hi al. i hope you're feeling less alone and overwhelmed now. i have had rsd for about five and a half years and i understand how scary and lonely it can be to live with an illness that most people never heard of, don't really know what treatments are best and don't know what the outcome will be for each of our futures. being that i also believe that rsd is an autoimmune disease (though i am not a dr) i have since suffered from fibromyalgia, endometeriosis, abdominal issues including gallstones and acute gastritis, osteoarthritis, osteopenia in both hips, massive infections in my gums causing me to lose five of my teeth so that i can only chew on one side now and my most recent health issue and my scariest next to rsd is my heart. i have been in the hospital recently because i am having trouble breathing most of the time and though i've been through many test, my drs tell me that my heart looks ok but my blood was thick and i was not getting enough oxygen to my heart. no sign of bloodclots in my lung and no signs of heart damage. i do have irregular ekgs at times but the most the drs can offer as a reason is that it may be muscleskeletel (sp?) and anxiety and depression (panic attacks) which i also suffer from. i know from what i have read that rsd can cause swelling of the internal organs causing restriction of blood to flow to the heart through the blood vessels. i am afraid that rsd has been affecting me internally now as well as externally. and when i try to explain this to drs in hospital i just don't think they understood fully what i was saying. so i have printed out info on it made by drs and will send it to them. i know they tried their best but it would have helped if they could have just looked up rsd to understand that what i was telling me was true.
anyway to get back on point, i understand what you're feeling and am so sorry you feel this way. i have learned that the best way to deal with those feelings of fear lonliness and depression is to learn as much as you can about rsd so that when you feel that the people in your life don't understand, you can explain it to them. i also find that having a strong support network like the awesome people here at NT helps me get deal with the lonliness. and knowing that their are others that are understand what i am going through helps me deal with my rsd pain and depression a little better. learning to trust your instincts about your body, becoming your own best advocate and connecting with people that care and understand like here at NT helps to cope with those feelings. at least it helps me. and please know that i understand and care and am here if you want to talk. you are never alone here at NT. and though rsd can be different every day, trying to just take things a day at a time and living in the moment helps reduce my fear a little. i hope you know that you are not alone and that you feel better soon.