Hey Sandy,

So sorry to hear that you are feeling down at the moment!

I can totally relate to how bad the Anniversaries of RSD are and am sure that many others can also! I had my 2 year anniversary of RSD on the 20th March and found it really hard to cope with and felt pretty sat and depressed that things hadn't improved in 2 years, but I survived!

Please allow yourself time to grieve. RSD is like losing someone that you love as you have lost some of your old life. You need to allow yourself to let all of your negative emotions out and then try and pick yourself up and focus on the good things (the fact that you can work etc).

I allow myself to have pity parties every now and again and find that they help, as long as I dont stay in them for too long. It helps to let your feelings out and it doesn't make you weak at all! No one can expect you to be strong all the time with RSD!

I really admire the fact that you're still able to work with RSD! I go to school 4 hours a day, 4 days a week and that is stressful enough so I can't imagine how hard it can be working full time at times! You're amazing!

Take care of yourself and please know that we are all here for you and always will be!

You're in my thoughts.

Dear Ali:

YOU humble me with YOUR strength and determination to achieve your degree while battling RSD so badly in all your limbs at only 14 years old. You are spending a significant part of your day in intensive PT. And you do it all without meds most of the time. WOW!! (I cringe at the thought of intensive PT or someone touching me in my affected shoulder - I am seriously whacked in the head when it comes to that stuff!). You are very special, and I sincerely hope that you are happier in your new school. Dive into your studies, enjoy the good weather (when it comes to the UK), and develop relationships with good people who like you for YOU, and before you know it you will be working also.

Thanks so much for your reply, XOXOX Sandy

Sandy, your words really touched me and bought tears to my eyes! Thank you SO much for your kind words ... they mean a lot!!!

It IS very hard at times trying to stay positive at times with RSD but I guess I have figured that I am probably going to have this thing for life unless someone finds a cure or some magic treatment comes out that will help so can't let it ruin my life too much.

RSD has affected my life sooo much and I have missed lots of my childhood and don't want to lose any more. There are lots of things that I cant do because of my RSD but I try and do what I can when I feel up to it.

I think RSD was one of the reasons why I want to be a Psychologist. I have learnt a lot since developing RSD and want to try and help others in a similar situation if I can. I'm lucky to have my mum looking out for me and helping me get into College from September to try and reach my goals.

I'm not undergoing intense PT at the moment but it is something that we are looking into. My PTs want to try and book me in for at least a week intense PT in a few weeks to try and help with the RSD and Dystonia. I'm hoping that it will help. None of the pain medications helped me and made me worse so I think that is what makes it 'easier' for me to undergo PT without meds because none worked. Ketamine helps a little but my body has built up a tolerence to it so it doesn't work as much as it used to.

Thanks so much again for your kind words!! Stay strong and take good care of yourself!