Hi, I have recently been diagnosed with a low grade B cell non Hodgkin’s lymphoma and I’m on watch and wait. I am struggling with fatigue which seems to be getting worse, I’m trying to stay active but I’m experiencing muscle weakness and I’m finding it harder to do the things I usually do. Does anyone else have any experience with how to help this or is it something I have to get used to?
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Hi @Adman a great big welcome to our forum.
I have a different blood cancer, but many of us live with managing fatigue on here.
When I was first diagnosed I could hardly walk any distance, but I have built it up over the last 19yrs since my diagnosis, I can now easily walk 10 mls a day.
My muscles tone is better than it has ever been. I am now 73 yrs old.
My diagnosis has given me the opportunity to look at my life and what I want from it and with whom.
I have learnt to say ‘No’
Over the years I have got to know my fatigue.
Since diagnosis I do not deal with stress well and it can bring on my fatigue and suddenly it is all too much.
My fatigue can be brought on if I overdo it emotionally, medically, psychologically, physically or practically.
It can come on immediately or up to 48 hrs after the event.
Sometimes I need to rest or have a nap, other times I need fresh air and appropriate exercise.
I attach a section on fatigue from the Blood Cancer UK website.
Blood cancer and fatigue | Blood Cancer UK
Give yourself time as you have only recently been diagnosed, I was in shock for ages
Look after and be very kind to yourself and please do keep posting.
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Hi Adman,
Thank you for posting and sorry to hear about uour diagnosis. I was diagnosed with F-Non-Hodgkin lymphoma (NHL) in 2016 at 50 and went straight into treatment. Having achieved very good partial remission, I’m now on active monitoring.
I suggest that you take a look at Lymphoma Action website as they have very good advice on dealing with fatigue specifically for lymphoma patients.
I try to exercise by running, walking and doing strength-based exercises such as squats. Today I am very tired, so I am resting as I am getting over an infection. Tomorrow I will probably feel OK because I have rested today. I try to listen to your body and on days I’m feeling good then use them to exercise. It’s the best medicine.
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Hi @Adman
I am sorry to hear that you are so affected by fatigue. I think this is the symptom which affects us the most, it is so often commented on.
It is not to say that it always stays the same. A lot of us have found that we can build our energy levels back up.
If you had flu it might take you two weeks to really bounce back to full strength. I found that it took me about six months and then any virus would be a set back for maybe a few weeks.
There is no magic formula but I think a few things can help. Do not get overtired. Rather learn to rest and then resume later. Find time each day for a proper feet up kind of rest, even a mini nap. Do not fret, if you can help it, worrying about something you cannot easily change uses up precious energy. Have faith that things will get better. I am lucky in being a fairly calm person it is so helpful if you can develop a chilled you who can say “No” to activities which will deplete you. “I would love to but at the moment I cannot”. If your tiredness gets worse speak to your specialist but first try to reduce your activities until you are deeply rested.
I sincerely hope you pick up soon and get some of your energy back. Thinking of you.
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This is really helpful, thank you @purdy1966. Sorry to read about your diagnosis, but glad to hear you achieved partial remission.
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Thank you for sharing these words of wisdom, @GrandmaJo, I’m trying to learn how not to overdo it as my fatigue is no joke. Definitely noticed that fretting leads to bonus fatigue. I love your suggestion to “rest and resume” and will make that my fatigue mantra whilst practicing putting stuff down and going back to it later. Thanks again!
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‘Bonus fatigue’ is a great way to put it. You definitely get more fatigue from not just letting yourself be tired, sleeping a bit more, letting your body recover. It’s almost about forgiving yourself, accepting none of this is your fault, and that resting isn’t some admission of defeat.
I got brutally tired during treatment but it had an unexpected positive result. While lying energy-less for hours on the sofa, I tasked myself with watching old, classic films I’d never seen before. Sunset Boulevard, The Third Man, even Citizen Kane, I’m not sure if have seen any of them if I’d not got sick. Not saying I’m glad about, but it was a silver lining to being knackered all the time!
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Ha thanks @Cid, nice to find folks who can empathise with all this! Know what you mean about trying to accept that this is all beyond our control and not to feel it’s a personal failing. It’s a pity society has conditioned us to feel like these terrible disorders are our fault, but this forum definitely doesn’t.
Love that you’ve been watching all those amazing classics. Recently I’ve been on a bit of a catch-up of TV shows that I never quite got around to, like Better Call Saul and Warrior, oh and Deep Space Nine. I love doing double-bills of favourite films too, like the Blade Runners or Terminator 2 + Aliens, stuff like that. Oh and my best recent knackered recuperation luxury was an empty matinee screening of Oppenheimer in 70 mm when I had most energy to concentrate! It’s good to keep finding a positive even during the knackering parts of all this, I say!
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Hey there @Adman, I’m so sorry to hear about your diagnosis. I was recently diagnosed with a different disorder, polycythaemia vera, but unfortunately I already know fatigue very well.
After asking my haematologist and nurses for tips about dealing with my fatigue and receiving nothing too helpful I found some great information that summarised current treatments for cancer-related fatigue (CRF) research: Cancer-Related Fatigue: Causes and Current Treatment Options - PMC
It basically finds that, “[c]urrent levels of evidence for the treatment of CRF show, at most, moderate effects. Of the interventions available for CRF, exercise-based interventions are the most promising and are recommended as first-line treatment for CRF.”
So having frequent exercise, whatever is manageable, is beneficial to increasing energy levels, however counterintuitive that may seem. The type of exercise, for example aerobic or strength/resistance, doesn’t seem to matter, but group work has stronger benefits. Yoga, tai chi, and qigong are also beneficial.
Bright light therapy where you get at least 8 minutes of bright morning light directly into your eyes can also help energy, perhaps as it regulates the circadian rhythm which regulates our sleep patterns.
Anecdotally, since I originally read the above findings I’ve been trying to follow them. I go out for a walk every day—not quite my big hikes in remote places like I loved doing in the pre-Polycythaemia vera (PV) times, but most days I walk about 2 miles and it does sort of shift me out of my fatigue. Taking the dog out first thing in the morning and letting him schnaffle about for at least 8 minutes gets my dose of daylight, and my sleep has actually improved! I’m a lifelong insomniac so this is such a treat. As for yoga, I’ve been doing some Apple TV Fitness app yoga sessions and they’re great! They’re a short as 10 minutes and taught for all kinds of bodies and flexibilities and very inclusive. I can currently feel a whole new ache in my side from stretching about in yoga yesterday, taking my mind off the fatigue for once 
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Dealing with fatigue is something I struggle with. There’s many things that I need to do but haven’t got the motivation nor energy.
My garden, or rather my jungle, is screaming for attention but I can’t get enough enthusiasm to tackle it. I’m sure my neighbours must think I’m a terrible gardener.
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Well I started to make a dent in the jungle of weeds, I’m afraid I lasted only 10 minutes before I was overpowered by fatigue. I suppose it’s better than nothing.
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Oh @MikeW I am impressed as that first step is the hardest.
10 minutes is great.
Small baby steps and is so much better than me that would have gone and overdone it and really gone backwards.
You will be fine and really get to know yourself
I cut and paste part of a post of mine above:
When I was first diagnosed I could hardly walk any distance, but I have built it up over the last 19yrs since my diagnosis, I can now easily walk 10 mls a day.
My muscles tone is better than it has ever been. I am now 73 yrs old.
My diagnosis has given me the opportunity to look at my life and what I want from it and with whom.
I have learnt to say ‘No’
Over the years I have got to know my fatigue.
Since diagnosis I do not deal with stress well and it can bring on my fatigue and suddenly it is all too much.
My fatigue can be brought on if I overdo it emotionally, medically, psychologically, physically or practically.
It can come on immediately or up to 48 hrs after the event.
Sometimes I need to rest or have a nap, other times I need fresh air and appropriate exercise.
I attach a section on fatigue from the Blood Cancer UK website.
Blood cancer and fatigue | Blood Cancer UK
Celebrate the little achievements, look after and be very kind to yourself.
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@Erica you always come up with positive thoughts, I thank you for that.
I’m sure there are many others in this forum that have other ailments along with blood cancer. In my case I also have asthma and type 2 diabetes, both of which are under control. Today’s sojourn into my jungle did trigger a bit of asthma but quickly subsided after a few puffs of inhaler. Like you said, baby steps before going on a marathon.
I’m really impressed that after 19yrs you are as fit as you are.
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