Muscle spasms (Cramp, Charley Horse)

[june65]

Hi, Does anyone else have a problem with muscle spasms, especially at night. My husband is experiencing spasms both day and night, he is on the verge of having more treatment, hopefully Idelalisib and Rutuximab, if his haematologist is able to get funding. He does also have heart failure so not sure whether it's that or the CLL that is causing his problem.

[PaulaS Volunteer]

Hi June,

I also get cramps in my feet at night. I'm not sure if that's the same as muscle spasms. I've only been getting it for the last year or son - not sure if it's the CLL or not. (My CLL has got a lot worse these last 2 years and I'm on the verge of having first treatment).

I'm afraid I haven't found any good way of dealing with the cramps. But they seem to be worse if I haven't been drinking enough.

Wishing all the best to your husband (and you) as he gets his next treatments.

Paula

[drstan2015]

Hi June,

I get severe muscle cramps in my legs and fingers. My most severe leg cramps come at night and are usually in my thigh muscles.. The one thing I have found is to drink two 16 ounce bottles of water which I keep by my bedside. After 15-20 minutes they will go away and not come back for the rest of the night. I am currently in a clinical trial of ibrutinib and rituxuan. I had the leg cramps prior to being in treatment and the occurrence of the cramps has not changed with treatment.

Good luck and I hope you get funding for the idelalisib.

[Chrisfer]

Hi June65

Maybe ask your doctor about magnesium and or potassium supplementation?

From my experience low magnesium levels can cause muscle stiffness and spasms as occurs in pregnancy sometimes.

Please ask a medical professional before giving supplements as it might be a bit more of a risk given the history of heart failure.

Good luck

Chrisfer

[Ernest2]

Hi June,

I think drinking is imoortant. Also I try to raise my legs/feet up on a soft support in the evening.

I got cramp at night both before FCR treatment and now after treatment as I've an issue at the moment with low red cell count.

When it happens the only thing that works for me is to walk downstairs and slowely walk around until it goes. Also drink a little water.

Tends to hit me if I've been out in the garden, but gentle excercise is important to maintain health.

Warm bath in the evening might also help.

Best of luck with the treatment, please keep us posted with how you get on.

P.S. I just remember some have also suggested tonic water. I have switched to that, with lime (no gin), but mainly in my case because I've stopped drinking alcohol for the time being.

Best Wishes,

Ernest

[WifeofCLLpatient in reply to Ernest2]

Be careful of tonic--there are some studies that tie tonic water to low platelet count as well as other problems cureus.com/articles/79736-d...

[henrymck]

I get occasional severe cramps in my legs. Blood tests showed a low vitamin B12 level for which I was getting shots every 3 months. However, this resulted in severe joint pain in both shoulders (shots are in alternate arms) and I was left to draw the obvious conclusion myself so I stopped going for the shots. I am into my 6th year of watch and wait. I have severe osteoarthritis in my hands for which I get cortisone injections. My haematologist is only interested in blood count and dismisses everything else as unrelated to CLL. At the arthritis meetings, everyone I have talked to there has some other major problem also but there is no one to join the dots it seems. I wish you well with your treatment.

[carnoustie]

I also get cramp in my feet and legs from time to time, mainly at night. This may sound crazy but I was told ages ago when this first happened to lie on my front in bed and hang my feet over the end of the mattress at right angles to my legs and the cramp would ease off and go away! If I catch the cramp before it gets too severe this seems to work for me. It's easy, no cost and involves no supplements or drugs. As I say, it sounds crazy and too good to be true, but it mostly works for me!

[J-moss]

I also get cramps in my hands and feet mostly at night. I think if I don't drink enough water they are worse. I also sometimes get pain in my my left ankle and foot when I overdo outside work. I am w and w, stage 2, have recently been taking a 5 mg dose of ratlin for fatigue, had cramps before that, trying to get approval to take a second second 5 mg in the afternoon.

[Soflajoe]

Thigh, calves, and feed. Never know which. Sometimes a combination. Always at night.

Diagnosed with CLL 4 years ago and those cramps started about the same time or a little earlier. Usually can tell what kind if night I'm going to have when I first get into bed. Sounds crazy. When it happens, I usually jump out of bed and walk it off. It could last for 10 minutes or more on the bad nights. It can sometimes be overcome by pointing one's toes upward toward head and holding it. Over the past 2 months I have been concentrating on placing a pillow between my legs and assuming a fetal position which won't work if you sleep on your back. It has also been helpful to keep ones feet warm. I guess one needs to find their own nitch. Tried all the supplimenets..as well as prescription for RLS..Without success.

Best of luck battling the dragon..stay strong!

[june65]

Thanks everyone for your replies. It's good to know that he's not the only one suffering this problem!

[MsCLL CLL CURE Hero]

Warning using Quinine to treat muscle cramps. medscape.com/viewarticle/77...

Muscle cramps are a common problem for CLL patients. It appears to get worse as lymphocytes levels climb as you get closer to needing treatment they can be quite acute. The wake you up out of your sleep type. I get up and have to walk until it subsides. After treatment of chemo they totally disappeared until again my counts started to climb. When I started on imbruvica they again became quite acute. Nightly episodes waking me up out of my sleep.,I know many patients with these acute muscle cramps when on imbruvica. This side effects appears to decrease over time for patients as they get closer to normal WBC levels.

[manzelka]

My husband who has CLL has been having muscle spasms, cramp really badly,it wakes him at night. He also has it during the day,it's not particular about which part of his anatomy it attacks.

His Haematologist gave him quinine pills for a month which helped but he hasn't had them again as I understand there are some issues with quinine.

So your husband has all our sympathies. We will be asking for more advice from his Dr at his next appointment at the beginning of next month.

[Kjohnsonmay]

At first the muscle spasms occurred overnight. Now I cannot drive for more than an hour without spasms in the lower leg and numbing of my feet. Untreated, WBC 120,000, Afib with pacemaker, Etc.. I really do not know cause. Cramping with and without compression stockings. Maybe arthritis in spine. Would really like a new body!

Karen May

[AussieNeil Partner Administrator]

Hi June,

As you can see, your post on behalf of your husband shows that he has plenty of company with this painful condition. (I hope you don't mind that I've changed your title so other readers that use different terminology know what's being discussed.) Judging by the number of times this topic comes up for discussion on CLL forums, there does seem to be an association between CLL and cramping. Prof. Terry Hamblin even blogged about it here:

mutated-unmuated.blogspot.c...

Those that have mentioned quinine, which has fallen out of favour due to concerns about the health risks associated with its use, will be particularly interested in Prof. Hamblin's thoughts on that, though perhaps it's best to exhaust other remedies first...

I too seem to have periods when cramping is more common and mine nearly always hit in my calves just after I wake up. I've found rapidly getting out of bed and gently and increasingly putting my weight on the affected leg then walking it off seems to work best, but I still feel the effects for several hours at least. I'm dreading the day when I get cramps in both legs on the same morning!

Neil

[Psmithuk in reply to AussieNeil]

Had that when I was pregnant many years ago, but can still remember the ouch!

[mgh348]

Hi all, I was diagnosed about four years ago at 68, am on w&w. Just found this forum and really appreciate it. Get really bad cramps at night in my feet/toes mostly, but it has subsided since the weather has gotten warm (I live in Florida). During the winter, I found that sleeping with socks and keeping my feet really warm seemed to help. If I get a cramp, I have to get out of bed and walk around, and if it's really bad, soaking in hot water will relax the cramping. I'm so glad someone posted about this, because I didn't know it was related to the CLL, and was always wondering what was causing it. Had tried magnesium but that didn't help.

My main concern at this time is fatigue, which hits suddenly during the day, and is unpredictable. Some days are ok, with energy to accomplish some things, but on other days I am exhausted and have no motivation to do anything. It has really helped to read that others experience this also.

Thanks, Maxine

[PaulaS Volunteer in reply to mgh348]

Hi Maxine,

Welcome to the forum. Glad you found us.

I can relate to your problem with cramps in feet and toes. I had very occasional cramps before I had CLL, but only in my calf muscles. Now I rarely get cramps in my calf muscles, but in my feet and toes. It was a nasty surprise when it first happened.

Now it often happens - only in bed, never when I'm up. It's usually just in my little toes, which feels really strange and almost like a joke, but it's very painful. Like you, I have to get out of bed and walk around, or push my toes upwards as hard as possible. And also like you, I find that wearing warm bed socks helps. Sheffield (in northern England), isn't warm like Florida, so that means bed socks all year!

I just read the link Neil posted about cramps, from Prof Terry Hamblin's blog. I found that very helpful. Prof Hamblin didn't find a definite correlation between CLL and cramps, but recognised that it was a problem. And the comments from people in response to his blog were very interesting. I had thought that the cramps might just be due to my increasing age (66), but now I have some hope that when I start treatment and my lymphocyte count drops, the cramps will also go away...

Sorry to hear that you also get very tired... As you've already noticed from this forum, you're not the only one... No easy answers to that one, though there some things you can check out (that cause fatigue) that I expect you've already read about on this site.

Wishing you well,

Paula

[mgh348 in reply to PaulaS]

Hi Paula,

Thanks so much for your response. I usually read postings from this site on my phone, but don't see responses unless I'm on the computer, which I forget. So, sorry for not acknowledging your post sooner.

Best wishes,

Maxine

[kathypawpaw]

Yes, I had cramps in my legs while sleeping which are referred to as "Charlie Horse" hurts like crazy because your muscles cramp up and lock. If it is in your legs pulling your foot straight up toward your leg will release the cramp. This really works. I noticed this happened after I had a lot of salt before going to bed. (Very unusual for me.) Stopped the salt (which in this case was rice cakes) and it hasn't happened again. Hope this helps.

Kathy

[Newdawn Administrator]

I'm having horrendous cramps in my calves on waking. I daren't even move my feet when I wake because it sets it off. I'd started on a magnesium supplement which certainly helped a little but gradually forgot to take it. It's something I'm going to mention to the haematologist at my next consult though I'm not expecting a great deal of joy!

Newdawn

[Susanjustice62]

Hi, I was diagnosed 2008...treatments 2012...fixing to start treatments again January .

I have been having bone pain and cramps in my legs. my primary physician tested me for vitamin D. levels were low....been taking vitamin D3 for several months....really helped. but now I have cramps and or spasms just under my right rib...anyone experienced that and found a way to calm it down?

[mombasa333]

Just saw this and sorry for the late reply, but goodness gracious yes.

My remedy? After 3 nights with minimal sleep I grabbed a heating blanket and slept on top of it. Problem solved.

[SethB34]

Late replier here. Yes, I am having muscle spasms. Seems to be rather common in CLL from what I’ve gathered from the above posts.

[Gretsch6120]

In response to the many questions about the cause, I can tell you that I’m sure it is the imbruvica. Started full dose when I went on it about a month in. Cramps started. Went off for two weeks ( because of complications, rash, mouth sores etc. Cramps went away. Started a lower dose 280 mil about six weeks now and the cramps just started to comeback but not as severe.

[AussieNeil Partner Administrator in reply to Gretsch6120]

I've needed to take magnesium tablets daily to avoid painful leg cramps for the last few years of watch and wait. I had to stop taking them when I started on a clinical trial. In the first month of the trial, I was just on acalabrutinib, a second generation version of ibrutinib. Even without the daily magnesium tablets, my cramp incidence and severity reduced, but a nurse suggested topical magnesium cream for the times I did get cramps. That tube of magnesium cream was rarely used after a few months on the trial, so I consider the cramps were due to the CLL, not the treatment for me. We are all different and acalabrutinib is more targeted than ibrutinib. What's important is that there are solutions available. I'd recommend trying magnesium tablets or cream first, before experimenting with dose changes, whjch of course should only be done in discussion with your specialist. I had relief from the cramping within a minute or so of applying the cream.

Neil

[Gretsch6120 in reply to AussieNeil]

My wife uses the cream works for her but not for me. ( She gets leg cramps) I will try the tablets.

[rcusher]

I have been on Ibrutinib for 3 1/2 years now and I take a magnesium pill in the morning and 1 at night. If I start to get cramping in my legs and hands I immediately apply magnesium oil and massage it in which usually always gets rid of it. Also remember to drink lots of water.