Hope you are all enjoying a really great Christmas.
Been meaning to write about night time leg cramps, an issue that I think affects many of us as SLL/CLL progresses. I’m now at the end of round 1 of FCR treatment, so have some “before and after” experience.
Over my 4 years of Watch and Wait, the night time leg cramps steadily got worse in intensity and frequency. I’ve assumed (perhaps wrongly) then that is related to the blood counts somehow but I’ve never understood which ones and how.
I see Terry was thinking there might have been a connection with splenomegaly but couldn't prove it. I haven’t tried the high dose of quinine as it doesn't seem recommended now.
And Chaya Venkat. First for any HU readers new to CLL, Chaya is now “retired” from her (now frozen) website, after many years as a carer. It still remains a great legacy:
To some extent I have to admit the leg cramps I experienced were somewhat self-inflicted, being much worse e.g. after a day enjoying myself working in the garden. However it does say “get fit for treatment” so that was my interpretation. Also crammed in lots of repair jobs around the house as I couldn’t imagine being able to do them now during treatment.
I think all your advice on exercise was good though – thank you for that.
So assuming you have had your exercise, or even still getting the cramps without it, what can you do about it ?
There are lots things to get checked out with your specialist, the following from you good folk on HU seems to cover lots of areas:
Assuming you have drawn a blank, and there is nothing medically you need to sort out, what about practical measures?
I’ve posted before about raising your legs on something soft whilst sitting down in the evening, also the benefits of warm baths to get the circulation going. Both of those seemed to help greatly, until I got very near to treatment.
The other feature in my case from exercise was (and still is) more frequent trips to the bathroom at night time (about x7 visits in the worst case I remember). That can be tricky when you wake up with cramp in the legs and need to get to the bathroom quickly, without waking everyone else up . . .
I fitted a low power LED table lamp up on the landing for safety and to avoid losing time fumbling for the lights, and falling downstairs etc.
Have always found the best thing with the cramps is to get out of bed. Only walking seems to sort them out, so after a diversion to the bathroom, I always head downstairs and gently walk circuits of the downstairs floor until the cramps alleviate (I assume they aren't dangerous in any way ?).
You then get the walk back upstairs for a final boost to the circulation, to help stop them coming back for a few hours (in the worst case).
Only snag then, you can be fairly awake and the brain in gear again. There I have found meditation techniques useful to get back to sleep. Free apps are available on the internet, I can’t vouch for all these as I’ve only tried lesson 1 of one example and it did the trick (Many thanks). So anyone who can recommend the best app / book etc. they have found would be helpful:
Aside: With CLL fatigue I’ve never had trouble getting to sleep when I first get into bed . . .
The location of the cramps for me did vary, but usually in the lower part of the leg. Fortunately I don’t think I’ve ever had an attack in both legs at the same time which would be very interesting.
Now what about the effect of FCR treatment on the above after 1 round of treatment ?
I don’t like to tempt fate by saying this, but I think the leg cramps are gone, as I haven’t had an attack yet, and have had a couple of active days last week that I think (pre-treatment) would have provoked them. So far so good.
Shame I can’t say the same about the visits to the bathroom in the middle of the night, but one of the drugs I have to take with FCR is Allopurinol to flush the Kidneys, so I really can’t complain. Just try to drink lots of green tea in the daytime, well before bedtime.
I’m sure there are several errors and omissions in the above, so would be grateful to anyone who can correct me, and point me and the text in the right direction.
Also if you care to provide your experiences of the “feature” of leg cramps with SLL/CLL, and links to more past HU articles etc. that would be kind.
P.S. I haven’t posted here about pins and needles in the legs as (rightly or wrongly) that seems to be a different effect, and for me applied more in the day time. FCR also seems to improve that greatly.
Best Wishes to All,
Ernest.
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Ernest2
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Glad to hear you are over the first hump of FCR...
just a few things...
Allopurinol is an inhibitor of an enzyme called Xantine oxidase. Allopurinol blocks this enzyme, thus reducing uric acid production in the body... used to treat gout. It is used during treatment in CLL to reduce levels of uric acid caused by rapid cell kill, which can cause tumour lysis syndrome.
I would suggest you hydrate with water, rather than green tea...it has active indredients and caffine.
During treatment with RCHOP I drank 3-4 litres of water a day... if I dropped below that the 'charley horses' started in my calf muscle... my doctor told me to hydrate more, which worked well... I only had a couple of minor episodes...
The pins and needles may be the start of peripheral neuropathy, it is something you need to monitor daily and if you hand and feet start feeling numb, advise your doctor... FCR effects can be cummlative, so see if these develop further...
I had a track worn to the bathroom 3 or 4 times a night for years, PSA was good, but a prostrate exam revealed an enlargement. I was perscribed Tamsulosin aka Flowmax, and the nocturnal visits have totally stopped... something to talk to your GP about...
The NHS has a service that looks at and approves Health APPs for accuracy and safety etc... not certain what they have for meditation etc. might be a good place to start..
Many thanks Chris - lots of great advice and references.
Interesting to read a good explanation of Allopurinol and TLS etc. (Wonder if I should stop eating bananas - only do one a day these days, and now first thing in the morning to get me bump started)
Strange I have thought to myself why am I drinking so much green tea whilst now under treatment so will try swapping that for water (go back to the days when I used to drink hot water, that once you get used to it still gives you some of the feelings of Tea/Coffee). Thanks for that - strange if somebody says it to you, what you have parked into the back of the mind makes sense again and needs action.
I have been tested for Peripheral Neuropathy and conclusion was to wait for CLL treatment, and I have to now say that does seem vastly improved, although at the end f round 1 perhaps early days, and I think it can get better or worse, so have to wait and see, but good so far.
Have had recent PSA which was good, but long time since I had an exam so need to think about that. My own thinking is I probably just drink too much in the evening. It is great now though not to have the leg cramps when I get up.
Thanks for the reminder on the NHS apps review website.
Thanks Ernest, for a pretty thorough post on leg cramps. I've pinned your post and hope that it triggers lots of replies so that we can gain some community feedback on this rather trying malady. You've certainly had a bad experience with cramping and I hope your relief from this painful and temporarily debilitating condition becomes permanent.
I've certainly noticed more frequent (and often bad) leg cramps with CLL - mostly when I'm waking in the morning. I too have wondered how I'd go if I got cramps concurrently in both legs, but thankfully it hasn't happened. The strange thing is that I haven't had a cramp in the best part of a year now and don't know why the change. My blood counts certainly haven't improved.
You are quite right about the swing of opinion against the use of quinine, though I noticed that Terry Hamblin ignored that change in medical advice. I guess if quinine helps and your blood counts are not counter-indicative, then the relief from what can be excruciating pain may make it worth taking the risk. But hopefully we'll have replies about other safer, effective remedies.
Thanks Ernie, Chris & Neil, I certainly learnt a lot from these posts. I have been suffering cramps(bad) but put it down to steroids I was taking. Now I know differently. Do not have the knowledge yet to pass on info.
Just to say, I am now in remission but was was waking up with leg cramps and started taking a glass of tonic water before I went to bed. I also slightly increased the amount of salt I cooked with, sometimes I did not use any at all. The RESULT ... No leg cramps!
I'm early stage, so I think the theories based on tumor load and chemical side effects may not apply to me.
I find that some days, my fatigue lifts. On those days, I am so happy that I am very prone to overdoing everything - working around the house and walking.
I have a step counter app on my Android phone called Noom Walk. Frankly, it's not that great compared to a dedicated step counter. It misses many of my slow steps around the house, especially when I'm tired. But it lets me make notes about the day as well, and email the counts and notes for later examination. I use the steps as a proxy for general activity.
I can see that on my up days, my step counts go way up, and within a day or 2, I often get a "charley horse". In addition, my fatigue dives so deep, that I spend 12 hours or more in bed a day for the next few days. The fatigue symptom appears to be about 2 days after exertion. So I've been looking for many 2 day biological cycles, and the immune system has one or 2, as does digestion. When it comes to bodily senses, I have a low IQ. But I'm learning.
I do try to stay well hydrated, though on the days I go into work, I get less water than at home.
Along with the cramps sometimes are many tiny twitches in almost any muscle, but arms, legs, feet, and hands seem to be favored.
I also had the same issue at work, although bought a large mug to try to improve things. Snag I couldn't solve was the long drive home in queuing traffic at times so limited my intake in the afternoon, then up again when I got home (not good for the overnight situation)
Are you able to spread your physical activity out more. When in the rest days (after the active ones) I used to give myself a few hours in the morning, but then try to get going again.
Keep experimenting where you can, and please let us know how you get on.
I have sometimes had leg cramps at night but I think they were more frequent before I was diagnosed with CLL. I am stage 0 watch and wait after 6 1/2 years. Another reader mentioned enlarged prostate, I have also lived with this for a number of years. My PSA reading was OK but I was prescribed tamsulosin. My visits to the bathroom at night have gone down from 3 to 1
I had many problems with leg cramp during my four years of watch and wait and was given drugs such as Endep and Lyrica but it wasn't until after my treatment of FCR that my haematologist sent me to a restless leg syndrome specialist and he put me on 2mg. of Paxam per day that my leg cramps have reduced to being almost non existent. I might add that it was almost always my right leg and right arm. I also attend a hospital gym under the supervision of an exercise physiologist for one hour twice a week as well as walking 4 to 5 kms. once a week. Hope this helps. Regards Ron.
I'm wondering if others have investigated the possibility of magnesium deficiency (I appreciate from my research that testing can be unreliable/inaccurate).
Lately I've begun to suffer with painful leg cramps which is entirely a new symptom for me and increased nocturnal frequency (obviously I don't have a prostate). I've had glucose testing.
What I seem to come across as possibly implicated is magnesium deficiency and I'd appreciate views of others on this. Obviously I will check it out medically too but I find medics tend not to think outside the box sometimes on these matters.
I've been reading this article and whilst not easily persuaded by any kind of alternative theories, I am minded to try a magnesium supplement. Does anyone have experience of the magnesium oils being effective?
Interesting, as it mentions other things like fatigue that we suffer from as SLL/CLL patients.
I would ask your GP for advice on best methods to try it out etc.
Other idea - have you tried drinking glass of Tonic in the evening, which seems to work for some (don't think I'd go for high dose quinine with the risks there).
Also can you relate the nights with cramp to what you have done in the daytime e.g exercise levels, and the amount you are drinking (I'm ok there if I'm at home but always drink less if I'm travelling, and that isn't good)
Let us know how you get on - might be worth starting a new post.
I do wonder (assuming there is an issue) how much you can correct with diet:
Just wanted to give a little feedback on my experience of leg cramps and my theory on magnesium deficiency.
First of all an important disclaimer before anyone tells me off for recommending supplements that may not suit everyone and may be contra indicated. As always, I'd urge everyone to consult their physician before embarking on any supplement. In truth, I haven't because realistically I don't think he'd be sufficiently informed on the subject.
Having never suffered with cramps, I started waking with excruciating cramp in my calves and feet. They would literally knot hard especially when I stretched. So I did some reading and rightly or wrongly, I deduced that in my case, a magnesium supplement would be worth a try. And I consulted a number of respected sources before deciding not just 'alternative practioner' adverts. I read that 250 mg a day wouldn't cause problems but not to exceed 400 mg. I felt it was worth a try. And I researched possible contra indications.
I've been using them daily for 3 weeks now and haven't had morning cramp since. Could simply be a coincidence of course but this weekend I forgot to take them and I awoke this morning with severe cramp in my foot. I will mention it to my haematologist tomorrow but I rather think he'll simply say, 'if it works, go for it!'. Apparently testing for magnesium levels isn't always that accurate.
I'm not commending it for general use but it does seem to be working for me.
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CLL, leg pains, high colesterol, sweats, exercise isn’t helping anymore 😢
First time posting (Question)
CLL and Heat (Night and day sweats)
Weakness in legs and feet. 
CLL W+W related(?) back/ leg pain
