Hello lovely ladies! I came back from my first lymphoedema appointment feeling rather deflated. (Sadly, not around the upper thighs area! ;)) I have mild lymphoedema and the lovely nurse showed me how to do SLD, has booked me in for MLD and is ordering me compression tights. I proudly told her of my new love of the gym and about the fact I'm training to do Ride the Night - 100 km at the end of May. She is concerned about me making the lymphoedema irreversibly worse by cycling such a long way. I feel like she has wee-ed on my bonfire! Has anyone else gone a bit exercise-mad despite having lymphoedema and been told it's a bad idea?
do you know about the lymphodema society? They spoke at Jo's last year. Worth giving them a call? I would of thought exercise would have been good for it?
i have not been diagnosed lymphedema but did have some public swelling in the 6 months after my op which they thought could be. I have not had any swelling for a couple of months so hoping it's not. Anyway, I did quite a bit of research as a result of it being suspected and I also try to do a lot of preventative stuff.
exercise is good for lymphedema but they have certain types of excercise they tend to recommend including swimming, aqua aerobics, walking, yoga, Pilates, tai chI etc. I have also discovered that rebounding is very good (bouncing on a small trampoline) as it forces the lymph fluid around the body. Google it.
i think that with exercise it is a case of working out what is best for you and what triggers any swelling. There are examples of ladies who have Carried on exercising with great success. Google Deborah Cordner Carson - she is a successful athlete with lymphededma. A lady called Penny Noble also managed to 'cure' her lymphedema. she unfortunately lost her fight with cc after a recurrence but her blog and advice is still there.
I I would definitely weigh up the specialist advice you are given but also listen closely to your own body and work out what your triggers are. And definitely check out rebounding.
I had my first appointment at the Lymphedema Clinic yesterday and was dismayed to be told that I have mild case of it in both ankles & lower legs! I was told that while exercise is good, prolonged over exertion is not.
I'm already doing Pilates to help with the core muscles, so will be taking along the exercise booklet to my next session so that my instructor can build in some of them to my routine.
On a different note, does any one know if you can get jazzy coloured compression socks? I was given the dreadful "American Tan" coloured ones, and have black ones on order, but it's annoying that they seem to be made with an older target market in mind!
you must feel so disappointed, it's horrid when our lives feel restricted by all this medical stuff. reading your post, I wonder if your nurse has explained fully how lymphodema can be affected by excercise- it isn't a well-understood thing as far as I know having chatted with a private specialist. it is hard for you to decide what risk you personally have without a clear understanding, perhaps?
Could you do some research and/or get another opinion?
Thanks for the info - I'll look into those sources. I've just been out for a bounce on the trampoline. (After emptying my bladder, of course! ;)) Turns out it's more exhausting than it looks, but I did get a good look at the neighbour's garden!
Glad your swelling seems to have gone - long may it stay that way. :)
Maybe if I build up very slowly but get so fit that 100 km is not really over-exertion, I will be fine!! I wonder if that's possible. ;) I'm going to give it a try anyway.
Very sorry to hear you've been given American tan socks - I hope your black ones come soon!
Thanks, Mitch. I am starting to wonder if the nurse normally sees people who are more severely affected than me and is being over-cautious. I'm going to carry on as I have been and monitor my legs carefully. And doing some more research is a good idea.
