I was diagnosed two years ago, after assorted docs made assorted differing diagnoses. It was an enlarged spleen that finally led to the correct diagnosis, despite my GP convincing himself that the pain was, in fact, my kidneys.
Anyway, I consider myself lucky, as I am still able to work and carry on reasonably normally. But I'd really like to know how others cope with the nausea and tiredness. Some days it's almost unbearable, and it seems to have a rhythm, a pattern all its own. Every six weeks or so I'll get physically drained and absolutely everything's a struggle. I'd love to hear from anyone else that suffers, as well as any coping strategies.
Thanks!
David
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Welcome to our community David. While it is good that you are able to consider yourself lucky, hopefully you'll find tips here to help you with those frustrating symptoms and further improve your life. You are far from alone in facing the frustration of variable and unpredictable fatigue, so you'll find lots of posts and questions where this has been discussed. There are two pinned posts that you can find on the right: "Fatigue and how to overcome it" and "CLL and Fatigue" for starters. Also the results of our poll and associated comments "Fatigue is common symptom with CLL that is poorly recognised by doctors" should be of interest.
Common themes in dealing with fatigue on this site that come to mind are to:
* gradually improve your fitness as you are able (don't overdo it or you'll face drained day(s) afterwards)
* get your Vitamin D level checked (simple blood test) and if required, use a D3 supplement to get it into the normal range
* ditto for your vitamin B12 level - particularly if are taking proton pump inhibitors to control gastric reflux
I'd be interested if you could provide more detail on when you experience nausea and why you believe it is CLL related - it may not be. I can feel nauseous if I get a day sweat and rarely with a night sweat and it isn't pleasant, particularly when it catches you unawares at an inconvenient time (like today when I was working on the top of the house roof and just had to lie down until I felt well enough to get down). Nausea doesn't seem to be a problem generally for those with CLL other than during treatment (but I'd like to hear from others that say this isn't so). I presume you are still on Watch and Wait?
Neil
PS I've edited your title to hopefully gain more responses addressing your questions
Thanks, AussieNeil, for such a kind and welcoming reply!
According to my consultant, the nausea may well be caused by my spleen - which is still quite badly swollen and pushing where it probably shouldn't (and you can kinda tell my anatomical knowledge isn't that great! ).
There's some useful stuff here. Very useful. I've checked the pinned posts. The Vitamin info is really good to know, too. I just wish the docs over here were more informative. Regarding fitness, I tend to have a gym sesh every other day, and firmly believe that it helps.
I'd almost asked if the nausea was thought to be caused by your spleen. Normally that's well protected by being tucked just under your left rib cage, but if it enlarges (a common occurrence as SLL/CLL progresses), a doctor or haematologist will be able to 'tip' it by feeling for its edge below the rib cage. Spleen size examination should be part of your regular examinations to see to what degree your SLL/CLL is progressing.
I too have a swollen spleen, but for most people it generally isn't noticeable other than when it makes you feel full by pressing on your stomach - which can also lead to weight loss which may trigger treatment if it is fairly rapid and unexpected.
No nausea problems for me, but fatigue can range from not a problem to ' no life force ' when I have no energy at all.
I take a D3 supplement ... but like Neil there are times that I get an ' order ' without warning, to lie down ' now ' though thankfully as yet, not while perched up on top of a roof .... ( He was probably armed with a camera trying to get that shot of the lesser spotted three toed Laughing Kookaburra bird )
I wish! While I've heard kookaburras around here, they've never been close enough for me to count their toes, let alone their spots! The closest I've come to seeing them is when when I returned from a sunset walk to hear them in the trees around the house. I was able to find the tree from which they were laughing only to see a silhouette of one flying away, so they've had the last laugh on me.
Yes, agree the 'fatigue' can vary hugely. Sometimes I look up at the stairs and it feels like climbing Everest, the next day I can do my daily run no problem. I think we should rename 'fatigue' to something more heavy duty - any suggestions? When you tell people you are 'tired' they say yes, so am I but CLL tiredness is in a whole different league. It's rather like comparing clinical depression with feeling a bit down. The CLL 'tiredness' cannot be argued with, it just fells you and it's the boss!
Hello and welcome to this helpful and supportive forum. Re fatigue, if you are someone who pushes himself to the limit you can't change your personality, as I know from my own experience. Keeping going without pacing yourself can come at a cost, as when you reach the state of complete exhaustion.
I have learned not to overload myself most of the time, and likewise keep my diary under control - especially the numbers of meetings and evenings that I am out in one week. As I am now semiretired it is only my own inner drive that makes this hard.
You don't say whether you are working and if so whether this is full time - which obviously makes it harder to control your day. Having an adequate lunch break is helpful, and/or a "power nap" for 20 - 30 mins in the afternoon, if you are in an environment where this is possible ( I use the car if necessary).
If you reach terminal exhaustion point, I would just give into it. Allowing yourself a "duvet day", which is not a luxury but sometimes a necessity, is something I do when I get to this state. You may then find, like me, that you are still able to have a good night's sleep afterwards. Then two or three quiet days with some gentle walks usually restore me.
Re nausea I tend to get this with day flushes/sweats and also if I have any infection or am very fatigued. I have been prescribed domperidone for this which I find very helpful. While it is also available over the counter, I would strongly advise you to see your doctor about this in the first instance; nausea has a number of medical causes which need to be considered.
This a wonderful group of people, so glad you found this site!
I'm having tiredness and fatigue more often it seems and I also get bouts of nausea. I do get a full blown tummy infection every now and again, with day seats, then I take antibiotics. But the really bad days are both fatigue and nausea. I take Pepto Bismo, the pink stuff, when I'm nauseated and sometimes if I can tolerate fluids, I drink Ginger Ale, 7 UP, organic ginger tea, and lots of water. On some days, I get the "zoomies" where I feel almost normal, do as much as I can, since tomorrow is another day, then the crash.....it's pathetic. My older cats get the "kitten" in them again, the dogs get the "race' around, horses do the " scoot and toot", hens do the "jumpn' flutters", and I get the zoomies. I don't know what Kookaburras get, maybe Neil can shed some light on those critters. I think the tiredness, fatigue and nausea is the worst part for me, it impacts my life heavily with all the ranch chores I have. I was at "watch and wait" till I met with my new heme/onc at UCSD Med Center. I see him again at the end of May. I think I'll be starting the Chlorambucil and Obinutuzimab, since It's ending it's clinical trials. I am excited to feel better and hopefully resume a more normal life. My best for you, and everyone.
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