Girl vs. CRPS My battle against Complex Regional Pain Syndro

[TheNerdgirl55]

I've had crps for 4 years i gotthis last deceember at madera children hopital!1 nothing has currently helped me but i will be going to childrens hospital of L.A for pain manigment!! good luck to you sending prayers from other rsders/crpsers

[donnyfbaker]

MIMI you have got to be one of THE bravest 10 year olds on this planet dealing with this sydrom, i am so so so sorry that you had to go through this but so so so happy to see coming out on the other side keep going your doing good :)

[TMBareamazingxx]

Are you completely pain free now?

[ShotgunBarbie1]

I too have RSD/CRPS in my right leg. Suffered for 7 yrs. On an insane amount of methadone and benzo's for pain. Was not a candidate for spinal cord stimulator due to spasms. WAS HOPELESS! So glad this young woman found relief! I recently found relief too! Dr. Peter Pretzkop at BFC in CA. I am now drug free and my pain level has gone from a 7 to a mild 2! When I arrived in Nov., my leg was blue, cold, useless. Now it is pink, warm and working great! If you suffer, look him up. There is hope!

[torylinnangel]

does that really help (the pain implant?) I just got diagnosed with RSD/CRPS on the 25th of this month after living through 2 years of the pain. I'm crying for you right now! You give me so much hope that maybe I'll get baetter!

[MrsBbers]

Best Wishes to you Mimi's! I have RSD/CRPS for 17 years now. I'm so glad you've found a treatment that works well for you! I pray you continue to heal! You are an inspiration and hope for someday a cure for this terrible dystrophy!! God Bless!

[chronicallyjillian]

Mimi, I have RSD in my right hand, wrist and up to my elbow. I had lots of success with occupational therapy but for me it's probably more like your physical therapy. I just wanted to tell you that my OT could not PAY me to put my hand in an out of that cold and hot water the way you did! YUCK!

I recognized a lot of the stuff you were doing and I've done it too, or am still doing it. I hated desensitization but I'm so glad I did it now. I used to put my hand in a warmer that had bits of...

[chronicallyjillian]

churned up corn in it, and a fan to blow all of the corn bits around. It was horrendous. I love to read so I would try to distract myself by reading a magazine. I couldn't read a book because I couldn't remember the story after but a magazine was easier because secretly I just looked at the pictures until my 15 minutes were up.

Anyway I wanted to tell you that you have such poise, grace and patience... the way you handled your experiences was so amazing. I am 25 now and was 23 when I was dxed

[chronicallyjillian]

and I was not the most joyful person around. In fact some days I was actually a grinch. Most of the time I gritted my teeth and did what I had to do - sort of like when you were flexing your ankle against the resistance bands.

I wanted to comment and tell you that I am so happy I watched your video diary. It really made me hopeful. That is hard to do when I get down in the dumps, because I get really worried about finding a job (I got sick while studying for my master's degree so it's hard to

[chronicallyjillian]

work now), getting health insurance, moving back out of my parents' house, and stuff like that. I feel like I worry so much. But after I watched your video I remembered how lucky I am that like you I was able to get a great medical team who helped me fight back, and I'm much better now than I was two years ago. I hope the same is true for you - I'm crossing my fingers on my left hand and my toes.

I'm going to OT tomorrow (I still go at least once a week and probably always will) and I will go

[chronicallyjillian]

with a smile on my face because I will be thinking about you, and how brave you are.

In the battle of Girl vs. CRPS I think you've won. I know kids go into remission more easily than adults, and I hope you did. But even if you didn't, you didn't give up. And from watching you fight I bet you never even thought about giving up. You reminded me that I won't either.

Thank you for that. xxx

Jill

[robbiemac71]

Mimi, thank you for sharing this will us. My Son (13) was stung by a box jellyfish in March while we were on vacation in Jamaica. He has been fighting the same fight you have been. Good days and bad days are all part of it. He never ceases to amaze us with what he manages and how he keeps moving forwards. You remind me a lot of him, keep up the great work and let's hope a cure can found for soon! The Mac's in Halifax, Nova Scotia.

[Clubpm123]

Mimi, great job. Thank you for sharing this. My son (14 yrs old) was diagnosed with CRPS in March and we have done almost everything...We are off to Boston Children's Hopsital's for their pain rehab program. I was wondering how you are feeling, if you don't mind me asking. sharon

[Reno7721]

I have RSD in my left foot too...since 1999. I have developed widespread arthritis that my dr. says is related to RSD.

Excellent video Mimi...all the best to you!!

[mskatisunshine]

Mimi I wanted to thank you for your video, I am in school to become an Occupational Therapist and I am writing a report to teach my classmates about CRPS. Your video has been very helpful and I learned more about what I can do for someone with CRPS than I did in all the boring research articles I had to read!!! So thanks for teaching me and I will think happy thoughts that your pain goes away soon! All the best!

[TCluversNabob]

I NEVER comment on youtube... but this story just made me smile! I wish I could personally give her a hug and let her know how great she is doing! I am so proud of you! My father has RSD and it's hard to watch. I am so proud of you for having such hope and staying so happy. I know it can't be easy.. I will never know your pain... but know that you have fans that are cheering you on girl!

[atvchick09]

Im 15 and have had RSD for a few years. I now have it full body with organ involvement.

[wolfchick101]

you are doing so well ive had this for about a year now not as bad as yours but im so glad you are doing so well you have such great doctors. you are lucky ive been to 3 and they cant figure out what to do with me. they all have given up and I too I go to pt 5 times a week and I have no change im in pain all the time the different colors to uncontrollable twitching shaking in my foot and knee mine was from an fractures in the foot and the rsd spread spread up to my knee. you are an inspiration

[craftykristinascards]

thank you for sharing your story i was wondering what the numbing medication was because im still not being helped for my CRPS so i jsyt need to look for my own, thanks once again and i hope you are having more and more pain free days

[rnbwldys]

Rnbwldys

[rnbwldys]

Hi Mimi, all I wanted 2 say is You have a very strong spirit. I am 48 yrs. Old & have CRPS in all 4 limbs I myself just went through A program much like you did & I am walking again after a little over 1 1/2 years after receiving the right care I am glad you found the right people 2 help you early. You R a very strong young lady I am sure you must hear this a lot but you are an inspiration 2 us all keep up the good work thank U 4 sharing your journey with the world keep manage it never let it m

[12upgig18]

I'm 15 and have had crps for a year.

[davidsons4]

Lucile Packard Children's Hospital rocks!!! Our son didn't get better till he was admitted there and treated by the experts who have had years of experience dealing with this. Good luck and hope you continue to manage CRPS and not let it manage you.

[markandmelissa]

Wow I have no words to describe what I am feeling watching this video. I am 42 years old, have had CRPS for 8 years now in my left knee and foot and I didn't handle therapy half as well as you did! Way to go girl, I hope God Blesses you with less pain!!

Connie,

Ontario Canada!!

[fmary8]

you.are.awesome. I wish I had your vitality and your strenght! way to go

[papayasaladlover]

Hi Mimi - I am so glad to see you work out and do so well. i am sure you are going to be back and do all the things that you were doing before this whole thing happened. It is good to see you recovering so well. Your angels are watching over you and taking care.

Love

Mrs. Sharkey

[Hoppepartyof5]

Can't thank you enough, Suzanne for taking care of me. Thank the other nurses too.

[Worm1Kathy]

Hi Mimi - I am so proud of you for all your work! You have been very busy with your video diarly and it is great! Now I know more about CRPS!. You don't know me but your mom does! Hugs from Cody, Wyoming and get completely well SOON!

Kathy Wormald

[suz259]

Mimi - it was such a pleasure to look after you in the hospital and see your progress in person as well as through your video diary here. I think you've done a great job showcasing your time in the hospital and the journey to recovery. Keep up the good work!

-Suzanne

[cris8472]

Mimi: You are one of the most AMAZING people I have ever met! I gasped when I saw you wearing your new "heavy" shoes, and my jaw dropped when I saw you not only walking, but stomping on that missile thing. You are truly a gift from God to all those around you, and you give me hope for the future! I am truly blessed to call you and your whole family my friends.

-Chris