Hello,
I was diagnosed with CLL 3 months ago, currently on watch and wait.
I also have moderate/severe chronic fatigue syndrome and feel I am getting worse, I have read exercise is good for CLL but unfortunately the worst thing for CFS 🤷♀️
I was wondering if anyone else had both these chronic diseases and what their experience is please?
Many thanks and healing to all
Hi tinglyfingers,
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Fatigue is one of the most common side effects of having CLL, and usually very challenging to diagnose and treat. I hope you can get some good guidance from your medical team.
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You can find some previous discussions by looking for the box on this page labeled:
Related Posts
*ME/CFS or CLL Fatigue healthunlocked.com/cllsuppo...
*CLL and CFS healthunlocked.com/cllsuppo...
*Rituximab Fails to Improve Symptoms in ME/CFS healthunlocked.com/cllsuppo...
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And this link will take you to the 27 previous times CFS was mentioned in past postings:
healthunlocked.com/cllsuppo...
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Len
Thank you for taking the time to reply Len, that’s what worries me, a double whammy of fatigue. I have had CFS for about 25 years and pretty much bed bound. I’ll check out the links, just learning to navigate this site 😊
I hope this article is helpful
versusarthritis.org/news/20...
I have PICS - which manifests similar to CFS - I exercised within my limits
Thank you 👍
Hi, suffering from both and CIU my fatigue is beyond debilitating. ( CIU and fatigue since 2008, CLL and increased CFS since 2017 ).
Unfortunately I have yet to find any answers - moderate exercise is important so I work on the basis of doing only what I what I need to do, maybe choosing something I want to do - mainly small things and then resting…
My case is a little different to yours because of my overactive immune system (CIU). My body is always fighting something even down to reacting to my own Adrenalin, etc. I do seem to have a lot going on 🙈
So for me, it’s the resting period that matters after any little exertion… it doesn’t ever make me feel less tired but it lets my body rest and repair.
I am always tired and lead a quiet a life as possible. Luckily both my husband and I are content people, we live in the countryside, enjoy the nature and each other’s company, I don’t really have high expectations from myself anymore and that’s my coping mechanism.
Some days I feel really old (54), frustrated and that life feels like it’s passing me by, I have anxiety on top of that so all in all it’s a constant juggle trying to find some semblance of balance within and in my life.
At the end of the day, most of it is out of my control and I try to accept this and be the best I can be when I am able.
❤️
Hello,
Thank you for replying. I am so sorry you are suffering too 😞
My CFS was debilitating enough before the CLL diagnosis but getting worse. I have had such a stressful year which hasn’t helped. I had to sell all my belongings and move from my home of 23 years, I have been sofa surfing for the past 5 months in 4 different places, I had to give up my beloved dog who was my biggest companion for 10.5 years. I’m absolutely heartbroken 😭 Hopefully moving into a ground floor studio flat soon where I can settle finally. I live alone and worried how I will cope as rarely able to go out and often unable to make food 🤷♀️ However, I’m trying to stay positive 😁
Take care 🙏
Yes I was unfortunate enough to not be granted reasonable adjustments at work and was dismissed. I didn’t have much time left at work as I was starting to struggle, I just wanted to work until I couldn’t. Consequently I had to sell up my home too, but hey, things have a way of working themselves out.
It’s just adjusting to the new you, which is a very weird feeling.
Good luck getting new accommodation and with all that worry gone you should see an improvement in your mindset.
As for meals, for winter get a crockpot. Buy in your meat and vegetables already prepped and chopped and bung it all in with a jar or packet …all done.
You’re right, things have a way of working out and definitely one pot meals and freeze are the way to go.
I had to give up my business too but turned 60 in July so as much as I loved it, not the end of the world.
Onwards snd upwards 😁
So sorry to hear you have multiple health issues impacting your energy. I also have CLL/SLL, fibromyalgia, chronic fatigue, arthritis and injuries that just never healed properly. I used to be a dynamo and not sure if living like that brought all this one but here I am! Fatigue and pain have greatly impacted my life and what I am able to do. I am limping toward disability but have been fighting it every step of the way. It might be time to accept it. I do exercise regularly, lost weight, cleaned up my diet, seen every specialist and diligently followed their advice. That is best for my health overall, but has not significantly improved either pain or fatigue. I do think you have to keep your body moving or things will be worse, but you know yourself best and have to stay within what you can do. This is not a push through the pain and fatigue and soon you will be a triathlete thing - create a gentle workout/stretches you can do consistently and stick to it. Wish I could tell you there is a magic cure - but I am 10-12 years into life changing fatigue and pain (and now CLL/SLL) and have not found one yet... All the best to you.
Thank you for your reply and so sorry you are dealing with so much ill health too. It’s a lot to cope with!
Exercising with CFS is not advised and it’s certainly not an option for me at this stage but as there is still so little known about it I think you can only listen to your body. The more I push the more PEM I get and longer I’m bed bound. Continually pacing and living in hope 😊
Well, I say pacing is exercise! 😄 Five days a week - I do some gentle stretches and work with elastic bands for strength in my arms and back (also that is part of physical therapy - attempting to recover from a fractured elbow). I do some hamstring stretches, and light weight (1-2lbs) elbow curls (for osteopenia and general strength and flexibility). And for aerobics, I march for 20 minutes while watching TV or listening to audio books. Just enough to keep my joins lubricated, muscles flexed, and heart pumping. It is not going to gain me entrance into any fitness contests, but it is what I can do with what I have. And frankly, probably more than many "healthy" people do on a consistent basis. You know yourself best. We just do what we can. Best to you.
Well done, sounds like you are doing the best you can in the situation - keep on marching 👍😊
I feel like we found our people here! My husband has CLL and ME/CFS (I hate the US name Chronic Fatigue Syndrome - sounds like how most physicians view it, as something in the mind and just simple tiredness). My husband had an active job and was the energizer bunny before CLL showed up in his blood work 10 years ago, at 47 years of age. No symptoms whatsoever at first. But within that first year fatigue really hit after he had one strong viral infection. After that, he was never the same. His WBC counts were always "good" so he did not need treatment - we went years bouncing between the oncologist saying "your fatigue isn't cancer, your counts are good" and primary doctors saying "your blood work is fine, its's cancer causing fatigue". They literally wrote notes to each other.
I finally stumbled upon ME/CFS in my own research and thought it fit him. At first he continued work full time, then came home, went to bed, and got up for work in the morning. Eventually he couldn't work, we had to move in with family, and he would have to lie down and sleep even after a trip to the store. I knew it wasn't depression as every primary doctor tried to tell us, and it wasn't just the CLL. The pain and mental fatigue are so debilitating. We finally got referred to a specialist 4 years ago after wrangling a diagnosis, though it was reluctant on doctor's part.
He now sees a infectious disease doctor who specializes is CFS as it struck his own son years ago. He's among the forefront of researchers, but after 4 years of visiting him I wish I could say there was something that helped consistently. He had hopes when long covid was getting attention, as he feels CFS is a post viral syndrome as well. But our last visit earlier this year he seemed as frustrated as ever.
He did undergo treatment for CLL in 2020-21 - started Calquence and had Gazyva infusions. His CLL genetic mutations had changed and worsened, though his WBC was never very high. Due to the complex karyotype, he qualified for treatment. I think the pretreatment steroid gave him energy, because for those 6 months he really did have more energy. And I do think he improved overall after that (prior to treatment he considered getting a motorized scooter, and now he can be active a day or two a week.)
As for joint pains, he did recently start getting steroid injections in his spine and knees. It has been a relief, taken the edge of pain away. But he didn't qualify as a CFS patient for that, but because of arthritis in the joints & spine. Pain is so tiring, I think that helped - he's not as mentally fatigued from that constant pain.
I really am touched to hear about you and all others with similar lives. I so wish I could offer something more than commiseration (on my husband's part - I'm just the caregiver). But you are not alone, and I appreciate your sharing and letting others do the same. I'd give you a big hug in person.
So sorry to hear your husband suffers too, personally I think the ME/CFS is much more debilitating than the cancer.
It is such a help hearing from other people with the same conditions, I find I learn so much more from others personal experiences than doctors, even though with ME/CFS symptoms are all very personal but you can relate to so much too as invariably there will be people with the same symptoms. When I first had a major crash, I thought I was dying 😊 but reading about others with the same symptoms and they were coping relieved so much anxiety for me.
Sadly as you say no answers yet but I think acceptance, trying to stay positive, strict pacing and being as healthy as possible is the best way of managing.
Sending hugs and positive vibes to you both too. You are very a very special person to stand by your husband as it’s not an easy illness for you to deal with either. 🙏🌸
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