Burning (hot) feet syndrome - Erythromelalgia (EM) - cause of insomnia

For many years I have barely slept due to burning hot hands and feet.  It wasn't that I couldn't sleep but that I could not STAY ASLEEP  due to discomfort, however exhausted I was.   I discussed my symptoms with several doctors but none was interested in finding out the cause only in giving me sleeping pills!  I believe they thought it was due to hypochondria, other than my current doctor who suggested allergies.   Functioning properly without enough sleep for years is almost impossible and soon it became a chronic condition, sometimes even happening if I lay down during the day, although my symptoms normally only occur at night. At first they would get hot in the early hours of the morning but as the years went by they began earlier and earlier, sometimes even within an hour of going to bed.  Sometimes it would just be hot feet, sometimes just hot hands.  Other nights both would be hot, with varying degrees of severity. Your body loses heat after you go to sleep and the heat is supposed to exit your body through your extremities but in my case the heat just collected there !  Then one evening in late March this year (2016) I noticed a new development  - the skin around my big toe on one foot was bright red.   I thought at first this was due to wearing new shoes, but the following night when I checked again it seemed to be worse.

In the morning I googled this new symptom and came up with an article written by Jay S. Cohen, M.D., entitled "Erythromelalgia".  I read it with interest as it described my symptoms, although in my case I am fortunate to have no pain, just an unpleasant tingling sensation. Dr. Cohen suffered from this extremely rare disorder himself and spent many years researching it and giving advice to sufferers.  Apparently treatments that relieve the symptoms are similar to those that help with migraine. It is a form of neuropathy and more common in women than men.  Even though I had no pain I decided to follow some of his advice and the same day went to the health food store to buy Willow Bark Extract and Feverfew.  I also researched to find which foods I should avoid:  those that cause dilation of the veins (vasodilation)   A lot of the things I had been eating in my attempts to boost my immune system were entirely wrong.   One of the worst is garlic and I had recently begun to swallow chopped garlic with milk !    I was also eating a lot of leafy green vegetables.  No wonder I had been getting worse !  Dr. Oz recommends eating GOMBS (G: greens O: onions M: mushrooms B: berries and S: seeds) ) for good health, so I had been following that advice and the first three items are vasodilators.   Of course, foods that cause dilation of the veins are good for your heart and circulation but not for me !  

Starting with lunch, I modified my diet and that night my hands and feet were much cooler.   Since then I've improved each night, except for one evening when I came home late and hungry and ate something that caused a relapse.   Now, two weeks later I seem to be almost symptom free, though I am still experimenting with what I eat.

It is so scary when you don't know what is causing your body to rebel, and  are afraid not only of eating but being unable to sleep.  Every night I'd hope that I'd be alright, only to wake a short while later in extreme discomfort. Even now that I've improved, after so many years of insomnia I am still having trouble sleeping through the night. When I think how many years I have suffered with this, it brings tears to my eyes.    It has impacted my life in so many ways.  For instance I never schedule an appointment in the early morning for fear I have a bad night and want to sleep in.    I also rarely do anything in the evening other than stay home, so that I'll be really relaxed at bedtime.   In addition I have been nervous of eating, especially in the evening, as there seemed to be no apparent rhyme or reason to my reactions.   Every now and then my symptoms would ease and then would come roaring back.   The hot hand nights were always a disaster with only pills (causing various side effects and fragmented sleep) which helped for about 2 hours, though they did seem to cool me off, or alcohol, which caused depression in the morning.    I have a large envelope containing tips for getting to sleep.  One thing of interest I learned is that most alcoholics start drinking due to insomnia. 

Here is a list of items that seem to make my problem worse, although I am still experimenting.   You can also look at Dr. Cohen's site to find his tried and true suggestions.   Thank goodness a doctor developed this disorder, otherwise we might still be in the dark, if the attitude of my doctors is anything to go by !

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Massage and essential oils ! (surprise !!)

Foods/supplements with nitric oxide, niacin, nicotinic acid. 

Principally - garlic, but I am avoiding most of the onion family for a while.

Leafy green vegetables (in my case I seem to be worse with broccoli and Swiss chard), beets, celery, sprouts

Melons

Tomato sauce (okay with fresh tomato)

omega 3 (salmon!)

Sugary foods and alcohol

hawthorn, dark chocolate

 Foods with L Arginine - red meat, chicken, fish, cheese, milk, eggs, almonds, walnuts and cashews

I am not cutting all these out completely except garlic - just less of them

I take a tspn of powdered magnesium and drink a little tumeric tea (which I make) most days.

Also taking feverfew and willow bark (but will stop every now and then for about a week as they have blood thinning properties).  There is also Phosphatidylcholine that Dr. Cohen recommended that I might get soon.

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Even before finding out about erythromelalgia I had figured out it was caused by diet.   I had hot feet for years but my hot hands (much worse) began after I came back from a trip about 7 years ago and found my peach tree covered in fruit.   I was eating several a day when my hands began to bother me.  My first thought was that it was a carbohydrate/sugar problem so I changed my eating habits.   Over the years I had also noticed that broccoli, onions and salmon caused symptoms, but not every time.  Alcohol definitely makes my hands much worse.    Two swallows and I'm a disaster !!