I read your post regarding your unusual disease and the frustration you have in not receiving enough support from your doctor and relief of pain. I have never heard of your disease, so I spent a few minutes researching to see if I could learn a little about your condition. What I found made me understand why you are feeling so upset and concerned about the lack of support you receive.
I found one web site that I thought you might be interested in: http://www.ednf.org/whatisit.php I think that it would help if you could find other sufferers of your disease to give you the information you need to help you in your efforts to gain relief from pain.
You are very young to need strong pain medication, and I have to say most doctors are reluctant to give strong pain medication to mature adults.... so I imagine the difficulties you face are very frustrating. Brandon, visit the web site I mention above... I feel that you would find more accurate information and support from others who are suffering from the same disease. Adhesions are very different to what you suffer with and all I can do is help you find others living with the same challenges as you. That doesn't mean we don't care, that isn't true... you will be in my thoughts and prayers as I am sure others who read your message will too.
Pain is a terrible thing; it controls our lives, lifestyle, and activities and it is life altering, that much we do understand. I hope that you receive the special love and support you need from your family and that you are able to draw on them to help you cope with your daily life.
Please let us know how you get on, we hope that some day there will be a way of helping you overcome this horrible disease.
Love & warm gentle hugs, Jo
-- Joanne Eslick Founder Australian Adhesions Support Group http://www.bombobeach.com NSW Australian Co-ordinator of International Adhesions Society http://www.adhesions.org
-- I am not a medical person, and all my messages are based on personal experience. I am a fellow adhesions sufferer reaching out to help others.