Hi Loretta,

Thank you so much for your kind words and for taking the time out to respond to my post - I truly appreciate it .

I am so very sorry to hear that you have full-body RSD, I really hope that things start looking up for you soon. We have looked into HBOT quite a few times but my Doctor feels that in my case, it wont help and isn't worth spending all of the money on. It is still something that we are looking into though and is always in the back of our minds. I haven't found any medications that help me so far so i'm not on any at the moment. I do take Ketamine when needed though - that is the only med that takes my pain down quite a bit however I am only allowed to use it on my really bad day's as my PM Doctor feels it is way too risky for a person of my age.

I am supposed to be going to London in January for a 3 week inpatient, Physical Therapy Program and the PT's are wanting to put my leg into a full leg cast. I am REALLY scared about that and don't want to go there but they feel that it is the only chance I have of getting my leg into a straight position (at the moment it is severely rotated due to the Dystonia). I've spoken to my mum about it and she doesn't really want me to go either, she would sooner have me try something else and have the casting as a 'back up plan' - my mums the best and it really helps when someone actually understands some of what I am going through. I don't have that many people that understand.

We don't have use to a hot water (aqua) pool here at the moment but I did do aquatherapy before I was diagnosed with RSD and it didn't help me at all. I found that the water was way too painful for me and I could hardly tolerate it. I have spoken to my PT's about it and they said that because it didn't work in the beginning, it probably wont work now. At the moment, I am having weekly PT at my local Children's Hospital and am also doing exercises at home on a daily basis.

I do have pretty bad lesions and they really hurt. My doctor say's my skin is really brittle because of the RSD which is why I get them. I was told not to do anything with them and to just leave them until they heal but it's really hard because when I have them, I am unable to wear any socks which I need to wear to try and get rid of the hypersenstivity.

I am so glad that you have such a supportive daughter, that's great and I know how much it helps when people actually take the time and effort to see how you are doing and to make sure you are OK; it makes the world of difference!

I'm also glad that you have a cat. I have a dog, hamster, African Grey Parrot, Chameleon, Chinchilla and some fish and they really help keep me sane. With everything that I am going through right now, they have really helped me to try and get rid of this depression that I have. I love animals, they are always there for you no matter what and don't judge you.

Take care of yourself and I hope you're having a good day.

Alison.