so tired…

[LG1948]

Good morning. I was diagnosed in December 2022 with mild CLL. My problem is that I am so tired all the time I just don’t feel myself. But the doctors tell me that I’m fine and that it’s not from the CLL. I looked on the Internet and I saw that fatigue is common in all stages of CLL. Not sure if there’s something else wrong with me. Has anyone in the early stages of CLL had this experience? Thank you for your help.

[lankisterguy Volunteer]

Hi LG1948,

-

My GP and hematologist tell me that diagnosing the cause of fatigue is one of the toughest things they encounter. It often takes a determined effort and stepping through a process called "differential diagnosis" to eliminate many more common causes of fatigue before concluding that treatment of the CLL will help.

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Each of the 4 times I started treatment due to CLL symptoms, fatigue was my most significant symptom, but I also had elevated ALC (Absolute Lymphocyte Count) / Lymph# enlarged lymph nodes & spleen and borderline HcT & platelets. But fatigue pushed me over the top to start treatment.

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If you are not seeing a CLL expert doctor (check this list: cllsociety.org/newly-diagno... then you can get a free 2nd opinion by video from your home with a CLL expert here:

cllsociety.org/programs-and...

and that doctor can advise whether they think your fatigue meets the treatment requirements of the iWCLL2018 guidelines

pubmed.ncbi.nlm.nih.gov/295...

There is wording like this for starting treatment:

Disease-related symptoms as defined by any of the following:

Unintentional weight loss ≥10% within the previous 6 months.

Significant fatigue (ie, ECOG performance scale 2 or worse; cannot work or unable to perform usual activities).

Fevers ≥100.5°F or 38.0°C for 2 or more weeks without evidence of infection.

Night sweats for ≥1 month without evidence of infection.

-

Len

[LG1948 in reply to lankisterguy]

Thanks Len. Thanks to my CLL support group I have a CLL specialist. I don’t believe she thinks my fatigue is related to my CLL.

[lankisterguy Volunteer in reply to LG1948]

You can find lots of other replies by looking for the box on this page labeled:

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-

Len

[LG1948 in reply to lankisterguy]

Thanks!!

[CycleWonder]

LG1948 - As Len noted already, there are many, many causes of fatigue. CLL specialists look for specific features of fatigue that may indicate that the CLL is progressing.

For me, the fatigue that caught the interest of my doctor was a fatigue that overrode the usual feeling of euphoria after hard exercise. Instead of feeling like bouncing around the house after a bike ride, within a few minutes of getting back, I felt a deep fatigue that lasted for 3 or 4 days. It interferes with my ability to do my set of household chores. I had to sit down and rest after 5 minutes.

This also corresponded with other treatment markers - weight loss, enlarged spleen and lymph nodes, increases in absolute lymphocyte count, platelets and hemoglobin dropping.

I experienced fatigue prior to my needing treatment. For me, that was related to back pain.

I felt a tiredness earlier on that I now attribute to being emotionally challenged from the diagnosis. My diagnosis was unexpected and very unwelcome. It took awhile for me to come to terms with it.

If you can, ramp up your exercise or start an exercise program that works for you. Work with your doctors on what else might be making you feel tired. Try to improve your sleep.

Don’t be shy about asking for help from a therapist. I talk to mine every two weeks. We all know we’re mortal but a diagnosis tends to bring that more clearly into focus and is very unsettling.

Exercise can help you.

[LG1948 in reply to CycleWonder]

I do exercise most days on my trampoline or walking. I know how important it is to keep strong as we age. Thanks so much for your response.

[AussieNeil Partner Administrator in reply to LG1948]

LG1948,

Unfortunately, many specialists, particularly if they don't have many CLL patients, dismiss claims of CLL being a cause of fatigue. However, as you have read, it's a very common symptom, even in the early stages of CLL/SLL. CLL specialists suspect it's due to the cytokine signalling from all the CLL cells, causing similar symptoms to what you experience when you are coming down or dealing with an infection - so the fatigue can be stated to be like dealing with the flu. Some of us express surprise that they are so fatigued when they have a low absolute lymphocyte count, while others with much higher counts are fine in this regard. That observation might seem inconsistent, but CLL cells are in their dormant stage in the blood; the CLL cells in our bone marrow and nodes, (including the spleen, which can be slightly enlarged but not enough to be detectable without a scan/X-ray), are more active, sending out signals to manage their microenvironment to keep them protected. I started feeling increasingly fatigued in the decade prior to my 'SLL' diagnosis, only developing a high enough lymphocyte count to meet the 'CLL' criteria a couple of years later.

It's great that you are exercising most days; sometimes I've found that going for a walk is sufficient to wash away the fatigue so that I can work productively. Other times the fatigue is just too overwhelming and can only be addressed by sleeping.

Neil

[CoachVera55 in reply to AussieNeil]

That is very interesting about ‘increasingly fatigued in the decade prior to diagnosis’. I remember in my twenties how one day just thinking about going to work had me wondering how I would I manage. I mean literally the thought of going through the doorway of work was overwhelming. I had bouts of anemia with a very heavy menstrual cycles eventually needing a hysterectomy in my 30’s. This moment in my life stood out because I had so much going on, school/work & a very active social life. I was married by 20 & having all kinds of symptoms but I kept going & never researched my medical condition. Anywho I was diagnosed at 44 & fatigue was the biggest single symptom I can remember from way back. The doctors took a year to diagnose me after I was certain something was wrong but even at a battery of test, the Lymph Node had to pop out of my neck & wave before being biopsied & diagnosed. My diagnosis now is my excuse to take the best care of myself. Repeated infections was the next popular symptom. Please improve your Nutrition & maintain a regular fitness regime LG1948 #GODSPEED

[LG1948 in reply to CoachVera55]

Best to you. You’re right about nutrition. When I get down, taking good care of myself tends to go by the wayside. Thanks for the reminder..

[LG1948 in reply to AussieNeil]

Thank you Neil. I guess I have to focus on exercising even when I don’t feel like it! It is a very strange diagnosis, you’re sick but, hey you’re fine! Don’t know what to think when you actually don’t feel fine. I almost feel like a hypochondriac.

[Pacificview]

Yes, many members including myself experienced fatigue.

[LG1948 in reply to Pacificview]

Thank you. I’m starting to think I’m crazy….

[CycleWonder]

When it’s hot, we like the workouts from TeamBodyProject. You can search on YouTube for TeamBodyProject Standing Aerobic or they do sitting ones as well.

[Nucleusman]

Yes I am 82 and always tired and fatigued. Try to ignore it or change lifestyle ie get up later do less things than before

[LG1948 in reply to Nucleusman]

Thank you. Best to you!

[kitchengardener2]

I was diagnosed in 2018. My consultant can't understand why I have never suffered fatigue even when my levels of anemia increased. I am taking Acalabrutinib which has brought my levels down to normal ranges. Apart from a non existent immune system, I feel really well.

Do you have a Clinical Nurse Specialist, I find that I often get answers to questions from mine whilst my consultant is often too busy to discuss problems.

I am 71 and live in the UK.

[LG1948 in reply to kitchengardener2]

Hi I’m in the US. No I don’t have anyone to talk to although my Dr. is excellent. Glad to hear you are not fatigued. That’s amazing.

[LG1948]

Yes I think the emotional impact of the diagnosis is minimized along with the fatigue issues. Maybe some therapy is called for.

[Ellecie]

I am so glad you asked this LG1948! I too was diagnosed in Dec 22 and have been feeling similar. I don’t have an answer or solution, sorry, but am going to carefully go through the responses. Thank you everyone! Also: LG1948, you are not alone!

[LG1948]

Thank you. All of these responses and suggestions have made me feel better. You can definitely feel very alone with this.

[stevesmith1964]

Hi, CLL is a bizarre condition with a range of symptoms. I was diagnosed stage 4 in Dec 2020 at the age of 56, no symptoms no fatigue, even now in remission i have no symptoms or side effects. I immune system is buggered but apart from 3 covid infections I have been infection free and get regular IVIG when I need it. Living a full and normal life. On the other side of the coin I know people have terrible symptoms and side effects from the drugs.... so I count my self very lucky. Keep safe

[LG1948 in reply to stevesmith1964]

Thank you. Glad to hear you’re doing well.

[Hidden]

Yes. Diagnosed in November 2022. Fatigue was my first symptom and it started in November 2021. At the time I thought that I was so tired due to the stress of my son's girlfriend living with us- she is really difficult. I have accepted the fatigue as it's something that I cannot change. I do get at least 8 hours of sleep and I'm doing my best to avoid stress. I do a lot of deep breathing.

My CLL expert at Dana Farber says there's nothing that can be done for the fatigue outside of getting enough sleep, and resting if you need to.

[LG1948 in reply to Hidden]

Thank you. I’m overwhelmed by the number of people who responded to my question. It’s just so nice that people are there to support you.

[Hidden in reply to LG1948]

I don't know how I would have adjusted to my diagnosis without this group!!!

[LG1948 in reply to Hidden]

I can see why. I’ve never asked a question before. Good to see the caring here. Thank you!

[Willowbug]

I was diagnosed in 2019 and still in watch and wait. I was tired when I went to my gp to find out why I was so tired all the time and I’m still tired all the time. Now my Oncologist tells me I shouldn’t be tired from my CLL. I went back to my GP and she ran all kinds of tests and found nothing to cause this fatigue. I don’t get it either and it is frustrating, however, it is a major symptom of CLL and I leave it at that. I do walk indoors regularly to try and help. You are not alone, hang in there! 🥰

[LG1948 in reply to Willowbug]

Thank you so much. It’s good to hear although I’m still tired but at least I don’t feel like I’m crazy too!!

[Katie-LMHC-Artist]

Before I started treatment (Dec. 2022) I had some fatigue, loss of appetite, and weight loss. Since I started treatment, I have had increased fatigue (due to my low RBC and the medication). I started to increase my morning protein by drinking a protein drink (Kachava) and eating an egg. The increased protein intake has helped. I may still get tired, but now it is the late afternoon. You may try increasing your protein. The added protein also helps to keep our bones and muscles strong! Just a thought!

[LG1948 in reply to Katie-LMHC-Artist]

Thanks I will definitely do that. I’ve never been one to eat my vegetables, but I’m trying to be healthier in my eating habits.

[sdowney8600]

I have heard the same thing from my doctors. I do have other medical diseases like autoimmune arthritis & sarcoidosis that I am dealing with; however, right before I was diagnosed with CLL/SLL, my fatigue went through the roof. I used to be able to walk 2-3 miles on a good day, and so some chores around the house when the energy sparked. But last spring/summer my energy dropped and the fatigue became crushing. And I was told the same thing. I was diagnosed with the CLL/SLL that summer.

One other thing I should mention is that this happened to me before and it turned out I had secondary adrenal insufficiency—my cortisol was depleted, as was my ACTH, which your pituitary secretes to tell your adrenals to secrete cortisol. So it wouldn’t hurt to get a morning cortisol test just to ensure your levels are within the normal range. It should be at its highest in the morning between the hours of 8:00 and 10:00 am, and then it slowly starts to decline throughout the day, with lowest levels being at night so we can sleep. This is not the same as adrenal fatigue. Adrenal insufficiency is measurable through blood tests and needs to be treated with medication (usually hydrocortisone tablets) if it doesn’t rebound in its own & until the root cause is discovered. It can be caused by getting steroid shots and sometimes through use of other medications.

Just wanted to throw that out there just in case. I was shocked when it happened to me but the level of fatigue was the most shocking of all. Best of luck to you and don’t just accept the non-acceptance of your symptoms.

[LG1948 in reply to sdowney8600]

Thanks for that info! I’ve had thyroid disease for years, so when I felt so tired, I went to my endocrinologist, but turns out my thyroid is fine. I’ll ask about the adrenal insufficiency. I’ve never heard of that.

[skipro]

Good morning

CLL does cause fatigue and you also need to have a doctor check for other things like

Anemia

Low Thyroid

Diabetes

Low testosterone if male

Other disorders that can cause fatigue

Skipro

[LG1948 in reply to skipro]

👍. So many possibilities…

[DanBro1]

I was diagnosed with CLL in November 2020. Fatigue was an issue. A year ago I could not spend 5 minutes on my elliptical exercise machine at level 1 without feeling exhausted. I can now spend 45 minutes at level 12 on my machine. The difference was replacing my aortic heart valve. It was like flipping a switch. I had what is called a TAVR procedure. I recently read that Arnold Schwarzenegger and Mick Jagger also had this procedure. Takes about an hour while you are awake (drowsy). One night in the hospital and you go home. It has made all the difference in my energy level.

[LG1948 in reply to DanBro1]

👍

[Farrpottery]

My husband has been so tired for the last 10 years he’s been treated for CLL. Don’t let anyone tell you tired isn’t from CLL, it certainly is a part of it.

Blessings to you,

Farrpottery

[LG1948 in reply to Farrpottery]

Thanks for the encouragement 🥰

[tonyfrench]

Fatigue is one of the main reason's I had to "retire" from work(even tho I worked in a call center, Stress was/is the main key to my fatigue)

Stress can be the first Domino that causes your Fatigue to kick in, but like you've been reading from everyone here is that no one person has the same amount of Fatigue or reason for why, over the past almost 6 years, I've learned that I have to listen to my body, if I feel like I can do some things(cleaning/getting groceries) I do it, if I'm tired and my body lets me know I need to "take a nap", I take a nap

I pray that you can have good days where the fatigue isn't bad

Frenchie

[LG1948 in reply to tonyfrench]

Thank you. Same here!

[Pearlpink]

thank you all of you for talking about the fatigue.

I agree that it cam make you feel like a hypochondriac because some of the specialists deny it’s CLl. But the super specialists completely acknowledge it.

My fatigue was totally not related to a diagnosis as it got progressively worse for four years, and I wasn’t diagnosed! When I was diagnosed I looked back at blood tests, and I had been investigated by so many people but Noone looked for CLL, they just put my high white count down to post pancreatitis.

In fact, when I was diagnosed I saw a small improvement in fatigue as I started eating 30 different fruits and vegetables a week, etc, was obsessed with finding things to help my fatigue. There was a relief at finding the cause and I had a family history so it wasn’t so frightening. I thought I would be one of the ones who wouldnt ever need treatment!

Thank you Neil for a wonderful description of fatigue and how we are all different. For me, hearing that some other people get fatigue is a big comfort after all the denial at my first hospital! There’s nothing worse than feeling rough, and someone else telling you that you don’t! 😂

Thank you for asking the question!

[LG1948 in reply to Pearlpink]

Thank you. It’s so reassuring! Gotta eat those veggies!!

[Vlaminck]

This is a long shot but have you been tested for epstein barr (mono)? When immune system is weakened, it can come roaring back as I know first hand. In fact, it was my new bout of epstein barr (ebv) that led to CLL diagnosis. And I have never felt the fatigue I felt when I had ebv! To get up and walk across a room felt like I suddenly weighed 300 pounds (I'm under 130). Might be worth just checking? They now routinely do a viral load tests for ebv when I have my CLL bloodwork.

[JerrysGirl3 in reply to Vlaminck]

Along with mono, get special lab tested for lupus which is caused by the mono virus !!

[LG1948 in reply to Vlaminck]

No I never have. I’ll t add Klein to my Dr about it. Thanks!

[Guffy]

Hi there. Wow. A lot of support for you here. I was diagnosed 5 years ago. Not being treated, but I get mildly tired every day. Some days more so. After lots of inconclusive tests a neurologist told me it's probably CLL. Like others have said, it's hard to tie fatigue to CLL. It's good to rule out other causes, but if you were fine before diagnosis, but tired now? You know your body the best. Pace yourself, plan the things you wanna do, but keep doing the things you enjoy. Hope you can get some resolution. Cheers!

[LG1948 in reply to Guffy]

Thank you. Yes I appreciate all the responses so much. Thought maybe I’d hear from a few people!! It is frustrating not to have answers and I guess living with CLL is living with a lot of uncertainty. And a long list of doctors….

[Guffy in reply to LG1948]

That's for sure! 😁