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 10-24-2013, 08:56 PM #1
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Default Zookester, Where Are You?

I just wanted to say hi and that I hope your okay. I miss you and hope to hear from you soon. My thoughts are with you always.
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Old 10-24-2013, 09:12 PM #2
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Same here Tessa...hope you are ok
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Old 10-25-2013, 03:43 AM #3
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Ditto Zook, hope you're away for positive reasons and not because of a bad flare or something. Take care.

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 10-25-2013, 08:51 AM #4
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Default Hey everyone!!

Oh thank you all for reaching out on this thread and through PM's it truly touched my heart. <3 <3

I've been away mostly trying to really focus on my daily regime. Pain has been exquisitely high as our temperatures keep dropping (22° right now) and it has almost completely engulfed my opposite leg. I don't have to explain to any of you how scary that is.. but that is why I have been silent. Due to the location of nerve damage and where CRPS II was initiated (in my groin crease or where the hip/thigh bend) makes sitting very difficult so I haven't been at my computer much these days

We also have family coming into town and a big gathering at my house on Sunday... we have all been there.. people assume that we are "home" so we should be the ones preparing the feast and being the host, ugh. I am happy to do it but, as you all know well it does add additional anxiety and pain to our lives that others just don't understand. So.. I am trying my hardest not to let pain/anxiety override the joy I will have in seeing all our family together after such a long time.

Thank you all again for reaching out.. I am okay

Wishing you all a tolerable day, sprinkled with moments of happiness that make you forget all about CRPS even if for only a minute.

Tessa
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Old 10-25-2013, 09:10 AM #5
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Default PS., warmth without more pain

Oh Oh I forgot to share with you all my new find for adding warmth to my hip/legs without increasing pain from the clothing itself.

So I have a real challenge (like many of you) with even the slightest touch or pressure on my skin, making clothing a real challenge. For me what works the best is clothing that stays in one place and has a slight compression like yoga pants but not the type that are loose at all. Tactile stimulation of any kind sends me into a tail spin of pain in short order Battling the cold has made this even more challenging... But I have finally found a base layer from Patagonia that keeps me warm without adding pain, made for expedition mountaineering and worth every penny! Here is the link if anyone else is looking for something like this:

http://www.patagonia.com/us/product/...toms?p=43691-0
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Old 10-25-2013, 10:50 AM #6
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Hi Tessa, I'm sorry your pain level has been higher because of the cold weather. And I hope your family get together goes well. I don't have many myself, but understand, because when I do, I get really stressed out because of the cooking and cleaning involved. My husband helps, but I want to try to help too while trying to hide the pain I'm in. Especially when my son comes over with his girlfriend. I know it's hard, but try not to overdo it. You have to take care of yourself. You've been through so much and I'm sure your family would understand. I wish I could come over to help, but I'm a lousy cook so that probably would make things worse! And thanks for the patagonia link. I'm going to check that out. My legs are bothering me alot lately, especially my right leg and hip. I hope the weather warms up for you and that you have tolerable day with happy moments too. From your friend, RSD RENEE.
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Old 10-25-2013, 09:08 PM #7
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Oh Tessa, it is tough to deal with spread. I am so sorry hon. And yes, the added stress of entertaining is hard too. I hope you get through it alright and that all the work proved to be worth it for an enjoyable time.

And BTW, those are some NICE pants! I may have to check those out. Thanks for sharing!
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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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