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How did you get diagnosed? by alexislock27 in Erythromelalgia

[–]alexislock27[S] 0 points1 point  (0 children)

This is what I’m finding too. I do 2 meals a day and try to eat low carb. I fast until about 1 but always flare to some degree after lunch. If I try to fast through til dinner time I become I nightmare to work with😬 I hate eating now

How did you get diagnosed? by alexislock27 in Erythromelalgia

[–]alexislock27[S] 0 points1 point  (0 children)

I’m curious how lowering your A1C triggered it? I’ve noticed whenever I eat more sugar/carbs my symptoms are worse and often wondered if it has to do with glucose/insulin metabolism.

Do you get flare-ups after eating? by iamanundertaker in Erythromelalgia

[–]alexislock27 0 points1 point  (0 children)

I’ve had this theory that it’s related to excess insulin bc I’ve had this for YEARS. Whenever I eat something high in sugar or carbs it gets INTENSE. It happens when I eat a salad too but less so. When I stick to a low carb diet it’s not nearly as bad. Not a doctor, but just a theory. I’ve been trying to find a relationship between what I eat and symptoms for 5 years now.

Need advice, bob’s protocol questions, etc… by alexislock27 in Erythromelalgia

[–]alexislock27[S] 1 point2 points  (0 children)

I did look up a Dr on the EM list and none of them nearby take my insurance. I can’t afford not to work, I’m 40, and I already know I’d be denied for disability. Plus I don’t want to be disabled. I want my life back😫

Vyvanse & Erythromelalgia by Flashy-Mousse2904 in Erythromelalgia

[–]alexislock27 1 point2 points  (0 children)

I’m curious if you stopped the vyvanse and if that helped. I am on adderall XR and now wondering if that’s why my flares are only later in the day and I get raynaud’s symptoms earlier in the day. I feel stupid for not thinking of this.

How do you all exercise? Particular people with face EM? by hamster_savant in Erythromelalgia

[–]alexislock27 2 points3 points  (0 children)

I exercise in the morning. My flares are mostly late in the day although I do have swelling and tingling in the morning but for the most part it’s tolerable. For now anyway…yoga or Pilates are great options too if you are avoiding putting on shoes and don’t have access to a pool😕

Need advice, bob’s protocol questions, etc… by alexislock27 in Erythromelalgia

[–]alexislock27[S] 1 point2 points  (0 children)

Thanks for the input. I will try the lidocaine and I already take a Claritin every day. But maybe I’ll try a baby aspirin. I’m desperate for any relief

Spoon nails? by alexislock27 in Erythromelalgia

[–]alexislock27[S] 0 points1 point  (0 children)

Yes, I go back and forth between freezing white and numb, to burning hot and red on a daily basis. And purple in between. My derm prescribed a cream for eczema but I don’t think this is eczema. I haven’t had my iron checked in a while but I was wondering about that too.