Does anyone else with Chronic lymphocytic leukaemia (CLL) have completely numb toes? My doctor said it was to be expected, but I also have pernicious anaemia and I thought that might be the cause. I’m on W&W since 2015 and otherwise only have the usual fatigue and bad bruising and cope well. Thanks for any experience you can share!
Hi @SpaceAngel I also have Chronic lymphocytic leukaemia (CLL), diagnosed in 2003, and numb toes, but the numb toes arrived when I contracted shingles in 2013.
My shingles still flares up anywhere in my body when I overdo it emotionally, physically or practically or when I overdo it it with what personally stresses me. My Rheumatologist says I will probably never shake the shingles off.
I have also learnt to live with and manage the usual Chronic lymphocytic leukaemia (CLL) symptoms.
I do not have pernicious anaemia.
I hope this helps
Thank you, Erica. I haven’t had shingles myself, so it must either be the Chronic lymphocytic leukaemia (CLL) or PA. I’m seeing my consultant the week after next, so I’ll ask him. It’s not a very pleasant feeling!
Hi @SpaceAngel I have got used to the feeling now.
I am interested to know what your consultant says.
Look after yourself
I dont have Chronic lymphocytic leukaemia (CLL) but I am anaemic. I often get numb toes and found taking 2 ibrupfens at night and in the morning helped massively to the point I only get numb toes when I miss a dosage.
Hi I just spotted this and it’s strange that you’ve mentioned this as I am worried about mine too! I have been having numb toes/tingling and my legs have been stinging and feeling like they are sunburnt. My finger tips are also numb/tingly. I have recently been told that I am anaemic, but from an iron point of view. I have definitely read in my recent google forays that pernicious anaemia can cause this so hopefully it might help explain things for you as you have it. I think I might pay for an online test to see if I have this as it’d explain a lot (I have given up with my GP surgery at the moment as I can never get through). I have been worried that I have got diabetes or circulatory issues as my cholesterol has been pretty high! I have something very similar to Chronic lymphocytic leukaemia (CLL) and am on W&W. I will write to my consultant about it and see what he says and report back!
Hi @lousyT if you read my response above I have Chronic lymphocytic leukaemia (CLL) (17 yrs) and I am on watch and wait. I believe my numb toes is due to shingles 8yrs ago.
Hi Erica, thank you. I’ve not had shingles and it’s the first time I’ve ever had this. I’ve emailed my consultant to see what he has to say!
Hi I’m on WW for Chronic lymphocytic leukaemia (CLL) and my big toes feel numb. Just had my bloods done which are at 18 which consultant says he’s not worried about. Everything else okay. I forgot to ask him about my toes so would be good to see what your consultant says.
Yes, @Shelz please do let us know what your consultant says, look after yourself.
I have Chronic lymphocytic leukaemia (CLL) and although only diagnosed 2018, it is suspected that I may have had it many years. I started treatment with Acalabrutinib in September with good results so far.
I have had what I call my cold legs for a really long time, I get quite severe cramp and numb toes. My top half can be really warm whilst my legs are so cold.
My consultant doesn’t think it us Chronic lymphocytic leukaemia (CLL) connected and just suggested that if it does bother me, I should see my GP. After a cramp attack, I think I will ring but there are never appointments available.
Hi @Kitchengardener2 keep ringing, we have to start ringing as the surgery opens in the morning and then it is usually a phone appointment!!!
It will interesting to hear what your GP says and whether they pick up on the cramp side and/or your ‘cold legs’.
I get numb toes with Myeloma. Had lots of problems with pins and needles and pains. I think I just take it all my stride now as I’m used to it, but that doesn’t make it any pleasanter. Hope things get better for you.
Hi @SpaceAngel did you find out anything from your consultant? I emailed mine and he said that it could definitely be to do with blood cancer but that he would talk to me about it when I see him. Strangely mine went off a bit yesterday, but I’m sure it will return!! Take care x
Hi everyone, just to let you know that my consultant doesn’t believe my numb toes are related to my Chronic lymphocytic leukaemia (CLL), but more likely my pernicious anaemia!
I’m anaemic and I get numb toes… usually a few ibrupfens sort me out though
Hi I have Chronic lymphocytic leukaemia (CLL)/Small lymphocytic lymphoma (SLL) for 2 years since diagnosed but would have had it for several years prior. No treatment on ww and 6 monthly blood check reviews age 70. For the last month or so my big toe and second toe on both feet have had a weird numb feeling and pain in joint of one big toe for several days which has subsided. So curious to know if others had it and voila ended up here.I was reading where lymphoma cells can attach to certain proteins that damage nerve cells and cause numbness and tingling fingers and feet. But said this neuropathy was rare. Interesting to see I am not alone with this weird sensation.
Hi @Russ6258 a great big welcome to our forum, I have had Chronic lymphocytic leukaemia (CLL) for 20yrs and have always been on watch and wait (active monitoring). I am 74yrs old.
When we went through, what was for me, a stressful house move 10 yrs I contacted shingles and got and have had numb toes since then. Any stress since and the shingles reappears anywhere on my body.
My fingers are OK.
You are not alone, although there might be a different cause.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses in case they have any comments.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Please do keep posting as I look forward to hearing more about you
Look after yourself
Thank you. These forums are a great support and help.
Hello there @Russ6258 and welcome to the forum. Sorry to hear that your having some problems with your toes in both feet. As you mention, neuropathy is relatively rare in Chronic lymphocytic leukaemia (CLL). I would repost it to your Haematology team or your GP if the discomfort continues. it may of course be unrelated to your Chronic lymphocytic leukaemia (CLL) so worth having a general assessment too.
We do have some information on Peripheral neuropathy (nerve damage) | Blood Cancer UK if it is useful?
If you would like to talk anything through, please do get in touch Blood cancer information and support by phone and email | Blood Cancer UK