Exercise and leg lymphoedema

[Ola22]

Hi,

I am a relatively fit 55 year old with unilateral primary lower limb lymphoedema. Since diagnosis two years ago I have been advised to continue with the exercise I was doing prior to the car crash 💥 diagnosis. I was used to running a couple of times weekly to keep fit for about an hour or so approx 10k. I gave this up as I found my leg was suffering too much with the intensity of the exercise and despite resting it post exercise I was worried I was making things worse! Instead I have resorted to slightly less impactful exercise- walking/ hiking pilates and yoga classes at the weekend and a swim.

I have just been away for an amazing weeks hiking in the french alps doing a section of the GR5. This entailed pretty strenuous days hiking of circa 22-26ks with a backpack 🎒! I have to confess by day 7 my leg was not happy and I found the swelling struggled to reduce in the evening and overnight. I am pleased to say I am now fully rested after a few days of doing very little hiking/ exercise apart from short walks and notably my leg is returning to its normal pre holiday size!

Apologies this is quite a ramble but I’d like to hear from anyone who like me loves the outdoors and enjoys hiking in the mountains if they feel this is something that has made their lymphedema worse over the years? I’d love to continue a trip like this yearly but fear I maybe pushing the boundaries too much and leading to deterioration of my condition.🫣🥴🧐

[ofcourse]

hi I’ve had primary lymphodema all my life I’m 77 now. Compression hosiery keeps it down and the heaviest of exercise ( Rumanian dead lift 40kilos ) do me nothing but good. If you lead an absolutely healthy life have a steady weight and push yourself as hard as you can then exercise properly done is nothing but good ( ps I’m a body builder )

Health is a contract and we should do our utmost to help ourselves. Rambling s not my thing but the idea of a healthy walk exacerbating our condition sounds nonsense. Good for you - in both senses

[SRML]

Hi Ola22,

I have had secondary lymphoedema for 3yrs and, like you, I was really scared of causing irreparable damage by doing the wrong thing. But I’ve learnt that the swelling goes up but it will come down again with the right management. I have to pace myself differently but I don’t believe it should stop you doing anything you want to do. I’ve just joined the gym for the first time at 60 and trying to build my strength. The thing I find hardest and makes my swelling worse is standing still! The LSN Facebook page highlighted Didi Okoh who is running in the Paralympics so I’m watching out for her. It’s wonderful to see these achievements and I’m sure there are many examples amongst this community. Best of luck

[sleeviejeebies]

Hi Ola,Your trip sounds amazing! In my experience, I have found that I have had to adapt (unlike the other posters). I used to be incredibly active and do a range of activities (hiking, climbing, combat classes, swimming, yoga), but since developing lymphoedema (for me, it's my arm), most of these activities aggravate things. I only swim now, which I find beneficial, and do regularly. It upsets me that I can't do the things I used to do, especially walking (short distances are OK). (I guess with walking the problem is gravity! and maybe it's more beneficial for people with leg lymphoedema.) I've even given up yoga, which people keep recommending, because so many poses are weight bearing on the arm.

I personally wouldn't do things that make the swelling worse but we still have to try and enjoy life! And exercise is so beneficial for mental and physical health in general. 😊

Anyway, I hope you can continue with the hiking and enjoy many more trips away!

[DeborahS32]

hi, Ola I’m in much the same position as you but a bit older. I have primary lymphoedema but only became symptomatic (one leg only) when I was 61. Took several frustrating years before I finally got a proper diagnosis and then treatment, but since then it’s been well managed and I’m still pretty active.

I wear a class 3 full length made to measure stocking plus toe cap and I wear it all day every day. I sometimes also wear a comfiwave stocking at night.

I find that walking (and plenty of it) is crucial so I try to fit in at least 6 miles walking a day (mostly active travel). I also love longer distance walks. This year I did the Great Glen Way in Scotland. I do one like that every year and do a couple of long walks most weeks.

I’ve learnt from experience that I need to keep the walking down to a max of about 12 miles a day otherwise swelling and redness increase. Other than that, I’m planning to start running again, working up to 10k but I’ll see how that goes (that’s to stave off osteoporosis). I’m 69 now and don’t plan on stopping being active!

My advice would be learn from your own body what your limits are - yours will be different from mine. Age in itself is not one of them! Nor I would say is lymphoedema - it just depends how you personally are affected.

Enjoy your hiking!

Deborah

[Ola22 in reply to DeborahS32]

Many thanks Deborah. Sounds like you have found your threshold and I realise I have to work out mine. It’s truly a journey..!

[Andy13 in reply to DeborahS32]

I think Deborah makes any very important point. “learn from your own body”. When is your limb, or limbs, more or less swollen?

Strangely my swollen right leg becomes less swollen after long distance travel in my car. Why? I don’t know but probably because of my recumbent position in the car combined with the type of shoes I wear on long distance journeys. So I should probably wear similar shoes at home and put my feet up more !

[choirbird]

Sorry I have Fibro and lower limb Lymphoedema plus multiple other conditions but have not been able to exercise for 28 years so you are managing extremely well with your health.

[Petrolhead276]

have a look at lymphoedema.org/

Are you using compression garments?

You should be able to get them on the nhs.

Get your local hospital consultant to refer you to St George’s (Tooting london) for their specialist Lymphoedema clinic.

The LSN can advise if other clinics around the UK

My son has it in his legs and trunk and I had to push for a referral from my local hospital as they were not treating the Lymphoedema, I had a registrar tell me there was nothing they could do, which is complete BS.

Talk to TSN.

Good luck