Fatigue is common symptom with CLL tha... - CLL America Support

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Fatigue is common symptom with CLL that is poorly recognized by doctors. Please share your experiences via this poll plus comments.

tclementi profile imagetclementi23 Voters
11
I experience fatigue daily
4
CLL-related fatigue is not a problem for me
4
Fatigue is sometimes a problem, a few times a month
4
My fatigue is the worst in the afternoon
4
My fatigue is the worst in the evening
3
I experience fatigue several times a week
2
My fatigue is the worst in the morning
0
My fatigue is so bad, I barely have enough energy to do this poll!
31 Replies
rsw147 profile image
rsw147

I don't know if the fatigue is from anxiety, the condition or both.

pdmw profile image
pdmw in reply torsw147

I went on an anti-depressant after I was diagnosed because I needed sleep. It's been 3 years and it has helped with my sleep tremendously, which in turn alleviated my anxiety. Anxiety gets far worse without adequate sleep.

in reply topdmw

Wondering what anti-despressant you're on even though everyone's different but would be nice to know. Are their side effects from it? Glad it helps you sleep.

pdmw profile image
pdmw in reply to

Trazodone. I take a low dose. No side effects to speak of.

in reply topdmw

Thank you!

Shortcake2 profile image
Shortcake2 in reply to

I had to end up taking 2 Benadryl every night to help me sleep. I'm allergic to Ambien.

tclementi profile image
tclementi in reply topdmw

Definitely agree with this! There's no shame in anti-depressants (i know this from experience) and they really can help! 

pdmw profile image
pdmw in reply totclementi

Just and fyi, by using the word "SHAME" you are implying that I or another person on this list might have "shame." You might want to think long and hard before using the word "shame" with regard to health care. I realize you're trying to be supportive but that comment made you seem somewhat ill prepared to actually be part of the conversation. 

tclementi profile image
tclementi in reply topdmw

I absolutely meant no harm or to imply anything. I now understand your perspective. All I meant was share my perspective of how shame regarding depression medication affected me in hopes that it could encourage someone else who might be feeling that way. I know when I was diagnosed, I felt uneasy about taking medication and like others would view me differently. Others have also used that word when describing how they have felt to me so i wanted to add that into the conversation.

mgh348 profile image
mgh348

Frequent fatigue and also sometimes flu like symptoms due to cytokines.  

tclementi profile image
tclementi in reply tomgh348

Have you found any relief/coping skills that work for you? 

pdmw profile image
pdmw

I've mentioned my fatigue to my Dr. and he acknowledges it but that's as far as it has gone. 

tclementi profile image
tclementi in reply topdmw

Hi pdmw- I'm sorry your doctor isn't offering suggestions for fatigue. Perhaps you can look to a different doctor for advice if fatigue is becoming a problem for you?

pdmw profile image
pdmw in reply totclementi

Well my Dr. is one of the leading CLL physicians in the world. My guess is I need to be more emphatic about my symptoms.

tclementi profile image
tclementi in reply topdmw

That sounds like a good idea! 

Fatigue has been the continual debilitating symptom my husband has had since before he was finally diagnosed last year. Seems there's no help for this. It's hard to not feel depressed when you are continually tired even when frequent naps don't help restore energy. 

Dona

tclementi profile image
tclementi in reply to

Hi Dona, I definitely understand that this is hard. Have you and your husband talked to his doctor about any treatments/medications/lifestyle changes that could help? -Theresa

pdmw profile image
pdmw in reply to

There are medications to help with fatigue as well as other symptoms.

mgh348 profile image
mgh348 in reply topdmw

What specifically? 

pdmw profile image
pdmw in reply tomgh348

You would need to discuss this with your oncologist. In the past week or so there was a very good article posted on Patient Power. 

mgh348 profile image
mgh348 in reply topdmw

Yes, I saw that.  Thanks.

Shortcake2 profile image
Shortcake2 in reply topdmw

What meds are recommended for fatigue? I am exhausted all the time. I still force myself to function, but it's a challenge. My husbands keeps repeating, pace yourself.

tclementi profile image
tclementi in reply toShortcake2

Hi Shortcake2 - There is currently research being done on JAK2 inhibitors! I'm sorry you're having a hard time and it sounds like your husband is trying to encourage you!

Shortcake2 profile image
Shortcake2 in reply totclementi

I'll ask my oncologist tomorrow about it. Thank You

Shortcake2 profile image
Shortcake2 in reply totclementi

I had an Oncologist appy today, so I asked him abut the fatiqur. I asked him about B12 shots or vitamins and he said there is nothing that will help the fatigue. He did say it appeared my lymphoma is worsening even though the white count is lower than it was in May. Scheduled for another Bone marrow test and CT Scans. He also suggested I might need to go with the P17. The side effects of the P17 seem to be endless.

Shortcake2 profile image
Shortcake2

I talked with my oncogisy about fatigue and he recommended starting chemo. That seems too harsh for fatigue. Any thoughts?

tclementi profile image
tclementi in reply toShortcake2

Hi shortcake2- It's great that you talked to your oncologist about it. I've heard of some patients doing chemo for fatigue but if you're not comfortable with that, tell him and maybe he can offer some alternatives.

brian_in_Seattle profile image
brian_in_Seattle

There seems to be one kind of fatigue related to undergoing chemo and another that's part of the disease itself. Hard to separate them.

tclementi profile image
tclementi in reply tobrian_in_Seattle

Thats a very good point Brian!

brian_in_Seattle profile image
brian_in_Seattle

Thanks! On another related note: I wonder if there has been any study regarding to what degree patients, after therapy, regain full pre-symptom quality of life? At 60, I am an ardent, life-long hiker, bike commuter, runner, skier, and I wonder whether those in remission regain their full range of activity? My doctor has been cautiously optimistic. Right now I can't walk my dog without wanting to take a rest and it was even worse before I started treatment (I am in my 2nd round of chemo).

tclementi profile image
tclementi in reply tobrian_in_Seattle

Good question and I believe there are some studies about that. I can do some additional research. You might want to check out the Patient Power blog- one CLL patient has blogged for us named CJ Chris, he is an active biker and that might encourage you! My advice is to be patient with yourself right now, your body is going through a lot with chemo and fighting the CLL and is resilient and can bounce back over time!

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