I am having MAJOR issues with Fatigue and being healthy (scratches/sinus infections etc. all take 2-3 times as long to heal/feel better)

I was diagnosed ~14 months ago; watch & wait still. WBC progressively getting higher; RBC slowly getting lower. I am at my lowest point. Nothing heals, I cut my foot on a fence in late Nov., was put on antibiotics for it- that still hasn't healed (now 2 full months), paper cuts even with neosporin don't heal quickly anymore etc. Then now around Christmas Eve I get an upper resp. infection & am on my 2nd round of antibiotics, halfway through again and still don't feel better. But the main thing is the fatigue- if I allow myself I can literally sleep pretty much off and on all day. I have to FORCE myself to stay awake. No matter what vitamins I take, no matter what I do. I teach 3rd grade & used to love it but now I just can't wait every day (as in count the hours) to get home for my nap. I sleep about 9 hours at night then come home sleep another 2-3 hours, then force myself to get up and do some work, often in the morning/evening I will still fall asleep on the couch. This doesn't seem like my "quality of life" is very good...Any advice/opinions? Thanks in advance.

22 Replies

oldestnewest
  • Hi you are facing the problem for many W & W patients. They may not need teatment clinically (and certainly chemo may not necessarily make you feel better) but boy do they need something. I think the lack of wellness is a big factor in CLL. I know the new novel agents hold out more hope but have no long term record. I wish I had some answers but I do not think even the experts have those. Best wishes and good luck.

  • CLL related fatigue forced me onto disability after a long legal fight... at age 54. Nobody fully understands CLL related fatigue but I subscribe to the view that it is not fatigue, but a continuous feeling of being sick... caused by cytokine released by good B lymphocytes...this idea was suggested to me by Dr. Michael Keating.

    So for 14 years until treatment, I was 'stuck on sick' ... not fatigued. A messed up immune response it you prefer...

    Interestingly, as my CLL progressed the feeling began to wain... I also found that adopting a low glycemic index diet and twice daily brisk walks helped reduce weight, improved stamina and alleviated the need for an afternoon nap...

    After treatment, this totally lifted and I felt 20 years younger... so far it has not returned.

    I'm thankful that from this, I have been released...

    Ultimately we are all different... however we all have a compromised immune system.

    ~chris

  • Thank you, I know I should try walking...I just HATE walking (& due to a poorly healed broken foot it's not easy either). As a teacher, my regular dr. has NEVER been happy with my career decision due to my always being sick (of course it turns out I have most likely had CLL for 6+ years before being diagnosed). But with the CLL she is overly cautious about germs but the Oncologists don't seem to be...If I could just know that at the end of this year I could be done, it would help...As I sit hear coughing with my chest hurting going on a full month of this latest illness...How did you finally get on disability? I know it's different for everyone, and especially for people in the "real" world....

  • I'm in Canada so disability is probably different... you need to apply and PROVE that your problems are CLL related. As I found this is extremely hard to do in 3 levels of tribunals...

  • Just a few thoughts concerning your fatigue and illnesses:

    1) Constantly fighting illnesses will definitely worsen your fatigue levels; you need to find out what can be done to reduce the frequency and duration of your illnesses.

    2) Rather than contrasting the opinions of your doctor and oncologists on what degree of caution you should take with germs, ask them why they are of that opinion. As Chris said, "we all have a compromised immune system" because our B-lymphocytes don't work and also cripple other parts of our immune system. Blood tests to measure your Absolute Neutrophil Count and Immunoglobulin levels will give some guidance here. If your Immunoglobulin G (IgG) is low enough and your run of frequent infections continues, you may benefit from IVIG infusions which could mean you can continue teaching. You might find that your quality of life will improve if you can teach an older class, where the children are better at managing their hygiene and are also less often ill, or perhaps you may need to move into a role that involves less contact with young children, but explore other options first.

    3) With CLL, you are better off seeing a haematologist that specialises in blood cancers, rather than an oncologist that specialises in solid tumours. What experience do your oncologists have with CLL? Could this be why they are less concerned about infection risk than your doctor, or is it because your doctor is more familiar with your history and isn't communicating this to your oncologists?

    4) Many on this site have found exercise has helped reduce their fatigue levels and improved their quality of life. If walking is a challenge, look into alternatives that don't involve weight bearing on your foot. You might find rowing, cycling or swimming (provided infection risk isn't an issue) are better alternatives. I'd recommend consulting a physiotherapist or maybe someone with suitable training at a local gym? They may also be able to help you improve your foot mobility. Face it, you aren't going to stick at walking if you HATE it.

    You've made a start towards improving your quality of life in raising your issues here - I wish you well with the rest of your journey.

    Let us know you go,

    Neil

  • Thank you, I am seeing someone at UCSD a couple times a year also who specializes in CLL. My regular Dr. has always been overly concerned about my health and has never approved of my teaching---long before I was diagnosed she wanted me to quit. Now that I have CLL she is overly concerned.

    I have a GREAT water aerobics teacher who teachers during the day and I should have gone during the summer but never got motivated to go. To be honest, the watch/wait and traveling to San Diego and trying to deal with everything really had (has) me really down but this water teacher she really helped me a lot over the years...

    As for changing grades- there's no chance of that. I should be honest- I am also burnt out. I have a lot of stress at work too, there are tons of changes coming that I don't agree with (most people don't) and I am well liked by parents and students but not administration.

    I've been teaching 15 years and I've tried other levels, at this point in my career I can't even get a transfer without losing a lot of pay/seniority. The funny thing is my students aren't sick & honestly my school isn't either. Many schools in my state have been so I'm not sure how come we are lucky to be spared but my custodian is GREAT about cleaning their desks daily and I give my students individual packs of tissues so I think that helps too. It just happened over winter break, a few of us got together for lunch and all 3 of us got really sick!

    I'm not sure what my IgG level is right now- no one seems to be too concerned because even though my WBC etc get worse each time it hasn't doubled in the year so they say I am okay. When I complain I have extreme fatigue they act like it's to be expected and that it's no big deal. I go again in April so I'll be curious to see what the Dr. says because it will be a full year since I saw him for the 1st time.

    In the meantime, I think I will try to motivate myself to go over to the gym soon and swim or get my bike out while we still have "spring" weather....

  • OK, so what you are saying is that while you are burnt out, you don't want to make any changes and for good reasons. Improving your health should help you to get back that enjoyment you once had teaching.

    It's the doubling time of your Absolute Lymphocyte Count (ALC) that you should track; your WBC includes all white blood cells including neutrophils and lymphocytes. You need to find out if your ANC is at an acceptable level to help you ward off infections. It could be that your CLL isn't showing up that much in your peripheral blood but is impacting your marrow's ability to make other blood cells like your neutrophils and red blood cells. Just prior to diagnosis, my ANC was 0.4, putting me at severe risk of infection, but my ALC was 2.8 - a healthy range, other than for the fact that they were B-cell clones, so I actually had SLL, which had infiltrated my bone marrow and spleen and caused my immunity to crash.

    Also your haemoglobin level is a more accurate indicator of your body's ability to transport oxygen than your RBC (provided of course that your RBC isn't too much below normal levels) and hence a better indication of whether this is (partly) responsible for your fatigue. (But note that having CLL can result in fatigue issues even with acceptable RBC and haemoglobin levels.)

    With respect to motivation, the hardest step is the first; you need to get into a regular habit if you are going to gain any benefit.

    Neil

  • My roommate is good about tracking the other #'s. I will have to ask her about my ALC & ANC. I have no Spleen- I haven't had one since 1993 when I had Mono. They never found out why but it kept growing and growing, unfort. I never got a copy of the biopsy and now no one has a copy.

    My RBC is SLIGHTLY below normal (this just started in Nov., 2012). I am not willing to change the way I teach anymore, not when my students learn, and improve. I work too hard to make sure of that. The parents are happy, the students are happy and I was happy teaching. I always tell my "non-teaching" friends if I could go back to teaching when I could shut the door and teach I would be ecstatic but that's never going to happen anymore :(

    Yes, as for motivation I agree and like I said we are having unseasonably weather (we are not having winter for some reason) so since I can't do the water aerobics class and I do have a good bike I am going to start motivating myself to get back on my bike.

    I just need need a way to stay awake, do you really think bike riding will help? Since being diagnosed, I already take more vitamins, eat more vegetables etc.

  • Provided there's no chance of a strong headwind, bike riding has a lot going for it if you don't have much energy. You can easily vary your exercise level from gentle to as hard as you like and you can rest whenever you like by just coasting for a while, or stopping while still remaining seated. For the ultimate in having a resting position when stopped, you could get a recumbent!! :)

    You also get to see more of the environment than you do walking. as you can get much further afield for the same amount of expenditure. If you do decide to opt for cycling as your major means of rebuilding your fitness and thereby hopefully lessening your fatigue levels but are worried about running out of puff, you could look into getting a motor assist added to your bike. There's electric and petrol options available.

    When I've been most fatigued from CLL and associated illnesses, I found the hardest part about cycling was pumping up the tyres - and even that can be overcome by borrowing someone else's muscles or getting an electric pump.

    Given you have a good bike and are obviously experienced at riding it, what's stopping you?

  • Bike riding sure works for me..

    One of the best things is that it is so much easier on the knees..

    Pounding the pavements while jogging I found very hard on my knees.

    Swimming is also good exercise with no sudden impacts on the joints.

    Dick

  • From another (retired) teacher--I understand totally how you feel about your teaching. You are the educator; you know what works, but now idiots are in charge...and it's exhausting just to even know about the idiocracy.

    Is there any reason you cannot take Ritalin (methylphenid) for fatigue? I've been taking it twice daily since i retired (not knowing that i already had CLL)

    and it helps quite a bit. In your case, you probably would need it thrice daily, as someone elsewhere remarked. It help with the draggy fatigue and the sleepiness. I'd try that first to see if it helps and that might give you a bit of a "lift" to get some exercise.

    Best Regards

  • No one has ever suggested that- I'll have to bring that up...thank you. I came home from my first day today & slept for 3 hours & woke up and didn't want to get out of bed! I'm not sure which dr. to ask but I'll think about it and ask one of them!

  • Hi rlyndecker

    In relation to exercise .... I am basically housebound ( not through CLL ) so I have to discount the walks/bike riding etc as a way of exercise ... and with you having a hectic time as a teacher with major fatigue, may have to build up a exercise routine to suit your lifestyle.

    I would suggest that you start your routine by exercising at home, get yourself a kitbag fill it with exercise bits and bobs, keep it in the living room and do little 5- 10 mins of exercise at a time.

    The bonus being that you can do it watching TV... sitting/standing ... stop/start as the fatigue dictates... and can build it up without getting ' fed up '

    The ygtgo kitbag has .... a Powerspin - Resistance Bands Set - Exercise Bands - hand grips - power twister spring bar - Easy Shaper Set - JML spin gym etc....

    I used to use exercise bikes/rowing machine/steppers etc ... but now find that impossible due to chronic pain, so I now have a ...Rockin' Abs ... that basically allows me to lie on my back and with the use of wrist weights and spring bar, exercise without activating any pain ... the bonus being that more than once, family members have found me fast asleep, wrist weights and all .....

    My exercise routine is stretching, compressing my muscles which can be done at any time ....

    ps

    Mrs ygtgo says that you can have an exercise planner and routine for only $55 .. ( this offer in not available in the shops ) ....... good luck

  • Hi rlyndecker,

    The regular readers here and on other CLL sites know that any mention of fatigue and unusual childhood diseases gets a post from me, so here it is again.

    "Don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue."

    We have CLL a cancer of the immune system, it allows many diseases to affect us that don't bother most people, but our hard working, intelligent doctors often forget those potential complications. See Dr. Terry Hamblin’s blog on fatigue: mutated-unmuated.blogspot.c...

    Both times my CLL progressed I got severe fatigue and a reactivation childhood diseases that added to my symptoms. In 2010 before treatment we tested for Iron and D3 and found I was extremely low in both, so supplements helped relieve some of the symptoms. Others in our discussion groups have found Vitamin B 12 to help. I also had Whooping Cough (Pertussis) I was treated in 2010 with Rituxan monotherapy and the fatigue problems disappeared but the cough took months for the symptoms to slowly subside.

    In 2012 I had leg cramps and fatigue that primarily occurred when I tried to drive a car, I could walk OK but not drive. A reactivation of HHV-6 was diagnosed along with progressing CLL. Treatment with Valganciclovir (Valcyte not Valtrex) in October relieved the cramps, reduced the fatigue and lowered my ALC, starting Idelalisib in December fixed me entirely.

    So is it CLL and an opportunistic infection?

    Suggest you get tested for all the HHV viruses like CMV, EBV, etc. i.e.: the entire list of HHV 1 to 8. HHV-4 is EBV also known as mononucleosis, notorious for fatigue.

    Most Docs ignore these since many adults have these as dormant, latent viruses controlled by the immune system- we immune-compromised patients see them reactivated. We know about Shingles from Chicken Pox (HHV-3) but the others are difficult to distinguish from CLL symptoms. So don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue.

    And as others have suggested get your Immunoglobulins tested and if needed, get IVIG infusions; many CLLers have had their frequent infections stopped by that expensive but effective step.

    Len

    Dr. Terry Hamblin’s blog on fatigue: mutated-unmuated.blogspot.c...

    .... Another possible cause for fatigue in patients with CLL is a chronic infection caused by the immunodeficiency. This might be a low grade bacterial infection; perhaps of the sinuses, or perhaps even TB. It could be the reactivation of a virus infection like EBV or CMV.

    I am sure readers will see the therapeutic conundrum here. If the fatigue is caused by cytokine secretion from the tumor, then chemotherapy will make it better. If, on the other hand, it is caused by chronic infection, chemotherapy will make the immunodeficiency worse and the infection will progress.

    I am absolutely convinced that CLL patients get fatigue as a symptom. Trying to find out why is very difficult. Jumping into treatment may not be the correct path to follow. More research into this difficult problem is clearly needed. If a trial of therapy is to be undertaken in a patient with low bulk disease, then I favor a trial of green tea extract. This will likely cause no harm, and it seems that some patients respond. Next in line would be rituximab alone.

  • Thank you to all of your replies. I am going to start bike riding and hopefully that will help me with staying awake during school hours! Before I broke my foot I was so good about it, then once I broke my foot I became a chicken about bike riding...But I am a wuss when it comes to pain...

    I don't think I can get Mono again as I have already had it but I did mention that to the Dr. last time I went because this is EXACTLY what it felt like sleeping all the time...

    I do have 2 underlying "illnesses" that don't help the CLL- Sleep Apnea and Asthma. Right now neither is "under control". I am feeling a lot better though & as soon as I can feel like I can walk from one room to another with everyone hearing my breathing I am going to take the bike out. I don't have to worry about pumping the tires or anything- if it comes to that I have a GREAT friend who'll do it for me :)

    I will definitely read those blogs Len recommended- thank you.

  • rlyndecker wrote: "I don't think I can get Mono again as I have already had it but I did mention that to the Dr. last time I went because this is EXACTLY what it felt like sleeping all the time..."

    My dear rlyndecker, I'm sorry your missed the point of my long posting.

    Unfortunately we all with CLL must adjust to a new "normal" reality. CLL has likely wrecked your immune system. The memory "B" cells that kept your EBV virus under control are probably gone or ineffective.

    Since you describe the symptoms of EBV so accurately, you must remind/insist that your doctor test you for EBV reactivation and other infections that everyone else has immunity to. Diagnosing a reactivated virus is not trivial, and may take some careful investigation by your doctor.

    If he/she has questions encourage them to contact Dr. Furman at Weill Cornell NY Presbyterian, New York, NY. If your doctor refuses, it may be time to find a new doctor (I had a CLL expert at Stanford that rejected the need to test, and I changed to Dr. Furman as a result).

    Len

  • Actually EBV, may live in memory B cells... safe from the immune system, they may in fact be able to hijack young B cells and convert them to memory B cells for their 'safe houses' ... interesting theories ... genom.mefst.hr/postdipl_BN/...

  • I'm going to have to bring this up at my next appointment, thank you all. Now if I can just figure out a way to survive teaching (I'm going to take the bike out) I'd be better! You guys are great!

  • hi. the fatigue is a real problem with me all so . Jobs I used to stroll though I now pay to have done. small things like cutting lawns, painting. I keep telling myself this will improve but deep down Im not so sure.Hope things improve for you soon

  • Hi I am on w&w diagnosed march 13 . The doctor discovered my Iron levels low so put me on iron supplements to help with fatigue. Hope this helps you take care

  • HI rlyndecker

    Reading through your post and replies, thought I'd ask how you are getting on, and whether any actions you have taken have helped.

    Best wishes

    Bubnjay

  • Short update- I tried walking a bit but it didn't help (it didn't not help) I posted about my bizarre (sp.?) latest blood work that I am waiting to hear from the Dr. about. I'm not going back to the dr. until the summer because I just can't afford to go right now. I have emailed him numerous times but he thinks it's no big deal. Another Dr. thinks I am not being convincing enough so I need to find a way to be more convincing. I ended up getting off antibiotics finally for my cut foot. Found out it's most likely not healed correctly and will be permanently scarred. I continue to bruise easily etc. Then the end of Feb. I ended up with a sinus infection! Right now I think I am getting another one but am going to try drinking tons of water this weekend and doing a nasal rinse in hopes of getting rid of it before I go back to work Monday (we had Spring break this week). Thank you again for all your suggestions, I have brought it up to the Dr. so hopefully when I visit him in June, we can have a good talk!

You may also like...