Being A Child With CRPS
I've been quite hesitant to post this, to be honest. After all, no one has even used this subforum in quite some time and CRPS isn't something that I usually reflect on or even associate myself with - for a couple of reasons.
Firstly, I was around 12 when I experienced CRPS, and thanks to some an amazing doctor and physiotherapist, I managed to recover within a little over year. Secondly though, when I think about it I feel anxious that it will happen again, even though it most likely won't, it's just something that's out of my control.
I'm not here to recount on those anxieties though, I want to tell you a bit about my experiences. CRPS is pretty rare, and some awareness on any topic is always necessary. Also, I think it's just a story that I need to get off my chest.
It actually all started with me rolling my ankle - as a gymnast, that's something that I've done a million times before, and this time was just the same as any other. It was a bit sore, but we wrote it off as nothing, just another injury - and it was. Within a few days I could walk on it again, and things were only a bit sore until around a week later. I was walking out of school and all of a sudden I felt a searing pain in my ankle, I just couldn't take another step. I had to sit down until somebody came and helped me out. I got crutches not long after that, and I was on them for 6 months. In this time, my ankle would swell up and even turn a purpley colour, if it was touched I would feel pain. So we went to physio after physio, each of them having no idea what was wrong with it and recommending X-Rays, CT scans, MRIs - each of them showing that there was absolutely nothing wrong with my ankle. The thing about CRPS - it's all in your head. There's real pain and real symptoms, but no real injury. Finally, one physio told us of CRPS, and recommended a specialist at the children's hospital - the specialist confirmed this theory, and basically gave me two options: I could either bare through the pain and go through a rehabilitation program, or I could get surgery - nerve blockers and some other things that years later I can't quite remember.
I chose the rehabilitation, even though it seemed impossible at the time. I still remember the months of hydrotherapy - it was mortifying. Being a 12 year old who couldn't even make it into the shallower water for too much pressure being on my ankle - surrounded by a bunch of old people who were there to exercise their ageing bodies. Slowly but surely though, I made it to the shallower water, then up the ramp, until finally I could stand on two feet. Then I had to build up the muscle again. I remember one of my physio exercises was standing on one leg in the corner - it sounds so simple, and yet I didn't have the muscle to stand for more than a second at first. And then, eventually, it was better. I can't even pinpoint an exact time, because the entire journey was so long, so slow and gradual - but, I did make it.
I know that my CRPS was really quite mild compared to some, and I by no means intend to erase those stories - I simply wish to put mine out there.
Feel free to ask if you have any questions about my experience with CRPS - I'll be happy to answer them if I can 
For more information on the syndrome itself (specifically in children), you can click here
@PhoenixAsh I may not know what exactly you've been through and how could be painful it is to bear it, I'm so proud of you for sharing this to the community and raising awareness as to why this syndrome should also be talked about. I hope that your ankle is in a much better condition now and please do take care of yourself! I'm very informed on how you love gymnastics but you shouldn't put your health at risk even though I know that we couldn't really determine when accidents happen but it's better to be cautious.
@PhoenixAsh While it's not going to be possible for every chronic condition, it does bring some hope to hear of someone who has recovered from a chronic pain condition! Thanks for sharing this!
@PhoenixAsh thank you for sharing your story and offering to answer questions. it's really an important step to raise awareness.
@PhoenixAsh
Thank you for sharing ash <3
@PhoenixAsh
Thank-you for posting this. The article and site you linked is very informative.
It is amazing what our brain can do isn't it?
Thank you for sharing this. I hadn't heard of this devastating condition until this post. It was a very informative read and I'm really, really sorry that you had to endure that. It's even more frustrating that the cause of it is all in your head; it makes the solutions way more difficult. :c -hugs-
@PhoenixAsh I'm so sorry, I have crps, how did you withstand rehabilitation? I was just 18 when I got crps, so there were some dynamics of me still being "a child" in that situation. But being an adult I refused physical therapy because it was way too painful and the people there were not sypethetic of the fact that I lived with pain and was also trying to graduate high school (said I had to do exercises every hour which was not realistic). I was bearly making it through the day as it was.
@dyingPrincess8040 hey, Im sorry to hear that youre living with crps, I can imagine how difficult that is. I think there were definitely a lot of differences in being diagnosed so young: my rehabilitation process was dictated by my mum, I had more time to spare, and I was in primary school which has a lot more freedom. I think the thing about rehabilitation is that its an excruciatingly long process, while being an excruciating process too - so its difficult to look to it with an open mind that things will turn out okay in the end. Being so young I think I understood that but didnt fully comprehend it. Thinking back on it now as a 17 year old, I know that while I was frustrated with the situation, if it were to happen now I would feel much more stuck in it. Rehabilitation is definitely just a lot of baby steps, and its as much a mental challenge as it is a physical one. I think thats what a lot of people forget to consider when looking at rehabilitation, and why I can imagine it would be more difficult to endure as an adult.
@PhoenixAsh That makes a lot of sense, I think it would have been easier to make the choice to go through rehabilitation easier if they had understood the challenges of being in that kind of pain. That is why I'm greatful I'm an adult now, I can make my own choices and they are not dictated by someone who has no idea what its like to live in my body. There was nothing more frustrating then when I was being treated like a child, and they attempting to make all the decisions for me. When they can't fathum the amount of pain I'm in.