In the last 2 years I have gone to the ER only 2 times due to the horrible treatment of doctors, limited or no knowledge of the disease and even though I am in terrible pain that is above what I can usually handle I am still treated like a drug addict. The last time I went to the ER was 2 months ago and even though my pulse was over 100 and my fever was 101.9 and I was crying, moaning from the pain and begging for help the doctors left me in the room for 2 hours with no assistance even though I brought my diagnosis of EM from Yale, articles on the disease and the TEA newletter and treatment options. I told them that my pain was at a 9 for 12 hours and that I was having the worst flare I have ever experienced. When the doctor finally came to see me he told me that if I did not calm down he would not exam or talk to me. I explained that I would calm down if I was not in so much pain. Like I could just suck it up and be still. All of those things fell on deaf ears. They did nothing for me and told me that I was going though withdrawl and they told me there was nothing they could do. Withdrawl from what? Ignorance of doctors and that type of treatment is what bothers me the most. I have constant EM but still have a flare 1 to 2 times a year and will now just stay home and deal with it myself. I am tired of having to beg for help. I think it is time to contact every major hospital and offer them a crash course of what this disease and others like it can do to a person who is only asking for help. "DO NO HARM" is being ignored in the medical community when it comes to disease like EM.
starsmurf said:
The link to stress is well enough known that my consultant used to schedule my Iloprost treatments to give me maximum effect at exam time. That was almost 20 years ago! I find that my EM also gets worse when I'm sick, I imagine that the general effects of an infection, bacterial or viral, cause increased bloodflow anyway and our hypersensitive systems go a little crazy. I used to get a type of infection in my leg called a cellulitis, when I got that, the EM would go off the scale and I would need very, very strong pain relief. Don't worry, it's not your imagination!
The medical physicist who diagnosed me as a child did tests that showed the very powerful effects of emotion on my bloodflow, and therefore my pain. Basically, any negitive emotion (anger, sadness, stress, feeling depressed) will increase the pain. I've had doctors say that I could possibly be in as much pain as I say I am, because I am not crying and screaming. However, if I was, in addition to increasing my pain, those same doctors would say that I'm hysterical. You just can't win.