Hello!! If my test is fine, absolutely no disease, perfect markers! Why I feel so tired, dizzy and with a bad body? Diagnosed in August 2016. In treatment with ibrutinib since October 2020. Anything to avoid this horrible fatigue? Sometimes I feel i'm dying... Thx . Cheers. D.
Tyred and Fatigued: Hello!! If my test is fine... - CLL Support
Tyred and Fatigued
Written by
Denisguay
To view profiles and participate in discussions please or .
Read more about...
58 Replies
•
lankisterguyVolunteer
Hi Denisguay,
-
This Patient Power article may be helpful: patientpower.info/what-clin...
-
Len
Thank you very very much. There are talking to do exercise. I do an hour and half a day. Swimming and gym exercises. The rest of The day I feel so tired and confused...
If you work out for an hour and a half everyday then no wonder you are tired 😃. I would be tired too! Per my experience the trick is to not overdo it. The older we are the more time we need for recovery. Either short bursts of high intensity training which can be over in 20 minutes (depending from one's overall condition, hemoglobin levels at cetera) or medium intensity training - about 45 minutes a day. I don't count slow intensity like walking the dog or gardening towards exercise but these activities are very healthy of course.
I dont think so. Are you joking? I did exercises all my Life and never I was tired. Lol
Yeah, I wish I could exercise like I used to exercise 20 years ago as well. Having CLL and being on Ibrutinib is less than optimal for endurance I imagine. Realistic expectations ...
U are not realistic but conformista. I Also studied nutritión And more and more things. Fruit dont produce Gout neither affect uric acid. NO!
I see. Stick to what you think works best for you. Good luck.
..and for you! We are on The same boat!! Be careful with The electromagnétics fields!!
No worries. I never leave home without my tinfoil hat 😃
Hahaha you're ……. crazy!! Hat is not a solution, because electro waves enter from below from behind! Jjj
Denisguay please refrain from using this kind of obscenity on this site. It’s now been edited out.
Newdawn
But you now have a disease that changed you. There is something called Cancer Related Fatigue because it is real, and some of us get it.
No. It is part of The same disease. That's Clear.
I do not understand. We have CLL, which changed us. We are on medication, which can have side effects. Some side effects come right away, some side effects do not show up for years. We get older, which can cause changes. The pandemic had caused emotional stress, which can affect us.
That is absurd. I had The same syntoms without medicación.
It is not absurd. I used to be very athletic, and one of the symptoms that made me go to the doctor was severe fatigue. I have Cancer Related Fatigue, and treatment may or may not affect it. Treating my cancer and getting into a remission helps, but I have never gone back to the energy I had before this diagnosis, You may have it too.
my.clevelandclinic.org/heal...
Please don't come here, ask questions, and then ridicule our suggestions. Say "I don't understand" or "I find it hard to believe", but don't tell someone their suggestion "is absurd." We strive to be polite.
Thanks, I just read through this, and clicked on Eat the Rainbow. There is a new course starting in a few days for 12 weeks. So signed up. I eat enough fruit but at the moment perhaps not enough veg for some reason. Will try anything. And will get more blood tests from GP
Everybody eats fruit because it's sweet. Not for the vitamins, that's just an excuse. Big mistake. Fructose is toxic. Whatever diet promotes eating large amounts of fruit, especially sweet fruit or even worse, fruit juices, is a fad. Fatty liver and excess uric acid, then Gout are the result of too much fructose consumption.
You don' t say serious things, It is better don't say nothing that to say inconsistent occurrences!! Gout It is because an excess of meat, sea food, alcohol...and sedentary Life!!
You are very wrong about that. When you spent a decade studying nutrition like I did, we can talk. It's not enough to repeat nonsense you heard somewhere. You could start by reading the book I suggested.
Gout It was The disease of Kings. Do you know what they ate,?
Yes, they ate too much. And they were the only ones able to afford lots of sugary stuff too. We are all kings now. When you are running around in a hypocaloric state because you are hungry, whatever you eat will not cause gout especially if you work hard physically at the same time. Which we don't anymore. So it's complicated. I'm not talking about those times. Given you never had gout and never had to treat it yourself because no GP could help you I appreciate your willingness to listen to someone who had and did.
I see that you dont' know what they ate. Not plum cake neither Dona.
I'm not sure what you're trying to tell me. I know precisely what caused gout in my case. Because after eliminating what caused it I have it no more. Eliminating organ meats, seafood and legumes did not fix it and I tried it many times during the two decades that I had it. Eliminating that stuff had absolutely no effect on my uric acid levels. Eliminating sugar and fructose did the trick. I am mostly on a meat + organ meat + eggs + veggies diet now. And if I eat meat it has to be fat. Pork belly, pork knuckles and the like are the backbone of my diet.
And alcohol. Did you drink alcohol?
It is the mixture of all those that cause the problem, especially alcohol, also the excess of sugar influences of course. Meat by itself has no harmful effects. Are you on a Keto diet?
Gout can be caused by decreased excretion of uric acid, increased production of uric acid, or a high dietary intake of purines.
Added sugars of any kind isn't generally considered healthy, and added fructose can contribute to metabolic problems, even Dr. Lustig does not say "avoid fruit". Dr. Atkins didn't say "avoid fruit". Lustig says "avoid high sugar fruit juices" as part of promoting eating whole foods, with their fiber. Not food items stripped of fiber. High fructose corn syrup is a different creature than a banana or raspberries.
Now, if someone's genetics are such that even low carbohydrate fruits are not being tolerated, that's one thing. But I don't think it's appropriate to try to make blanket statements about various real foods and try to apply them to everyone. As we evolved, we changed genetically, and those who could thrive on local foodstuffs had an evolutionary advantage. Those peoples flourished. You know all this 😊
I agree. I didn't say that the only reason of gout is high fructose consumption. it's one of many. What I warned about is high amounts of sweet fruit consumption. I had friends who ate three bananas and three papayas everyday and then were surprised to have gout and a fatty liver. Because the doctor told them that fruits were healthy 😃. But as always the devil is in the details. Though I appreciate that dose makes the poison, fructose is still a poison even in small amounts even if attached to a bunch of fiber. Small amounts we can tolerate but there is no harm in avoiding it as much as possible. As someone who suffered from gout for over 20 years and took medication for it intermittently, then got "cured" for good by avoiding fructose and upping my meat, organ meats and sea creatures consumption (the GP could not believe she was wrong all that time with her outdated advice as to what is the cause of gout and high uric acid levels) I am living proof of what I preach 😃
If you take medication, ALOPURINOL??? can't you say that it was the diet that cured you? My God!!
I don't take it anymore. I stopped taking it 10 years ago and my uric acid levels have been perfect ever since I changed my diet. No more gout either.
Medication for uric acid It is not permanent.
? As I said, 20 years of taking it intermittently. Not anymore in the last 10. Do whatever you wish with this information.
After 20 year with treatment you are healthy!! Are you a woman or a man? use the logical!!
I think before you reply to anyone at least you should check their profile to know who you are talking to and what their history is. If you can't do that much I don't know how anybody could help you. By the way the only "cure" for my version of gout is dietary intervention. The type that I do. There is no other cure. Allopurinol cannot cure it.
Hi SofiaDeo,, here is a quote from a pubmed page. ..published in 2013 ...i am wondering if anyone has done these randomized trials yet that they mentioned ??? "Whether there is a link between fructose, HFCS, or sucrose and increased risk of heart disease, metabolic syndrome, or fatty infiltration of the liver or muscle remains in dispute with different studies using different methodologies arriving at different conclusions. Further randomized clinical trials are needed to resolve many of these issues" ------Here is some info that coincides with your comment
"Fructose is a simple sugar that occurs naturally in fruit. It's what makes your fruit sweet. It's also processed and used in commercial table sugar and added sweeteners.
The fructose in whole fruit is different from the sugar found in processed foods and doesn't cause the same blood sugar spikes and dips.
Eating fruit, especially berries, can actually protect you from blood sugar spikes.
Studies show diabetics who cut fruit completely from their diet do not see meaningful improvements in their weight or blood sugar levels.
You can still enjoy fruit if you have type 2 diabetes! Choose lower glycemic fruits to incorporate into your well rounded whole food plant-based diet.
Eating fruit can lead to weight loss, not weight gain.
Whole fruit is best, but smoothies can still be enjoyed on a whole food plant-based diet when you follow these guidelines." ----- Indeed it is the fiber and the antioxidants in the fruit that make a huge difference in how the body responds to the fructose we eat ... i am taking calquence and i eat lots of fruit ,whole grains ,veggies etc. no animal products at all and i am feeling MUCH better then i did before taking calquence . my anemia has improved dramatically .....my main focus now is drinking enough water , moderate exercise every day and trying to get to bed before 10 pm ... i always appreciate your input to the forum . blessings , james
Citations
There's been some work in this area:
theheartfoundation.org/2020...
news-medical.net/news/20200...
Here's a 2018 look at "Fat, Sugar, Whole Grains and Heart Disease: 50 Years of Confusion"
ncbi.nlm.nih.gov/pmc/articl...
Hi SofiaDeo , thanks for the more current articles and their links .it is amazing to see once again how much sugar is in the soft drinks and ice cream ... i forwarded the links to our daughter in law who is and RN and is involved in starting a small lifestyle center ... i became convicted of the need to change my own diet and lifestyle 30 years ago . .... we were blessed to be able to go to a large lifestyle center called weimar institute . east of sacramento . the most notable success they have with their patients is a reduction of insulin for the diabetics . approximately 50% are able to get off of their insulin dependence by a diet and lifestyle change . i have been a vegan for those 30 years but not always taking care of myself ... my wife has had 2 brain surgeries , 33 years apart ... i think the stress has a lot to do with getting cancer . 2 years after my wife's second brain surgery i was diagnosed with CLL ... in august i will be 74 .......... now after 6 months on Calquence i am still vegan but doing green smoothies ,taking a few well researched supplements , exercising more and drinking mostly water and a lot more of it .. my hemoglobin has gone from 7.1 to 12.5 my weight is perfect for my height .. my blood pressure is 110 over 64 and my pulse is 60 ... i feel very blessed to have my life back again ... hope you are doing well also. please keep sharing on the forum your input is very much appreciated ... have a peaceful evening , james
Are tomatoes, avocados, zucchinis, peppers, pumpkins, and eggplants/aubergines fruits, vegetables or berries? More seriously, shouldn't we be considering what to eat based on nutritional and other dietary values (such as whether they contain beneficial fibre), rather than whether it is considered a fruit, berry or vegetable?
With respect to vegetables, even there you can't escape the influence of consumer preference, with sweeter vegetables being preferred. Brussel sprouts were bred to be less bitter for example, by selecting for less glucosinolates, which is recognised as having cancer prevention properties in brassicas.
Neil
I could not put the ones you mentioned under a common umbrella 😃. Starchy vegetables are still much better than sweet fruits. Fibers are necessary but way overrated. I get most of mine from coconut flour and shredded coconut meat.
You are confused by too much alternative medical literature.
Trust me, I know what confused is, because I was confused for 40+ years of my life. Not anymore. Now it's you and people like you I know for a fact to be confused. And that's about as much as I can say in general. Because the times I used to evangelise my findings are over. I am not trying to convince anybody of anything anymore because that's a wasted effort and useless most of the time. I can only share so much but everybody has to do his own homework. Most are unwilling to do it, so...
I find your statement that fiber "is overrated" very interesting and confusing, because Dr. Lustig in the book Metabolical promotes fiber heavily. Whole foods, containing fiber, to feed our gut biome. His discussions on fructose I interpreted "in the light that fructose doesn't have a metabolic function, and can be actively harmful, best not to ingest artificial sources of it, and here's why". Many of the metabolic pathways in our own body have potentially toxic byproducts, but they exist and our bodies deal with them.
And you know all this, you are highly educated. People questioning, and trying different things, is not confusion IMO. Once again, everyone is different, and it is great that *you* have found the type of diet that works for *you*, but admonishing people who enjoy different foodstuffs and do well on them, isn't going to win you converts. I think "have you tried this?, because....." is more likely to sway people into trying something. Or saying "this works for me, have you tried it?" Instead of "this is terrible, you are wrong."
Yes, I know Dr.Lustig promotes fiber heavily but this is where I take him with a grain of salt. The reason being that I read sources I trust just as much that are much less in favor of fiber. There is a contradiction between proponents and opponents of fiber and both sides make a certain sense. Therefore my deliberation goes like this: unless we actively try to avoid fiber we get enough of it in a good and healthy wholesome diet. There is no reason to actively try to consume lots of it when one's microbiome is in balance and in good shape and the person eats reasonable amounts of vegetables and some fruits. It is way more important in my opinion not to eat things that damage the gut biome. As I mentioned above I'm not trying to win over anybody to anything or convince anybody of anything I just state something that I believe to be true and everybody can take whatever they want from it and run with it or not. Gluten and fructose are bad but I'm not saying anyone that they should not eat them. And I'm glad we are having this discussion because if there is anyone on this site that knows their stuff about diets it is you. It is always a nice thing to brainstorm with someone knowledgeable.
Más cursillos?? No!!!
Hi, are you mindful of what you eat? Read this:
amazon.com/Metabolical-Proc...
I can't recommend it strongly enough.
Thanks for starting the ball rolling. Hope you can see in comments below where I have just signed up to an Eat the Rainbow course
Hi have you had all your ferritin tests and thyroid tests ?
Hi. Yes. My ferritin,, iron, THS .T4 T3 of thyroid are perfect. My test are perfect..without markers of CLL. JUST PLATELETS a little bit low. Thx.
Not what you're looking for?
You may also like...
Staying well with Covid fatigued spouse
I was diagnosed with CLL one year ago, but have had lifelong autoimmune disease issues and POTs...
Aches and pains
I was diagnosed with CLL about 6 weeks ago and am due for my first follow up appointment with the...
feeling down and sick
Hi there everyone im not well at the moment im getting sick of feeling sick with cll I no ive given...
Watch and wait but feeling rubbish :(
I was diagnosed with cll stage 3 in August15. After getting over the shock I feel that I have been...
Stages and symptoms
The one thing I am finding with this site is that no one ever states what stage they are in. 1, 2,...
new to this and CLL
swelling in leg and ankles..numbness in my feet and hands
Anxious, worried, and sad 
IVIG and Illness
