Fatigue

[Alibaba26]

Does anyone have any tips for managing fatigue - I find this overtakes my life daily, and if I do anything it can take me days, even a week, to recover!

[Poodle2]

What is your Hb like and have you had your iron/ferritin levels checked?

[Alibaba26 in reply to Poodle2]

Ferratin is 55…my Hb is 39…I was cream crackered all the time since before diagnosis whilst I was undergoing tests. Not working at the moment as find I sleep every afternoon!

[LeoPa in reply to Alibaba26]

What kind of unit is a hemoglobin 39? Mine was 144 g per liter at last check

[Alibaba26 in reply to LeoPa]

39 mmol

[LeoPa in reply to Alibaba26]

"Reference Range. The reference ranges for hemoglobin (Hb) concentrations in adults are as follows : Male: 14-18 g/dL or 8.7-11.2 mmol/L (SI units) Female: 12-16 g/dL or 7.4-9.9 mmol/L (SI units)Nov 27, 2019"

emedicine.medscape.com/arti...

Even stranger! You have 3 times the upper limit. Can I have half of them pls😁.

[Alibaba26 in reply to LeoPa]

I am an oddity 😂 my lgM is low though!

[lankisterguy Volunteer]

Hi Alibaba26

You are asking about one of our most often discussed challenges. This link will take you to the 1775 previous postings about fatigue. healthunlocked.com/cllsuppo...

My GP told me that fatigue was one of the most difficult symptoms for the doctors to work through "Differential Diagnosis" en.wikipedia.org/wiki/Diffe...

Because there were so many possible causes and narrowing it down to a single cause and treating that cause took significant time and effort from the medical team.

Some of us believe that the fatigue connected to CLL has subtly different symptoms and characteristics than fatigue from anemia, you many find some of those explanations in the "Related Posts" box on this page.

I hope you can find some clues and possible mitigation techniques.

-

Len

[Toothdoctor in reply to lankisterguy]

I get it; fatigue is definitely an issue. I admit I take guarana. Also, I don't eat processed food, very little sugar, watch my carbs, do cardio, and take lots of supplements and olive oil, which we buy from the Olive Oil Hunter, so it is the real thing. I do Tai Chi, lots of deep breathing, and meditation. Trying to stay positive too!!! ❤

[Sepsur]

I would follow the same advice given to people with chronic fatigue or ME.

Give special attention to the phenomenon of ‘Boom & Bust’.

When we feel well, we do too much & then suffer double.

The trick is to do less more often😊

[Alibaba26 in reply to Sepsur]

thank you…listening to my body is a trick I’ve had to learn very quickly…had a very hectic couple of days over the weekend two weeks ago and it pretty much wiped me out for a whole week…we live and learn!

[Livingwith67]

At the very beginning of my CLL journey 5 years ago, I was diagnosed because of the fatigue being investigated. So I have lived with it for a few years now, I was very kindly given some time with a fatigue specialist who apart from being a truly wonderful lady was a great listener, who for the first time ever really heard how tough things could be each day. She got me to log everything I did and how I felt fatigue wise, physically and mentally and slowly over time I could see firstly how much I was actually doing and secondly how different activities affected the fatigue. It wasn’t just physical activity, it could be socialising, certain people are draining, or driving or too many appointments ect that gave me a tough day, and sleep rarely recovered a bout of fatigue, like you say, days to recover sometimes.

It taught me to balance my days better, I only tend to do one thing each day or one thing in the morning, one in the afternoon now and not so much pressure on myself to fill my days. I often do more, but that’s choice on the day. I’m definitely better in the mornings as the day goes on things are harder. You might be better in the afternoons, book things for when you feel at best.

I did a whole re vamp of my nutritional intake and gut health and changed jobs to a less stressful one, all of these things helped.

I’ve recently completed a year of treatment and I’m back to tough bouts at times, now seems to be stairs and carrying things and still driving/travelling which triggers fatigue, although I can walk miles, without too much problem. I had to work up to this though, I walked a tiny way to start and gradually increased it, walking through the fatigue at times. Some days the exercise gave me energy some days it was just really tough and I never knew which day that would be, I was always hopeful. Acceptance of a new way is a big part and celebrating ourselves in the small achievements and not being hard on ourselves when we don’t.

The nhs offered me a fatigue course recently with the ‘next steps’ team, I don’t know if you have this in your area, but if you do it could be something to consider?

I wish you well on your journey and know you’re not alone with the challenges

[Alibaba26 in reply to Livingwith67]

Thank you and good luck with your journey too…it’s a long and winding road!

[Tommays56]

in my case I was working a physicaly demanding job and running a LOT and it just wore me down to nothing

I had also picked up and infection something a new GP found in a stool sample that was hearing me out and causing low grade fever for almost a year before it was cured with a crazy dose of two antibiotics and everything improved after this

After a pretty long recovery period and retirement I recovered pretty well and was able to ride my bicycle quite a lot again and carefully rebuilt my fitness

[Alibaba26 in reply to Tommays56]

Yep my job was very demanding…I couldn’t physically or mentally do it anymore! I walk to keep fit energy levels allowing!

[Nucleusman]

first make sure you are tested for iron deficiency I was given ferrous sulphate then live with fatigue and adjust lifestyle accordingly- you ain’t what you were before

[Alibaba26 in reply to Nucleusman]

Apart from my Ferratin levels I think my iron is ok…my IgM s low; mean platelet volume, neutrophil, lymphocyte and monocyte all high…just been diagnosed with bowel disease too, my calpritectin level is high (inflammation marker) at 316 ug/g

[ChristineAM]

I've been having more trouble recently. My potassium and Magnesium were past low so I've been taking supplements. But at the same time my Dr increased my Statin. Got really fatigued. I've decreased it and I have a little more energy now, so statins may have a role in fatigue.

[Alibaba26 in reply to ChristineAM]

I don’t take statins…cholesterol and blood pressure all ok 👌

[CLL_Canada_Group]

You might find this Canadian website useful, it is wholly devoted to managing cancer fatigue

mycancerfatigue.ca/

[Alibaba26 in reply to CLL_Canada_Group]

Thank you

[skipro]

Alibaba,

Sorry to hear about your fatigue. It can be severe.

While CLL causes fatigue, there is a long list of fixable causes that your doctor should check like anemia, thyroid, hormones, etc.

God bless and good luck

[Alibaba26 in reply to skipro]

Thank you

[Islandvibes]

I noticed you have had some autoimmune stuff also. My CLL not that bad only 20 % bone marrow involvement , but I have had severe fatigue since forever. I also have lots of autoimmune ( which could contribute to fatigue also) . I think my fatigue is slightly better since I started on ZANU but not by much. I had to retire early and now I set a goal a day or not and that's good enough for me

[Alibaba26 in reply to Islandvibes]

Thank you

[pete-paz]

when i was first diagnosed the doc said extreme fatigue was a symptom of CLL so i said well... i wake up at 4:30am to work out and then work for 10 hour a day, my commute to and from work is 70miles each way, i have grandkids and 2 dogs so based on my life style what would we call "extreme fatigue"...haha depending on what is causing the fatigue i would say you need to first make sure you are getting enough good sleep, next if you can do it (if you are not already) you need to get in to an exercise routine the will help increase your energy levels. even if you can just go for a 10-20minute walk once or twice a day. next i would check your diet, what are you eating? healthy diet will help with fatigue as well

[Alibaba26 in reply to pete-paz]

As balanced a diet as my IBD allows…there are certain foods that are a total no go for me unfortunately…do eat a lot of fruit and veg.

[Suzi_]

my remedy is simple-

10 minutes of quiet meditation, no distractions, deep slow breathing and a short walk in the fresh air!

I hope it helps!

[sidesy]

Hi, I remember telling my NHS consultant about extreme fatigue and he said it was probably in my head .....one of the most unprofessional people I've ever met! My private journey has been a revelation compared to that fortunately 🙏

Fatigue....one of my least favourite parts of this disease. It's the unpredictable pattern...one day I'm fine then totally wiped out.

I have learnt the hard way doing too much there's only one winner and it's not me !

So I tend to break up jobs into small parts and tinker over completing them ....

My day also incorporates :

>Cold therapy dips each day

>Grounding my feet for 10mins

>Sun on my face when available

Both give me energy post dip and I try and manifest on what I want to try and achieve that day. It doesn't always work out but at least I formulate a mental plan..

I try and eliminate any stress or worry I can and I find CBD full spectrum helps with this for me any way.

I take a whole host of pills and potions including ;

>Shilijit

>Curcumin

>Lions mane

>Berberine

>Folic acid

>MCT C8 oil

>Brown rice protein

To name a few 👍🏻👍🏻👍🏻

I start off my day with scrambled eggs and bacon and not the normal carbohydrate route and this helps me prevent that low energy I felt around 11am. I think changing little things which can make a noticeable to how you feel.

As I started in previous posts I do take a pre workout liquid to help those times when I need to be alert or I feel very tired which helps me immensely. I find the liquid pre works better.

I'm not saying this will work for everyone or is recommended but there are options and one thing I've learnt is if I feel extremely tired I rest and recharge ....go with it not against it.

I wish you well in your own journey 🙏

Gary 🙏

[Jooby59]

It's a coincidence to read this today as I am suffering really badly with fatigue. It is an effort to do anything. I am on a clinical trial and my meds were increased from 200mg daily to 450mg. This was only a fortnight ago and I think my body is adjusting but goodness it is p*****g me off!! So you have my complete sympathy. x