When I showed up at the physiotherapist at the hospital for my first official treatment for lymphedema I still had a hard time understanding what was happening with my legs. And I was convinced that somehow everything could go back to normal and the swelling would disappear. So it was a great shock when I was told not only that this state of being with lymphedema is permanent and cannot be fixed, but also that there is a lot of restrictions on what I can and cannot do.
When I jumped up on to the bauble at the physiotherapist’s office at my first appointment she immediately started instructed me on how my future – now with lymphedema – would be.
- “You cannot get sun on your legs because the heat worsens the lymphedema.”
- “You may under no circumstances get sunburned on your legs either since this can result in inflammations and because your lymphatic system is not working, you will not be able to heal.”
- “How do you shave your legs? No, that probably will not be a problem, cause the raisers today are much better and you don’t cut yourself on them.”
This bombardement of information kept going for several minutes.
I was told I could not go on warm charter vacations, I was not allowed to wear stilettoes (look here for a specific article on that subject), I was not allowed to ever walk around without my stockings, I could not take warm showers, I may not under any circumstances get scratches, I had to massage my legs in a certain way once or twice every single day, I could not ever again wear tight paints, I was not allowed, I was not allowed, I was not allowed…
Tears were just running down my face when I was given all this information. I could not comprehend all these things, these restrictions she was telling me and I felt like all these prohibitions would ruin most of my life. I kept thinking that it was just some kind of nightmare that I would wake up from in seconds.
It can all seem very difficult when you are first diagnosed with lymphedema. But as it turns out, must of the things I was told back then I could not do ever again, I actually now can do, because I know my lymphedema – and I know how to make my daily life work without worsening my lymphedema or putting myself in any health related danger. So don’t get discouraged by my story above, because it turns out it might not be as bad as the physiotherapist told me back then.
With that being said there are some basic do’s and dont’s that you would be wise not to ignore when you have lymphedema. These are:
- It would be best for you not to walk around without your compression stockings.
With that being said, I am not religious about it and I for example don’t put on my stockings to go out of bed and gets a glass of water. But in daily life, wear your stockings!
- Exercise is a miracle worker when it comes to lymphedema.
Exercise increases drainage of the lymphatic system. So try exercising a little every day, even if it is only going for a walk.
- Try keeping your weight at a “normal” level.
To say it in other words, overweight is very problematic when you have lymphedema.
- Take care of your skin. Use lotion to make sure the skin does not get dry and stays flexible – this state of the skin prevents bacteria from getting under your skin.
- Try to avoid scratches/wounds on your legs – the lymphedema complicates the healing process and you will have a harder time battling infections in the area.
- Try to avoid too much sun and heat on the area with lymphedema, even when wearing the stockings, since it can worsen the swelling. A sunburn may also cause inflammation.
With that being said, I am still able go on warm holidays, take a warm bath once in a while and use a Finnish sauna when I go on spa trips. Get to know your own lymphedema and what works for you.
- Try to avoid wearing very tight clothes on the area with lymphedema.
It can really hurt on my legs when I wear too tight jeans for example, because the tight jeans hinder the lymphatic flow in my legs.
Besides these basic things you might experience that there are other things that you should be aware of with your own lymphedema. I have written a lot of the things I have learned about my lymphedema – on what is good and bad for me – in the articles under “My way to a great life with lymphedema” and under “Let’s talk specifics”. In these articles you might get further inspiration on additional do’s and dont’s.