[Freshh20]

Hey guys, I'm 17 years old and I have had RSD for 2 years. The on set was the first of 2 reconstruction surgeries on my ankle. I don't know how get through the day anymore. The pain has stopped me from doing all activities that I love to do. I can't even workout now. I wake up to pain and go to sleep in pain, and the terrifying thing is that my doctors can't help me, other than pain meds and acupuncture which only help for several hours. RSD is and has controlled my life and it seems to just keep on controlling me with no mercy.

Where are you, someone might be able to give you the ame of a nearby specialist

[Freshh20]

I live in Ohio, if you know anyone good that would be so helpful!!

[alaska49]

Your story sounds just like mine as I got my RSD from 3 reconstructive surgeries to my foot also. The third surgery it spread full body and within 3 months I was in wheelchair, couldnt use my hands, swallow, hold up my head. Its been 9 years now 6 with it full body and internal. I have seen over 200 doctors in 5 states the best treatment I found was the ketamine, not just the infusions but nassal spray and lossanges for home. I still have a long way to go in recovering but just dont give up there is some kind of help out there. Being in ohio I just warn you not to go to the pain program in cleveland clinic they treat every pain condition even back pain and headaches like its all made up and if you stop thinking of it, it will go away. I thank cleveland clinic was the worste hospital I found for helping RSD. Although stanton hicks was good.

Niki

[Freshh20]

Wow, I'm really sorry to hear that about your rsd, mine is no where as close as that. But thank you for the info on Cleveland Clinic, my mom wanted to send me there for the 2 week inpatient, and now I have even more reason to tel her it isn't a good idea

[tos8]

Ok i just saw your age, so you can still do the impaitent programs. My nuero wanted me to try that aswell but based on my age it was not going to work. However we talked to a dr at boston childrens who he recomended and she sounds like a great dr. I cannot remember her name. But she does inpaitent treatment.

Originally Posted by Freshh20

Wow, I'm really sorry to hear that about your rsd, mine is no where as close as that. But thank you for the info on Cleveland Clinic, my mom wanted to send me there for the 2 week inpatient, and now I have even more reason to tel her it isn't a good idea

[free2frog]

Originally Posted by Freshh20

Hey guys, I'm 17 years old and I have had RSD for 2 years. The on set was the first of 2 reconstruction surgeries on my ankle. I don't know how get through the day anymore. The pain has stopped me from doing all activities that I love to do. I can't even workout now. I wake up to pain and go to sleep in pain, and the terrifying thing is that my doctors can't help me, other than pain meds and acupuncture which only help for several hours. RSD is and has controlled my life and it seems to just keep on controlling me with no mercy.

Fresh sorry to hear this at such a young age it's gotta be tough as I'm sure you have read this is a very controlling condition I have giving up most of my favorite activities as the risk of further Injuries and pain level has forced me to to review the risk and reward of each. work outs can be modified For me working out was a combination of Military basic training/ football camp and weight room and while I can still do some weight training and some cardio I have had to learn what Yoga is. eating healthy who knew chicken came any way but fried and putting Bacon in plain yogurt is apparently frowned apoun.
(There is a reason why no male lives past age 65 in my family) As my wife has pointed out the one Benefit of me getting CRPS is it has forced me to look at things from a different prescriptive ( Other than Neanderthal Man) and try things like eating healthy, yogi, paying someone to change the oil my truck.
Now the hardest thing I have found is concentrating while in pain but when I do it is the closest thing I find to feeling normal and sometime I have to focus on the pain as away to make it appear to go away. The benefit is see for you having this at a young age is you haven't develop all the bad habits and life styles that I have (and other on here I'm sure) But each person deals with thing in there own way so what works for me or other may not work for you, but you can try them or modify them to help. It's only been 10 months for me but I learned quickly not to dwell on what I can't do anymore but to look at what i can do and all the new thing's to learn or modify to allow me to still enjoy them.

[ANTHONY JOHN]

Originally Posted by Freshh20

Hey guys, I'm 17 years old and I have had RSD for 2 years. The on set was the first of 2 reconstruction surgeries on my ankle. I don't know how get through the day anymore. The pain has stopped me from doing all activities that I love to do. I can't even workout now. I wake up to pain and go to sleep in pain, and the terrifying thing is that my doctors can't help me, other than pain meds and acupuncture which only help for several hours. RSD is and has controlled my life and it seems to just keep on controlling me with no mercy.

I know it's hard and I know you don't need another person saying stay positive but here it goes,stay positive.Two and a half years it's taken french doctors to diagnose me and at times I've been so down being a prisoner in my home.At 41yrs for the first 2yrs ill i'd given up but you need to fight back,you've a long life ahead and it's not all bad.Stay in there and take things slow,one-day at a time,ok!
RSD Anthony in France

[sshatz]

I live by Sacramento, my 20 yr old daughter has had RSD/CRPS for more than 3 years. We have tried numerous things. UCD got angry with us and sent us to the psych ward when Melanies pain was so bad, after they injected her back and ended up hitting her thigh and not the knee. Her knee pain rules our lives. Heat, Cold, touch, breeze, all things are painful. People who are rude and trip her at school, and people who think she's slow because of the drugs (Methodone, methocarbomal, norco, percocet) she has to take daily to just cope. I am unhappy with these medications as a whole, but I am less worried about addiction than i am having to go to the ER 2 times a week for pain. She's done every protocol the drs have given us including PT 4 times.

I want a miracle for all of us, but more than that I want a doctor that knows what to do about this disease. Mel thinks its spreading and hysteria is a daily occurrance. I want a new doctor for my daughter. Anyone who could help us , thank you. We need help.

[Orrwhat]

Have you looked into the Sacramento Pain Clinic? I have heard that they have good experience in CRPS patients.

Originally Posted by sshatz

I live by Sacramento, my 20 yr old daughter has had RSD/CRPS for more than 3 years. We have tried numerous things. UCD got angry with us and sent us to the psych ward when Melanies pain was so bad, after they injected her back and ended up hitting her thigh and not the knee. Her knee pain rules our lives. Heat, Cold, touch, breeze, all things are painful. People who are rude and trip her at school, and people who think she's slow because of the drugs (Methodone, methocarbomal, norco, percocet) she has to take daily to just cope. I am unhappy with these medications as a whole, but I am less worried about addiction than i am having to go to the ER 2 times a week for pain. She's done every protocol the drs have given us including PT 4 times.

I want a miracle for all of us, but more than that I want a doctor that knows what to do about this disease. Mel thinks its spreading and hysteria is a daily occurrance. I want a new doctor for my daughter. Anyone who could help us , thank you. We need help.