Hi Jenna,

I am sorry to hear of your worsening pain. Getting someone on board who believes you and wants to help you is imperative. If you can get to Cleveland Clinic it might be worth it. Dr. Michael Stanton-Hicks is there. He is a highly respected CRPS specialist and researcher. Their pain department will be familiar with CRPS, with spread, with all manner of presentations.

Frankly, I would not waste any more time with a practitioner who isn't believing what you tell them. I don't know how you could possibly be cared for properly under those conditions. What if they do injections for you and you have complications? What will they believe then?

Your age is irrelevant, but it is often helpful to go to appointments with support. If you have a parent or other older relative in town, take them with you. You won't feel so alone and doctor behavior may alter slightly.

If you can't get to CC soon, then call around and find other docs who treat this and can get you in. The less time you have such pain intensity the better. You may have to doctor shop a bit. Sad but true. I landed with the 3rd pain specialist because I just wasn't impressed or comfortable with the first two. Your confidence in your doc is important.

Please let us know what happens. I am praying you find help and relief soon.
Sending hugs and healing love,

Luckily I live really close to the Cleveland clinic and I will DEFINITLY be calling about that doctor. Because I am currently with some one in pain management from there who just doesn't listen. So I'll talk to getting in with that doctor. Even my original CRPS doctor that was pediatric was amazing and he was with CC too so I'll probably get in with that doctor because all my history is there.

Thanks so much for the sugestion!!!

Dr Stanon-Hicks is no longer seeing patients but there are other doctors in the pain management clinic, I saw Dr Bruce Vrooman at the clinic and he was wonderful. He is the only doctor that does the ketamine infusions but there is at least a 2 year wait list. However he did offer several suggestions that I can try. I chose not to have my lumbar sympathetic blocks done there because I live about 2.5 hours away. Overall though I had a great experience. When you are making your appointment if you want to see Dr Vrooman you need to tell them you want to see him specifically. Good luck!

Thank so much!