Bike Riding and Lymphedema
Comments
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There's a new section on the StepUp-SpeakOut page about bike riding and LE (thank you to so many of the women here for their expertise!) Go to the "Coping" page and check the list on the left-hand side for "Bike Riding and Lymphedema":
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htmI think there's a big difference between coping with exercise when you already have lymphedema, and starting back to exercising after treatment when you don't yet have it and want to prevent it. If you have lymphedema, wearing day and night garments, wrapping your arm and hand, doing self-massage and using a Flexi or other strategies to control lymphedema is a choice you make individually depending on how your own lymph system functions. If something you do creates a flare you have the tools to deal with it.
But if what you're trying to do is prevent lymphedema issues down the road, then getting the help of a well-trained lymphedema therapist early on is a huge help. S/he can do baseline arm measurements for future reference, fit you for compression garments to use prophylactically for exercise and travel, and teach you a simple lymph massage that can help stimulate your remaining lymphatics. S/he can also guide and monitor your return to exercise and give you the information you move ahead confidantly. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmBe well!
Binney0 -
Nordy: Congrats on the Century! In the heat, even! You are a stud!
DebRox: Please remember to be kind and gentle to yourself. It's normal to want to stay active, but your body is going through a lot and it's okay to take a break and recharge your batteries.
Claire: Thanks for the reminder on sunscreen. I am always forgetting!!!
Kicks: You are amazing for mowing the lawn! What a great way to get good vibrations!
Binney: Great info!
I've been on vacation in Montana and did well on my first airline flights with compresson garments. It's been a while since I've had a chance to ride b/c the weather wasn't cooperative on the weekends before the trip. Going to the Ovarian Cancer National Alliance conference in DC this weekend, so I have to wait just a little bit longer to get my wheels under me! Can't wait!!!!!
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Great thread, glad I found you all!
Hi Nordy! What is a YSC sleeve and a flexitouch??
I ride (I think?) 12-20 miles typically, (between 60-90 minutes) and I did notice this last time some trunc/breast LE - 3 days in a row may have done it, and very hot here in NC. I wear a sleeve and I wear an under armour compression T. It helps a LOT. My flairs are in my trunc and breast area, so discovering the compression T was a real breakthrough for me.
I am going to do more arm flexing, overhead, pumping, hand stuff as Nordy describes on my next go. Maybe tomorrow! (Raining right now).
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Hi, I'm a serious cyclist--raced for 15 years, do regular long training rides of 30-50 miles--and have some lymphedema in my arm. (And I live in NY ... maybe we've passed on 9W?) I didn't really realize I had lymphedema until I saw a photo of myself in a race 2 years ago, and I could see my right arm was visibly swollen.
After seeing the photo I started wearing one of the light compression sleeves when I ride. It was hard to get used to wearing the sleeve, I'd get SO depressed before a ride. I just wanted to be normal and feel the breeze on my arms. But you can buy the sleeves in different colors, so I bought some white ones for summer, some black ones for the cooler weather, and wear them on both arms. I've noticed a few cyclists wearing white arm warmers in the hot weather, it's starting to be a bit of a trend, I think people are wearing them as sunburn protection. You'll notice a lot of Dominican guys wearing them, it's more common with that set to cover up. (I rode the wheel of an ex-racer from Columbia this past weekend and he had a long-sleeved jersey on, in fact.)
The sleeves are very light. Too light to be real arm warmers, in fact, in cool weather. In the heat, if I keep moving, they're fine. They're only really uncomfortable when I stop and don't have the air moving over my arms. At first I was self-conscious, I thought others could tell they were surgical, but a few people have asked me why I'm wearing arm warmers, so I guess they blend in. Sort of.
A friend of mine took three guesses before he realized I was wearing compression. A lot of cyclists wear weird stuff, plus a lot of tri people nowadays are wearing compression. So maybe I just look eccentric. When I get home I shower with it on and let it dry on my arm, I'm going to ask my therapist whether that's a good idea or not.
I would say I think the sleeve has helped my arm. It seems a little better in my clothes. I'm not bandaging at night because my hand feels stiff and with the gauntlet it's even worse, it swells at night.
I am taking shorter rides than I was before. If you live in NY you'll know what I mean when I say I'm riding to State Line or Piermont vs. going to Nyack. Mostly that's because I'm trying to get out in the cool of the day and get home before it's really hot, some of it's because I'm riding alone and would rather do a shorter harder workout and go home. But I'd like to go down to Philly or NJ and do a gran fondo if I could get my mileage up, I'm just cautious because of the heat. I never liked the heat even before lymphedema. But I don't take any precautions as far as how hard I ride. This weekend I did high intervals all along 9W. I'm working my arm a lot on the climbs. My lymphedema arm tends to be my dominant arm when I stand.
I've noticed I'll have a lot of aching pain in my chest and arm after a hard weekend of riding. It may be the lymphedema, but I'm blaming the implant. I really HATE it and plan it have it removed in a couple months. I'm just trying to decide whether I want a DIEP or to go flat. I'm in the process of talking to different surgeons about the node transplants, and am asking them, too, if just taking the implant out and cleaning up the scar area may help the lymphedema.
The main reason I'm asking about the transplants is so that I never have to wear one of those #$% sleeves again when I ride. However I am not giving up cycling because of the lymphedema or the sleeve. Cycling's too much a part of my life.
Sorry for the long ramble. But that's how I deal with the whole thing, so far.
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I'm going to weigh in on aero bars. Doesn't sound like a great idea to me. In bars you're putting all the weight on your forearm. More weight then is normal. Without them, there may be weight on your hand, but you can remind yourself to relax your grip and shift your weight to your other hand.
More amateur cyclists, and the non-riding public (which may be the case of the PT) think that bars are for comfort and give you a great way to relax during a ride. That's not their purpose. Aero bars are for going really hard and fast in a time trial. The position is fairly uncomfortable. If you're not racing in a time trial, or not training for a time trial, you don't need them. They are really for high-performance and not at all for comfort.
There are three hand positions on a road bike: in the drops, on the brake hoods, and on the top bar. The top bar is the most comfortable, relaxed position. On a long ride you want to be able to alternate between all three. Aero bars eliminate the top bar position and make the other positions more awkward. Plus, they put extra weight over the front wheel, which is the most unstable area of a bike, and make the handling twitchy and unstable.
But for the discussion of lymphedema, my opinion is that they're the wrong solution, because of the extra weight on your arm.
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Hi Kris,
9W......I'm impressed. I get what you mean by going out early as lived in Northern Westchester for a long time. I used to do the North County Trail which has a ton of shade. It runs from Millwood to Carmel so about 35 miles end to end. However, requires that you get there.
What about Harriman State Park? Think much more scenic than 9W, but not quite the climbs. It's cooler on top than right next to the Hudson River as well. BTW - the Tri-State is coming up. Starts in Millerton with three routes, one of which goes over a mountain. (One time I sagged up a mountain, and got scared to death going down a road with loose gravel along Bash Bish Falls.)
A fun outing is to join (I forget exactly which club) in mid August for a tour of Block Island. Not that strenuous, but just so gorgeous and minimal traffic. You go to Point Judith and take the ferry over. Really a hard day trip, but it can be done. So worth it though.
You can do a swim at the end. Then clams on the Point Judith side. The best ever!
Enjoy the rides. I just finished the Seattle-to-Portland so am in recovery mode. My left foot/ankle are what are swollen as injured three weeks prior. Leading my first ride this weekend. Easy 20 miles which I am billing as a "Post STP Recovery Ride". This one will be long on scenery and short on exertion as takes about 2 weeks to recover fully. - Claire
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Kriserts,
I had implants and hated them, I then got a DIEP/GAP stacked in NOLA. I felt immediate relief once the implants were gone, just wanted to share that. However, it did not make any difference in my trunctal LE -- no improvement for LE, but LOTS of improvement just getting the implants out from under my pec muscles.
Let us know what your PT says about showering with the sleeve and then leaving on. My LE therapists have said you can take the sleeve off as soon as your heart rate goes back down. I was told after a plane ride, take it off 1 hour after the flight lands, (get your luggage, get to where you need to be, take it off.) After exercise, they told me I could remove it as soon as my heart rate returns to normal. I often wear it longer for good luck, I guess! I know they like you to remove them when sleeping to avoid "skin issues".
I also did not wear my sleeve right away, I was either in denial or also depressed that my body was injured -- I was also mad that my nodes were healthy and removed and now I have these issues. I wish there was a way to tell what nodes need to be removed. This removing healthy nodes and then LE complications after is barbaric, if you think about it. I was watching stem cell reserach on the news the other day and said to DH, "I want them to grow me new lymph nodes!". I only last 3 and was told by the surgeon I would not have any issues. That was not correct! My issues are not severe, but it is the constancy of it that bugs me!
Dr. Marga Massey (google her) has done some breakthrough stuff with LE and node transplanting (she also works in NOLA and I met her in person, a really great lady). but I am not sure they would venture into surgical options for those who can control their LE with conventional methods. I would be interested to hear what you find out about that as you research.
I also wear an under armour compression T when exercising - and this has helped a LOT with the truncal LE. Huge. I wear them really tight, and often inside out, (if wearing something over it) to avoid the side seams.
I also hear you about not wanting to wear the sleeve(s). I personally wear flesh colored ones so it just blends in as much as possible. I would not want to wear on flashy one and have people ask me about it. I think wearing on both arms is a great idea, except mine really squishes and I don't really want to squish both arms!!
I guess it's a journey! Thanks for sharing yours.
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Sprintime, did you find the DIEP affected excersise at all? I know it's "only" fat, but I'm worried about affecting core strength. Also about not being able to pedal as hard, ultimately. (My main hesitation with the DIEP is I have clotting issues, but that's another story.)
I do know about all those people and have talked to them. I spoke to Massey's nurse over the phone. I met with Dr. Allen, who was willing to do the node transplant, no problem ... but that worried me at little, how blase he seemed about it. Today I'm seeing Dr. Chen who was in the NY Times a couple weeks ago.
Thanks, Claire. I've cycled up to Bear quite a few times. And I did STP a few years ago.
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Kriserts, let me know what else you find out about the node transplant. When I mentioned the idea to an LE therapist locally, she thought it was nuts to mess with lymph nodes that could possibly impact the leg (said that type of LE was much worse than the arm!) But who knows. I wish I could regrow lymph nodes with stem cells!! is this too wild a thought?? We could irradicate LE!!
This may sound like a very personal question, but do you have a flat butt or a nice plump one? GAP could be an option for you if your backside is full. That would avoid any "core" stuff.
I am not a typical DIEP patient because I also had core muscle plication in stage 2, and that impacted my core for some time, but now, it may actually be better than it was before. (2 pregnancies had separated those muscles prior).
I can only tell you that whatever I went through to get to here was worth it to me to get the implants out. I had pain and some limitations on range of motion that I have pretty much resolved now since the implants have been removed. No regrets! Good luck to you....
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Ahhh... I have been gone for a LONG time!!! As far as cycling in NY - I just got back from LI and Westchester County... too, too hot!!! OMG. I used to live on LI, I had forgotten how humid it is in the summer (and I live in the Pacific NW - humid, yes, but not nearly as hot). I stepped off the Airtran at JFK to pick up my rental car and immediately began dripping sweat out of every crevice! BUT I had a great time catching up with all my friends, taking my kids to Mary Poppins and attending a wedding and then a brunch at West Point. Gorgeous!!!
Okay, so back to cycling - I agree about the tri bars not being very good for lymphedema - all that weight in a dependent position all the time. And if someone is not used to changing position from that tuck - it could easily cause imbalance and potential crashing! Yikes! I love being able to change position whenever I want... and the tri's I do are only sprints (& I am not exactly a top 10 finisher... LOL) - so I am not in the saddle long enough for it to really matter - in that case I just stay in the drops if I need to be tucked. My hubby does Ironman races however, and even he doesn't use his tri bars... Then again, he isn't trying to win, simply to finish!!!
As for those who are not yet diagnosed with LE - I agree with Binney to consult a good PT/LE therapist who can help you monitor your arm, fit you with a compression sleeve that you can use for exercise if necessary and help you identify signs/symptoms of LE. I already have LE, so it is a mute point as to whether or not I am going to wear a sleeve - it is a necessary evil. I used to wear the flesh colored ones all the time - like Spring, but these days I just say, "the h*ll with it" and wear as funky as possible. The sleeve I was talking about that I wore on the MS ride is the Lymphediva's Young Survivor Coalition sleeve. It fit in perfectly with my teams hot pink & black zebra print jerseys. I will have to see if any of the pictures show it. I have had pictures taken on so many rides that I never buy - because I hate seeing that ugly, fat arm with a medical sleeve on it. Maybe this time I will buy one.
As for the DIEP - please check into the Drs. at the Center for Restorative Breast Surgery. Dr. Scott Sullivan also does lymph node transfers (New Orleans - the Center above)... as does Dr. Jay Granzow out of Torrence, California. I am still on the fence with lymph node transfers because of the potential for a lower extremity lymphedema... although they say the risk is small - it is not zero. And for ME, anything more than zero is too much. However, I will say that I continue to search and will let you know if I find anything that I would try... LOL... and I would try a LOT! I agree with Spring - when, oh WHEN will they grow lymph nodes out of stem cells in a petri dish and then be able to transfer them into a human axilla??? I banked my daughter's cord blood... hoping that she will never need it and maybe they can make me some lymph nodes someday...
Anyway, DIEP should NOT affect your core strength if it is done properly by someone with a ton of experience. The docs at the center have done thousands. Beware of any doctor that tells you that you "may have to switch to a TRAM during surgery". That is a line of manure and experienced docs will never have to do this. I had hip flaps - taken from the love handle area - I have no issue with glute strength... lol, because they do not utilize muscle. They tweeze through it to get to the perforators. An experienced doc does the same with DIEP. Keep researching and searching until you find a doc that you feel comfortable and confident with. PS - I had failed tissue expanders that left me with a concavity on the radiated side. Dr. Sullivan fromthe Center filled that in and you would never know that it used to be a sunken mess. So... I am a little biased - he helped make me whole again - so I feel a ton of gratitude toward him. Binney... on my way to check out your link to step up- speak out. I am certain it will be completely informative and well written as always!
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LOL! Binney - Seems I have seen some of those comments before!!!
Glad to have been able to add to your website!! 0 -
So now we shall modify the aerobar comment with some of these additions (with permission, of course!), and women can decide for themselves whether to try it. Some might find it better depending on where their own LE problems lie. If the hand is the major problem that could still be a good fix. The instability is a worry, so a warning about that would sure be in order. Thank you to all you experts!
Binney0 -
I did not try aerobars, as was suggested to me by my LE therapist due to the fact that I cannot stay leaned over that far without having horrible back spasms. I started cycling again a few weeks ago and have not had any problems with worsening of my LE. My longest ride was 21.5 miles. I wear a sleeve and custom glove and keep affected hand lightly resting on brake hood and pump fingers frequently.
After reading some of the posts, I am having second thoughts about having reconstruction with an implant. It would be a nightmare to go through surgery and end up with worsening of LE. I can deal with the mild LE that I have now. Decisions, decisions.
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Wow! Great discussion regarding detailed information on handle bar positions and possible lymph node reconstruction. Lots of great info to think about.
I have a confession to make. My main ride is a hybrid. (gasp!) Okay, it's out. I'm not a hardcore stud. My husband rides his mountain bike as a handicap to even things out when we ride together.
Actually, North County Trail in Westchester is one of my favorite rides because of the shade. We like to do about 10 miles going mostly up, up, up and then 10 back down, down, down. I need to get more time on flats before getting back on this trail.
I also love Bike Sundays on the Bronx River Parkway in May, June and September. Lots of families, bike clubs and all kinds of riders on some beautiful road with no cars.
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Springtime, I have a sagging butt.
But thanks for the idea on the GAP. I met with Dr. Constance Chen yesterday. (Between everyone I've met I liked her and Dayan best.) I was really comfortable with her level of experience and how she approaches the DIEP. She had many options for me and good answers (for instance, switching to a GAP or other proceedure if the DEIP failed) and I like her short surgery time. She's also on the forefront of the lymph node transplants. She has a study going right now for women who've had no reconstruction or implants who are switching to a DEIP. You can be randominzed into either no lymph node transfer, or a transfer. She's interested in seeing if just the DIEP alone helps. She and other doctors said that the leg swelling came from removing too many nodes, and now that they're removing just 2 or 3 things seem fine. So ... I don't know what I'll decide, but the more I talk to people, it doesn't seem crazy to me.
As far as cycling and the sleeve, I saw my therapist yesterday for the first time since March, and my arm's gone down. All I'm doing is wearing the sleeve cycling, no wrapping at night. So maybe the darn thing works. Although she also said that a number of her patients have reduced arms right now, so maybe it's just the weather.
Nordy, thanks for the info on core strength. Great info. And Teal, any cycling is studly.
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Teal - whatever ride you own does not matter! The important thing is that you are getting out there!
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Teal, I don't even know what a hybrid is, but I don't have a racing bike either, just a nice one for local paved trails... and my DH is now riding a beach bike with enourmous fat tires (so you don't sink in the sand!). So we look a pair! But Nordy is right, we get out there!!! It is, bar none, my favorite exercise. I love it.
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Nordy, I think I read on another thread a message from you saying the only thing that helps your LE is excersise. Can you elaborate? The reason I ask is this: I was riding a lot, even in the heat, and it seemed my arm went down. Then some things happened and I didn't ride for a couple weeks. It seemed my arm was swelling. This weekend I rode again, both days, in the heat and pretty hard, and it feels like my arm is better. Can this be true? What has your experience been?
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Kriserts - It can absolutely be true. When you are riding, even though you may be in a dependant position for your arm (meaning you are putting weight on it and it is down), but you are practicing deep breathing! Deep breathing works to clear your abdominal and deeper truncal nodes. This creates a "vacuum" affect, where these nodes are now clear and tend to pull or "suck" lymph fluid from your extremities. Clearing the nodes in the abdomen/trunk is key to any good manual lymphatic drainage sequence - and aerobic exercise does this all automatically. For me, I tend to swell for a day after a really long, hot ride (but I deal with it because I love to ride and for me the benefits outweigh the cons) - and I do need compression 24/7, but other types of exercise help my lymphedema so much - specifically yoga (lots of deep breathing there) and weight training (helps to "pump" the fluid toward the trunk). I think Spring has also said that the only thing that helps her LE is exercise. If you are having decreased lymphedema with riding - I think that is fabulous! Just remember your sunscreen when you are out there in the heat!
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Yes, cycling helps my trunctal LE. I wear an Under Armour compression top and a sleeve to be on the safe side. Besides the "trunk" action Nordy describes above, I also sort of pump my armpit pec muscle on that side while I ride. I also discovered sort of by accident that weight training (again the pumping I think) helped my trunctal LE.
Most of Yoga is great for me, but I do have issues with inversion (going up side down). If I do and hold down dogs and headstands I get a trunctal LE flair that's bad and takes a while to resolve. I do that stuff very sparingly or I pay for it! Everybody has to discover what works best for them. I have another friend on the boards who says the inversion helps her LE!! Go figure!!
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thanks ladies! I thought I'd be able to sit in a rocking chair when I get older. Now I HAVE to keep excersising!
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Spring - I do inversions all the time without incidence! Let me restate that: without incidence as long as I wear my sleeve to class! See, just another thing where we all have to learn what works best for us! It is certainly a lot of trial and error!
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So, how is everyone doing with their cycling?! I need updates! I'm 13 days post double mastectomy and 23 lymphs!
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Welcome Modibo! I'm in the northwest and can't wait to get back in the saddle for casual weekend riding. Thanks to all the great tips from the wonderful ladies on this site, I haven't had any problems at all with LE and bike riding the past few years: MLD and exercises before and after, compression garments, hydration, deep breaths, sunscreen and arm pumps. I also take a break every 30 minutes to elevate the arm and leave the compression sleeve on for an hour or two after rides before taking a shower.
Hope your recovery goes smoothly. You'll get on the trail again ,just take things slow and easy at first.
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