Lymph nodes removed & working out?

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cs34
cs34 Member Posts: 253
edited June 2014 in Lymphedema

I wasn't sure where to post this. 

My surgery was two years ago. BMX w immediate latt flap and eight lymph nodes removed.

I am overweight and out of shape...really out of shape and actually, really over weight! LOL

I started the Livestrong program at the YMCA and we did the arm machines. I went really light (5lbs/no pounds) and it was movements my arms/upper body has not done in years

Needless to say (?), my arm was killing me last night and some today and felt like it was 500lbs! I am not swollen at all. 

Is this normal?

Should I not do arm exercises?

Will it get better the more I exercise and get in shape?  

Help! Please.  Smile

Comments

  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2011

    Cs, brava to you for deciding to take back control of the "overweight and out of shape"!Cool Not easy!Tongue out

    Sure sounds like you overdid it, though!Frown No weight and very limited reps would be the way to start, very s-l-o-w-l-y working up. You want to go real easy, never straining the arm or that entire quadrant. We have a few really fit folks here who will hopefully be along with great advice about working out.

    For now, elevate your arm as much as possible (at night on pillows), drink PLENTY of fluids, and give it a rest until it feels better. You might want to get a referral from any doctor on your team to a well-trained lymphedema therapist, who can give you the personalized help you need to proceed safely. Here's how to find one near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Keep us posted! Be well,
    Binney

  • cs34
    cs34 Member Posts: 253
    edited June 2011

    Hi Binney,

    Thank you so much for the support and the quick reply!!!!!!  Smile So appreciated. 

    Actually, they said that a Lymphedema Dr is part of our program so maybe I can ask her? My PS gave me full go ahead as did my BS.  

    I wanted to see if anyone else had this when they started getting back into shape. Also, I saw that there is a thread about Fitness and Getting Back Into Shape. Maybe I should have posted this there????  Frown

    Anyway, we'll see if anyone else experienced anything similar.

    Thank you again Binney. I hope you have a nice, peaceful day!  

  • NatsFan
    NatsFan Member Posts: 3,745
    edited June 2011

    CS - I had the exact same thing happen to me.  Unfortunately surgeons are not very knowledgable about LE, and many of them think the problem is rare or non-existant. So when they give the all clear for exercise, they're not thinking about LE precautions - they just are thinking about when exercise will no longer harm the surgical areas and don't take the broad view that includes LE.  I did just what you did - I got the all clear from my surgeons, and was determined to lose my 20 chemo pounds, so got right back into heavy duty exercise, including weights, yoga, and other arm stressors.  I took no precautions because, hey - my surgeons gave me the all clear.  And I developed LE.

    The good news is that with proper precautions, there's no reason you can't exercise and still greatly reduce your chances of getting LE.  I would absolutely take advantage of the LE doctor you have access to.  You should be evaluated, given exercises to build up your strength gradually, and possibly be fitted for a compression sleeve and gauntlet to wear while doing exercises that stress the arm (or doing anything that stresses the arm like flying, gardening, snow shoveling, painting a room, etc.)  

    Even with LE, I routinely hike, elliptical, take yoga, do Pilates, jog, weight train, and do a variety of other exercises.  But as Binney says, if you do any exercises that stress the arm or the affected quadrant, you need to work up slooooooooooowly and STOP the minute you feel anything "funny" about your arm, such as heaviness, muscle fatigue, etc.   I was working out with 12 pound free weights before dx.  Under the guidance of my LE therapist, I have exercises to do that I've incorporated into my exercise routine.  But I started out doing them with either zero weight or one pound weights.  It's taken me over 2 years to work up to 6 pound weights.  

    Absolutely stop by the Fitness and Getting Back into Shape section.  There's a great thread there called "Let's Post our Daily Exercise."  We each post whatever exercise we've done daily - whether it's a 10 minute walk around the block to running 5 miles.  We have all levels of treatment - some women are still in active treatment, while others completed active treatment years ago.  Some women are very fit, some women are quite overweight and out of shape, but want to get into better shape.  All are welcome, and we all encourage each other no matter what level we're at.  

    Another good tool - loseit.com.  It's a simple free website where you track your calories in (the food you eat) and the calories out (the exercise you do).  It tells you whether you are over or under your daily calorie allotment, tracks your daily progress, and even tells you when you'll hit your goal weight.  I tried for 2 years to lost my chemo pounds and had very little luck despite working out an hour plus daily.  But after 6 months of faithfully entering every bite and every exercise into loseit.com, as of this very morning, I'm down 10 pounds!!

    You're smart to want to avoid LE and to take precautions, but don't let the fear of LE stop you from adopting a healthier lifestyle.  Binney's website has excellent info, and the LE doctor should help you tailor a program just for you.  

  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2011

    Mary, 10 pounds -- way to go! I just started LoseIt.com a few weeks ago and it's going really well. Love the charts that show you how your nutrient level is and how much under or over you are on the target calories. Very nice set-up. Thank you, Kane, for su ggesting it to me!Smile

    Be well,
    Binney

  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2011

    Just want to add another note of caution here: Katie Schmidtz, the researcher who published the two articles on weight lifting and lymphedema, and a big proponent of weight lifting does NOT endorse the Livestrong Program at the YMCA--she feels the trainers do not understand LE, there's constant turnover in trainers, and no quality standards in trainers.

    She endorses her PALS program, and has tried to have it be in the YMCA's, but it's not working out, so she sends it to trainers and PT's to use.

    There are a number of women on these boards who got LE from Livestrong.

    At Katie's request, I stopped by my local YMCA to check out their LIvestrong Program, and the director told a bunch of my patients, without my approval that I had breast cancer and LE (that's just how professional she is--and she's the state coordinator for Livestrong, and I had to explain how she violated my privacy....), and she herself has no clue about LE restrictions. When I get a request for Livestrong participation: I write a book about the upper extremiy restrictions--low reps, low weights, consider compression and slow progression.

    Kira

  • ktym
    ktym Member Posts: 2,637
    edited June 2011

    OMG kira, I would be livid.  So unprofessional, that is absolutely unacceptable.  Even if I didn't know you if I was a person starting up that program and she violated someone's privacy like that I'd be out of there in a heart beat.  No way someone with that little ethics or sense would I trust my health to.  To say nothing of always wondering when she'd be blabbing around about anything she heard or noticed about me next.

  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2011

    kmmd, she sat in the crowded YMCA waiting room--and this woman is touted as the model Livestrong coordinator, a bc survivor, who says she "had" LE: and she loudly told me that a woman, who comes to our office, was suffering a recurrence.

    Then she told me, as I'd called to set up the appointment for a tour of the Y and she runs both Livestrong and a stretching program for women with breast cancer, that she'd shared with the breast cancer class that I'd be joining them (I NEVER said that) and my name, where I worked, my diagnosis and that I have LE. 

    I sent her an email about how violated I felt, and that she should never do this to anyone, and that she was quite possibly violating HIPPA as well, as Lifestrong may fall under a health related service.

    A few days later she thanked me for my email. I doubt she really understands.

    I told Katie Schmidtz all about it, and she was horrified, and it also confirmed her concerns about Livestrong. Mine too.

    I teach a class in the local med school: and I teach the medical students that self-revelation is really not appreciated by patients, and we also talk about boundaries. And ethics. And privacy.

    I was at a work related  function last night and saw a colleague who was treated at the center where I work, and we hugged, but never, ever mentioned how we knew each other outside of the obvious work connection. 

    The sad thing is that this woman is held up by the YMCA as the ideal Livestrong coordinator for a state...

    Kira

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