LE and jogging

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MicheleS
MicheleS Member Posts: 937
edited June 2014 in Lymphedema

Hi everyone!

I have been dealing with very mild LE symptoms.  I hesitate to even post about it here because I feel like I am whining when ya'll are dealing with some difficult symptoms... But, things seem to be getting worse, not better and I need to pick you brains.

BC history-- lf mx 1/09 (7 nodes taken), rt mx 11/09 (prophy), delayed recon (implant) 5/10-11/10.

I didn't have rads.  LE symptoms 1st started after TE's were placed.  I developed cellulitis on the left. After the exchange, the left had delayed healing.  Then, PS convinced me to do nipples. (I really don't learn, do I?) You guessed it-- lefty didn't cooperate.  I am refusing the tats on mynipples... I think I have finally gotten the message.  Yell

Last year I had swelling of my left "bat-wing" (ha!), and bra-overhang area.  I also think that my left breast (not a breast... but recon-ed breast) is bigger.  There's always some pitting edema under it.  I also developed a frozen shoulder out of the deal.  Got lots of nifty scans to rule out really bad stuff and got sent to a *regular* PT by my breast surgeon.  I freaked about the time he started discussing applying heat and got my onc to send me to a LE therapist who is also an occupational therapist.  At the time I was trying to strength train with weights... and was not taking care of myself. She managed to get my frozen shoulder unfrozen and taught me how to safely exercise (theraband twice a week and don't work to exhaustion).  She also put me in a Juzo sleeve and told me to wear it when exercising.  Heaviness of arm and bat-wing swelling got mostly better.

Fast forward to now... I have started a running (ok, jogging) program. yay me!  However, my stupid arm hurts ALL THE TIME and my implant is aching so much I want to rip off my bra.  arrrrgh. I wear my sleeve (almost) everytime I run.  I cross train too but use a theraband or 1 lb weights for upper body work.  I do yoga but modify, modify, modify.

So, my questions are:

1. Please reassure me that this sounds like LE and not a recurrence.  I can't help but worry some... being TN and all.

2. Should I go back to LE occ therapist?  This is $$ for me because it is out of network.

3. See plastic surgeon again?  It has been almost a yr.

4. Just keep on, keeping on? and accept that this is the "new normal"?  However, the pain/heaviness in my "breast" is getting worse.

5. Stop running? (please don't say that!)

6. Wear some other sort of garment?  I have a compression tank (spanx variety) but it really is uncomfortable... Maybe that discomfort would resolve?

7. Get the stupid implants out? 

advice!!

Comments

  • Leah_S
    Leah_S Member Posts: 8,458
    edited March 2012

    Michele, it sounds to me like it would be a good idea to get back to an LE therapist. Maybe do some research and find out if there's one that's in-network for you.

    I don't know a lot about insurance in the U.S., but can you find out how much you can get reimbursed if there is no LE therapist that's in-network?

    Best of luck.

    Leah

  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2012

    Michele, goodness!Frown Sure does sound like it could be LE, but if so, it's LE that's not under control and will continue to give you grief until it is.

    Has your therapist taught you how to do self-MLD? Do you have a glove or gauntlet to wear with your sleeve? Have you tried any other compression garments for your breast/trunk?

    I agree with Leah that a search for another LE therapist you could be helpful. Here's information on finding well-trained LE therapists near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    And here's information about truncal lymphedema:
    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    At the bottom of that page are links to several kinds of breast compression options you might try, but check it out with your therapist too, as she should have suggestions specific to your particular needs.

    Exercise is good. Jogging is good. But only if you've already got all the tools you need to manage the LE, and it sounds like you might be missing some that would help. Let us know what you discover!
    Binney

  • MicheleS
    MicheleS Member Posts: 937
    edited March 2012

    Binney- can jogging make LE worse?  or is this just a coincidence?

    I will call my LE occ therapist next week.  I think she needs to see me.  :( darn.

  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2012

    Michele, LE is a bit different for each of us, and activities that aggravate it for one of us may not bother others. So, yeah, it's entirely possible that jogging could make things worse. BUT!!! There are ways around that, and you'll need to find out what they are FOR YOU. I like to jog too -- if I did it without proper protection and strategies, though, both my hands and my chest would swell. So I only do it with a well-fitted compression cami and my sleeves and gloves on. I also raise my arms every couple of minutes and open and close my fists slowly as I run. I jog fast enough to make deep breathing an integral part of it, but not so fast that I'm out of breath. And I make a point of staying really well hydrated.

    Good idea to touch down with the therapist, make sure your compression garments are appropriate, review how you're doing MLD (it's easy to go too fast or apply too much pressure, or even to forget steps, so having her check your technique will help), and give you some personalized suggestions for keeping everything under control while you're active.

    Let us know what you discover, please!
    Gentle hugs,
    Binney

  • kharimata
    kharimata Member Posts: 53
    edited April 2012

    Hai, i have LE on the legs, and for me jogging works well. But off course it's in my legs, so the pump of my muscles pushes the water up.. I heard and experienced that swimming is very good. The same day i don't really notice it, but when I wake up in the morning my legs are much better. I think this will be the same with arms, unless you don't over-do. (well... trying to fight water ... with water: why not!) Greetings Kharimata

  • NatsFan
    NatsFan Member Posts: 3,745
    edited April 2012

    Jogging definitely helps my truncal LE.  Ellipticalling and other vigorous aerobic exercises have the same beneficial effect. I can definitely tell the difference when I slack off the aerobic stuff for a few days.  

    My LE is early stage and controlled enough that I'm able to jog and do other aerobic exercise without having to wear truncal or arm compression, but obviously I monitor that situation.  I do wear well-fitted high-back sports bras - it's the one area where I don't go bargain shopping.   And of course I always wear my sleeve and gauntlet when doing other exercise like weight training and yoga (absolutely with modified poses).

    Sounds like a visit with a good LE therapist is warranted to make sure you have all the tools you need to manage your LE under control.   

    I'm running my first 10K this Sunday - wish me luck!!!  Cool

  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2012

    Mary, good for you!Cool That's a long jaunt. Sure hope the weather cooperates and gives a calm and cool day. Drink plenty! Enjoy! And for goodness sake come tell us how it goes.

    Kharimata, are you able to swim year-round? It really does help with the lymphedema, and like you I always notice it the next day. It seems to act like an MLD massage without all the effort!

    Be well,
    Binney

  • NatsFan
    NatsFan Member Posts: 3,745
    edited April 2012
    The forecast for race time is about 50 degrees with maybe a scattered shower.  Between the LE and the AI hot flashes, 50 degrees with a chance of rain is PERFECT running weather for me!  I'll definitely report back - once I recover!!  Tongue out
  • hugz4u
    hugz4u Member Posts: 2,781
    edited April 2012

    Natsfan,Will be thinking of the Race day. You show'em girl!

    Kharimata, I would love to swim at least 3 times a week but my skin itchs after about 3 times! Yes do swim if you can, It's the best.

  • kharimata
    kharimata Member Posts: 53
    edited June 2012

    @Binney4: luckely i am able to swim year-round, the swimming pool is next door! and i bought a year ticket it is 130 euro, but you can swim from 7:30-22:30 every day! 

    so one thing positive about the LE is that now whith this swimming i am getting at good health..

    it is true that the skin itchs, i have it too, after the swimming i put creme on for extreme dry skin  and then i go to bed with this fatty creme on for the night it helps!

    the only thing is that some days, when my LE is bad, i am a bit embarrased with this leg to go swimming... but i can't stop swimming because of this..;

    Greetings! 

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