Fatigue

[Theruff1]

Hi Everyone , i’m new to this Forum . Well i’ve been following it since my diagnosis last november but this is my first post . i’m on watch and wait and don’t have any symptoms except one and that is fatigue . It seems to have got worse over last 7 months and every morning it’s a struggle to get out of bed and it’s causing me some anxiety . Has anyone got any advice or in a similar situation? Would love to hear if anyone can help … cheers

[lankisterguy Volunteer]

Hi Theruff1-

We have had 1469 past discussions about fatigue- it is one of our most common and complicated side effects of CLL- see: healthunlocked.com/cllsuppo...

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What is usually done is having your GP separate out and eliminate the easy to test causes like anemia that can be caused by deficiencies in several key vitamins or minerals.

mayoclinic.org/diseases-con...,

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Because CLL damages our immune systems we are susceptible to a wide range of

common infections that usually affect children and then are controlled by their immune system.

These include EBV (Epstein-Barr virus, aka mononucleosis or HHV-4 webmd.com/a-to-z-guides/eps... )

and CMV ( mayoclinic.org/diseases-con... ) but there are many others. en.wikipedia.org/wiki/Herpe...

It sometimes requires a very dedicated doctor to dig deep into this area, but the Infectious Disease specialists that treat patients with HIV, Multiple Sclerosis, and other immune compromising conditions are the best at sorting out those causes.

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And finally CLL itself can cause cytokine releases- similar to what happens when you get a cold or flu, see frontiersin.org/articles/10....

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Len

[Theruff1 in reply to lankisterguy]

Thanks Len .

[Vlaminck in reply to lankisterguy]

interesting idea to see MS specialist, etc. I'm in position to trying to find epstein barr specialist, since I show viral load off and on, and lately on, but there aren't any such specialist around-- and maybe doc re these other issues would be more willing to do a bit of detective work.

[lankisterguy Volunteer in reply to Vlaminck]

You may want to refer to this definition of Infectious Disease specialist: webmd.com/a-to-z-guides/wha...

SNIP: What Is an Infectious Disease Doctor?

Infectious disease doctors test your blood or other body fluids to look for specific antibodies — cells produced by our immune system to fight harmful foreign substances. These tests can indicate what kind of infection is present.

For bacterial infections, treatment usually involves antibiotics. These can be administered orally or directly into your veins through an IV.

Other diseases may require antivirals, antifungals, or an anti-parasitic to treat the infection. Many infectious diseases have similar symptoms. Infectious disease doctors are trained to perform and read tests that can identify the cause of an illness more precisely.

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Len

[Vlaminck in reply to lankisterguy]

Thank you, Len. Literally on the verge of calling Virginia's ID clinic yesterday, but hesitated because none of them mentioned epstein barr as the many things they deal with. I had someone (just retired) but he also had little experience (it seemed) with epstein barr. I note there are folks at the NIH studying it, and that is also something I am considering.

[Thundercat2]

Welcome to the forum Theruff1. This is a good place to find helpful information. If you look to the right of your post you will see a lot of other posts about fatigue.

Have you been to a CLL specialist or hematologist? They can check your blood work and see if any of the things that Lankisterguy mentioned are part of the problem. You may have something else going on that's contributing to it.

I hope you can find some answers as it's no fun to be tired all the time.

[Theruff1 in reply to Thundercat2]

Thanks Thundercat2 , yeah i’m seeing a CLL specialist . When i was originally diagnosed it was borderline anaemic but When i saw him a few months ago my red blood sell count was back up in the normal range and my lymphocytes had gone from 18 to 14 so was encouraging but since then my fatigue feels like it’s got worse. I will contact him next week and see what he thinks ….Cheers

[Vlaminck in reply to Theruff1]

How delightful that lymphs went down!

[Theruff1 in reply to Vlaminck]

haha yeah any small win

[jacjar1]

I'm in same boat as you. On BP meds, lowered my A1C and using sleep apnea machine to help with tiredness. Treating the comorbidities has helped a bit. Still seem to be tired even to the point of not wanting to move. Grateful to have an understanding CLL specialist who listens to my concerns tries to address them and looks for ways to make the fatigue better. When I had a general oncologist he insisted that my fatigue was not related to CLL. Still may not be all CLL related but at least my specialist is looking.

[Theruff1 in reply to jacjar1]

thanks , yeah i will speak to my consultant next week and see if he has any suggestions

[JigFettler Volunteer]

Welcome!

Fatigue! It's the no 1 symptom I suspect. Mine was bone grinding Fatigue before treatment. Len lankisterguy has given you links to many numerous discussions.

Probably associated with cytokines. Immune proteins. I have felt the same fatigue briefly with a few of my vaccinations.

Don't forget your general fitness, not to be neglected. Other causes of fatigue do exist. Check in with your GP. Anaemia, sugar, thyroid etc.

Jig

[Theruff1 in reply to JigFettler]

thanks Jig will do

[Jacksc06]

Hi Welcome to the family, I see that you have already had some sound advice from others. Just wanted to say hello and if you need support, information or just want a rant we are all here for you Best wishes.

[Theruff1 in reply to Jacksc06]

cheers Jack

[Theruff1]

Thanks Jammin , The Fatigue definitely feels like it’s got worse over the last 7 months but maybe it’s just my realisation of the life i’m facing . Will try and hang in there .

[Sunsurfsand in reply to Theruff1]

About 6 months after diagnosis, I started going to the gym on a very regular basis - 4 to 6 times a week - did 2 to 3 miles on the treadmill. Also, yoga once or twice a week. Once I got into the routine & built up my stamina, my fatigue lessened dramatically.

[Theruff1 in reply to Sunsurfsand]

👍🏻

[Vlaminck]

This fatigue thing has me wondering what comes first, fatigue or depression. My periodic lack of energy leads to lack of enthusiasm. Am I depressed which leads to lack of enthusiasm? Or is the lack of energy for enthusiasm naturally depressing me. Added to this, I have periodic epstein barr (mono) which they believe is cause of chronic fatigue syndrome, so I'm dealing with it, but always wondering as to cause. I do still have intermittent days full of energy, but not enough.

[SofiaDeo]

Fatigue so severe I could barely get out of bed contributed to my starting CLL treatment sooner. My labs were still normal, but the fatigue, inability to think properly, and almost pure white bone marrow had me looking for treatment before things started failing. My particular variant is unusual, more rare as opposed to common, and considered hard to treat. I jumped the gun a bit on a bone marrow biopsy, gave my initial hem-onc carte blanche to do any test. I think this was partly due to how quickly the CLL was diagnosed. I had been having a series of infections over the summer, and for my overall white blood cell count to jump from around 10,000 to over 50,000 in a few months had them thinking an acute leukemic process initially. I went from "well" to "can't finish a work day" within a week of first feeling something was "off". Thus early, aggressive testing.

[Sunsurfsand]

About a year before my diagnosis, I had a feeling that something was wrong. My body just didn't feel right. I was surprised by the CLL diagnosis but already "knew" something in my body had changed.

[DriedSeaweed in reply to Sunsurfsand]

I know what you mean. Several months before my nodes ballooned something felt wrong.

[janvog]

When I feel real tired, I start to walk on my indoor treadmill. After ten minutes, I feel more "normal". The oxygenation and relaxation of the muscles while walking on the treadmill energize the system.

[jacjar1]

Did you ever find a way to control your tiredness. I have done some experiments to try and get a handle on my tiredness and fatigue. These few things have helped make it better, hasn't gone away but it is helping.

1. I reduced my caffeine intake. I was at 3-4 cups of coffee a day and now its one cup. I was using the coffee to get through the day but my tiredness was inconsistent. And like i should have know the crashes were getting worse. So far its made a big difference.

2. Decided to get back on a diet. I was on Keto when i first diagnosed, lost over 40lbs. But stopped due to being tired and thinking I needed more carbs. Gained 10 lbs. back and now I'm on a low carb diet. So far so good down 7lbs, my energy levels stay consistent through the whole day.

3. Exercise; I had been walking 2-3 miles 3X a week but that got difficult to do again I was tired. I am still not able to get the miles in as before but do 3/4 to 1 mile a few times a week. I know what my limits are and preserve energy for when I know I'm going to be doing a lot of yard work etc..

4. Reduce stress. I have a somewhat stressful job. I am better at pacing myself and walking away more often when the stress is high. Taking breaks walk around the block or the building when I'm in the office.

I am monitoring my carb intake to make sure its balanced and I keep a clear head. Still tired but its better controlled, which is my CLL life. Just keep it at bay and put off treatment. I know its coming numbers have doubled since Feb., spleen pain getting a bit more bothersome, occasional night sweats. But under control for now.

Hope you feeling better!

👍😀