Achy legs and CLL

[Gardengirl44]

Hey group! One of common symptoms are achy legs. Those of you that have that symptom know what I mean…. Just an achy feeling similar to post workout exhaustion . It comes and goes . Do any of u that have similar and what do u find provides most relief? It’s quite annoying .

[Jacksc06]

Hi. I also get achy legs if i sit for too long and cannot get comfortable. i find the only respite i can get is to get up and move.

[wellbeingwarrior]

Thanks Gardengirl44 . I have a constant ache in my left lower leg for ages which I’ve found weird and did mention to my GP. I’m very active so it isn’t exercise induced and it is only experienced when not moving (eg resting and in bed). Have you found any explanation for this?

[Walkingtall62]

Hi, I had ‘achy’ legs not long ago. Even aching bones at the top. Hot water bottle in bed helped. Turns out I had low Vit levels. Much improvement since I had large dose of Vit D. Just a thought

[KkCreative]

My husband who has CLL describes it exactly as you do, so you are not alone! The doctors simply says to pace yourself and not to overdo on any particular today. Best wishes!

[Elizabetha]

I too have what I call "river dance "legs. Some nights are really bad , last night my husband had to sleep in the spare room as I kept "dancing " while fast asleep. I wish I could find out why and more importantly how to ease them! Good luck Gardengirl44 😘

[SLLJOHN]

I can sympathise….I’ve had it both with Ibrutinib and Alcalabrutinib. Today I feel good, previous few days terrible….no rhyme or reason to it!

[kablea]

This is an interesting topic. As a runner I have been concerned with aching legs for some time. I take vit D and pushed up my fish oil intake on two meals each week. Other pointers include not eating enough protein. I calculated my wife and my protein intake and it was on the low side. This contrasts with the latest evidence that we need more protein as we grow older, particularly to maintain bone and muscle strength. Consequently, Ann and I are consuming more yogurt and cottage cheese each week. This will be a trial over a few weeks. The protein should be first class so that means animal based. Supplements or plant based just don't seem to work.

[keeptalking]

My legs have been aching and painful for about 18months. Comes and goes. Worse in bed and if sitting too long. Eases if I can keep walking. Best description is sometimes feeling my legs are wrapped in tight bandages. Restricted movement especially when starting to stand. Painful knees (no arthritis). Stairs are dreaded.

You’re certainly not alone.

[LeoPa]

Are we talking restless leg syndrome or a feeling of fatigue in the legs? For the first one chelated magnesium should work. For the second one, which can be caused by chronic venous insufficiency it's Detralex.

[BallyB]

I have the same issue with my legs. It seems to be correlated with playing golf, biking or hiking. May be dehydration or CLL, who knows. Many of my friends, in our 70's without CLL report the same issue. The problem occurs at night, so I often sleep in the guest bedroom. Compression socks are very helpful for me. Another folk remedy is dill pickle juice. I bought a gallon of it on Amazon.

[Newchallnge]

I do as well. How do we know it’s related to CLL and not just being out of shape etc.?

[CycleWonder]

I get cramps after a bike ride if I don’t drink a sport’s beverage with potassium and other minerals. Continuing to move after a ride is helpful. My problem is that I have developed heartburn and many sport’s drinks include citric acid. I drink one anyway but try to drink it in the afternoon.