I am 62, female, diagnosed with CLL in August 2012, though I've had it for a while. I've felt this unusual tiredness since around 2009. The haematologist and GP don't seem to think this is connected with CLL. I am overweight (gonna join Weight Watchers in January) though I eat healthily and do not smoke or drink. I go to Curves gym 3+ times a week and walk regularly. I know there are a huge number of causes of fatigue and I would be pleased to be able to do something about mine. I lack energy/tire easily. My B lymphocyte count on Monday was 8.6. I realise that I'm fortunate re my health at the moment and hope this continues. I have had difficulty sleeping for many years.
Could my fatigue be due to my CLL which is 'on... - CLL Support
Could my fatigue be due to my CLL which is 'only' Stage A? My red cells are ok so I'm not anaemic.
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Gartshore
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Hi Gartshore
I am really sorry you are suffering with fatigue. I will be brief here, as I wrote a blog about this in October (you can find it if you go back a few pages of the blogs, to the early ones). There are many responses, which you might find useful to read.
The simple answer to your question is "yes". This is both mine and numerous others' experience, with CLL, no matter at what stage.
Sadly, many medics do not yet recognise this, despite it being the most common problem people will go to their doctor's with, in the first place and then discover they have CLL.
I have not found any way to cope with this, except by sleeping/resting when necessary. I believe that exercise can help and others may come up with more ideas.
I am a patient and not a medic and know that it is very hard to live with - you have to listen to your body and pace yourself but it can be very frustrating.
Take care
sparkler x
It is important to discount other causes of the fatigue but it is very commonly reported by those that have cll despite being told by their doctors and consultant that their bloods do not explain/cause there fatigue. Some consultants seem to accept that it is a symptom of cll even in the early stages for some people even if the cause is not obvious.
So we have to manage our fatigue as best we can push as far as we can but learn to listen to your body - you are the only one who knows how you feel. Mindfulness may help come to terms with where you are today but you will still be very tired.
Being exhausted all the time is only made worse by not knowing what is causing the tiredness so helpless to do much about it. Being told it is not cll does not help! This just makes the whole state of W&W more difficult to live with.
Our journeys are all different but exhaustion does seem to be part of the journey for many
Take care
Thank you for your understanding and prompt reply. I am participating in a Mindfulness course just now and I concur with your views on this. 'Being' rather than 'doing' does relieve stress and frustration.
I suppose that many of us look well and, relatively speaking, are well. But, this is why it's so good to get online to others who have experience of 'fatigue' which is concurrent with CLL. It sometimes feels as if a GP is slightly incredulous re this type of tiredness.
Thank you and all good wishes.
Gartshore
NewdawnAdministrator
Hi Gartshore, I agree with the others on this. The evidence says no and experience says yes to the connection between CLL and fatigue. Like you I was diagnosed this year and was at similar levels on diagnosis. However, I also believe I'd had the condition some time and had begun to feel unusually tired even after a good night's sleep. It could be however that your insomnia is contributing to your daytime fatigue.
Obviously it's important to eliminate any separate physical cause but it sounds like you've done that and have a reasonably healthy lifestyle.
I'm convinced internal stress causes emotional exhaustion too and under intense pressure, I can become quite tired.
Im just going with the flow and if I need to rest, I give in to it. Hard at times when there's things to do and impossible for people in full time jobs. I find I have to alternate really busy days with quieter ones wherever possible but I do push myself too hard at times.
Things sound relatively good for you at the moment though and I hope it continues.
Regards,
Newdawn x
Hi Newdawn - Thank you for your pragmatic, sensitive and sensible reply. It's so good to hear of others' experiences. You are right that all possible contributing factors (of which we are aware) to the feeling of fatigue should be considered, and, if possible, addressed. The issue is complex but your advice re listening to your body and resting when you need to is sound (not like my sleeping, teehee, though I'm taking a sleeping pill just now). I think that a feeling of guilt re not doing enough adds complication to the situation.
Thank you, and look after yourself.
Gartshore x
I too agree that fatigue is common in CLL. When I was working I would nap during my lunch hour. Set the alarm on my cell phone.....
CllcanadaTop Poster CURE Hero
My CLL fatigue lasted 5 years pre-diagnosis until treatment a year ago for CLL, and was so bad by year 2, I was forced on long term disability for 12 years. Devastating financially..
There are few 'theories' by some leading CLL researchers, but not cut and dry proof.
I also lost 55 kgs over a period of 3 years and that made a real difference in my fatigue and quality of life... it also set my CLL into a regression...
Get health, eat right and exercise...worked for me... and when treatments comes along, you will probably be in a much better position to handle it...
Dr. Terry Hamblin, a UK CLL researcher, discussed this a few years ago...little has changed
mutated-unmuated.blogspot.c...
~chris
Thank you, Chris, for all of this information. Dr Hamblin's article is very helpful and interesting. I am MOST impressed with your intentional weight loss and exercise regime! Congratulations on taking control of and sorting out that which is within your (all our) power to fix. It's heart-warming to hear that your QOL has been much improved.
It's a shock to hear that we have an incurable illness and quite misery-making to be told just to forget about it completely when it obviously DOES affect our lives. You're 'further along the road' than I am - and you've learned much along the way. I am interested as to how you know you had CLL for 5 years prior to diagnosis.
Major illness can have a devastating effect financially and your having to deal with this on top of being unwell is awful.
I'm inspired by your dieting success and will make a serious attempt in this direction - after the New Year!!
Take care
Gartshore
I asked my doctor about the fatigue, particularly after reading Sparkler's blog, which was so encouraging!
My doctor said that they try to dismiss it because it is so awkward to measure and impossible to treat. It is just 'one of those inexplicable things', so doctors avoid the subject.
Last night, after a particlarly lazy day, my husband and I decided to go to a late night movie with a couple of friends. I was all enthusiastic, but when we got there we discovered that there were no decent seats left. By that time it was after 10, and I realized that I was so tired and deep down glad we couldn't go, and it was not ME putting a dampener on things!
We have to face a new reality, it's not simple.
Good point, Safta. Yes, the exact reason for fatigue has not been pinpointed; it is a symptom which is relative and, at the moment, all we can do is to self-treat by changing our lifestyles a bit, in the hope of obtaining some measure of improvement.
Thank you.
Gartshore
Although I don't doubt that fatigue is a symptom of CLL, I think it's useful to rule out other things that might be going on. If you have CLL then I think it's fair to say you are not tip top health, and simple vitamin and mineral deficiencies can cause a great deal of fatigue - as I know from personal experience.
I had iron deficiency that didn't show up in a full blood count, although my iron stores (ferritin) were on the floor and I then discovered that my B12 levels were about to bottom out as well. One thing can often mask another in these tests. You have to get the nutrients tested individually to find out what going on: ferritin for iron stores, B12/folate and I also suggest vitamin D.
I think these are suggested tests in the NHS CKS work up for fatigue, which you can find on the Internet. Doctors don't necessarily follow those guidelines but seem to have their own favourite set of tests they will use when a patient presents with fatigue. I've been turning up at the surgery with fatigue on and off for years but it was only last year a GP finally mentioned my ferritin, and this year another decided to throw in the B12 test as well.
I should point out that I don't have CLL myself, but my mother does and is always low in iron and has to take supplements. I appear to have the same sort of problems with iron as she does. Taking a few supplements has made a massive difference to my level of fatigue. I wish it had been worked out a lot earlier.
I don't see why, just because a person has one diagnosis, they should not get properly checked if you have symptoms that could be due to something else. Fatigue could be due to just about anything! If nothing shows up in tests then it could be the CLL, but at least you haven't ignored something that could have been fixed.
How interesting - and you got these tests done on the NHS! I think the NHS is marvellous but I think I've noticed that in countries where people pay more directly for health care services, it seems that the medical profession are more proactive; more keen to do tests. I'm sure that mineral and vitamin deficiences play an important part in many, many diseases and that this aspect is often ignored.
Thank you.
Gartshore
It wasn't as simple as I made it sound. I was just lucky that the locum GP decided to point out that my iron stores were low-ish (by their definition, which I think is wrong, but that's another story). I had to educate myself a great deal before deciding that I should try iron supplements - and BANG, I was better in about 20 minutes. It was really dramatic, way too dramatic to be a placebo effect. I asked my GP to monitor me, and he agreed, but they only really took an interest when my levels didn't improve (in fact they got worse) in spite of supplementation.
Interesting that you point out the element of chance, ie you had a locum whose comments encouraged you to research yourself. Fantastic that iron supplements have helped you so much. I suppose iron is something we could overdose on if we weren't careful? My red blood cell count is ok just now. I am assuming this means my iron levels ok.
Thank you.
Gartshore
In the U.S, the pay for service can be good, but isn't necessarily so.
We often pay for expensive tests that are not needed, and for follow up visits that could have been avoided if medical records were available on the first visit.
Chronic illness of any sort means visits to more expensive specialists to rule out possibilities. Often, the answer is simply, "We really don't know why you have the symptoms you have" (but we'll bill you anyway).
How pleased I was to read your message, my husband has been diagnosed 2 yrs now and since the early hospital visits we have mentioned his fatigue only to be almost laughed at because he is in his early 70's and it was a case of "at your age what do you expect". In the last 6 months he has slowed considerably and can literally fall asleep mid sentence, sometimes he gets annoyed at the way he feels. He is not a couch potato and does what he can. Wish I had the guts to join you at weight watchers!! Happy new Year
Well, just to add confusion, I am stage C and probably not too far from first treatment. Every time I see the doctor there seems to be surprise that I have not lost weight and do not feel any fatigue......
Mike.
Gartshore in reply to
Mike - I'm delighted to hear that you are keeping so well. I'm sure all our CLL friends will be more than happy to know that, at stage C, things can still be so good.
Thank you and good luck.
Gartshore
SeymourB in reply to
Hidden -
This is really good to hear - both for you and for us, given the circumstances. The exceptions are often the most useful teachers.
To me, it means that the fatigue depends either on the specific mutations or some infection - likely a virus - that science cannot detect yet, but which disrupts normal cell signalling that results in us being tired.
I wish you all the best.
Re fatigue, it definitely is part of having CLL. I have found that the erratic nature of the fatigue is one of the worst things to manage. Some days I look at the stairs and they look like Everest. The next day I have my energy back and I bomb around, draining my batteries completely. It's not only confuses me but also those around me.
After going to the CLL conference in London, we were told that we should all be taking Vitamin D3 supplement and recently I started. It has been a really noticeable difference to my fatigue levels. I now wake up feeling fully rested and I dont have to rest mid afternoon. I recommended Vitamin D3 (it must be D3 not D2) to my Mother, who also has CLL and she too has noticed a difference to her energy levels.
Thank you for this. What dose of D3? How are we to know what amount of dosage of vitamins/minerals? These aspects are not mentioned by doctors I see. I have started taking D3 but am not sure how much I should be taking.
I dont know officially but I have been taking 1000 IU per day and found it works for fatigue.
Thank you. I take this too. I suppose it would be impossible to know the optimum individual amounts without blood tests.
I believe that we all process Vitamin D3 differently and I agree with Gartshore that we should consult with our Doctors first and request our level to be measured, with a blood test.
I did this last July and my level was virtually non-existant. I was given an injection of 300,000 units, as I was told that this would raise my level much faster. After 3 months I was prescribed a total of 40,000 units each month, taken as 2 capsules ( each of 20,000 IUs).
My level was tested again last week and I am now well within the normal range again.
Personally, I do think we should approach this, as individuals and in consultation with our doctors. I don't think it's a "one size fits all" situation.
I am speaking as a CLL patient and not a medic.
sparkler x
This is Gartshore. Thank you Sparkler - because, currently, since my recent diagnosis, I just self-medicate with D3. Your prompt means that I shall ask to have my levels tested at GP's in New Year.
At my visit to the Haematologist at the local hosp I said - I put it very mildly - that Vitamins D & B12 are often 'mentioned' for checking on this site amongst fellow CLLers. She said Vit D isn't measured generally 'here' (UK or Wales, I presume). She put me down for a thyroid check in six months time. any suggestions about whether I need to follow this up? (I am very intimidated by authority in the hospital!
Chris, I'm sorry that your haematologist wasn't more helpful in checking these for you. Your haematologist is, however being thorough in checking your thyroid function. Perhaps there's something that she observed in your consultation that made her think that this could be more likely to need checking than D and B12 levels?
With the recognition that a reasonable percentage of our population have low levels, there's been a huge demand for vitamin D testing in Australia , so there's push back on testing to reduce budget blow outs. I expect the same is the case elsewhere.
You might have a bit more difficulty justifying a B12 test, but here's a post on Vitamin D that has contains links to other Vitamin D posts:
healthunlocked.com/cllsuppo...
You should be able to find something you can print out to better argue your case. You might have more luck with your GP if you aren't prepared to wait another 6 months plus to follow through with your haematologist.
Neil
Thanks for replying, Neil, and the post you indicated. I just didn't know how important this was going to be, and have decided - better to leave well alone! I was seen by a very pleasant lady Dr. this time, and instead of my usual 'I'm fine', her sympathy made me talk a lot more. I found a yearly appointment made me a little uneasy, so she had changed it to blood test 6monthly and yearly appointment. I now keep thinking of all the things I should have asked her. I daresay if I see Dr Cumber (consultant) next time I'll tell him I'm fine again!
I have no complaints about the service, and am told constantly to go back or ring if anything worries me.
I appreciate your full reply, and love your photos.
Not sure if this will help anyone struggling with fatigue......
I am in my 4th year W&W and, like a lot of our community, have been struggling with fatigue. A recent blood test has identified vitamin D levels of 13 instead of a preferred 50. Have been prescribed high dose of vitamin D supplements once a week for 6 weeks and then a much lower dose of 2 a day for the future. Have taken 2 of the weekly ones so far - am still waiting for them to kick in!
On checking the pills out on the Internet (as you do), it recommends having calcium levels checked while taking vitamin D supplements as they can cause a build up resulting in serious side effects. As the GP has not mentioned this, I will discuss it my next visit.
NooNoo
I've read all of the replies to Gartshore and find each one different and interesting. I was diagnosed with CLL in May 2015 and took six months of chemo. My main complaint was exhaustion. I would get up and drag myself to the bathroom, get dressed and drive to work. I had to sit in my car to rest before getting out. In the evening I had to sit in my car and rest before driving home. I work at a church so with God's help I am not under a lot of stress and certainly not under a hard labor job, but the exhaustion was there just the same. I also help raise my two granddaughters and that keeps me busy, but they were a tremendous help during my treatments. I would say that being tired was what really made me end up in a hematologist office. My WBC was elevated. I found out from my primary doctor that my WBC had been elevated for over a year and during that time I had had major surgery. No one bothered to tell me about the WBC elevation. My concern now is that I am beginning to feel just like I did when I was diagnosed with CLL, very tired, totally exhausted, I go home from work and go to bed. I will be 69 next week. My Mother was 69 when she was diagnosed with CLL. She died in 2004 of COPD and other complications. Every post I read helps me to understand what everyone with CLL deals with. Thank you!
Hi Fayeander, I'm sorry to hear that you now feel as tired as you did before your treatment last year. It must be very hard, especially with the responsibility of two grandchildren to keep you busy (as well as your job at church). It was lovely to hear that your grand daughters were a great help to you during your treatments. Contact with young folk can be very therapeutic... as long as we have the energy...
I presume that you're still having regular checkups and blood tests - have they showed any new activity in your disease? Any sign of increase in lymphocyte count or decrease in haemoglobin? Any night sweats or enlarged nodes?
As you've been reading all the replies to Gartshore, I'm sure you'll have seen all the suggestions people have given. But it would be good to follow it up with your doctor and ask for his/her input on your situation. They could at least check on your Vit B12, Vit D, haemoglobin and thyroid levels. It would be great if something did show up, that will be treatable. They'd probably also do liver and kidney function tests. However, with CLL it so often seems that there's no clear reason (that the doctors can yet identify) for our fatigue...
I see that this is your first post on this site.. So, welcome... Do keep in touch and let us know how you get on.
Wishing you well,
Paula
P.S. Interesting that your mother also had CLL. It certainly does sometimes run in families. My father's brother had CLL, and so did one of his daughters (my first cousin).
Hi Paula, So good to receive a reply from someone this morning, I thank you for your interest. My next check up with my Oncologist is May 19, so that's only a few weeks away. I do have a history of low B12 (took injections for almost a year until starting with the chemo), and Vitamin D. I now take OTC vitamins for Vit B12 and Vit D. I also have Hypothyroidism and take Synthroid for that. All three of those labs were last checked with my primary physician for my annual physical in early February. I do have night sweats, but not sure if I have enlarged nodes. At times they do seem to be enlarged, but I second guess myself on that. I am very good about knowing my body though and can certainly tell when something is not right with me.
I keep a full file of my health, including family health history, my prescriptions, my surgeries, etc., in a computer file. There's no way anyone could answer all those questions if I get really sick and need assistance, which I don't anticipate that happening.
I consider myself to be in good health and when I say that, people look at me and ask if I really have Leukemia. I tell them I have Leukemia, RLS, Asthma, and just list all illnesses that I have. I tell them that I consider myself in good health because when I look around and see other people who are really sick, that's when I thank God one more time for my continued good health.
I was the primary caregiver for my Mother for eight years. One month after she died, my husband was diagnosed with Myltiple Myeloma and died four years later. I don't pat myself on the back, but with strength from God and very little help, I took care of both of them for twelve consecutive years, while working a full time job. I had a wonderful housekeeper who stayed while I was working. When I got home from my working job, God gave me the strength to do whatever had to be done. That was the most rewarding think I have ever done in my life. I didn't enjoy either of them being ill, but I certainly did enjoy caring for them.
I'm feeling extremely tired today, even after an early bedtime last night. It seems that no matter how much extra rest I get, my energy level does not increase. I'm at my office today, hoping that will make me feel stronger. Yes! No! Maybe!
Paula, thanks again for your reply! Hope I didn't bore you with my message today.
Faye
No you certainly didn't bore me, Faye. It's good to know that your GP has been checking lots of the things that people here have suggested, and you are being treated for some of them.
I agree with Sandybeaches about repeating Vit B12 tests, and checking T3 as well. If in the past you needed Vit B12 every month by injection, then it sounds like there could be an absorption problem there, and just taking OTC tablets might not be adequate. But as Sandybeaches has said, you do need to get your levels tested and get medical advice on any supplements, including Vit D. You need to keep in the right ranges for these things. There are risks from having too much as well as dangers of too little.
You mention also having asthma, and RLS (I presume this is "Restless legs syndrome"?). I'm sure these conditions are not helping your energy levels... Fatigue can be a very complicated thing...
I do hope you find something that helps...
Best wishes,
Paula
Hello, sorry to hear of your problems with fatigue, which is so common with this disease. It was fatigue that brought me to the doctors for testing. Anyway, to make a long story short, although I have been on synthroid for a low thyroid level for several years, my naturopath encouraged me to get tested for T3 levels as well. These levels were very low, and am now being treated since my last posting, and it has made a world of difference for me in the last couple of days. Since these levels are not routinely tested by a lot doctors, even endocrinologists, it might be an avenue you wish to explore. I am still in stage 0, W/W as I only have elevated lymphocytes of close to 70,000. My hemoglobin and platelets were a little low, so on an iron supplement and folic acid from my hematologist. Although not a medical professional, it is my understanding that too much B12 can cause problems with liver function, and my hematologist thought my levels too high, so I was to stop taking multivitamins with B12 until my levels came within normal range again. I would encourage testing for these levels before taking a supplement on your own. I hope this posting is helpful for you. All the best.
Thank you Sandybeaches, I will certainly mention the T3 to my Oncologist when I see him on May 19. The fatigue is horrible and also what first took me to the doctor. I was to the point of not being able to get out of bed, but I pushed myself to go to work every day. I guess that's why I did not give in to the tired feelings. I first noticed exactly how tired I was when I wasn't able to work in my yards for long periods of time. That is the one thing I just dreaded giving up. I could stay in my yards all day, or I could, before the CLL. I had just started feeling like working in my yards again, but have noticed in the past few weeks that I get too tired, too quickly. I have had to space myself to short 30 minute yard times. That sounds like I'm exercising, but it's more like mind exercise to me.
Thank you again for your message!
Hi, I haven't read all the replies, forgive me therefore if this suggestion has already been covered. My cller (other half) has sleep apnea, this is controlled by the use of a CPAP machine which he uses every night. This means he sleeps well and is not fatigued /falling asleep during the day. It is a problem which can affect your daily routine, and causes concern with DVLA as some people with undiagnosed sleep apnea can fall asleep at the steering wheel. He has just renewed his driving licence (he is 76) and investigations were carried out by DVLA with his medic who deals with his sleep apnea. The CPAP machine monitors how long you use it, so no cheating , and confimation was required that this sleep issue is under control. best wishes hw
cllady01Former Volunteer
Low thyroid can make you sluggish. Anemia caused by low ferritin levels (iron) can make you sluggish--and I discovered for my own situation, that the Onco/hemotologist I have does not test for the ferritin levels; I have had to ask for it or go to my Primary Care Dr. to get that tested. I am currently on iron as prescribed by my Onco/hemotologist, however.
I feel the same way low numbers but am ill pretty much daily sometimes it all day and sometimes I it's for a few hours.. I hate this
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