CLL Support Association
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Tired

Hi.. I’m cll stage 0 (discovered during blood work for knee replacement surgery). My red cell counts are normal, but I still feel fatigue often. I’m 4 months out of knee surgery, and am now working 48-56 hours a week, plus training horses on the side. On my day off, I’m sooo tired I can’t hardly function, but a couple of years ago, I could chug right along. I take multivitamins daily, so would taking iron help with my fatigue. I used to be an extremely high energy person, but I now feel like Pacman after the ghosts have gotten him!

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Hi Kimhice,

Being and feeling tired seems to be the biggest battle cry of CLL’ers and still many of the medical community struggle to understand and accept it. You’ll see from the ‘related posts’ on the right that it’s a hotly debated subject and you’re certainly not alone in feeling unusual levels of tiredness even at low CLL staging.

You don’t say your age but you are working long hours and have a physically demanding sideline not long after knee surgery. I’m exhausted thinking about it!

I’d just urge caution about self prescribing multi-vitamins and iron supplements. Have them medically checked out and calculated, especially Vit D and B to ensure effective supplementation levels should you need them.

I’ve done quite well with my energy levels thus far and I’m five and a half years diagnosed, (as yet untreated), but lately I could do napping as an Olympic sport!

Take it easy on yourself, our bodies are under siege at times trying to keep the bugs at bay. I’m sure if the piping system on my car was as clogged as my bone marrow, it wouldn’t run so effectively!

Best wishes,

Newdawn

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Thank you! I turned 51 on November 8, and am on the “watch and wait” program! I’m usually a very emotionally strong person, but after my diagnosis, I blubbered like a baby on my primary care physician’s shoulder ( thank the gods for waterproof mascara)! There’s always that little niggling worry in the back of my mind, and every little limp sends me into a worry wart fit. But at my last oncologist visit,my white cell counts had gone down. I had an ultra sound done on my internal organs, and they all came back clear and normal. I’m not a patient person.. but guess I’ll have to learn patience!

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I'm in my first year of this, and still finding depths of anxiety lurking -- point is, it is said that typically people take a year or two coming to terms with this diagnosis.

Mine is the SLL version - the tumor cells lurk in lymph nodes giving one some degree of hamster appearance around the jaw, with many unfamiliar nodes swollen too.. Yet it is a far better diagnosis than an acute leukemia, so that perspective helps.

Of the new fatigue, which might be caused by confused cytokine signals via our tumor/duff b-cells, I sometimes think a ginseng tea helps, though this might be entirely psychosomatic! But you sure are busy..

How is your knee? Keyhole 'minor' surgery, I trust? The advice of the specialists is generally to keep such joints moving - advice from an artificial knee-joint inventor to me, with my happy knees, was never to kneel!

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My knee surgery was a total knee replacement with a mcl repair. So I basically have a “bionic” knee, with a scar that’s about 8 inches long. I had to do physical therapy for 3 months, and still do therapy 3 days a week at home.

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Kimhice, sounds like you are working away too hard. What are you doing for yourself in the way of relaxing , exercise and good diet? It’s always good to get other professional opinions for any supplements. Not only will a good naturopathic doctor or a general practitioner that practices preventative medicine be able to find out what your body needs but they will be able to recommend good sources of natural products as not all vitamins are good.Take care of yourself!!

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I relax by grooming my horses and reading military fiction, and as for exercise, I walk at least 5 miles a day at my job, along with stacking 35lb boxes, plus cleaning stalls and unloading 50lb bags of feed. My doctor has approved my vitamin regime.

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Wow! That's the full surgery.. You have had a tricky year and no mistake, even if you are now bionic ;)

A friend had knee surgery 2+ years ago and is only this year feeling confidence return; the rehab process to regain stabilizing muscle strength and tone took longer than she imagined -- I'd make sure to find the time for full rehab exercises.

Who looked after the horses during your 3 month rehab time?

I found hypnotherapy eased some of my internal emotional 'noise' - soothed me - and I'd guess some mindfulness techniques in context of your horse care might be similarly helpful in quieting inner dialogue (anxiety about health) in favor of 'being in the present' or whatever the goal should be.

For sure, several aspects of horse care sound relaxing.. But you must be super fit and strong. Hope your CLL is indolent and will give you no trouble for a long time - handling the variable fatigue is challenging, and your life seems to have little space for extra rest. I wish you the best with figuring how to handle that.

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