just recently i found this website and i'm so happy! i've had rsd for six years. and i'm sixteen years old. i orignally hurt my right ankle january of 2002 with an orthopedic thinking i had hurt my achilles tendon he operated on it even though all mri's showed that my achilles was fine. prior to the surgery i was casted for ten months. which we all know makes the rsd even worse. after surgery my suregon was amazed at how much pain i was in, and said he'd never seen anybody in so much pain. i went to a orthopedic at children's in san diego with them pretty much telling me it was in my head, even though the did diagnosis me with cprs. they never told us anything about it. soon after that i couldn't even get out of my wheelchair, i tried sympathtic blocks which only made me senstivity worse. i've been on cymbalta, lyrica,naurontin, and amitriptalyne. i now only take amitriptalyne and a few tylenol pm's at night. i found a clinic opening at boston's childrens hospital last summer, which me and my family went to for a total of seven weeks. it was horrible! 8 hours a day five days a week. three hours of pt. and hour of ot. phycology. and group physc. it was worse then anything, i never thought my pain could get worse after being there. even though my pain increased they got me out of my wheelchair. now after being home for a year i'm worse then ever. my pains all over my both legs and up my back. the worst i've ever had. i'm just looking for a little pick me up. and any suggestions. i'm so happy i finally found a place where i can talk to people that know exactly how i feel. its hard to find that.

Hi TMullen,

My daughter is 16 years old and has RSD. I joined neurotalks for support myself. Although I do not have any idea of how much pain you feel, I do know what it is doing to your life. What I can tell you as a mom of a 16 year old girl with RSD, is that you have to take every day one day at a time. I hope that you have a supportive family, mom or dad that can help you through this.

My daughter went through Ketamine infusions in July, I believe they have helped, I know that she is going to have to have boosters in the near future. Do you have someone to talk to, meaning a professional, someone to help you cope.

I see that you went to the Childrens Hospital in Boston, my daughter went to the Cleveland Clinic Childrens Pain Rehab program. Yes, as she refers to it as a word I can not use here, but, she has a different outlook about the outcome. yes it was awful and painful, but it did teach her coping techniques, there has to be something that you learned there that you can still use to help you cope. Have you tried pool therapy, I know the only thing that Dr. Kirkpatrick feels that all RSD patients should only be doing warm pool therapy, as not to re-injure or to injure yourself again. Where do you live? Are you going to school?

I am so sorry that you are where you are right now. I know that there are a lot of things that parents really don't understand, like one day of feeling so good, hanging out with friends and within an hour of being home, you have so much pain and are so tired. I do want to tell you that there are several teen boards that you may want to also try. I hope Ali12 (Alison) will see your post. She is 14 years old and must be close to 15 by now...She is very versed and a wonderful young lady. I think that she can relate to you and what you are going through. Try to find her under members and PM her ( send her a private message, she is wonderful, I do have to say, she has given me a better understanding from a teenagers perspective.

Keep your chin up sweety, and know that you do have a place to come and vent. But, remember I am a parent of a child just like you, your parents are a great place to start too, they really do understand, and if they don't we really want to. So talk to them and let them know how you feel, they are there for you too.

As Loretta says "I am sending you soft hugs!" And a hope for a better today, with less pain.

Much love and hugs ,

Sandy

Hi
I hope that you are feling better to day. Its not uncommon for you and the rest of us to need a pick me up day,,Im glad to hear that you have a supporting family and places to go to get theropy,,Have you tryed water theropy? I really wish you well,and I pray that the Lord will give you the mental,and physical relief ,that you need,,,

thank you so much for such a quick reply! thankfully i have a VERY supoortive family and a very loving boyfriend. they take such good care of me. i live in san diego, ca. no actually i haven't tried pool therapy the doctors in boston told me that would be the worst thing i could do, they believe that impact is the answer.but after trying that it went into my back. so right now i play the wii fit and walk a few minutes of the treadmill. we are thinking about keadimine ourselfs. i'm sure my mom would love to talk to you, and i'm sure my mom would to. what is your daughters rsd story? i am going in for the spinal cord stimualtor trial. did you guys try that? what's your daughters coping stratigies? i found that playing with play-doh helps keeps my mind off of the pain. i am on independet study so i do not go to school on a daily basis.
thank you again!
tell your daughter hello!

TM,
I'm so horrified to hear you story.
Although I've had this, rsd, and a few other choice things since '83, that doesn't matter other than that I understand.
Ask yourself some questions.
How are your doctors working for you?
(If they're not, find other's, who specialize in RSD. OK?)

How's they're treatments working?
(If not, check those 2nd opinions, from some serious RSD doctors)!
Please!

This RSD has the potential to spread full body, (which I have).

It certainly sounds to me like your doctors are "afraid" of your ailment.
Please, find someone who will take you, and your RSD, in hand, and treat it, correctly?

It is my humble opinion, that, it's not what you have going on now!

PM me, if you wish.
Click on my name,
AintSoBad
and hit Personal message....

I've had this since '83.
No small time.

I get upset when I see a younger person, not being treated by their doctors well.

Well,
Wether you choose to pm me or not, many other's here will jump in (weekends are slow), to help you!

I wish you the best.
Such a difficult thing to overcome for someone so young.
But, there are so many good people here, to learn from.
Don't jump into the "Pity Party's" which are here as well. I admit, I'm one for that too...

Stay on the Positive side!

As I said, TM, I look forward to speaking to you more.
Lots of folks who have had this demon for only a few years, are in their pity parties. And, even old ones like me, get into that Pity Party as well!
We need to stay away from that! Yet, we all go there occasional!

PM me, as you wish!

Pete
asb