Lymphadema risks - Hot tubs and more....

[Rozebud]

I know that many of you are dealing with recurrances and very serious issues, so I hope I don't detract with my lymphadema questions.

Jojo and I were having a discussion offline. I have a brochure that tells me the 100 things I can't do anymore in order to decrease the odds of getting lymphadema. The biggest one that is comical is not lifting over 10 lbs when I have 2 little ones at home. Anyway, I went to a lymphetic therapist who told me to use common sense and not put unnecessary restrictions on my life, and if I do get it, she will help me get rid of it (I do have mild swelling now, but barely noticable to anyone but me, and I'm 5 months out from surgery).

What things do you do and not do? In particular, do you go into hot tubs? We are on vacation this week - I was in a hot tub (not terribly hot, mind you) for about 15 minutes to my neck. I also waterskied - only about 3 minutes then dropped and used mostly my left arm for holding on. Anyone else pushing the limits - and if so, what are the outcomes? Not knowing my future - I'm just not willing to give everything I enjoy up at this point!

TIA!

[lauren]

For the past nearly two years I have been doing HOT yoga in a 110 degree room as well as Ashtanga-based yoga, in which I stand on my hands, my head and my forearms. I am very fit, and I have had no problems. Go figure.

[Linda in Calif]

I'd LOVE to see that list! I take care of kids for a living and constantly am lifting upwards of 35lbs onto changing tables, swings, playpens, etc. I have very mild lymphadema...some days it bothers me a little but most days are OK. I have found that bending over pulling weeds will make it worse. A couple of weeks ago our new kitten bit me on the thumb and I actually felt the arm start to react when the bite started to get infected. I called my ONC and he put me on antibiotics and it cleared right up. Take Care, Linda

[JoJo]

lauren, I am glad you are able to do yoga without any problems! :-) I have always wondered what it is like to do Pilates. My brother gave me a Pilates kit for Xmas, but the box remains unopened! Ooops! :-)

BOTH of my lymphatic and physical therapists tell me to NOT stand on my hands while doing yoga or exercising, in prevention of lymphedema. I ride my bike sometimes, so I was told that it is OK to lean on the handlebars, as long as I do not bike all day long. (i.e. the Lance Armstrong mode!)

?????

PS: Rozebud, what does TIA stand for?

[lauren]

I was told NOT to bike by the physical therapist in the hospital. But I do anyway. And it turns out that my breast surgeon totally disagrees with the PT on that point. She says that the primary risky behavior is MANICURES. Fine by me.

[Sandy H.]

I have been to two lymphedema clinics and they both pretty much said the same. No hot tubs, saunas, hot showers, extreme cold or hot, lifting more then 5 lbs. with effected arm, repetative motions, wear gloves when gardening, and to prevent bug bites and scratches. No salt, drinks lots of water. Always wear a sleeve during the day. When I was getting lymphedema treatment there was a lady who had had a mastectomy with nodes removed 30 years ago, no problems until now and her arm was swelling from hand to shoulder. The therapist told me that was an example that it can happen anytime and you may not know what caused it. They were seeing her for the first time and were going to question her as to what she was doing different if anything. I get manicures as I have acrylic nails and so far have had no problem. I make sure they do not cut the cuticles. I also did my own research on it as I was pretty bumed out when I was told I had to be careful of all the above. Our bodies are all different and so what works for one may not work for the other. I have seen some nasty looking hands and arms from lymphedema and they can swell very fast like just over night. We have to do what we feel comfortable doing. If it is going to make you feel like you are giving up all the fun in life then take the chance and deal with the consequences when they happen. Hug, Sandy

[lauren]

I think you expressed it right! I NEED to do yoga, I NEED to challenge myself with headstands and handstands and I NEED to be in the heat. I also need to ski, and I am sure that qualifies as "extreme cold" since I typically spend a week skiing in February at high altitude.

What I do not need for a complete life is a manicure or to garden without gloves!

I am lucky I have had no problems with lymphedema. I do not know what I would do if I could not wear sleeveless shirts and slip dresses or do the full yoga practice that I do....

See? We are all lucky in our own way...

[Sandy H.]

I wear only sleeveless in the summer. I have yet to see anyone with a sleeve on their arm. I get lots of questions but hey, maybe they are learning something new! Life has a different meaning to us all. Hugs, Sandy

[lauren]

yes, that is true...and thank God we are both living relatively happily with what we are both dealing with, respectively....lauren

[lauren]

That list is RIDICULOUS. I saw it too. The biggest cause of lymphedema is infection. If you get an infection, you get antibiotics to combat it FAST. I think it is ridiculous to talk of not taking saunas and hot baths and not lifting children. It's utter hogwash.