Does anyone have chronic aching of the legs, sometimes with a hot and tingling sensation of the feet?

[Parramatta]

[Cllcanada Top Poster CURE Hero]

Peripheral neuropathy? Not common prior to treatment but it can occur...more common after treatment for CLL, especially with chemo or chemoimmunotherapy.

en.wikipedia.org/wiki/Perip...

Also see

healthunlocked.com/cllsuppo...

[jwyllie in reply to Cllcanada]

I really noticed it after CLL dx.

[Newdawn Administrator]

Sounds like one for your doctor Parramata. I have leg pain and tingling/pins and needles in my feet which has been confirmed with an MRI to be due to sciatic compression. The sensations I experience (I'm pre-treatment) are nerve related due to back problems. They are not CLL related apparently.

Sometimes a scan is necessary to ensure there is no nodal involvement impacting and causing the pain and discomfort.

There's a whole range of reasons which would need medical diagnosis. I found these possible explanations helpful;

nextavenue.org/article/2013...

Newdawn

[jwyllie in reply to Newdawn]

Any hint of diabetese?

[ygtgo]

I don't have aching of the legs, but I get tingling in my feet, sometimes on my legs, and when I'm feeling bad I get it on my face.

It was diagnosed as neuropathy, for which I am on pentagabin 100mg x 3 daily.

It started after I was diagnosed with CLL, but I don't know if it is related to the CLL itself.

I am in my ninth year of CLL... as yet untreated - Watch & Wait.

[jwyllie in reply to ygtgo]

I too have neuropathy that onset not long after my dx for CLL.

[Parramatta]

Thank you all for your replies!

[willens]

My CLL Dx was many years ago, and over the past dozen or so years I have undergone most of the standard chemo treatments, always without peripheral neuropathy or other noticeable side effects. For the past three months, I have been on the new targeted therapy, Ibrutinib, which is doing wonderful things for my blood numbers and my swollen lymph nodes and spleen, but I am now suffering from aching muscles and especially joint pain in my hips, knees, and fingers. Discussed with my CLL specialist, who could not suggest any solution beyond Tylenol or possibly Tylenol with Codeine if pain is severe. He doesn't want me to use NSAID's out of concern about bleeding. This may or may not be your problem, but it sounds somewhat similar.

[Ernest2]

Thanks everyone for discussing and sharing on this one.

I'm currently still trying to get to the bottom of issue with Pins and Needles in the feet (Not had any CLL treatment yet but the clinicians are thinking this year now.)

Some have had vit B12 issues. I've passed the basic test (575 ng/L) a good result, but today gone for further follow up tests of Methylmalonic Acid (MMA) and Homocysteine - wait for the results on that.

I've also read about getting your Thyroid checked (I've passed that test also) also Vit D (passed again)

I am concerned that it may be back trouble, but the symptoms seem to come and go with fatigue rather than lifting / putting stress on the back. The effect is also fairly even between the two feet and for those reasons the clinicians don't think it is the back at the moment, but I'm open minded.

I do also get numbness (not tingling) in the face most days (worse on days after exercise) so from the above Neuropathy might be worth investigating ?

Also get leg cramps at night - we have quite a few good posts on that and how to avoid (in my case - raise the feet in the evening when sitting, and warm baths at end of days with exercise usually avoids).

Best Regards,

Ernest

[Hidden in reply to Ernest2]

Perhaps too obvious but are you on Statins? You are describing a situation which I've experienced since CLL chemo and it had gotten to the stage where I admitted to my consultant I'd been viewing electric buggies as the pain in my legs was getting too hard to cope with, if I dared walk.

He phoned my GP and they agreed a regime where we'd mess around with some of the pill combinations. The 2nd week hit jackpot, stopping the Statin along with Allipurinol (excuse spelling).

Now, I think nothing of walking for miles. Was rather extremely concerned for a while.

[DobiBears]

Hi Parramatta. I hope you are doing well. I was diagnosed with CLL about 18 months ago. My WBC is increasing but not doubling. I am currently at about 60,000 and in the watch and wait stage. I've had extreme leg aching and leg muscle weakness for a couple months and continues to get worse. I walk daily but stairs are getting very difficult. I tried to start doing leg exercises and couldn't hardly move for over a week even though I did not overdo it. Also pain and tingling in my feet. Even though everyone's oncology Dr's keep saying it isn't from the CLL, I don't agree. It can't be a coincidence that we are all experiencing the same symptoms. If anyone has any suggestions to relieve the pain it would be greatly appreciated. This is very hard to deal with and spouses and friends try but they don't understand what we are going through.