weirdness with exercise

[Mend123]

rejoined my gym to try to get strength exercise into my life. It’s a gym with hard 45 min classes after three weeks of constant soreness (having difficulty walking up and down steps), that subsided but now I keep getting odd injuries. After one workout, both ankles has visible black and blue marks (and nothing hit them). After Pilates my stomach and back are sore to the touch (but no black and blue marks). It’s been two weeks since that Pilates class. Also had severe pain in my shin for weeks. I’m on watch and wait. I’ve never had this happen with exercise. Anyone else have this happen?

[Greenbunnies]

I think CLL can really reduce exercise tolerance - it certainly has for me anyway.

I got diagnosed this year, but had stopped exercising a few months before that because of infections not clearing, a knee injury that wasn't healing, and general exhaustion. I've been on treatment for 2-3 months now, it's going well and I'm feeling much better - so tried some gentle exercise again for the first time in 6 months and I'm still recovering 3 days later! And generally I still have to rest a lot if I exert myself more than usual. It doesn't feel like normal, my body is obviously still working overtime.

I think a lot of people with CLL get odd bruising which is caused by low platelets? My platelets have been fine, but an orthopaedic surgeon I saw about my knee said that CLL would generally make the healing process slower. Perhaps worth checking at your next appointment?

[DanBro1 in reply to Greenbunnies]

Totally agree. Before I was diagnosed with CLL, I could not spend more than 5–10 minutes on my elliptical machine. I now spend 30 minutes on the treadmill plus another 10–15 minutes on the elliptical machine. CLL just sucks the energy out of you.....

[cajunjeff]

I can give a guess. I devote one or two days each week to stomach/core exercises only. That includes planks, leg lifts, sit ups and dead bugs. If I take as much as a week or two off, I can get really sore when I resume. I think your stomach muscles might still be sore from Pilates. This will get better if you keep it up.

Shin splints are common with people starting exercise phyxphysio.com.au/shin-spli....

As for black and blue marks, that is more likely Cll related. Even with improved platelets, I still get spontaneous bruising now and then. Its probably no big deal, but still something to report to your doc.

I hope you stay with your exercise program. I work out 3 or 4 times a week and walk about 5 miles daily. I have to force myself to exercise some days, even a short work out is better than none. I find exercise helps me mentally and physically.

[DanBro1 in reply to cajunjeff]

You are totally right, Cajunjeff, exercise really helps with energy and positive mentality! I exercise 45 minutes by treadmill and elliptical machine at least 3 times per week now days. Feel guilty if I skip.......

[Greenbunnies in reply to DanBro1]

Agree, it helps so much! Not being able to exercise when I was so ill earlier this year was so depressing and getting back to the gym is fantastic. Even if I can only manage a poor 25 mins to your 45 mins, DanBro ... 😅

[DanBro1 in reply to Greenbunnies]

In addition to exercising, I've added eat less and eat better to my routine. I've dropped 55 pounds since my uMRD. Have 25 pounds more to go....

[Guffy]

Hi there! I've been on w and w for 5 years. I haven't experienced that, but I often get tired after only a few moments of heavy exercise, like digging in the garden. I find myself puffing, and have to stop. I love the garden, and fortunately, I don't experience this every day. Also, I sometimes experience difficulty walking and keeping balance. The doc says this is probably due to CLL. Gosh, we have a weird disease, don't we? Seems to be tailor-made for the individual!

Good on you for exercising. We're told we shouldn't stop it. But perhaps a physician and physiotherapist could suggest a regime adapted to your unfortunate difficulties. Take care!

[LeoPa]

Could it be that you overdid the intensity of exercising thanks to trying to follow the class? Perhaps taking it somewhat easier and building up the strength slowly and gradually would serve you better?

[Gampo]

Hi, without knowing what your counts are and how much the CLL has progressed, I can just say that CLL impacts your resilience and that's more apparent when you're exercising. In my first year of diagnosis, with a WBC of 35 and pretty healthy platelets, I continued exercising as normal and even completed my first ultra marathon. As CLL progressed, I got slower, then couldn't go as far and by the time I was nearing treatment (WBC 100 and platelets 80) I'd all but stopped exercise. Doctors kept saying to me 'keep up some form of exercise but be KIND to yourself', punishing a body fighting every day against CLL just wasn't very sensible. CLL is a broad cancer and it affects us all differently, I had some random symptoms come and go - like getting really light headed when exercising sometimes but not others. I also had shin splints return which I'd not had since my early 20s. It doesn't sound like you're new to exercise, so the shin splints is just another indication that your body is struggling to do what used to be normal. I hope you can get some guidance / reassurance from your Doctor but as others here have said, ease up on the intensity but try to keep up exercise in some form. I found Glen Sabin's book Nof1 very inspiring, he would go for 2 hour walks each day (he didn't have to work much at the time) in nature, breathing deeply and only allowing positive thoughts. Good luck

[kablea]

That exercise class is clearly too hard. Ease back and try a slower approach. I am nearly 77 and I never get that bruising or a problem on the stairs. I also found gym work, which assumes a general level of fitness, to be very poor as I grew older. Few people, even the old, realise how their bodies weaken over time. Finding a level of exercise, that only loads lightly on the muscles, is the best way forward. That needs a coach who really understands age!

[Pearlpink]

Hi. I used to get long bone pain on watch and wait. I learnt that it was worse if I was low on iron or vitamin d.

I actually had a massive spleen and I think my turnover of cells was really high, so that my lymphocytes always appeared not very high. I had profound fatigue though.

I had a scan done as a completely separate event, as part of a prevention trial, and so it was a big shock to learn that my spleen was huge. The growth of my spleen echoed the onset of my symptoms. It precipitated my treatment.

Make sure you tell your hospital about your symptoms, and if you’ve never had a baseline scan, don’t feel shy to ask.

I had to take supplements as my ferritin, and vitamins were always low, despite very varied diet.

We are all different but don’t let your watch and wait team dismiss your symptoms x

[blowinginthewind]

Slow and steady exercise is best. I have a physical disability, caused by an accident many years before I was diagnosed with CLL. I found a personal trainer who has extra qualifications in rehab after accident or illness, and I still go to him each week. I used to go to the gym daily, but of course couldn't during the pandemic, and I had already dropped some of daily my sessions before CLL diagnosis. The trainer is a crazy guy, and very good at his job. I am in the middle of tests relating to my cancer and another possible unrelated cancer. I see him Tuesday morning and I got home about 20 minutes ago. He works exercise around my my energy levels, and I am slowly building my exercise tolerance up.

I would recommend finding someone like this near where you live, even if you only see them once a month. It has really helped me

Liz in UK

[CoachVera55]

Wow so much to unpack here. I wake up with muscle fatigue meaning I feel like I worked out already🤷🏽‍♀️ I have a higher muscle mass then most women & I love exercising even more for my mental health than my physcial well being. I was working out 60-90 min of Cardio 5/6 days per week & teaching 2 - 1hr Classes per week with my CLL Leukemia progression. Definitely not able to do that now & I am trying to find a slower routine. 30min Dancing on my Vibration Plate & using the Elliptical Arms or Resistance Bands was too much because right sided chestpain happened. It was exactly a month after the Pleurisy I got with 60min on a stationary bike but thank GOD it was not on the left & did not affect my breathing like in May. It has gone but lifting my groceries yesterday got me in left hip pain today😫 I have a CT Scan of my Chest due so let me make that appointment & see whats what until I see my new Onc June 19. Go easy but don’t stop is the best advice I got also let you doctors know also. #GODSPEED🙏🏾