Hi Jenelle,

I'm so sorry to hear that you are going through so much right now and really hope that things get better for you soon! Please know that you are in my thoughts and if I can do anything, let me know because I DO understand some of what you are going through!!

I have been onto a program that sounds similar to the one that you are looking into however it was mainly Intense Physical Therapy. The program consisted of PT, OT, Psychologists and Orthotics to make assistive devices to try and help you 'cope' with the pain. The Program lasted 3 weeks and I had 2 and a half hours of PT a day plus working with a Psychologist on top of that to try and help me cope when I wanted to give in.

I'm not going to lie to you and say that the program was easy. It wasn't and was probably one of the hardest and most painfuliest things I have done in my life! I had to go through all of the PT without any medications and I felt like giving up more times than enough but somehow, I didn't.

Before I went onto the Program, I couldn't walk. At all. I literally had to have my mum and dad carry me anywhere and use a wheelchair. 2 weeks onto the program though, I took the first steps in over a year! The Program helped me and improved my walking and I am ever so thankful for that! I can still only walk short distances and need a wheelchair for long distances BUT it makes such a difference just being able to walk from one room to another, go to the toilet on my own without having to rely on my parents for everything etc.

I have been onto the Program twice now as the PT's weren't that happy with my progress the first time as my pain and Dystonia (movement disorder) had unchanged. The second time I went onto the program, it didn't help at all. The lead PT was away at a conference and i'm not sure if that is why or not but things just didn't seem to improve at all. I do think though that I learnt a lot of coping stratergies through the program and the Psychologist was very good at explaining things to me. The Program taught me that I am in pain all the time so I may as well try and do something and be in pain rather than just sit here. It's hard at times but I try and get out as much as possible.

I still deal with severe pain on a daily basis which ranges from a 6 and a half to a 8 and a half on the pain scale BUT it makes a whole lot of difference just to be able to walk and take myself from one room to another. The program gave me some of my independance back. I hate using my wheelchair long distances but figure that is better than having to use it all the time!!

I would definitely look into the program further. The program that I went on wasn't easy at all and was extremely painful but was well worth it the first time! I'm supposed to be going onto the program again but dont think I will be doing as my PTs now feel that I need to try further 'surgical' options to try and improve the dystonia.

I really wish that there was more of these programs available. There is only 3 in the whole of the UK and I was 'lucky' to get onto the program at the top childrens hospital.

If you are considering the program, I would definitely do a lot of research into it and speak to the staff there. Make sure that they know what they are doing! If they don't, it really isn't worth it and could potentaially make you worse. See if your doctor could put you in touch with anyone else that has been on the program to see how they responded. Everyone is different when it comes to dealing with RSD but my doctors on the program told me that if you are willing to put 110% into the program, you are really likely to improve to some degree.

As for the Morphine, I have heard a few people that take it and have tried it myself. It didn't work for me so I decided to come off it. If it is working for you though, it is probably worth continuing taking. Just be careful as it is a strong medication and speak to your doctor if you have any concerns.

Take care of yourself and if you have any questions, please let me know as I will try and help you if I can!

Let us know what you decide and please know that we are all behind you 100%!

Alison.