Exercise and lymphoedema

Hello! I have mild lymphoedema (result of surgery for cervical cancer) and had my first appointment with a lovely specialist nurse a couple of days ago. She showed my MLD and has ordered compression tights but was a bit concerned about my exercise regime. I have recently started going to the gym and am training to do a 100 km sponsored bike ride in May. She is worried that the ride is too far and that I may swell up and not go down again!

I've never taken much exercise before and have been really enjoying it. I'm now worried about overdoing it without realising it and feel almost scared to go to the gym today. Such a shame because I've been bouncing in there. On Tuesday I did a 10 mile bike ride and then a gym workout and I felt great!

Has anyone got any advice on recreational exercise?

Xx

23 Replies

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  • Hi

    Just be very careful. After my op for cervical cancer I got into fitness too, in fact at my peak and it felt great, but I then started to get niggles in my groin which turned out to be early stages of Lymphedema. I have had a battle in my head over exercise for the fear of making it worse. However, I have decided that I can't let it control me and I have recently got back to the gym too. I love high impact but nor steer clear. I walk a lot, swim, Pilates (still dipping toe in as find it too slow but it is supposed to be great for us, breather etc). I am back to Body Pump which I LOVE, but keep weights at a reasonable level. I have a rebounder too and it's good fun, and again good for pumping lymph fluid.

    Just monitor your leg and wear garments. You will get to know your limits.

    Hope this helps.

    Gx

  • Hi G!

    Thank you so much for your reply. It's so annoying to finally be getting into exercise and then have this worry holding me back and taking some of the enjoyment out of it. I don't want it to control me either. Really good to hear from someone who understands. :) Good advice to keep going but wear the garments and monitor the leg. Thank you!

    x

  • I agree with you.I have only recently been diagnosed with Lymphodema and up to July was going to Pilates and a Aerobics class for over 60s.Now I am very despondent that I will ever be able to return due to restriction in my right leg.Very depressing but hope I can try again soon.

  • you should always wear your compression tights when exercising. I have done a number of charity bike rides (600 miles in a week; challenging terrain) and as long as you wear compression i am sure you will be fine. you don't say what you are doing at the gym, but when training you are better actually exercising on your bike and getting out into the fresh air. don't be tempted to push lots of heavy weights in the gym. instead go for functional movement. NNE

  • Thank you! It's good to hear your encouraging words. I'm not doing anything too drastic at the gym: treadmill, a thing I think might be a cross trainer, a thing where you squeeze something with your thighs or push something with the outside of the thighs (very low weights because I have post-op nerve damage and my inner thigh muscle is rubbish), exercise bike and stuff with a gym ball. (As you can see, I know all the fancy words! ;)) I really like what you're saying about functional movement and it actually gives me an idea of how I could progress. I won't strive for bigger weights on the thigh thing (I think it might be adductor and abductor?) and just gradually build up the treadmill walking and bike riding. I won't be getting my compression tights for a few weeks but I suppose I could get some M&S Shapewear or something to tide me over. I don't want to lose the lovely new habit I've got into! Thanks hm205!

    x

  • I was just reading your comment and it your situation sounds so similar to my own. I too have this in the left leg following treatment for cervical cancer. I have always found that exercise works really well, but I know my limitations. I always know when I have done too much.

    I completed the bike ride that you are training for last year and have signed up again this year. My leg was not affected by this (my back was sore though!)

    Just do what you can, if you overdo it elevate your leg and do your MLD.

    take care

  • Thank you so much for replying. It's hugely encouraging to know you did the ride and are doing it again. I feel so much more positive and feel that with a sensible approach, I will be fine. 😊 Thank you!

    X

  • There is some fantastic MLD experts on here who can hopefully advise.

    Swimming has always been my saviour even before I knew what was wrong with my body.

    How is your body reacting to the exercise at the moment, does the swelling increase do you feel completely wiped out after it.

    Reason I ask is that I just work with what my body says, but hopefully some of the experts can advise if they have all the info.

    Definitely still exercise in some format

    Good luck

  • Thanks for your reply, Rother. I think the swelling may increase slightly but I will monitor it a bit more closely from now. Reading these replies has given me the confidence to carry on and enjoy the exercise ......but listen to my body and not overdo it! :)

  • Are you in the UK, I didn't ask.

    I have found that the medical profession really aren't very clued up on Lymphoedema and it's very much a learning area for them.

    Most physio's haven't a clue, last guy I went to hadn't long finished his course and looked at my blankly when I mentioned the condition.

    I have had primary all my life and only diagnosed in the last five years.

    So as you say listen to your own body it will sh

    Ire tell you if it's struggling

    Unsure of your age but the sooner you nail it the easier it is getting older.

    Good luck in all you do

  • Hi Rother,

    Yes, I am in UK and it does seem that lymphoedema coverage is variable. I spoke to a friend who probably has a similar level of lymphoedema to me and her nurse basically sent her off with a suggestion to get support tights from Boots and took her off the list. I don't think she was even shown how to do SLD. By contrast, I was given lots of time and advice - which I'm going to take! I think listening to my body and understanding what's going on will be key.

    It must be hard getting a diagnosis for primary. At least I knew lymphoedema was a possibility after my surgery so I knew what the swelling was when I saw it. I imagine with primary it's difficult to tell until it's got quite bad. Good luck with yours too!

  • Yes.I am 69 and thought I was doing so well with my exercise.Suddenly I have turned into an old lady overnight.So depressing but I am trying to fight it.

    At present I have terrible skin problem on leg and oozing so got to be careful and on antibiotic for cellulitus but I do have 3 lovely grandsons so have got to try to stay fit for them.

    I am new to this sight and it is so good to see what everyone is doing to improve their condition.

  • Hi. My left leg lymphoedema is attributed to cardiac bypass surgery when a vein was taken from thatleg. Can't complain because the op saved my life! Lymphoedema started 15 years after op and I wear compresion garment every day. At my lymph clinic they time my appointments to fit in with my gym training because they approve of exercise. They did warn me off treadmill because of the high impact, but bike, rowing machine and weights they thoroughly approve of. Swimming (which is not for me) is also great because of non-impact. So keep going to the gym, and gain overall benefit to general health.

    Good luck!

  • Great advice. Thank you! I just walk briskly on the treadmill so hopefully that'll be okay.

  • I would definitely carry on with exercise and you will get used to listening to your own body. I have always found that the Australian view on exercising with Lymphodema is really helpful in fact they did have an all female rowing crew who suffers with it. That was truly inspirational for me at a time when I needed encouragement. When I over do it and trigger an attack I always have to take time out and rest which makes you feel like you have to keep starting all over again but hey I just want to be functionally fit for life... not an athlete. Good luck xx

  • Thank you! I'll just need to get better at listening to my body!

  • Let's go girls..... just remember our compression garments and self awareness, we become the experts in managing our own conditions. On balance exercise is always going to be better for our whole system, help us breathe better, get oxygen to our muscles better etc and our lymphie arms and legs will benefit too as long as we don't suddenly go mad, as with everything it's always about building up to your personal max.

  • Well said! :)

  • I heard from senior nurse last week that Professor Mortimer had mentioned that vibration plates, good quality ones, can help greatly with lymphoedema. I was very glad to hear this because I had been using one and not prior to my cancer operation and subsequent bilateral lymphoedema. I am now looking forward to increasing my sessions. This may help you to strengthen your core muscles and also to increase limb movement, circulation and general body tone. I have a neurological and spinal disorder and I'm still able to use it so hopefully you can and it certainly makes me feel much better. Hope this is helpful for you. Best wishes, Amanda

  • Ooh, thanks for that tip. I'll see if they'be got one. :)

  • I was a gym goer before my operation (cervical cancer) and once I had the all clear I continued after. With the onset of the lymphoedema in my leg I did get scared for a while about making it worse but now I have found that as long as I listen to my body and don't do anything that I know will make me sore the next day ie lots of squats and lunges all in one session then I am finding the benefits far outweigh doing no exercise. If I am starting a new exercise I try and build up slowly rather than going hard straight away (I hope this makes sense) also I find that some days one type of exercise might make me feel great and the next week it might make me swell, walking for instance can be a bit hit and miss for me. hope this helps.

  • Thanks, Mistymay! Useful advice. I went back to the gym yesterday after a week away and nothing too dramatic happened with my legs. I'm just going to keep a careful eye on things! :)

  • I was told by my lymphoedema nurse that exercise is beneficial (I have mild lymphoedema in one leg following treatment for cervical cancer) but a compression stocking must be used when exercising, and to avoid high impact, repetitive exercise. I stick to walking, swimming & Pilates and at the gym I use the cross trainer, exercise bike & rowing machine, but not on a high setting. It's important to listen to your body and build up gradually. I find this regime keeps my leg to a manageable size. I also take prophylactic penicillin to avoid cellulitis & keep my legs well moisturised.

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