Feeling Low

[vinnet]

I was dx CLL stage zero 6 months ago.

For past few weeks I feel very tired. I feel as though I have not rested, when I wakeup in the morning.Eyes are heavy and general malaise!! Late evening it becomes better.

Is this due to CLL?

What can be done to reclaim freshness and energy.

[Kathp]

Hi Vinnet we are very similar in that I was diagnosed in October 2016 and over Christmas was signed off work for three weeks due to CLL lethargy. (I live in the UK) We think it's because my sleep was broken (a lot of early morning awakening) due to my trying to compute everything in my head at the beginning - plus a very busy spell - and an office move - at work.

Blood tests did not show CLL was the cause but my Vitamin D levels were very low so am now on a course for a couple of months (till the nicer weather!🙂)

I must admit I do feel better - my heavy eyes have gone and I feel much more positive. That awful sinking feeling has gone too.

Hope this helps in some way?

Let us know how you get on 🙂

[vinnet in reply to Kathp]

Thanks Kathp.

If u r feeling better now then it gives me confidence that my lethargy can be eliminated! I need to get my D tested as it was low in october 16 when i was diagnosed and four doses , once a week for four weeks , were given.

Thanks again

vinnet

[Kathp in reply to vinnet]

Yes, maybe worth checking. I hadn't realised until a nurse at work mentioned it - t doesn't help that I work in a room with no windows so that doesn't help either!

Take care

[Cllcanada Top Poster CURE Hero in reply to vinnet]

Get your OH(25)D (VitD)levels check as well as yout B 12 and folate...

I had a diagnosis of CLL and doctors stopped looking at other reasons for my mind numbing fatigue... but a B 12 test showed I had none no uptake from the gut... and in fact had pernacious anemia and no intrinsic factor,IF... monthly B12 injections corrected it and improved my fatigue levels somewhat...

Intersting I had been on anti-depressants for a number of years and once my B12 came up... I was totally able to get rid of them, haven't been depressed in years...

~chris

[KellyM in reply to Cllcanada]

Chris, I am so glad I read your comment. I have been experiencing more fatigue than usual for about 6 to 8 weeks now and feeling depressed as well. I have an appointment with my local hematologist/oncologist tomorrow and will ask him if B12 level could have anything to do with it. I already take a vitamin D supplement due to that being a bit low.

[Cllcanada Top Poster CURE Hero in reply to KellyM]

Your GP is the guy for B12, hemetologists aren't usually the right doc for this... from my experience.

[Newdawn Administrator]

I think many of us can identify with your description Vinnet and I absolutely endorse the suggestions you've received. Vit D has helped me in terms of reducing infections but there are other issues that stubbornly persist and it's hard to know if they're totally CLL related.

It did however make me think of a little poem I did a few years ago (apologies to the real poets amongst us) which sums up the feelings;

'I woke up this morning,

(Well that's a result!),

I winced with the backache

And put on a brave front.

What's aching or paining?

Why am I so hot?

Shall I go for a brisk run?

Am I losing the plot?

I'm itchy and crampy, nose runs like a tap.

Brain's dropped to a slow speed and

I need a deep nap.

I'm up now, I'm showered, I've had my green tea,

I'm not sick with reason... I'm on Wait and See!

It's not your condition, it's all in the mind...

Be grateful dear patient....you've got the best kind!'

Newdawn

[wroxham-gb in reply to Newdawn]

Brilliant!!

Sue

Says it all.

[Kiannjo in reply to Newdawn]

Yes, brilliant. Overcoming the mental /emotional toll of this diagnosis has been my husband's greatest challenge thus far....

[Seven6 in reply to Newdawn]

Love the poem Newdawn. You manage to encapsulate CLL feelings.

Thank you.

Seven6

[vinnet]

Wonderful poem, Newdawn.

I will try with my GP if the problem is mental or due to cll ?

vinnet

[Beargrove75]

The first 3 months after my diagnosis I was in a funk. So tired, I went to bed at 8:30 p.m. Had to get 10 hours of sleep at night to get through a day of teaching high school art. Sometimes I still need 10 hours of sleep but I really think it was mostly a depression of knowing I had a cancer. Once I had all those initial tests done and results back and was told about W&W, things settled down and the past 4 years have gotten much better!

[vinnet in reply to Beargrove75]

Bearg

You made my day..

I also believe that mind is playing dirty tricks... Can you confirm me if you are now feeling almost similar as u felt before dx ?

Doctors keep telling that CLL causes fatigue, as the cells produce chemicals which cause exhaustion. But I am unwilling to buy this argument.

thanks

vinnet

[Beargrove75 in reply to vinnet]

Yes, that first diagnosis is shocking but once I got used to the W&W mainframe, I would say I feel like I did before diagnosis. Have had some other health issues since. Had melanoma removed from my face almost 2 years ago and had a couple of biopsies 2 weeks ago from other spots. Still waiting on results. Right now I'm dealing with lower back issues due to age and loss of discs between vertebrae. Chiro is helping but can't lift much weight.Best wishes, Vinnet.

[vinnet]

Thanks Bearg

I am 65 and live near new delhi.

How old are you? Where do u live?

Are your other problems linked in any way to CLL? If yes, can anything be done by me now to prevent?

I have started supplement like wheat grass juice and green tea. Also minimised dairy products.

vinnet

[Beargrove75 in reply to vinnet]

I am 68 and was diagnosed about 4 years ago. Live in Iowa, USA. I take a basic multi vitamin and vitamin D3 when I remember. I also take Perservision since I have the start of macular degeneration. I know I feel better if i limit my sugar intake. I am not fond of green tea but drink other teas.I have some health issues but never sure what is related to having the CLL. At 68, it can just be age when I feel crappy!! I know that fatigue is common and I often need 9-10 hours of sleep. The less sugar I eat, the better I feel. Sugar causes inflammation for everyone--joint and muscle pain for me.Best wishes, Vinnet

[vinnet in reply to Beargrove75]

thanks beargrove75.

Any commercial name for D3 and its potency?

How about vitB17? And vit C?

Good to hear that u r on wnw for 4yrs already. I am 65 and i really wish to be on wnw for next 10 years.... GOD willing...

[Beargrove75 in reply to vinnet]

vinnet, I take D3 2000 IU potency.The brand is Nature Made. I think Target stores sell this brand as do many local pharmacies. I do not take B17 nor Vit. C. But I do want to tell you that when my husband had open heart surgery this past January he was put on a dose of B12 and a good dose of Vit. C. plus a few other vitamins. They help to promote faster healing Not sure if this would be a benefit for CLL.

I have probably had CLL for the past 9 years but only diagnosed 4 years ago when I discovered a lump under my arm. I have had a severe reaction to the insect bite, no-see-ums. I am really careful now to wear a cap and net over my head when I go outside. I live in a wooded acreage and we seem to have lots of insects. If bit on the head, I swell up as big around as my hand and as thick as my hand so to the Dr. and given a round of prednisone and antibiotics for cellulitis.

Have an appointment with oncologist in a few weeks. I need to check what my markers are for the CLL so I can compare with others. I have been told that mine is very indolent so try not to worry anymore about it.

I like this forum where we can compare, vent, or whatever!! Since no one else I know has CLL, this is a good place.

[vinnet in reply to Beargrove75]

Thanks a lot .Beargrove

i will take d3 and see.

I am dx 6months ago. My biggest single problem is lack of body energy!!! Both palms feel oily, tongue dry, heavy eyes....

Onco does not give any advise. One says I may need treatment in one year, other says five years... God knows whom to believe.

Could I be thinking unconsciously, or have gone into depression, which is causing low energy? Or CLL causes this fatigue? Did u experience fatigue in past 9 years?

vinnet

[Beargrove75 in reply to vinnet]

I was extremely tired the first 6 months after dx. I really think it was a depression I was going through. Once I realized this was something to live "with", I got much better. Slept at least 10 hours a night then and sometimes I still need 9 hours of sleep if I've had a busy day.

I started taking tumeric tablets a few weeks ago. Want to see if that helps my immune system. I also take a multi vitamin when I remember to take them.Have a pill box that I put my supplements in and that helps to remind me most days!!

I also have Hashimoto's which is an autoimmune disease of the thyroid since 2002. I also have to watch for skin cancers.Had melanoma removed 2 years ago from my face. Seems like one thing leads to another!!

Hope this helps you a bit.

[vinnet in reply to Beargrove75]

thanks beargrove. Do I assume that with multivitamin and turmeric and long sleeping hours, you feel normal energy levels.It is very assuring.

I was dx 6 months ago and i have no other medical problem. CLL came as a rude shock in my routine annual health chk. I tend to believe that fatigue is all due to my own making due to negative thoughts in my subconscious about CLL. I , however do not know, if my belief is true .

vinnet

[Beargrove75 in reply to vinnet]

Yes, I think that when first dx, a person is going to be in a funk. Especially when they tell us there is no cure so we watch and wait till you get bad enough to need treatment!! It took a good 6 months for me to get over the shock of cancer!! I have learned to pace myself with whatever i chose to do. I do feel beat the day after if I over work myself. But eating healthy and staying positive helps beat the depression that causes my fatigue has been beneficial for me.

I get a deep tissue massage about once a month . Helps get rid of knots in my muscles. Can't say I feel better after that but I think it helps with some of my pain.

Have a friend who said her dad had CLL and lived to be 90 and never needed treatment for CLL.He died of old age or something else!!Stay positive!!

[vinnet in reply to Beargrove75]

Thanks Beargrove.

There are many case histories in this group itself where no treatment was ever needed....

I also get once or twice a Ayurveda massage everymonth to detox.

I wish both of us and many others with Cll well, with prayer that we live and enjoy our normal life without ever needing treatment ..

vinnet

ps: send me ur email id. I will send u an ebook which does not see cancer as disease but a friend.

[vinnet in reply to Beargrove75]

Beargeove75

I am now 12 months old in CLL.

I am writing again because I am feeling even worse these days. I just dont know what to do. I was hoping that i wud have started to feel same as before dx. I am sure i had CLL at least three years before dx.

Any advise will be very useful

vinnet

[Beargrove75 in reply to vinnet]

Vinnet, sorry you are not feeling any better. I tried tumeric for awhile but felt that it didn't make any difference. Just had a CAT scan yesterday and will see the oncologist next week Monday.I have noticed a few more swollen lymph nodes but the fatigue is still here. If I'm tired I go to bed early, like 8:30 p.m. Everyone seems to have fatigue with CLL so pretty normal for us. I do try to take my vitamins and cut back on added sugars. Sugar inflames the tissues for everyone.So cutting back or out, should relieve some of the joint and muscle pain as well as fatigue. I doubt I will ever feel like I did 10 years ago , age does take its toll as well as the CLL. Take care.