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 01-03-2007, 11:08 AM #1
LisaM's Avatar
LisaM LisaM is offline
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Join Date: Oct 2006
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15 yr Member
LisaM LisaM is offline
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Join Date: Oct 2006
Posts: 276
15 yr Member
Default Please help me explain to my SO.....

Him and his mom are both after me for a few things, and they WON'T understand when i try to explain to them. Can you all please help me?

To refresh you....I have TOS in my left side, and rsd in both hands, my right arm, right shoulder, right chest area (exacerbated by the right side TOS decompression surgery).

I'm currently working full time (with the help of duragesic patches changed every 2 days, percocet every 8 hours, topamax at night, magnesium every night for spasms, effexor for the burning pain, and other stuff I can't think of right now), but the office is VERY slow, and my boss VERY tolerant. I've been here 9 years, he's like a second father to me. Most of my typing is on the net, so it's very slow paced. I CAN do this! And, my pain doc says that ppl who work, normally do BETTER, so I don't WANT to stop working. Although, yes, by the time I get home, after the long work day, the long drive, etc, I do hurt like H - E - Double toothpicks and generally can't do anything AT home - but I'm working. And that's a GOOD thing, right?

But...these two are trying desperately to get me to file for disability. Their "thinking" is that, even though I'm working, since it takes so long to get, I should "start the process now and at least get it dated." But I don't understand that. I mean, we KNOW I'll be turned down, right? And then, they say to resubmit it and just KEEP resubmitting it (SO's mom used to work at social services, and if she had a client who should have been receiving disability, that's what she would do is just keep resubing it until it was approved). Cuz their thinking is that "one day" I won't be able to work at all, and at least the process would have been started. Does that even make SENSE to you guys/girls?????

Secondly, they want me to go to the mayo clinic, to try and find someone who can help me better. Now...I keep trying to tell them I'm not as bad off as MANY other people are. My RSD is contained in my upper extremeties, hasn't started to spread anywhere else, is controlled well enough by my pain doc that I can at least get my **** out of bed, and make it to work, get thru the day, and yes, I may be in PAIN, but I'm not as bad off as many of, say, you guys are. I hurt like he!!, but I am VERY sure, having heard so many stories, that I could be worse. So, I don't believe the mayo clinic is for me. Plus, you have to be REFERRED to the mayo clinic, right? And isnt that place for the "lost causes" that 25 other doctors can't help? My SO and his mom say I've already seen many doctors, but that was mostly for my TOS, and not for the RSD. My RSD was dx'd RIGHT away. I KNOW I have TOS, that's been dx'd...I just can't do anything about it except have the surgery on my LEFT side...but I won't cuz the right side surgery didn't go so well, and also made my RSD much worse. So, I'm NOT going to thru with the surgery on that side.

Anyway, neither one of them will listen to me. They want to know what we can do to "make me better." I tell them NOTHING can be done. There is no cure for this. It's just "pain control" at this point. They said my pain ISN'T being controlled. I tell them we can't expect me to have NO PAIN....just TOLERABLE pain. And that's what we're working towards. They say but I cry in pain every day. I say yes, after WORKING AND DRIVING, or doing too much at HOME, not when I've spent the entire day relaxing though. Not when there isn't a "front" moving in. Not when the temp is "just right." LOL! Okay, so there aren't many days I DON'T cry. But sometimes thosse are PITY TEARS! I can't go to the mayo clinic. I can't file for disability. But they DON'T understand. They just don't. Yeah, I may hurt. But it could be worse. Right now, I think I'm tolerable....but obviously THEY DON'T think I am. Maybe THEY can't tolerate me. LOL!

Or do they, and I'M the one who doesn't?

I'm tired of battling with them. Is there a website, or soemthing, that will back up what I'm saying, or what THEY are saying??? Something to prove one side or the other, or even BOTH of our points????

It seems I battle this at least twice a week, and it's tiring and frustrating and I don't want to battle it anymore.
__________________
Hugs,
LisaM

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Visit My Message Board - Helping Custodial Parents Collect Child Support From Deadbeats for 7 Years
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right Side TOS Decompression Surgery 12/2005
RSD Exacerbated after surgery
Still have TOS on left side
RSD On right side, currently in hand, forearm (underside), shoulder, chest, to hollow of throat, and in left hand creeping up into left wrist

Last edited by LisaM; 01-03-2007 at 11:15 AM. Reason: med head!
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