Hi everyone,
Although I’ve made a few posts, I thought I’d officially introduce myself. I began having EM symptoms in February of this year. In addition to the EM symptoms, I was also experiencing joint pain, fatigue, rashes,and swelling. After suffering for several months, I finally got in to see a primary care doctor in April, and the search for a diagnosis began. At first, my blood pressure was the main concern. It had gone from slightly elevated (140/90) to extremely high (212/116). Obviously, this was my PC’s main concern, and I began taking a beta blocker, which helped bring it down.
From there, she suspected some sort of rheumatoid arthritis. Although her initial tests were unrevealing, she referred me to a rheumatologist, where my more in-depth tests were also unrevealing. Due to my many rashes (EM, livedo, hives, bumps, dermatographism), I was referred to dermatologist. From day one due to the photosensitivity of my rashes, all of the doctors seemed to think lupus, even though my blood tests didn’t match up. I had two painful leg biopsies in an effort to rule it out, and both came back inconclusive.
After regrouping with my PC, she referred me to a hematologist. She was concerned about polycythemia vera (due to symptoms, including itching after hot showers, a slightly elevated hematocrit blood test, and unexplained brushing). Long story short, I saw the hematologist for the first time week before last and was diagnosed with EM. However, he seems to think it is secondary to something else, so the search continues. I’m currently waiting on blood tests for PCV, mastocytosis (which neither of us think is what’s going on), and a few more I forget.
With that long introduction, I have a few questions for the group:
- How have you dealt with the live-changing aspects of EM? For me, I have had to avoid the sun, shoes/socks, and basically anything that makes me hot, including exercise. This has been very difficult, and I sometimes feel I’m being held hostage by EM. It’s the summer in TN, and I cannot go to the pool or engage in outdoor activities. I’ve always enjoyed exercising, but it is impossible without shoes and socks. I can’t even sleep as before. Thankfully, my doctor finally prescribed me Ambien for sleep, but the pain and burning still wake me up at times. I can only sleep with my feet outside of the covers, but that’s not enough to be comfortable.
Of course, the emotional ramifications have also been difficult. I’m constantly in pain. My family and friends are no longer interested in discussing my symptoms and think I’ve become consumed (easy for them to say), and the financial cost has been insane. The doctor bills have been piling up, which only adds to the stress.
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How do you handle the very real chronic pain that is caused by EM? As the doctors haven’t been able to diagnosis me, they have basically ignored my complaints of pain. I have been offered no relief from medication, other than the massive amounts of Ibuprofen I take. After my EM diagnosis, I was told to take a baby aspirin a day. While I am hopeful this will help, it hasn’t yet. During this controversial time in medicine regarding pain medication, I feel like that is an unlikely option, but I also feel like it is not humane for them to leave me in a constant state of pain.
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After diagnosis, what steps did you take to request pain management? Did you start with aspirin and then ask for something else? Or did you let your doctor try out different drugs? Is there something I should ask for?
Sorry for the long post, and thank each of you for sharing your stories. They are encouraging and informative. I feel very lucky to have found this group.
Since joining this group, I’ve found it very interesting to read other people’s experiences. It certainly seems like EM affects everyone differently. From site to pain level, no one seems to have the exact same symptoms, which I’m sure only makes it more difficult to get diagnosed.