Newly Diagnosed and Still Struggling with Pain

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:

  1. 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.

  1. 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.

  2. 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.

  1. I’ve made the adjustments because I have to. I sleep with covers a certain (re: unusual) way. I eat breakfast, lunch, and dinner spaced to coincide with when I have to take my medication. I bought a freezer to have in my bedroom. I’m thinking about moving to Seattle, LOL. (Not serious about a move yet, but it has crossed my mind. Seattle looks nice.)

  2. I don’t really have chronic pain. Ice is very effective at taking away any discomfort associated with a flare. The medication I take (Mexiletine) also takes away much of the sensation associated with a flare. Occasionally I’ll have a minor flare (after exercise, for instance) and I won’t even realize it until I look down to check.

  3. Not applicable for me.

Thanks for sharing :slight_smile: 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.

Ice is also becoming a close friend, especially on my feet…I just wish it worked as well on my hands.

And the Pacific Northwest has definitely crossed my mind more than once… the South and EM do not mix lol. I told my friend I need to find the perfect temp: not too hot, not too cold (so I don’t have to wear socks) :slight_smile:

It certainly does. Some get swelling, some don’t. Some have high levels of pain, others don’t. From a year and a half of reading here, it seems like the only constant with EM is the disparate symptoms present.

Technically I don’t have a diagnosis as we’re waiting for my genetic results from the NIH, but my neurologist believes I have primary EM. Although from what I read, one is mostly diagnosed from observation.

Anyways you mentioned your elevated BP and I was wondering if it spiked/fluctuated? My BP usually hovered around 150/100 and spiked to 180-210/120, during symptoms or on its own. Flushing skin plus high BP and everyone thought I had some sort of NET/pheochromocytoma. Took me 6 years to finally rule it out.

To answer your questions:

Well thankfully I live near Seattle, about 90min south, so its not too bad. I have to avoid direct sunlight when 70+. Its rarely 80+ here, maybe a weeks worth during the year, but when it is I have to babysit a fan. I just avoid any other triggers, mostly anything that gets my blood pumping.

Someone suggested a cream preemptively but my flushing (I’ve called it flushing for 6 years because of pheochromocytoma) can occur anywhere on my body…and asprin/ibuprofen don’t help so I just wait it out. Cold/ice helps but i don’t use it unless its 90+. My “flushing” is comparable to sunburns in pain but thankfully it doesn’t last as long.

I haven’t been diagnosed yet but my doctor has mentioned something about knowing which genetic mutation I could have will help knowing which sodium channel blocker will help me.

Hi Steve,

I’m not 100% sure if my BP spikes/fluctuates, but I think so. It went from around 140/85 or so to between 150-160/90 something to over 200/100+, depending on when it was taken. I’m on a beta blocker now (2nd one), which seems to have taken care of the very high numbers but it still seems to fluctuate between 120s- 160s/70-90.

It’s interesting you mention pheochromocytoma. My hematologist mentioned his concern about this possibility at our visit.

Good to hear you live in a not-so hot place. Seattle seems to be a popular destination for individuals with EM. I get flushing on various parts of my body (neck, chest, sometimes arms) but the EM is on my hands and feet. Like you, the flushing is more like a sunburn compared to the burning pain of the EM.

That’s very interesting about specific genetic mutations responding to some sodium channel blockers better than others.

Wishing you luck with your testing! Hope they get to the bottom of it :slight_smile: