Betsy, I am so sorry your daughter (and you) are going through this. We have several young folks here that she might be able to chat/vent with. ( I see that frogga has posted while I was writing this, lol.)

The symptoms you are describing are familiar to us ALL. rsd/crps sufferers have many symptoms that can come and go as the disease progresses. I am in my 14th year, and have gone through most all of them, lol. I am lucky, though, in that mine hasn't become full body.. only the limbs are affected.

"It's all in your head" in something many, if not all, of us hear throughout the years. It is frustrating as heck (can't use the word I really want to), but it's also something you must harden yourselves to. You haven't heard it for the last time.

As for getting treatment where you are, best of luck on that one! My honey Michael and I have moved, we call ourselves "medical refugees". About the best you could hope for in your area is your family dr./general practitioner caring enough to learn what he/she can. YOU will have primary responsibility, though... you will need to keep researching online, and downloading and printing helpful data to take to the dr. Luckily, you found us .. we'll be here in any way we can for you, and there are many links to many helpful websites to be found here.

RSD/CRPS is complicated to diagnose and treat... many dr.s don't find it to be "worth their time" to study up on. If you are in a small town far from a major medical center, then your dr. will most likely see few patients with it. I personally went from San Diego to Los Angeles to Lubbock Tx to Phoenix Az., chasing diagnoses and then treatment. Like you, finances made most options impossible.

Best of luck in your search for help for your daughter... she is very lucky to have a mom like you.

And this is for YOU I'm quite sure that YOUR needs for hugs and sympathy are not being met (we parents always put ourselves last). I can't even begin to imagine how frustrating, painful and hard it is to watch your child go through this. As much pain as I am in, I would accept twice as much if it meant one less child had to go through it.

The only "hope" I can give you is this: the few young folks who come in here, mainly Frogga and Unrouley1, are exceptional young people. I am pretty sure that having rsd/crps has been a major factor in their development, and they have grown into fine young women. Sometimes it takes major adversity for the young to become who they were destined to be.

it makes me so sad when i hear of another child with RSD. it makes me feel even worse when a desperate parent is pleading for help. there is NOTHING worse than feeling helpless when your child is suffering. i have a child with disabilities, but nothing like RSD.

you have found a good support group here. i live in ILL so i don't know anything about PA. However, there is a respite program available thru our Developmental Services Center. i don't know if that is nationwide or just something here. BUT, i receive so many hours of respite allowance per month for my son. i can pay a caregiver or they can send out one of theirs to care for my son for a few hours so i can get some relief. even if i stay in the house.

you can also try easter seals. i have never dealt with them personally, but many of my friends who have children with disabilities have told me to contact them for help.

also, there are companies that make anonymous donations for equipment - wheelchairs, ramps, machines, therapy stuff. you should check with like a hospital PR person or a therapy clinic. just don't be afraid to ask.

i am sorry i don't have any specific answers and i'm so sorry for all you are going thru. i will keep you in my prayers!

angie