Originally Posted by ali12

I am SO sorry you are going through all of this and hope you start feeling better and get some much-needed answers real soon!!

I have had most of the symptoms that you describe. My legs give out a lot and I end up falling backwards and onto the floor which is very scary and embarrassing - it's sort of like I have no co-ordination over my legs at all and is a VERY scary feeling!! I've also had the ice running through my veins feeling and it was really strange as it felt like when I have had IV's and the medicine is really cold!!!

My Blood Pressure is often affected by the RSD. We tend to find that if I am in a lot of pain, my BP is way too high and I feel really dizzy but if i'm not in a lot of pain, my BP goes down to a more manageable level.

I've spoken to my Doctor about these symptoms before and he said it was from the RSD and that there wasn't anything he could do really. I felt VERY angry when he said that, like you and thought that he had to do something but I have sort of learnt to deal with it now and just accept it. I still get really scared by it and am often really close to going to the ER and me falling as caused all sorts of injuries, including a spread of the RSD to my arm.

My PM Doctor told me that the only thing he could really do for me was to give me muscle relaxants and Physical Therapy. I have come off all of my meds now as they weren't helping at all and were contributing to some of my problems but I still have weekly PT at my local Children's Hospital and do regular exercises at home on a daily basis. A lot of the exercises I do are to try and strengthen my muslces and I have to wear 2lb weights on each of my ankles and move my legs up and down - that hurts a LOT but I do feel it has helped me somewhat.

I hope you start feeling better soon and please keep us all updated when you can! I'm sorry that I can't help you that much but just wanted to let you know that you aren't alone!!