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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Old 03-25-2014, 04:15 AM #21
Brambledog Brambledog is offline
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Hey Lottie thank you for your input, that's really helpful. I definitely don't want surgery of any kind, so I'll be avoiding it like the proverbial plague...the main reason I've been so frustrated by the delay in seeing the physios is that until I've talked with them, I can't be sure whether the care with my posture (and the ways I'm sitting and standing) is making things better or worse.

Vrae, as I've mentioned before, I'm really not doing many exercises. I'm just doing a few clams, buttock squeezes and abdominal clenches, and my usual pelvic floor. Literally just a few a day. and that's just because I lost so much tone and strength everywhere while I was so ill, and I didn't want to carry on losing that strength completely any longer. Hip, bum and abdominals hold everything together...

I'm ok today, a bit sorer than yesterday, but not bad. Ups and downs I guess. I'm trying to work out when to call things to a halt before they start to hurt, a whole new type of pacing to work out! I still think overall it's improving. And my biggest issue is still finding a position in bed to relax in with my feet up when the crips shouts too loud...if I lie completely flat I can't do anything to pass the time, and then I just end up getting down and frustrated with my own thoughts. My best so far is several pillows arranged behind me on a slant, and a small one in my lumbar curve. I end up lying at about 150 degrees. I move after half an hour anyway.

Thanks everyone for this discussion, it's so helpful every little bit of info and advice you can give me. Hope you guys are doing ok today.

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.

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Old 03-25-2014, 05:27 AM #22
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Just one more quick thought. you mentioned that you were using pillows.. I find it helpful to put one in between my legs if I am laying on my side.

Go you that you're able to do any exercising! Atta girl that your keeping moving as much as you can! I just didn't want to come off sounding like ... now drop and give me 20 lol.. My memory sucks too... sorry about that, but I do remember now.
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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.

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Old 03-25-2014, 09:48 AM #23
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Lol Vrae, you do make me chuckle

I've been trying to do the pillow between my knees thing when I'm on my side, but I do sometimes forget, and when I'm asleep it doesn't stay there long!!!!

Spoke to physios today and got some pointers and advice. They're happy with what I'm doing and are sending me some info and physio sheets out.... I must be patient. Lol.

Bram x
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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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Old 03-25-2014, 01:08 PM #24
Lottie Lottie is offline
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good job, Bram!
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Old 03-26-2014, 01:51 PM #25
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Hi Bram, I hope you start feeling better soon my friend. Try to get as much rest as you can, though I know it's hard with young children around. I remember those days well. You are always in my thoughts and I hope you begin to recover quickly. With much love, Renee.
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