Hi bram, thanks for the reply. It is interesting some of the similarities we share, and it COULD lead to a cure in the long run .
Anyway, I hope your day is going well, and your pain is manageable.

Hi Blake,
Hang in there. My daughter is 14 and has had this for 2 years. I know what you mean about your friends not understanding it. It's just so outside the realm of experience of a typical teenager, they cannot even begin to fathom it. I know that this illness is lonely for everyone, but I think being a teen is just an extra burden, when your friends are so central to your life and they just don't get it.

My daughter had a similar experience with a multi-week pain rehab program. Things got worse at first, but now, 2 years later, her pain is just starting to go down a bit. None of the medicines helped her, but I think not giving up and staying active has. Good luck!

BraveGirl's mom

Hi Blake and Welcome.
I'm sorry you have rsd. I've had it for almost three years now and it's spread from from my right wrist to my entire right side and both feet. I also got fibromyalgia a few years after the rsd. I initally had both burning, sensitivity and a deep aching pain. Then after about a year it turned into more of a constant internal deep aching electrical pain throughout my whole body. I do have burning on occasion in both my feet. I take meds and try to walk a little each day and hope to do water aerobics for arthritic people next year again. I see a neurologist, pain management dr and psychiatrist for pain, depression and anxiety. It helps to have a good group of drs who understand rsd.
It also helps to have a good group of friends who are going through what you are. This is a great group of people who understand and I've learned alot from them. I hope you know that you're not alone and that if you ever need a friend or someone to talk to, I'm here to listen. The other people on this forum are also here to listen too, as well as providing support and kindness. Take care and try to take it a day at a time. Don't loose hope of going into remission. My thoughts an prayers are with you. Take care.
From your friend, Renee.

Hello brave girl and renee. I am so sorry that your daughter has this condition, brave girl. I know that I'm one to deal with these things decently well, even though on the inside I'm screaming at the top of my lungs. I understand where you're coming from as a mom, because my mom doesn't deal with me very well because of how high-maitenance I am. It's not that she doesn't care, it's that she doesn't know what to do when I'm at my worst. I wish you best of luck with your daughter, and I'm glad her pain level has decreased a bit. I will pray for her. Renee, thanks for the response. Again, it's nice to know that there are others going through this. I really thank you for support, and if you ever need someone to talk to about your pain, or need help with anything, I have a lot of experience and could probably resolve your problem. Just post on this forum and I'll respond with a caring answer .

As I read these post,one thing truly comes to mind..We all care..Rsd is not easy to deal with.I know I am working towards 4 years in Jan..I was hoping to feel better by now.I was a person who walked twice a day with my dog,now I can barely walk.I was using crutches ,and wheelchair in the beginning all the time.So I am greatful that I can walk without ,short areas,but if I feel unstable I use a cane or wheelchair..I am thinking about getting adult walker with a seat.So I can take a brake...I also have a electric scooter,that I use a lot while camping.I just hate the thought of depending on a walker..Makes me feel old..I am 48,and feel younger on most days ,except when I get a gotcha moment.. I have had a lot of meds. too.either they bother my stomach or reaction..I have not found one yet that truly helps.Every day there is pain.I cannot remember the last time I was pain free..That is really scarery. But I never give up..Waiting for that someday..
Do not ever forget we are here for one another.I know I hate it when someone else gets this,but I feel worse knowing it is a child..or young teen..
You will learn a lot here.RSD issues,,like muscle jerks and headaches,sweats,chills,burning,pain,tired,sad,alo ne...but then again we have each another here.. Glad you joined..Best wishes

Hi & Welcome but rather you did not have need to be here.

Everything I've read is that there is no "cure" for this, there isn't even a definate plan of treatment. such as, Kidney disorders have dialysis, Crohn's disease has Humira, Cancer treatments are Chemo and radiation and all sorts of definative testing.
Everything for this is pretty much an individualized stab in the dark. Most drugs prescribed are "off label" originally made for another disorder. Treatments are the same too.
However, it's pretty consistent that youth is on your side. It's far more prevalent that at least remission is FAR MORE likely if you're very young. Usually under age 25 or so. My P.M. (She's awesome) has CRPS & is in remission but was I think she was 17 when they got her into remission & she has stayed there!!! Thank heavens because that got her thru university and Med. school and now a great Pain Mgt. Dr.
Keep us posted on your happenings.