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CLL Support Association
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Fatigue

I was just reading some messages and decided to join the group... I was stunned to be diagnosed with CLL 3 years ago.

I have always been healthy and active.... frankly, I thought the fatigue was because I was over 40, and that everyone felt this way...

I am in the w/w stage... but can’t believe the fatigue.... I eat well (always have), maintain a healthy weight.... but struggle to stay awake mid afternoon ... and want to sleep/nap.... it’s like an alien has taken over my body.... I now often nap after work....

I have never slept in, even as a teenager.... and now I can sleep until 10 or even 11 on weekends... and then frustrated that I missed mornings... I am befuddled....

Now, I am fighting to stay awake... never mind focus...I used to work 50-60hrs a week, take care of my home and cottage...now I am barely keeping up...

I guess I am venting, but my family counts on me to take care them, they don’t know..( yes, I realize that adds to the stress)....

anyway, what are your strategies to manage the fatigue? All ideas and suggestions are appreciated...

Thanks

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I'm slowly getting more and more fatigue DFM so I know what you are saying.

I try to stay active, recently I started renovating my back yard, pulled up all the grass (Small Patches), and now in the process of paving, that keeps me off the couch and active in the afternoon.

Fatigue is getting worse tho, hopefully your family supports you, try doing some small projects,

Keep active as much as possible, it will help.

Make yourself some veggie juice, I get boost from that

Beetroot, Celery, Carrots , Apple, Lemon, Ginger ..... ZAP instant boost.

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Thanks for the reply... I do stay pretty active, but it’s been surprisingly challenging lately... I appreciate your comments.

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Hi DFM,

I also experience fatigue, I was diagnosed 6 months ago at age 49 and have recently turned 50 and am also on w/w.

The fatigue is sometimes what I can only describe as crippling.

I often wonder if Im actually imagining it as I don't have any other significant symptoms I find it a difficult concept to grasp with no "physical " signs that I have an actual condition. I think my family/friends also have a hard time realising that because I don't "look" sick or having active treatment doesn't mean that at times Im not feeling great. Ive even had a friend say "if your not having treatment it can't be that bad"

This is a very difficult part of CLL for me..

I can't really help with your fatigue apart from the obvious suggestions of getting enough sleep reducing stress etc, Im sure you are doing all that you can in that area, and as you have mentioned you are already eating well and maintaining a healthy weight.

But I can tell you your not alone in your struggles and it does at times help to vent!

I would also suggest that you always rule out other possible causes of the fatigue, as sometimes we tend to overlook things as our focus is on CLL.

I agree with Eric, juice is great!

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Juicing should be seen as a possible adjunct to a good diet. Relying on juicing to supplement a poor diet ironically may have adverse health effects: healthunlocked.com/cllsuppo...

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Couldn't agree more Neil, I only juice as an added benefit to an already balanced diet.

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Prior to treatment, I, too, had crippling, debilitating daily fatigue. I compared it to narcolepsy because when it struck, my body turned to lead and there was nothing I could do to keep my eyes open. I'd slip into a coma-like sleep for 40 minutes. It could strike in meetings, in restaurants, while at the gym or during my daily 3 mile walks. If driving I'd struggle to pull over to the side of the road. The good news is since starting treatment 6 months ago (ibrutinib & obinutuzumab), that kind of fatigue is completely gone. Now I just have general fatigue which is manageable with coffee and exercise.

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DFM

I was Dx year and a half ago and except for the fatigue I am fine...but don't let whitecoats tell you the fatigue is in your head or to "take a walk" or eat better. The fatigue is a result of an overproduction of something called Cytokines....they create a immune response in the body....you always feel like you are sick, about to come down with the flu sort of thing.

It can happen to anyone, at any time and has nothing o do with blood counts....I read a few articles that said it effects young (under 50) women 3x as much as men.

You can get Ritalan/Adderral/Vyvance from your doctor (if they will give it to you)...I used to get some, but again, it seems to help woman way better than men....and it didn't work for me.

S.

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It did not work for u because you don’t have ADHD! Adderal is used for focusing and not for giving u energy. What kind of doctor gave u this?? U don’t have ADHD!

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Scott isn't the first member with CLL and struggling with fatigue to be prescribed Adderal: healthunlocked.com/cllsuppo...

And here's Dr Wierda, the well known CLL specialist from M D Anderson on why Adderal can sometimes help those with CLL fatigue: patientpower.info/video/wha...

"So the Adderall and Ritalin are stimulants, so they work as stimulants with patients with CLL, and as you say with some patients they will be effective in treating the fatigue.

They have the opposite affect for individuals who have ADHD where even though they’re a stimulant, they work particularly in those individuals to focus them, and they don’t act as a stimulant in those individuals. They have an opposite effect."

Neil

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At 8 years old My first born was diagnosed with ADHD. He was prescribed Ritalin. He took it for a while and it was a nightmare. He lost weight and was not the bubbly little boy anymore. I stopped it and changed his diet. I would give him black espresso every morning. He’s 28 now and doing well. I suggested he study on this affliction as it can be a gift as well as a curse. He studied it and although he still has temper tantrums he no longer gets speeding tickets. University students here take Adderal to focus during exam times. I am not into pills unless absolutely necessary. Rare I take a Tylenol.

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Thank you to all for your support, comments, suggestions, shared stories and feedback. As another stated, I am grateful to now have this “place” to talk with strangers about a shared situation.

Good luck and best wishes to all

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Hi DFM2018,

Sorry to hear you've been struggling with fatigue. Unfortunately the next one is a long way off but Leukaemia Care run a patient information day on fatigue. We have had great feedback on the day so I do hope you'll come along if you are looking for tips on coping and a chance to meet other patients: leukaemiacare.org.uk/suppor...

If you feel like you would like more information before then, please do get in touch with support@leukaemiacare.org.uk, we have the materials from the information day that we may be able to share with you now.

Very best wishes.

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I really would love to get to your part of the world... :)

Take care

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Hi, I have crippling fatigue and in the next few months will start treatment. I have learnt to pace myself and also to accept lower standards. I had to get a cleaner because of a back pain problem and I am so grateful now. A gentle swim twice a week helps and another hour in bed some days. I have learnt to relax and not to worry. Do what you have to do first and make sure you do some nice things when you can. Anne

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Yes, basic exercise is necessary, take cate

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Fatigue is something that affects many with CLL, some more than others. As Scott said this is very real despite many Haematologists telling patients it is unconnected with their disease (as in my case), and can be severe even in the early or pre diagnosis phase. There is no magic bullet to overcome this but keeping active and eating a good diet may help to some degree. This symptom is also a strong contributing factor in making a treatment decision and for many fatigue will be much reduced if not eliminated as a result of treatment. In the meantime alterations to work and lifestyle are probably the only realistic options to manage the fatigue, so plan on taking it easy in the afternoon when the fatigue hits and dont be afraid to take a nap when you feel you need to. Best wishes.

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Hi DFM! I realized that I posted this link to you on my thread and I’m not sure you saw it, so I thought I would post it here to yours as well. It’s an article I found here with possible help in dealing with fatigue. Best of luck!

healthunlocked.com/api/redi...

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Nothing to add to great advice given. My favourite tip? PRIORITISE. It took a long time to get used to that. In fact ,I’m still learning. Honestly, look hard enough, there really are some things you can leave occasionally. Also, hard though it is, learn sometimes to say no-not easy I realise.

Presume you’ve read the ‘coping strategies’ from PaulaS . Very useful.

Peggy 😀

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DFM, I’m 4 years in and have experienced the fatigue you talk about, but for me it comes in long waves...weeks or months of battling general fatigue, then months of what feels like normal. I don’t see any clear causes. But I do observe that if I have some short nights due to one reason or another, it takes longer than one night to get back in a regular sleep cycle — so for me it has been helpful to maintain as regular a routine as possible.

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