Discussions By Condition: I cannot get a diagnosis.

4-hour feeds prevent pain and fatigue

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Mountain Goat
  • September 24, 2008
  • 09:09 AM

4-hour feeds prevent pain and fatigue

But I really want to know what is really wrong with me.

Keeping to my frequent feeding regime, I can (and do) climb mountains, go on canoeing expeditions, dig a garden, go up ladders to paint the house and so on. If I deviate, then whatever part of my body I have been using will subsequently be the source of joint pain, muscle ache and total fatigue. It then requires not only food but rest of some 24 hours or more before the symptoms subside.

If I have been using a keyboard, then my wrists and fingers are so weak and painful, I cannot switch on an electric light switch, flush the toilet or hold a pen to write.

If I have been walking, then the knees and ankles will fail and I will be unable to walk without holding on to furniture. If I have been going uphill, up ladders or stairs then I will not be able to get out of a car or a chair.

If I have been lifting, say, sacks of cement, then my back and shoulders will be in agony for days and I will not be able to look over my shoulder to reverse a car.

If I have been standing, preparing food for a dinner party, then the soles of my feet will be painful and my wrists too.

I can lie in bed, noticing slightly swollen and extremely tender bones, like ankles, knees and fingers, taking some while to get to sleep.

A couple of years ago, I was helping out at an outdoor activity centre, where all I was doing was driving a minibus and filming kids in their outdoor pursuits. Trying to fit in with the meal-time schedule of the centre took its toll. Even though I brought my own supply of food for them to re-heat for me, I ended up eating later than would normally have been the case. That night I really struggled to climb the ladder into my upper bunk. When I had to get up in the night, it took more than half an hour of exhausting acrobatics to get back into the bunk. I had no strength in the legs at all and pulling myself up by my arms was tiring and slow, taking about five minutes for each rung of the ladder.

I have had these problems for over ten years and have had numerous blood, urine and other tests and have been told that I do not show signs of cancers or diabetes. I would visit the doctor or the hospital for whatever part of the body was afflicted, as in those days, I knew no cure yet alone, what I discovered later, that the problems only seemed to develop if I had gone more than about 4 hours without food. When I communicated this to the doctor, I was told I must have the ***** syndrome (named after me) and that was that.

I am aged 64, about 180 lbs, 6 ft tall, slimmish build. My BP is quite low, on waking being about 120/76 with a pulse of 44, going up to a normal resting/light activity 126/80 and a pulse of 64. I have been lactose and milk protein intolerant for over 50 years and gluten intolerant for about 14 years. I pass out on mono-sodium glutamate and I have a sulphonamide allergy, discovered soon after birth. I take no medication except for calcium supplement and even avoid pain-killers, even though there is one available which is gluten and lactose-free. I don't smoke nor do drugs. I have been caffeine-free for twenty years. I have between 1 and 3 glasses of wine daily. I lead a fairly active life (when thus able so to do). I am a carnivore. I drink several litres of water daily. My wife and I have a good sex life although our activities are down to just a daily session, instead of much more frequent several years ago. Even so, I believe that we might be more active than many folk of our age.

My normal diet is as follows:

I wake up some time between 1 a.m. and 6 a.m., depending on how late and how large the previous evening's dinner was. I then have my first breakfast. If I wake up before those times, to urinate, I will usually get back to sleep easily. If I wake for my first breakfast later than 4 a.m., I usually have a mild headache, which disappears after the first breakfast, which is typically a bowl of gluten-free corn flakes, with half a banana and chocolate soya 'milk'. I then stay awake for up to an hour, before going back to bed and sleeping further.
My second breakfast, between 07:30 and 09:00 is something like 3 hash brown patties and stewed steak / bacon & eggs / smoked salmon, which takes about half an hour to prepare, during which time, I avoid serious physical activity. Sometimes, immediately after this meal, I crave and eat some chocolate marzipan bar that is OK for me to eat.

Lunch is around noon and is something like:

125g of poached salmon with 75 g of rice
or
6 oz of gluten-free beef burger (pattie, no bun) with 130g of french fries

My late afternoon snack could be gluten-free, dairy-free meat pâté with gluten-free, dairy-free toast or crackers. If I had a later and larger lunch, I can go through until dinner-time, provided I am not engaged in strenuous activity.

Dinner is my main meal of the day and can be anything from one large course to seven or eight courses, particularly if we are entertaining. The main course will be meat or fish with vegetables and a large portion of carbohydrate like rice / potatoes / sweet potatoes / corn on the cob. Other course will include other meats, fish, vegetables and fruit.

Even after a single course dinner, I often doze off for a while. I go to bed between 10 and 11 p.m.

That was a description of a typical domestic schedule. If I am in the mountains, I need to eat at least every 3 to 4 hours - a mixture of protein & carbohydrate. If I am a sight-seeing tourist, then I keep my focus on where the next restaurant will be, in order to ensure that my diet can be accommodated. When staying away from home, I travel with my own breakfast and snack rations as well as emergency supplies like crackers, in case the restaurant cannot provide a suitable carbohydrate (since many french fries are wheat-flour coated, for instance.)

It can be slightly anti-social, having to eat more often than those around me, participating in identical activities but I have a very understanding wife.

I never feel depressed and am actually a very happy and contented person.

I wonder if anyone else has similar symptoms but has never made the connection with frequent eating being a preventative measure.

I would dearly like to understand the mechanism of what is really going on with my body. I used to be able to climb all day with minimal rations, but now, after about two and a half hours, my pace slows right down, awaiting my next meal. If I wait until hungry before I eat, it is usually too late and I will suffer accordingly. The pain and weakness will kick in several hours after the delayed meal has been ingested - like the damage was already done, even though the symptoms were not yet in evidence. When I keep to my frequent eating regime, I can do lots of manual work, strenuous recreation - say carrying a 60 lb pack for a 14 hour hike and so on. If I neglect the regime, I suffer considerably & thus incapacitated have to rest whilst others go out walking.

Any ideas anyone?

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