For some years I was able to control my EM flares somewhat. Not completely, obviously. But I found out if I avoided food that contained medium to high levels of salicylates, any amines, and glutamates (not 'gluten') my flares would mostly be a lot less painful and occur quite a bit less. It was usually when I tried new medications I'd sometimes run into trouble. I'd still get hot and often red and feel too overheated, but the sunburned feeling and my problem with finding clothes soft enough that didn't hurt my body and sheets that didn't 'cut' into my skin -- that sandpapered feeling -- would, for the most part, play up only when I went ''off the low salicyate, no amines or glutamate diet.' I didn't push for a medication remedy because by denying myself a great variety of foods I could keep the EM under control to a 'good enough' degree. Despite my eating practices becoming so distorted and unhealthy (Thank the gods, for vitamin tablets) the EM flares have become much more pronounced and painful anyway. This has occured over the past few years. I've spent over 10 years on the diet but now am faced with feeling a lot of EM pain anyway. However, when I try to go off the diet and resume a more healthy normal way of eating I end up in 'my' extreme level of EM pain within hours. Sometimes a new medication, like an antibiotic can cause the same extreme sandpapered burnt feeling, also.
And I've had to restrict the variety of my diet even more. For example, I was able to eat white sourdough bread but realized it was making me flare a bit more red with more pain. So I cut it out for 2 weeks, then two days ago I started eating it again, and last night had a worse than usual night and woke up this morning and finally took a look in the mirror and I'm red, my neck and face and back arms are sore. I'm experiencing the sort of heat and that a block of chocolate, or a fresh tomato or some rye bread, etc used to cause.
I'm hanging out until August 20 when I see the doc who diagnosed my EM so that I can get some medication for it -- time to try the medication route and hope I get some relief.
I suspect that by cutting out so many good, healthy foods so many years ago on the advice of one of Australia's very best hospital's 'allergies and intolerances clinic' I have made myself more sensitive to foods and meds than if I'd just continued on my 'nomal, healthy eating' way of living that I used to follow and enjoy. It's so confusing and I'm so tired and I'm so sick of eating this dreadful diet that has to be followed to the letter to be just healthy enough (I'm not the only one, the clinic is now experiencing a lot of backlash from other hospitals and doctors and allergists, (not all, but some), as the diet is seen as being too restrictive and often completely unnecessary unless you have true allergies to foods). The clinic is also conceding that restriction of foods can, in some people, make them more reactive when they try to reintroduce those foods into their diet. Which is what happened to me. Plus you would think I'd be a skinny thing but due to a weight inducing medication and the diet which is heavy in white sugar and dairy (in my case I can eat dairy) well, I'm no longer the slender person I used to be.
I guess I'm saying, be judicious about 'diets' to cure. As you may just end up making things worse in a desperate attempt to make them better. As has happened in my case. Eating used to be about fuel and pleasure for me. Now it's eating the same very limited variety of food day after day (thank god for vitamin tablets) and don't even think about eating out. For example, on Christmas Day at my sister's place I took my own egg and lettuce sandwiches (on 'allowed' bread) and ate that while my family a very yummy looking Christmas dinner. There was not one thing I could eat on the table if I did not want an intense flare. I certainly did not want that because the day before I'd had an intense flare that turned out to be caused by the new generic version of a medicine I'd always been used to taking. They'd taken the name brand off the market and I had to buy the generic brand and one of the excipient ingredients (neither my allergist or myself was able to pinpoint which ingredient) in the generic form caused a flare. Luckily I was able, after a month of my research and the knowledge of my allergist, to come up with another generic version I could tolerate.
I've hated having to follow such a restrictive diet for 10 years. It means never eating out, always having to be very careful what I cook at home. Most people can't successfully stay on the diet. It was just that the pain of EM was so horrible that I stayed on the diet. Now I get the pain and I still have to stay on the diet because when I go up it makes the EM pain even worse.
That was the reason for finally looking for a forum for EM. I'd run out of options. Until I see my EM specialist in August and we start talking about trying medication for it.
It was a bad night last night. I'm fascinated how I can wake every hour or two 'on fire' until about 5 or 6 am when I wake up too cold - it's winter here in Australia -- and have to pull a small blanket over me to feel warm enough to fall back to sleep. Crazy stuff. I wouldn't believe it if I'd never experienced it.
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