FRUSTRATED!

I am thoroughly frustrated with my doctors. My pain Dr., my general practitioner, they have no idea about how to treat me for Adhesive Arachnoiditis. I think when I am in their office and trying to explain it, it's in one ear and out the other. I was trying to explain to my pain Dr. how my flares were when I had them. My back hurts more in the thoracic spine and the muscle spasms are all over my back. It's like it tightens up and is in a giant cramp! He told me that Arachnoiditis only affects the lower spine, not the thoracic. WHAT? HUH? WHAT? I knew right then that he only knew part of the story and that's why I am still dealing with all this pain! I think too that he is concerned I blame him for the epidurals he gave me causing it. I don't think he did, I think I have had it a long time. I have had so many traumas to my spine. I told him I wasn't concerned with who or what, just help my pain!
So I took matters into my own hands today. I sent a link http://www.practicalpainmanagement.com/…/adhesive-arachnoid to My pain Dr. and my general practitioner and told them I was desperate for someone on my care team to understand what I am dealing with. I told them that I am not trying to be condescending, I just really want them to know what I am dealing with so they can help me better and I begged them to please research it! Did I go too far? Shouldn't I be my own advocate? All of the articles we read tell us to advocate for ourselves when we don't feel we are being heard! It is so hard to do with a pain Dr. though. Everyone is so uptight about drug addicts looking for drugs anymore that those of us with real pain issues suffer! Nobody wants to give out the strong stuff that's needed because of possible addiction. Well I tell you what, you live in my body for just one day during a flare and tell me that some muscle relaxer is too strong for me, that it's meant for those with MS or something! I am in no way ever going to say that any disease is worse than the other but I get so dang tired of being cast aside because I have a rare disease that no one understands!  Adhesive Arachnoiditis is on the list of rare diseases! I don't want to be messed up out of my head, I have a life I want to live, but when I tell you that my flare ups are cruel and make me question living for the next 30 years with this, then you need to listen! I hurt so bad, I used to cry, now I don't, it doesn't make it feel any better. It doesn't even make me feel any better. I just grit my teeth and get through it as best I can. Romans 8:18 I consider that our present sufferings are not worth comparing with the glory that will be revealed to us.
Love to you all, 
Cindy