Diagnosed CLL October 2017. On watch and wait. Since last wednesday I have found it increasingly difficult to walk.
Today I booked a call with GP. He said it was CLL fatigue and sent me a link to leukeamia.org.uk about how to handle it.
This evening, I can barely stand. Every muscle is shaking. Probably not fatigue, or is it?
Anyone experienced anything similar? Any ideas gratefully received.
In my 16 years of reading CLL patient posts and medical literature, I have never come across what your GP has determined to be 'fatigue', given your description.
I think it may be worth investigating further, and perhaps be examined by a doctor. Telephone diagnosis seems to be sub-optimal in this situation.
Good luck navigating the system.
What you describe doesn't sound like fatigue where you can walk if you want to but feel too exhausted. Your symptoms sound more musculoskeletal or neurological and you should be seen by your doctor as soon as you can. Jackie
I would be inclined to try either A&E at a decent hospital, or an out of hours service if there is one. It doesn't sound like typical fatigue. Although if our of hours is only from 6.00pm I wouldn't wait until then.
Good luck, I hope you can be seen quickly.
Liz in UK
Has your GP done bloods for this symptom?
If not, yr GP should. IMO. And include ESR or Plasma Viscosity. Fbc too.
And ask your GP about PMR. Polymyalgia Rheumatica. Not an infrequent cause of fatigue, muscle weakness etc over age of 60ish. GPs know about this I discovered!
I knew someone with similar symptoms who had that. Treatable!
Our GPs must be invited to consider other diagnoses and resist blaming CLL for all. As indeed we as patients must! Bit of a mantra of mine I know.
Jig
I was expecting to referred for bloods but doc said bloods in August were fine so they should be fine now... Hmmm!
Hmmm indeed. Aug bloods are effectively 6 mths ago. Only you can decide, and returning is an option. Jig
Will definately ask nurse for bloods. Hey. I spelt defiately correctly, I think?
How is your haemoglobin? My father was like that when with severely low haemoglobin and CRP through the roof
Sounds like polymyalgic rheumatics (pmr)30 mg of prednisone stopped it within 8 hours (for me), then tapered down to 4mg, which I can’t get below after 2+years.
Pmr started 3 months after I started Ibrutinib (for CLL). Changed to Venetoclax 7 months ago and I am now off all medications.
Good Luck. The PMR was really painful for me.
Ted
Thank you everyone for your very helpful posts. From your answers it seems the GP did a perfectly good job for a GP who doesn't know a lot about CLL like you lot do!
I shall contact my assigned CLL nurse tomorrow now that I know that this not 'normal' fatigue. She knows a lot more than GPs I hope.
Once again, thank you all, you wonderful lot.
Does not sound like CLL fatigue. Although, of course it could be. Phone and Video appointments are great. But sometimes, even during times of covid, I like to actually be examined by my MD. Something to consider? Could also consider another call to your MD and, make sure your MD understands the symptoms that you are describing.
I have the same thing. It's from not being active. I bought an exercise bike. Once i have the energy to get on it and try to do it everyday the dizziness goes away.
This happened very suddenly. Last Wednesday morning I was fine. By 5 o/c I was hanging on to things to walk. I like the idea of an exercise bike. Keep cycling!
Aged 37 - New CLL diagnosis - any advice on tiredness and exercise appreciated 
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