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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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11-17-2017, 05:39 PM | #1 | |||
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I had sedation when they put the leads in but not when they came out...it was just sit on the bed in the room and they pulled them out. That one shock and then the wiping with alcohol after were the worst bits. Having been through it I actually would be surprised if they gave sedation for that...and I'm someone who has the dentist put me under sedation...lol. Thanks for the support and sharing your experience with me.
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"Thanks for this!" says: | RSD ME (11-30-2017) |
11-28-2017, 05:04 PM | #2 | ||
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11-28-2017, 08:37 PM | #3 | |||
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The pain is rough after having that small period of relief. Thankfully...when the trial was over it took about 16 hours for the pain to creep up to the pre-DRG levels. I was worried it would be like BAM the pain is back but it was gradual over the course of the day. But after a week of MUCH lower pain levels it's hard to swallow this level of pain again. I get the permanent one two weeks from yesterday...it feels like forever away still but I am trying to get things like Christmas shopping and wrapping done before then because I will have the restrictions of no stretching, reaching, lifting, etc and I want to have as much done as possible before then with that stuff. But every day is a struggle now. Not that it wasn't before the DRG...but the pain relief was so good during the trial that it's just hard to have the pain back. But I know it will go down again in two weeks so I am just focused on that and on getting things ready for then.
I did have one flare up during the trial where the pain went up but it only lasted a day and I was able to adjust the levels up to help a little. Good luck to you...I hope it works out and you get some good relief! I've also heard that sometimes having them reprogram the unit can increase relief. Have you called your rep? |
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"Thanks for this!" says: | RSD ME (11-30-2017) |
11-28-2017, 11:53 PM | #4 | ||
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I go in tomorrow to have it removed so maybe the rep can shed some light on the pain increase. I have cold crps and the drg hasn't really changed the very cold feeling in my foot. Did your extremities feel warmer while in the trial? |
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"Thanks for this!" says: | RSD ME (11-30-2017) |
11-29-2017, 01:23 PM | #5 | |||
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Senior Member
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My limbs used to be cold all the time but now that only happens during flare ups where the area flaring gets ice cold...though according to dr measurements there is always a slight difference where the rsd limbs are colder. Since my pain was so much lower I didn't notice the cold at all except on the one day I flared. I'm surprised the rep didn't come out to change your settings or have you come in. Mine called every day to check in and I went in 3 days after the trial started for a check in but since I was getting good relief they didn't need to make any adjustments. I have heard some stories where people just had ok relief but after getting it adjusted it was amazing. But like everything else I suppose with CRPS no treatment is going to work the dame for everyone. I hope you get some answers from the rep and dr.
Last edited by catra121; 11-29-2017 at 01:25 PM. Reason: Typo |
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"Thanks for this!" says: | RSD ME (11-30-2017) |
12-10-2017, 01:43 PM | #6 | |||
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Tomorrow is the big day! My check in time is 7:45am...and they said if everything runs on time that I should be out by noon. Fingers crossed it all goes smoothly!
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12-10-2017, 08:29 PM | #7 | ||
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catra,
You will be in my thoughts and prayers that this procedure will go well and will result in significant pain relief. Wishing for you the very best! brightcloud |
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