I need help. #CRPS
 

Okay, I need advice.

I'm 14 going on 15 in a couple weeks and my doctors are sort of stumped on what to do for me because of my age. They don't typically see this stuff with my young age, therefore they have no clue of really what to do.

That's where you lovely people come in!

I need help. I need ideas of how to cope with the pain I have. Anything would help me. I just need something. Anything. And I'd definitely appreciate any advice from anyone.

I thank you in advance for your time and comments. (:

Sorry to hear that you are going through this at your age but know that you are not alone. My friend's, friend's daughter has this and is about your age. What has helped is treatment at a Children's Hospital that is knowledgeable in CRPS. She has done aqua therapy for 1.5 yrs. and now is able to return to her dancing.

With that said there are resources for someone your age-

The Reflex Sympathetic Dystrophy Syndrome' website has a page that lists 6 resources for youth and their parents (scroll down on this page) http://www.rsds.org/2/related_sites/index.html

Of note, see that there is a RSD/CRPS Awareness in Teens Facebook page. I would think you could link to other teens going through what you are.

I think you should contact Allison on this site...she was youg too.

I agree with this 100%. RSD in children/teens has the best chances at remission so getting into a hospital program that specializes in treating it is likely your best shot. Your doctors may have good intentions but if they are stumped then you need to move on. Reseach some of the programs out there and hopefully you will be able to find one that your current doctors can refer you to.

Hopefully some others with more experience pop in here to answer your question because I don't have personal experience with it and can't make any specific recommendations. But I want to say that I am sorry to hear what you are going through. It was bad enough getting this at 25...I can't imagine having it at 14. Take care and always feel free to ask any questions here or even just to vent. We all understand and know what you are going through.

Thank you for replying. It means soooo much to have help.

I was diagnosed when I was 11. It's been pretty rough. But I'm pushing through! And I'm sorry for your having to have this awful disease(?). It's a pain in the butt. Like literally. But it's in my entire right leg. May I ask where your's is?

And Thank You @catra121 for the support and it would be lovely to talk to you sometime.
And @reluctant@thetable, thank you so much for that website. It looks like it could be extremely helpful. &may I ask what hospital she went to for help?

Thank you guys for replying, it means a lot!

And really, I was diagnosed at 11, about a year after my incident. But yes, it is hard. But I'm sure having it at 25 is still just as painful. May I ask where you have it? It's in my entire right leg.

Of course you can ask what hospital she went to. We're all here to help one another. She went to Children's Hospital of Wisconsin. I can ask my friend if she would like to correspond with you if that would help you.

I have it in my right foot and it's heading up my right leg. I also suspect that it might be moving to my left foot as well. They caught my crps quite quickly and told me I was lucky. I didn't feel so lucky.

Today is not a great day for me. I consider myself a human barometer- much more accurate than the weatherman. Today there are thunderstorms in the area and my leg is discolored up to my knee. My foot is bright red and my muscles are cramping. I'm 52 yrs. No one expects this at ANY age!

Thank You for telling me! I live in Virginia, but there's probably a hospital like it somewhere around here.

And I agree completely as I have the same suspicions. And my doctors didn't even figure it out, my old pool therapist did!

Awh I'm sorry, I truly honestly know how you feel! Don't you hate it when bad weather's coming? I do. With my foot, it turns blotchy, like blue and purple and ghost white. It gets tingly and then cramps. Man, doesn't it suck? I'm sorry you have to deal with it! I hope it gets better for you!

I hope it gets better for you and everyone else on this board too. Check out the Childrens Hospitals in your area and see if they have a pain treatment center. I immediately crossed a dr. off my list when his nurse had never heard of Ketamine. There is help out there- you or your parents may just have to do a little searching.

BTW, as an adolescent you have a very good chance for remission. If I recall correctly, the changing hormones in adolescents bodies are considered to play a role in adolescents going into remission quicker than adults would.

Continued wishes for a speedy remission.