Kicking LEs butt!! Exercise & Self Care Log
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Hi everybody!
Not much exercise, if any, the last many days. Today I finally got to go to a pool for guided water exercises, which was great at first, but I totally overdid it and afterwards my arm felt like carrying around a brick. Wearing the sleeve for a bit after the pool I think saved me, cause now it feels ok, meaning it didn't get worse (that's my new definition of ok!). It's incredible how water can trick you, as everything is much easier to do, but I'll be more careful next time :-)
The instructor at the pool had of course no idea what LE even is, but she promised to look it up and help me with more specialized exercises, so at least we'll be working together on this. I've found some aqua lymphatic exercises instructions and will share that with her too.
Carol, is your knee any better? I never got around to translate the stepupspeakout LE explanation into Spanish after all, not yet at least :-(
hugz4u, I hope you feel better soon!
mnmbeck, glad your surgery went well and you don't have LE acting up :-)
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Walked about 2.5-3 miles tonight with my dog. My sweet, faithful companion! I am not supposed to walk her because I had my exchange surgery 12 days ago and am not supposed to have any 'pulling' on my arm. SO...I got a leash that attaches to a belt....and off we went. I never used my arms at all, and she seemed to just 'know.' We had temps in the 60s today..it's been a LONG time since we have felt that in MN. It was glorious!!!!
I think I may have mentioned that I have gained almost 20 pounds since diagnosis. I was extremely active before, and diligent about eating clean....both went down the toilet when I was diagnosed, as I sat around and ate whatever the neighbors and friends dropped by :-)
I know that weight gain is a risk for LE. So....has anybody lost weight and seen an improvement in their LE? Or...is that only a one-way deal....gain weight, get LE....lose weight, you still have LE. ???? I know I wont' get rid of it, but I dream of not wearing compression all day every day...especially now that I know the weather will soon turn hot and humid. I cannot imagine wearing this stuff in the humidity. I think I will feel like I am suffocating!!!!
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mnm, when I was taken off the hormone blockers last June and went back to chemo, the weight that wouldn't budge dropped off of me very quickly. That was pre-LE. The only weight I've put back on is the 20 lbs of lymphatic fluid that I have trouble moving out of my leg. My LE pump is due here Friday and I can't wait for it to get here. Should make a huge difference in my swollen legs and a lot easier than trying to do the manual myself. I would love to be able to go back to my long walks but I can barely walk now.
I'm also convinced that my LE got worse when I had radiation to the tumor in my LE leg. Swelling went from just my calf to my calf and thigh. My arm also started swelling again after a long hiatus. Doesn't matter whether I wear my compressions or exercise. I'm just having a hard time getting this to go away. It doesn't mean yours will get worse or won't ever go away. I think we're all pretty much different in what works and what doesn't.
Laurel, what a great picture! Glad you were able to make an "escape"!
Sue
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mcgis, my arms almost always look the same, but every once in a while the upper part of my LE arm is visibly larger, although it wouldn't be noticeable from across a room. Often, however, I feel that arm is more jiggly than my unaffected arm, which I interpret to mean that there's fluid buildup brewing. Almost daily that arm feels heavier than my other arm, and especially after exercise. When I feel the jiggles, I usually have some kind of subtle burning sensation, too, and my truncal LE spot will puff noticeably (and be tender to the touch). It's kind of amazing how there are so many different ways that LE symptoms develop. The whole notion of diagnosing based only on a tape measure confounds me, but there have been so many risk studies that diagnosed using that method, it's no wonder that the risk of LE is often understated.
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What a good question...Does LE get better if you lose weight? I have lost 5-7 pounds and I haven't noticed a difference. I aim on loosing more and will check in if I have good news.
Dog walked me yesterday and I walked myself today.
YOU GO GIRLS!
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Hi everybody! I haven't posted here in awhile and thought I would check in. I'm still working out twice a week with my trainer. I just found out this week she is staying at the university to do a dual Master's degree so I won't have to say goodbye to her.
I'm so happy to keep her … it's hard breaking in a new trainer. 
I've noticed with the warmer weather and spring storms that my arm is achey … but I'm not complaining … this winter has been brutal. carol57 - I'm sorry about your knee.
Hugs to you. Jeannie57 - I tried a spin class at my local gym and five minutes I knew I couldn't continue … too much pressure on my hands and that is my trouble spot. I do really well on an incumbent or recumbent bike and do some spike in intensity for 30, 45, 60 seconds at a time …then drop it back down … do that for a total of 5-6 minutes … not only is it a good cardio workout … doing that does more for getting the fluid out between my finger webs than anything else I do.
mnmbeck - You'll get back your fitness level … you may have to modify some things but you can get there. The ladies on this board are a true inspiration.
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JWoo - Yes!
I've only ever done the entire video a handful of times but I use the lymphatic opening a lot … especially in the summer months when my LE is worse … it's part of my morning routine.
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Thanks so much for confirming! I am dealing with mild trunk and arm LE on both sides, keloids where my draintubes were are wreaking havoc on my body. Currently in PT for it, but, every bit of guidance is helpful! also- seems like this will be good for a laugh as well
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Carol....my CLT measures and measures again before and after interventions when I see her. She also gently 'feels' and 'looks.' My hand is obviously almost always mildly swollen, but the hand measurements almost never really change. It's strange because the places she measures sometimes aren't noticeably different by measurement. But, I can feel tingling, and heaviness and aching. I know when it's there. She has mentioned at times that I don't even have the "2cm for diagnosis", but she still calls it stage 1. I really don't understand the whole thing, to be honest!
My question...what other way is there to diagnose besides tape measure? I have heard (on this site) there are fancy machines, but do most practitioners have access to these?
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JWoo - It totally is!
I've gotten to the point that I don't even listen to it anymore, just mute it and put on whatever kind of music I want to listen to at the time. 0 -
mnm, a perometer measures arm volume using light beams. The process is fast and painless but it's an expensive machine so few clinics have them. It's more accurate than a tape measure because there's no problem with holding a tape at the identical tension and at the identical spot each time. Another diagnostic tool is bio electric impedence, which sends a tiny current through your flesh and measures the amount of resistance against the current. Liquid resists differently than fat or muscle. It has problems because it cannot distinguish reasons for added liquid, but this tool is relatively inexpensive and it's owners are great marketers, so it's becoming a more common diagnostic tool. A perometer picked up added volume on my arm that I was not aware of when I went for evaluation of my truncal LE and they measured my arms, too. It's a very sensitive instrument.
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I started to walk every day for the past two weeks. I try to do 6.5 miles daily. I use very light weights - 2 pounds and do 5-6 reps. No problems so far with lympedema. The weather is much warmer and it works very well on my motivation to keep moving.
I am a very nervous because this coming Monday I am flyting to Barcelona for a week on vacation. I have read the tips what to do on the plane but drinking tons of water means for me every 30 min using the restroom, which may not be possible. I hope that I can survive the trip without a flare up. I have a sleve and a gauntlet but I cannot wear it for more than 3-4 hours because my arm starts to hurt. I use them only when exercise.
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Dani. Welcome to our thread and do keep giving us encouragement with your exercise program.
Getting up and down every 30 minutes would be ideal. Dont worry about distrubing people. Before I had at risk arm I had sleeves/glove on for a 2 hour flight and only sat when pilot said we had to . I stood at back 90 percent of the time with arm resting against airplane wall about waist level. I had about a gallon of water and wee'd the whole time. I havent flown since LE progression but am working my way up to it. They all know I am chicken here.
If you can wrap for the flight that would be ideal. Your arm should not hurt, I am wondering if you have the wrong fit of garments. Dont forget to wear a tight cami or mens underamour compression tee for your trunk if you think you might be affected there. Deep breathe do from belly while sitting.
If you can find a Barcelona certified LE therapist before you go that would be cool because if you have a problem you could book an appointment to get MLD. Phone them beforehand and get costs and location and see if they will take you, etc. I think I would do this if I flew. Me still a chicken even after giving you all the tips!!!
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Ok, I did Lebed opening and slow walk for 30 mins.
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hugz4u - I hadn't done the Lebed opening all winter … a couple of days ago was the first time I've done it this year. It does help me. Congratulations on your 30 minute walk and the discipline of doing that video!
Daninayd - I second what hugz said above. I flew for the first time since being diagnosed with LE in February. I specifically asked on both my outgoing and home flights for an aisle seat so I could get up frequently. I too drank a lot of water and was up every thirty minutes. That's a whole lot better than a flare in my opinion. No one is going to look out for us but ourselves … we do what we have to do.
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Thirty minutes elliptical then light weights, plus chasing around with visiting 8-year-old granddaughter. Accidentally napped for a short time. Where is she??? With gramps, I'm sure.
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For those who are walkers, what are you doing with your arms? They say to "avoid repetitive" movements. Isn't swinging your arms at a 90* angle (like if you were running) repetitive?
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mcgis - I think one variable is how active you were before you had LE. I walked all the time before BC. Oddly, for me, the elliptical machine where you use your arms is better for me than walking. I know that doesn't make sense …. but it's true. So again, it's one of those weird things that you have to figure out what works for your body. When I use the elliptical I am not using any resistance with my arms but I am doing the motion. If either the elliptical or walking cause you to flare … back off and work up to increased time. Or, for you, it may not work at all. Just for an example, I cannot use an upright stationary bike with my hands down on the 'bars.' I swell every time. But I can use the incumbent or recumbent bike (the one where you sit down with your legs in front of you). Wish I had a more definitive answer for you.
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Yes, Dawne-Hope, I agree. Both pressure on your arms like with a bike or a downward dog yoga pose and swinging your ams repeatedly can be risky for LE. (Ha, among many other things!) I think the elliptical isn't so bad because your arms are holding on to something. The Livestrong materials at the Y seem to indicate this. It's all a crapshoot and different for every individual so your advice about trying something, evaluating swelling and adjusting is right on.
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Oh, my exercise today: a couple of forest/beach hikes with an energetic 8 year old and her grandpa. Grandpa just woke up from a nap....jealous!
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Jeannie, sounds like a great form of exercise! and If you kept up with an 8 year old? you done did good!
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LOL, thanks. Of course, now I don't want to leave my recliner at all, ever.
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careful, the 8 year old may appear with a .....need of some sort! I adored my nephews at that age! We used to do craft projects together...usually messy ones~~course now they are all grown up!
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Ok, no walk but 4 hours gardening. Was really careful to vary my tasks, drank lot of water, fist pumps, carried weed bucket with non LE hand and tried not to over do it. That is hard to do when you love to garden.
I wanted to stay out longer but the LE beast would have got the best of me if I did that. Rats anyway, dang le.0 -
hugz4u, I love gardening, too! I was out in mine on Thursday and was reminded that in my garden is where I am happiest.
More hiking today. We're all tired. No hiking tomorrow---rest day! Actually, it's a daughter's bday so it won't be that restful but fun.
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hugz, at least you got your gardening in! That's a great report on a spring weekend. I'm not walking much, either. Yesterday I did a lot of errands, finally home for a day after being away nearly all the time for several weeks. I was in and out of the car, logging lots of steps in grocery stores and the like, and by the end of the day it was more than 10,000. And...roll the drum...the bum knee that's been keeping me in low-activity mode did not swell, for once. So perhaps the PT and rest are paying off, so I just earned myself some additional patience. I do miss my good exercise, though. Today I decided to keep the steps to a minimum, hoping that rest after yesterday's good step count will keep the knee healing in the right direction. Tomorrow I'll do more, so alternating activity with rest days. And I'll definitely do my upper body workout tomorrow, well...definitely maybe, because storms in our area are making my arm hurt like heck, so I'm not convinced that weight lifting is smart, unless the storms pass by early tomorrow.
Dang LE no kidding. And I'm pretty sure that other body parts swell more than they would otherwise when we have LE anywhere. That's one reason I think I'm having trouble getting my knee to behave.
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Jeannie, Me to on being my happiest in the garden, although I am so bushed I had to flop on the bed whilst making it just far a 5 minute rest...now for those fresh sheets soon to be tested!
Carol, so smart to alternate your movement days. Glad your knee didn't swell especially with all the twisting going in and out of car. Yippie!
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I am so jealous of all of you who are gardening. Here in MN, we have snow in the forecast again. It's been a tough winter! My son is a boy scout, and he Is selling flowers (annuals) as a fundraiser. Almost impossible for anyone to know what they want to plant at this point! Sales are definitely down! LOL
Carol...YAY for no swelling in your leg!! It is SO hard to be patient and recover. I can't wait to hear about all of your tough workouts again! It is so inspiring!
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mnmbeck, patience is not my strong suit. I'm getting downright pouty over missing the exercise, mostly because I'm terrified of falling out of the habit. The exercise habit is very hard to acquire and keep, at least for me.
Our Michigan snow is (cross fingers) gone for good, and DH did some huge cleanup this weekend, removing fallen branches that seemed to rain down, probably from weight of the snow. Also all those pesky fall leaves that somehow reappear from nowhere during the winter, after all the work in the fall to get rid of them. So now, thanks to his work, I have great access to my garden spaces. Oh rats, it's back to that patience thing. It will be a long while before I can put much of anything in the ground. We're pretty set on perennials, so I'm looking at the end of May before I can safely put any annuals in.
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