CSSmith
Yes, I do think many of us do research this way and especially those of us with a disease/condition that is not well known in the medical community. My condition, RSD Reflex Sympathetic Dystrophy or CRPS Complex Regional Pain Syndrome, is easily explained as a form nerve damage, that is a very simple explanation. This disease or monster (as I call it) does not follow a set path or progression in each patient. The severity of this disease is not directly related to the severity of the injury that caused it. Each RSD/CRPS sufferer responds differently, each of us has an individually tailored medication regiment. One of the things we discuss alot is medications and their various side effects. We discuss how to find a good doctor, what type of doctors we see. We ask questions about various physical therapies. We discuss new symptoms and what they might mean. We talk about and try to explain medical terminology that often seems confusing and contradicatory. And many of us read and do research on a daily basis, sharing the new information and research we find. We ask each other how we cope with things like staying warm, depression, or difficult family members. These are not things you will find in articles but they are important to me for my survival.
The other benefit is the understanding and support from those like you. Sometimes, the only person that truly can understand is someone afflicted with the same condition.
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CSSmith
Yes, I do think many of us do research this way and especially those of us with a disease/condition that is not well known in the medical community. My condition, RSD Reflex Sympathetic Dystrophy or CRPS Complex Regional Pain Syndrome, is easily explained as a form nerve damage, that is a very simple explanation. This disease or monster (as I call it) does not follow a set path or progression in each patient. The severity of this disease is not directly related to the severity of the injury that caused it. Each RSD/CRPS sufferer responds differently, each of us has an individually tailored medication regiment. One of the things we discuss alot is medications and their various side effects. We discuss how to find a good doctor, what type of doctors we see. We ask questions about various physical therapies. We discuss new symptoms and what they might mean. We talk about and try to explain medical terminology that often seems confusing and contradicatory. And many of us read and do research on a daily basis, sharing the new information and research we find. We ask each other how we cope with things like staying warm, depression, or difficult family members. These are not things you will find in articles but they are important to me for my survival.
The other benefit is the understanding and support from those like you. Sometimes, the only person that truly can understand is someone afflicted with the same condition.
I hope this answers your question.
October 24, 2009 - 5:17pmThis Comment
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