welcome to our group

I have this from a slight different perspective.I got it when I was 10 years old or what were tjhe beiging  of and really bad rsd at 14.You lose everything that matters when this happens to you and you want to take control over something.14 year later I still have issue when doc insist on they things without dicussing it. orders don't work.If you haven't done so I think that talking over her condition and treatment just you and her may help the attitude.I

I know it killing you but try to give her some choices like stop taking certain meds.When I did the meds they made me , sick and I couldn't be me at school anymore and it killed me a piece at a  time.I know you don't understand but try to think of how you'd feel if you lost you happyness and felt that you body no longer belonged to you and then had people telling you what was best when they didn't know how you felt.

I know you are trying and it obvious you care very much for her but you have to try and see where she coming from to help her.Talk to her take her out for a couple hours and not mention it she may be acting this way because she might think this is the only thing you want to talk to her about and not the rest of her regardless of wheather or not it is true

my email is in the group list should you or your daughter ever need it let me know either email or drop me a line here

.There are other young member on these boards that might share there veiws with you.I just wanted you to think that she not bbeing diffcult with cause .She is trying to battle this anyway she can just like you are

and thank you for coming here trying to help her

mirage

take care

 

I am so sorry to hear that....I am 22 and was finally diagnosed with rsd in november of 2007 but i have been dealing with it and fighting the doctors on it since september of 2006....I can't say what exactly your daughter is going through but i can tell you what i go through with my mom and of how it affects me and my actions.....The longer that i had and have to put up with it and the more and more things that the doctors try and the treatment fails the more negative everything thing becomes...You no longer care what you look like.....You no longer what to get out and do anything....You no longer get your hopes up.....You just plan give up......What I think you should try to do with her is to sit her down and talk as if she is an adult and always tell yourself that you are only in a rut and things will get better.....Have you thought about a plus going along with a minus, the good after the bad?......If you haven't you might want to try.....Go somewhere speacial or do something speacial after a doc appt or a little bit before....for examle; you could take her to the park on a warm day and just have a mom and daughter convo......Find out what she likes it and if there is a way take them to do something related to it.....

I really hope that this helps.

With love and hugs,

blueyez

My son had a lot of problems with Cymbalta.  He started needing a night light (he was 26 at the time) and being afraid of going to the bathroom in the night.  The psychiatrist who prescribed the Cymbalta had the brilliant idea of putting him on an anti-psychotic to deal with the side effects.  Luckily, a nutritionist told us that his symptoms were a side effect of the Cymbalta and that we should stop the Cymbalta NOT add another drug.  I looked on the web and found a site where people wrote about their problems with terminating Cymbalta - SCARY.  (I googled: cymbalta side effects).  You are never told this when they first put you on it.  When my son was off cymbalta he no loinger needed the seroquel and he was put on a different anti-depressant.  Thank God for nutitionists!  So, if your daughter does not want to take her Cymbalta, it may be bc she is having a bad reaction to it.  There are plenty of other medications to try in its place.

ALSO, I would be VERY suspicious of anyone who says: "he has successfully treated ~200 kids with RSD, and if she would just do what he says, he could treat her."  One thing about this disease is that each patient is COMPLETELY different.   And what works for one person does NOT work for the next.  If he thinks he knows the solution to RSD then he knows NOTHING and he is arrogant (in my opinion).  If he really has helped/cured 200 RSD patients, please give us all his name and number - he could help us all!  AND he should be getting a nobel prize soon!  Please listen to your daughter - if the Cymbalta makes her feel sick then try another medication.  I can assure you that she knows more about RSD than the doctor.  She needs to be supported in finding what treatment works for her not to be told that she must do what some doctor (who has never had RSD) thinks should be good for her.

Sorry to get so worked up.  I have been to many doctors with my son and most know very little about RSD and the best admit it and they are the ones who achieve the most.  Linda