Living with Electrolyte Imbalance

All my life I have had cramps I don’t just mean a stitch in the side or a calf or leg cramp so let me describe them. I mean crippling, immobilizing painfull, massive cramps that affect large areas of my body. Some typical scenarios are

a. Laying in bed with my legs outside the blanket first the calf will twitch a couple of times and if I can catch it at this stage and get warm maybe with a heating pad, I might be able to prevent it but usually it wakes me up with a leg straightening pain. The calf muscle, the front of the leg, the thigh muscle, the back of the leg muscles in the ankles, bridge of the foot and toes all simultaneously cramped. I can’t stand I have to roll out of bed, and if it is only one leg and I can force my full weight on the leg and force the muscles to yield, I can make it to the washroom and get in the shower. 5 minutes of as hot a shower as I can stand will immediately start to relieve them. If I don’t stay in long enough I get them again as soon as I get out of the shower and the cold air hits me. If I stay in long enough they will go away and not come back again that night as long as I remain warm.

b. Same as above but with both legs, I have to pull myself along the hall using door frames, bed, stair rails, for support, unable to straighten from the waist up, if I can get in before the stomach cramps get too bad I can get rid of them for the night but it will take 10 minutes, if I don’t get in the shower before the stomach cramps spread, It will take half an hour, by which time my fingers, will be cramped into uncontrollable distortions, and until I get rid of the massive lower legs and stomach cramps I can’t even deal with the hands and arms.

c. It is a warm day and I have been doing physical work. The cramps start in my hands and fingers spreading to my forearm and upper arm. If I get into the shower quick enough to relieve them they won’t spread to my upper body.

d. I yawn, the cramps start in my neck, I can’t close my mouth, they extend into the muscles beneath my jaw and behind the jawbone below the neck and feel like the are inside my neck behind my ears, breathing becomes a problem as the muscles down both sides of my rib cage constrict and there is no position that I can maintain for more than a few seconds that doesn’t cause more back, abdominal, diaphragm, and other muscles to join in Eventually my face muscles, and muscles on my scalp will be involved.

e. I am driving suddenly both legs start to twitch, I have to turn the heat on to my legs as soon as I can and that will allow me to drive another hour or so but then they will both go straight and so rigid I have to open the door an literally fall and drag myself out of the car. This has happened so much that we never go anywhere where there is not chance of stopping and avoid long term driving stints.

f. I am sitting in a chair and suddenly lower abdominal cramps, that spread to my stomach and force me to stand up and forcefully protrude or tighten my stomach muscles with all my strength and hold my breath, to get them to subside, If they subside I may have several episodes in an evening if not they will spread to my arms, and neck as above. Sometimes they spread to my upper and lower back and involve all the muscles in my hips as well.

g. How have these effected my life. I had one doctor who told me that I was one of the few males who could probable identify with the pain of child birth. How often do these cramps occur. Minimum on a weekly basis, but I also have found over my life some of the triggers, that I avoid like the plague.

h. Cold, water can trigger them in my throat, if I drink cold water when I am hot. Other than that I have no problem with cold liquids. Cold water on the skin sometimes triggers immediate cramps in arms and legs, I cannot swim in an unheated pool.

i. Cold air, from air conditioning, or a draft will trigger the deep muscles of the exposed area to cramp.

j. Sugar if I have a sweet drink and drive I can almost set my watch to 90 minutes to cramping. Which will begin in my legs. If for example I have a milkshake when driving from Calgary to Lethbridge by the time I reach 90 minutes on the road my wife will have to drive. If I have a full meal I can make it home (2.5 Hrs) before they start

k. Salt if I have something salty like potato chips it is about two hours to cramping which can begin anywhere but usually starts in my hands.

l. If I do a lot of heavy work building of construction, I may not get cramps for 5 or 6 hours but then they will be everywhere hands, legs, feet, face, throat, even sticking my tongue out, They will be mild at first but then I may be so crippled up I have to drag myself on the floor because I can’t stand or sit, or relax in any position, and get into a shower. Sometimes so painful it leaves the muscles of every affected area sore for days, and during the attack can bring tears to my eyes.

m. How has this affected my life well I am 65 years old now, and I have had them all my life, the longest period I have ever gone without them has been a couple of weeks, and one time 6 years ago a period of almost 6 months. I played sports at the professional level and during that time it affected my performance and life off the field, sometimes leaving me in agony. Some episodes are so severe the tendons and ligaments around the joints remain sensitive and sore for several days beyond the muscle soreness.

n. I was diagnosed as Celiac shortly after I was born premature 2 lbs 14 oz. I have seen all kinds of doctors, specialists, Internists, family doctors, endocrinologists, and had blood, urine, and chemical tests all to no end. We know this there is a electrolytic imbalance, and it appears to be more than one. We have tried high protein diets, low protein diets, low carbohydrate diets, low sugar diets, potassium salt, sodium diets and salt, mineral, supplements and so on electrolytes vitamin, supplements, herbal remedies, NOTHING WORKS. Heating pad sometimes helps but only overall shower seems to work, A cold shower almost kills me with cramp pain, and no muscle relaxants, pain killers, or drugs seem to help.

o. What I would like is a solution which I don’t expect but we (that includes my wife, family, children, grandchildren, all the family doctors, (12) specialists, friends, ) have never seen anything like it or anyone else with a similar condition. So I have been told Live with it. And that is where I am I can do a number of things to bring them on but nothing to stop them. I follow a pretty strict gluten free diet, drink at most 2 or three alcoholic beverages in a year, avoid high salt and high sugar content foods. I am allergic to chocolate, yellow and red food coloring. For the past two years the episodes are becoming more frequent occurring 2-3 times per week. I can’t play my musical instruments or do anything for extended periods without cramps somewhere. I actually feel that someday I may die during one of these episodes,

So if someone there wants a research project or has some ideas contact me.