Leg Cramps: I was diagnosed in 2012. Multiple... - CLL Support

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Leg Cramps

BallyB
BallyB

I was diagnosed in 2012. Multiple treatments, now on acalabrutinib with good results. Some headaches and dizziness are the side effects. My problem has been leg cramps for years, now becoming more intense and problematic at night or when reclining. Not an issue while upright during the day. I tried eliminating my statin with no effect. Anyone have a solution?

16 Replies
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Try Claritin without D for immediate relief. Magnesium Glycinate 400 mg twice a day takes about 2 weeks to start to work. Try Claritin first. How long were you off the statin? Did your GP say it was ok? 💕

BallyB
BallyB in reply to GMa27

I took Claritin for years and switched to fexofenadine recently. I take 500 mg. of magnesium daily. Doctor ok with statin test.

GMa27
GMa27 in reply to BallyB

Make sure it's magnesium Glycinate.Might make a difference. You may need to avoid the statin for at least a month.

You can try this crazy suggestion I read about years ago and it works for me....take a small bar of Ivory soap

( other kinds might work) and place it under fitted sheet near ur calf area. It worked from the first nite I tried it. When I forgot to put it under the bed at my daughter's, my cramps came back. The next nite I put it under the sheet

( had packed it in my suitcase).... It worked! 😜

BallyB
BallyB in reply to GMa27

Thanks, I will try anything!

AussieNeil
AussieNeilAdministrator in reply to BallyB

I found that commonly available magnesium tablets worked for me - main constituent plain magnesium oxide, with a small amount of magnesium amino acid chelate in one formulation I took. Unlike your experience, the cramping largely abated when I started treatment on Acalabrutinib a year ago, later adding Obinutuzumab and Venetoclax. When I was still getting the occasional cramps (which weren't nearly as bad as the excruciating ones I used to get in my calves and occasionally my thigh on waking before starting treatment), a nurse recommended a fast acting magnesium cream. I found that typically gave relief 30 to 60 seconds after application. The active ingredient is magnesium chloride hexahydrate 300mg/gram. Can't remember the last time I used it!

Neil

I have just started Venetoclax and had been having leg cramps (mainly my right leg) until my partner massaged my right calf muscle in the evening. The cramps have disappeared.

It was obvious to her there was knotty tissue and a regular massage seems to have alleviated the problem entirely.

Do you watch your salt intake? If you limit your salt intake like many people do, you may have not enough electrolytes which are important for proper nervous system functioning. There should be commercially available electrolyte powders that can be diluted in water to drink. Check with the doc first of course. The magnesium tips are good too. Take the bisglycinate form. It's way more absorbable than the oxid or citrate.

AnneHill
AnneHill in reply to LeoPa

I have low sodium and I had a low salt diet. I add salt to a few items but I have rehydration salts now and again. The cramp has gone. Anne uķ

LeoPa
LeoPa in reply to AnneHill

The problem becomes much more pronounced on a low inflammatory (read low carb) diet. Then even more salts are needed. I found I consumed way less than I needed and I was never avoiding it in the first place. The advice to avoid salt never made sense to me. We are made of 70 % salt water and loosing salts through sweating all the time. So how can we not replace salts and expect to be healthy? Yeah, one of the many nonsensical advice we get from "credible" sources.

AnneHill
AnneHill in reply to LeoPa

l didnt avoid salt and put it in the saucepans but if steaming veg salt wasnt added. I had to have my blood retested on 2 occasions because the salt levels were dangerously low. They are on the low side all the time. It was a good excuse to buy salted peanuts. Rehydration salts help. I do have a problem with an irritable bowel and am conscious that things need replacing. Cramp is related to salt in my case. Anne uk

LeoPa
LeoPa in reply to AnneHill

Did you try air fried kale? Mix with salt, pepper, mashed garlic, spray with oil, cover with thin slices of bacon. Air fry on 120 deg Celsius for about 10 minutes. My new favourite 😊 Not bitter at all. Sooo tasty. I never thought I'd actually like kale. It doesn't love me back, so it's a platonic relationship only 😂

AnneHill
AnneHill in reply to LeoPa

First time for everything. We used to cook leftover potatoes and cabbage and make bubble and squeak. Served with bacon. Not quite the same but it reminded me of it.

Agree with LeoPa. I had night cramps in my legs and feet on Venetoclax. Magnesium and all the other suggested treatments made no difference. I started using more salt on my food and the cramps quickly went away. I was on a very low-carb diet which makes you pee out more sodium than normal, so maybe my circumstances were different, but it might be worth trying if nothing else works. Get medical advice about extra salt if you have high blood pressure.

My wife has the same leg cramping problem - the cramping started with Ibrutinib. After stopping Ibrutinib the cramping gradually lessened but it is still there. She found that Theraworx foam provides temporary relief.

My Doctor told me to take Coenzyme Q10 100mg. I purchased them @Cosco. It definitely helped me. Comes in a form of enteric coated softgels.

SofiaDeo
SofiaDeo in reply to Unglorious

Oooo, especially after being on a statin for a long time your CoQ-10 may be low. At least 1 pharmacy reference text recommends all statin patients take extra CoQ-10. And how much exercise/stretching are you getting? I get evening leg cramps often when I forget to stretch properly, especially if I've been walking/hiking a lot that day.

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