ME/CFS or CLL Fatigue

[shornoff]

I have ME/CFS and CLL. My fatigue from ME (had Me many years before CLL) was always up and down and sometimes disappeared altogether.

Now my fatigue is constant. Every muscle seems weak. If I stand for 5 minutes I'm dizzy. I can walk 500 metres but it tires me. I can work in the garden for 30 minutes before I'm shattered and dizzy.

I have no night sweats or lumps.

Is this CLL or ME?

Tried asking my doctor 6 times in the last 6 months but I only get to talk to a nurse who asked how do you spell ME/CFS as she Googled it.

Are we downhearted? Absolutely not. I shall do weeding tomorrow and fall asleep to the Tour de France.

[EmilyLondon]

And are the two linked? As someone who also has both diagnoses, I do wonder.

If I have a long term dodgy immune system with lingering colds and infections, I am not surprised that I feel tired.

Look after yourself in this heat!

[shornoff in reply to EmilyLondon]

Thanks Emily and you too. London's a lot hotter than Bradford, 250 m up a Penine!

[LeoPa]

Could it be a combination of both?

[shornoff in reply to LeoPa]

It very much could. What I need to know is what does the fatigue associated with CLL look like?

[LeoPa in reply to shornoff]

I'd make a separate post with the title: WHAT DOES CLL FATIGUE FEEL LIKE? Youd get lots of answers giving members a chance to vent.

[shornoff in reply to LeoPa]

Thanks. That makes a lot of sense.

[SeymourB]

shornoff -

I'm inclined to think that one makes the other worse in complex ways.

CLL fatigue is explained each of them as having to do with cytokine imbalance. But we don't all get cytokine tests, even though they exist. I imagine the reason is that if a particular cytokine is observed to be too high or too low, the next question from the patient is, "What can you give me for it?" I know there are drugs targeting specific cytokines, but they usually get tested in otherwise immuno-normal people or in special disease cases.

The list of cytokines and their interactions with the immune system and other cells grows each year, it seems.

en.wikipedia.org/wiki/Cytokine

=seymour=

[shornoff in reply to SeymourB]

Thank you. Interesting.

[Pearlpink]

Hi. I was diagnosed, by coincidence, with both separately, a week apart! I’m pretty certain that those of us who get post exertional fatigue have a lot of crossover with ME, but I personally think it’s my Cll that causes it. Unknown to me at the time, my fatigue started at exactly the same time as my CLL, but it took a further 3 years of investigations to show I had CLL. After I was diagnosed, I looked back at all my blood results and my Fatigue had started at exactly the same time my lymphocytes went up, past the criteria for CLL.

I agree, I think we just don’t know enough about the fatigue that some people get with CLL, long covid, ME, and lupus etc. The ME consultant was convinced that the very bad infections I got recurrently before my CLL was properly diagnosed, triggered off ME type symptoms, but I think it will all turn out to be CLL led. . I also agree with the cytokine theory. I am one of those people with consistently high inflammatory factors. Crp around 50 for three years, ESR around 50. RDW raised. All of them were ignored, and were said to be reactive after pancreatitis.

However, as I have said before, fate has dealt me a good hand, being diagnosed just before covid.

I feel very optimistic that the amazing progress they has been made over last few years will crack what causes the profound disabling fatigue in some of us. The research into long covid, and the new agents like venetoclax in CLL will help us to crack it!

Fatigue associated with myelofibrosis, psoriasis, eczema is now seeming to improve as people have treatment with JAK inhibitors, which was not something they were quite expecting. One of the JAK inhibitors is amongst the treatments possible as combination therapy in Severe Covid. JaK inhibitors reduce how many cytokines are released in some of these inflammatory conditions and there are hundreds of other drugs in the pipeline.

I think the way cancer drugs are developing, where different drugs help different people, with different genetics, across different cancers will probably turn out to be the same for fatigue. All people with CLL seem to be different. I think it’s wonderful that so much of the research across diseases is now shared. Here’s hoping!

I have to start treatment soon with V&O so will let everyone know if it helps my fatigue.

[shornoff in reply to Pearlpink]

Thank you and keep us informed.

[mollyhm]

I believe this is ME?CFS. I have both as well. My doctor told me the fatigue is from ME?CFS.

[tinglyfingers]

I am moderate/severe ME/CFS, had it about 30 years but became pretty much bed bound 3 years ago. Diagnosed with CLL in June this year (2023) my consultant said fatigue is due to CFS but a lot of people get it with CLL so how can she know? All I know is I feel worse than I did but I am under a lot of stress with life stuff at the moment so that won’t help 🤷‍♀️