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 08-30-2010, 06:15 AM #11
gabbycakes gabbycakes is offline
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Originally Posted by llrn7470 View Post
I have been doing well for quite a while, but over the last 3 days, I have had a flare of my RSD and my leg is humming. I have my SCS turned up so high that my leg is actually twitching, but how can you stand that for any period of time? I broke down and had my pain MD paged last night and he was out of town and recommended for a one time increase in my Lyrica, extra Percocet, and I took extra Baclofen, but was still up all night. He said that I can get oral Dilaudid on Monday. Both of us agreed that it would be stupid to go to the ER as it was a Saturday night and that fact that they have no idea what to do with me (no clue about CRPS). They would just knock me out and send me home (at least he is realistic, which I love about him.)
I'm just done. I know that we all get to this point, but I'm done with this crap. I'm exhausted and can only sleep for small stretches at a time. My eyes feel like fire, yet, I can't sleep. He can't get me in for a block until Tuesday, so this is my life until then.
Sorry, just needed a pity party. I know that many of you are so much worse off than I am, but you know how it gets when you're exhausted and hurting.
Hi Linn,

I have also had some pretty big flares this summer the humidity is a killer for me, everything swells the pain gets worse and yes it exhaust me. So if it's any consulation I can feel your pain. I also work, PT, which when I'm in a flare I just don't even want to be there. My job is not physically demanding but is very mentally demanding. I hope this week brings some relieve even though I here it is going to be very hot.

Feel Better

Gabbycakes
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Old 08-30-2010, 04:39 PM #12
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Quote:
Originally Posted by llrn7470 View Post
I have been doing well for quite a while, but over the last 3 days, I have had a flare of my RSD and my leg is humming. I have my SCS turned up so high that my leg is actually twitching, but how can you stand that for any period of time? I broke down and had my pain MD paged last night and he was out of town and recommended for a one time increase in my Lyrica, extra Percocet, and I took extra Baclofen, but was still up all night. He said that I can get oral Dilaudid on Monday. Both of us agreed that it would be stupid to go to the ER as it was a Saturday night and that fact that they have no idea what to do with me (no clue about CRPS). They would just knock me out and send me home (at least he is realistic, which I love about him.)
I'm just done. I know that we all get to this point, but I'm done with this crap. I'm exhausted and can only sleep for small stretches at a time. My eyes feel like fire, yet, I can't sleep. He can't get me in for a block until Tuesday, so this is my life until then.
Sorry, just needed a pity party. I know that many of you are so much worse off than I am, but you know how it gets when you're exhausted and hurting.
NEVER apologize on this board for giving yourself a pity party....EVERYONE here knows how you feel and sometimes when I can't talk to anyone else, there is someone that will give me a shoulder to cry on...I can't say how to control my flares, but I am learning to brace for them and so is my family....this board saved my life and my family
Gentle Hugs
Cindi
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Old 08-30-2010, 04:46 PM #13
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Heart Cindi...

Quote:
Originally Posted by cindi1965 View Post
NEVER apologize on this board for giving yourself a pity party....EVERYONE here knows how you feel and sometimes when I can't talk to anyone else, there is someone that will give me a shoulder to cry on...I can't say how to control my flares, but I am learning to brace for them and so is my family....this board saved my life and my family
Gentle Hugs
Cindi
You got it sista... Such a sweet post and you are right on..As this family of RSD'ers we have here are just wonderful..We all need a place to turn when our life with RSD makes no sense!! ..

hugz, Kathy
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Old 08-30-2010, 05:12 PM #14
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To get me through until Wednesday, my pain doc got me Dilaudid 4 mg. So far, I've had two (4 hours apart!) and it's backed off a bit. Thanks to you all for the advice, especially turning the stim down. That has seemed to help; now that I think about it, it's sensible not to want to give myself muscle spasms, but in the moment I needed my RSD family to help me out. As always, you guys are the best! Typically, my SCS is my savior, but during a flare, it just complicates things-another lesson learned.
Many many many thanks to all out there caring enough to reach out to me during this. In a crisis, it means so much! Just gotta hold out til my block on Wednesday. Couldn't let another day go by without saying how much I appreciated the kindness and advice.
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Old 08-30-2010, 05:24 PM #15
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FYI,
I had a wonderful weekend, heat and all.
Visited with an old friend on Sat., and another friend on Sunday, ran some errands and got some little things done.
Today?
OUCH!
It's 6.30 or so, and I'm just moving.
Took all my meds, and just need to put another lidocaine patch on my neck.

I notice this: I fell asleep with my neck at a bad angle, and that is killer for me, since I have two discs there. That pain starts more pain elsewhere, what is my notice, is that
"Pain Begets Pain'.

So, I start with the original pain 'spot', and deal with that, and then attack the rest.
I often can't get any better control than anyone else, but, this helps me.

llrn, I am sure happy that you perhaps now will be getting some relief!

love,
Pete

asb
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