CLL and night time leg cramping: Has anyone else experienced this? & Shingles vacine

Diagnosed 2 years ago, but probably the process began further back. Just went undetected. Having increased nightly leg cramps which started about 2 years ago. Also, I was given the Shingles vacine this past year. The doctor obviously didn't read up on the No No and the fact that it should not be given to people with CLL. No adverse effects, so far.

Heath has been pretty good with the exception leg cramps and Planter Faciitis.. Any others out there ?

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  • I have had periods of cramps.

    Sometimes during the day when I have been walking a lot, I get cramps in my toes.

    At night I have had periods when I have woken up and suddenly got calf cramps. I have learnt to get out of bed SWIFTLY, otherwise they are extremely painful. When I had FCR treatment the cramps stopped..., but have returned since.

    I can't get my Cll consultant to make any link...

  • Definitely run similar with the exception that mine primarily are during the night. I too have

    Learned to jump out of bed quickly or else I would be pacing the floors with 5-15 minutes of agonizing cramping. All different muscles of leg and toes could be involved. I never know which it's going to be. Sometimes crossing or folding my legs during the day can result in toes cramping. I've tried everything from increased liquid consumption during the day to supplemental potassium and magnesium without success. As you said, the doctors haven't made any association. They tried restless leg medication (Requip) which did nothing but give me headaches in morning.

  • I was also told 'magnesium' and drink before you go to sleep. Doesn't help. I do relaxation exercises when the cramps come (learnt when pregnant 36 years ago!) and they DO help. Good luck!

  • I suffered from Planter Fasciitis, switched to a drop heal sandal like Birkenstocks and started to walk twice a day. In a couple of months I was doing 4 kms, with no pain, in regular runners...

    Before you start any exercise program, discuss it with your GP, first.

  • Hello

    Two years ago, I didnt knew what was a cramp...Since dxed 18 months ago, I have had period of cramps, particularly at beginning and end of night. This has worsened in the firsts weeks of Ibrutinib treatment, ... now it seems to lessen.

  • Hey,

    For several years I have suffered with cramps - thighs, calves, toes & fingers - I read that Quinine was a cure found in Tonic Water but there is so little in a litre bottle - you need to drink 2/3 bottles to have a reasonable dose of Quinine.

    My GP offered daily Quinine Tablets - which certainly cured cramps - BUT my Oncologist did NOT want me to take these tablets during CLL Treatment (B + R.)

    So I am back with the "jumping quickly out of bed group" until my Oncologist advises differently.

    Marty

  • Interesting to hear your GP offered Quinine given the MedlinePlus warning:

    "Quinine should not be used to treat or prevent nighttime leg cramps. Quinine has not been shown to be effective for this purpose, and may cause serious or life-threatening side effects, including severe bleeding problems, kidney damage, irregular heartbeat, and severe allergic reactions."

    nlm.nih.gov/medlineplus/dru...

    Neil

    Also in the "jumping quickly out of bed group".

  • Try old-fashioned fluffy bedsocks. Got tip from my sister whose diabetic husband suffers from cramp. Ideally make sure the area of the bed is warm first. I didn't bother last night and cramped for the first time in months.

  • I too have PF and also lower leg cramps. Podiatrist sorted me out with special insoles which helped although PF still returns now and again. It can be extremely painful so do seek medical help if not already done so. I do have poor circulation which is a factor in my case.

    Leg cramps become worse if my feet are cold in bed so go for the fluffy socks. Someone mentioned quinine tablets. I took these several years ago and they did help. So long as you are not on chemo it may be worth asking your consultant if it is ok to take quinine. Your GP doesn't seem clued up re. cll - so go higher !

  • Definitely concur to CLL links to leg cramps - really painful at night. Is there a medical reason for the cramps? Is it because we have so many extra white blood cells trying to get round the system?

  • Couple of things that might help (I get trouble after excercise)

    - When sitting down in the evening, try raising your legs up with something soft under your feet to get your legs more horizontal

    - Old fashioned warm baths (Athletes of course go for cold baths but I'll ignore that one :-) )

    And if you do get the cramps, then don't stay in bed. The faster you get up the quicker I think you get back to bed. I just walk downstairs, do one circuit of the ground floor and back to bed. Wierd that seems to work so well.

    And when that wakes up your brain, then meditation techniques do seem to help.

    Zzzzzzzzzzzzzzzz. . . .

    Ernest.

  • Hi,

    Sorry to hear of the cramping. My wife and her siblings suffered badly from cramping. Some 12 months ago I listened to a program from a researcher in the field. He believed the problem was caused centrally rather than being initiated in the affected muscles. His recommendation was to take pickle juice. It sounds incredible but my wife and her brother and sister have done so and have remained cramp free. They take gherkin juice as a 20ml dose which seems sufficient. I was struck down with an autoimmune condition in my early twenties. Symptoms included severe cramping, drenching night sweats, fatigue and foggy brain. I wonder if CLL has similar symptoms due to the disruption of our immune systems. Just a thought.

    Lee

  • Sorry I also forget to mention:

    Stretch the legs: quads, calves, hamstrings, and knees to chest (lying down for last one).

    For the last one you can also pull sideways gently inwards to relieve sciatica type pain.

    Generally do that in the morning.

    P.S. Ignored my advice in post 3 days prev above on Sat night and hey presto ended up waking with pain in the calves, and going for the nocturnal walk, feeling somewhat foolish (at least I've done the control experiment)

    Ernest.

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