Dr dx my EM last month on the 17th, went in today to go over my labs and EVERYTHING is perfect. I have several food allergies (wheat, barley, rye, oats, buckwheat, peanut, soybean, crab, tomato, orange, white potato, coconut, strawberry, and a ton of environmental. (All were sudden onset, I’ve never had food allergy in my life.) After she told me that my lab work came back normal for the CBC and metabolic panels, I asked what could be causing my feet and hands to freak out so much and she said “it might be an allergic reaction to something.” So my question… Has anyone had their EM as a result of allergic reaction? And did it stop/flare with allergens? I felt so good about going into this appointment and I feel totally lost once again after leaving.
I wrote you a long response that was so confusing (it certainly exposed my confusion over this very question) that I scrapped my response. I have allergies which developed in my 40 with obvious allergic response that were not EM flares, and food and chemical 'intolerances' that developed a couple of years later -and my bodies response to those intolerances was the development of EM. But, what once was a clear line between EM and allergic responses is now a bit more blurry. Often my Em flares have allergy like symptoms too . It is confusing. And scarey, especially when I had my second, and still unexplained anaphylaxis response. Now if the Em flare is severe and I have some of the more allergy like symptoms I take a course of H1 And h2 blockers and a short course of prednisone and it definitely help with the allergy symptoms and helps partially with the EM symptoms . either I am not understanding the full picture or doctors don't understand it that we'll, either. I suspect the latter part of that sentence is the most correct.
I just want too add that I hate taking the h1 and h2 blockers because they stop an already too slow gi system and the prednisone makes me anxious, sleepless and sends me a bit 'loony tunes' - so not something I do lightly.
I first thought it was allergies but I’m not so sure anymore. I had an anaphylactic reaction to something, that brought me to the ER. My Em started two months later and became way worse during the summer. After all of my allergy testing and switching all of our soaps and cleaners to hypoallergenic, I’m still having the flares. And that’s with strong avoidance of known allergens. This past winter wasn’t bad, but as soon as it got hot here my feet and hands have flared. I know food allergies def kick off a flare tho.
My first anaphylaxis response, to aspirin, showed up two years before EM. not long before that I had been diagnosed with asthma. Following my first anaphylaxis response I had a more 'normal' allergic response - raised red rash on my torso if I remember correctly -to doxepin. Both meds r often used to treat EM. Development of EM was gradual over a few months I think. I thought I was just too hot. And redness of my skin just deemed strange. But that intermittent EM SYMPTOMS became full blown EM following an injection of pethedine for migrsine. I was already experiencing undiagnosed POTS, and chronic migraines that were then lasting 5 days. An elimination diet helped with EM (undiagnosed and i had no idea what it was),but I am now more sensitive to those food chemicals than before I started the diet. During this time I lost my ability to sweat, then my bowels totally shut down. It was some years before I was diagnosed with pots and erythromelagia and that diagnosis only came about because my allergist, who I was seeing increasingly, trying to deal with more and more allergies and in tolerances, suggested I go see a particular specialist. I nearly did not go. But I did, not expecting much as I had already been seen by a cardiologist and 2 neurologists. Anyhow, that specialist, a vascular consultant, diagnosed Em straight away and told me at my next visit, after tests, that I was also suffering from pots. POTS, Em, chronic daily migraine and I suspect a mast cell activation disorder. Oh, recently been diagnosed with mitral valve prolapse. I collect diagnosis as a hobby it seems. But that doesn't mean they can fix anything -yet. My thoughts are that autonomic Nervous system disorder is the cause of all these things in my case and most of my docs would agree, I think.
Oh wow Blue that’s terrible! I am sorry to read about all you’ve been through I can’t even imagine how horrible that is! I feel weird when I take aspirin/ibuprofen so I stay away from that for sure. Is your Em secondary to those other conditions?
My doctor has no opinion on it. We don't talk 'primary' or 'secondary'. It just is. At age 58 I believe i am now unlikely to get to the cause of the problems but I am looking for better treatment. I just want the best life I can have. Most people has some physical or/and mental health issues by my age. I got sick too young, but many people get sick as children, teens or young adults which is way too young. Family and friends my age have pretty much all caught up to me, health wise, now. They all seem to have at least one health issue. I just want to lower my pain levels now. And move from living on the 3rd floor of an apartment block into somewhere I can walk outside onto grass, have a dog and entertain.