Girl vs. CRPS My battle against Complex Regional Pain Syndro

Created on November 9, 2010 using FlipShare.

Category:

People & Blogs

Tags:

• complex
• regional
• pain
• syndrome
• in
• children
• with
• reflex
• sympathetic
• dystrophy
• rsd
• crps
• lucile
• packard
• children's
• hospital
• girl
• vs.
• CRPS

[Hoppepartyof5]

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

[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]

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

[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]

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]

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]

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...