My white cell count is 16.26, lymphocytes is 7... - CLL Support
My white cell count is 16.26, lymphocytes is 77.6%(abs 12.62), is this likely to affect my health. I feel tired all the time
It already has effected your health...your immune system is compromised to some extent.
Fatigue is a common complaint of CLL patients, but it is poorly understood and rarely
studied. Many doctors see no relationship with CLL.
Generally, it is something we have to live with, my fatigue became so severe I was forced on
long term disability a number of years ago.
~chris
Hi there does not always seem to be a connection with blood levels and what I call a lack of wellness, which includes fatigue. The only thing that I find that helps is pacing myself and not trying to do too much. Best wishes.
My White Cell Count is only 11.3 and Lymphocyte at last test around 7.6 I have been working full time in the last few weeks and am wrecked. The fatigue is shocking and now my lymph nodes in the neck have all swollen up causing considerable pain. I'm forced to just lay around, take it easy and hope that l'll be ok tomorrow in order to go to work. It has done this off and on for a number of years now ! Rest is all you can do.....If you can ?? Take it easy
If you haven't had lymph node involvement before I would suggest you go and be checked by your haematologist/oncologist. Relying just on lymphocyte counts to track CLL disease can be misleading. My wbc was never that high but I was riddled with enlarged lymph nodes. Docs should be looking at the whole picture. Wading through treacle is no fun!
Good luck yunusvali, and very sorry you are feeling so tired. Maybe one thing which some find hard is also to be kind to yourself and give yourself permission to take it easy, too
Is there yet, I wonder, sufficient recognition of this problem - unwellness/tiredness? Or is it just the four of us?
With lack of recognition will there ever be more progress to address the issue, or help people to deal with the tiredness and its impact. With lack of recognition will we continue to be dismissed by doctors, and have then to deal with the difficult emotions that this may generate. Or go round in circles wasting time trying to find out what else might the cause in fruitless search for a solution.
It also becomes quite difficult to take my own advice above. After all if there's no reason for me to feel tired/unwell then the suggestion is that it is all in my head so (in my head) sort head out, pull yourself together and get on with it.
Is there any body of research into fatigue/unwellness? Or is it commentary and opinion?
I was dx ten years ago in 2003 aged 44 and still watch and wait, Lymphocytes now around 22, have taken around 5yrs to double. Tired and fatigued for most of this time which is not relieved by rest and sleep.
I quote from a letter following a recent requested consultation with Prof Pettitt " .... I think her tiredness is most likely related to Vit D deficiency and/ or depression ........"
Anybody else had any luck with Vitamin D I wonder?
A recent test had found a Vit D deficiency (just prior to my visit to Prof Pettitt, and he was aware of that result). So 10 days of 40,000iu of Vit D3 and I felt like a million dollars for a month or so. I was so happy. A miracle. My husband just this morning on what a difference there had been.
Today, six weeks later back to tired, weak, aching. Still, concentrating better - less muzzy headed. But struggling to get on with the day to day household chores, let alone fully engaging in life. Maybe I've got a bit of a bug, but 10 days so far.
I accept that fatigue could be a due to many many things, but am heartily sick and tired of being told it's due to depression. Feel more likely it's vice versa. I may well be at times unhappy, but it's not a bundle of laughs doing battle with feeling too tired to function, and to have self confidence eroded by a lack of self sufficiency, due to feeling too unwell/ fatigued to cope. .
I have had periods of taking anti-depressants which don't seem to help, and I'm certain they cause night sweats, so disturbed sleep and tiredness. Not taking anti-depressants, no night sweats.
I used to manage a job and family, was studying for a degree as a mature student in 2003, was often the one organising events and family get togethers, liked to be doing things, doing new things, game for a laugh, get roped into committees, love have my young nephews and nieces over to stay. Bit by bit this life has disintegrated, as I feel less able to commit to an arrangement or a new project. I certainly couldn't now cope with a job for goodness sake, so have been dependent on my husband for finance, also 99% of the shopping and cooking. I frequently struggle to find the energy to stand in the shower, without feeling am going to collapse..
Is it just me?
If not anybody else have bad times with fatigue over a period of time and then reasonably OK for a period of time?
Elaine
You make interesting points there Elaine (and sorry you're battling such debilitating but fluctuating disease). And no, it's not just you!
I have a theory about this which has no scientific foundation but was hypothesised by my very pragmatic and technical husband who has only minimal understanding of CLL (but masses of empathy).
We were discussing this unexplained pattern of fatigue and how it often has little correlation to 'numbers' or even recognition by some medics. He said that he would see tiredness as an obvious result in an immune compromised system where at any given time we could have no idea what the depleted 'warriors' were trying to fight off. The suggestion was that the human body doesn't actually see being awake or conscious as a higher function (hence the reason it switches off during extreme trauma) so at times of greatest internal pressure, maybe it's primary concern is fighting off 'invaders' (infection) and protecting what it sees as the 'higher functions'. So at times of greatest pressure, all the energy is directed elsewhere?
Now the very clever medics and scientists will probably say that's nonsense but it helps me to cope because I feel my body is doing a valuable deal with me. And I'm happy to be in partnership with any process that might help even though it can be as frustrating as hell.
But that's my changed reality and I've got to rationalise it somehow and roll with the blows!
It's a cop out for medics to blame depression. Clinical depression is not just the absence of a happy face, it's real and it's measurable. Anyone who remains in a state of joyful exuberance with CLL is worryingly deluded. Of course we're fed up, maybe even suffering a reactive depression in some cases but tiredness in CLL is something else. And just because they don't always know, doesn't mean we don't have it.....
Sending warm best wishes to all,
Newdawn x
Thanks also for the reply Newdawn. Yes, that's a very plausible explanation indeed.
Best wishes to all too.
Elaine
Newdawn, I've had similar thoughts to your husband. It makes a great deal of sense to me that we are going to feel fatigued if our bodies have more difficulty fighting off infections or getting over subclinical infections, particularly when you remember that many of us don't have the same degree of raised temperature response to an infection compared to someone without CLL. There is also the uncertain systemic effect of all the cytokines being fired off by a much larger than normal population of B-lymphocytes.
ElaineW, I found increasing my Vitamin D serum levels to within the normal range definitely helped my fatigue levels and lessened the next day impact of any exercise. There was a definite correlation between a reduction in 'off' days following a busier day and taking Vitamin D3. That said, I still find fatigue - both physical and mental (difficulty concentrating and taking much longer to think through tasks if you can even do that), one of the hardest symptoms to live with. It is a commonly reported symptom and unfortunately commonly dismissed - particularly if your haemogloblin/ red blood cell counts are OK. It can certainly be a vicious cycle; you're fatigued because of the CLL and possibly more frequent infections, so find keeping fit an effort at best, which means you lose fitness so that you get more tired from exerting yourself. It gets easy to overdo it, which means more down time in which you lose fitness all of which can be very depressing which further makes putting in that extra effort that is required even harder to achieve. In short, you just have to work harder at having a good diet, pacing yourself and work at maintaining your fitness levels. It takes lots of patience and determination along with understanding and supportive family, friends and work colleagues.
So yunusvali, you've unfortunately got plenty of company here. All the best in working out a strategy to live with it!
Neil
Elaine
I think that most of us, if not all, experience this tiredness/fatigue.
i was told when I first mentioned it to one of the Haematologists that I see (there are currently three at the RD&E, one of whom is a consultant, the other two are "Fellows", whatever that means) I was told that it is unrelated to CLL.
I think, and I place a heavy emphasis on the "think", they are eventually beginning to realise that there is a connection. Or are they just patronising me?
Before I was diagnosed as having CLL, I was fit and active, but was feeling increasingly tired (more than usual) after a run. Now, nearly eight years later, I am unable to get through the day without at least one nap - more usually a couple.
And it isn't just the tiredness that I experience after doing housework (yes, ladies, I do the housework!), walking the dogs doing a bit of shopping. This illness has destroyed my motivation to even begin the jobs. Everything seems to require a huge effort to even begin the smallest task.
So I get depressed, and that probably adds to the fatigue. The depression goes back a long way (but I won't bore you with that) - suffice to say that I thought that I had it licked (beaten) but now it's raising its ugly head again and the dreams are becoming more frequent. So that's probably adding more tiredness to the equation.
All the minor infections that I pick up also take their toll. I always know when I'm "coming down" with something, before the sneezing and the sore throat, headaches begin. I feel as if I'm trying to wade through setting concrete.
On another thread, several contributors suggested that one our members should change their haematologist. Is it that easy? In my case it would mean changing hospitals, and involve even longer journeys to and from appointments. And there is no guarantee that another Haematologist would be more understanding.
Anyway, time for another snooze!
Bootneck
I asked my GP to test my Vit D3 which he did willingly and it was found to be less than half the recommended level - have been on suppliments as a result and felt much less tired, also use a light box on very grey days. I recommended the test to another friend with CLL and she was found to be a 10th of the recommended level and has found suppliments have helped her. So whatever else is going on this does seem to have a positive effect on the energy level.
Depression and treatment for depression can also make you very tired and lethargic and loose motivation - so if you can avoid medication to lift the mood then try and do so. If you are on medication ensure you only stay on them while there is a benefit. Increasing the dose is not always the answer. Mindfulness and councelling can have a positive effect without messing with the brain in ways that are not fully understood.
