why don't they believe??? - Reflex Sympathetic Dystrophy Message Board

pattihabs · 07-15-2007, 09:44 AM

i am soooo sick and tired of people not understanding rsd is real. my sisnlaw who has a masters in social work really ****ed me off. we were talking about rsd and my pain and she said she read on the web that it is not proven that it exists. i was sooo ****ed. i said ok , i just woke up in the hospital with this god awful pain from out of anasesia(can't spell) and made this all up. this thing that i never heard of before...went to pt where a pt told me what i had then went to a neurologist who told me what i had, then, finally to a pm who told me what i had.. yeah, i'm just making it up. Then my momnlaw. who grabed my hand and i freaked said oh, you still have that pain?? i only told her 1000 times. she said, oh when will it go away?? i told her 1000 times it's for life and may become progressively worse. i won my ss case and they are like don't understand why i can't work. i said ss considers rsd a severe, disabeling desease. why can't they get it??? just cause i don't LOOK disabled or i try to hide my pain dosen't mean it's not there... i wish they could have it for 1 day so maybe they would understand. boy does that **** me off...

oh well had to vent...lol, patti

jaxobean · 07-15-2007, 12:48 PM

First of all I think one of the rules on this board should be that you are not allowed to say sorry. Screw them both. In the beginning before I got my massive swelling I went through the same thing so do not think I am talking from my butt. Who cares. Let it go and walk away. For as much as it bothers you let them be ignorant and if they cannot understand why do you want them near you anyway? I am not just saying that either I have litterally walked away from family who was like that. You are going through enough and shame on your la de da ignorant socially retarded sisnlaw. I would not have her helping me and where is she getting her info. Ask her. Say can you please show me that so I can show all these docs. that are telling me I have it? What does your husband say? The only people that really understand are the people that are around it 24-7. How were they before you got this? My in laws are great my minlaw has taken me to doc appoinjtments and has been involved so she understands even when I lie to her and tell her things are better than they are. My broinlaw looked up something he is a firefighter/paramedic and found nothind about it spreading to your organs. I have heard it can and heard fram people who have it in their organs so my husband said you will not find anything like that if you want to find out th etruth about rsd go on a site where it is people who have the disease and they are all sharing their experience and helping each other and then you will get the truth- he truly is the man...Don't sweat the small stuff and god does not sleep. If they do not have the capacity to feel for others than sorry about them. Keep it short and discuss nothing with them. You need to surround your self with people that will help you, support you, believe you, and lift you... f em if they can't take a joke and keep your head up!!!

NIKKI

dee18 · 07-15-2007, 03:16 PM

HI PATTI & NIKKI
New here--Reading your post-Isn't this a bunch of crap I'm so sick of
people thinking it is in your head including DR'S-my own Mother thought
this for sev. years You know I don't even know what my husband thinks he
knows what is going on but little communication--yes this can effect your
organs there is a lot of good sites on how this can and does spread to
organs--if the DR'S were up on this it would not get this far for a lot of
us-as you know after a few months there Isn't much they can do I've been
told and have read. It is so hard to even be around people when you are
in this DAMN pain all the time--who feels like making small talk. Know one
knows how much pain we have to deal with (burning ) also every one says
to me how can you be burning when you are cold--I just have to work on it
I tell them, I have to keep an elec. blanket stay warm every day.The hell with
them all I'm so mad today just remembering the days when I could wear
clothes the sensitivity pain stays at a 7 or 9 every day of my life. Fed up
with it all don't know how much longer I can hold on. Have lost all hope.
THANKS FOR LESSONING
DEE

jaxobean · 07-15-2007, 04:47 PM

Dee,
Well if it means anything at all I believe you. How long have you had your rsd, and where is it? Do you have an scs? Don't give up and you can hold on as long as you are breathing! We ALL can! I know some times it does not feel like that but we are all tough. Anyone who deals with this and all the other stuff which can sometimes be just as bad, if not worse than the disease sometimes.Do not give up and if we cared what people thought we all would have thrown in the towel along time ago. You sound so depressed Dee and I just hope it is a bad day. My husband was over my shoulder reading your post and was like that does not sound too good you really should ask her if she has tried the scs and see what she has tried. I hope things get better and when you feel like this come here and vent and when you are happy come here and vent ok. Welcome. I am going to look up the info. about the organs not to scare myself but I just wany to know it started to spread so who know it could be a possibility so I want to educate myself. Too bad we cannot share info. sites. Thank you Dee and I really hope things get better and I hope I do not sound so nosey but I am just a helper...Nikki