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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Re: TENS Unit
Mar 22, 2009
Thanks again Karen. I thought so about the SCS and couldn't understand why he was so reluctant to let my try the TENS to just get a sample before giving into his SCS demands. The TENS helps some, only on one spot, but I swear it's made the swelling and edema worse and I can't get it to work right on ankle joints as the electrodes just don't go where they need to. I'm assuming the SCS could make the swelling and edema worse as well?

I've only RSD for about 5 months, but the pain is everywhere, the pain under the ribs is driving me nuts and I don't think I should be shocking my organs LOL.

I think the stress of dealing with my short term disability people and having to call the Dept. of Labor after being thrown out of work to get FMLA has made it spread. Not to mention being given the diagnosis and no facts whatsoever about the disease and being kicked out of my house due to the fact that me being sick was upsetting the roomie and his girlfriend. That got so ugly I called the cops to report it in case something happened to me.

Then the pain doctor ruled out everything but a stimulator at the first visit. He looked at my feet and my chipped and not growing toenails (I'd painted my toes a month before and there was no growth on the original foot) and muttered to himself it's too soon for that.

The PM did 2 blocks that only lasted a day and a half for the pain, and not total relief, just some and did nothing to relieve the burning and I swear caused the spread into the other side's sacroiliac joint. The only benefit from the block was it got my ankle moving again. I was waiting for a call back that never came because he wasn't sure what to do since the blocks weren't working the way he wanted according to the Medical Office Assistant when he found out about the sacroiliac joint pain by accident. I stopped in to sign away my privacy to medical records for short term disability and asked when or if they were going to see me again since I'd been waiting for a call for over a week. I could hardly stand from the pain and I was and still am on crutches. They wanted to do another block the next day and I begged them to wait until the pain from the last one (sacroiliac joint on the opposite side) went away at which time he decided he could spare 10 minutes to see me. He couldn't figure out why I would hurt that bad there. I got no PT until the sacroiliac joint went and then for only 5 weeks with no pain management from him. I dropped a glass light covering on my good foot and it spread from there up to the knee with pain mirroring the original side, plus the top of the foot pain. In the last 2 months it's moved into shoulders, wrists and fingers, plus under the ribcage.

I ended up stopping a couple of the PT exercises and it has helped with shoulder pain, but not the numbness and finger/wrist pain. I have new exercises that really hurt. When do you stop them because of the pain? How do you know when you're being a wuss and when to go on with them? I have to go to bed for 1-2 hours after doing 1/2 hour of new exercises aimed at improving balance. (I fall like a drunk all the time) These are things that I could have done in 10 minutes and asked for more 5 months ago.
I've got the swiss cheese memory and headaches. I twitch and jerk, which the neurologist blames on the morphine and doesn't need to see me anymore after 2 whole visits. The pain doc jumped right on board with that since I really don't think he has a clue about RSD other than put in the SCS and bully the patient until they cave and let him do it. Now he won't do it due to anxiety and panic attacks and the fact that my pain is "largely psychological" now since he finally looked at my chart and noticed the spread for the first time at my last visit. I got a referral to a new clinic, but I called about the appointment and discovered that while the referral was sent, my records weren't so I'm going to have to call again on Monday to see if they sent the records or if I need to remind them again.
I see the psychiatrist on Tuesday and I'm hoping he has a clue. One of his specialties is pain management (made sure of that as I want to fire the psychologist after the last session) and I hope that he can help. Since the neurologist wrote everything with the twitching off as drug side effects, my GP has been suggesting they are all psychological and I need a psychiatrist, not a psychologist and my anxiety and panic attacks bother him. LOL they bother me too!

Sorry that turned into such a long post. I'm just looking for answers other than the SCS. I called my original second opinion people who think I'm schizoid and they won't do anything but follow the current guy's suggestions since he's written papers and is a "big dog" in this area. I can't wait to fire him and I so want to file a complaint about his breakthrough pain prescription and black box warnings that were not explained or followed. I don't think this stuff should be prescribed for anything other than the osteoarthritis it is meant for, if at all.

I did get my $30 back from Walgreen's though. LMAO!

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