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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


SORRY THIS IS LONG. I need some very honest frank help here guys. I called my sis and got into one heck of a row. Went something like this (minus expletives)
Sis: so you think you have rsd? So what in your mind makes you think so? Do you have burning severe pain everyday? What level?
Me: no, maybe a 2 or less, some days no pain, just uncomfortable
Sis: how much sleep do you get? Under a ceiling fan? Clothes?
Me: uh, at least 8-10 a night, under a ceiling fan on medium, in t-shirt with my doggie in the bed but I take the elavil and neurotin together and they knock me out.
Sis: And you work full time, don't miss any days?
Me: yep 8-10 hours a day
Sis: You spike around in 2 inch heels wearing a bra, pantyhose, suit, make up and all, walking around a six story building and I know you shop all day long on Saturday and Sunday. I know you do grocery shopping, pay bills, do laundry, clean house, cause he flies and is gone most of the time, am I right or what?
Me: Yes, Pam, you are.
Sis: No crutches, braces, wheelchair?
Me: No, but I have this terrible sweating.
Sis: soooo, you don't take hormones, right. You stopped after taking them for almost over 30 years, right? easily explained, goofy. use your head.
Sis: No 10 plus pain every day, no morphine, no pumps, no vicodin, phernagan, anything? emergency trips?
Me: No just neurotin and elavil, and you know I haven't been to the hospital
Sis: So you pretty much function at 100 percent normal, right?
Me: Uh, I guess so.
Sis: Sensitivity to light, sound, motion, traffic, driving, dog, noise, food. touch?
Me: Uh, no
Sis: And you're going to tell me you have rsd when you don't seem to have any of the primary symptoms we test for? Right?
Me: Uh, right, but Dr. Enty said my block confirmed it.
Sis: You do know that most people will have a reaction to a block don't you? How many did you have?
Me: Four on my leg, now going for second on my arm.
Sis: I'm sorry I just disagree with the diagnosis. I'm with the primary. You don't know what in the ___ you're doing sis. Go for a second opinion. It could very well be you trapped a nerve when you jammed your foot. Most if not all rsd, and there are some that go a long time before diagnosis, cases show up much faster than yours. We had one where within a week her hand had clawed and she was almost disabled with swelling and discoloration. Of course, her's advanced to full body very rapidly and that's rare. But you expect me to believe you have one of the most painful diseases we know and you quite frankly, don't have some of the most basic symptoms of this disease. You're spending a fortune based on just one doctor's opinion. Most patients go through anywhere from 25 or more doctors just to find out too late and here you find out after one block. Come on girl, get another opinion. You just don't fit honey. You got diagnosed with severe fibromyalgia and I seem tor remember you saying you just hurt all over, right? Maybe it's your fibro? Go back to your rheumatologist and get checked out. Just get some more opinions before you send yourself to ____ without a basket. I'd hate to see you with this so spend time getting it checked it. Do your homework hon. You do not fit so don't put a round peg in a square hole honey. You've got the rest of your life, you're young, only 54, don't throw it away unless you know what you're doing.

Is she right? Dr. Enty said we just caught it early (he hopes). Should I go to a neurologist like she mentioned? Do I fit the profile? Am I unusual? I guess there's just a part of me that so desperately wants to believe I don't have this. When somebody starts questioning me, I go uh yeah maybe I don't have it, and then I talk to Dr. Enty, and go uh, no guess I do. I sound like a moron today don't I?
hey there...

First let me ask something about your sister? Is she a nurse or a doc?? i am just wondering if she is bc she sounds so confident in what she is saying and telling you!

First you shouldnt doubt your self and how YOU feel! You might feel good one day and then like [email protected]%% the next. Thats how RSD works and yes RSD is one of the severe pain syndrome in the world and its the most under studied also in the world. Like the others said every ones body is different and not everyone has the "Classic" signs and symptoms of RSD. yes the block is the only test that will tell a doc that its RSD. And probably some people can react to the block but in RSD pts that pain resolves and the color improves.??

You probably were caught early and very lucky if you did and you need to keep up with the blocks and meds. If you trust Dr Enty then go with your gut. Your sister isnt in your body living with the pain and the stuff you are going through. Its not like you are wanting these blocks nad meds to get attention... you are in PAIN!! If you are thinking about if you do or dont have RSD go for a second opinion and see what they say. Dont go to a neurologist. They just do the diagnositc tests like the EMG's. go see another pain doc or an ortho tht has seen and treated RSD patients before!

Dont let you sister get you upset.. stress can make the RSD worse!! Let us know how you are doing and if you need anything at all.. just yell!!

Good luck and hope you are feelign better`!!

:angel:
Bryn





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