GRRRRRRRRR I HATE LE..........
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I never thought I would say this, but I love wrapping. It feels so good compression-wise, but not so good heat-wise. I haven't been very consistent with it lately partly because of the heat, and partly because my husband does the wrapping, and during the summer he gets to sleep later since my son is home. I hate waking him up before he has to get up just to wrap me. (I can do it, but not nearly as well as he does.)
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I do the Lebed too. And it's amazing that the 2 different LE therapists that I've seen haven't heard of it. Or heard of dry brushing. And never seen the breast binder that I got from EaB medical!! I feel like I'm educating them.
I need to do Lebed everyday, but I don't always make it. i do manage 3 days a week at least. It seems good for the upper body, but not for the lower body needs. milehigh,, I wonder if you email Sherry Lebed and tell her of your problems if she could come up with something for you. I know she took comments back when she posted her Youtube videos. Might be worth a shot.
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My last LE therapist says that if you sit alot, you need to open up the lymph in the groin area every time you stand up. Never thought about that before, but makes sense. We squish those lymph nodes every time we sit.
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I have a question for those of you who have more experience with LE and thought I would post it here.
Have any of you been told by your LE therapist to stay away from bras with underwires? I was advised to avoid underwire bras since the wire will put pressure on the spot near where they took out the lymph nodes. I've developed very mild LE in the upper arm, axilla and chest and I don't want to aggravate it but on the other hand I can't find a wire free bra that gives me the shape that I had with the bras I wore pre all of this stuff. Yes this is a bit of a grrr moment for me!
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hi there, I was told that, I ignored it and continued to wear my underwires for my DDs. Then I started getting a sharp pain in my side, dang if I did not think I had a broken rib! Had it x rayed by my PCD, turned out no broken bones but the sharp pain would come and go and often when I was working out
I have LE in my trunk area, finally I stopped wearing the under wire bras and no more sharp pain! Now I wear bras with support but no underwires
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I've gone back to wearing those bandage bras they put me in after the surgery. It makes my foob hurt more, but I figured maybe the lymph would flow a little better. I know I will get a lot of questions answered on the 18th when I go for my LE evaluation, but I am guessing you think it is ok to wear a regular (non-wire) type bra that isn't too tight. Is that right?
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thanks for sharing your experience proudtospin, I guess I'll stick with wire free and continue my search. I would rather forego shape and style with my bra than to trigger more LE.
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wide bands under the breasts and wide shoulder straps are the recommendation by my LE therapist. Narrow bands can cause the lymph to get blocked.0 -
I think I finally did a good job at MLD. I peed a lot more than usual, including one right after my morning session. I hope I did as well tonight. Maybe I can move some of this stuff. It sure makes me nervous when doing the clavicular area. It is hard to even find a spot on the right side that isn't a big hard lump. Anyway, I worry about spreading it. On the other hand, this is what the lymph system is for, so I may as well help it do its job.
It must be a bit truncal too, so I'm returning to those bandagy things again. I wore a regular bra today and it seemed to get tighter at the end of the day.
I sure wish it was next week. A week from tomorrow I will go to the LE therapist. A week from Wednesday I will go to the onc.
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what kind of bandagy things do you wear?
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Oh, they look a lot like gauze. They Velcro together in the front. I lost a lot of weight, so they are quite loose. Ugly as sin, but loose. LOL
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I've had luck simply pulling the underwires out of my underwire camis. I don't like wearing a bra--not sure if it's truncal LE, or just the odd feeling of my faux diep breasts, but camis with cups seem to work well, because they don't have a band under the breasts. The ones with underwire seem to give me the best shape, but the underwire bugs me and it's supposedly not good for LE. I pulled out the wire and the little fabric band that was its casing seems to provide enough support to hold the garment's shape, without cutting into me. Whether this would work with an underwire bra...no clue. Maybe experiment with an older and/or cheaper bra?
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hmmm, Carol, think I will test pulling out underwires from the bras in my closet that I have stopped wearing, will report back!
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I think I too will have to experiment with one of my older wire bras and see if I can take out the wire. Chances are that I'm not going to wear that bra again so what do I have to lose! I I'll report back.
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Just 3 more days until my LE eval. The swelling is horrible. My belly is getting fatter. Does fluid accumulate there or is it that I can't do my regular exercise?
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Do some belly breathing and drink plenty of water.
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Dunesleeper, welcome to truncal LE. I've had a horrible time the last few weeks with truncal/abdominal swelling from the fluid. I do the manual massage faithfully AND drink lots of water and I can't seem to budge the fluid. I'll be interested in hearing what your therapist has to say. I'm glad you're getting close to the appointment.
GMA, does drinking lots of water help your truncal LE? Doesn't seem to work for me. Wish it did!
Sue
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Yes. Staying hydrated does help.
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truncal LE sucks! I have it in the armpit area and around my MX scar. I wear a breast binder with a swell spot. For me, compression helps a lot.dunesleeper: have you tried walking? Large muscle movement can help get the lymph moving as well as deep breathing and hydration as the other ladies have said above. I wonder if your therapist will suggest an abdominal binder.
Hope your appt goes well and you get some help.
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Thanks for all your suggestions. I have definitely not been walking. I have been planning to though, so I'll get on that. I got a bit depressed about this and all these lumps I'm getting and the way my MOs office has been treating me, not returning my calls and all. At least on Monday I'll start getting something to address the LE. I would be very surprised if the therapist doesn't call the MO and set her straight too. You can't even massage the soft spot at my right clavicle due to all the large hard lumps. The right side of my neck is hard too.
Anyway thanks. Anything other than that was a vent.
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oh, dunesleeper,,, I feel ya!! The LE made me so depressed and angry!! I got lots of help and support on this forum.
I'm so sorry that your MO's office has treated you this way. You would think they would be better about LE than most other MD's! It is concerning that you have these large hard lumps! Glad your appt is on Monday.
A lot of us on here use the Lebed Method. http://www.gohealthysteps.com/
She has an exercise program for LE patients,, Sherry Lebed has LE herself. She is on Youtube,, but each of the opening exercises has it's own vid,, so it's a bit of a pain to go thru it that way,, the DVD is definitely easier. But for now,, you could watch them,, and maybe try the breathing exercises at least. Here's a link to part one. http://www.youtube.com/watch?v=h2luK4JRAbo Then you will see in the column on the right side,, Part 2, etc and you can work your way thru the program like that. It is important to do the exercises in order.
I hope you will get help on Monday. I've only been diagnosed since March myself and it's been a frustrating journey. Arms and legs,,, they seem to get,, but truncal is more of a pain and not everyone is used to dealing with truncal **sigh**
Walk, deep breathing,, stay hydrated,, Hang in there,,
glennie
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I'm so glad for all the ideas too. I've been to the OT twice for the truncal and the last time all she did was take measurements. First time she showed me the massage. I want to know how to move it out so if I can stand the 90 degree heat and my bum leg and pleural effusion will let me walk more than two steps today, out the door I go.
Thank you all. Sue
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I ditto Sue. I will definitely be getting SOME walking in. The grass needs cutting. I have Sherry Lebed's site and youtube channel opened right now. You girls are awesome!
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Thanks Ladies! I just looked at Sherry Lebed's site and did some of the exercises. Wonderful! Some the exercises are ones that my lymph PT taught me and others are new. Now this is something I can do daily……I don't like to exercise by myself. LOL! dunesleeper is correct, you girls ARE awesome!
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I try to walk everyday and do the Lebed opening too. That and compression seems to be the main things keeping me under control. It's weird,, that none of the LE therapists that I've talked to have heard of Lebed,, yet most on the forum have heard of her or are actively doing her program!!and if it is too hot to walk outside,, I go to the mall and walk. If I do the whole length, it's 3/4 mile. If you have a nearby mall and it's hot where you are, you might try that,, just leave the credit cards at home !! LOL!!
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LR therapy today. Perhaps sleeve fitting. Perhaps bra or truncal fitting. Yea! Finally!
I've been doing Lebed. Makes great sense to me. Besides I can't even get into the right side soft spot of the collarbone because of all the lumps. With Lebed I don't have to. I can definitely feel the pull along the right side of my neck and collarbone. I also like the breathing, which I can do anywhere. The procedure my LE therapist taught me requires laying down.
It's all good.
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Good luck today Dunesleeper. Here's to answers and relief!
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Thanks. LE therapist does not see evidence of truncal LE but definitely yes to the arm. She measured but couldn't do more until after I see MO. Yet, she scheduled my next appt for 8 am Wed. Onc appt is 9 am Wed. Confused.
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well, that makes tons of sense,,,, about the appt's,,,, confused too,,,,If you don't have truncal,, what's up with the lumps??
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Dune, call the PT and ask her to change the appt. to a later time. Otherwise you're wasting your time and hers. Sue
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