I was diagnosed in May 2011and am still on W and W. Blood counts are going the wrong way so maybe treatment is on the horizon but I have no other symptom.
Just recently though I have been getting severe cramping in my legs and feet at night. This goes after some walking about in the bedroom but it is literally a pain.
Any ideas on how to handle this and does anyone else get the same?
Thanks
Hi Clovelly,
This is a major problem for me too! As I type this, having barely slept because of it, my calf is twitching and distorting. It's dreadful and you have my shared sympathy.
I have found a Vit D supplement from the GP (after tests discovered a deficiency) have helped a fair bit. I'm also taking a calcium and magnesium supplement with it but this needs to be discussed with your doctor. Stay well hydrated too.
These Charley horse cramps are excruciating though! Hope you can find a solution and if anyone has, please share. Incidentally I can't stand tonic and I know some use that to help as quinine.
Regards,
Newdawn
Common problem with cll I'm afraid.
As Newdawn says speak to you med team but be prepared for them to poo poo the idea that cll causes the cramps as there as been no research proof despite patients reporting these symptoms on a regular basis.
Magnesium is a well known treatment but please do check before taking any over the counter medication!
Geoff
My cousin, who trains for a yearly bike fundraiser, now swears by pickle juice. I've seen others post that it gives them relief, also. Mustard is the other one that comes up often. I have ne personal experience with either, but might try one or the other if I was desperate. Along with magnesium, have your potassium checked.
I had foot cramps nearly every night until I started wearing warm socks to bed. I've had no further problems with foot cramps since then.
I had regular night cramps (in my feet and toes) until I had my spleen removed a year ago. After the surgery (not during the week before even though I was in hospital then), the cramps suddenly stopped. Very strange...
When I came out of hospital the cramps did not come back, until just recently when I've started to get them again - just slightly, and not every night.
A lot of us have shared our cramps stories on this site in the past, but there are no clear answers that work for everyone. Sometimes it seems to be from dehydration - keep your fluids up, especially before going to bed. For some folk it seems to be an electrolyte inbalance, and rehydration salts help. Taking magnesium helps some folk. Keeping warm can also help, as MelioraDay has just mentioned. I was interested to read about MsLockYourPosts 's cousin and the pickle juice. Pity I don't like pickle juice, or I might try that..
I hope you find something that helps you, Clovelly.
Best wishes,
Paula
Juste to add confusion to thé mix:
I found I needed more salt in my diet! Half an individual packet of salted crisps a day is enough. I rarely add salt in cooking, and would never sprinkle it on food.
Many thanks for all these helpful replies! Not sure about pickle juice - in fact not sure what this is! - but all the other comments all make sense.
I shall talk with my GP about Vit D and magnesium and certainly I'll keep an eye on hydration and salt.
All the best
I had muscle cramps before CLL and then some when I started treatment, but they went away. I once complained about them in front of a skating coach and said I should have more bananas. He said I was wrong, it was a hydration issue. I haven't had any since I ramped up my hydration as part of my treatment. Not sure this is the answer, but it worked for me.
During my hospitalizations this year I was referred to an endrocrinologist. Turns out magnesium, sodium, calcium, phosphorus were all wonky. Now they are all normal the cramps have stopped.
What did he give you for the wonky electrolyte imbalance?
Sadly also something I suffer from. Tried Magnesium spray and a G and T and then my GP, who is excellent, checked with my Consultant if I could take Quinine tablets ! Back next week to see her and will let you know what, if any, effect.
Quinine can disrupt platelet function... so it usually is not a recommendation to CLL patients...but as always, everyone's situation is different...
Previously on HU
healthunlocked.com/cllsuppo...
~chris
Thanks Chris, I was not aware of this. I thought I would try and see if it made any difference, but back in December and will ask Consultant again.Regards C
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