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Bike Riding and Lymphedema

Teal3Pink1
Teal3Pink1 Member Posts: 57
edited June 2014 in Lymphedema

I had mild LE post-lumpectomy in January which resolved by the end of February (before appt with PT to get instructions for exercises and self-massage). I finished boosts early last week and was on my bike yesterday for a short (12 mile) flat ride wearing a compression sleeve that PT ordered, however it feels like the LE is returning and I have a call into the PT's office for further instructions.

In the meantime, just the thought that it might not be possible to continue to enjoy bike riding, which is my primary source of exercise, is starting to get me depressed. Any bike riders out there have any tips on how they manage lymphedema and continue to ride?

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Comments

  • kira
    kira Member Posts: 659
    edited May 2011

    Annie, do you wear hand protection as well? Glove or gauntlet--it's usually recommended.

    I am not a regular bike rider: but ride a recumbent bike for indoor in the winter. My husband is a serious bike rider, and he rides a recumbent bike (a maxarya) as his hands were getting numb and he's a dentist. Women who ride have recommended raising the handle bars to put less pressure on your arms.

    Hopefully, wearing the sleeve (and hand protection if needed), a padded bike glove, raising the handle bars and limiting your initial rides will get you back out there. And, consider a recumbent bike--my husband's is not extreme--the pedals are still below his seat--and it's highly engineered so you can do hills with the little front wheel.

    Hopefully more serious bike riders will chime in.

    LE limitations stink--often there are ways to work up to a former activity.

    Kira 

  • binney4
    binney4 Member Posts: 1,466
    edited May 2011

    Annie, I agree with Kira that there are ways to get back to biking. We even have some bikers with lymphedema here, and I hope they'll see your post and offer their experience. BUT -- while you're waiting to get into therapy you might want to hold off on riding so as not to worsen your situation. Stay really well hydrated, elevate your arm whenever possible, and do some deep abdominal breathing from time to time.

    Here's information on how to find a fully-qualified lymphedema therapist near you. With your special interest in keeping on with the biking you need and deserve someone well-trained and experienced:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Keep us posted, Annie -- and let us know how we can help!
    Binney

  • Teal3Pink1
    Teal3Pink1 Member Posts: 57
    edited May 2011

    Thanks Kira and Binney! Great info! I will definitely stay out of the saddle until I see the specialist!

    Fortunately, the PT did discuss my biking and air travel at the initial consult in early March and insurance has approved custom sleeve & gauntlet (to be fitted and order 8 weeks post-rads). In the meantime, I wore just padded bike gloves w/the compression sleeve that I already have from the last visit. I wasn't sure if it was okay to put the sleeve back on when the upper arm started to swell a little bit.

    Taking a real deep breath right now. I have been stalling making vacation plans b/c I am terrified to fly, especially if a little bike ride could bring the LE back.

  • kira
    kira Member Posts: 659
    edited May 2011

    Annie, you are a brave woman: it took me a good couple of years to venture on a plane again. You might want to wait until you've seen the LE PT and have your plan in place, but you'll be flying in no time--with a sleeve/gauntlet.

    There's an NLN position paper on flying:

    http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm 

    On the same page are position papers on exercise, treatment and training of LE therapists.

    Kira 

  • Teal3Pink1
    Teal3Pink1 Member Posts: 57
    edited May 2011

    Kira, thanks for the link! There is so much great information out there!

    I spoke with my PT yesterday and apparently I overdid it this weekend. Should have started out much more slowly--15 minutes MAX. (That's about 3 miles, which is really just a warm up...) Thank goodness the LE is very mild. I can wear the sleeve as long as it fits and continue with the exercises and massage. If things improve, I can try a 15 minute ride on the weekend and build SLOWLY from there.

    Would LOVE to hear tips from regular bike riders.

  • kira
    kira Member Posts: 659
    edited May 2011

    Annie, we have this amazing bike path near our house--26 miles on old railway right of way, by the ocean, my dh really wants me to join him again. So, I may have some insight soon.

    Kira

  • Teal3Pink1
    Teal3Pink1 Member Posts: 57
    edited May 2011

    Kira, the bike path near your house sounds amazing! Sounds like a lovely ride!

  • nurseronda10
    nurseronda10 Member Posts: 109
    edited May 2011

    Teal3Pink1, I love cycling too but have not ridden since being diagnosed with BC.   I started running again about one month ago.  My LE therapist told me running tends to flare LE less than biking.  She suggested that I wear a sleeve and glove with 30-40 mm/Hg compression while exercising, gardening, etc. I wear 20-30 mm/hg sleeve otherwise.  She advised against doing any weedeating whatsoever.   I waited until I got the custom glove before I did any running or weight lifting.  So far those activities have not aggravated the LE, but today I sprayed fence rows with  brush killer and tilled up the garden and tonight I noticed some redness and swelling in my lower left side.  Tilling and weedeating probably fall in same category....probably bad decision on my part to till.  So now I am wondering how far can LE spread.  I have had LE all along in my upper back on the side and a place about 4 inches below my mastectomy scar and also very small amount above elbow.  My biggest problem area all along has been edema in my thumb and wrist that I finally got under control with the custom glove.  I am anxious to start cycling again.  She advised using aero bars.  My husband and I are wanting to do an organized ride the end of this month.  If I go I will do the 20 mile ride.  I guess I need to go back to my therapist about the truncal LE.  I am so noncompliant with the MLD mainly because I just don't see how it could help that much.  Can LE from BC eventually travel all the way down the trunk to the legs??  It's a nightmare having to deal with this crap everyday.

  • kira
    kira Member Posts: 659
    edited May 2011

    NurseRonda--the swelling and redness could be cellulitis--please get it checked out.

    Your entire quadrant is "at risk"--but lower left side is below the quadrant.

    Totally agree with you that it's a nightmare to deal with this every day, but I don't want to see you getting an infection that's not treated.

    How are you today?

    Kira

  • nurseronda10
    nurseronda10 Member Posts: 109
    edited May 2011

    Kira, today it's more of a light pink, same color as the LE in my upper left back and area below mastectomy incision.  Do I need to start wearing some type of truncal compression garment when I am gardening, exercising, etc?  I have always been very active.  We have 41 acres to take care of, so besides my full-time job as a nurse, I spend a lot of time outdoors on my days off doing something.  I will not give up my life for LE but I don't want to swell up like a goodyear blimp either.  I will get an appt with LE therapist and see what she thinks.

  • kira
    kira Member Posts: 659
    edited May 2011

    Nurserhonda--it you have truncal LE, you'll want to compress it when active--here's a link to a stepupspeakout page on truncal LE

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

    At the bottom of the page is a link to the full article in Journal of Lymphoedema on breast/truncal LE.

    Kira

  • Teal3Pink1
    Teal3Pink1 Member Posts: 57
    edited May 2011

    Nurserhonda: Thanks for the info. I will definitely look into aero bars. You are right--dealing with all this is frustrating! I sure hope you get to go on the bike ride later this month. Please don't be like me--start out slow and build up to the 20 miles!

    Kira: Thanks for the helpful links!

    What really ticks me off is that I had 21 lymph nodes removed for ovca surgery in 2004 and did not have any problems with LE. Yet, I got LE from Lump/SNB. It was only 2 nodes, but one was a freaky triplet so my surgeon said the official count is 4.

    Grrrr.  Just one more thing to deal with.

  • kira
    kira Member Posts: 659
    edited May 2011

    Annie, It does stink to be on the wrong side of the statistics--I only had three nodes out. They quote a 7% chance with SNB, but if you add rads to that, and the fact that there is no one diagnostic criteria for LE--it's clearly higher: closer to 10-20%.

    No matter how low the probability, when it happens to you, it's 100%.

    But why couldn't we be in the majority? Just not fair.

    As Suzy says: LE sucks like a hoover vacuum cleaner.

    Kira

  • nurseronda10
    nurseronda10 Member Posts: 109
    edited May 2011

    Kira, thanks for link-very informative.  Will try to be more compliant with MLD.  

    Teal3Pink1, sorry you have had to deal with cancer twice.  

    I am wanting to have reconstruction this fall, but now am wondering if another surgery will disturb things even more and make lymphedema worse.  Anyone had reconstruction while dealing with LE? 

  • Teal3Pink1
    Teal3Pink1 Member Posts: 57
    edited May 2011

    Kira:  Yes, major suckage to keep ending up on the small side of the stats. Love love love what Suzy says--I'm going to start using that! Cancer Hoovers.

    Nurseronda: Thanks. A second primary while still in my 40's really Hoovers. I feel like such a freak b/c I tested BRCA negative. Good luck with the reconstruction. One more thing to worry about and waiting can be tough. I hope things go well for you and that it doesn't contribute to more LE.

    My arm is tingly.  Better get on the compression sleeve or I won't be able to try a 15 minute ride tomorrow. And no heavy chores today. Hmmm, is this my silver lining? Permission to take it easy and relax and read my book?

  • kira
    kira Member Posts: 659
    edited May 2011

    Annie, any positive spin will do. Soon I'm going to start a thread with quotable lines from Suzy. There are so many.

    I fit some of the profile for BRCA testing--below fifty, Jewish--test negative, but participated in a NYU study looking for other genetic markers--had to spit into a test tube.

    Enjoy your book and your ride.

    Kira

  • lrgobx03
    lrgobx03 Member Posts: 1
    edited May 2011

    hi new to this do you need to support your arm my arm is heavy and dont know if i could hold ont a bike bar that long

  • binney4
    binney4 Member Posts: 1,466
    edited May 2011

    Irgo, hello and welcome!Smile

    Heaviness in your arm can be an early warning of fluid build-up even before any swelling is visible or measurable. You'll want to insist on a referral from any doctor on your team for evaluation (and treatment if necessary) by a fully-trained lymphedema therapist. Here's how to find one near you:

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

    In the meantime, elevating your arm as much as possible, staying well hydrated, and not stressing your arm will all help keep things in control until you can see a therapist.

    Please do keep us posted on how you're doing.

    Be well!
    Binney

  • faithandfifty
    faithandfifty Member Posts: 4,424
    edited May 2011

    I love to see biking being brought back to the foreground around here.

    As my cycling season approaches in a couple of weeks.

    Not to be a "downer" but last summer my cycling was kept to the absolute of minimums. I used very good sense and started with little wimpy 15 minute segments on very flat terrain. I always wore my compression vest, compression sleeve and gauntlet.

    I was able to build to an hour's worth of riding, but still had to keep myself to the flatest of all flat routes...... which basically meant I could go round and round and round and round our little summer village and never got off into the hill country that I have loved biking the previous five or six summers.

    Let me clarify that last summer I was still in the midst of clearing my cellulitis and having my hemotoma drained regularly and thawing a frozen shoulder -- so all things considered, I suppose getting to go on the merry-go-round of flat routes was a good baby step toward reclaiming my life.

    My shoulder has thawed. My cellulitis has not reared it's ugly monsta self again and it's been nine months since I've had to had my chest drained at the hemotoma site.

    COULD THIS MEAN I CAN TACKLE AN INCLINE????

    Inquisitive minds want to know.

    Teal. It is such a mental and psychological challenge to find genuine and real "limitations" that are wrought by the LE complication.

    The good news?

    You are not alone.

    There are brilliantly funny, engaging, wonder-women here who will listen to rants of frustration and anger and offer witty encouragement as you sort through what your body is capable of doing.

    Here's to taking it one step at a time and listening to your body's advice.

    Hoping that you are able to get yourself back out on 'real' rides directly.

    xx00xx00xx

  • Nordy
    Nordy Member Posts: 1,106
    edited May 2011

    Teal3Pink - I sent you a PM.

    The good news is that you CAN ride with lymphedema, but you will have to take some extra precautions both during the ride and after. Stay well hydrated. Change hand positions if you have drop handlebars. If you have flat handlebars (and even with drop ones) take your hand off frequently, stretch the arm back and overhead, make a fist and then open your fingers several times to help move fluid. Wear your sleeve during and after your ride!!! I don't wear a glove or gauntlet when I ride but: A.) I don't have much hand swelling anyway and B.) I wear cycling gloves which help minimize swelling. Wear sunscreen! Use good posture on the bike - shoulders back and down and use your "core" (trunk muscles) to hold the majority of your upper body weight so that your arms aren't taking the brunt. If you aren't riding hard enough to increase your respiratory rate, then you need to make sure you do some deep breathing during your ride. This will help to clear your deeper nodes in the trunk and create a negative pressure effect to help pull lymph fluid proximally (toward the body, away from the arm). And with this last piece of advice - I am sorry... but expect to have at least some exacerbation from riding... If you don't have any - then you will be so happy! But be prepared to have some. If I am just doing one of my normal rides during the week (anywhere from 18-30 miles - all include hills because I can't leave my house without doing a hill!) - I know that I probably won't see much change. If I am pulling my 2 kids in the trailer or doing a longer ride, I expect to see some increase. I know to plan on doing some extra MLD, wrap at night (not too tight!!!) and maybe even use my Flexitouch for a day or two to bring it back to baseline. BUT, I am willing to do these things in order to continue to do something that I really, really love. I always tell my therapist (and she agrees) that there has to be some quality of life too! 

    Good luck ladies!!!

  • Teal3Pink1
    Teal3Pink1 Member Posts: 57
    edited May 2011

    Irgo: Good luck! Please have your arm evaluated--the sooner the better!  I felt silly and almost canceled my appt when I saw my PT for the first time before rads b/c the mild LE post-surgery had mostly resolved and my arm looked normal. (It took a month to get an appt after my MO's fellow diagnosed it!) My PT was glad to get baseline measurements and teach me what to look out for going forward.

    FaithandFifty:  Thanks! That is great advice: listen to body and one step at a time. I always want to jump ahead and that always gets me into trouble. Wow, you've been through a lot!!!! Sounds like you've battled lots of uphills off the bike. I hope you get to ride off the flats soon.

    Nordy:  You are awesome! Thank you so much for all the great detailed information and guidance!! I do need to work on my core and posture and I'm sure that will help a lot. Also, love your Yoda quote!

    It is such a challenge to figure all this out even with mild LE. I listened to my body and decided to wait another week before trying to ride again.  Hearing your stories gives me confidence that I can manage this and continue to ride, too!  

  • revkat
    revkat Member Posts: 122
    edited May 2011

    Nordy pretty much covered all the bases, but I'll add that I do wear a glove (and sleeve) when I ride, plus the biking glove. Finding a biking glove that fit well over the LE glove and provided good cushioning for my hand was key for me. I have a mountain bike (DH boght it for me while I was doing chem, I had never expressed an interest in mountain biking.) but I do mostly road biking to train for sprint triathlons. I move my hands around to different postions a lot and stretch and pump my arm periodically. I do go up significant inclines (our town is build on a slope) but I don't notice that it adds much stress on my arms, I focus on using my legs and not pulling and I stay seated. And if I don't leave the sleeve on for a while after I'm done I do get more swelling. 

  • Teal3Pink1
    Teal3Pink1 Member Posts: 57
    edited May 2011

    Thanks, Revkat! Good to know that it is possible to find a riding glove to fit over LE glove--IF it comes to that!  Hope to build up fitness to tackle inclines in the future! Great to know it can be done!

  • Nordy
    Nordy Member Posts: 1,106
    edited June 2011

    Just wanted to update: I rode Saturday in the MS Century (100 miles) in Utah/Idaho - temperature upon rolling across the finish was 95 degrees. I had zero increase in my lymphedema. ZERO!!! I actually wore my Lymphediva YSC sleeve - which is not always the best because it can cut me at the elbow crease, but where I was going to basically have my arms extended for most of the day, I thought it would work perfectly. It did. I actually had several comments and one girl thought it was an arm warmer and wanted to know where I got it. It was so much fun. Lots of changing arm positions, lots of reaching up to pump my hands... lots of deep breathing trying to keep up with my team... LOL! Great time! So... again, YES you can cycle with lymphedema!

  • BeckySharp
    BeckySharp Member Posts: 465
    edited June 2011

    Hey Nordy--you rock!  Great it went so well. 

  • DebRox
    DebRox Member Posts: 141
    edited June 2011

    Oh no. I can't weight lift, so this weekend I went mountain bike riding, with quite a few inclines, but not as intense as I'm used to. I thought since I can't workout my upper body, I'd work my legs and heart.



    I didn't wear my compression sleeve either. I don't have swelling, but my arm feels achy I think or my tricep is sore. I can't tell.



    I guess Im going to call the LE specialist. I need to ascertain if she dxd me with LE or predisposed. I went because of painful cording, I do have full range of motion. But the cording is painful.



    I feel so robbed right now, I'm in the middle of chemo, wanting to maintain my muscle mass and feel good about myself. I normally train like an athlete and now I'm a couch potato, other than hiking. I'm sad. :(

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
    edited June 2011

    Nordy.....major congrats on the Century.  Way to go.

    I don't have lymphedema, and cycled ten days after my lumpectomy (with my drain!).  My surgeon said OK when I asked, so I did.  I have been cycling ever since other than during ski season.

    The big sunscreen area I want to mention is the BACK OF YOUR NECK!  I have to force myself to remember this one as had very long hair prior to this whole experience.

    I am doing the Seattle-to-Portland in two weeks.  Really hoping my ankle is healed by then as banged up and swollen.  Wiped out about 10 days ago.  Took it very gingerly over the weekend so was able to get in a couple of easy training rides.

    Anyway, thought of all of you when I wrapped up my ankle on Saturday.  Have a nice support now which works really well.  So much better than the old Ace bandages did.

    Just so wonderful being out there tooling around and seeing the sights.  I get sensory deprivation when I don't get out in the air and sunshine.......and scents of flowers and manure, or crisp, fresh air or fruit.  So much a part of my life.

    And my brain works ever so much better when it gets all that oxygen!!! - Claire

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
    edited June 2011

    DebRox......I cycled throughout chemo on weekends.  On week days, I did my weights/crunches and walked a minimum of one mile.  That preserved my muscle mass.

    I would have gone nuts otherwise.  I was not able to cycle any really strenuous hills, and was a lot slower than normal, but I was able to cycle.  I even did the short course of the Chilly Hilly.  I walked most of the hills.

    So you may need to do flats and not mountains.  I remember towards the end of AC, when cycling in the rain on an easy bicycle path, reminding myself that "90% of the US population can't do this".

    One year past raidation, my stamina and speed are better than ever.  I have done "personal best" training rides.  So thrilled to be there, and a critical step in the path to my new life. - Claire

  • DebRox
    DebRox Member Posts: 141
    edited June 2011

    Thanks for the response Claire.  At this point, I do not have a problem with stamina - in fact I out rode my HB on Saturday which felt pretty good as I am competitive :), it is my arm that is holding me back from many activities I normally participate in pre-BC.

    I have a call into the LE specialist to ask about bike riding now.  I had 1 lymph node removed. albeit a 2 cm workhorse and major problems with my arm - so very frustrating.

  • kicks
    kicks Member Posts: 319
    edited June 2011

    I wouldn't really call myself a bike rider but I do ride my bike at least every other week for a 15 mile circuit of the bike trail along Rapid Creek (weather permitting).  My Drs and my Lymphodema guy all say to do anything I feel like or want to do as being active is better than inactive.  Actually it seems like I have less problems the more I do which is quite a bit.  We have horses so I'm always doing something with them and I mow my yard every 3 days.  Actually, for me, the vibration of the mower running will help reduce the swelling if it's a bad day for it.  I have a fair bit of problems with the edema and never and without either my day garment or night garmnt on  and have to run my FlexiTouch daily.

     Of course if your Drs or other specialists say not to but for me I'm not about to give up doing 'things'/living because I might have an issue - far better to be fit and happy and deal than depressed from doing n othing enjoyable.  How I feel about it.