Leg cramps are becoming frequent, does anyone else experience these?

[LAinNYC]

my husband's doc told him that this isn't CLL-related, but they're occurring at the same time that his blood values are going wacky (my "technical" term and he's about to start chemo... I'm curious about it...

[saintjohn]

Hi LAinNYC.

I too get really bad leg cramps and my Doctor has said the same to me that its not CLL related,but then the medical profession tend to say nothing is related to my CLL when I suffer from whatever come's along.Strange really as prior to diagnoses 18 months ago I would say I was relatively pain free and healthy other than Fatigue and Dizzy spells which prompted the blood tests that revealed the CLL.

1.Hip and shoulder skeletal pains.

2.Extreme Fatigue.

3.Night sweats (variable from manageable to sever)

4.Stomach cramps

5.Leg cramps

6.blurred vision & neck pain (combined)

7.Constant Kidney infections leading to water work issues.

ALL of the above apparently have absolutely nothing to do with my CLL although I have heard from various other sufferers on this and other sites that have had the same symptoms.Make's you wonder doesn't it.

regards

John

[jiajia in reply to saintjohn]

That's a familiar list ! Shoulder and hip pains that grumble constantly, and flare up after any exertion, leg and foot cramps, fatigue, night sweats, but I am never sure whether some of this is due to the disease or treatment.

[LAinNYC]

for what it's worth, after saying it's not cll, tonic water ( contains quinine) was suggested

[MartyR in reply to LAinNYC]

Hi, sorry to hear about all your aches and pains. I agree with the "tonic water" comment because I have had severe cramps during remission and was prescribed a Quinine tablet a day - approx equal to two litres of tonic water.

BUT I was advised to stop taking the daily Q tablet during my current chemo treatment B + R + Clinical Trial. Strangely I have NOT had v bad cramps (perhaps just fingers & toes) for the last 8 weeks of treatment !

Regards Marty

[Cllcanada Top Poster CURE Hero]

Tonic water is NOT a good idea for CLL patients ... the quinine, although a small amount, can effect platelet aggregation....(clumping)

Try increasing your hydration levels with water, this has worked for me over the years, of intense CLL related leg cramping...

Article about the use of quinine and leg cramping... FDA does not recommend its use.

medscape.com/viewarticle/77...

[PaulaS Volunteer]

I can relate to Chris's comment about increasing hydration levels to prevent cramps. It wasn't till the present heatwave started here in the UK (a few weeks ago), that I started getting regular and horrible leg cramps. I didn't think of it being related to CLL, but a friend suggested that it could be due to dehydration, so now I'm drinking a lot more water. Rather to my surprise, the cramps have almost completely stopped.

[cllgirl]

Yes, I have experienced these also. They became most severe just prior to and during the first months of my Ibrutinib clinical trial treatment. I do believe they are affected by dehydration. I have concentrated on getting more fluids and taking a magnesium supplement since I was barely in the normal range. Since I started the increased water intake and magnesium supplement, the leg and foot cramps have all but disappeared.