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 !! 

Some of the More Interesting of the Family Letters (when people actually wrote real ones !!)

1)   Oliver Family - letter to my mother from my grandmother dated May 24 1946. She was living in Bexhill, Sussex at this time.  Unfortunately I never got to know this grandmother and only recall meeting her once -  I spent a day at her house when I was about 5 or 6 years old.   My mother was annoyed as I returned home with my hair cut short.    I also remember getting some lovely new dresses !

"Dear Lesley

I am indeed grieved to hear that all has gone wrong again.   I did so hope and pray that you and John would find happiness together once more - but I suppose it was not to be.   He and I had words about it some days ago.   I felt that something was wrong - because of John coming over here but could get nothing out of him.   It was only when I received your letter that I knew the true facts of the case.   In view of what you wrote I think you are taking the best way out.   I've told John what I think of the whole incident. 

I do hope you won't let all this unpleasantness interfere with my friendship with you and my affection and interest in the children, and perhaps later on - you and they will come over and see me.   I am none too well and these things don't help me.

My love and kisses for the children,

Yours affectionately.   G.G. Agar

As the result of what I said to John, he left here very early Wed. morning."

2)   Letter from Pamela Barnard (undated)

"How I wish you and I could have an afternoon - or even day - together quite alone without any interruptions and sit down at a large firm table and spread out all the letters, photos, notebooks and pictures.  You could ask me questions and we would discuss everything.  So impossible to do it by letter and there are so many things I could tell you that I'm sure would interest you.  You know our ancestors came from Wiltshire and Berkshire.  There are still any amount of Neates in that part of the world.  My grandmother lived in the village f Froxfield near Hungerford, Berkshire when she was a child."

She had sent me a family tree and had this to say about it:

"I got the original from a woman who had married on of the Wilsons and who was living in a flat in Worthing.  She had met him when working in a draper's shop in Crouch End, North London, belonging to the Wilsons* and I always meant to get in touch with them as they knew so much about the family but I hear they have given the shop up and it's being pulled down, which was quite a shock.  I would very much like to contact them and ask them to let me copy anything interesting.  The James' used to come and see my Grandmother, Hilda, Howard** etc.   They had and very likely still have, a leather business in the City of London.  They made handbags, suitcases and various things and used to give my Grandmother Christmas presents made of leather."

*One called Jane Wilson after her grandmother.

** Howard - unknown to me.

Those Were The Days !

Arthur Alison Barnard's wedding to Hilda Stopford

Arthur was a barrister at law, a cricket blue at Cambridge and a well known amateur boxer.   There is a quotation from an autobiography, below, which mentions him.

His marriage to Hilda was featured in a society magazine called "Madame", dated August 11, 1900 under the title "Fashionable Weddings".  (The advertisements in the magazine are amazing:   Landaus and other carriages, belted corsets, "a natty frock of foulard").   

The first wedding featured on that same page was of Lady Randolph Churchill, the widow of Winston Churchill to her second husband, Mr. George Cornwallis West, only son of Colonel. W. Cornwallis West of  Ruthin Castle.  Even though there is no connection, I will quote the details of their wedding, just for historical interest:   "The church was beautifully decorated with palms and crimson gladioli and there was a beautiful musical service....   The bride, who was given away by the Duke of Marlborough, looked exceedingly well in her wedding gown of pale blue chiffon over blue glace silk.   The skirt was ornamented with innumerable tucks and insertions of string coloured Cluny lace and round the hem there was a deep flounce of the same lace headed by a band of insertion.   The bodice was of tucked blue chiffon with a bolero of Cluny lace and a vest of white chiffon crossed by draperies of pale blue silk, fastened with a handsome turquoise and diamond ornament.   With this charming gown the bride wore a toque of tucked blue chiffon, the brim veiled with ecru Brussels point applique lace and finished on the left side with a cluster of white roses.   A soft plume of blue and white marabout completed the trimming of this pretty toque.  Lady Randolph Churchill carried a prayer book bound in white vellum and a loose bunch of white roses.  ... After the ceremony a wedding breakfast was served at the residence of the bride's sister...the bride and bridegroom leaving early in the afternoon for Broughton Castle lent for the occasion by Lord and Lady Algernon Gordon-Lennox.   The bride's travelling dress was of blue French silk canvas, the skirt ornamented with long lines of hem stitching and the front of the bodice arranged with a very beautiful piece of antique rose point lace, which was included among her wedding presents.   With this she wore a toque of blue chiffon, trimmed with mauve and blue shaded convolvulus...."

 

Hilda and Arthur's wedding was celebrated at St. Andrew’s Church, West Kensington on August 2, 1900.   The bride was living at 38 Castletown Road at the time.   "The church was prettily decorated with palms and white flowers and the service was fully choral.   The Rev. John Colyer, assisted by the Rev. William Bate, officiated.   The bride was given away by her cousin, Capt. Walter J. Stopford, C.F.  She wore a dress of ivory duchesse satin, draped with some beautiful old lace.  The bodice was arranged with a picturesque fiche of mousseline de soie, whilst the sleeves and yoke were of chiffon, embroidered in silver.   Mr. H. W. Barnard (Walter), brother of the bridegroom was best man, and the bridesmaids were Miss Hendy (Nellie-half sister), sister of the bride, Miss Barnard (Lillian), sister of the bridegroom, Miss. F. W. Hendy (Florence Winifred who later married George Barnard), cousin of the bride, and two little girls, Miss Honor and Miss Irene Rawlinson.  The elder bridesmaids had dresses of white satin voile over silk, trimmed with duchesse lace insertion and chiffon.  They had black chiffon picture hats trimmed with roses.   The little girls were dressed in white muslin and lace over pale blue silk, blue sashes and white picture hats.   There was no reception after the ceremony and the bride and bridegroom left early in the afternoon for Sussex.  The bride's going away dress was of pale blue cashmere, trimmed with white silk and ecru lace and worn with a watteau coat to correspond.   Her toque of black chiffon was trimmed with sequia net and pale pink roses."

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From the autobiography "Leaves From My Unwritten Diary" of Sir Harry Preston.

"I remember Count Vivian Hollander, the well known boxing and wrestling referee had a bull terrier called "Standish Hero", which he left behind when he went off to the war.   One evening there was an air raid and the family ran down to the billiard room. But not so the dog; he stopped behind to fetch the dressing gown belonging to his absent master.  "Standish Hero" died during the war.   He was left behind at Farnborough, and one day he fell ill.  He dragged his master's tunic from his room, lay down on the tunic and simply passed away.  Hollander wrote to tell his friend, Mr. A.A. Barnard, who was then in the West Indies, the sad story.  Barnard, a barrister, and a well known amateur boxer, replied telling Hollander a story about the dog, which was new to its owner.  Barnard had met a reformed criminal, who had told him of the various burglaries he had committed, and how he was one of the gang who had robbed Sir Claude Champion De Crespigny outside the National Sporting Club. 

"We was going to burgle Hollander's house after that", said the crook, "But we didn't - we had been watching the house and found he was away every Monday night." (Hollander was on the Committee of the National Sporting Club then, and Monday night was our fight night).  "One day outside we saw that ruddy big white dawg of his 'ave a scrap, and after that we didn't fancy the job"

(Sir Harry Preston was proprietor of the Royal Albion Hotel in Brighton, England and owned the Royal York, which is the original of "The Royal Sussex" in Arnold Bennett's novel "Clayhanger".  The housekeeper in that book is Miss Beatrice Collins, Preston's sister in law and the pageboy, Preston's valet.)
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The above is taken from a letter written to me by Pamela Barnard, daughter of Arthur and Hilda Barnard.