Start with the bottom post by AR19335 and the rest of the story follows in the next post. Good luck to anyone else who has RSD. Never give up! Youll make it <3
When the doctors finally said i had RSD and CRPS i started intensive therapy imediatelly. my therapy schedual consisted of auqa (or water) therapy along with multiple hours of regular therapy a day...each day.Today I still going to therapy 3 times a week but i can actually walk now and go up stairs even though it hurts. I still have pain all the time but it is better! in the past few months i have started to reintroduce myself to some volleyball again!
You are doing such a great thing putting your story out there! I am 16 and i have RSD too! It started when i was 12 and had a knee injury playing volleyball.I tried cortizone shots and therapy but nothing worked.i had surgury at chop but things never got better.In the beginning i had very cold temp and color change but after the surgery it was not as bad. untill 2 years ago it got the worst ever. I was in so much pain i was missing so much school.
My friend has had RSD for 8 years, I met her in the adolescent psych ward because the doctors have decided it's all in her head. I'm glad you got better, and I hope someday she will walk again too and live a relatively pain-free life again.
Thanks for raising awareness and sharing your journey.
momtat92---my daughter went through the program at CI of Pgh 4 years ago. She is not 100% but it was definitely worth it! And once your daughter completes it maybe we will see you at the yearly RND/RSD picnics they have at Schenley Park.
@Pinkynose499 The RND/RSD picnics are usually in September the one for 2010 was early October. Schenley Park is in Pittsburgh, PA behind the Carnegie Museum of History. I hope that you are finding relief from your pain. RND is rough on everyone! As a Mom of an RND sufferer I always wish there was something I could do to take the pain away!
@Pinkynose499 That would be great if you could make it to a picnic. I think it really helps to actually meet others who know what you are going thru. My daughter got RND at the age of 12 and was diagnosed at 13. She will be 17 next month and once in awhile she still has some pretty bad pain episodes. You can find her on youtube she is horseygal235 and she is always looking for more friends!
@1ladav wow. It started when I was 10. I was diagnosed at 11. but the doctors said that I may have had it since I was much younger. Because they said I always had growing pains, but now they said that those "growing pains'' from 1st, 2nd 3rd grade may have been RND. they also said that it may have been caused by my Scoliosis that I got when I was 7 or 8.
I'm glad I found your video... my 14 year old daughter is suffering from RND in her knee and is just starting her treatment through The Childrens' Institute in Pittsburgh PA. I'm going to show her your videos - both of them when she gets home from school this afternoon... she really needs to see that she can be healed.
i have several condictions wich has left me wheelchair bound one of them is RSD which took over my left arm. your inspireationable i am going t get my arm back :)
i ve been in Donald Rhodes clinic and all of this its true this STS treatment needs to be publis the world needs to know cause is the closest thing to a cure
Omg you are my hero. After watching this , I know that its possible to make it through. I have been diagnosed with RND a month or 2 ago. I go to physical therapy once a week, but its getting worse. Sometimes I cant even get up for PT. I am sooo scared. This video gives me more faith.
thank you so much for making this video i was in a bad atv accident and i was just diagnosed with this and now after watching this i have hope i will be able to go race my atv again
thank you for posting this video without it i would probably still be suffering from rsd but i went to doctor sherrysprogram and got better. one question did he make u dance too?
i love this viedo! i also hav rsd in my foot/ankle and i went to Children's hospital in Boston and they have a program just like the one you went to in PA and I was in the program for 3 weeks and now 4 mths after i finished I can run again! its spreading to my left ankle/foot but im not giving up. i am planing to play softball and be the catcher in the spring. i wont let anything stop me just like you never did!
and I am trying to use my writing to help me a) ignore the pain and b) spread the word about pain syndroms like this.
I would just like to thank you again for posting this video and spreading the word. =D And that song is amazing! I can just sing, my lyrics are no good. haha!
program and was pretty much rid with it, with the exception of my hands, which has never gotten better. Of course, I got really sick in January of this year and then the pain returned, and my asthma and other breathing problems have been acting up, so now the pain has returned. They think I'll have to return to the Occupational Therepy, Physical Therepy and Aqua therepy again, but we don't know. Anyways, my escaping was through my writing, which I found from having gone through the RND program
Hi! I just wanted to thank you for posting this video up here. I have RND- total body RND of course- and am fighting it once again. I got it when I was around 11 and wasn't diagnosed until I was 12, but for months I had doctors looking at me and telling me I was crazy, and many told me that they didn't know what was wrong with me, but there was something terribly wrong with me. Finally they sent me to childrens in Seattle and we got it figure out. I went through the 5 hours a day 5 days a week
Im glad you kicked RSD butt!! I have it in my Knee and it hurts horribly. Its such a inspiration to know you have beat this disease. Thank you for the post.
i'm 15, and am currently living with RSD in my right ankle, i got it from an ankle sprain in cheerleading, and I just want to say thankyou for posting this video.
Great video!
Buth how are you doing now 4 years later?
I Hope youre still doing fine?
teabijker 3 weeks ago
this is what u call HOPE & FAITH. a beautiful ending... may god bless
Ojozv3rd3z 2 months ago
I Have RSD and I really wanna thank you for this video! It gives me hope.. So Thankyou!
sannluna11 9 months ago
Start with the bottom post by AR19335 and the rest of the story follows in the next post. Good luck to anyone else who has RSD. Never give up! Youll make it <3
ar19335 1 year ago
When the doctors finally said i had RSD and CRPS i started intensive therapy imediatelly. my therapy schedual consisted of auqa (or water) therapy along with multiple hours of regular therapy a day...each day.Today I still going to therapy 3 times a week but i can actually walk now and go up stairs even though it hurts. I still have pain all the time but it is better! in the past few months i have started to reintroduce myself to some volleyball again!
ar19335 1 year ago
You are doing such a great thing putting your story out there! I am 16 and i have RSD too! It started when i was 12 and had a knee injury playing volleyball.I tried cortizone shots and therapy but nothing worked.i had surgury at chop but things never got better.In the beginning i had very cold temp and color change but after the surgery it was not as bad. untill 2 years ago it got the worst ever. I was in so much pain i was missing so much school.
ar19335 1 year ago
You have a beautiful voice. :)
My friend has had RSD for 8 years, I met her in the adolescent psych ward because the doctors have decided it's all in her head. I'm glad you got better, and I hope someday she will walk again too and live a relatively pain-free life again.
Thanks for raising awareness and sharing your journey.
deuxfanatiques 1 year ago
momtat92---my daughter went through the program at CI of Pgh 4 years ago. She is not 100% but it was definitely worth it! And once your daughter completes it maybe we will see you at the yearly RND/RSD picnics they have at Schenley Park.
1ladav 1 year ago
@1ladav when are those? and were is Schenley park? message me. I have RND too
Pinkynose499 1 year ago
@Pinkynose499 The RND/RSD picnics are usually in September the one for 2010 was early October. Schenley Park is in Pittsburgh, PA behind the Carnegie Museum of History. I hope that you are finding relief from your pain. RND is rough on everyone! As a Mom of an RND sufferer I always wish there was something I could do to take the pain away!
1ladav 1 year ago
@1ladav wow. that's a little while aways from where I live. I'll ask my parents if they can bring me one time. thanks <3
Pinkynose499 1 year ago
@Pinkynose499 That would be great if you could make it to a picnic. I think it really helps to actually meet others who know what you are going thru. My daughter got RND at the age of 12 and was diagnosed at 13. She will be 17 next month and once in awhile she still has some pretty bad pain episodes. You can find her on youtube she is horseygal235 and she is always looking for more friends!
1ladav 1 year ago
@1ladav wow. It started when I was 10. I was diagnosed at 11. but the doctors said that I may have had it since I was much younger. Because they said I always had growing pains, but now they said that those "growing pains'' from 1st, 2nd 3rd grade may have been RND. they also said that it may have been caused by my Scoliosis that I got when I was 7 or 8.
Pinkynose499 1 year ago
I'm glad I found your video... my 14 year old daughter is suffering from RND in her knee and is just starting her treatment through The Childrens' Institute in Pittsburgh PA. I'm going to show her your videos - both of them when she gets home from school this afternoon... she really needs to see that she can be healed.
momtat92 1 year ago
My daughter went from wheelchair to walker,,and swam her way out of a walker. a few months of remission, but RSD returned.
We remain hopeful, and appreciate your video.
I can do all things through Christ who strengthens me~
His love abound~
mamahenrobin 1 year ago
please in facebook Join group : Puerto Rico Challenge RSD/CRPS and in you tube see yazmin michelle channel
yazminmichelle 1 year ago
i have several condictions wich has left me wheelchair bound one of them is RSD which took over my left arm. your inspireationable i am going t get my arm back :)
TheCrazykay2 1 year ago
This has been flagged as spam show
i ve been in Donald Rhodes clinic and all of this its true this STS treatment needs to be publis the world needs to know cause is the closest thing to a cure
funface69 2 years ago
Omg you are my hero. After watching this , I know that its possible to make it through. I have been diagnosed with RND a month or 2 ago. I go to physical therapy once a week, but its getting worse. Sometimes I cant even get up for PT. I am sooo scared. This video gives me more faith.
jennifertbby 2 years ago
thank you so much for making this video i was in a bad atv accident and i was just diagnosed with this and now after watching this i have hope i will be able to go race my atv again
atvchick09 2 years ago
Thank you for making this video! You are an inspiration. Stay strong!
:-)
papisces 2 years ago
thank you for posting this video without it i would probably still be suffering from rsd but i went to doctor sherrysprogram and got better. one question did he make u dance too?
duchessbritt90210 2 years ago
love it! I'm possibly going to a similar rehab place you went to for RSD in my whole body
FlyinHyy 2 years ago
i love this viedo! i also hav rsd in my foot/ankle and i went to Children's hospital in Boston and they have a program just like the one you went to in PA and I was in the program for 3 weeks and now 4 mths after i finished I can run again! its spreading to my left ankle/foot but im not giving up. i am planing to play softball and be the catcher in the spring. i wont let anything stop me just like you never did!
PINKelvis43 3 years ago
I love the song!! And I love your video!!
XoXoOTHFan23OxOx2 3 years ago
RND was the hardest part of my life. Everyday i did the CHOP program 8 hours a day 5 days a week. Its a living hell but u can do it!!!
Way189 3 years ago
and I am trying to use my writing to help me a) ignore the pain and b) spread the word about pain syndroms like this.
I would just like to thank you again for posting this video and spreading the word. =D And that song is amazing! I can just sing, my lyrics are no good. haha!
Anyways, thanks again!
Keep up the good work!
Marissa
Justg0ttasing 3 years ago
program and was pretty much rid with it, with the exception of my hands, which has never gotten better. Of course, I got really sick in January of this year and then the pain returned, and my asthma and other breathing problems have been acting up, so now the pain has returned. They think I'll have to return to the Occupational Therepy, Physical Therepy and Aqua therepy again, but we don't know. Anyways, my escaping was through my writing, which I found from having gone through the RND program
Justg0ttasing 3 years ago
Hi! I just wanted to thank you for posting this video up here. I have RND- total body RND of course- and am fighting it once again. I got it when I was around 11 and wasn't diagnosed until I was 12, but for months I had doctors looking at me and telling me I was crazy, and many told me that they didn't know what was wrong with me, but there was something terribly wrong with me. Finally they sent me to childrens in Seattle and we got it figure out. I went through the 5 hours a day 5 days a week
Justg0ttasing 3 years ago
Im glad you kicked RSD butt!! I have it in my Knee and it hurts horribly. Its such a inspiration to know you have beat this disease. Thank you for the post.
jodom1979 4 years ago
i'm 15, and am currently living with RSD in my right ankle, i got it from an ankle sprain in cheerleading, and I just want to say thankyou for posting this video.
fallinapart27 4 years ago
good for you!
profderien 4 years ago
love the song! i cant wait to see you and sarah again!
~lily~
puppyeyes1996 4 years ago