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 05-12-2017, 04:47 AM #11
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Catra,

Here's to keeping our fingers crossed that it is in your favor and shows what you truly can and can't do. That you can't do things like a regular person, we all know!

Good luck!
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 05-12-2017, 03:15 PM #12
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Thanks everyone. I'm now over a week since the FCE and my hands are still not recovered and are in a flare up. In addition to the bone crushing pain they are also very hot to the touch and stiff...I'm guessing from the swelling. I can't get in to see my pain dr until June 29th but I think I may go in to see my primary care doctor and see if they can do anything for the swelling and inflammation since over the counter stuff doesn't seem to be working to at least give me relief on that end. Maybe if the inflammation goes down then the flare will ease up a little too.
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Old 05-15-2017, 04:41 AM #13
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Quote:
Originally Posted by catra121 View Post
Thanks everyone. I'm now over a week since the FCE and my hands are still not recovered and are in a flare up. In addition to the bone crushing pain they are also very hot to the touch and stiff...I'm guessing from the swelling. I can't get in to see my pain dr until June 29th but I think I may go in to see my primary care doctor and see if they can do anything for the swelling and inflammation since over the counter stuff doesn't seem to be working to at least give me relief on that end. Maybe if the inflammation goes down then the flare will ease up a little too.
Hi Catra, my RSD specialist prescribed celebrex to reduce inflammation in addition to my regular medications when I overdid it and the swelling/nerve inflammation wouldn't go down on it's own. I had to take it for many months. I had over ambitiously tried to use a palm sander for a very short time to do something at home without realising how bad the vibration would be for my CRPS/nerve damage. This strategy of adding celebrex or similar to reduce inflammation is something you could potentially discuss with your primary care doctor to help settle things down until you see your specialist. In my situation, reducing the inflammation helped me manage the flare up of nerve pain.

Hope you get some relief soon.

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Old 05-15-2017, 10:48 AM #14
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Went to the doctor this morning and they are putting me on a tapering steroid for a week. They said if I need to repeat it they can do that...but hopefully just this one treatment will give me the relief from inflammation enough that the flare up settles down. I am really struggling not being able to use either hand. The same toys have been on the floor in the living room, covering it, for about a week now because I just can't pick them up. So much stuff I want to do and I just can't even attempt with the way my hands are flaring up. Just feeling SO drained after almost 2 weeks of this increased pain and inability to do stuff. Pretty much just want to lay on the couch and not move...but that's really messing with my mood and is making me feel super depressed and sad. Ugh...keep waiting for things to start turning around..
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Old 05-15-2017, 07:58 PM #15
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Dear Catra,

I am so sorry that you're going through so much. It is so frustrating when you can't do what you need to each day. I would be more than happy to come by myself and pick up toys or grocery shop if I were anywhere near. It is completely understandable that your mood would be affected by all this. Even the messy house becomes a symbol of all the things we don't have control over. I remember when I was at my worst and had out of town company stay that kept causing mini explosions in my kitchen and it just drove me nuts because I needed that ONE thing to be orderly. I know you're tired of being patient and waiting for the turnaround. But I also know that you WILL get through this.

I found steroids helpful when I was acute. The tapering dosepaks like Medrol are not very strong. If you don't get relief a repeat may help. The prednisone dose that I've seen in studies for new CRPS is 10mg 3x daily for 10 days, so quite a bit more. My pain doc gives dosepaks for flares and even wrote me one to have on hand in case of emergency while traveling. Hopefully the steroids will get things calmed down.

I hope you feel better very soon. Sending hugs and healing love,
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Old 05-16-2017, 10:11 AM #16
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If you are able to take an hour here and there and sit and calm and elevate your hands that could help. I always elevate my feet when I can and that helps a lot with the swelling. I realize that with a child that's less possible, and harder with your hands than with your feet, but as miserable as you are, it might be worth it?
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Old 05-16-2017, 05:18 PM #17
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Quote:
Originally Posted by Becca71 View Post
If you are able to take an hour here and there and sit and calm and elevate your hands that could help. I always elevate my feet when I can and that helps a lot with the swelling. I realize that with a child that's less possible, and harder with your hands than with your feet, but as miserable as you are, it might be worth it?
I will try it...can't hurt...except that I can't elevate my left one too much because of my shoulder pain. But it's worth a shot.
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Old 05-17-2017, 09:56 AM #18
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I am so sorry you are suffering so much Catra. I hope that you don't have to go through anymore painful tests and that they approve your DRG trial soon if you still want to do that. I was on prednisone early on for my rsd and it helped a bit with the pain and swelling. I was only on it for a few months because my neurologist said it wasn't good to be on long term and also because it stopped helping after that. Also very hard on my stomach. But it helped short term and I hope it helps you too. Hugs and Prayers to you my friend.
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Old 05-26-2017, 03:03 PM #19
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I started a second dospak of steroids this week...hopefully this will help get me back to baseline with the pain in my hands.

I got the report from the therapist today and it confirms that I am unable to perform even part time sedentary work. Although I knew that this was true...it was actually very hard to read it in black and white. Fingers crosses, this report that has put me in a bad flare up for 3+ weeks now will be worth it and help me successfully appeal the long term disability denial. I also hope that it will help with my work comp claim as well...though I anticipate that a resolution on that front is a lot further away.
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