Hey Karen.

Firstly I just wanted you to know that I am thinking of you and sending you love and hugs. I wanted to say please don't give up - have you tried the Prialt pump? one of my friends in the US who has VERY VERY VERY severe RSD which has caused gastroparesis and all sorts of very nasty symptoms - she has been fed by IV, G tube and now has a (Can't remeber - it goes into her intestines).. She had a prialt pump placed and it has helped her alot.

Secondly. I do know what living with this disease is like - I developed it when I was 16 (5 years ago) and it became full body within 6 months. I have been wheelchair bound for 4 years. Last year I lost the use in my arms, and most of the use in my neck and face. I go through periods where I can only move my eyes and cheeks but luckily haven't had a serious relapse to that in several months. Which is good . I am apparently stage 3/4 and have organ issues from the RSD. It really sucks and it is REALLY hard to live with some of the more horrible symptoms (which I don't discuss on NT really). I have a compromised immune system from the RSD and at times I have been very lucky not to have to have amputations - it was threatened for my right arm and my legs. I am so glad we didn't go through with it though.

I was pretty much bought up in a single parent family and my RSD/WEWRMT has effected our family so much. However, it has made us a lot closer. I started university earlier this year (October) and now have 24 hour carers. This has enabled me to be able to get on with my life more.

I couldn't work out from your email whether you have split up with your guy or not. I have personally found that there are men out there who are not scared by the RSD and who are willing to do anything for a woman they love - I have been engaged 3 times to different men - but it has ended with me breaking up with them.

I think you were trying to say that you have been diagnosed with a terminal illness? or whether it's the RSD that you feel is terminal? No one knows what will occur in the future.... especially with RSD.

Would you have any chance of having carers come in to give you a hand with things? that might help? Also you can have things like botox into your bladder which reduces the chance of it "leaking".

This email probaly hasn't been helpful to you at all. However, I just wanted to say that I can empathise with your situation and I really hope that it improves, and if it doesn.t that you can find good coping mechanisms to deal with it.

If you do need to talk then I am here.

Love

Frogga xxxxxxxxxxxxxxx