PN and Muscle Cramping

I’ve been taking thalidomide for the past 4 years, and putting up with the gradually increasing neuropathy. The sudden-onset muscle cramping, however, does get downright annoying, especially when one of my super exciting dreams is interrupted by a golf-ball sized muscle cramp hitting in the calf of one leg. An interesting question comes up: does the activity in my dreams (leaping from building to building a la Spiderman) cause the cramp, or does the onset of the cramp influence what I am dreaming? I should mention that I have always had really great dreams – now that I’m 71 years old, it’s the only real excitement that I get. LOL

I will put up with my fingers getting twisted into weird positions. That is merely annoying, especially if I am trying to hold a pen or a pencil. What really hurts though, and what I find the most distressful, is a cramp in the arch of one or both feet just before bedtime. Nothing seems to work – heat, vibration, massage, NSAIDs. For years, I have read about people using tonic water (quinine water) to treat muscle cramping, and I have always scoffed. “How can a miniscule amount of quinine possibly influence muscle cramping?” sayeth I. ” It must be in their imagination!”  Well, one evening I was ready to try anything, and found a bottle of quinine water in my larder. Ice in the glass, and glug, glug. Within five minutes the cramping in the arch of my foot was GONE. I believe that my reaction was, “Son of a gun!” or something like that.

The next night, same thing: cramps start, drink a glass of tonic water, cramps stop and I get a good night’s sleep. Great dreams: no cramps in the middle of the night, either. Being skeptical, the third night, I went cold-turkey: no tonic water. At two in the morning, while climbing a hillside carrying my trusty 7mm Remington Magnum on a bear hunt, my leg knotted up with nasty cramp. Sudden-End to a really great dream.

Gentle readers, I am not one to leap to conclusions, but every night for the next 2 weeks I drank the tonic water (yes, I went to the grocery and stocked up on a generic brand, some with lime and some “straight”). No cramps. If I skipped the tonic water, I got cramps. Therefore, I must come to the conclusion that tonic (quinine) water has a miraculous ability to stop and/or prevent muscle cramping caused by long term dosage of thalidomide.

There is an additional benefit. Both my Family Physician and my VA physician advocate taking 1½ oz of spirits, or a glass of wine, before bedtime. (a little ethyl alcohol IS good for the human body). This is a marvelous excuse, then, to imbibe a vodka n’ tonic before climbing into my P-47D Thunderbolt, and zooming off to fight a bunch of Me-109′s at 25 thousand feet.

Best regards, Bob Oberle, Chantilly, VA aged 71, dx 5/02 IgG lamda stage 2A, SCT 3/03, in CR since, thalidomide q36hrs for maintenance.

  1. Thanks for this one. Really helped out my Dad. He gets cramps in his hands, and the Tonic really works!

  2. Really! My MM was diagnosed 2-1/2 years ago (lambda light chains) and it responded gradually to Velcade and dexamethazone over a seven-month period. At that time I to I had an autologus SCT which put me in remission. Of course I am thankful to have had these treatments available and to the medical industry and God’s will for my current condition.

    I’m on Revlimid maintenance and do have recurrent cramping in my feet and, occasionally, calves. Will be giving the tonic treatment a try right away! Thank you for posting your experience!

    Best Regards,

    Roger Gagos
    Escondido, CA

  3. I take Lasic for water in legs (salt issue). Eventually you need more tonic as the cramps ignore the quinnine. So now either get quinnine prescription or drink mucho tonic water and up all night urinating. I got the pills. Insurance wont cover. About $289/month but one d/n need them daily only as cramps apprear. Cannot take these pills with BP pills so be caresful

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