights...

Good luck folks.

Bram.

(There was once a little girl, and her name was Emily. Now Emily had a shop. It was rather an unusual shop, because it didn't sell anything. Everything in that shop was a thing that someone had once lost, and Emily had found, and taken home to Bagpuss. Emily's cat Bagpuss. The most magnificent, the most incredible... saggy old cloth cat in the whole wide world. Now one day, Emily found a thing. She took it home, put it in front of Bagpuss and said some magic words... 'Bagpuss, oh Bagpuss, old fat furry catpuss, wake up and look at this thing that I bring...wake up, be bright, be golden and light...Bagpuss oh hear what I sing.' And Bagpuss woke up. And when Bagpuss wakes up, all his friends wake up too. The mice on the mouse-organ woke up and stretched, Madeleine the rag doll and Gabriel the toad. And Professor Yaffel, an old wooden bookend in the shape of a woodpecker, came down to see what Emily had brought... )

Oh Bram - you don't half know how to make me feel old, I remember Bagpuss lol! I even have a Bagpuss hot water bottle that talks, yes talks! He says "Oh isn't it awfully nice to have a cuddle".

Meditation wise I was taught a method many years ago in counselling while I was at college that involves visualisation (a nice walk up a gentle hill to a meadow with a rucksack of worries that I let go as balloons). Sounds totally hippy and it is really, but it coincides with a physical relaxation routine that used to help back then. I've got to admit I've not used it for pain yet as my concentration when sore is non-existent.

Your bedtime routine sounds pretty similar to mine, I have to "air" the bed with the window open (which I leave open all night even on coldest nights). While I love the cool sheets on my feet, I can't tolerate cooler so I haven't used the flannel idea. I don't think I have CRPS in my feet at the moment, unless the tendonitis is that.

With bedding I can't win - I love the feel of soft flanelette/brushed cotton sheets but they are too warm and also make my thighs feel even number because they're so soft, which makes me feel sick. Anything rougher doesn't have that effect but obviously irritates the burning sensation in them a bit. The worst sensation is that of "bits" in the bed - crumbs, anything along those lines. I manage ok with normal bedding but I just don't sleep, even when my pain isn't really bad. Last night it was 6am before I nodded off, with the alarm going off at 7am. It's not like I'm not tired either, throughout the day I can barely stay awake and even find myself dreaming! I've tried the old advice of not napping through the day and making sure I have a set routine, no caffeine etc, but I still don't sleep. xxx

Lol, I have a Bagpuss who says "dearest mice, I love you all" when you squeeze his tummy awww!

I like the walk idea, might try that one...

The flannel isn't mega cold, I can't tolerate that extreme on my toes, I just use cool water and then wring it out as much as I can, until it's almost dry, then use that. I only use it for a few mins to calm the worst of the burn, then leave my toes in the air for a while...

This is a horrible condition to live with, especially when no one in the house understands it. Sigh.

Bram.

Here's a couple of things that might help

http://www.openfocustraining.co.uk/exercise.html

http://www.paintoolkit.org/assets/do...t-Nov-2012.pdf

Thanks ever so much both of you!

I had a really, really bad night last night. Most of my worst pain before now has been the lower back ache and the spasms that put me in hospital. My "nervy" symptoms (burning, pricking, numbness, etc) have been irritating to sore without being agony, and have always been worst in my outer thighs. I have been pacing myself exercise wise but last night I was under a fair amount of stress/upset that couldn't be avoided. The burning was so bad, well I don't need to tell you what I was thinking as I know most of you will know that already. I took buprenorphine sublingually to try and get the edge off, but it persisted until I couldn't stay awake any longer, which was 8am this morning. I think I only fell asleep as I have only had 2 hours unbroken night-time sleep since Thursday.

I am going to try and get the GP to prescribe the cream, but in the meantime is there another tip anyone can share on alleviating burning sensation? It's not a heat-related issue - they get warm but obviously it's a nerve sensation. It's constant but gets worse and better day to day. I've never had it as bad as last night.

Thanks!