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Diagnosed with Mild Complex Regional Pain Syndrome :'(

casscubcasscub Posts: 138 The Mix Convert
Hello Everyone,

So that you all know whats going on here's an outline of everything that has happened.

In November i got kicked in the hip at a martial arts competition and was in hospital for 6 days. Then middle Friday of January just gone it gave out at school and had to go to a&e and came home on crutches now. Saw an orthopedic surgeon on the 31 March about it and i have had 2 MRI's and am getting the results on the 23rd June but have to see the pain clinic and need to have physio but my physio wont do any exercises or assessments with me with the fear of it dislocating

Then 23rd April I got rushed to hospital late Tuesday night by ambulance where I was given oral morph. They let me go home at 4am.. This was all because of my hip. As it popped whilst i was on the sofa so i tried to go upstairs and i fell on the stairs landing on my hip then went to the bathroom and threw up. After all that my leg kept going really hot then really cold and then it lost the colour and turned a grey ish colour

Then Wednesday 11th June i ended up back at hospital again because my left leg has turned inwards from my hip down and i am not dealing well with the pain and is making me continually sick


On 23rd June i had my appointment at the hospital with the orthopedic surgeon and although my MRI's came back normal he is thinking i have CRPS (complex regional pain syndrome) which can be life changing. I also have to go to a hospital over 2 hrs away to see the chronic pain clinic and then i have t see the pediatric drs at my local hospital about this all as well. I dont really know how to deal with what i was told or how to accept that my life my be changing for ever very quickly in only a few weeks all because of someone ignoring the rules of NO Contact in karate at the nationals


So thats whats now got me this far as yesterday (Wednesday 23rd July) I was diagnosed with Mild Complex Regional pain syndrome that has only a small chance of me recovering as i have no feeling in my left leg but i do in my right leg but it take a lot for me to feel anything at all in my right leg.

And so am now just wondering if anyone else has heard of it or knows anything about it? Just i feel really alone and really do want some help and support with dealing with this so that i am not dealing with it alone.

Casscub
"Yesterday is not ours to recover, but tomorrow is ours to win or lose" 
Lyndon B.Johnson 

Comments

  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Hey my lovely,

    I have nothing really to say, but I just want to offer you cuddles, you know where I am if you need/want anything. I understand a little bit with the CRPS from what you have told me, but I do understand the amount of pain you in.

    Sening owlie shaped cuddles your way.

    SuzyOwl
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Hey casscub,

    It sounds like you've been through a really difficult time since getting this injury, it's understandable that you're feeling overwhelmed and not sure how to cope, it's sounds like it's a lot for you to take in? Feeling pain can make you feel tense too, especially if you're expecting it to come back or get worse a lot of the time.

    Well done for posting about it here, you may find that other people can share their own experiences. It's worth asking the professionals that are working with you about what support they can offer or refer you for to help manage the emotional side of this. Having someone to talk to about how you feel as things change with your health will be really important.

    Do you have family or friends that you can talk to as well?

    It would be worth contacting Get Connected - they can help you to find specialist support services in your area as well as other online services and helplines: http://www.getconnected.org.uk/ It sounds like talking to other young people that have been through something like this could really help you to ask questions and work through some of your worries.

    *hug*
  • casscubcasscub Posts: 138 The Mix Convert
    Jo7 wrote: »
    Hey casscub,

    It sounds like you've been through a really difficult time since getting this injury, it's understandable that you're feeling overwhelmed and not sure how to cope, it's sounds like it's a lot for you to take in? Feeling pain can make you feel tense too, especially if you're expecting it to come back or get worse a lot of the time.

    Well done for posting about it here, you may find that other people can share their own experiences. It's worth asking the professionals that are working with you about what support they can offer or refer you for to help manage the emotional side of this. Having someone to talk to about how you feel as things change with your health will be really important.

    Do you have family or friends that you can talk to as well?

    It would be worth contacting Get Connected - they can help you to find specialist support services in your area as well as other online services and helplines: http://www.getconnected.org.uk/ It sounds like talking to other young people that have been through something like this could really help you to ask questions and work through some of your worries.

    *hug*

    Hello Jo7

    Thank you for your reply.

    It is a lot to take in as i dont really know how to take it in or even how to accept whats gone on for me.

    We have not told anyone else in the family yet and so my dad does not know about it and we have not told anyone of my friends either as they are all younger than me and i really dont want to make them worry or stress about it either.

    Thank you for the lovely hug too *hug*

    Casscub
    "Yesterday is not ours to recover, but tomorrow is ours to win or lose" 
    Lyndon B.Johnson 
  • casscubcasscub Posts: 138 The Mix Convert
    Hello Suzy,

    -cuddles gently and cries a lil- Thank you for the hugs it made me feel a lot lot lot better mentally i might ask in chat tonight if its on for a lil support. Not too sure yet though.

    Casscub
    "Yesterday is not ours to recover, but tomorrow is ours to win or lose" 
    Lyndon B.Johnson 
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Hey lovely,

    I just re-read what you said, the person that kicked you, was action taken agenst them for kicking you? You said that it was a no contact sport so surley that means that they would have been punished as such.

    I see Jo gave you the Get Connected website, my laptop was being a pain and would not allow me to link it. I've used them myself and would really recommend them, they are brilliant. You also have got BeatBullying and MindFull too, I do hope that you have managed to natter to someone there about what's going on for you.

    Lots of owlie cuddles,

    SuzyOwl.
  • casscubcasscub Posts: 138 The Mix Convert
    No she never got punished for it because we were the first pair on she was unpunished and the whole round started again.

    Yeah Jo did give me the link and am still on edge about going to them. I gave up with BB and MF though my lil owl. I said one thing and the next thing i know its been passed on to SG so i gave up with them. -cuddles-

    Casscub
    SuzyOwl wrote: »
    Hey lovely,

    I just re-read what you said, the person that kicked you, was action taken agenst them for kicking you? You said that it was a no contact sport so surley that means that they would have been punished as such.

    I see Jo gave you the Get Connected website, my laptop was being a pain and would not allow me to link it. I've used them myself and would really recommend them, they are brilliant. You also have got BeatBullying and MindFull too, I do hope that you have managed to natter to someone there about what's going on for you.

    Lots of owlie cuddles,

    SuzyOwl.
    "Yesterday is not ours to recover, but tomorrow is ours to win or lose" 
    Lyndon B.Johnson 
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    I was diagnosed with a similar condition a couple of years ago (I have pain all over my body and have to use a wheelchair because of it) and yes it is life changing, but there's always a way to make things work. The most important thing is to have really supportive friends and family - times can be really tough but if the people around you help keep your spirits up. There's lots of support groups for people with CRPS. Have you been referred to the bath pain centre? I'm going to be spending some time there and I've been told by a few people that they found it life changing - they can't cure you but they provide you with coping skills which allow you to live life as full as you can.
  • casscubcasscub Posts: 138 The Mix Convert
    Miss_Riot wrote: »
    I was diagnosed with a similar condition a couple of years ago (I have pain all over my body and have to use a wheelchair because of it) and yes it is life changing, but there's always a way to make things work. The most important thing is to have really supportive friends and family - times can be really tough but if the people around you help keep your spirits up. There's lots of support groups for people with CRPS. Have you been referred to the bath pain centre? I'm going to be spending some time there and I've been told by a few people that they found it life changing - they can't cure you but they provide you with coping skills which allow you to live life as full as you can.

    I have to go to one in Southampton not that i am overly keen on it as i really dont like hospitals :/ Although i think i might end up going there anyway as even with amitriptyline i am still passing out with pain and being very ill as well still :(

    Casscub
    "Yesterday is not ours to recover, but tomorrow is ours to win or lose" 
    Lyndon B.Johnson 
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