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 01-22-2014, 04:42 AM #11
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I've had some chills on my left side around my ribs round to my back. Freaks me out because I've had some muscle spasms in my ribs/chest that feel very scary, and I'm afraid the chills will set it off. I hate getting dressed on a cold morning!!!

Really glad to hear your wound is behaving a bit better than it was. Take care of yourself.

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.

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Patella femoral arthritis both knees.

Keep smiling!
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Last edited by Brambledog; 01-22-2014 at 04:43 AM. Reason: Muppetry...
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Old 01-22-2014, 09:19 AM #12
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Quote:
Originally Posted by zookester View Post
Hey Nanc,

I am sorry you are having such a rough time of it! Near the area of nerve damage that caused my CRPS II if I touch that area it will send an ice cold rush down that nerve path even though it feels as if the skin has been removed and someone is pouring alcohol or salt on it BURNING constantly. I really hope that is just your sensory nerves healing normally. One thing you might want to do right away is start desensitizing that area by touching and stroking it with a flat palm, soft cloth etc., this will help the nerves respond to good stimulation and can help reduce numbness that often occurs after surgery along the incision site. I remember my doctor telling me that spread should be treated as a new diagnosis and treated aggressively as soon as symptoms start. That is what I am doing with my arms and they haven't worsened as quickly as my opposite leg.

Sure hope you turn a positive corner soon!!
Hi Nanc. I hope you're feeling a little better today. I don't have CRPS II, but know that with CRPS I that surgery with rsd takes a long time to heal. (at least in my experience.)
And Hi Tessa, I wanted to thank you for bringing up drs wanting to treat spread aggressively. I thought that's what they wanted to do with spread too, and was surprised when the NP at my pm drs office said to wait until spring to talk about treating my rsd spread. I need to talk to my pm dr next month and ask him to treat is asap. If they don't want to I think I will be seeing a new pm dr asap. I sort of feel like they have given up on me since I've had rsd for over two years and don't qualify for a SCS anymore. I don't think that I'm going to make them much money anymore so they just don't seem to care as much. (maybe I'm wrong, but my gut is saying otherwise.) I'm also going to try to wean off the percs that they are giving me. They say I don't take a high enough dose to have it affect my organs, but I feel sick to my stomach when I take them anymore. They do help with the pain, but at what cost? It's just not worth the risk to me. I hope that new drug gets approved for RSD (Neurondrate (sp?) so that maybe we can all take it and get rid of RSD once and for all.
And Nanc, I'm sorry again for getting sidetracked. I wanted to tell you too that when I was healing from my surgical wounds, I felt like a ping pong ball with my drs. None of them could explain the prolonged pain I felt and would pass me on to the next dr until I finally had my pm dr and endo dr say that I probably had rsd spread. Also, that was around the time I got fibromyalgia too. My neurologist confirmed that. I hope that doesn't happen to you, but just be careful to tell all your drs every pain you feel and have them document it, so that you are sure they don't just push you off to the next dr to try to explain your pain. Take care my friends. My thoughts and prayers are with you all, in hopes that you all have a pain free as possible day today. With love, Renee.
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Old 01-22-2014, 09:55 AM #13
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Quote:
Originally Posted by Brambledog View Post
I've had some chills on my left side around my ribs round to my back. Freaks me out because I've had some muscle spasms in my ribs/chest that feel very scary, and I'm afraid the chills will set it off. I hate getting dressed on a cold morning!!!

Really glad to hear your wound is behaving a bit better than it was. Take care of yourself.

Bram.
Thanks for giving me a reason to chuckle this morning.. I loved your reason for editing "muppetry" not sure what that meant really but it did give me a chuckle since all I could envision was Beaker, Kermit & Gonzo dancing around. IDK.. why I thought that was funny, thanks!
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Old 01-22-2014, 10:02 AM #14
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Quote:
Originally Posted by Brambledog View Post
I've had some chills on my left side around my ribs round to my back. Freaks me out because I've had some muscle spasms in my ribs/chest that feel very scary, and I'm afraid the chills will set it off. I hate getting dressed on a cold morning!!!

Really glad to hear your wound is behaving a bit better than it was. Take care of yourself.

Bram.
Ditto for me Bram. I laughed at the Muppetry comment too. I don't know what that really means but it made me laugh. I thought of Kermit the Frog when I read it. You are so funny! Thanks for making me smile as well. Take care my friend.
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Old 01-22-2014, 01:45 PM #15
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Quote:
Originally Posted by zookester View Post
Hey Nanc,

I am sorry you are having such a rough time of it! Near the area of nerve damage that caused my CRPS II if I touch that area it will send an ice cold rush down that nerve path even though it feels as if the skin has been removed and someone is pouring alcohol or salt on it BURNING constantly. I really hope that is just your sensory nerves healing normally. One thing you might want to do right away is start desensitizing that area by touching and stroking it with a flat palm, soft cloth etc., this will help the nerves respond to good stimulation and can help reduce numbness that often occurs after surgery along the incision site. I remember my doctor telling me that spread should be treated as a new diagnosis and treated aggressively as soon as symptoms start. That is what I am doing with my arms and they haven't worsened as quickly as my opposite leg.

Sure hope you turn a positive corner soon!!
Sorry to side track this thread, but I have that exact sensation on my original location. Of course I'm not glad for either of us, but when I try to explain this people look at me as if I've become just overly dramatic. It feels as if there's a new incision with tabasco sauce poured in. Thanks for the insight about spreading.
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Old 01-22-2014, 01:48 PM #16
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Nanc, are you keeping notes on your symptoms? Please remember your
Vit. C and maybe a heating pad on the site?
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Old 01-22-2014, 01:57 PM #17
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Originally Posted by AZ-Di View Post
Nanc, are you keeping notes on your symptoms? Please remember your
Vit. C and maybe a heating pad on the site?
Hey Di! I am keeping notes for a change (trying to get better with that). I cannot take Vit C because of my interstitial cystitis (it irritates my bladder ). Dr told me not to use heat on the incision sites because of the allergic reaction, heat will make the reaction worse. But maybe I can use heat after they heal up. My sister-in-law gave me a really cool heat pack for Christmas
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Old 01-22-2014, 02:22 PM #18
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Originally Posted by Nanc View Post
Hey Di! I am keeping notes for a change (trying to get better with that). I cannot take Vit C because of my interstitial cystitis (it irritates my bladder ). Dr told me not to use heat on the incision sites because of the allergic reaction, heat will make the reaction worse. But maybe I can use heat after they heal up. My sister-in-law gave me a really cool heat pack for Christmas
Oh Nanc, I'm sorry I should have remembered that. Please forgive the "duh"
moment? And of course you're still very early from surgery for any heat.
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Old 01-22-2014, 02:23 PM #19
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Nanc, I love the idea of a really cool heat pack

Hope you're doing ok today x

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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Old 01-22-2014, 02:41 PM #20
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Quote:
Originally Posted by Brambledog View Post
Nanc, I love the idea of a really cool heat pack

Hope you're doing ok today x

Bram,
You like that huh Bram haha!

And thanks, I am doing ok. I finally slept this morning, so that helps. Was up again last night with the itching. I think the bacitracin is irritating me now...argh! But I can see that they are drying up even more, so that it good! Having a lot of discomfort in that front incision, still. I am impatient and need to listen to my body and continue to relax
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