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 05-25-2013, 12:34 PM #1
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Default My Trial SCS

Well, I got my Trial SCS on thursday. It was more painful than I thought. I feel like I had surgery instead of needles placing the leads. My back hurts very much. I haven't seen a big difference in my left leg/ankle (where my CRPS is). The buzzing kinda hurts actually. I have to have it so low I can barely feel it. I don't know if it will work out yet or not because I haven't been able to do much because of the pain in my back. They say to give it a few days before it will work though, so I will keep you posted. As of right now, I don't know what to think. I am just hurting.
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Old 05-25-2013, 02:56 PM #2
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Hi Angelina. I really hope your back settles quickly and your pain lessens....hopefully your SCS will begin to have an effect on your pain and you can feel a bit more human

I'll have my fingers crossed for you, and send you a gentle hug in the meantime....hang on in there

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 05-26-2013, 03:16 PM #3
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I'm so sorry - it's so hard to have to go through the pain of a surgical procedure in order to get pain relief. Know that people here understand and are rooting for you! I've heard of many people that get good pain relief from a SCS. Keep us updated!
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Old 05-26-2013, 04:20 PM #4
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I am just at a loss. I really don't think it is working. In fact the buzzing seems to hurt my leg still. They said to give it a couple days to get used to it, and I am, but it is not pleasant. My back still hurts. I was able to go to town today for a few minutes. It was nice to get out of the house and try out walking around a store with the SCS. It is just hard because I am by myself. I hate going through this alone. Everyone wants it to work so bad that I feel guilty saying that I don't think it is working. This has been the worst last couple days! I am trying to stay positive and thinking that maybe it will get better, but all I want is for it to come out! I don't think this was a good idea.
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Old 05-26-2013, 05:58 PM #5
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Oh Angelina I'm so sorry it's not doing as you hoped yet... Maybe things will settle down after the first few days and you will feel a little better.

I read around a bit about SCS, and it seems that the positioning is all important, and that quite often the position has to be tweaked to find the optimum place where it gives relief where it is needed. Hopefully when you return for your evaluation they can work out what is going on and improve things.

It must be terrifying dealing with this alone, I think you are incredibly brave. Don't give up hope, it is very early days and you may yet be lucky with it .

Fingers still crossed here!

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 05-26-2013, 10:17 PM #6
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Angelina, so sorry for your continued pain. I'm pulling for you. I would love to see this work for you. I too understand your concern that it may not be fitted just right. Know we are with you.
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- CRPS Type II with migraine, Dystonia and spasticity
- Diagnosis 2010 following
- Injury 2004 L5S1; 2nd metatarsal left foot fracture; left hip fracture
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Old 05-27-2013, 12:38 AM #7
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Angelina....have you tried messing with the frequency setting? Usually it is a setting that has to be "unlocked" by your rep so that you can try changing it yourself. All of my issues are in my left foot (forefoot specifically), and the frequency really made the difference for me with regards to what feels good and what does not for the foot. I did NOT like the sensation at all...until I canged the frequency
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Old 05-27-2013, 09:14 AM #8
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Quote:
Originally Posted by CoralToe View Post
Angelina....have you tried messing with the frequency setting? Usually it is a setting that has to be "unlocked" by your rep so that you can try changing it yourself. All of my issues are in my left foot (forefoot specifically), and the frequency really made the difference for me with regards to what feels good and what does not for the foot. I did NOT like the sensation at all...until I canged the frequency
Well I can change between groups and how strong it is. The sensation just hurts, it doesn't matter how high it is. I have to have it to where I can barely feel it. And it seems to make my pain worse. Did your back hurt? I feel like my back pain is almost worst than my leg. It has been 4 days and it hurts so bad. How long did it take for you to get "used" to it? The sensation? To start seeing a difference?
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Old 05-27-2013, 09:23 AM #9
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And then I thought I had pulled the wires out, so I called my doctor and he was so rude! I get that it is Memorial Weekend and you are probably having fun, but I was hurting. I was getting a headache and weakness. He told me If you did pull them out there is nothing I can do. and I don't know why you called me. He didn't even give me any answers or help me in anyway. I know I didn't pull out the wires because I can still feel it in my leg, but the way he handled it was just *&$%^....lol
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Old 05-27-2013, 10:32 AM #10
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Not that I am recommending this, but when I had my trial leads pulled both times it was very easy. I'm so sorry this isn't working for you. I have back pain with some of my programs with my permanent. My rep said it was love it or hate it usually with rsd. anyway, hope you start feeling better. Having it not work over a holiday weekend must be terrible. Hope you have low pain. I did have to tinker with my settings a bit during both my trials. Anyway, I hope it looks up for you. Thoughts with you!

TK

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