Kicking LEs butt!! Exercise & Self Care Log
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Carol...sooorry Im gonna have to upstage you on this one lol
I see it now - Im standing tall - just before I fall
headlong facedown to the ground - & not much else at all
I'm sure I'd hold the record for the slowest of the slow
I'd race you for the "queen of slow" but here I have no snow.0 -
Oh, but Musical, you WILL have snow, some 5 or 6 months from now, when we're basking in the warmth of summer!
Should we add slow-skiing to the Olymphics events?
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Right now I just walk 20-30 minutes a day. When I'm done with Radiation I want to start more - longer walks, going to the gym... BUT, I'm scared. Do I just start off small? Next step would be to increase my walks. What about weights? Start with 1-2lb. What exercise are you doing with your arms? Curls? Raising arms out in front of you? To your sides?.... Oy, I'm just really nervous about having a lymph flare up!!!
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well starting small is a good idea. Question, do you have access to a gym? My gym has one trainer who is familiar with cancer survivors and I know he has told me if any of my pals have questions, he will be happy to answer their questions
when I started back after rads, I went slow (sort of like anytime you are out of the gym for a time. The YMCAs have a program called Livestrong and guess what, if your local one has this, it is FREE to survivors! Check it out. When I started up with my trainer, he had me doing 1# weights, he measured my arm before and after. Only when we were sure my arm was not swelling did he increase the weights. If you have LE then you should see a therapist and they will work with you. Key is to measure before, and after and only then up the weights. Also, there is a web site called Step up Step out and they have lots of good info
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mcgis, here's a document to read and to print and give to every exercise coach, instructor or trainer that you will be working with, whether in formal personal training or in a class: http://stepup-speakout.org/Trainer%20doc%20for%20... It explains a lot about exactly what you're asking about.
This handout does not describe a particular sequence of exercises, but if you want some specifics, PM me and I can help you with that--not something I can link to, but can send you if you're willing to exchange email addresses.
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Hi ladies, my first plane ride went well and my lymphedema did not act up thank god! I went to disney so at the end of the day I was ridiculously exhausted and hurting but I propped my arm up on pillows and by the morning everything seemed to be ok. I was so excited to work with the personal trainer before I left and she was so attentive and concerned for my LE but now Im back and she left for a week for her vacation so I doubt I'll get much more in before my surgery on 2/12. So Dr. Massey thinks just by doing the diep that she will minimize my lymphedema and it might even go away- I am so nervous and excited at the same time. Carol I am going to pm you for some exercises, maybe I can do them on my own for the next couple of weeks.
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Bet, it's wonderful that your trip went so well, and wow, your surgery is coming up fast! I'll look for that PM--probably in the morning, as I'm putting my computer to bed in a moment or two.
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I was concerned because my CLT said "no exercise" for what seemed like a long time (it was actually about 5 weeks). I don't know if I completely understand all of this LE stuff. She is being pretty aggressive (I think). I see her twice a week, she does massage, teaches me something new every day, is trying to work through my skin reactions to these compression garments and is overall just really attentive and seems to be working hard for me. She even emails me in between appointments if she thinks of something, or talks to another therapist who might have an idea for me. Then, she mentioned today that there is some definition of LE out there that says you should have a 2 cm difference in your arms (I might be wrong on some of these details) in order for it to be officially diagnosed. I do not have that significant of a difference. She wasn't telling me that to say I don't have LE...she believes I do. But, she was trying to reassure me. She also said something about the first year being a year of change, and that some say you should even officially diagnose it during the first year. Meanwhile, she keeps working hard for/with me to get rid of it.
Today, she decided we should give a tiny bit of exercise a try. It wasn't what I would call a "workout." :-) She had me do 2 pound weights for a few exercises, and did the machine (felt like no weight) for lat pulls and one other exercise. She measured me before and after. I had a decrease of 1 cm in my upper arm only. Not impressive, but it was a change, which I rarely see. She told me to go home and do the treadmill....10 minutes. WHAT? She also said I could do some crunches, and some lunges.
I am only mentioning this in response to mcgis. I don't know if what she did with me is 'typical.' But, I guess it is an example of how little they start out with. I was a big exerciser before....love my kettlebells. But, honestly, I guess I have done absolutely nothing for several months since this all started, so I'm probably back to square one.
She told me that there is a big temption to overdo it in the beginning. Unfortunately, we don't know what it MEANS to 'overdo' it! She said we will be trying to raise my threshold without passing it, and this can be a challenge. But, we will err on the side of caution for now. Does this seem consistent with what everybody else is doing....or at least how they started?
So....my understanding of starting to exercise again after LE diagnosis is.....take it slow....slower than you think you should. And, a workout isn't going to necessarily feel like a workout for awhile!!! I am just dying to hop on an elliptical machine, suck air, and SWEAT! My body is weak, flabby and fatter than it was before this all began. Ugh!
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I have had some tailbone pain for many months now, with doc thinking it was related to walking/arthritis. When I drove this past weekend to TN, I realized I am shifting my weight onto the left side to avoid the pain, which has led to more pain from the imbalance. Wednesday started with severe pain in left wrist if I turn the hand quickly. My LE is on the right, so now I have my sleeve/gauntlet on right and wrist brace on left. I'm using my Viniyoga tape for low back/sacrum/hips, but trying hard to rest everything else. I have oncology appt on Wednesday and hopefully will be able to get some scans to check everything out. Sounds funny to say I hope it is arthritis, but at least that doesn't require chemo or surgery. Looking forward to a week of below zero temperatures here. It is beautiful when viewed from inside the warm house.
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mnmbeck, there's no 'one' criterion for a lymphedema diagnosis. Here's a short discussion of that from a course for nurses:
Diagnosing BCRL: edema
After breast cancer treatment, lymphedema
is suspected when there is visible arm swelling. Typically BCRL is confirmed by
comparing the limb against a non-affected arm. Comparing a suspected-BCRL arm
with an unaffected arm is problematic for bilateral patients, or when the
suspected arm is the patient’s dominant arm. In patients without BCRL, the
dominant arm can have a circumference up to 2 cm greater, and a volume as much
as 8-9% greater than the non-dominant arm. Pre-surgical/pre-radiation baseline arm measures
remove this confusion.Measurement criteria currently
used to make a BCRL diagnosis vary widely and include:- 10% volume increase
- 2 cm circumferential increase at any one measurement
point along the arm - 5% circumferential increase at any one measurement
point along the arm - 200 ml volume increase
An ‘increase’ may reflect a comparison to a non-affected arm, or to a
prior, same-arm measurement. Measures are most often taken using a
non-stretching tape measure, measuring at four or five anatomical landmarks
from shoulder to hand. Measures are then
converted to limb volume, using charts or computer software. Other measurement
devices include water displacement, infrared perometry, and bioelectrical
impedanceThe International Society of
Lymphology (ISL) also recognizes Stage (or Grade) 0 lymphedema:Stage 0: A latent or subclinical
condition where swelling is not evident despite impaired lymph transport. Stage
0 may exist months or years before edema becomes evident.Keep in mind that patients often
report sensations of heaviness, fullness, numbness, achiness and tingling that
are demonstrated to accurately predict onset of BCRL. In addition Stout (2008) suggested
that treating subclinical BCRL (limb volume increases of as little as 3%) with
compression may prevent BCRL from advancing to more severe stages.I did see one study that was well designed that found that post-surgical swelling often does resolve and not progress to chronic lymphedema during the first year, particularly if the patient had received taxane-based chemotherapy, which the authors identified as a common cause of swelling. Interestingly, that same study found that those who exercised were more likely to see their post-surgical swelling reverse during that first year (it was a study of exercise vs. no exercise and the effect on LE risk during the first year after surgery). The exercise in question was cautious and conservative, similar to what your CLT is having you do.
Exercise can help reduce swelling from injury and is suspected (not proven) to help improve LE and/or reduce risk of getting LE, because our muscles provide pumping action to the lymphatic capillaries to enhance movement of the lymph within. That's one reason you'll often see advice to elevate your arm while pumping your fist--to engage the muscles. It's also one reason that compression sleeves help us--they provide a firm surface against which our muscles can push, to increase the pump effect on the lymphatic vessels. So gentle exercise has a direct impact on lymph drainage, although if we over-do it, we can invite more lymph to 'the rescue' by creating a rise of core body heat, the possibility of a high weight load that triggers inflammation, or excess repetitive motion that causes fatigue to the point of pain or stress that in turn draws lymph.
You WILL return to your former fit self! As you said, the path to getting there is not going to be what you would have done prior to the whole BC business. Kettlebells...well, keep an eye on them for inspiration, but you need to work up to those weights, and I've seen people put a lot of big motions into using them, which makes me think that there's a lot more resistance being applied to the arms than just the amount they weigh.
If you ever feel like jumping on the LE advocacy bandwagon, there's an amazing woman in Delaware who can bring an exercise-with-lymphedema workshop to your city, designed for personal trainers and LE therapists. I brought her to my area for a day, with some financial help for her travel expenses from two hospitals and a local company. We charged a nominal amount for the workshop, which the participants' clinics and fitness centers were happy to pay, to cover the instructor's fee. It was a wonderful workshop (I observed all day). My own trainer participated and that has meant that our weight lifting work together for the past year and a half has been exactly what I need, and I've been able to progress pretty quickly. You can find her here: http://cancersurvivorfitness.com/ . It was a lot of work to organize what was needed to bring the workshop to my little town, but well worth the effort. One great outcome was that several LE clinics that sent therapists are affiliated with fitness centers at hospitals, and they sent personal trainers. So there are some nice pairings of LE therapists and personal trainers who speak the same weight-training language and can work together for their patients'/clients' benefit.
It's easy to get discouraged, but hang in there.
Carol
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Laural,Yikes, that's so frustrating--pain from an undisclosed source! You're such an incredibly focused exerciser, and with all the walking you did to prepare for your big event, with no such pain, it must seem like this is really out of the blue. Arrgh!
I should report that I'm not getting a lot of exercise in. Staying in a rented house with a lot, lot of family and my job is mostly to keep up with the little ones. I skied one day but not at all tempted to do it again, given the sub zero temps. No convenient way to exercise, aside from all the running after kids, so I'm just not worried about it.
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Hey Laural,
TN is so pretty as I have been a few times. Sorry you had to come home to more snow. We received another 1-2in today in PA. Tired of it all ready
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I actually enjoy winter...grew up in Buffalo so snow is a part of some of my fondest memories. Got out and walked a mile yesterday, trying to keep my back moving. I had xrays, but doc was off last 2 days, so no results. I dislike waiting for results, but glad that we at least have good access to health care here in this country. Stay warm everyone...looks like another week of frigid cold up here in the North.
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Hey girls, got my TM (treadie) last night and I think its going to be great! AFTER RTM (read the manual) it was a little freaky to see you have to have 8ft clearance behind and 2 to the sides. In the room its installed in that's virtually impossible. :-( . Pity they dont tell you that when they sell you these things. I was pretty ho hum about this to start with then I thought hang on a minute...this is safety issue. These things arent toys and if you can off and get caught up in that belt because you didnt have enough room.... um... doesn't bear thinking about
. Anyways I dont exactly think this ol girl's gonna get into running let alone top speed. Did a K on it this a.m. AFTER my usual morning walk, 
and it was great. Loved it!!! My stats were - (dont laugh) 12.32 minutes
1,005 Ks
59.8 Cal burned
speed 5 (12kph???)
OK so how many cals should we typically burn everyday?
I see the belt is off center so looks like gotta do some tweaking.
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musical, hey, the new toy is a hit! great and I do think your numbers for the first day ain't too bad girl! Have fun,
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We have had a treadmill for about 12 years and love it! We even make our dog walk on it sometimes during the frigid MN winters (and sometimes in the sweltering summer, too!). Keep the exercise ball away, though. Once, my toddler rolled my exercise ball in the room where I was on the treadmill. It came up behind me, the belt of the treadmill caught it and pulled it underneath! Imagine my surprise when I was suddenly on an almost completely tipped over treadmill!!! All was well....and the exercise ball didn't even break! LOL!!! Enjoy your wonderful new toy, and, as my husband says.....make sure it doesn't become a coat rack!! LOL!
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thanks, Carol. I do have that for when I do get the nerve, and finish Rads, to go back to the gym.
Do you all find that your arm/hand does better when you do workout versus not working out?
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mcgis - Unless something is "going on" I always find exercise is beneficial, but its how much is the question. The main thing is not to overdo it or underdo it and of course that will be different for each of us like depending on how fit we are.
proudtospin I'm not sure on that 12 figure. Dont know what it means. Its not Ks so Ill look in the manual. This a.m. I did 1.1 Ks as well as about 1.5 miles on the road. That took me 11 minutes including a little warm down.
mnmbeck - WOW a ball getting under the belt!
thats just the type of horror story I hope to avoid. Hubby is going to turn it around for me tonight so theres more room at the back should we 'can off'. Im not a fitness freak by any means but treddy is a necessity for me and unless something dire happens, it has a longterm job to do so coat hangers look unlikely (lol unfortunately). I do say I always feel better after a good brisk walk, even though my feet protest from neuropathy if its too warm. Gonna jack up a fan in front of it. Just figured out, it has a safety key with an extension which you can clip onto your cloths and if you fall off it pulls the key out and stops the machine. . 0 -
mcgis, I actually do think that my arm feels better when I'm exercising it regularly. But I've never done any kind of experimenting with record keeping to be sure.
I've been frustrated in exercise these past few days, stuck in a big ice storm in Alabama. My flight home has been canceled and rescheduled four times in the past two days and I am forced to spend two extra days on my trip. The biggest frustration is that where I've been staying, there are no pedestrian-friendly streets or walking areas, and the roads are too nasty to imagine walking in traffic. The hotel 'fitness room' is a small, hot room with treadmills, too hot to stay there very long. The good news is that restaurants are closed, the hotel ran out of food, and I've been eating fruit and granola bars. So despite the lack of exercise, I'm not eating more calories than I'm able to burn off!
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You guys are sure getting hammered with snow storms galore. Been hearing of these massive show dumps for weeks now (???) seems like it. That must be extremely annoying Carol being held up like that. No wonder you long for home. It is hard when things like that take us out of our routines.
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So, all my testing came back and it is just arthritis in spine and wrist. My daughter texted and said, "Yay, you're turning into an old lady." Never thought I would see old lady days, so guess I just need to celebrate it. Carol, I agree that the weather has been playing havoc on exercise time. Hope you can get home soon. We are staring into predictions of more snow next week here in Ohio, so shoveling may continue to be the exercise of choice.
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Does anyone workout with TRX the fitness bands that hang from the ceiling? I am looking for something different to do at the gym tired of cardio machines and the weight room.
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Ok I am going to try again. I need to exercise through the nerve pain because new pain meds are not working. I need some endorphins some how.. Any suggestions? Maybe just start sitting down with Lebed??? I am not close to a swimming pool, I live on a mountain so even walks around the outside of the house are a bit strenuous. I'm not very confident with myself right now, but since I'm of the Gralise, I have my brain and balance back...
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teacher, I was using the TRX system at my gym really liked it but...at my gym, you must be supervised by a trainer to use the system. I was lucky that my trainer was trained as a "cancer exercise" therapist so do be careful when if you try it
Carol, yo girl so is wine still around or it AL a dry state? hope you get home soon!
me been lazy this past week, all folks should have a week off once in a while, I will be back on Sat but this week...a bust
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Thank you Proudtospin, I was introduced to it yesterday and really liked it. I would be supervised by a trainer at all times, she does not have any experience as a cancer exercise therapist, but I am going to listen carefully to my body.
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my trainer measured my arm, before doing anything
then he measured it each time we met and only increased the weight if no change in the circumference. Easy to check each week
I had no problem and really did find it fun and a great work out. Suggest you let your trainer know and start slow! enjoy!
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Hi ladies, thank you SO much for this thread! It took me more than a year to make peace with the fact that my lymph nodes were removed (long story...), but now I'm really looking forward to taking care of my arm in the best way possible. I still have limited ROM 13 months out of surgery, but lately it's getting better by the day, which is just amazing.
I didn't have LE, until I moved with my husband to another country/continent 5 months ago. My physiotherapist back home partly blames the altitude difference in my new home, but in any case the fact is that my arm got swollen, albeit only a bit, and it doesn't go away. I wake up with very slightly swollen fingers and armpit and part of the operated breast as well.
I never got information about LE either before or after the surgery, other than vague warnings about infections and blood pressure and I was never measured. Now that I got over my shock and grief over the surgery (for the most part), I really want to start exercising, but I'm afraid I might do something to make it worse and I need guidance from a professional, at least at the beginning.
I shared my concerns with my new onc, who kind of blew me off and insisted I don't need to see a specialist because my case is not substantial. My current physiotherapist for ROM wasn't very helpful either. I cannot diagnose myself and I don't know if this swelling is only due to the altitude or if indeed is LE. Everybody seems to think I'm overreacting. After I persisted at the onc's office, he gave me a number to call in a rehab center to ask for more information. I don't think he considered my worries legit enough to give me an actual reference.
Thanks to this thread I know now of the Lebed method and I'm ordering it tonight, along with a couple of other DVDs about yoga after breast cancer that I found on Amazon. I'm starting to have hope that there are ways I can help my body.
Do you think it would be safe to join a soft yoga class or chi kung/tai chi, even without a specialist monitoring me? Am I really overreacting? I thought I was following the latest guidelines on LE, but maybe I'm over thinking it...!
Thanks so much for letting me share and sorry if I got a bit carried away.... :-) I'd love to hear your thoughts.
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I am finally on my way home after trying to leave since Tuesday, 5 cancellations in all. I have a TRX and often travel with it, but it uses body weight resistance we cannot measure so not recommended for those with or at risk of LE until AFTER you have developed considerable upper body and especially arm strength using weights or machines where you know the amt of weight and add it slowly and in small increments. I did not return to my TRX until recently after I could consistently lift 50 lbs on a bench press and 20 in each hand for a bicep curl. It's totally fun to use but is it worth triggering LE problems?
Airplane door is about to close but I will add more to think about later tonight if I can.
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Just zipped thru last few posts and was so happy to hear that Laurel has Arthrits and not BC related problems. Can you believe it. Us girls are just so releived to have any other major disease opposed to BC. Shucks... Arthritis is not fun either. I have had it since my early thirties and it stinks.
GMA. Yup start out real slowly and report back. Sitting lebed is ideal.
Teacher911. I was thinking the same thing as Carol. Resistance exercise is tricky to master with LE. Be careful and don't overload. It truly is not worth a flare up or damage.
LIA13. Welcome to our group. You havent heard from me as I have been a slacker lately but I am going to shake my tail this afternoon as we have glorious sunshine out west and NO snow. Just snowdrop flowers in full bloom now. Gotta love it, before our rain starts up as usual. I am the girl that lives in raingear whilst walking.
Your LE story sounds so familiar with docs in denial. Don't know if you googled stepup-speakout.org but some girls here developed this wonderful website to help us cope with LE. It's a nasty beast but doable.We are here to answer ANY questions also.We understand what you are going thru. A big hugz from all of us.
Sounds like you have breast, arm and hand le with possibly trunk involved. Moving boxes and altitude can make you swell but also you are out 13 months so you might have post surgical swelling still but I doubt it. Go get checked by a Qualifed Lymhedema therapist only. The website I gave you will help you find one in your area. Most PTs that are not trained don't have a clue what to do with LE so you need a qualified person to teach you how to cope and give you tools to help manage.I think you can join a class as you mentioned but no pressure on your arms to aggravate them. Start REAL slow. Walking is a good way to start. Have arms in a 90 degree angle so they are not dangling down.Raise arm every so often above your head and pump fist slowly to drive the fluid up.Drink tons of water all the time. especially if you exercise. Wear a COMPRESSION teeshirt like UNDERAMOUR for men,(not women) one size smaller. You may feel better controlled with breast swelling. Yes, you will have less swelling after waking up. Elevate and rest the arm above the heart but dont get uncomfy doing it. Your LE doesn't sound too progressed so that is good.Maybe even reversable if caught early enough.:) I hope, I hope!
Carol. Doesn't 5 cancellations count as exercise? You did have to move your fingers to rebook didn't you?Welcome home and watch the snow digging with LE.
The rest of you, I am so sorry you are in the deep freeze. Jog on spot. Climb stairs. just move inside if you have to.
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Lia and Teacher, take a look at this document: http://stepup-speakout.org/Trainer%20doc%20for%20SUSO-040113.pdf It's an explanation of LE and how/why exercise programs should be modified to reduce our risks. The document is meant for personal trainers, exercise instructors, yoga and pilates teachers, etc. Another version of it is for women who have or are at risk of LE: http://stepup-speakout.org/Handout%20doc%20for%20...
The two documents have similar information, but the one for trainers is more detailed. The most important information from both documents is that we most certainly can exercise as we like, with some adaptations, and that getting to our goals safely requires some strategy and a good dose of patience!
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