I'd really value your opinions. I've been "watch and wait" for 18 months. Recently my bloods results haven't been so good. But my general tiredness lately has REALLY worried me. I'd love to know how others cope. I work full-time, and it's a reasonably stressy job - but I'm starting to worry about the utter fatigue I'm feeling. Sometimes I struggle to get through the work day.
Is this chronic fatigue part of the CLL? Is there anything I can do to fight it? I haven't mentioned it to my consultant yet because I need to keep working to pay the bills.
Really appreciate any thoughts....
Thanks
David
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Others do report fatigue as a problem, and I've discussed it with a few people at CLLSA meetings. However, to date I've been 'lucky' and it has not really hit me.
I retired in Aug 2013 but from an office 'type' job which involved alot of travel. In December I started renovating a house so do feel more physically tired. CLL may or may not be involved in my tiredness, my solution by the way is to have a drink and something to eat and after 20-30 mins everything seems to be firing on all cylenders (well most) again. What I have noticed is nowhere near as extreme as what others have told me, so as I said 'lucky' I guess.
This is a good place to ask about experience but you should highlight it to your medical team as well so it is doumented to them.
Severe fatigue is one of the key issues that seems to affect CLL'ers compounded by the fact that it's not always universally accepted as a debilitating symptom by medics...and employers! I feel for your position because you need to work full time but are clearly feeling the strain.
This is an old but nonetheless relevant article from the late, great Prof. Terry Hamblin recognising fatigue and possible reasons for it in CLL.
I was dx just over 2 years ago and whilst I'm not suffering the same levels of debilitating fatigue that others report, it's obvious to me that my energy levels are declining. In honesty the only solution I find is to rest but that's not so easy when you're in full time employment.
Take care of yourself and make sure all your vitamin levels are checked to eliminate other casual factors. It's so easy to blame CLL when sometimes there are other underlying causes impacting or overlaying on our condition. This extract from Terry Hamblin is very important;
'Another possible cause for fatigue in patients with CLL is a chronic infection caused by the immunodefficiency. This might be a low grade bacterial infection; perhaps of the sinuses, or perhaps even TB. It could be the reactivation of a virus infection like EBV or CMV.'
You may find this pinned post on our Employment Rights useful for the future (if you're UK based).
Really appreciate your replies - and the link definitely makes for interesting reading. Many many thanks - it makes SUCH a difference to know that I'm not alone, as much as anything else. I hadn't spotted the other threads mentioning tiredness.... This is such a worthwhile website!
Apart from general lassitude much of the day, I get profound fatigue that goes away in a about an hour - whether I nap or not. But there's also days when I feel great, and have to remember not to overdo exercise. I've noticed the profound fatigue comes about 2 days after significant stress or exercise. Interestingly, that corresponds to my slow digestion time. Eating does seem to boost my energy (and my waistline!) I walk 3-4,000 steps a day and do the elliptical for 10 minutes or so a day.
Fatigue was the symptom that started my medical quest 7 years ago. Of course, fatigue is a symptom of life itself, and a side effect of some drugs. I experienced major life stress with hurricane Katrina, and working in a hospital IT department. I now know many specialists, including a psychiatrist, urologist (testosterone), allergist, otolaryngologist, gastroenterologist (IBS-C, gastroparesis, dysbiosis), cardiologist, sleep specialist, in addition to the hematologist.
I am early stage, no significant lymph node swelling, trisomy 12, mutated heavy chain, annoying minor infections of mucosal tissues (sinus, eyes, gut, ear), diagnosed almost 4 years ago. My IgA's are below normal. IgG and IgM at bottom end of normal.
I now have an heirloom copy of my quest - all my test results, including CT and MRI scans in a large binder with doctor names. Overall, I feel quite fortunate so far.
I found this abstract on PubMed - it covers patients about to undergo therapy, and notes that women experience fatigue more profoundly than men:
I also work full-time and my weeks are very full. I'm 45, a school teacher, and was dx in May this year. For me, the most challenging aspects of this whole thing are the tiredness and the realisation that I am not 'bulletproof'. Saturdays are fast becoming my 'shut-down' days. I am forcing myself to enjoy sleep-ins, quiet beach walks, afternoon naps and catching up on favourite television series and good movies. By Sunday afternoon, I'm ready for another week of work. I get quite sad too at times - especially on Saturdays, when the rest of the world seems to be having fun and I'm too exhausted to cope with anything much - especially visitors. Anyway, I am very, very lucky that this is a chronic illness. So if CLL means toning down my Saturdays and having earlier nights during the week, then that's not much of a problem at all - just a bit of a life change. I'm learning that it's easier to just 'go with it', but on my terms as much as possible.
Like you, I thank my lucky stars that this illness is merely chronic, not acute. But I think I may be slightly further along the path than you. I already tone my Saturdays AND Sundays right down, and even then I'm in bed by 8 or 9pm every single night cos I'm utterly shattered. I do go to the gym 3 or 4 times a week, but modify my workout according to how knackered I am.
Believe me, I'm no wimp and don't want to sound like I'm whinging. Far from it. In fact my reason for posting was to find out if there are any strategies other people employ to cope.
David, I too experience extreme fatigue and have noticed from the lists that one of the most difficult aspects of CLL is how individual the symptoms are which creates difficulty with the medical community and the employment/disability insurance field. I am 60 with a WBC of 30, RBC of 144 and Lymph count of 24, platelet count is off course all over the place but last was 192. I was a very physical guy, exercising every day, biking, snowshoeing, kayaking cutting my own firewood etc, but it steadily headed downwards and in December my WBC doubled and I have yet to adapt to it. So I feel for you. Old ladies with walkers now zoom by me in WalMart. But I do have "moments" of energy every now and then when I get yard projects done and a few other things, but these times are rare and I usually pay for them later. My attitude is that regardless of what the docs say, this is what it is and I just live with it (I pick my battles and cancer isn't one of them). I retired early as my priority for energy use is to travel every 2 months to enjoy the beach while I can...the sun seems to do me well. Hang in there man and "non illigetimi carborundum"
Not a wimp or whinger in sight Sounds like you have a superb attitude to it all and doing your absolute best.
Apparently, I've had CLL/SLL for a couple of years, but wasn't dx until lymph node probs - widespread involvement unfortunately - so there are some other bits and pieces other than tiredness for me.
Not sure about you, but I've noticed that my lymph nodes go out in sympathy with tiredness, taking their turn in reminding me that the leukaemia is ever-present. Other than trying to be optimistic and rest (even though it makes me sad) there's not much else I can offer to your original post.
Best of luck, and hope others can provide better strategies for you
I should perhaps attribute my lack of fatigue, in spite of having had bulky lymphadenopathy, ALC @ over 300k and a marrow infiltrated @ 91%, to luck but I am a believer in exercise, reducing sugar and fat in my diet and keeping my Vit. D3 serum level above 60.
Three months before initiating treatment I lost usual stamina for climbing stairs and prolonged physical exertion because of anemia from dysfunctional marrow. With the tumor burden I carried it would have been logical to expect a greater fatigue factor but I never experienced it. The cytokine release should have been substantial in my case so why I escaped fatigue is unclear.
You might try a combination of dietary and exercise changes along with a Hydroxy 25 Vit. D test and hope for the best.
Oh yeah.. I practice Tai-Chi twice daily every day. If I had to give up any of the above my Tai-Chi would be the last to go.
Chronic fatigue is a well recognized complication of CLL related to chronic low level inflammation. Medications used to treat ADD (ritalin and others) or sleep disorders (Modifinil and others) may help as may a combo of NSAI and statins.
You know, the fatigue HAS affected me but I suspect since I work from Home, mine has not been as bad as yours....I can DO something, then go lie down...have a snack, drink some tea and go back to work....It's pretty much been this way thru out my ,now, 5year W&W experience. BUT, this Monday I begin my Chemotherapy (for the first time) and I've got a feeling the fatigue will be more prominent then....I had a little Valium before they put 'the Port' in on Thursday and I slept for 12 straight hours! (Must have needed it)..so, if you feel tired - then REST whenever you can....go to bed earlier & HYDRATE hydrate, hydrate!!!!!!!!!
Good to see that you've been given lots of fatigue busting tips to explore to find what works for you.
I can second Wayne's advice. It may seem counter intuitive and at times impossible due to the fatigue and overwhelming need to find a horizontal surface to collapse onto, but I did find exercise helped me once I stopped overdoing it. You'll probably need to be patient; it took me a long, long time to rebuild my stamina to a reasonable level, but prior to that I'd been constantly either ill or fighting off infections due to the immunity suppression from my SLL. I was pretty fit prior to my immune system failing, cycling over 100km weekly. My turning point came when I found that my vitamin D levels were below the normal range and bringing that into the normal range with a D3 supplement got me over the hump, where any exercise I did was sufficient to improve my fitness, rather that wiping me out for the next few days.
I found walking best, but other gentle exercise routines like cycling, swimming (immunity levels permitting) or Tai-Chi might work better for you. I went from walking to the nearest parks and resting on the park bench seats (and wishing that more local parks had them) to being able to go for increasingly longer walks with less need of a rest.
I’ve just re-read my previous post. It’s awfully ‘mamsy pamsy’, ‘sunshine, rainbow and lollipops’, and that is not what someone in your position deserves. So…even though I don’t have strategies to deal with fatigue, I hope that offering a genuine, heartfelt response offers something else. So here goes….
Today I want to yell, scream, swear and tell the world where to go. I want to cry. I want to weep for the stolen future I had worked so hard for….. And not feel guilty, selfish or weak in doing so.
Basically, CLL SUCKS!!!
As I am ‘younger’, I’m in a high risk category of it morphing into something far more sinister and I know that at some point, there’s a very real possibility that I’ll be facing a prognosis that’s expressed in months, rather than years.
I am scared. I am anxious. I am angry as hell.
And there’s ab-so-lute-ly NOTHING I can do about it.
Today, I feel as though CLL has assumed the driver’s seat and I’m its captive passenger. But I know that tomorrow, I’ll feel differently.
Tomorrow, I’ll be in charge, going about my work with purpose, dedication and determination, because that’s what excites me and makes me feel worthwhile. And CLL has no place there.
But on days like today, I drop in to read people’s posts, like yours David and others here, and it puts me right back in my place and gives me perspective.
So, I say to all ‘seasoned CLLers’…THANK YOU.
Bless you and your posts about going to the gym, sharing updates on new treatments and mostly, for being brave. Whatever you are doing in your personal lives I’m sure is worthwhile and productive, however please know that your contributions, especially to ‘youngsters’ like me, are pure gold.
Although none of us will likely never meet in person, your legacies reign supreme on this website.
Keep posting and being those lighthouses in these rough, uncertain seas.
Because to 'youngsters' like me, it means the world. xxx
Matilda... Thank you for sharing so honestly... Yes, CLL SUCKS... And sometimes it's good to say it loud - scream it out. Then later, as you say, we find coping strategies, get on with life, do other stuff and tell CLL it has no place there.
By the way, I didn't think your previous post was "mamsy pamsy’, ‘sunshine, rainbow and lollipops" at all.
Just realised your post was addressed to David, so apologies for butting in, but I was touched by what you said...
Nice post Matilda, genuinely expressed. And yes CLL sucks and sometimes it assumes the driving seat.
I don't have any revelatory words of wisdom about coping with fatigue I'm afraid apart from conk when you're zonked or exercise if you're able. Sometimes the 'passenger seat' is the only wise place to be with CLL.
I had one of the worst days ever since dx yesterday and realised I was angry with myself and refused to accept the limitations. I had an internal rant! That simply expended more emotional energy that I just didn't have to spare. So I went to sleep...
I too feel deeply indebted to the survivors and CLL warriors and their resilience and sheer bloody mindedness spurs me on. And in my mid 50's, I'm also out of the statistical norm.
Matilda, what lovely words!!! I can't express how much that lifted my spirits - thank you so much.
Think you're being a bit harsh on yourself, though. Your original post was actually realistic and helpful. There were no lollipops or rainbows in sight!
I'm "only" five years older than you, so I ain't ready for my zimmer frame yet, I can tell you. But what you wrote about these legacies and the uncertain seas is genuinely beautiful, and I will treasure those words in my heart forever.
And a massive THANKS to the rest of you that have chimed in too. There are some really useful tips and techniques here. Particularly heartening is knowing I'm not actually alone in this, that I haven't imagined this awful tiredness. Next time I see the consultant I'm gonna beat him up about some meds for the fatigue. And I'll carry on going to the gym, cycling, walking - and being that lighthouse Matilda mentions!
I'd like to add a note about allergies to pollen and such. When I'm feeling energetic, I then to want to clean, or go outside and work in the yard and enjoy the sunshine. But such activities expose me to dust and pollen. I take fexofenadine (Allegra) every day as it is, but it is certainly not enough.
I've notice that on high allergy days, my fatigue is much, much worse. I experience much more post herpetic neuralgia from the Zoster infection as well. Having B-cells out of whack, but still producing IgE, which is key to the allergic reaction, perhaps there's other signalling that results in additional fatigue. All that allergic inflammation consumes resources. I haven't seen papers on the subject.
So recently, I bought an inexpensive respirator ($15 USD 3M 6000 Series Half Facepiece Respirator) - the kind with pink filters that can catch pollen - and cheap goggles ($14 USD Uvex S3970DF Stealth OTG Safety Goggles) I can wear over my glasses. I see even professional greens keepers wearing such devices now. This has made a significant difference on my allergy, and some difference on fatigue. I've even worn the goggles to work for the walk from the house to the car and car to office on high pollen days in the spring. Who needs both itch and fatigue?
The other aspect of fatigue I've noticed is that if I use muscles to the point of pain, I think that indicates muscle damage. In healthy people, the repair happens quickly - within a day or so. Damaged cells are digested by macrophages, new cells are built, metabolism shifts, and one gets stronger. In CLL, depending on the exact mutations and stage, of course, this may be slower, because of signalling and fewer resources. No cell is an island in the immune system. As CLL progresses, the immune cells that "take out the trash" will number less and less. The trash will build up, and inflammation will be worse. In addition, some types of cells are made on demand.
Below is a reference to metabolic changes in different immune situations. Someday, I hope to know this sort of thing well, as I do not find that some of my doctors know it very well. But for now, I read it and research the terms:
Some of this could explain why a quick snack revives some people from fatigue, but not others - It may depend on what the body is fighting at the moment, and whether the affected tissue simply needs more quick glucose, or something more complex.
Finally, with both exercise and allergies, staying hydrated is important. Dehydration itself results in fatigue.
Hi David - I'm in the same boat as you and I am not even in "watch and wait" so they say. I have MBL but it could turn into CLL. I'm not only tired, but even more so quite nauseous most days for at least part of the day if not all at times. This is even with WBC 12 and ALC 6.2
I'm also told it's not because of my diagnosis but I know differently because there is no tiredness or ill feeling like it.... I hope you get feeling better. Oh, and I have tried many things like ginger etc and nothing seems to help unfortunately.... at least for me
On CLL Topics site, Chaya suggested taking Vit D3 in oil supplement (it's absorbed better in oil) and I found this really helped with the terrible CLL tiredness.
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Sounds like you have a superb attitude to it all and doing your absolute best.
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