My EM - is it is? (few doctors in Russia know about EM so I have no official diagnosis)

Symptoms and Treatments
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Hello! Sorry for my poor english. I am from Russia and my symptoms started at 2019 with red hands and soles - sometimes these flares were asymmetrical - only to one hand or to one sole.

I have a long history of eating disorder - I also have a phobia of having diabetes. In past, I constantly checked my blood sugar, restricted carbs and followed high-protein diets + I am very anxious person. I think this is where all my EM issues started.

Now a have several triggers for my flares - stress, exercising (aerobic training), heat, some food as well - but I cannot tie my flares to any specific foods, I think that maybe protein and fatty food can trigger it… I don`t know. I can have flares in the moment of eating and then it stops, while sometimes flares start 1-2 hours after eating the same food!

I have already checked a lot of things - my brain, spinal cord and vertebrae, abdomen scan with contrast, 5-HIAA in urine, allergies, celiac disease, AI diseases, labs, liver function tests, A1C and so on and on - everything came back normal.

I have slightly elevated HDL levels and total cholesterol,and my C3, C4 proteins are always low, but doctors cannot find the reason why…

Occasionally I have low white blood cells count.

My flares got worse in the evening.

I have burning not only in extremities, sometimes in my chest, between scapulas and scalp as well.

Surprisingly, I don`t feel much of pain - only warm anf slight burning - but it is bearable. The main source of discomfort for me is swelling that comes with flares - when flare occurs it becomes difficult for me to write, tape a message on my phone and do things that require delicate movements with my fingers

I don`t have an official diagnosis. I met only one doctor here in Russia - rheumatologist, who have heard about EM … Other doctors have no idea about my condition and prescribe anti-anxiety medications only. I just want to figure out - is that truly EM or something else?

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A vitamin B12 deficiency can cause nerve damage that could trigger EM in an individual susceptible to it. However, if you were consuming a high protein diet with a lot of animal products, it’s unlikely you would have incurred a B12 deficiency. It is conceivable though that disordered eating could contribute to the onset of EM.

Your images and stated triggers are mostly consistent with EM. It is somewhat unusual to say you feel full body burning.

You might want to also consider POTS as a potential diagnosis (Postural Orthostatic Tachycardia Syndrome).

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Hi Vinny,

Your pictures, triggers along with the fact that it worsens at night (when the nervous system transitions from sympathetic to parasympathetic) seem to point to EM.

To add to Carter’s Vitamin B12 comment, I had a Vitamin D deficiency (was at 19 ng/mL with the range being 30-100 ng/mL) so I started taking 5,000 IU once a day and the following month my value was 47 ng/mL so checking vitamin levels could be worth it.

There are primary and secondary forms of EM:

  • Primary EM has a genetic component, do others in your family have similar symptoms? If a mutation is found in your SCN9A gene, a sodium channel blocker such as Mexiletine can potentially help.
  • Secondary EM means it’s secondary to another disease (Myeloproliferative, diabetic neuropathy, autoimmune diseases etc…) and tackling the primary disease may put EM into remission.

Here is a research paper provided by site member JoeSchmoe which summarizes EM and it’s treatment options (which I shared with my doctor): Helpful Cumulative Review Paper

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I don’t know everything about your case but from your information it seems as though you do have EM that maybe surfaced through disordered eating causing some metabolic disturbances. You’ve had a good workup and it is definitely good news that your labs are normal. I would suggest taking a look at Dr. Jay Cohen’s guide to EM (I posted them in their own article a year or so ago). He discusses natural supplements and herbs that are good places to start. They are generally low-risk and safe but running it by your primary care doctor would always be a good bet.

Also, the two lab abnormalities you have are not bad. HDL is actually good, you want it to be higher than the average. HDL is the cholesterol that removes cholesterol from your tissues and vessel walls. Your low carb diet could be helping this since your body needs to use fat stores for energy instead of sugars. Secondly, white blood cell counts can fluctuate quite a bit but since you have a history of disordered eating, mild deficiencies can be expected but I wouldn’t expect it to lead to EM.

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Thank you for your answer! I have already my B12 levels checked - normal.

I read about POTS and found some similarities (It always get worse after warm shower, sometimes I have blood pooling in my extremities (not EM flares, it is something different - I have blood pooling in my legs and arms after shower, exercising, in hot environment, but I have my heart checked - nothing special about it, normal … ) , but I have no problems with blood pressure or heart rate regardless of posture and it fits with the activity level … Doctors say my improper blood vessel regulation has it roots in my strong anxiety problems and tell me they see no connection with food, because labs don`t support my claim about unhealthy diet

Thank you a lot again, I appreciate your help)

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Hello, kost1982! Thank you!

I have B12 checked, it came normal, and I have checked autoimmune, diabetes (sometimes I have severe blood sugar spikes after eating even small carbs portions (up to 12 mmol/L after food), but I tried different diets and exercise regimen throughout the year and checked A1C, always 5.3% regardless of these spikes and regardless of what I eat or how I exercise (no difference in 5km jogging every day or just no exercise at all) :woman_shrugging:) . I also checked myeloproliferative - nothing here.

I am not sure if they do SCN9A gene mutation here in Russia and if , but I will try to figure out.

Thank you a lot once again))

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Hello, joeshmoe! Thanks for your reply!

About HDL, yeah… but because it is high (3.0 mmol/L), it makes my total cholesterol 6.0 - 7.5 mmol/L sometimes … LDL is in normal range though. Exercising helps lower total cholesterol to 5.5-6.0, but I see no connection with EM now… About WBC fluctuations, doc told me the same))

I will check Dr. Jay Cohen’s guide, thank you again))

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What about Raynaud’s? I also have a history of anorexia and developed Raynaud’s when I was about 29. The erythromelalgia started several years later, which I feel like was a result of the severe Raynaud’s. Your hands look like mine. My feet are even more intense than my hands.

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Hello, Monkey! No, I don`t have Raynaud’s, it all started directly with erythromelalgia … I am not sure what triggered that, maybe that was not only my diet, but a combination of diet and exercise with a wrong technique (heavy weights) … or maybe it was just programmed - I mean some disruption (genetically-programmed or just random mutation) in my genes … I have some other symptoms as well - bouts of severe fatigue, burning under my skin (scalp, hands from the shoulder to the wrist, face) and sometimes even in the eyes, nausea, decreased sweating (I used to sweat a lot), blood pooling in the extremities (occasional) … No cues in my labs or scans up until now… Only low complement proteins (C3. C4) but other autoimmune labs are normal…

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Vinny! How are you? Well, it’s good news that you don’t also have Raynaud’s, though I know it’s not very reassuring considering all you’re dealing with. I totally get it.

So, how old are you? How are you doing with your eating disorder? I’m 48 and I was in therapy for like 13 years and my weight is pretty stable, though I’ve been an athlete my whole life and I’m a cyclist, so I burn a lot of calories and have to eat between 3000 and 40000 calories a day to keep me up at 140-145. I’m almost 6’ tall and have an athletic body and I don’t really eat any sugar or processed foods, especially processed carbs, etc.

My EM sucks, and I’m always learning how to manage. The Raynaud’s makes it more complicated b/c I really can’t let my feet get cold or warm, so it’s a constant struggle trying to control something that’s uncontrollable. I also feel like I have a genetic disposition for these vascular issues, though I think so many environmental factors, especially traumas, led to my eating disorder and that created the environment for me to develop Raynaud’s, which, like I mentioned in my post, is severe. I’ve always seen the EM as a kind of rebound from having the circulation impeded when I have Raynaud’s attacks, and then that created a pattern of lack of circulation to too much blood pushing in and pooling in my feet/toes.

Anyway, really nice to know you’re out there and feel free to chat any time. Thank you for sharing what you’ve shared. :slight_smile:

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Hello, Monkey! Thank you, I am fine. How are you? Thank you for your answer as well !

I’m sorry to hear that you struggle with severe Raynauds, but I think I understand what you feel and all these conditions, I mean EM, Raynauds really sucks, you are right

I am 32, my weight is 46 - 50 kg (it was like that for all my life, I think) and my height is 157 cm (I think it is 5 ft 2 in) , but I have some phobia of developing diabetes, maybe it is some kind of obsessive-compulsive disorder - I have an unhealthy urge to check my blood sugar on regular basis (after food), sometimes I catch severe spikes and it freaks me out, so I start compulsive exercising to decrease its levels (even if I have already exercised this day and feel fatigue), and on and on it goes.. Doctors say that my anxiety, not my nutrition causes these spikes (because I dont have them when I am calm and relaxed) and try to assure me to stop and just check A1C sometimes, but I continue to follow this bad habit… I tried different diets, but I am foody and for me it takes incredible efforts to restrict carbs now… I can`t say that I like sweets or processed food, but I adore bread, pastas, dairy (full-fat), some veggies and fruit… So now I try to eat what I want, otherwise diets drives me mad and my compulsive habits skyrocket, I start focusing only on food and it stops me from functioning normally in daily life … ((

During the entire year I exercised every day (jogging, step exercises, etc), but now I was compelled to make a break because of some strange unhealthy unusual fatigue post-exercise (I dont know how to describe it, but it feels as if my body is a big dog on the leash, and I try to pull it, but it dont want to follow), increased burning sensation under my skin and ‘‘brain fog’’ … I hope to start again in february

Now it snows and very cold weather here in Russia (18 C below zero) and I am looking forward for the summer - I enjoy riding my motorcycle, surprisingly, it really helps with EM flares - because of the wind blowing when I ride, it acts like a very good cooling fan)

PS Sorry for my english - I am russian and have few practice here in Saint Petersburg (Russia) … Thank you a lot !!! Please feel free to chat any time as well))

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It sounds like your body simply doesn’t have enough blood glucose and stored glycogen to perform muscular contractions during exercise. If the goal is to be able to move, consuming a large bowl of white rice a few hours prior to activity will vastly improve your performance. (White rice is preferred by athletes as an exceptionally efficient energy source.) I exercise a lot myself, am exceptionally lean, and when I want to turbo charge my workouts I turn to white rice. But again, that’s only if the goal is movement. If your desire is an unhealthy, perpetually low blood sugar, I expect the anxiety associated with carbohydrate consumption will prevent you from following said advice.

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Yes, sure you are right, I am working on it now, but I prefer bread and spaghetti to white rice, I think they are similar in terms of ‘‘energy boost’’))

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That is how my hands look like after 7 km walking. Today is -15 degrees below zero, but it looks like my EM became independent of the weather… I don`t feel much of the pain, but swelling/edema that accompanies flares - it really mess with my ability to perform fine movements with fingers (like cutting the onion in small pieces, writing, typing…) - I need to wait this flare to stop sometimes to start doing some delicate movements with my hands

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Hi All,

There is a striking similarity between your symptoms/onset and mine.

I’m a 36 year old avid cyclist and rock climber and have been for many years. During the spring of 2019 I began intermittent fasting combined with low carb and lost 6-8 lbs and that really helped with climbing… Then I normalized my diet a bit with more carbohydrate intake and in September of 2019 my EM or whatever it is started. I saw many doctors and had all sorts of workups but no conclusive evidence of anything besides the suggestion of EM. SCN9A test came back negative. I even had IVIG infusions for 8 months because I was becoming so numb and lost the ability to sweat (nothing would make me sweat).

In January of 2020 I adopted a meat-based diet and that helped although it was really hard to stick to. I have eliminated almost all spices and flavorings. Since March of 2020 I began “recovering” or learning to manage.

My current “low burn” diet is roughly:

11:00 am 2 softboiled eggs 2 sausage links 1 tablespoon of cooked rice 1 tablespoon mayonnaise

3:00 pm 1 softboiled egg 1 salmon filet 1 tablespoon of cooked rice 1 tablespoon mayonnaise

7:00 pm 1 softboiled egg + steak 1 tablespoon of cooked rice 1 tablespoon mayonnaise

I add some chex cereal for crunch, oranges, berries. Recently I had 5 dried plums and they made me burn for about a week afterwards.

If I have potatoes or bread I burn even worse at night. I’m trying to add in more rice and sometimes a rice krispy treat. I still feel like I’m going to have an “aha!” moment where I find the mysterious trigger and this nightmare ends. I hope that happens somehow.

I hope my weird diet may be of use to some of you. It takes a few weeks/months for it to work. I suppose the upside to this is that during covid you don’t have to come up with excuses to not attend social dinners.

Stay Cool.

D

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Is that really all you’re eating? That diet is not diverse enough to provide all the needed vitamin, minerals, and electrolytes you need. The complete lack of any leafy green vegetables, or really any vegetable besides potatoes, is a huge problem. Your diet is devoid of almost any fiber. Quite simply, that diet is extremely unhealthy.

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Hi, Derek!

Thank you for you answer!!!

Actually, for me high protein dishes , especially fatty food like egg yolks, sausages, red meat, cheese , salmon triggers the worst flares. My preferred food now is various types of bread, bananas, sour cherry, spaghetti, buckwheat (extremely popular carbohydrate here in Russia), green and red veggies, very very small amount of seeds/nuts/oils (they trigger flares in certain amounts). What about protein, I prefer cottage cheese (quark - also very very popular food in Russia and Western Europe) , yogurts and white wish like red sea bass. Sometimes I eat chicken breast, but I don’t like it very much…

I also noticed that canned food (both veggies and canned fish and meet) triggers heavy flares in me

Actually, now I think that maybe in my case it is not food, but my unstable psyche, anxiety and personal tragedy (I have lost my mom 2 years ago) could be the main culprit of my EM and dysautonomia …

PS I checked your posts and I need to say that I also have hypohidrosis! Maybe EM and hypohidrosis / ahydrosis are connected somehow

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Hi Carter,

That is the majority of my intake. I noticed more burning with leafy greens so I’m only having a salad or two a week. I do mix in 3 smoothies a week with avocado and cacao powder. I use diluted pedialyte or dilute gatorade while exercising and after it. Fiber is my only major concern. My energy levels are good and I’m plenty strong on this diet (using cycling and climbing benchmarks).

Blood sugar, blood pressure, resting heart rate (55 bpm) are all good. I’ll have a cholesterol check soon to see how this experiment is going.

I appreciate the concern because it certainly isn’t a traditional way to eat.

D

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Hi Vinny,

I’m glad you seem to have found foods that work. I also notice that when I’m anxious my EM flares get worse (ears turn bright red). Sorry to hear about the loss of your mom.

I do think that the reduction of sweat may be linked to EM as an alternative cooling mechanism. I’m not a medical doctor so this is just conjecture…

I can say for certain that if I can generate sweat around my torso and back it will be a good day! I sometimes wear a cotton tee shirt with a rain jacket overtop while exercising to look for sweat.

Canned food seems hit or miss for me. I try to make everything from base ingredients these days.

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Derek, hello again!

You mentioned about avocado smoothie with cocoa powder! It sounds very unusual and tasty for me! Could you please give a recipe? :slight_smile: