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CLL Support Association
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Leg Cramps

Not sure if related to being on Imbruvica but lately I've been experiencing frequent episodes of severe leg cramps.

Magnesium and potassium have been suggested.

Any opinions or experience

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I'm on WW and no imbruvica and I've had leg cramps since the CLL diagnosis

What works for me - Epsom salts in bath, (for the magnesium) - and watching my supplement intake as I can quickly imbalance some key nutrients with too much of one and not enuf of the other -(calcium needs vit K and D) I've moved towards raw veg juicing and a liquid mineral supplementing and moving away from the tablet supplements recently because of the imbalance problem - I know not everyone can do raw at some point in the CLL journey but for now this works for me - veggies are organic and get trimmed and a vinegar bath before juicing - anyway - I don't know which nutrient/mineral I may be deficient in but the combo juicing spinach, celery, carrots, cabbage and apple along with liquid minerals has kept the cramps away - maybe try a good pharmaceutical grade mag/zinc/D supplement if you can't juice - hope this can help in some way ...

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I do get them the night cramps and something that stops them right in their tracks is putting a pillow or something to elevate just your feet. Mine was pretty bad at times . Now as soon as l feel one coming I grab my extra pillow I keep by my bedside. The cramp immediately subside.

AJ

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I'm on Ibrutinib and the cramps are miserable. Nothing seems to make a difference and they haven't got any better over time, unlike most of the other side effects. Sorry I can't be more help but you are not alone.

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Me too and only in the last month. I am on month 7.

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I have been on Ibrutinib for 4 years now and take magnesium daily. When the leg cramps are severe, I drink tonic water before bedtime, and this controls the leg cramps for me. I hope this is helpful to you.

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My husband doesn't have CLL (I do) but am not on treatment at this time. However at his last PCP appointment his doctor told him to try tonic water before bedtime.

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I was told to drink lots of water which I did but the cramps was still keeping me up at night. Then was told to take magnesium, potassium and eat a banana before bed. Which I did and boy the cramps stayed with me. Elevating my feet by my ankles seems to be the ONLY remedy that works. It's simple and effective. One thing I noticed if I lay on my back the cramps will continue even with my feet slightly elevated to the point where I have to get out of bed and massage my calf, feet and toes for a few minutes. As I mentioned before as soon as I feel a cramp coming I lift my ankles onto the pillow I keep at my feet and turn on my side. That stops it from progessing immediately. This CLL is not fun. A good nights sleep is the most important part to stay healthy.

Best of luck!!

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I'm untreated and have tried absolutely everything but still suffer agonising leg and foot cramps at least 5/6 times a night. They're so bad I have to get up or my feet will twist out of shape and the toes flare outwards. Even when it subsides my leg pulses badly.

I'm on a Vit D and magnesium supplement (prescribed), drink lots of water but can't ease them at all. I don't want to use too much quinine due to possible adverse effects on platelets.

I'm open to any suggestions and will be discussing the possibility of trying Pentoxifylline if the symptoms persist. They're miserable and rob much needed sleep! :-(

Newdawn

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I'm currently taking Ibrutinib and have suffered cramps not quite to the extent of some people but never really associated them to cll as only recently diagnosed and treated, however I have looked in to potential causes for those of us taking Ibrutinib and still in watch and wait, it's from my understanding cramps can be caused by anticoagulant drugs or other potential sources such as alcohol and Ibrutinib which can thin or alter the blood, just out of interest do many of you take any other blood thinning medicines or drink any alcohol close to bedtime, aside from the supplements and hydrating ourselves this could be another potential cause, hope this helps.

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Thanks Lewis but neither of those apply to me. Good luck in eradicating them for anyone suffering cramps.

Newdawn

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Hi Newdawn, I've had a look at potential natural remedies and like everything until tried and tested we'll never know, I've added a link below, it may help. foodmatters.com/article/5-n...

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Hi sorry I forgot to also mention salt or lack of can cause cramping

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Newdawn try the little hard pillow under your ankles. I have it right there next to my feet every night and as soon as I feel another distortion putting out its ugly head I pop my feet up. Just lift them up the 10 inches onto the little block pillow. A yoga block works great too.

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During my almost 9 months on Ibrutinib, I've experienced intermittent leg cramps in both legs, and have tried to be aware of what leads up to the cramps and about nutrition. There are lots of references that show that many medications deplete certain vitamins and minerals in our bodies, so it isn't surprising that side effects occur. The more we learn, the more we realize what a delicate balance all those elements require in order for the machine to function well. Changing only one, without considering others that work in concert, affects the balance, with the potential of side effects.

As a vegan, I know I don't get any B12 or vitamin D3 to speak of, and have been supplementing these elements for many years. However, lots of greens, spinach, kale, swiss chard, chickpeas, nuts and seeds in my diet are good sources of magnesium, potassium and calcium. So when leg cramps started a couple months into Ibrutinib, I did start including magnesium a few days a week. I think there was some improvement, though it's hard to say that was the key. If you read further in this too long treatise, for which I apologize, you'll see other ideas. Maybe something will resonate and help you as well.

A turning point for me was the result of an echocardiogram a year ago. I had always assumed that my 40 year vegetarian diet, and vegan the last 5 years, was keeping my heart pretty healthy. Granted, I've always had a mild mitral valve prolapse, resulting in occasional premature ventricular contractions, but I haven't considered these as problematic. So it was a revelation to learn that all three heart valves showed mild calcification, and I could hear the backflow during the test. This combines with CT scans reporting mild calcification of the arteries. Even at age 77, I felt that my life style warranted better results.

I learned that researchers have relatively recently broken down vitamin K into two components. I was getting plenty of vitamin K1 in all the greens in my diet. However, by not eating any animal products, I was getting no vitamin K2, a vitamin I had never heard of prior to my research. Turns out K2 is essential for a lot of important processes in our bodies, including slowing the progression of calcification in our arteries, as well as other heart related issues and the way calcium is absorbed to maintain bone health. Also, calcium, vitamin D, magnesium, and K2 need to be in balance in order to be effective in our bodies. It's known that it's best to get essential vitamins and minerals by eating whole foods; however, not eating animal products affects the balance.

It became clear that my veganism required K2 supplementation along with B12. Further research showed there are two types of K2 supplementation: MK4 and MK7. MK4 is synthetic, and not as effective as MK7, which is made from nonGMO natto, the natural nasty-smelling fermented soy superfood that is a staple in the Japanese diet. When exposed to it from babyhood, it is enjoyed and leads to health. When exposed to it later in life, most find the odor too foul to bring to the mouth. I wish it had been introduced to me as a baby. I wish I could bring myself to eat it. Instead, I've added MK7 to my supplements.

On another note, our physical frame is also a delicate balance. At least for me, I have found that the way I am sitting has an effect on leg cramps. I think it has something to do with the alignment of my spine, particularly in the lumbar region. So if I am sitting in a way that puts the spine out of alignment -- for example, sitting with my leg folded under me or on my Yogibo (a pellet-filled beanbag type pillow) that can change shape as I settle in and change alignment -- there is a greater likelihood that a leg spasm will occur after a while. When I consciously sit or recline so my spine is in alignment, the spasms rarely occur.

I get no leg spasms in bed since getting a Tempurpedic mattress -- essentially a cloud that wraps around and gently supports (no, this is not an advertisement ... I have no attachment to the company, receive no payments from them, and have not been encouraged to speak of their product). This reinforces my belief that the cramping is related to spine position. Perhaps this is one of the reasons why some people find that a pillow placed under the feet brings relief. The raised legs naturally realign the lumbar region of the spine, maybe taking pressure off some essential nerve. A pillow under the knees or feet is a common remedy for lower back pain. So is sleeping in a fetal position on one's side.

I also find that stretching the legs through exercise and walking help keep the muscles more flexible and less prone to cramping.

So I'm covering all bases, making sure I am getting sufficient magnesium and K2 in a way that they will be absorbed, and trying to be cognizant of body strength, flexibility and position. Hope you're able to find solutions for you.

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Hi RJR1, I've also experienced leg cramps and believe that mine was related to anemia. Since I've been on iron supplements, the cramps have subsided. Check your ferritin levels. I also find that standing up as soon as you get a cramp gives instant relief! Hope you feel better soon.

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