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.
Looking on the internet:
First the late/great Professor Terry Hamblin:
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:
There are probably more references to leg/muscle cramps in Chayas work, but found the following:
Also this one (search for “muscle cramps”) and then read again from the start (Can anyone verify this one is still valid and provide any updates):
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,