New resource for info about safe exercising with LE

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carol57
carol57 Member Posts: 3,567
edited June 2014 in Lymphedema

There are new exercise resources posted on stepup-speakout.org:

http://stepup-speakout.org/Trainer%20doc%20for%20SUSO-040113.pdf

http://stepup-speakout.org/Handout%20doc%20for%20SUSO-040113.pdf

These links take you to downloadable, printable PDF documents. The first is for personal trainers, yoga instructors, fitness class teachers, Pilates instructors, etc., and is designed to help all of them understand LE and what they need to know to provide safe exercise instruction and coaching for those of us with, and at risk of LE. We should all be printing this out and handing it to our exercise coaches or simply people who run our gyms.  The second link is a handout for anyone with or at risk of LE who needs some quick guidelines on safe exercise. Ideally, trainers/teachers who read the first document will give this shorter one out to their clients and participants in their classes.

These documents are based on research + common sense where research was not available. I did the writing with lots of help from our community here. Special thanks to  badger, NatsFan, joyh1109, nitocris, binney, and onebadboob. Also, Dr. Andrea Cheville weighed in with some very helpful insights. 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2013

    WOW! Carol has been tireless in preparing this, doing incredible amounts of research, and then arranging all that material into an exercise guide that is as attractive as it is useful. MANY, MANY THANKS! To all of you who contributed your expertise (and your caringSmile) as well!

    Really grateful for this addition, and hoping it will help get us all past our "flare-fear" and out there doing all we can to regain strength and great health.

    Onward!Cool
    Binney

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  • Nitocris
    Nitocris Member Posts: 187
    edited March 2013

    THIS IS GREAT!  Carol,  thank you so much for the amazing work you have done on these documents.  Much needed and useful information for both patients and professionals.  A big Thank You to SU-SO for initiating this project.  Ladies, you rock!Wink

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  • DC197
    DC197 Member Posts: 371
    edited March 2013

    Hi,

    I am new to this LE business having only mild LE in my right arm.  My surgery was in Nov. 2010 with 25 axillary nodes removed, followed by radiation in Jan/Feb 2011.  I started to notice occasional heaviness in my arm last Fall.  I began to wear my compression sleeve more regularly since then, and have my first appt. with a therapist on Thursday, March 7th.  I found these documents very informative.  Is there any additional advice that you may have before my appt?

    Diane

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  • LuvLulu07
    LuvLulu07 Member Posts: 778
    edited March 2013

    Thank you, Carol, and to all that contributed to this wonderful document!  This will benefit many - your huge effort on this is so appreciated.      

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  • carol57
    carol57 Member Posts: 3,567
    edited March 2013

    Thank you, ladies!  DC, if you didn't already, take some time to explore the stepup-speakout.org website.  You will learn SO MUCH about LE, including some very detailed information for you and for your healthcare providers.  The women who created this website designed it for all of us who need accurate, comprehensive information about LE. 

    It was a privilege to be asked by those amazing women to help out with the exercise document--an opportunity to return the favor after all the help they and the SU-SO site have given me.  Binney, Kira, and OneBadBoob, you are astonishing in what you have compiled for us.  If there were a Nobel Prize for LE, you would get it!

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited March 2013

    All hail Carol - what a fabulous job you've done!!! Kiss

    I've created a new thread about the docs in the Exercise section as well.  It's going to be such a great resource - as we all know there's so much misinformation out there about exercise and LE.  Some women are so petrified about LE that they are afraid to do any exercise, while others get no LE education from surgeons and unknowingly engage in extremely risky exercise behavior.  This document will help both groups, and everyone in between. 

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  • pat01
    pat01 Member Posts: 1,005
    edited March 2013

    Thank you Carol - these are wonderful to have.  I'm bubmbling my way through mild LE, and these are a great resource.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited March 2013

    Decided to bump this since Carol's work is always deserving of attention. I printed and will take these to the new drop-in yoga class my cancer center is starting this month.

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  • joybugsrider
    joybugsrider Member Posts: 1
    edited March 2013

    I have a question that I have not been able to get answered locally so hope someone out there can help.  I recently had a partial mastectomy and axillary lymph node dissection.  My surgeon tells me he took out 36!! nodes.  It was my understanding that he would take a few out to be able to determine if I had any metastisis (sp?).  36 was quite a few.  All of the nodes tested negative.  I am having some swelling in both my arm and the side of my booby.  The dr. doesn't appear concerned with this and has said that I will not need a compression sleeve until aftrer my drain comes out and possibly after treatment (radiation).  Is this not considered lymphedema yet?  It is extremely uncomfortable and occasionally painful.  He has suggested that I do not use the arm at all at this time and that at a later date he will set me up with physical therapy.  Any ideas? 

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  • purple32
    purple32 Member Posts: 3,188
    edited March 2013

     Is this not considered lymphedema yet?

    Some amt of swelling within the first few weeks of surgery is considered to  normal.

    Some parts of your post are  a bit confusing to me.  I have no doubt that others will come on with good  suggestions.

    For now, practice risk reduction ( NO BP, needle pricks, tight jewelry, repetive arm movements m, heavy lifting etc ..) and please visit the SUSO website.  Its the BEST.http://www.stepup-speakout.org/

    More info regarding your surgery date etc .... would be useful.

    Thanks and good luck to you !

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2013

    joybugsrider, at this point, it's very difficult to tell if your swelling is post op or early lymphedema--the researchers who study lymphedema take measurements in the first three months after surgery, but don't really know what to do with them.

    But, with surgery and radiation, and a complete axillary node dissection, you are at a higher risk of getting lymphedema, and for now, I'd baby your arm--but do elevate it on pillows and pump your fist, and I'd ask to see a qualified lymphedema therapist earlier--not later--to get measured and learn some preventive care.

    Here is a link on how to check out the credentials of a lymphedema therapist:

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    how to reduce your risk of developing lymphedema:

    http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

    And what to do while waiting to see a lymphedema therapist:

    http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting

    Oh, and breast and trunk lymphedema:

    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    And, feel free to start a new thread if you need to, because your post kind of got buried in a thread about these new papers on exercise, and the last thing we want to do is overlook it and not get you advice and help.

    Hope this is just post op and resolves, but I got my swelling early and was told it would go away after radiation, and that's an error in thinking--radiation can cause and worsen lymphedema, both acutely--with inflammation--and gradually--with radiation tissue changes/fibrosis. Early intervention will get you information and timely help and may prevent post op swelling from progressing to lymphedema.

    Please let us know how you're doing

    Kira

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  • GottaloveNED
    GottaloveNED Member Posts: 211
    edited March 2013

    Carol, thanks for your work on this. I forwarded the links to my LE therapist -she loved them and was going to print them to use as handouts!

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  • carol57
    carol57 Member Posts: 3,567
    edited March 2013

    Gottalove NED, that's really, really great!  Thanks so much for reporting back!

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2013

    MODS. I would like to see these guides put at the beginning of our threads and have them stay there. It just makes sense to do this as so many of us are misinformed by our docs/advisors/and also fitness instructors that have no idea.

    This info would be so informative to newbies and us oldies too.

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  • GramE
    GramE Member Posts: 5,056
    edited March 2013

    This is excellent - easy to read and language that is not confusing.   Pictures are great.    Super job.   Thanks.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2013

    MODS, can I second Hugz's suggestion about pinning this to the top, please? This is a question we hear so often here, and a real worry for both those of us with lymphedema and those who are at risk. (And by the way, thanks for all you do!Smile)
    Binney

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  • purple32
    purple32 Member Posts: 3,188
    edited March 2013

    Mods

    I'll " third" that if it helps - these  guides are priceless!

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited March 2013

    I went to a hula hoop fitness class demo at lunch today - it's not just hooping but has a lot of upper body work with the hula hoop.  I just printed out the Trainer document, and got there a few minutes early.  I introduced myself, and handed the document to the instructor.  While nodding towards my compression-clad arm/hand, I briefly said that I might not be doing all the upper body work and may need alternate moves, and this document will explain more fully.  Done!  I didn't have to take up a lot of her time with explanations, and she can take it home and read it at her leisure and refer to it later as needed.  It was perfect!

    Yes, it would be great to have this pinned to the top. 

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2013

    Natsfan. Good show using the guide. Isn't hooping fun. I have two hoops one for me and one for my buddies to use when they come over.  It really loosens up that lowerback. Chiro says it is excellent for that.

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  • carol57
    carol57 Member Posts: 3,567
    edited March 2013

    NatsFan, hooooray!  Makes the project really worthwhile!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2013

    Carol, just heard from the LE PT who is the AWS guru, and she wants the handouts, so I sent them. She's amazing, and will spread them widely. She is a Klose instructor also.

    You and your consultants have created such a helpful tool for all of us. Thanks!

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  • purple32
    purple32 Member Posts: 3,188
    edited March 2013

    Carol

    The YMCA in my area has a new VP , and  the trainer is setting up an app. with him/us to meet .  I had asked your permission to print off  the EXERCISE GUIDELINES from the SUSO site, whiuch I did.  Before I meet with them, I would like to clarify again since I was just on the site looking at something else and saw the copyscape warning.

    Is it okay to take the exercise  doc to LIVESTRONG or ?

    I could have PM'd you, but I thought this could be an issue in the future with oithers.

    Many thanks for any response!

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  • carol57
    carol57 Member Posts: 3,567
    edited March 2013

    Purple, I believe SUSO has the copyscape warning to help prevent copying and pasting site page information without attribution to SUSO, or worse, taking parts of the wonderful SUSO content and mixing it with inaccurate information, giving the impression that SUSO somehow endorses bad information. But the pdf documents are meant to be downloaded by whoever can benefit from them. A serious document hacker could pick them apart, and anyone can retype information with or without attribution, but most folks would use the document as-is, and SUSO is identified on each page. So, I am sure that the SUSO directors agree: download and share, please! They asked me to lead this project for exactly the kind of opportunity you have, i.e. to reach trainers and other fitness professionals with LE info.



    Carol

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  • purple32
    purple32 Member Posts: 3,188
    edited April 2013

    OK Carol- that is wonderful!
    Thanks  to you and all who contributed for such generosity in sharing. I can only imagine how far this type of a document could go.

    I'd also like to thank this opportunity to thanks evrertyone involved in the SUSO site.  I know kira, binney, onebadboob, Lindalou and many many others all had a  hand in this at one time or antoher - an enormous and invaluable undertaking.


    It IS appreciated !

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  • geewhiz
    geewhiz Member Posts: 1,439
    edited April 2013

    This is AWESOME! Im taking it into my yoga studio tomorrow! Thanks to all for this gift!

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  • carol57
    carol57 Member Posts: 3,567
    edited April 2013

    And....stay tuned for an updated version soon! A very helpful lady --an OT who sees BC survivors in therapy, and who also teaches Pilates--sent some additional material to expand the Pilates section.  We're getting some absolutely wonderful responses from people who have read the exercise guide and are suggesting some improvements, which are most welcome. When the new version is on the SUSO site for download, I'll drop in a note about that, here.  Meanwhile, Purple, please do use what we have with your LiveStrong contacts.  And let us know what they think!

    Geewhiz, I'm tickled pink that it will go with you to yoga class!!

    Carol

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  • purple32
    purple32 Member Posts: 3,188
    edited April 2013

    Fabulous, Carol!

    Yes, it's been tough coordinating this appt. with  3 others at the Y, but when we *finally* meet, you will be the first to know!
    THX

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  • carol57
    carol57 Member Posts: 3,567
    edited April 2013

    The exercise guidelines for trainers and for BC survivors have been updated, and I just changed the links in the original post here, so they go to the new document versions.

    The new version of the trainers' guidelines has more information about Pilates. A lovely person whose website is recovercises.com, and who is an OT and a Pilates instructor, provided a very helpful 3-phase program of Pilates after BC surgery. She and our other wonderful Pilates contributor, Joyh1109, worked together on some additional suggestions.  The second document, the more concise handout for BC survivors, has a few changes, too, although these are modest.

    We've heard from quite a few people who have the documents and find them helpful, and I hope that lots of us will put them in the hands of gym managers, personal trainers, and fitness instructors.  Oh, and nurses and doctors and LE therapists...anything we can do to raise awareness not just of LE and exercise, but of LE, period!

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  • carol57
    carol57 Member Posts: 3,567
    edited April 2013

    Bumping for Anne

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited May 2013

    Don't know if this has popped up on another thread, but the May newsletter from Solaris has a big article on exercising with LE - based on SUSO and the exercise guidelines, complete with links to the guidelines on SUSO. 

    http://us1.campaign-archive1.com/?u=f32ccbc68d12fdd1d9d6c6249&id=59b9fec750&e=8576880ce4

    Gettin' the word out!!!

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