HI All. Have been dealing with progressively worsening fasciculations and muscle cramps for > 2 years now, with intermittent cramps/fasciculations > 5 years . About a year ago the fasciculations became constant in the lower extremities (and remain constant).
Cramping became an issue during prolonged exercise (skiing, mountain biking, climbing, > 10Km mountain hikes/scrambles, etc...). Although the cramping continues to be somewhat post exercise induced, it continued to worsen as the weeks rolled on.
Having undergone the various work ups over the past year, x2 EMG (both abnormal), spinal MRI (normal), DNA genetics (normal wrt mnd), my neurologist was/is confident with a working Dx of CFS.
This past year the cramping and weakness became a severe obstacle limiting back country skiing, mountain biking, multi day mountain back packing trips etc... He prescribed mexilitine even though its off label, not approved for cramps in Canada and from what I understand used off label for ALS only.
The cramps unfortunately limited my ability to ski (as they would start firing bi-laterally in the quads with debilitating pain) within 20 minutes of skinning, or even front side skiing I could only do one or two mogul/bowl runs until the day came to a sudden stop and I could barely (and with alot of pain) make it back to the car.
Because the cramps were not consistent (although the fasciculations are 24x7) we decided not to initiate the 150mg bid.
In late winter/early spring of this year (2024) in preparation for completing a life long goal of the west coast trail we began a period of weekly hikes/climbs/scrambles in the Rockies. It wasn't long until the cramps and almost entire body stiffness, not paralysis but more like a feeling severe stiffness and cramping requiring 3x effort, 5x the time to do simple dexterity tasks for the rest of the day, became debilitating during and post exercise.
In discussion with my neurologist I started taking Mexiletine prn on days where I was expecting hard and prolonged exercise. The impact was immediate, the cramps totally went away (not reduced, but gone) within 45 minutes of taking a single dose. This became a game changer. I was successful in training and felt confident to commit to the west coast trail. Because its a multi-day hike (we did it in 7 days), I began (with approval from my neurologist) taking mexiletine 150 mg bid a week before the trip, during the trip and 2 days post trip.
Although I experienced some stiffness, visually disparaging fasciculations (they became the talk of the campfire every night) the cramps were non existent. Not reduced, not better controlled, but simply gone. We are now back home and a week later I tried a day in the mountains without the mexiletine. The cramps, stiffness, slowness came roaring back just like previous episodes. The next week we did just about the same day of exercise and I took the mexilitine with no cramps whatsoever.
Happy to share my experience with others as it really has proven at least for now to be a game changer.
Cramping became an issue during prolonged exercise (skiing, mountain biking, climbing, > 10Km mountain hikes/scrambles, etc...). Although the cramping continues to be somewhat post exercise induced, it continued to worsen as the weeks rolled on.
Having undergone the various work ups over the past year, x2 EMG (both abnormal), spinal MRI (normal), DNA genetics (normal wrt mnd), my neurologist was/is confident with a working Dx of CFS.
This past year the cramping and weakness became a severe obstacle limiting back country skiing, mountain biking, multi day mountain back packing trips etc... He prescribed mexilitine even though its off label, not approved for cramps in Canada and from what I understand used off label for ALS only.
The cramps unfortunately limited my ability to ski (as they would start firing bi-laterally in the quads with debilitating pain) within 20 minutes of skinning, or even front side skiing I could only do one or two mogul/bowl runs until the day came to a sudden stop and I could barely (and with alot of pain) make it back to the car.
Because the cramps were not consistent (although the fasciculations are 24x7) we decided not to initiate the 150mg bid.
In late winter/early spring of this year (2024) in preparation for completing a life long goal of the west coast trail we began a period of weekly hikes/climbs/scrambles in the Rockies. It wasn't long until the cramps and almost entire body stiffness, not paralysis but more like a feeling severe stiffness and cramping requiring 3x effort, 5x the time to do simple dexterity tasks for the rest of the day, became debilitating during and post exercise.
In discussion with my neurologist I started taking Mexiletine prn on days where I was expecting hard and prolonged exercise. The impact was immediate, the cramps totally went away (not reduced, but gone) within 45 minutes of taking a single dose. This became a game changer. I was successful in training and felt confident to commit to the west coast trail. Because its a multi-day hike (we did it in 7 days), I began (with approval from my neurologist) taking mexiletine 150 mg bid a week before the trip, during the trip and 2 days post trip.
Although I experienced some stiffness, visually disparaging fasciculations (they became the talk of the campfire every night) the cramps were non existent. Not reduced, not better controlled, but simply gone. We are now back home and a week later I tried a day in the mountains without the mexiletine. The cramps, stiffness, slowness came roaring back just like previous episodes. The next week we did just about the same day of exercise and I took the mexilitine with no cramps whatsoever.
Happy to share my experience with others as it really has proven at least for now to be a game changer.
