[Lynns409]

Hi all!
My name is Linnie, and I am 25 and have RSD. I've had RSD for almost as long as I can remember- since I was 11. I was a competitive gymnast since the time that I was 2 and destroyed my knee. Now I have a SCS and am actually doing pretty well. I have a bizarre blood clotting disorder (Protein S Deficiency) that I developed as a result of a clinical trial for RSD that went very very wrong. Don't ever try any experimental drugs offered by the company Celgene! They will kill you!

Even though the blood clotting stuff can be pretty bad at times, I have been fairly successful lately in controlling my pain. After years and years of surgeries- I completed college while having my SCS wires re-implanted over winter, spring and summer break every year- and years of oxycontin and other fun meds, I'm down to the minimum of meds. So what did I do?

I stopped eating sugar and artificial sweeteners. This helped both my pain and my immune system. I didn't get bronchitis for over four months! (That's a long time for me!) I went mostly all organic, and don't eat highly processed food or anything with hydrogenated soybean oil or MSG. I drink tons of water!

But the main thing that really got to the heart of the pain is this program that I found called "Mindfulness Based Stress Relief". It's really this tool that allows you to learn how to sit with yourself and be still. It's funny- I can't really put it into words, what it really is. But it is incredibly helpful. It's hard- it's not an easy thing to go through or learn. You have to get close to the pain and the depression, closer than you have ever been before. You have to begin to meditate everyday. And that's not an easy thing either. But after a while it becomes this time that allows you to be still and quiet. And once you are in this place you can notice things that you do on autopilot and then you can change them. You can reduce stress in your life this way, and it can help your pain so much.

There's a great book that goes along with the program called "Full Catastrophe Living" by John Kabot Zinn. It outlines the philosophy, the meditation and yoga practices that go along with all of this. Gentle yoga!

I hope that I can share my experiences with others, turn to you all for support when I'm having those overwhelming days and just make friends in general. This is such a weird disease- I look fine and it's so hard for most people to understand that my pants hurt me some days or that the freezer ailse will make me scream if it hits my leg.
So that's a bit of me!
Linnie

[dorrie]

Hi Linnie! Welcome to Neurotalk!

[Darlene]

Linnie,

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

Again welcome, looking forward to seeing you around.

Darlene