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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Beth and welcome to the boards! :wave:
I'm so sorry to hear about your husband. RSD/CRPS is a horrible thing that I wouldn't even wish on my worse enemy. It sounds like he could have had some form of RSD before the knee replacement. RSD occurs when the path of normal healing doesn't work. I'm sure the surgery aggrevated it and the shooting pains and numbness are definite signs of RSD> I'm sorry to hear that the blocks didn't work. The blocks should be done when RSD/CRPS is first suspected, so hopefully it will go into remission. I didn't have luck with my blocks either, but it had been 2 years before wc approved them. :rolleyes: Your husband should immediately go apply for social security disability. You qualify from when you apply, but there is a 6 month period before you can receive it. So he needs to apply asap to start the clock ticking.
To answer your question to how fast RSD get worse or better, I would say everybody is different. Mine started before they even did my neck surgery. My hands would turn red, white and blue, severe temp. changes, fixed claw position, severe muscle spasams, lack of sleep because of pain, etc. After my surgery, which they hoped would fix it, it started right back up when I started PT for the 4th time, and got worse if there is a worse. As far as meds go I think he shoud see a new pain specialist. Others have good luck with just lyrica and elavil, but stay away from neurontin. It took me several doctors before I found the right doctor and by that time I was pretty much bed ridden and so thin. I'm on 180 mg of MSCotin a day (extended release morphine), 5 percocets for breakthrough pain, 3 soma, 3 xanax, and remeron to sleep with. I used to be on more pills. It's finding the right combo of meds that work so you are not in so much pain, and can have some kinda life. :)
I also would seek an attorney' advice. They are necessary evils, but you never know when someone might try to pull the rug out from under you. I'm glad that he is going to see a neurologist. A triple phase bone test may or maynot prove that he has RSD. It's a 50/50 chance. But an MRI or cat scan may be a valuable test because they can see soft tissue damage. Make sure he never puts ice on the limb either. He needs to move the limb as best as tolerated, maybe in water to take the weight off. But if he is in so much pain, it will be hard for him to do anything. Maybe you should right down how is pain feels, and when it the pain gets worse and if anything helps the pain, and take these questions into the neurologist. I'm not sure if you live in a small town or big city, but I would defintly seek another pain doctor's opinion even if you have to travel an hour.
Your friend was right so go down to social security and get him signed up for disability asap. I hope this helps. You got a great support team here. I hope some others can offer some good advice as well. Have your husband read through some of these posts(or you read them to him), and see if this seems to give you both an idea of what you are up against. Good luck and my prayers are with you. Aloha Skooze :)
skooze...
thank you so much for your reply.It really helps to get advice from someone who is going through this.I told my husband that we would go ahead and see avout ssd and get the process started I know that that is a long process I went through it in 1999 and didn't receive disability until 2001.{mine was due to back problems and nerve damage} but the sooner you get going the better off you are I guess. I read him your answer to my post and he is very thankful to you for all your advice.He still dosen't exactly understand about it I'm doing research but he seems to think it will all go away with time and he can go to work somewhere and be fine.{he's stubborn} I mean im all for him being able to work if he can but with the situation he's in now it dosen't make sence to go get a job somewhere else lose his insurance espically with him going into ltd and then not be able to work later and lose everything. we go to the Y and he does the stationary bikes and the treadmill and leg pushes and winds up hurting after ...is this bad for him? should he stop? I know I am asking alot of questions but I want to protect him from doing anything that could be worse. Also he is going to the same pain clinic that I go to{not the same doc though unfortunatly} but this doc specializes in rsd patients he is ok but to me he seems almost overly cautious espically with meds. I know what it is like to live with pain constantly and sometimes pain meds are your best friends but richard{thats my husband}says as long as he can do without he will{again...stubborn} I read several reports about the areas that are affected I just don't understand why your bones are affected? I know that when we go back to the pain doc I am going to have richard ask for a dose increase of lyrica.he is on 75mgs 2x day the doc said he was going to start him low and build but he has been on it for 6 weeks and he says he feels nothing. I myself take neuroton{sp} I have been on 800mgs 3x day and would die without it but I don't think that neuroton works as good with rsd as lyrica
I don't know but I know that the 75 mgs of lyrica are not working for him....he just needs to learn to speak up but he has always been very quiet. so ........ Sorry for talking{?} so much it's just nice to talk to someone with some knowledge.
thank you SO MUCH!
beth ;)





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