RSD A Kid's Story Through Pain part 1

[lionkinglover86]

mine is still a 10

[lionkinglover86]

i know how it feels

[lionkinglover86]

did you go to the Clevelend Clinic

[adeleincanada]

I apologize; I will proof read next time.

[adeleincanada]

I lived with CRPS/ RSD/ RND & migraines for 14 years. I would like correspond with patients or family members of persons wishing to take their regain their lives to once again live pain free and healthy. Your video was wonderful to watch.

[runebagel]

Its not rare, i have it..

[atvchick09]

I went to Seattle and did this program and it helped with the sensitivity and a little with pain but than I got worse and Im trying this program again now and so far its only made my RSD worse! but im praying it helps at least a little!

[bornbetterLEGACY]

rsd or whatever you wanna call it, it isnt rare.. js.

[randomestperson121]

I have RSD as well, and Im 16 years old. I have no clue how you went through physical therapy. I cant even lightly touch my foot on anything. Let alone let someone barely touch it. I dont like comparing my pain to other RSD patients, but maybe my case is just a little worse than yours. IDK. Anyway, Im switching pain docs, and I'll probably end up having the epidural done. You should not have gone through the grueling pt. There are other options. Adults dont go through that, then why should kids?

[RSDfghtr]

@randomestperson121 I understand where you are coming from, but being RSD patient who is 17, had it since age 12, had nerve block which didn't work, PT is the best option, to retrain your brain. It hurts, it is HELL HELL HELL but so is not getting remission. If I'd gotten proper PT earlier I might not have RSD pain right now but my nervous system was so used to beiing in a bad pattern...it can't relearn... so I encourage other options, but especially for young people it is the best option.

[RSDfghtr]

@randomestperson121 I understand where you are coming from, but being RSD patient who is 17, had it since age 12, had nerve block which didn't work, PT is the best option, to retrain your brain. It hurts, it is HELL HELL HELL but so is not getting remission. If I'd gotten proper PT earlier I might not have RSD pain right now but my nervous system was so used to beiing in a bad pattern...it can't relearn... so I encourage other options, but especially for young people this IS the best option.

[pasqualinocarl]

thank you for your inspirational video! As a mother of a 9 yr old with RND, I really needed to hear your story! I shared the video with my son's teachers too. He will be entering the Cleveland Clinic children's pain center in 2 wks and my hope is that he does as well as you have! Best wishes always!

[Masuba]

i was just diagnosed with RND & im about to go to CHOP as well thanxs for posting this

[rodeopunkje87]

I just want to thank you for posting this video. I, too, have RSD and thanks to your video you became the inspiration to my recovery. My case was not as bad as yours but I was unable to put my foot down, let alone walk. I then saw your video and put myself through a similar program of my own. I am now happy to say that my RSD is almost completely in remission. I do get some pain still, but I'm at least able to walk now. Thank you so much, again!

[Pinkynose499]

I went through the same type of program. I love this video. we weren't allowed to film at mine though

[Pinkynose499]

I have it too.  how old were you when you were diagnosed?

[rodeopunkje87]

Wow, you have no idea how happy I am for you. Your parents must be so proud to have such an emotionally strong daughter. Congratulations on your victory. Good luck.

[jacklynsadventures]

i had rsd and the doctors told me the same thing.

[demon39063]

I can't imagine what that must have felt like. I've been told it's about as close to living hell as you can imagine.

Medical marijuana is supposed to be very good in helping manage the symptoms -- I wonder if it would have made it easier for you to treat it?

[rodeopunkje87]

@demon39063 I tried marijuana, as well, and yes, my pain level dropped significantly while I was high. Unfortunately, it was right back to normal when it wore off.

[1ladav]

This video is wonderful! My 16 year old daughter has suffered with RND/RSD for the past 4 years. She was daignosed by Dr Paul Rosen at Children's Hospital of Pittsburgh and went through the program at the Children's Institute of Pittsburgh. We feel lucky that it took only 8 months for a diagnosis. She is not totally pain free but is able to deal with the bad days.

[The009]

I have RSD in my right Leg, I have been doing pt and may other things and its still getting worse so I do know you pain, and I am here to say that You are strong for fighting this disorder.

[FlyinHyy]

makes me cry every time, therapy was so hard

[2mUch4yEw]

nice story..=0)

[boisestatediver]

Now years later I am pain free & a current medical student! Good job for getting through it!!

[boisestatediver]

I am an RND alum as well! I saw Dr. Sherry about 12 years ago when he was working at the Children's Hospital in Seattle. I was a gymnast and had a foot injury and the pain just wouldn't go away. I couldn't walk on it anymore and the doctors and my coaches all told me it was in my head. I was given cortisone shots, put in a cast, put in a boot and had crutches. I saw a number of doctors including a doctor in the NFL and he was the one to recommend me to go see Dr. Sherry.

[funface69]

San Juan Pain Center Info: 1+(787) 754-9799 / 1+(206) 497-2349 - 117 Eleonor Rosevelt St., Hato Rey, San Juan, Puerto Rico, 00918 a new method from Dr. Osvaldo Font it cured my RSD

[crazygirl4h]

i have this. You are so strong and i just want to thank you for putting up this vid. somethimes it feels like you are all alone as you must already know. So i just wanted to thank you it means alot i go to therapy but i have flair-ups it wont go away and you are rite it sucks...I have it in both of my legs, both of my arms, and in my back... so yea thank you for putting this up it means alot to me to know im not alone! Thanks again... <3

[mataz4o]

you are incredible. to fight through all that pain you really have a very powerful will and spirit. not many people would have been able to go trough what you did. congrats

[crippledrhavin313]

i had rsd in my right shoulder then arm then left shoulder, arm, neck, and back.... u all know what that feels like. I recived treatment at the pprc in boston. I wish anyone going through what i wet through there and before i got there best of luck finding treatment and hope. the pprc helped y and so many others. it will help you. also if your ever there ask them about me, just say the first boy they'l know

[Skullgrl]

Great video about your time with RND. I've had it for 2-4 yrs. now. For anyone else suffering with RND I suggest buying the book, Power Through Pain Living with Reflex Neurovascular Dystrophy By: Elizabeth Elster. If you can't find it like that try the ISBN: 978-0-595-43716-0

[009sportsbabe009]

im ,ost likley going to boston or seatle cuz nothings helped and its spread and got worse......are other people in the program too when you go are there others doing the therapy with you (patients with RSD)

[atvchick09]

i got RSD from a ATV accident in my left leg and then its spread to my ribs back and shoulders i cant breathe well and i cant even sit up...im most likley going to boston for treatment or maybe seattle

[atvchick09]

i was in a bad atv accident aug 14th and my ortho said it was posible i had rsd but we wouldnt know till all my broken bones were healded.......i didnt think much of it i didnt know what it was....but one fri evening the pain spread up to my hip and got worse and worse i was in the worst pain my dad amediatlly flew home from dallas when he relized something had to be done i went to the er and they said i was fine over 1 week ago i was diagnosed with rsd and im going to have a nerve block fri

[myheartsong3]

yepp been their RSD is trerriable !! but Jesus is faithful!! everyday i trust him to help me with this & i will be healed!!

[ellifyable]

I'm an "alum" of Dr. Sherry's program, so this video evoked painful but also emotionally charged joyful memories. My eyes teared when I saw the same familiar CHOP places, but when I watched the part about you arriving home- I lost it! I'm glad I revisited these memories cuz it reminds me of where I was and where I am now. I shared this with my boyfriend so he could better understand what I went through. Dr. Sherry is a true hero to not just me but to everyone whose lives he's touched!

[CRPSSerenity]

Your story is amazing.  I can only hope that at some point my CRPS will get to the point where I can run the stairs again. I miss playing soccer the most but a nice jog or hike would be liberating at this point. I love the song! How can I get a copy of it to listen to when I need some inspiration?

[adunkin2014]

i have RND/RSD and going to the Pittsburgh Childrens Instititute on monday...can any1 give some advice?

[sobored34]

im in that program right now it sucks...i did the bath tub thing too where you have to jump in and out of it...mines in my lower half of my body and neck...i cant wait till everything is over

[DarkSilverYoshi]

My cousin has RSD. Just diagnosed with it after like a month. He's 13, my age, and we've always talked on the phone about it, late into the night. He's described the pain, and its been heartbreaking to see this. Now I think I know what he's going through. I feel bad for him, and hope he can get through the physical therapy.

[BWayBayBayx28]

I'm in this video! (the one in the middle blowing kisses and the one on the left walking)

I was one of the RSD patients the same the last week that her and this makes me cry every time I see it. I couldn't walk at all because it was in both of my feet and ankles. I was there for 7 weeks. I can barely talk about my experiences there without crying, it's so painful. Yet, I love to talk about it and share my story. It did help me walk though, and the other patients help you get through it.

[dhall3301]

Wow! Thank you for the inspiration. I was diagnosed with RSD two years ago. My symptoms are progressing slowly, thankfully. But the cold purple arm just started and is UNBELIEVABLE! I want to see your doctor and hopefully he will help. Thank you so much, you have inspired me to keep going, and I can get better!

[jamielovezu17]

oh my god alyssa! its jamie, from the program. i cant believe i'm really watching your video. even though you had to go tthrough the program for a second time, you're still so much of my inspiration. youre amazing alyssa! i hope you're painfree now. i miss you!!!! get better soon

[Ursrut]

wow!this is an amazing video i have now had RSD for three years in my arm. I recieved treatment for it which has really helped. I know the story about them not beleving you. Same happend to me at first then they realised.

[duchessbritt90210]

i got into the program and will be going there within a couple months!!

[TCWstopmotion]

wow im sorry i have rsd too!!! i fucking hate it i was crutches for months and months!!!! but now i just have one crutch!!! use too be a cane but the winter makes it hurt more..

[WARRIORSfan4LIFE]

I guess bonded with him; his beard, and of course his magic and riddles. I never did get him.. He knows like every single riddle in existance!! Even the one about Samson!

[WARRIORSfan4LIFE]

episode in almost a year. My story is a little different from yours. It wasn't always constant, my pain came whenever I experienced any kind or dose of stress at all, physical or mental. I missed all but the first 2 months of 4th grade and until Feb of 5th in pain, and I don't remember much of it. When I saw Dr. Sherry in your video I was ecstatic! I would like to say hi and thank him for all that he did for me. I was more of an out patient but I still sort of,

[WARRIORSfan4LIFE]

I just HAVE to comment on this. I wa looking for an aritcle for school about RND and I found one, and I shrieked when I got to the end. Dr. Sherry! My old doctor! Then I went back to the google page and found a page with this video posted on it and I watched it. My case was different, and I was EXTREMELY fortunate that I just so happen to live in Philadelphia and had been to CHOP for my broken bones that also triggered my RND. (I broke my elbow twice by 10) I'm 14 now and I haven't had an

[erdal0]

rsd is to get chicks :S

[Flamingwindjutsu]

I've had crps, or rsd since april. i was lucky enough to have doctors find out what it was. i had a referal to sick kids in june and they confermed it. it really hasn't been easy on me. also it's all up to me to go through this inttense workout on my own. since i live in ontario, and we just can't get to philidalphia. what you did was really amazing! congragulations!

[RSDfghtr]

I haven't watched this in a while Alyssa and it makes me so emotional everytime. I love you!!!

[Way189]

i had RND. but dr sherry's program works. im all better

[duchessbritt90210]

hey can u give me the numba for dr. sherrys office and anymore information would be greatly apprieciated<3 thanx

[tbs53]

i start in 3 days <3333

[sillysstuff]

Good Luck, Stay Positive.

We saw Dr. Sherry, but did all of the physical therapy with a therapist 3 times a week and many hours each day on our own. She's 10 and just finished 5th grade.

It was hard, but she did it, and she's better!

[coastergirl99]

i love this video. i've had rnd since i was 8 and now i'm 14. I've been through this program twice and although it sucked, it helped my function. I still have soooo much pain and my doctors say it will get better. i hope so.

[TwiggyTB]

I would like to thank you for putting this up. It has given me hope. I have had RND for 5 years, and my drs finally realised it. I have it in my whole body, and am starting the treatment tomarrow. Thank you again,

E-

[AnnePurse]

Hope you get better soon... :D

[totallyturtles]

Oh I know what you mean when you said doctors didn't believe you! When I got my RSD at 11 our doctor sent me to this mental part of the hospitial! RSD sucks!

[superdupersumomrs]

I hate that docter!!! he wouldnt take me in because they did not have room! i went to dupont hospital when i had RSD and they saved my LIFE.

[tbs53]

wait ive been on this waiting list FOREVER.. dupont dose this too! omg i wanna go there im sick of chop been there 5498375409374 times can you send the info like reply to this thanks <3333

[rebafanatic16]

Every word you says peirces my heart...because it's so much like mine. I got RSD when I was nine...didn't get diagnosed until I was eleven. I looked up RSD just now because I just needed to remind myself I'm not alone. I'm seventeen. Right now I'm feeling pretty bad, because my pain is really bad right now. I've been crying for awhile now. The pain is just so overwhelming. I don't understand why you got better and I dont.

[rebafanatic16]

I've done the rigourous physical therapy and all that. Not sure if I've ever gotten to do the kind of program this was for you, but despite what doctors tell me, it doesn't go away, it doesn't get better. If anything it seems like over the years, it just gets worse. I want to believe that someday I will be able to feel better, but I've kind of given up hope.

[K1LLJ0Y]

dr sherry is cool.... but his therapists and other ppl are evil. That place is a living hell

[rachaelmorr]

OH my gosh i just decided to randomly search this tinking i would have no results! i just resved my first nerve block yeasterday im not alone it good to know do all the Childrens hospitals have a program like this?

[rsdangel]

i've had rsd for almost 6 years and have had 14 surgeries and more hospital stays than i care to remember! thanks so much for sharing your story! you are a beautiful young woman and you have no idea how much your story encouraged me!!

[rsdangel]

i've had rsd for almost 6 years and have had 14 surgeries and more hospital stays than i care to remember! thanks so much for sharing your story! you are a beautiful young woman and you have no idea how much your story encouraged me!!

[cutestanwoodchic]

I had this same thing when I was 10 on the same foot! It sucked! Now I have the adult version. yay me

[ERfan91]

i went through this exact program

[Twinchy]

So what program is this?

[ERfan91]

its Dr. Sherry's RND program at Childrens Hosptial in Philly

[ReineDeLaSeine14]

awesome!!!!

[profderien]

Thanks for making this video. I have had CRPS (originally type 2) since May 2002. It has now spread to all limbs (yippeeee!) and maybe part of my face. You're a brave person -- and... thanks again. Hang tough!

(my favorite thing thus far has been the physical therapist and her big bucket of dry rice -- for desensitization.)

[BWayBayBayx28]

Hi.. This is jessica.. Loveee it

[samgerke]

my wife has rsd go to askmara and see what helped her

[jeisea]

Wonderful!

[puppyeyes1996]

love it! love it! love it! i cant wait to see you again!!!!!!!!

(ahhha i wrote like the same thing with the other video)

~lily~