Quote:
Originally Posted by ali12
Hi Nicole,
I hope you are Ok.
I totally know how you feel about people not 'believing how much pain you are in', before I was diagnosed doctors would say to me that I was 'making the pain up' 
My moms great she is a really good with me, her mom (my nanan) had MS so I think she understands neurological disorders. My dad is more of a 'bury your head in the sand person', I am sure that he thinks that if he doesn't think about my illness then it would go away - but life is not like that unfortunatley. My grandma and grandad are still confused about what is up with me, I don't think they understand how bad the pain is. I am unable to go to school but my friends are really good with me, they come and see me at home, take me out etc. I am very lucky to have such good friends, it's times like this when you find out who your true friends are. Yes, some of my friends don't understand RSD, but most of them are Ok with me.
My health proffessionals (PM doctor, Physiotherapists, Psychologists etc) are not really good, I don't think they know much about RSD. I had a Guanethidine nerve block on my leg in March, which caused me to lose my balance and the hospital couldn't even be bothered to lend me a wheelchair, even though I need one, my mom had to buy one 
Congratulations on getting married
Take care
Alison |
Hi Ali,
I do worry so much that you have a Pain Management Doctor and team whom you say don't know much about RSD
This is simply not on as anyone who claims to be a Pain Management doctor MUST know about RSD and it's treatments. It is actually becoming quite a common cause for chronic pain.
Please, please, please change you team.
You do need to be moving your leg, but you must be given the correct pain management to make this possible. I am sure your balance problems can be solved if managed properly. The longer you are in the wheelchair the harder it will be to ever get out! I made the wrong decision years ago thinking that walking was just too difficult and painful so the wheelchair would be a better option. I truly regret that now and wish I has someone who had made me keep moving in the knowledge that just because it hurts does not mean it is damaging.
I just can't understand how a 'Pain Management Team" can allow this to happen, especially to a child---I am so sorry.
Love Tayla
