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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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11-04-2013, 11:33 AM | #11 | |||
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11-04-2013, 01:35 PM | #12 | ||
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I use a bed frame too (or a pillow at the end of the bed), but I can't stand draughts, and our quilt seemed a touch too small to go over the frame too.....so I use a blanket that tucks in under the mattress and around the frame, and then put the quilt in as near a 'normal' position as possible. It seems to work pretty well, and my feet don't feel colder than they have to!
Anyone in the UK know a good brand too? Sadly you can't return sheets for being 'a bit rough' so my kids have plenty to choose from!! Good luck guys. This is a rough condition to deal with, and the little things really help if you can get them right... Bram
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CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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11-04-2013, 01:50 PM | #13 | |||
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Here Here on "the little things that help..." |
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11-04-2013, 02:01 PM | #14 | |||
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LMAO .... ah. Oh it's good to laugh. thanks!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004 Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else. Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb, |
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"Thanks for this!" says: | zookester (11-04-2013) |
11-04-2013, 02:05 PM | #15 | |||
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The only ones I have right now that I do absolutely love, that had I used my head I would have sought out again, is a brand called Park Avenue Collection and I bought mine at Kohl's. Not cheap though, like $60 bucks for King size.
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004 Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else. Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb, |
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"Thanks for this!" says: | chaos (11-04-2013) |
11-04-2013, 02:12 PM | #16 | |||
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I hear ya, this is normally my approach too. For instance, like with Kohl's it would be no problem to return them. I was definitely having a blonde moment when I bought these damn things I have now. I got them from Tuesday Morning (a discount store or so they say) and I don't think they'll take them back, and IF I can find the damn receipt (was just looking for that this morning) I will at least try. And if nothing else it would be great to get in-store credit or something. Bram, you crack me up. "Lots to chose from" I guess I could do that but I am the only king size sheets in the house. So they're a little big... more to wrap up in... right? lol
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004 Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else. Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb, |
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"Thanks for this!" says: | Brambledog (11-04-2013), zookester (11-04-2013) |
11-04-2013, 02:54 PM | #17 | |||
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To those who first responded that I was unable to write back right away.
Bram, Yes… even the universe! lol This damn sinus infection is moving down into my chest.. joy! I’ve had to pause on the edit today. The weather is changing for the worse, body aching in every way and well, a pause was being demanded. I’m feeling SLIGHTLY better about the edit. I have 1.5 hours of completed edit, YAY!! That’s a lot in video land. I still have AT LEAST a few more weeks of editing ahead of me and then it will be all done. What a lifted weight that will be. Renee, yeah my laptop on my bedside table (like a hospital bedside table), with this thing the laptop sets on to raise it up and tilts it at me is the only way I am able to be in bed and read/respond, or just spend time on a PC that isn’t work related. I feel pretty lucky to have it. I get tired of TV pretty easily, so the laptop is great in that regard. Neurontin/Gabapentin: I’m at max dose on that at 3600 mg p/day, so I can’t take any more of that. I see my pain doc soon and we are definitely going to have to discuss this drug and how it’s not working as well as it used to, and Baclofen was awful for me, so we’ll see what he says. But thanks for the suggestion hon. Satin sheets.. hum. I have some but it’s been years since I’ve used them. That might work in the summer, but Colorado is just too cold in the winter for those. It’s a good thought because they’re soft. Might just slip my broken butt right out da bed… lol. Az-Di, “I wish I could bring you a full body size down pillow cushion filled with warm air” Warm air pillows, I think you’re on to something!! Yep, been amping up on Emergen-C I should look and see if it has the Selenium and Zinc in it too. If not I know I have some Zinc, but I’m not sure what Selenium is. I will have to check the vit store. I’ve added guaifenesin to my arsenal, but if this crap just keeps getting worse, I may have to head back to the doc. When I cough I have that lovely taste of … OMG it’s going to be bronchitis next! Ug!!! Hey Nanc, No worries and I sure hope you’re feeling better soon too! Thanks for dropping me a line.
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004 Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else. Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb, |
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"Thanks for this!" says: | Brambledog (11-04-2013), RSD ME (11-04-2013) |
11-04-2013, 03:05 PM | #18 | ||
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Thanks Vrae for the kind thoughts. I haven't used satin sheets in years either to be honest with you! And I didn't think of the slipperiness. Maybe you should nix that idea! My husband swears by the highest thread count all cotton sheets. They are comfy, but when my skin starts burning I take all the sheets off until the meds take effect and the burning subsides.
My dr wants me to take more neurontin, and I may consider it. I take 1800 to 1900 mg a day, but the side effects are hard on me, though combined with percs it does help ease the pain and burning. I'm sorry you are taking so much more. But hope you can find some other med that may help more. Maybe you've just built up a tolerance for the neurontin. I think I have and may need more because of that. I'll just have to deal with the side effects. I hope you get some relief soon and thanks again for your kind words. |
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"Thanks for this!" says: | Vrae (11-04-2013) |
11-04-2013, 09:47 PM | #19 | |||
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I don't understand the whole sheet thing - you would think that thread count is everything, but it doesn't always work that way. Really frustrating!!! I like to get things at Ross (a discount chain) when I can, because the prices are so great and often on name-brand stuff, but for some reason, even the name-brand sheets with high thread count are very often NOT smooth! I've given up on sheets at Ross - I go with Kohls or Bed, Bath and Beyond, because they'll let you return them if you're not happy with them.
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11-05-2013, 09:28 AM | #20 | |||
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That is exactly what happened. I thought the thread count would equal softness... I was wrong. Since I can't seem to find my receipt (I think it was in the bag I threw away, damn it) I think I read once that if you put salt in the wash that it will soften them, but I'll have to look that up again to be sure. For the money I spent, I guess I am willing to try. Indeed, VERY frustrating!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004 Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else. Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb, |
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"Thanks for this!" says: | RSD ME (11-05-2013) |
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