Fatigue is common symptom with CLL that is poo... - CLL Support
Fatigue is common symptom with CLL that is poorly recognised by doctors. Please share your experiences via this poll plus comments.
AussieNeilAdministrator139 VotersPlease select all that apply:
I've found exercise and improving my vitamin D levels has greatly helped my physical stamina, but it took several years to get there after CMV and constant infections pretty well wiped me out. Most days I still need to sleep for an hour or two in the afternoons, otherwise I find I just can't concentrate - I'm just spinning my wheels and getting nowhere. I hate the way that it breaks the day up, but sometimes even going for a walk or cycle just can't lift the fatigue and I usually feel much better after a sleep. I still find it really frustrating how I get absolutely no warning that a spell of fatigue is going to hit. I feel great one minute and the next I'm dragging myself off for a rest.
I've found you can't expect a GP to understand - unless perhaps your red blood cells/haemaglobin or thyroid is low.
I suspect many of us with CLL just don't realise how much of our fatigue is due to the CLL. The onset is generally too gradual to notice and it is only after treatment that many realise how much they've been affected. That's one benefit of having treatment that I'm looking forward to!
Neil
I have been taking low doses of Ritalin prescribed by my oncologist. I have needed to increase the dose over the last two years, however it allows me to manage the fatigue, meet work and personal demands and live with a much better quality of life. I was diagnosed 4 years ago and still in W and W.
Me too how did they decide in Ritalin
My doctor did not give a choice- just suggested trying the low dose of ritalin. Another thing that has helped was adjusting HRT estrogen levels. Seems like things are always changing...
Hi Ferne, I've only just noticed your posting about Ritalin and HRT. Very interesting. Has anyone else has experience of being helped by these things? It would be wonderful if there was something relatively simple like these, that would help us battle the ever-present fatigue.
Paula
I have had CLL since 2008 and am also still in W and W (though unmutated and zap70+). I realized years ago that I had ADHD but did not do anything about it. My sister (who also has ADHD but not CLL) started taking Concerta (a form of ritalin) recently, and she is really doing well on it. I was so impressed, I finally decided to see a doctor and find out if I really did meet the criteria for the ADHD diagnosis. He decided that I did have ADHD, and gave me Ritalin tablets that I could cut to adjust the dose till I got the right amount. Within 20-30 minutes of taking the first dose, my life changed! It was astonishing! I stopped being all spaced out, wanted to read technical things again, wanted to write, wanted to clean, my legs don't hurt at all and they used to feel very tired all the time. I have been able to work much harder and longer hours at my job in a research laboratory, I am not nearly as anxious. I don't think I'm quite as precise in my research as I used to be, but I get a lot more done. I don't know what it will do to my CLL, but I hope it won't do any harm, because I really like being able to engage more with life! Hope that helps!
I am interested in this discussion of Ritalin. What countries are you in - all US? Does Ritalin work for you? I am in the UK. I told my NHS doctor - the junior haematologist I saw last - that other countries were prescribing Ritalin for CLL-related fatigue and he just looked astonished.
Can I suggest that you make your question a separate post, rather than in a reply to an old poll? You can make your post private to the community, which should also encourage more personal replies (polls can't be made private to the community).
Neil
Have been on d3 suppliments for 2 months which has lifted my d3 level to around the recommended lower level so continuing with suppliments. I felt a significant improvement in my energy levels almost immediately but still tire very qiuickly but atleast can do something now. Managed longer walks than for more than a year. Doing a little a few min at a time - 3 or 4 times an hour with rest between - takes a long time but gets a few small jobs done in the garden.
The poll is set for current time, and like most CLL patients I have had severe fatigue symptoms in the past and they were the primary cause driving me to treatment. However since I am on Idelalisib, I have no symptoms, so I cannot complete this poll in present tense, only past tense.
I had chronic fatigue after campylobacter before u was diagnosed with cll
Am ok most of the time but fatigue seems to coincide with dizziness and hot flushes. I then find exercise difficult .
I get the same, dizziness and hot flushes and extremely tired
I get the same thing
In order to conduct a meaningful poll isn't it necessary to define the term 'Fatigue' first? Perhaps this available elsewhere on the HealthUnlocked site?
I do a lot of things, but rest in between. I find physical work knocks me for six, ten minutes on, half an hour off! I do get out and enjoy myself but then have a rest day. I've had CLL for about 10 years from my WBC count and infection after infection, including shingles in 2004, but was only officially diagnosed five years ago and I'm still on W&W. I had endometrial cancer last year and a complete hysterectomy because of it and talking to my specialist a couple of weeks ago, we both agreed it has taken me well over a year to get back on my feet again. During that time the fatigue was awful as my body coped with the CLL and the op, I'm glad to say I'm finally starting to feel like a real human being again!
Having made changes to my lifestyle since DX which have resulted in me losing some much needed weight, its fair to say i have not looked and felt this well in decades. My middle age paunch is gone with sensible eating and I seem to actually have more energy then prior to diagnosis. I am in W&W but with a very high Lympocyte count. I am enjoying the weather, getting out and about and other then easy brusing which did concern me, am trying to do lots of other things non CLL related to keep my mind busy.
don't you wish there was a "like" option as there is in Facebook? I agree with so many of your comments. Interesting that afternoon seems to be a peak fatigue time.
Try clicking the Recommend button!
12 years ago CLL fatigue was so bad, I was forced on long term disability...
Daily exercise and a low glycemic index diet did help.
Now ...a year post treatment the fatigue is totally gone...I still get tired, but nothing like in watch and wait.
The late Dr. Hamblin still has the best overview of CLL Fatigue and possible causes... mutated-unmuated.blogspot.c...
I went to my GP about three times a year for 3 years complaining of fatigue sometimes moderate, others severe. Nothing ever showed up, so last fall decided all my problems were weight related and asked for a referral to dietician. January the lymph node was discovered in my neck, diagnosis end of June, and now they tell me my Cll/Sll might be Mantle Cell.... So hard not to be impatient.... But so happy to have science, great technology and wonderfully caring team of people helping me down this imperfect path of life. I know I am not alone, and this means the most to me.
Went to GP reporting fatigue, told that since my HG not low it must be something else- blood test for diabetes and underactive thyroid- all fine. Just that time of year! Been taking Vit B3 for 3 weeks and feeling much better. Will keep eye on this over next couple of weeks but fingers crossed.
I can't say fatigue has been a problem (yet): I am pretty active (more-than-full-time job, very active kids and exercise). HG was down at 11.00 (sometimes lower) which did mean I had to slow down exercise, but I can hardly say that was fatigue. However since going on steroids for AIHA complication (so enlarged spleen), HG back up to over bottom of normal threshold (I visit Haematologist again tomorrow, so could not be higher). Full of energy.....and I don't think it is just the steroids! Long may this continue.......
Eight years of CLL with no symptoms of any type until May this year after my five monthly check up, I started to feel fatigued and breathless, which I thought was the stress caused by the shock of my haematologist telling me that my WBC count was up to two fifty and my HG 9.00. My GP, not understanding the symptoms of CLL sent me for heart monitoring tests but they were fine, however the radiologist, finding nothing wrong with my heart suggested it might be due to my CLL: my docotor scratched his head and suggested some suppliments, Vitamin D, B12 and iron which have had no effect, in fact,I think they make matters worse so now I'm off to seethe CLL numero Uno to discuss treatment but of course this warm snap and lack of oxygen in the air is not helping and probably why the fatigue/breathlessness eases as the sun goes down and moisture forms in the air.
Although I hit my most fatigued time in the afternoon, I have to say that just getting out of bed and starting my day is much tougher than it used to be. This is one of my main reasons for going to the gym early 6 mornings a week. I find the very fact I am disciplined to exercise in a way I don't achieve at home or walking, seems to energise me and keep me going throughout the morning. I take an iron with multivitimin, and ubiquinol in addition to a green tea tablet. Still nothing gets me past that afternoon moment when I just have to nap.
I visited my GP with the problem of CLL fatigue and asked if anything could be done about this. My GP said I was suffering from "M.E." !!! I did not go for that explanation and did not receive any treatment for the fatigue. Another example of how CLL is ignored by GPs until such time as the "big bang" chemo stage kicks in as a result of a bad blood test reading!
Berrytog - I would be amazed if you were not feeling fatigued and breathless with a hemoglobin level in the 9s. When mine were that low I passed out and broke a rib - passed out two other times in public as well. It's a great way to make sure people at a party remember that you were there when you leave in an ambulance! LOL!
Several people have posted that one of the medications for ADHD or Provigil have proven helpful for CLL fatigue. I don't know how much difference it would make if very low hemoglobin is the issue, but do know that if you have cardiac issues of any kind you need to discuss using either with your doctor. My cardiologist said NO! No discussion.
My D and B12 were both low, and getting them into a healthy range, again working with my doctor, seems to have helped some with fatigue.
Pat
Fatigue is something I've been suffering from for the past few months but in the past two or three weeks something has changed for the worse. Driving to work, it suddenly hits me, driving home, it hits me. Now at work, and every day like this, I start to fall asleep at the computer. I get up frequently trying to stay awake but it just comes over me. My vitamin D and B-12 levels are much better than a few months ago but feeling drained has gotten worse. My GP finally admitted that it could be due to the CLL since everything else checks out. I'll be seeing my oncologist soon.
I've been fatigued for years and have always taken naps on the weekends. Diagnosed with Type 2 Diabetes a year ago and CLL this past July. Still employed full time (sit all day in front of a computer and only move my fingers) and I've been walking 15 minutes in the morning and 15 minutes in the afternoon and feel more energetic. I'm sure the exercise is helping my Diabetes (my A1cs have been in low 6's) and I guess are helping with my CLL. It is so confusing when the side effect of my CLL, Diabetes, high blood pressure medication and Metformin for my Diabetes is fatigue. I'm looking forward to retiring next year (will be 65) so that I can move more.
I was diagnosed with CLL in March 2013, I lived my life up untill to date doing everything I had normally done.
My life now however is blighted with horrendous fatigue, I feel a quarter of the woman I used to be.
I am struggling with everyday living and now I have come to the point in that I have no quality of life, I feel like I can't take anymore.
The doctors cannot find any explanation for my fatigue and so I am left which seems like a pointless existence.
Sorry for seeming so negative but can anyone please advise, I am so desperate.
Hi Jan,
Sorry to hear how badly you have been affected by fatigue, but there is hope! Please note that you are likely to get more responses if you post a specific question rather than replying to a poll, both because it will be seen by many more members and also because you'll be able to post just to this community (we can't block poll replies off from Google and other search engines) so you'll gain more personal replies.
When you do that, providing a bit more background will also help gain you more helpful replies. Of relevance is whether you've been treated and if so when at what with, what tests you've had done through your doctor to rule out causes other than CLL and whether you've had any long term illnesses (likely due to your CLL weakened immune system).
I too had terrible fatigue shortly after diagnosis and that was considerably due to the all the infections I was getting. Finding ways to reduce the frequency of infections, gradually increasing my wiped out fitness from the CLL/infections and bringing my vitamin D level back into the normal range really helped me, but it took several years and I've never recovered to my previous level of health. At least I'm not wiped out for several days if I overdo it just one day. Other community members have also found exercise (start off gradually) and vitamin D helped.
Extreme fatigue is one trigger for starting treatment, but it is rather uncommon. It doesn't help that CLL specialists don't understand why CLL can cause such terrible fatigue for many of us, but at least they will acknowledge it, which is more than the response you'll get from most doctors and even some specialists not particularly experienced in CLL. Your doctor can still prove helpful in working with you to eliminate causes other than CLL for your fatigue and it is important to do that.
Just knowing that you are not alone from the results of this poll + replies along with all these previous discussions will hopefully encourage you that life doesn't have to be this bad!
healthunlocked.com/search/c...
Neil
I'm so sorry you are feeling so bad at the moment jan1780, I have never been that low, being a bottle half full person. However persistent fatigue is going to drain you dry if you let it. I will tell what helps me, in the hope that it may give you more of a will to carry on. I often wake feeling pretty awful. I immediatle take a cup of water, lay back down and deep breathe until I feel relaxed, sometimes for 10 minutes others 20 or so. I then 'Twinge the hinges' and very slowly move each of my joints and muscle groups, very slowly, and as little or as much as I want. I started with 2 minutes a morning three years ago when first diagnosed, and am now doing reglular 30 minutes a morning which I enjoy immensely, I think the trick is to find your own level. The combination of the deep breathing and the slow movements is so easy and relaxing. If you do nothing else jan, try this consistently for a few days, if you don't feel a difference stop it, and try something else. I do appreciate that we are all different, and what works for me, may not do so for you. But it seems to me that you have nothing to lose, as you sound pretty low, with a feeling of helplessness perhaps. It's always wise to consult your GP before starting any form of excercise, but if he gives the go ahead please try it, and stick with it for a few days at least before you feel it's not working. If you like it, and wish to porogress, a little gentle walking, or light slow jogging may be your next step. I now am able to jog lightly in place for 20 minutes every morning after my bed excercises, whilst listening to my favourite music. followed by a hot, then cold shower. After which I feel absolutely high, it's like the effect of a drug to me, it really is. The down side to all this is that after about 4 hours the effect wears off and the usual fatigue sets in. But all in all, I do feel an overall benefit. I hope this helps in some way, do not feel you have to do it all, but do something, whilst long slow deep breathing, and there is a good chance that you will feel a bit better. Also talk to someone, anyone you can relate to, please do not suffer in silence. I have jusat realised that this is the longest post I have ever written. All the very best to you jan, and please let me know how you get on.
I am in Stage 0 of CLL having been diagnosed 7 years ago. I visited my consultant recently and due to my extreme fatigue where some days I do not know how I am going to get through the day, I go to bed early most nights and rest up on the weekends to try and manage the busy week ahead in work. My Consultant has recommended that I start Chemo treatment in the next few weeks - in the hope that it will improve my quality of life.
After reading some of the responses below, I would like to say I am fortunate to have a GP who has chronic lymphoma so he understands many of my symptoms.
I am fatigued if I over do it. I feel like I need 9-10 hours of sleep at night and if I don't get that much, I get tired easily. I am retired so I can do as much or as little as I wish while at home. I sub teach occasionally so those days can tire me out. I do take some vitamins , especially D3, to boost my immune system. I do not get sick easily except in the fall of the year when farmers are harvesting corn and soybeans and create lots of mold and mildew in the air. I get respiratory issues so end up on prednisone and sometimes an antibiotic.
