I wondered if anyone else here developed EM from nutritional neuropathy? My specialist (I got his name from this website) in NYC a knows that my EM is secondary to nutritional neuropathy. I am experiencing some change in symptoms and even if you are not suffering from EM because of the same condition I wondered if anyone can relate:
I used to not be able to tolerate hot baths but. Ow at the end of the day when my lower legs are aching and my toes are burning! I feel so good whe I get in the tub and immerse both legs including my feet.
Also, on very hot days ( today it as 96 in NYC a with real feel,of,over 100) I can walk and the soles of my feet do not burn My feet always feel weird and painful. If my body temp is cool then my feet really burn. It is as if I have to be hot all over and then. Y feet feel better.
I thought I was a vasodialator but I think. Maybe my issue is that I am a vasoconstrictor. When’s wasn’t eating, I was always freezing and I had fingers go white and the soles of ,my feet were blue before my toes went numb. But now, three to four years later, I am so confused by my symptoms. And it is all,driving me crazy. I can’t deal with it much longer, I don’t want to go into why all this happened but it is enough to,say that I was abused as a child and ended up with an abusive doctor and boss. I guess I let people abuse me because I am a people pleaser and I was afaid to,stand up for myself and oosay NO. I can say NO now but it is too,late to,save me from the hell of EM. So what’s the point?
Any advice or information you canF share is welcomed.
Hello. I have not heard of EM from nutritional neuropathy. I will read up on this. Thank you for bringing your post up. I will be going to the Mayo clinic in Mn. in a few months. NO apt yet but it’s in works. I am writing down different things that I read and I will bring this to their attention and pick brains. I’ll report back.
I started a few years back. Couldn’t go into my hot tub. Was fine in it but when I got out not ok. Everything hurt. Full body. Feet and hands red burning. Then it was the feet red hot at night. Then it was hands and feet and now bulging veins when I go outside that look scary.
I also have Lupus and Reynauds. A bunch of other stuff too but not important to this post.
Something funky is going on with auto immune for those that have it. Something funky is going on with EM in the body. It’s the body malfunctioning.
Have you tried different foods that are actually helping you? I am starting to keep a food log daily and see when it flares most. See if there is anything in common.
As far as what’s the point? There’s always a point. The fact that you came on here and might have saved a persons life or agony by sharing your experience ! The point is we have breathe in our lungs. We are alive and we will do everything we can do to find something that matters and make it our point to stay strong.
Come on here where people share your same heartache.
Cold makes me better but my bones ache when cold. Warm makes the hands and feet flare.
Don’t stop short of an answer. Continuing reaching out and researching. It’s the only thing we have right now.
I hope today brings you peace and that you feel a little better knowing others can relate some.
They think my EM is from a reaction to a SSRI antidepressant (started the day after taking Paxil). I am also suffering from malnutrition - lost over 16 lbs from being on three rounds of antibiotics for an ear/sinus infection. My dr thinks once my nutrition improves that my body will start getting stronger and should be able to fight off the EM.
I don’t know anything about nutritional neuropathy - do they think once your nutritional levels are better that your neuropathy will get better, which may ease the EM?
Hi JMK423,
When I was starving I ate away the nerves in my feet. The first thing was that my toes went numb. No one really understood it and I was also at the point of collapse so. I one - not even doctors - paid attention to my numb toes. I was stil in a bad spiral. This analysis is all done in hindsight but I damaged my autonomic nerves in my intestines also ( not just those that regulate body temperature) because I could not absorb anything that I was trying to eat. It would go,straight through me. I saw three gastroenterologist and they could not find a reason. Nothing was wrong with my colon ,etc.
it’s wasn’t until 8 months later that the burning started- the EM started. They found that I had chronic low sodium and they think that the low sodium affected my sodium voltage gates and brought on the EM. That along with my nerve damage in my feet/toes.
My EM doc diagnosed the cause of mynEM as nutritional neuropathy. It takes a long time for nerves to heal if they ever will. I have stabilized my weight. Gained 30 needed pounds and have felt well for two years but I cannot get my feet to stop burning. They have improved very much. So I have to keep,hopeful. It is just hard thinking that I brought this on myself. But I know it happened for a reason. It made me change a lot about what I would or would not take from people. I was a classic people pleaser. To my own detrement. Now I stand up for myself and tryntomtreat myself with compassion. I have good days and bad days. But I am. Hopeful you have to be hopeful that you will see an end to the EM
Hi, Jordy. I hope this message finds you feeling better.
Good for you for putting on the 30 pounds. I’ve struggled over the past four months - didn’t have much of an appetite. Did manage to gain 10 pounds but have another 10 to add. How did you gain the weight? I have so much anxiety about putting on weight and I think that’s making the EM worse.
Has your EM gotten better since putting on the weight?
I ate lots and lots of small meals during the day like one thing at a time. I am weird in that I only ate healthy things. I had “Boost” drinks for a while. I have to have a routine and I ate things like string cheese, cottage cheese, hard boiled eggs. Kashi cereal. Fruit, whole grain bread, vegetables, almonds, yogurt, chicken breast whole grain pasta.
I just knew that I was very sick and that the only path back to health was by gaining weight and I wanted to stop the pain. Yes the EM has improved slowly as I try to undo the nerve damage. It is worth it. You have to just let go. Ask yourself which is more important- to stop the pain or to fear the weight gain.
My anxiety is not about gaining weight - I WANT to gain the weight. I stress about making sure I’m eating enough calories every day. I am writing down everything and totaling my calories. My sister tells me I shouldn’t do that. But if I don’t, I think I’ve eaten enough for the day when I haven’t.
When I first started out I was only able to eat around 1600 calories which is enough to keep me where I am without losing anything. Now that I have a bit of an appetite back in pushing 2000-2200 calories. How many do you eat? I also drink a smoothie for a snack every morning which includes protein powder. My dr told me to push protein.
I’m five feet four inches and yesterday at the Drs office I finally hit over 110 Been a long time but I’ll take 110.4 over the 100 lbs I was.
I was eating a total of about 2200-2500 calories. I was told that the best for nerve damage too is protein but also whole grain carbs and good fats. If you can eat whole grain bread with Almond butter (almonds have magnesium) that would be good. I know that the carbs are supposed to provide the energy to help the body heal itself. Whole grain pasta is also good. I had low sodium so I eat a lot of cheese for salt and protein too.
Does this help? If you can deal with it eat things like ice cream, rice pudding whole grain muffins. I just can’t eat those things cause of things from childhood- food games with abuse
J
How are you guys now? My feet started burning when I was at my worst with my ED. I’m at a healthy bmi now but don’t eat enough. I do supplement and hope to recover fully from my ED.
Hello! Please check my topic, I think I have similar issue from my history of dieting (high protein, low carbs fad diets) followed by occasional binge eating
I’ve been on extreme diets – everything from super low fat, strict vegetarian (nearly vegan) for nearly 8 years – all the way to high fat, low carb, keto (nearly 100% carnivore) for 4 years. Keto and low carb seem to have helped a bit, but definitely not cured my EM.
Been a long time but I’ll take 110.4 over the 100 lbs I was.