Rapid rise in lymphocytes and leg pain

Hi all has anyone had severe leg pains and cramp accompanied by increased lyhocyte count?have got crippling pain and count has gone up from 53 to 78 in less than a month! Have routine consultants appointment beginning of January. Are the two things connected? Would appreciate some comments if anyone else has this problem and if the leg pain is just part of cll? Thanks

32 Replies

  • Hi Speckly. I have pain in left knee. Knee consultant thinks mine is cartlidge damage, so might not be the same as yours. Going for MRI on knee on 18th, will post my results.

    My wife thinks it's a lifetime of abuse, specifically 35 years as a Morris dancer!


  • Well I can't do Morris dancing!Good luck! Hope MRI goes well

  • Hello Speckly, I have had cll since 2010 and have had tingling and cramp-like pain in feet and legs ever

    since. Actually the pain started about 18 months before diagnosis. My pain is not connected to my

    lymphocyte count though. My count has remained fairly stable. Hope this can be of some help to you.

  • Thanks for this just wish I could find put why it happens

  • Hi Speckly

    Sorry to read of your discomfort and concern over your sudden lymphocyte count rise too.

    Not everything is CLL and lymphocyte counts will fluctuate in response to trauma caused by other issues and infection too. I would recommend you talk to your doctor who can also asses your holistic health and rule out other potential issues ahead of your meeting in January with your CLL specialist.

    Best wishes


  • Thanks Nick

    I saw the doctor yesterday who has not a clue but tends to feel I have an infection and has put me on antibiotics and pain relief patches that are opioids as the pain is horrendous.hope the consultant can shed some

    Ight on it . Last year I had gangrenous gall bladder and my count went up to 88, so not something new. Your ad vice is very welcome

  • You might have pelvic nodes enlarged pressing on nerves, causing leg pain.

    Time to see your CLL specialist... perhaps you can move your appointment forward a few weeks?

  • Guess they can't fit me in before Xmas but will ring and find out. Had a full physical exam last time and nothing was felt but it is a thought. Thanks a lot

  • Deep nodes, often can't be palpated... ultra sound perhaps, but a CTscan or MRI might be more productive.

    Obviously something isn't right... but some patients experience very bad Charley Horse type led cramps. For me they were extremely bad for a month about a year after diagnosis, and they never returned...

  • Will ask them about checking it out thanks so much

  • Speckly, I have very bad leg pain due to compressed sciatic nerves but this was established by an MRI scan ordered by my Haematologist to eliminate any CLL involvement as illustrated by Chris above.

    I think you should push for more diagnostic testing because persistent pain is indicative of an underlying problem which may be totally unconnected to your CLL, structural or indeed nodal involvement. I also suffer cramp which I've never had before.

    Good luck and hope you get sorted.


  • I just want to say the support and advice has been amazing. Have not really felt this bad before so really appreciate the ideas and suggestions and not making me feel a freak! Many thanks everyone

  • Hi Speckly,

    I have had leg cramps and some nights I feel like I am a member of River Dance. My WBC has also increased over past 5 months from 50s to 76. I currently have wrist and arm pain, been diagnosed with Tennis Elbow. last Christmas was told that the pain in my foot was gout however now told I have arthritis in my toe! I do not know if this is related to CLL but I started having these problems about a year before diagnosis which makes me think that there may be a link. I would do as others have suggested and go to your GP asap and request a sooner appointment with the CLL or at least a telephone discussion. Good luck, hopefully you will get some relief soon.x

  • Whatever the link might be it does seem very wise to go and find out. Will let you know if there is one thanks

  • Hi. I am 46, diagnosed cll 2007. Fcr led to MRD. Ebv in 2011. Relapse 2012. Fcr again. Failed. Bendamustine. Failed. Now ibrutinib. Gp is fairly useless. All parts of body hurt at various times, but I am able to play individual sports. I take ibuprofen and paracetamol. Re diarrhoea I take two tablets of Imodium any day that I need to. Can I take glucosamine? Should I? Eg now I have a swollen knee. A week ago it was a swollen ankle....on the other leg! Wrists fingers hurt etc

  • Hi speckly..CLL 3yrs ..I am having the same pain hands and fingers and I find it is mainly right side.I put it all down to refux med which I have since stoped 2 months ago pain still there.So I guess this is part of the desease..majority t cells very painful..I am still on watch and wait.Dr told me fluids electrolites are good to help cramps.Good luck

  • I also have very painful leg cramps at night. Also my fingers seize up sometimes during the day. I am on Ibrutinib but don't know whether it is a side effect or just a symptom of CLL. My consultant recommended tonic water for the leg cramps. It is a painful condition but relative to the amazing effect of ibrutinib I fear it is something which one has to put up with.

  • Dear Speckly, Sorry to hear about the leg pain. I suffered from leg cramps and foot pain which got worse as my absolute lymphocyte count approached 200k. Ibrutinib treatment with a subsequent lowering of my ALC, a magnesium supplement, and tonic water have helped. I don't know if this will help you, but my concern for you is the rate of increase of your count. It may be a temporary blip, you may have some sort of infection going on, or you may need to start treatment. Don't despair; I am sure your doctors will get to the bottom of what is going on. Meanwhile, be sure to stay hydrated.

  • Thank you for your concern. The whole process is a mystery to me! I feel it is an infection as had a similar rapid rise this time last year with a gangrenous gall bladder. Went from 36 to 88 then back down bu has been creeping up since but a jump of 25 in less than a month indicates something. Sometimes I wish I could just go for treatment but sometimes I hope to avoid it until it's absolutely necessary! I have been luck so far as I have had cll for 9 years and nothing major has happened. Hope you are now in complete remission. These new drugs are amazing aren't they?

  • Dear Speckly,

    I had severe cramps and fatigue both times my CLL progressed.

    We found multiple causes including low iron, low D3, reactivated childhood diseases and even a HHV-6 virus.

    Diagnosing took lots of testing and patience. Treating each helped reduced fatigue & cramps somewhat, and some treatments lowered WBÇ & ALC.

    Suggest you assume you are immune compromised, and seek doctors with that experience in addition to a great CLL expert.

  • Thank you again. My GP is very good and my consultant is lovely and top of the profession. Am ringing him Monday. Very interesting to hear others have had similar experiences .hope you are ok now

  • Hi

    Sorry to hear about your problem but it seems a lot of us have the problem but without any accurate diagnosis. On balance I do not think the increase is related but I would say it may have something to do with your CLL. My GP but it down to dry skin with itching and prescribed hydromoil but it has not helped the cramps neither has tonic water. My CLL consultant thought it was a problem with the veins in the leg. The cramp goes from hip to toe but the itching is from the knee down to the toe.

  • Professor Terry Hamblin on leg cramps and CLL:


    "...but the one thing that always worked was quinine 200mg at night. I prescribed this for 30 years without mishap, but lately the pharmacologists have advised against it because of the rare occurrence of quinine induced immune thrombocytopenia. The reckon that leg cramps are not severe enough to warrant the tiny risk. I tend to ignore them."

    Is Quinine in Tonic Water safe?



  • Hi Speck first post here <email address deleted for your safety - Admin>

    I have severe left groin whole leg & foot constant not throbing cll and too many CT scans causes lots if cell problems 

  • Hello Speckle :)  I am new here, feel like small little girl going into  first grade class all aline and afraid.  I have had severe left leg pain that started in my left groin 2yrs. ago.  The most frustrating thing is that my doctor does not seem to possess the ability to hear me...although does have two ears!  Keep in touch? <email address deleted for your own safety - please read your PM from Admin>

  • Don't know if anyone is seeing my comments all so very new to me.  OVERWHELMED

  • Knock knock.  Does anyone use this support 

  •   Knock knock.  Does anyone use this CLL SUPORT site to rattle our woes about?

  • It's hard enough dealing with the diagnosis, but when you are alone, I definitely feel communication with others that are going through the same thing would be helpful to all that so desire to share their journey.  Perhaps there are better support - discussion sites that anyone who reads this can be so kind as to send the info along.  Thanks everyone and  G.B.Y. all.

  • Hi 288kingstreet and welcome!

    I'm sorry to see you are not getting a reply to your responses here, but unfortunately that's a consequence of you replying off-topic to Speckly's post on a busy site, with the consequence that other replies in Newsfeed are pushing your replies down the Newsfeed list (which includes all responses to all the site posts).

    Write your own post introducing yourself and I'm certain you'll have plenty of replies and quickly find that you have found a very supportive site for those living with CLL who know what it feels like to be newly diagnosed with an incurable blood cancer: support.healthunlocked.com/...


    PS, this site is one of the most popular CLL support forums in the world, with about 1,400 members involved each month.

  • Hi 288 Kingstreet,   Welcome to the group!   I'm sorry I didn't see/hear your "knock knocks" till this morning.  As Neil has just said, more people would see your comments and respond if you wrote a new post of your own. So I do hope you will do that, and not give up on this group. It's been a lifeline to me, and to many others.

    I could really relate to  you saying you "feel like small little girl going into first grade class all alone and afraid."   I often feel like that, even at the ripe old age of 67.  I think many of us here do, in regard to CLL.  But it does get better with time... 

    Anyway, please do write again in a new post. I look forward to talking more to you later. 

    Wishing you well, 


  • Ooo Kingstreet, as Neil and Pauls have said, we can't have you thinking the good folk on here aren't hearing you. Causes me physical pain to think of it! So sorry your shout for help has been lost pinned on the end of another post but I can see that you might have thought it was the right place with being related to leg pain.

    This is a vibrant and supportive site and if you start your own post telling us a little about yourself, you'll find that the warmth of the community reaches out to you. Remember to tick the little box restricting it to the community though and don't post your email address because there's too many weirdos and opportunists out there looking for email addresses to exploit! 

    Speak soon,


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