I first got diagnosed with crps in 2010 when I was ten years old. I have severe crps, now I'm 14 and the disease has spread up my right arm to the shoulder (I am right handed). Anyway.. I know most people have a hard time believing they aren't the only ones out there with this disease but there are a lot of people who know how hard it is living with this constantly and knowing that there is no true cure. There are people to talk to and that are happy to help so don't make the name "suicide disease" become more popular than chronic regional pain syndrome.

P.S. if you are active and not thinking about the pain it doesn't hurt as bad as if your setting somewhere reading this crying.

13 Replies

  • A very encouraging message.

  • I pass on Calceolarias sentiments. Sending love and hugs

  • Sending you huge hugsssss well said and well done you

  • Firstly, I have to say you are so brave at age 14 and suffering with crps. I have to give you a gentle pat on the back :-)

    I've only had crps since my twenties (just left ankle so far) and really do know how hard life is with it (also have fibro, chronic chest pain etc).

    I'm doing a degree through open uni, so wanted to say from a fellow student, good luck at school & whatever you want to can be done and you will do it!

    Big gentle hugs

    Jayne x

  • Hi

    I first started with CRPS in 2000 It can be difficult at times but like you I dont like to sit and brood .

    There is always something I can find to do to take my attention from my leg even if its only reading a book.

    Stick with your outlook on life it will serve you well .

    Big hug's to you ( careful of the bad shoulder)

    Fiona x

  • "People to talk to" that will take all the pain away will it??having this bastard disease in my left ankle means I cannot walk,constantly drugged up, I have become a worthless strain on the NHS which is already struggling like hell with of all the bloody immigrants swarming in,this once Great Country is sadly going to die..

  • I'm very sorry, that would be so terrible to get this disease in your leg but I didn't mean talking to people would help, I meant that if you feel alone you aren't. .

  • Well done AMMO_dog, for your words of wisdom. It is about distraction if your concentrating on something else the pain often fades to the back ground. Also as these sites show a problem shared is a problem halved. However in severe pain sometimes it can take over and occupy your every minute until you can find a way to ease it. Thank you for your thoughts on it.

  • See if your parents can take you to see an Alexander Teacher. Alexander teachers are not in the curing business. However, they can teach you how to develop better control of your muscles so that the stresses that lead to painful episodes can be reduced.

    Look at website

    Hope this helps

  • Fortunately, that is one thing I don't suffer from although I do suffer from many other things but your positive attitude is very inspiringx

  • You are a very smart!!! Way ahead of most your age. Also very brave!!! I'm praying you can keep such a positive outlook sweetheart!!!! xxxx Mitzi

  • I got diagnosed at 14, it was caused by rheumatoid arthritis I had since I was 8. I'm now 20 and work full time, please please don't suffer in silence. I have it everywhere (it's nerve damage spread and I'm constantly drugged too). Please, I know your young but if you need a pair of ears or just knowing someone who has it too, mail me :-)

  • Thank you :)

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