I was diagnosed with CLL in 2018. Specialist said it’s a very slow moving strand of leukaemia and I may not even have to have treatment for another 20-30 years.
Thing is I’m 37, last few months I’ve been getting really bad leg pains. It’s like a throbbing dense pain and only goes away with anti inflammatorys. The sweats are getting ridiculous, doesn’t help that it’s generally hot in Western Australia (not that I’m complaining!).
I do crossfit and train 5 times a week. I’ve been getting very short of breath 5 minutes into hard exercise, severe sweats and my heart rate is through the roof. Recently tho after a routine blood test my cholesterol came back very very high. With that I was sent to see a cardiologist. ECG came back fine but now I need an exercise stress test ecg and an echo ultrasound. They think I may have a heart condition.
Soooo, I have CLL but not sure if that would effect me during exercise or whether I do have a heart problem! I’m so confused and frustrated as generally I’m as fit as a fiddle but now I feel unfit and lethargic.
First a couple of questions: Have others in your family been diagnosed with any heart related problems. Also have you had any tests in the past and with what results?
For the exercise, I think I'd keep doing it but switch to lower intensity for a bit.
Where do you get the pain in the legs, and have you tried hard foam rollering for that (sounds like you are fit enough with the upper body strength to do that). I would find a physio if you can to show you all the tricks with that ( and don't roll the back of your knees). Internet videos for foam rollering are a bit patchy (unless somebody can point to a good one.
If you don't have access to a good physio where you are then perhaps have a look at "APPI" the Australian Physiotherapy and Pilates Institute (APPI). The free info there may be just introductory type stuff, and have to pay to get more info (Can anybody recommend any online resources?)
Main thing at the moment is probably not to get stressed (easy to say). Also tricky when exercise is one of the best stress relief techniques.
Perhaps diversify a bit into other forms of exercise and meditation (a teacher with the later can be invaluable).
Could be low Hemaglobins from CLL. I use to run for 25 yrs 3-4 miles, shortly before treatment (6 mos) I couldn't run a block. After treatment back to 3-4 miles.
Some points I forgot to include (but demonstrating in general that I don't properly understand this stuff):
There doesn't seem to be total agreement on whether Cholesterol is all bad (it seems to also have some good features). Have a read of writings of Uffe Ravnshov (good points and bad), intro first:
" . . . indicating that the small effect obtained with the statins is due to their pleiotropic effects. Most likely, it is their effect on the coagulation system, as some of the strongest risk factors in FH are high fibrinogen, high factor VIII, and high prothrombin, because people with FH may have other genetic aberrations as well."
Tricky thing with Cholesterol is most of studies don't seem fully scientific as its so hard to do that (e.g. not ethical).
e.g. Sounds like it might be the bad things that can go with a high cholesterol diet that might be more the issue (?)
Hopefully there are some experts that can show some clear thinking.
Statins are a bit scary to me with the possibility (for some) of muscle damage etc. (Although are probably very good for some and the suggestion seems to be made that its the secondary effects of statins that might be more the benefit.)
I was also interested if there is any CLL link, but papers don't seem to agree (hope I've just made a dumb mistake here somewhere):
I have found relief from leg cramps and leg pain with a product called Theraworx....available all over and on line as well. I prefer the spray on over the rub on.
I'm an avid cyclist and have been for more than 20 years. DXed 2 years ago. My ability to ride at a high level has slowly decreased over the last 2 years. I was treated with Rituximab last year and found that my exercise ability had increased somewhat afterward but has been on a downward spiral for the last 5 months. I get leg pain while cycling at times and definitely afterwards, sometimes for days. Throughout my ride, the lactic acid buildup doesn't seem to clear. I hit a wall and can barely finish the ride sometimes. At this point, the slightest hill brings on breathlessness. A recent visit with my specialist showed my WBC numbers slowly increasing again, however, RBC and HG were in normal ranges. He had no answers for my exercise issues and is leaning towards me seeing a cardiologist. I don't sweat excessively and my heart rate isn't excessive but has always been on the high side. I am 57 years old but still try to push myself. Some people struggle with the diagnosis, I got over that fairly quickly. Now my struggle is dealing with my inability to ride at a high level. Sorry to not be able to offer any suggestions for your issues. I believe that no matter how bad you're feeling it's always better to keep pushing through it.
I am not a doctor, so keep that in mind. CLL does come with some restrictions in what we can and cannot do. Your red blood cell and hemoglobin may have declined and it takes longer for your body to recover from exercise, that is why the newest form of "doping" in Olympic athletes is getting blood transfusion right before competition. Blessings.
Are you being treated for the CLL? sounds like you should be. I had open heart surgery with CLL (picked up 2 infections) ended up spending close to 2 months in the hospital. The CLL I believe made me more susceptible to the infections (pseudomonas and staph). I recovered and started treatment with Ibrutinib after my CLL numbers started to rapidly climb (WBC over 250K et). Fine now and am in remission from CLL.
I too dragged myself to the gym 3 days a week and felt like death warmed over. It is just something you have to do to keep your stamina up, so don't give up, but be nice to yourself and maybe lighten your gym work a little bit.
Ask for an angiogram, from a doctor who will stent you during the angiogram if you need that. I was also diagnosed in 2018 - in fact 2 years ago this week. On watch and wait, and now 6 monthly intervals.
I was very breathless, and I was finding it impossible to go to the gym, which I used to do most days. When I was diagnosed I had ECG and Echocardiogram., results ok, But I also had benign tachycardia, had had it for many years, high heart rate.
5 weeks ago, breathlessness was horrific and I contacted GP who had me admitted to hospital via ambulance. Long story short, they gave me an angiogram, and I had one fully blocked coronary artery and one slightly blocked coronary artery. I am now out of hospital and no longer breathless.
I had my cardiac rehab assessment last week, and the physio has referred me back to my personal trainer to build up my exercise levels slowly.
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