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CLL Support Association
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Tired of being tired (cll)

Hi there. Just had a few days of feeling ok but then woke up today feeling like im wading through mud. So, so tired, aching neck & throat, headache and a dull unpleasant ache across the top of my back, between shoulderblades. Has anyone else experienced this, it happens every time i feel like this 😞

Thanks

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Nev1,

Sorry you are feeling so poorly! Obviously you need to keep a watch on the symptoms, but it sounds like you feel as though you are "getting sick". You know that feeling when you wake up and everything is hurting and you just want to pull the covers up and lay back in your misery. We have all been there. My oncologist says that is how most people describe their tiredness from CLL. They feel like they feel when they are "getting sick". Except we really don't get "sick"; we just go on feeling like we do when we are coming down with the flue or a cold. Hope you feel a little better soon as have more good days.

BeckyL

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Thankyou BeckyL. It seems that there are shorter times of feeling well.

Thanks for your kind words

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Are you on treatment?

I am W & W, and am taking Ritalin for fatigue. It has helped, somewhat.

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No i have just been told that it is highly likely i have cll, waiting for blood results from the hemotologist. I have all the symptoms including bruising on my stomach, recurring shingles, joint / bone pain, fatigue, rashes that look like little blood spots, swollen lymph nodes in my neck, constant aching throat. Its really affecting my day to day life. Hope you are ok and can continue on w&w without having to have treatment.

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Yes. I am just dragging. Saw my Oncologist just yesterday. In addition to tiredness experiencing: anxiety, depression, pressure in my chest, sleepless nights, etc, etc. He had absolutely no comment whatsoever. I couldn't believe it. I guess the clinic (or somebody) getting $10,000 a month for meds has them just to "shrug their shoulders". Just get plenty of sleep and don't "overdue" anything. Good luck

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Ugh, atleast we have caring people on this blog!

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Given that some of us may spend literally millions on drugs in our lifetimes it puzzles me why we are not treated like very valuable customers! Customer service model has a long way to go in medicine.

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If you have cll, make sure you got to a doctor that specializes in your disease.

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Yes, exactly what I have been experiencing since completing Chemo a year ago. I haven't been able to get any answers and the problem continues to get worse. The doctors look at me like I am making this stuff up.. I really hope to learn something from others who may reply to you.

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Hi Nev, I totally understand how you feel. I'm 51 and coming up to my 4th anniversary of diagnosis and w&w. The main symptom continues to be crushing fatigue, and I get that aching you describe just between my shoulder blades too. Thought it was just me!! If I could plug into a massage device just for that area it would be great! I think the terrible thing about w&w is it opens up all sorts of worries every time we have a headache or are feeling more tired than usual. Most people would attribute it to lifestyle or a phase, stress, whatever, but it's so easy for us to leap to conclusions re progression of disease. The genie is out of the bottle but we're too tired to deal with it! I also hate the way it turns me into a whinger who gets competitive about the level of fatigue! My poor husband has had it drummed into him so many times with me shrieking "you see? I'm not exaggerating!" Every time someone posts about the depth and severity of their tiredness. Terrible! I'm sorry you're feeling so tired. And totally understand. It's life sapping. The only thing I can say is that sometimes we're delivered periods of slight relief with lesser fatigue symptoms. And it's on those days you remember that life isn't always a struggle and we're still here living it! Good Luck!

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Hi Lucy

Thanks for your reply & hope you are ok. Do you get many other symptoms? I also get recurring shingle type symptoms which are becoming more frequent and more bothersome, the headaches are awful.

I wish you luck

Nev1

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Dear Nev, I've been lucky so far, really. I do get the odd very sweaty nights (but think they are more hormonal than cll rated) and when I was first diagnosed I had pains in my sternum. It's also fair to say that for the last five months I've had ? Tinnitus like symptoms. Constant ringing in my head and "gluey" ears. This follows a nasty bout of sinusitis. I wonder if anyone else also has this? And feelings of dizziness. I did consult a gp who thought nothing sinister and keep meaning to go back as may need follow up in ENT. Re your headaches, until recently I worked in a doctors' surgery and I remember a newly diagnosed patient complaining of headaches. He would have been around 70 I reckon. Anyway, we soldier on! I am lucky enough to be on holiday in Tuscany at the moment. Good for the soul!

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Thanks for replying & have a restful holiday.

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I stay tired all the time as well. It's depressing to not feel like doing the things that make you feel alive.

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I have tiredness too. I am stage 0 still says my oncologist, hematologist. Also neck pain and my ALC is 9,000.

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