I'm curious about members' experiences with severe muscle cramping - lower body +hands and arms. Been watch and wait for years but now likely 2 mos out from starting treatment. Concommittants are panhypopituitarism and fibromyalgia (possibly CRPS) so I'm no stranger to common nighttime leg cramps. This is different. These attacks of intense cramping last for days and nights, seemingly unaffected by anything from my arsenal of relief, then poof! gone (I have everything from prescription muscle relaxers and pain relievers to numeous supplements, electrolytes, internal/external CBD products, etc.). I've just read muscle cramps can become severe as lymphocytes climb and one heads toward treatment. I wonder if you have experienced this or similar and what helped you. Also curious if you buy into the lymphocyte theory. Finally, should I report this to my oncologist? He can be a bit dismissive. I've also spoken to my pain doc but he cited the expected remedies, all of which I routinely use. Apologies in advance, I tried to keep this short!!
CLL & Cramping : I'm curious about members... - CLL Support
CLL & Cramping
Have you tried a magnesium supplement? My cramping became increasingly painful prior to starting treatment, which eventually eliminated it. I had to stop taking the magnesium supplement during the clinical trial, but the trial nurse recommended a topical magnesium cream. I was amazed at how quickly that worked - within a couple of minutes the cramping pain abated. I still have most of the Active Magnesium cream (magnesium chloride hexahydrate, 300mg/gram) remaining in the tube . Recommendation is to massage a teaspoon of cream over the affected muscle until fully absorbed.
Neil
Thank you Neil! I take 300mg Mag glycinate daily but don't know if it's helping. I didn't know a cream was available but I'm certainly going to buy it! My daughter brought me a CBD tincture to put under my tongue and a CBD cream to rub on and, after 3 days and nights of agony and way too many prescription drugs trying to make it stop...it worked. I was amazed! You probably know already, but none of my specialty doctors had any solutions beyond what I was trying...frustrating. Again, thank you, and all the best to you and yours in Oz ❤️
Hello Penfield2
My wife who does not have CLL, has suffered from night leg cramps for years. As AussieNeil suggested the only thing that worked for my wife is magnesium. however the magnesium supplements give her severe diarrhea. The magnesium sprays and roll-ons however work great for her without the diarrhea. Blessings.
I seem to have reduced the leg cramps since taking vitamin d and having vitamin b12 injections over the last two years or so but may be coincidence. After 10 years watch and wait however I am now told low haemoglobin from cll means likely treatment soon. The other thing more definitely relevant to cramps but maybe not to most people, is that if I cycle to hospital 9 miles away and back, I get leg cramps next day unless I have an hour or two at the hospital breaking up the leg exercise. I take some puzzles to use the time waiting.
Tanks so much for sharing, Doug. Nine miles of cycling is impressive!
Hi Penfield,
I have had painful leg cramps all my life, mostly at night. About 10 years ago they suddenly stopped. I speculated that it was because I had started drinking mineral water. I also take a magnesium supplement now. And vit D daily.
Whether any of these help I have no idea! But something has changed.
Rereading this, I am not sure it's of much value to you. But as others have said, the magnesium does seem to help.
All the best
M
Thank you, Chilli, I'll certainly investigate the mineral water! I do take the B and D supplements.
Hi, I get weird cramps too. Seems to come and go in periods of time but has been noticeably worse when approaching treatment and during early stages of treatment. They hit all leg and foot muscles and also my hands. I drop tools, knife and fork. Sometimes I'll get simultaneous cramps in foot, calf and thigh of BOTH legs. I seem to have a good feel for when these things are coming now and I take a magnesium supplement but I do not think it does much more than give me confidence. The best thing for me has been a hot shower followed immediately by stretching all the muscles that may cramp- I do this now in those periods when I can feel cramps are likely. I've not been able to find any definitive link with CLL, My haemo and GP know about it but have no idea what to do about it. We all think it is probably related but really can't say for sure. I hope this may help you in some way.
Did you try epsom salt baths? Magnesium gets taken up through the skin. Also, do you salt enough? How is your blood sodium level?
Thank you! Your experience sounds a lot like mine. I shared in one of my replies that I began a little regimen of CBD oral tincture and CBD lotion, both of which seemed to do the job after 3 agonizing days and nights of trying everything under the sun. All the best to you!
I too sufferd from severe leg cramps. Once I started treatment, Zanubrutinib, the leg cramps almost disappeared! Infact a lot of my aches and pains disappeared once I started with Zanubrutinib. Good luck to you. 🌷
I’m going to piggyback on this post because my experience is similar except my treatment is O+V. However, I’m almost at the end of treatment and I’m experiencing a very minor return of leg cramps.
The homeopathic form of magnesium works quickly. No water needed, no side effects. Homeopathic Arnica Montana is also helpful for pain whether ingested or used topically.
Cll pain
stopping ibrutinib after 5 years
Dermatology biopsy results consistent with diagnosis of CLL. Unclear what this means? 
CLL and Root Canals
Muscle cramps on Imbruvica
