Fatigue

[dandelup]

I have been in remission from CLL for over a year now, but one symptom that has never changed in fact it’s getting worse is fatigue, I sleep well but most days I wake up feeling exhausted my limbs are aching and feel heavy. I was wondering if anyone else has had these symptoms, I have had recent bloods taken and they show the CLL has not returned.

[Walkingtall62]

Hi, I am nine months into Acalabrutinib and on the odd occasion I get exactly those symptoms. Then it goes, then it comes back. Sometimes I have been active, sometimes not. Sometimes it is nice weather, sometimes not. Sometimes I am cold, sometimes not. Not yet figured it out either. Take care

[Jm954 Administrator]

This is a slightly off topic suggestion but is there the possibility that you could have sleep apnoea which causes terrible tiredness? You can do on on line assessment called the Epworth Sleepiness Scale which gives an idea of the likelihood of apnoea.

If you do have sleep apnoea it's important to get treatment as it can cause heart problems and, of course, the possibility of falling asleep whilst driving.

Here it is: blf.org.uk/support-for-you/...

Jackie

[MovingForward4423]

My fatigued has pretty much gone after treatment with Ibrutinib. However, from time to time, I do get intense tiredness. Rather than resting and allowing myself to be overcome by the tiredness and fatigue, I do the opposite and force myself to exercise. I find the exercise overcomes the fatigued/tiredness and put me back in a good place. I used to do this before treatment, I had a lot of fatigue but I decided to counter with exercise. It really does work, even if its just a brisk walk.

[Catnap7 in reply to MovingForward4423]

Everybody is different BUT this is exactly how I control my fatigue so it doesn’t control me.

[Phil4-13]

dandelup, I’ve heard this before, that exercise will reverse your tired feeling. I routinely take a walk or find a change of scenery sitting out in the sun and fresh air. Sandra😊

[cllady01 Former Volunteer]

Dandelup, one more suggestion related to possibility for fatigue: Have you had a test or thyroid levels? The test is one you may have to ask for, not one routinely given.

The suggestion for some daily mild exercising (walking is my preference) has proven to help me with fatigue, though when fatigued, it takes effort to get up and get out. It is worth it, not that the fatigues disappears, but it does lessen and give some time with energy.

I have not had treatment, but others have reported who take Ibrutinib a lessening of the fatigue over time, we all have different metabolism speeds as well as different experiences with medications. I do hope you get some relief soon.

[dandelup]

Thank you for all your replies most helpful

[SofiaDeo]

Have you checked Vit D levels? When mine were really low, I had extra fatigue. And a free T3/T4 level will show if your thyroid is actually putting out too little hormone even if TSH is normal, I have that problem. I am assuming all your iron parameters have been checked & you don't have any type of anemia.

[rvles]

Are your hemoglobin levels in the normal range? Low hemoglobin is a cause of fatigue. FCR reduced mine considerably, it took some months before they came back close to normal.

[MovingForward4423 in reply to rvles]

If they are on an Inhibitor they will be having regular blood tests, and HB is monitored. Fatigue, unfortunately, is a side effect of CLL and the treatments. Exercise is the best was to counter it.

[country76]

I am taking Alacabrutnib 10 months now and just recently have been experiencing both and also with a headache.

[dandelup]

I am going to start playing golf again this week will see how that affects my energy levels.

[MovingForward4423]

Physical exercise really helps to counter fatigue. I know it is hard when you are feeling wiped out, but try to get out, even if it's a brisk walk. I cycle loads, 3x a week in the morning. Set's me up for the day.