GRRRRRRRRR I HATE LE..........
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3Jays, NED is most excellent news! I'll second that Woohoo! So glad the LE therapist will be seeing you next week. The item in Binney's link looks excellent. I have been using the round Swell Spot on the side of my chest, but the shape of the Kimbe looks like it would provide precise coverage for the area under my arm and protect from the edges of a slimmer/tank. I'm going to try one!
Trish, you are not a dumb arse! I think we all tend to go harder at times and need to be reminded to tone it down. Same thing with speed. My LE therapist said each move lasts about a second. So when I'm doing the massage, I count 1001, 1002, etc. as I move down from my armpit to my groin. It helps me maintain a slow pace, which also has the effect of keeping the touch lighter, too. I've noticed that when I'm anxious, angry, stressed out or worried about the LE, I tend to have a heavier touch and do the MLD exercises much too quickly. It doesn't help that I see the MLD exercises as a PIA, which makes me want to get them over quickly. I try and make it a relaxing thing and do a lot of deep breathing, which tends to take me out of the PIA mindset.
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Trishia, NOT DUMB!! It is sooooo easy to do the MLD too hard, even when we know it's supposed to be kitten-petting gentle. If I'm frantic about a flare, or angry about having to deal with the stupid LE, or in a hurry to get done -- every emotion does it to me, and there I am scrubbing at my skin and trying to shove that fluid right out of there like it was 10 feet of unwanted snow.
If it's any comfort, Vodder therapists have to go for a re-training session every two years, and by far the main reason is they're doing MLD way too hard! They have a crusty "drill-master" of an instructor who has to ream them out about it every time, but two years later they're back with the same problem.
You can try a scented candle, some soothing music, and a stretch of committed time as a way of setting the mood for gentle. <Sigh!> Kinda hard to do when what we're really feeling is the GRRRRR! factor!
Pat yourself on the back for noticing what your therapist was doing today. And let us know if this new discovery makes a difference for you!
Hugs!
Binney0 -
Yah for NED
Trisha....I went through the clinic in Sept. and went back after Christmas. Don't beat yourself up. I too was doing it way to hard. Much improvment on my part and my swelling since I went back to. I think should all do one session to see how we are doing our MLD. I know I still don't have it all down right in my head but at least what I am doing is helping.
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You ladies made me feel so much better! Glad I'm not the only one who needs to 'lighten up'.
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I have wondered about the order of the massage too. I have just been doing the chest area as my arm is under control for now. I agree with J05 that it doesn't seem like such a light touch would accomplish anything, but it must because I feel it when I skip the massage.
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I went for my first massage yesterday, and I thought the same as you about the light touch. Well, I felt good as the massage was happening, but if I thought it was too light, my feelings sure changed about a 1/2 hour later. My whole arm was tingling and felt pressurized. However, by the time I went to bed last night and relaxed, I felt really good. I won't underestimate light massage again. I feel good again today, very limited swelling.
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Do you do the whole torso massage before you do the arm or can you get away with just clearing the chest area, once in a while?
I am not sure what you do but here is what I do. Collarbone, neck, fingertips just in side the nook of collarbone, shoulder tips, and then under the arm that is not LE. Then I start with the arm. Top of arm, across the chest, then under the arm, Lower arm, top of arm then across chest and then under arm, Then hand, lower arm, top arm ect. Repeat and then after that I do from hand all the way up with one long stroke and then repeat first steps over.
What do you do. Oh and I am sure I do it way to fast too. I am always cold until I lay my head on the pillow...bring on the hot flashes. lol
Hurting tonight and have some more swelling. Goodnews the sleeve I ordered has been shipped and hoepfully the new person will order that costum sleeve this week.
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Wow I wasn't taught to do anything on the torso....and I have truncal LE also. Also wasn't taught to do it in circles. This should be intresting. Yeah I hope understood mine too. Yours were much better than mine but you should see what I got from the clinic....very confusing.
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KittyDog - I do mine the exact same way that Jo5 describes with the exception of the arm because mine isn't swollen right now. I wear my compression sleeve faithfully every day and a compression vest with swell pads at night to help with the truncal lymphedema. It does help, but I don't like wearing it.
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Jo5 - I do a very similiar massage technique.
My understanding is that since our lymphedema is different, so will our massage techniques? Is this true?
My therapist gave me a handout on how to do it and she modified it especially for me I don't have truncal lymphedema, but spend a lot of time on the trunk for the MLD. I don't massage my breasts during the MLD. I have implants, though, and maybe that is the difference? I massage, above them and below them, but not on them.
This is very interesting and fascinating. Thanks everyone!
[edited to add: Jo, on the handout my therapist gave me, for the elbow crease in the insdie of the arm it says to increase the pressure (slightly!) on the pinky finger side. Is that where you have the fluid build up?]
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I think that is true. I was told not to do any MLD over my radiated skin. Which might be why I wasn't told to do anything on the trunk.
Been Tracking my sleeve and it is here in my city. Hoping to get it tomorrow. I so want to see if it is going to work or if I wasted my money. Very tired and sore tonight. Clean the bedroom and bathroom that wasn't on the plan. Shower was pouring water and had to have somebody come out to fix it. Extra MLD tonight and a roll with honey. yum
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thanks for all thedancing ladies! may we all have dances with him for a long time!!! i remeber to do MLD better, when i pet my little doggies first, then do it.. its' hard for me, i used to do swedish and neuro muscular massage for a living!(awhile ago) but, im used to digging out sore spots of lactic acid, not easing out lymphatic fluid.. but, my babies remind me every time i pet them!
thanks for the tip, Binney. i like the spt a lot. willbe ordering 2 on payday! the corners of the slimmer were hurting, that should help. you guys rock!!!
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Hi Ladies , have not posted on this topic before but would love to hear your thoughts on this. I am having breast reconstruction soon and my LE therapist mentioned to me that after surgery when the drains are in, often the lymphoedema goes down... and then when the drains are removed... back it comes.
I was thinking that if i got measured for a new sleeve with my reduced arm from the drains being in that this might be a good idea. Of course i would have to then bandage daily until i had my new sleeve. It just seems such a good opportunity to be fitted for a new sleeve while the arm is greatly reduced.
Would love to hear anyones thoughts on this
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I had rads too and no recon, so I just do the massage above and below my scars and not on the radiated area.
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Wow, I am sorry for all of you dealing with LE. I just came across this thread and am wondering if it's something that you got right away after mx or did it happen later? I had bmx with 11 nodes removed on the rt side. I had cording issues and numbness and now that rads are done I have a lot of tightness. Do you ladies suggest have lymphatic massage even if there is no lymphedema? It sounds terrible and I'm sorry this is something you have to deal with on the heels of BC! ~ Daiva
btw~ I have a Grrrr... baseball cap that I wear on my really bad days. That's what caught my attention.
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X-raygirl, I am still struggling with cording and truncal LE. LE showed up within two months of my surgery. The cording did too, but I was in so much pain from nerve damage that my PT had to wait to work on the cording for several more months until I began taking Neurontin/Gabapentin for the nerve pain. Once we got that under control she began the massage for the cording. It has been brutally painful however and it still isn't resolved after months of weekly PT sessions. She is an excellent therapist, and very well trained, but my cording is extremely stubborn.
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My size six sleeve did come today. I wore it for about three hours and I am happy with it but I still want a custom one. The bottom doesn't feel to loose and the top stayed up. I thought the top seemed too loose but when I took it off I actually had the silicone impression on my arm. I guess I am just use to it being too tight.
You would be proud on my insurance nurse's supervisor. She was reading over my charts where I had talked about how tight my sleeve was and how it left an impression on my arm for so long. She immediately asked her if she told me to quit wearing it because I could cause my arm more damage. She happily told her we had already quit wearing it. Aww a nurse who gets it. Unfortunately my nurse is now gone. On the brighter side they consider me well enough at this time not to need one!
GRRRR we shouldn't have to go through all of this to get a sleeve that fits right. Oh and keep those fingers crossed that my allergy is not to silcone. This is the test run. So three hours today more tomorrow.
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VERY PLEASED TO HEAR NED NED NED !!!! CONGRATS sister !!!!!
Ladies.... can we massage our scar tissue away for good? I would love to know about this. I HATE my scar tissue... and I have been doing what my PT told me to do six months ago... but no change. ANY GREAT TEACHERS of scar tissue removal on our GRRRRRRRRRRRRRRR thread?
XXXOOO
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR
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Laura, after my cast came off, I discovered my shoulder was kind of frozen, so I'm seeing a PT who is doing myofascial work, and she's working on my shoulder, and the adhesions left from surgery and radiation. The therapy is very subtle, but seems to be working. I don't have visible scars--my surgeon was into "cosmesis"--at the cost of just ripping into the underlying tissue--but she left a pretty non-visible scar, and I"d rather have a less perfect "cosmesis" and and hand that doesn't swell...
But, this myofascial stuff seems to work well for me, and I know Tina has had great luck with it as well. This PT is Norton trained and has leg LE herself.
Kira
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Jo, there was a small informal study at the University of Arizona several years ago, where their therapists tried various combinations for the parts of a full MLD routine to see which parts were most effective. They found that only clearing nodes and chest was by far more effective than only massaging the arm.
Which stands to reason, since if you don't chear the nodes there's nowhere for the arm fluid to go. Their conclusion -- which they don't talk about much because they're afraid it might encourage women to shorten their self-care routine -- is that if you're not going to do the whole thing, do the node clearing and chest rather than just the arm. However, doing both was the most effective.
Bottom line, if you ask me, is, what works for you? Some LE gurus are not in favor of patients doing self-MLD at all, because we so often do it wrong (too hard, too fast, skipping steps). But I think it's reasonable to expect we'll all work out slightly different routines that do seem to work for us as individuals.
Other considerations: don't forget the exercises. I use the first section of the Lebed DVD and one of two other sections as needed, and it actually helps with LE control. I also bounce gently on the balls of my feet while I stand folding laundry -- don't know if it helps or not, but it seems to so I keep it up. When you apply lotion, when you lather yourself in the shower/tub, and when you dry yourself after, do it gently in the order and direction of your MLD routine. I clear my nodes before stepping into the shower, so careful washing, drying, and lotioning helps too.
Other thoughts about tricks that help throughout the day, anyone?
Hugs, Jo!
Binney0 -
Jo, Binney knows best, but I've tried to find reference papers for MLD and some show ONLY doing the chest. It's not just moving fluid--it's creating a pressure gradient, where you clear the receiving area to receive the fluid.
I do the neck. axilla, chest, abdomen, inquinals and then move to my arm. And finish up by clearing all the major points.
I'm also guilty of rushing MLD and pushing too hard, but I try and settle down and go slow and light.
Kira
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LOL Now if it only felt like Popeyes and the other one looked the same and we didn't have LE.
Kira that info is good to know. At least I know my PT taught me one good thing. Now that I have a sleeve, I will try harder to do my exercises. She only gave me a few because of my torn rotator cuff.
Hope everybody is having a great day. I would if my child would leave the room with her noisy DSIXL. I can't wait till the newness wears off. It is driving me up the wall.
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Jo, Sherry Lebed Davis has a bunch of videos on youtube:
http://www.youtube.com/watch?v=h2luK4JRAbo&feature=related
She has 45 videos on YouTube.
You can order her DVD from her site, or Amazon:
https://www.gohealthysteps.com/store/?productID=3
What's nice about the DVD is that you can just do parts of it--the lymphatic opening is 15 minutes.
Don't be guilty! Self-care of LE is time consuming and we all run out of energy, time and motivation--we do the best we can.
Kira
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Thanks Kira. I have never seen her videos. Love the bubble method. Going back to watch more.
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Is there anyway that I can view how to massage your arm on the web. I would like to try and work with my arm. I have not seen a LE specialist yet. I do not believe my insurance will cover it
any suggestions
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Hi again. thank you all for your shared experiences. To Rocket: it sounds like we have very similar complaints, so I'm thinking I might have truncal LE. When I staart getting medical services again I will ask about PT, compression, and massage. In the meantime I think I will try some of the exercies and massage on my own. Also, what is MLD, does it mean something about massage or exercises? Again, I want to thank you all for your posts on this site. And thank you to all those responsible for this site. You all are so inspiring to me. So many of us have so many questions, and don't know who to ask. Sometimes I get overwhelmed wth it all, and I have to stop thinking about it, but then I come back and know that I need to deal with it. If I hadn't ignored the lump for so long, out of fear, I probably could have avoided the total mastectomy and the lymph node removal surgeries. I had never had a mammogram until the one that led to the biopsy, that led to the surgeries, chemo, etc. It is great that we are all encouraging women to get checked, and about early dwetection saving lives. Anyway, thanks again. Have a great day and keep inspiring each other!!0
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NJ: there is a site that demonstrates MLD--it's the Northwest lymphedema center, founded by JoAnne Rovig of JoviPak--she just does the "sweep"method, but it's very helpful, IMO
http://www.nwlymphedemacenter.org/
DKS--I'd suggest you check out the stepupspeakout.org site, I think it will help answer some of your questions. MLD is manual lymphatic drainage, a kind of "massage" to move lymph fluid.
Here's a link to truncal LE on the site:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
Don't beat yourself up, we all do the best we can.
Kira
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thanks for the links and suggestions. I will definitely check them out. It's time for me to start taking charge of my recovery and to put in the effort to take charge of my body and my health. Thank you all so much for your encouragement. You are really helping me get motivated!!!!
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Jo, have him read this new page on stepupspeakout, it's for health care providers who need some basic information on LE:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
I always find I feel better after I do the Lebed exercises.
Kira
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I just want to post a cheerful one today. I went to my LE Support Meeting last night. I left feeling great. Our guest speaker was our hospitals dietitian. She gave us all great advice on our bad eating habits. lol I do live in the south and every one of us has a weight problem that was at the meeting. She also is a personal trainer and very into exercise. She said she would look into finding us a program. I am keeping my fingers crossed that she follows through. She thought she might have an idea of a program that would work with all my problems. I would love to do yoga but she did not know of anybody that did chair yoga and kept it usable for LE.
Oh well...as far as swelled. I am having a swell day due to my bad eating. I had Muncho's yesterday. Don't ask but for some reason they slow down my stomach problems and then supper at our meeting was a ham sandwich. LOTS OF WATER TODAY! Thankful my stomach feels good today.
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