Does anyone suffer leg cramps especially in bed.

[piglet2]

[AussieNeil Administrator]

Yes, painful ones in the calves, usually around normal waking time. They get much worse if I don't rapidly get out of bed and get some weight on the offending leg to stop the cramp from becoming locked in. The muscle can be quite sore for at least a few hours afterwards.

I've not heard of there being any relationship with CLL. Sorry, I can't really offer any suggestions on diet changes or supplements to reduce the incidence, but I'm sure you'll find plenty of tips on-line or from other sufferers. It seems I get to the stage where I've had as much as I can stand and then they conveniently stop without any dietary intervention.

[piglet2 in reply to AussieNeil]

Thank you for this I don't know if there's a cll connection I just know how painfully it can be

[Cllcanada Top Poster CURE Hero]

Very very common problem in CLL, might try potassium supplements...

You may read about using tonic water (Quinine )on the internet..DON'T..it can effect platelets in CLL...

From what I have read quinine is available in tonic water in the U.S. but not to exceed 83 ppm. It is used to give a bitter taste.

The FDA warns about quinine drugs in general...

"Quinine drugs are associated with serious side effects, such as cardiac arrhythmias, thrombocytopenia (a decrease in blood platelets that can cause hemorrhage or clotting problems), and severe hypersensitivity reactions.

There is also the potential for serious interactions between quinine drugs and other drugs, and there are conditions under which quinine should not be used."

"Cautions Consumers About "Off-Label" Use of Quinine to Treat Leg Cramps"

fda.gov/NewsEvents/Newsroom...

Old wives treatment... vinigar, pickle juice or a table spoon of hot mustard... some swear these help...

[henrymck]

Yes. The cramps are so severe that I am worried that I will get one when I am driving. Tests showed that my B12 level was down so I am now on 3-monthly B12 injections for ever. However, my Haematologist is sceptical of a) the test result b) any connection.

[Safta]

I was told it was connected to my magnesium level, but this isn't medically confirmed. I get them often too, and I do my relaxation exercises which I learned at pregnancy. They work, although my leg feels 'tired' for some time afterwards.

Wish you well!

[Hidden]

Yes i get them,but do not connect everything with your CLL,i know so many who get them and do not have CLL,i know a lady the size of a farmhouse who gets out of breath a lot and keeps blaming her CLL,i have told her maybe cutting out pork pies and cream cakes might help,not pointing the finger at you.

[Nicebaps]

I don't now but I did do about 18 months ago. My GP prescribed Quinine which had little effect. When I mentioned it to my Haematologist he just dismissed it say something on the line of " there is no connection with CLL". July 2011 I developed a large bruise on my leg whilst on holiday. On return I had my normal CLL check to discover that my platelets had dropped to 31. On investigation I was then informed that I had ITP and that the Quinine that I was prescribed may have been the cause. As Cllcanada said "You may read about using tonic water (Quinine )on the internet..DON'T..it can effect platelets in CLL... "

From my experience there IS a connection with CLL but in time the cramps "Should" disappear. I would be interested to know how you progress.

Best Wishes.

[Cllcanada Top Poster CURE Hero]

Hmmmm...well anecdotally CLL and leg cramps appears to be connected...a search of ACOR list dating back about 15 years has over 300 posts...obviously some are asking about cramps and others offering help...but where there is smoke there is fire...

I have had them for 10 years, and have found good hydration helps...they have certainly become much worse during R-CHOP treatment to the point I get 4 or 5 episodes a night and my calves ache for days afterwards...interestingly, they have started in my feet as well, perhaps something to do with peripheral neuropathy...can't feel a bloody thing otherwise but I certainly can feel the cramping! Pointing my toes...works to alleviate them..if you catch them early in the spasm cycle...

~chris

[sparkler]

Pre CLL dx, I suffered occasional calf cramps at night. Post dx I am plagued by them and not just at night. I get them in my feet too and more recently, in my hands. I have also noticed muscles in various other parts of my body going into a kind of spasm (cramp?).

My GP suggested Tonic Water....didn't work anyway!

sparkler x

[piglet2 in reply to sparkler]

Thanks for this I'm the same under rib cage feet and hands guess we'll just need to live with it.

[cocotoffee]

Yes I certainly do and they are very painful. When I mention this to my consultant he tells me its not connected to cll and although I read of other cll patients having this same problem it can be very frustrating when doctors tell you there are no real side effects of cll. Well I seem to have some especially fatigue (my doctor tells me we all get tired and need to recharge our batteries yea whatever,) its nice to know other cll patients have similar symptoms so we can't all be wrong.

[piglet2 in reply to cocotoffee]

I agree with youbothwith the tiredness and cramps in all muscles, also get annoyed when discarded thanks for replying keep well.

[Marianne1234 in reply to cocotoffee]

I go to Sloan Kettering and I certainly will be asking about this awful leg pain. The only thing I ha e found helpful has been to get in bed put my legs up and massage them with an organic lotion for about 10 min each leg. I also got the ok to take alleve for pain. Be really careful with the quinine as it does disrupt your cells.

[PE1234]

I find if I don't drink enough water during the day I get them .Like some on here if I get out of bed quickly and press hard on my leg they tend to disappear quicker ,but drinking lots of water seems to work for me .

P