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.

Hi, our "Little Yorkshire Lass!" I was wondering if you know about the story of Zoe? You probably do. I'm not sure where in Engalnd she lives, but she had great sucess with HBOT. Her story was on mystery diagnosis a few years back. Well "Happy Christmas" to you and yours across the pond. We have gotten Christmas cards from family in Scarbourogh, Blackpool, and Yorkshire. Snowing and cold I hear. Its 60 degrees here in New Mexico. If you have the option you might keep open to HBOT. There are a few people on the UK forum that have tried and have had benefits. That forum has been slow for a while. I use to talk to a lady named Sue in the UK, I need to reconnect with her. Well... All the best..Di

Thank You Diana for your kind words !

Yes, I have heard about Zoe Pearson, she was actually treated for her RSD at the same hospital has me and is now a medical student training to specialise in RSD and other Chronic Pain Syndromes. I have spoken to her quite a bit although have never met her in person ... my PT's have also told me quite a lot about her and her story and success with HBO.

I am keeping the HBO in the back of my mind however when my mum spoke to my Doctor, he said that in my case, he really doesn't think it will help me. I don't want my mum spending that much money on me also if it isn't going to work but I guess if I never tried it, I would never know if it would work or not. A while back, we went to a HBO centre in Leeds (UK) and was due to start the HBO however I went onto the Intense Physical Therapy program about a week before I was due to start so we never got round to starting.

Here's Zoe's story for those of you that haven't seen or heard about it:

http://news.bbc.co.uk/1/hi/health/3383965.stm

Thanks again!

Hi my name is Paige and I'm 21, I have RSD/CRPS in my knee's and have done a lot of research about it. I came across Zoe Pearson's story of HBOT and decided to give it a go as every other treatment option has failed. I wondered as you have experience of the condition, the HBOT and have spoke with Zoe if you could shed some more light on it for me please? I'm currently trialling it and I guess I'm looking to speak to people who have/are experiencing the same thing as it is very difficult to find any support and information.
Thanks
Paige

Sorry meant to quote you Alison