The "Thin Line" of Lymphedema

nibbana, as you're discovering, exercise for LE is actually a two-edged sword. Yes, using the muscles in the arm helps pump fluid, but it also increases your general circulation, so more lymph fluid ends up there needing to be pumped. There's a balance somewhere in there--your "thin line"--and it's different for each of us. When Katy Schmitz did her studies on exercising aiding LE control, there were some women who simply couldn't do it without swelling, no matter how slowly they upped the increments. So it's (sadly) not a one-size-fits-all formula, and what works for so many women to protect and control their LE, just causes others to swell.

I'm one of the ones that can't do much without causing a flare. It's taken me a long time, but I do know when I'm crossing the line. Sometimes, in special circumstances, I cross it anyway, knowing I can regain control again even though that's hard to do. But I sure don't do it on a regular basis, and I try to pay close attention to just where that line is.

Sometimes, nibanna, it DOES make me crazy! Nothing about LE is easy, but it does get easier to manage with time and experience. Hang tough!
Binney

Nibbana: the studies on weight lifiting helping LE required that the women be "stable"--have not needed to get any LE treatment for at least 6 months. So, the benefit--which was primarily decreased flares--was only seen in women who had achieved stability before trying the program.

She did do a study on women at risk and claimed that weight lifting could prevent LE, but the study wasn't powered to show that. Just if it caused harm.

So, there is a concept of "lymphatic transport capacity"--how much lymph your system can remove, and it declines with the insults of surgery, chemo, infection. It is not a static amount, but at a moment in time, it is the ability of your system to remove lymph fluid.

So, if you increase lymph fluid to the area--with exercise, warmth--the transport capacity can't keep up, and you swell.

Ways to help transport capacity are compression garments, bandaging and exercises that promote lymphatic clearance--like Lebed/healthysteps exercises.

Even the PAL protocol had the women just weight lift twice a week, with cardio and stretching.

So, before LE we could exercise without thinking about swelling. After LE, we need to factor it in. There are studies that show that women with LE swell with walking, but it goes down after exercise.

I think you get things under control, and exercise the limb. Prior to control, you keep up with cardio--as deep breathing is good for lymphatic transport.

Carol57 has written amazing posts about exercise. We should find one and bump it.

Kira

Nibbana, I really appreciate what you are saying. There is a "fine line" and I can't seem to understand it and LE causes me alot of stress.

I am taking yoga lessons and I do wear a sleeve and gauntlet on the node compromised side, nothing on the node in tact side, and I have no idea if any of this is OK for me. It is crazy to become fearful of yoga! but I am.

I appreciated Kira's explanation about how increased exercise "could" be a problem.

Would love to hear more stories...

Linda, the PAL Protocol stands for Physical Activity and Lymphedema, and it is a set of weight-lifting guidelines developed by Dr. Kathryn Schmitz and her research team at the University of Pennsylvania here in the US.  The research goal was to find out if the age-old advice is accurate that those with or at risk of LE should not lift more than 10 or 15 pounds.  So they did an 18-month trial to introduce women with LE to weight training, crafting guidelines as they went, based on what lifting behaviors triggered problems, and what approaches did not.

There is some controversy over whether the study authors over-reached in their conclusions about whether weight lifting can protect us from LE. One school of thought is that by conditioning our arms and upper bodies, we prepare the body to heft greater weight without signaling 'stress' to the lymphatic system.  This appeared to work for many in the study, but it did not protect everyone--some participants had LE flares with exercise, no matter how carefully they followed the guidelines.

One good resource for understanding what the PAL Trial tells us is to read an article that Dr. Schmitz wrote after our friends at Step-up, Speak-out.org challenged her on some of the journal article's interpretations. They were particularly concerned because the media at the time (2009) picked up a few sentences in the original research publication and published headlines that 'weight lifting can cure LE' or 'can prevent LE' which are certainly not true. So in this article--http://www.lymphnet.org/pdfDocs/Weight_LE_Misconception.pdf--Dr. Schmitz explains what, in her view, the Trial results do and do not mean regarding LE risks.

There are so many variables in any kind of exercise--how fit you are when you start; how often you do it and how much rest you get in between; form--do you have someone else watching to make sure it's as good as you think it is?--and in weight lifting, how fast you are adding weight, and whether you are doing lots of repetitions with light weight, or fewer repetitions with heavier weight. So there's never going to be a one-size-fits-all effect of weight lifting or any other exercise on our LE.  Oh and of course, read any ten posts in any LE thread and it becomes obvious that we all have different manifestations of our LE!  No wonder the LE outcome of exercise is so individual.

 Carol

Is it Kira who does the gentle yoga, Carol? I can't recall. A couple here do, or they modify or sit out certain positions. It seems to be great for post-BC exercise. And, Nibbana, you get that great breathing-relaxing-meditation benefit that goes along with it. The last time I saw my therapist there was a flyer on her wall for a yoga class. I asked about it and she said it was good, so I took down the info. I have wanted to try this, too. I think it will be good for posture and flexibility. I did yoga when I was in my teens, but that was over forty years ago! I do remember I liked it a lot, so it's been in the back of my head to try again. Let us know how it goes!

I started yoga last winter and it has been extremely helpful for me. It has greatly relieved the Femara stiffness and achiness and my ROM on my surgery side has also improved.

I spoke with my yoga teacher about my limitiations due to LE so she modifies poses for me. I started out doing downward dog against the wall and now do it leaning on a chair. Other poses are modified as we go along.

If anyone starts yoga I suggest speaking to the teacher about your personal limitations so you can get help with modifications.

Leah

   I have been going to a physical therapist for shoulder tendonitis for about 8 wks. I had a double mastectomy in April 2011 with micrometasis in my RT sentinentel node.(Stage llb) Had chemo which included A/C & Taxol & 1 yr. of herceptin infusions for Her+positive breast cancer. I have done pretty well so far, but since I have had therapy last Monday I had swelling in my upper arm & under my RT arm. Why, all of a sudden did this happen? My shoulder felt good when I was there, but by the time I got home I felt like it was "heavy". Then I notice swelling & it was uncomfortable & tingling.It is not red, no fever, just irritating. I have put ice on it, elevated it & tried to rest a little. Also, I recently had heel tendonitis.(all since chemo stopped)Any suggestions for me?  I do not want this to turn into lymphedema.

Sharon, I too needed PT for a shoulder problem, and the best thing to do is find a PT who is also trained in LE. With that double training, you are more likely to have success. Oh, and my PT did measure me before therapy began.

I would only add what Binny said about what to do now. Oh, I also wore a sleeve and gauntlet for all my PT.

I have to say I was frightened all through PT that I would get a LE reaction.

.  "So they did an 18-month trial to  introduce women with LE to weight training, crafting guidelines ..."

I would be much more confident in the results if the trials were done on women w/OUT  LE.

Hello everyone,..I ahve been taking a restorative yoga class (was done over the summer, soon to start up again). I have a question about LE/cording... every once in awhile I get that nagging cord back under my arm..can see the "line" when you touch it have way up and around my forarm about 10 inches...I continue to do my stretches/exercises and one day it disapears for weeks sometimes months..noticed its baaaaaaaack.  no real pain or problems with range of motion.  Should I be wearing a sleave when the cord is present?  I have been to a therapist, twice, she said my measurements are good, by tihe time I got in for the cording, it was gone! Figures!  any advice?  I want to start going to a gym for aerobic/weight lifing (slowly of course) classes, but I don't know what to do?  The advice I get from MD and therapist is avoid wieight bearing and you should be fine.

ANy info or adivice is welcome and appreciated!!