I have been diagnosed with CLL for 20 months. What do people do for fatigue ?

[adguy]

What do people do for CLL fatigue ?

[stunned]

Fatigue can affect people in different ways and there is no one answer to your question.

Some find it beneficial to "work through" the fatigue, others are knocked for six and simply cannot do anything.

On the NHS website re CLL, it states that fatigue related to CLL is like no other fatigue and is not alleviated by rest or sleep.

Trial and error: do less when the fatigue hits and more when you feel more active.

If the fatigue hits at a regular time of the day, try to amend your daily schedule to allow yourself to rest at this time.

I can go a few weeks feeling okay then spend a whole weekend tucked up on the sofa under my duvet doing nothing.

I work full time and find that getting into a routine and hoping my body follows suit, has been a great help. I have the occasional day when i am not at my best, but all in all getting up at the same time each day, having my meals at the same time and going to bed at the same time each night helps with my fatigue.

Hope this helps but if not, Macmillan have a really good booklet that you can send for all about fatigue.

Anne

[Kwenda]

This may sound counter intuitive but many people find that some gentle exercise is good for fatigue.

It certainly works for me and others who write on this forum…

I suspect that what the exercise does is to increase our general fitness level, thus with exercise and a carefully planned diet we are just more healthy overall.

Of course exercise is also essential for neutrophil circulation and blood counts, so that helps anyway.

So I would suggest some small steps to exercise, taking it slow and steady to begin with.

This could be as simple as a walk, or later a trip to a gym or exercise pool.

Good luck with your choice of assistance as being fatigued can lower us mentally, which is never a good thing.

Dick

[Cllcanada Top Poster CURE Hero]

CLL fatigue is poorly understood, but it is thought to be a misguided immune response... so it is more being 'sick' than tired...

The late Dr. Terry Hamblin discussed a number of theories...

mutated-unmuated.blogspot.c...

I was forced on to long term disability in 2002 due to CLL fatigue. But I agree

with Dick, that mild to moderate exercise can help... it certainly did in my case....

the added benefit was weight loss, improved health, so that when treatment time

rolled around the side effects were minimal.

~chris

[gemit2000]

This is a timely post for me because I did not leave the house today feeling weak, tired, and a bit ill. I must say that I have been very grateful because in the 3 years since my illness had been diagnosed I have never once felt ill. I've felt instead only lucky and a bit guilty as I'd read how so many feel sick and tired of feeling so sick and tired.

But since I've never experienced "CLL fatigue", I'm now questioning whether what I'm feeling is related to CLL at all or perhaps just a bug of some sort. I think I am leaning toward 'bug' because besides the weakness and fatigue I also have congestion. On the other hand over these past few months I've seen a spike in my ALC along with my first CLL symptom - growth in nodes. At my last appointment I was told I am now Rai Stage I so getting one more symptom would seem consistent with that.

I originally thought the flu shot I got last Thursday (my first in a decade) was the culprit but now after a web search feel that was purely coincidental.

So does "CLL fatigue" feel like something that might just be a cold bug and visa versa? If it's a bug then maybe rest is best. If it's CLL maybe I should push a little and try to remain active, though perhaps a bit more gently than usual.

Thanks,

Gene

[fieldmeadow]

The fatigue I felt (pre-treatment) didn't feel like a bug but again we are all different).

I coped by doing gentle exercise or going for a short walk. Other times I was too tired to do anything. When that happened, I learned NOT to feel guilty about putting my feet up and having a daytime nap. But if you think you may have a bug then consider getting checked out by your GP. Our compromised immune systems mean we are more prone to both fatigue and infections. It's important that your GP knows this.

[DocM]

I have been diagnosed with CLL for 3 1/2 years and fatigue has basically taken over my normally very active life. When I cut the lawn, I get about 2 hours of a great euphoria, then pay for it the next day or 2. I personally enjoy sleeping during the day outside (all times of the day). Falling asleep in the middle of doing things is a recurrent probl.............zzzzzzzzzzzzzzzz

[lankisterguy Volunteer]

The regular readers here and on other CLL sites know that any mention of fatigue gets a post from me about testing for unusual childhood diseases, so here it is again.

"Don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue."

We have CLL a cancer of the immune system, it allows many diseases to affect us that don't bother most people, but our hard working, intelligent doctors often forget those potential complications. See Dr. Terry Hamblin’s blog on fatigue: mutated-unmuated.blogspot.c...

Both times my CLL progressed I got severe fatigue and a reactivation of a childhood disease that added to my symptoms. In 2010 before treatment we tested for Iron and D3 and found I was extremely low in both, so supplements helped relieve some of the symptoms. Others in our discussion groups have found Vitamin B 12 to help. Don't just add some random amount of these supplements, get your PCP or Hem/Onc to test you for Iron & Ferritin, Vitamin D3 ( Cholecalciferol, 25-hydroxyvitamin D ), Vitamin B 12 since the correct amount to supplement may be drastically different than non CLL people.

I also had Whooping Cough (Pertussis) and an antibiotic quickly cured the bacteria infection but the cough lasted a long time. When I was treated in 2010 with Rituxan monotherapy the fatigue problems decreased dramatically but the cough took months for the symptoms to slowly subside and the coughing disturbed my sleep some nights adding back some fatigue.

In 2012 I had leg cramps and fatigue that primarily occurred when I tried to drive a car, I could walk OK but not drive. A reactivation of HHV-6 was diagnosed along with progressing CLL. Treatment with Valganciclovir (Valcyte not Valtrex) in October relieved the cramps, reduced the fatigue and lowered my ALC, starting Idelalisib in December fixed me entirely.

So is it CLL and an opportunistic infection?

Suggest you get tested for all the HHV viruses like CMV, EBV, etc. i.e.: the entire list of HHV 1 to 8. HHV-4 is EBV also known as mononucleosis, notorious for fatigue. Note that the more common antivirals (Acyclovir and Valacyclovir) are not believed effective against all 8 HHVs, so you must be tested and treated differently if one is found active.

Most Docs ignore these since many adults have these as dormant, latent viruses controlled by the immune system- we immune-compromised patients see them reactivated. We know about Shingles from Chicken Pox (HHV-3) but the others are difficult to distinguish from CLL symptoms. So don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue.

And as others have suggested get your Immunoglobulins tested and if needed, get IVIG infusions; many CLLers have had their frequent bacterial infections stopped by that expensive but effective step.

Since you have a weakened immune system, you should be aware that fungal infections can happen. Learning about fungal infections can help you and your doctor recognize them early. This may help prevent serious complications.

Although much progress has been made in the management of opportunistic fungal infections, their diagnosis and treatment remain a challenge.

Len ( as Yogi Berra said: Deja vu all over again)

[SeymourB]

I totally agree with Len.

There's more than 1 cause of fatigue, and it could be some disease the immune system cannot adequately fight - especially in earlier stage. I have great red blood cell counts and platelets, so I'm not anemic. Yet, I get so tired, I could just sleep wherever I am. If I can stay awake for an hour, I come out of it ok. Sleeping helps, but doesn't make it go away completely. My hematologist has no advice, other than to say it seems too early for such fatigue. Yet, fatigue is what set me on this odyssey from doctor to doctor.

So do try to make sure you get good sleep when you sleep. If the worry keeps you up, avoid over the counter sleep meds, and look toward prescription ones. But watch out for prescription ones - they may leave you with a hungover feeling. Dosage is everything.

Get a sleep study done to make sure you don't have apnea. Watch out for restless leg syndrome. If they diagnose that, they may prescribe drugs that slow your nervous system, which can leave you more tired on waking. Dose is key.

Try not to fight the fatigue with caffeine - you can get in a vicious cycle. Have a cup of tea or coffee or 2 a day.

Try not to fight the fatigue with sugar or simple carb foods that tend to boost energy for a short time, and then let it crash within hours.

Do get vitamin D, B12, folate, iron, and thyroid stimulating hormone tests.

And if all this checks out, and you're still tired, then get some extra sleep, and keep watching for new info. Fatigue is a huge problem, not just with CLL, and it's not that well understood. But there's money in it, so there's many studies being done.

best of luck and skill,

=seymour=