tiredness

[welshlady52]

Hi does anyone have trouble with fatigue? I seem to need to have a lie down every day recently and sleep for an hour. Its worrying me a lot because it makes me wonder whether my CLL is getting worse or am i being paranoid???

[Newdawn Administrator]

Hi Welshlady,

How are your platelets doing now because in your post a year ago, you were concerned that they were low and anaemia could be implicated. That could explain increased tiredness. Worth exploring with your doctor if you're concerned but fatigue seems to be a general feature of CLL and not necessarily dependent on high counts.

Best Wishes,

Newdawn

[welshlady52 in reply to Newdawn]

Thanks for replying Newdawn. When i seen my consultant last they had come up a bit so he is keeping an eye on them. I am seeing him again next month. I take iron tablets,one a day,because i have always had problems with anaemia,long before i was diagnosed. Yes i have read about fatigue on here....will see what he says in july. Most probably its me being paranoid again.....i always worry things are getting worse.....

[PaulaS Volunteer]

Hi Welshlady,

As Newdawn has said, fatigue is a very common problem with CLL.

I'm sure you're not being paranoid... You're just understandably concerned about a change in your condition. When you see your consultant in July, then I presume you'll have blood tests done again, and will get a better picture of what's going on. You say you've had a problem with anaemia for a long time. If that has got worse, then it could be causing the extra tiredness. Or it might be something completely different.

Sometimes specific reasons are found for CLL fatigue (eg anaemia, low Vit D, low Vit B12, lowgrade infections, chronic inflammatory conditions, depression, thyroid problems etc). It's worth checking on those things. But often nothing is found that explains the degree of fatigue we're getting. Yet that doesn't mean it's not real. Maybe in future they will discover more reasons for CLL fatigue that WILL show up in tests.

It was increasing fatigue, specially in afternoons, that first made me go to the doctors back in 2006. They saw I had a high white blood cell count (though my haemoglobin and platelets were fine, and CLL wasn't actually diagnosed till a year or so later). Anyway, ever since those early days, I have needed to lie down every afternoon, and sleep for at least an hour. If I do that, I am OK to do stuff again in the evenings. If I push myself to keep going through the afternoon, I'm absolutely zonked and non-functional in the evenings - and often don't feel good the next day either.

As my CLL has slowly "progressed", my need for an afternoon sleep is still the same. I don't need to sleep any longer than before, to recharge my batteries to keep me going for the evening. So for me, the need for an afternoon sleep hasn't been a sign of disease progression.

It may not be the same for you as it's been for me of course, but I thought I'd share my fatigue experiences with you.

Best wishes,

Paula

P. S. Here are two useful posts from the past, about fatigue..

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

[welshlady52]

Thank you for replying PaulaS,,,,,,,means such a lot to me....

[jangreen]

Hi as well as echoing the last two posts I would add that even though fatigue is such a feature of Cll no scientific research has ever been done to find out why. Yes we all want a cure but some help with side effects especially fatigue would be much appreciated. Best wishes

[welshlady52 in reply to jangreen]

Thank you for replying...

[Elliot43]

Hi Welshlady,

I don't get fatigued all of the time.I get it occasionally. usually when I've overdone it!!! this can be physically i.e. walking round Ikea for 2hours… definitely. Another time i might end up exhausted from talking a lot or interacting with a lot of people in a group. a sort of mental fatigue by which i mean not just ordinary tiredness , for me its like a blanket of fog coming down. But i can do these things another time and I'm fine!!! I've had chemo in 2013 and my bloods are stable. check ups every 4mths.

I know that most CLLers here seem to complain of fatigue in some form.

Rest up well to renew yourself. Talk to your doc …see what your bloods say

warm wishes

Sheila from Oz

[welshlady52 in reply to Elliot43]

Thank you so much for replying....

[DocM]

Hi Welshlady. Fatigue was my number one symptom and the original cancer centre I went to could not explain how I could be so tired given my numbers. As my WBC went up, I got more tired...when they went down I got even worse. My RBC always stayed excellent. One test showed a low B12 so my doc recommended I started taking B12 sublingual. Despite going on energy drinks and B12 it kept getting to the point where I could barely walk. Three months into taking the B12 wafers, I started taking 500mg magnesium as a recent study indicated positive effects on pretty much all the symptoms I was experiencing (Dr. Geroge Lundberg, At Large at Medscape), so I started taking 500 mg of that as well. Within a week, it was like a switch was turned back on and I now feel like my old self again...the energizer bunny! Now for a guy who was sleeping most of the day, I'm up, running 1.5km a day, followed by 90 situps, 30 pushups, then out to work in the yard. And I'm 62. Long story short, it took 4 years to get back here, but I'm so happy the fatigued got under control. I don't know if it was the B12 finally kicking in or the magnesium, or the sun of the summer, or the combination...but there is life after afternoon naps. Good luck

[helenvb]

Hi Welshlady,

My husband was the same pre and post treatment, he struggled from 3pm onwards and then slept every day when he got in from work sometimes for an hour, at other times 3 hours or straight through until morning. He had ITP pre treatment with very low platelets (5) and infection complications post treatment. Since starting ig infusions each month his energy is back and platelets the highest they have every been , taking them from the 100-130 range post treatment up to 180+ now. His fatigue was probably a combination of fighting infections all the time and the pre disposition to the platelet interference. Sometimes the fatigue returns for short spells as he has ironically become depressed since the body has healed a little, the mind had to catch up. But he's on the road back to metal wellness now.

The specialist nurse suggested exercise as a way through the fatigue post treatment, he tried this and ended up with his giant tonsils back up after two 15min gym sessions doing exercise he used to do pre illness. So much so we thought the CLL had reinvigorated. His psychologist who is linked to the oncology team has the theory to not do vigorous exercise but focus on very short walks, followed by rest and this seems to be a better approach.

I hope you find a way to help with your fatigue, maybe ask if there is someone you can talk it through with within the oncology/haematology team.

[welshlady52]

Thank you all for your replies....means a lot to me....

[Berrytog]

Hi

Moving sideways a little and noting that Churchill always a had his pm nap then worked late into the evening, low platelet count and fatigue can be related to a liver disorder called Wilson's Syndrome where excesses of copper are retained by the liver.

[Elliot43]

I find that a fair bit of moderate excercise is helpful. I do a yoga class once a week go to the gym for a moderate seniors workout once or twice a week. Walk quite a lot and cycle sometimes depends on the weather and winds!