So very soon I am hoping to start a page for determining pain levels, Triggers, And how differently EM effects us all. I believe a lot of us are not getting a diagnoses because the research the doctors do is based off of the severe end of the spectrum (yes i believe EM is a spectrum disorder). If we had all of this info available when we see doctors then maybe it will make it a little bit easier to get the help and attention this Horrible Disorder needs. I will let everyone know when I have something worked up. In the meantime if we could all write down how this effects us and what kind of pain and such we go through will be a huge help. thanks everyone!
Thank you so much MsLovelyNikki!
I too believe there is a wide spectrum of severity when it comes to EM. The same person can have varying degrees of EM making it even more difficult to get a diagnosis. Mine can be any thing from an uncomfortable warmth. I can't begin to describe why it's uncomfortable it just is. I can also have such severe pain that I can not walk or use my hands. It has caused the most pain I have ever been in. The pain has been enough to make me scream and cry in public places, so much that every thing else around me seems to disappear and all I notice is the horrific pain.
The temperature or activity level that causes a flare also varies with me. I have had months straight where there is nothing that will stop the flare. It last 24/7 with severe pain unable to walk, dress, prepare food or do any of the basic necessities to care for myself. I am currently in a place where if I stay in temps around 60-63 and don't try to be too active I can minimize the flares. I still cant go to a restaurant or to a store for more than about 10 minutes without starting up. I have also had times where I could sit in a restaurant about 70 degrees ok but cant be active in the same temps.
I wish I could figure out what makes it change for the better or worse but there seems to be no rhyme or reason. I have kept a pain/photo diary with medications and food but they don't seem to make any difference with me. That is why when I
start a new med for EM I have to try it for a good 6 months to make sure any improvements or worsening is caused by the meds and not just the normal fluctuations I have.
Thank you again for taking the time to put this together. It is a strange thing this EM. Just like different treatments helping some while making others worse , everyone's EM is as unique as they are!
Take care and stay cool,
Alina
Good for you. I'll watch for it.