62/365 – Cramps and myasthenia gravis

As it was World Book Day yesterday, I decided that the ideal way to spend the last hour of my evening would be curled up with my latest novel (The Bone Clocks – brilliant so far). This is a rare treat and as I had the house to myself I thought I better make the most of it. After making dinner, tidying up and packing for my trip to Edinburgh this weekend, I was positively aching to be in bed with my book. So you’ll understand my frustration when I tell you what happened next. Once I had the pillows organised to make a pillow throne, I stretched out, preparing myself for the bliss ahead. Of course, it was at this exact moment that my right leg went into cramp overload. I had to jump out of bed, destroying pillow throne and my comfort levels, to stretch out and make the pain stop. When I thought I had pushed the spasms out of my calve muscle, I got back into bed only for it to happen again seconds later. 

After this, the intimate moment with my book was gone. I was intrigued to see what the link between myasthenia gravis and cramps is. (I’ve finally been able to read in peace on the train this evening)

Cramp as my first sign?

When I was in my sports-playing heyday, playing football and boxing at the same time meant sometimes training three times a day, I would get the odd cramp. Just every now and again when I was in desperate need of some sodium after sweating it all out. But over the years I noticed the cramps getting more regular. By the time I was 23-24, I would regularly be woken up in the middle of the night with quite violent spasms in my legs. 

For years I thought my cramps getting progressively worse was a natural part of ageing, like the grey hairs I pull out and the growing sense of comfort I feel in my own skin. However, I now wonder whether it was my first sign of MG. I’ve almost always been careful to make sure my sodium levels are topped up after exercise – however I didn’t know until recently that potassium is also linked so a shortage of that could also be a reason. 

Mestinon as a cramp enhancer

Apparently one of mestinon’s (one of the drugs I take) side effects is cramping. I can’t say that my cramping has significantly changed since starting the medication. Only on one occasion – after crossing the finish line of the Hackney half marathon last year – did I have a more severe cramp than I’ve had before. My muscles went into complete spasm, I got a sense of what it could be like if my muscles stopped working with the MG, and I couldn’t put my foot to floor. 

From the forums I’ve looked at, the advice is to take potassium supplements. As part of my diet, I’m trying to increase the amount of potassium I eat, mainly with kale, salmon and bananas, but I may discuss the possibility of taking a supplement with my consultant on Monday. 

Do you have MG and bad cramps? Let me know about your experiences. 

8 thoughts on “62/365 – Cramps and myasthenia gravis”

  1. I have noticed foot cramps since being diagnosed. Not sure if it’s from MG or the medication. I do get the cramps now and again which are very painful!

  2. I totally feel your pain! My left leg is generally the leg that cramps (it also happens to be the leg with damage due to two DVT’s). I’ve increased my potassium intake and read B12 may help. Magnesium is supposed to help, but it’s on our ‘if you have MG, it’s best not to use’ list unfortunately! Plenty of fluids and sodium as you mentioned, but I think mestinon cramps can happen regardless but have reduced with increasing the above.

  3. I copied this last week when I was looking into it

    Magnesium interferes with neuromuscular transmission by inhibiting release of acetylcholine. Magnesium competitively blocks calcium entry at the motor nerve terminal. There may also be a milder postsynaptic affect.

    Basically, it can worsen the symptoms.

    I don’t take potassium supplements but have increased it radically through diet and included B12 through a supplement as it’s quite hard to get enough of that through diet (my diet anyway ha).

  4. I am 47 years old and I can happily state that until taking mestinon i have managed to live my entire life without leg cramps. And it didn’t start right off the bat either. I was taking mestinon for nearly 4 months before the cramps set in. Once I was able to reduce the dosage, (I assume because the Imuran was working) the leg cramps quit occurring.

  5. I have myasthenia gravis but the congenital kind which the symptoms are the same and I have muscle cramps when I’m on mestinon so i went off and i still have cramps. Ok one night i found a message board just about leg cramps not anything about mg and the miracle everyone was talking about over there was lavender soap causing INSTANT relief. Well of course that’s too easy & kind of stupid sounding to believe but one by one they tried it and came back telling what a miracle it was. So i bought a bar and was able to try it that very night and OUILA i became a believer too.. it is instant! I keep the soap under my pillow and put it on bottom of foot..sometimes clear under toes. I hope this helps people here. Don’t put water on it just keep it dry. If I’m having just mild cramping in calf or arms the soap doesn’t seem to work but i massage it anyway with the soap and is soothing.

  6. i have myasthenia gravis for five years now this week i went to my sons wedding only to find my self in such great pian cause by cramping in every part of my body ,legs ,ribs back ,arms ,hands ,fingers neck ,and chest it was the never this bad before,it went of and on for two days ,REST ,and salt ,water ,was the only thing that help,but the tears never stop my body feels like ,some thing ran over me for three day after

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