Kicking LEs butt!! Exercise & Self Care Log
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I am so excited to tell you my DH got our smart TV hooked up to the WiFi and I can now exercise to a wide variety of exercise videos! Just did 30 minutes of cardio. Stay safe ladies
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Very cool, Vargadoll! I've tried one Zumba video I found on YouTube so far and have collected several others to try. I was appalled that I struggled so mightily with the dance steps. I was the co-captain of my synchronized dance team in college and have done competitive dog obedience (like dressage with dogs) so you would think I would have this skill, but I was flailing around like a Raggedy Ann doll in a high wind. 😲
There may be a better topic to pose this question, but since this thread is active, I hope it's OK to post here...
For those of you with truncal lymphedema, how did you know you had it? I am obese and my torso is very asymmetrical due to a leg length imbalance (two hip replacement surgeries in two days due to an error, kidney failure despite no prior issues, blood transfusion, doubled hospital stay, good times!) and losing 100 pounds. Swelling isn't obvious on me as it would be on a slender person. I've noticed that when I wear a bra all day, even a soft cotton sports bra and regardless of the brand, design or chest band size, my armpits (presumably the lymph nodes?) become tender. My left / LE arm is about 25% larger than my normal arm so that's readily visible. I only had three nodes removed during my SNB, all negative. I never think to ask my MO about the matter.
Thanks, Lyn
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VLH - no matter how many nodes (or none) we are always as risk. I have truncal & breast LE and suggest you get a referral to a certified LEPT therapist. I wear a compression bra 24/7 (and that's not always fun in the Houston summers) The link below is a good place to get started.
https://www.stepup-speakout.org/
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Thanks for the quick response, MinusTwo. Have you experienced the tenderness I mentioned?
I saw an LEPT therapist for my initial diagnosis, referral to a boutique for compression sleeve / glove, Flexi-Touch pump, etc. She asked about my torso, but without a baseline measurement before surgery and given the challenges noted above, I don't know if there is any truncal swelling. I can't stand anything tight (panic attack response) and am always hot so being compliant with a bra would be tough. The pump is a finite time period vs. wearing all day so bearable. I don't recall seeing armpit tenderness when I reviewed the Step Up site before, but good idea to revisit it.
Lyn
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Yes - I have tenderness around my armpit. Also at the side & bottom of the R side breast, and the underside of my arm from armpit down. That's the side that I had ALND. I have less pain & fewer problems when I do regular exercise so I hate that Silver Sneakers is shut down - and my chair yoga class. I'm trying to walk 3-4 brisk miles every day, which is no doubt good for my bones & heart but doesn't cover the needed stretching.
One of the things my LEPT told me is compression bras (vests) have to be high up under the arms to work with truncal LE - and high up on the back. I find this Sydney Bra very comfortable. I can pull on from my feet, there are no tight bands or hooks or zippers, and I haven't had a problem with it riding up. I really do wear one 24/7. This company is good helping with selections if you call & returns if you need that. Woman owned & made in the USA.
https://www.wearease.com/products/sydney-bra?varia...
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Thanks, MinusTwo!
Lyn
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I have truncal and beast LE. I do not have tenderness mine is more of a heavy feeling. It hurts to not have a bra on because of the heaviness. My armpit will get a lump in it occasionally. Feels like a golf ball. That’s when I head to my LE therapist.
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Re-reading the truncal LE information on the Step Up site, I doubt that is my issue. I don't have the edema they discuss / illustrate nor do I have the heaviness you and others have mentioned. My nodes have never displayed as swollen at my oncology exams, but my pits feel sore but a few days afterwards, even though my doctor is very experienced and not rough. I have tons of tender points related to having severe Fibromyalgia for 30+ years so maybe the nerves are just overreacting in that area.
Thanks again, Lyn
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Hi. I am a newbie on LE. Just found out today. I have it in my breast. I am to start massaging and compression bras. I had 2 from post surgery and ordered more today. I have a follow up in July or call if swelling increases. Any advice would be appreciated. Thanks
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I started some of the exercise videos and now have tingling at the scar site. Is this normal with LE?
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Petite - I never experienced that but maybe someone else had. Did an LEPT recommend the videos? I'm never sure about exercises from on line. Also are you wearing compression? And maybe a sleeve & gauntlet too depending on the exercise?
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MinusTwo, Yes, I now am wearing a compression bra. She ordered an ultrasound and I have a follow up after that. The exercise video was recommended on an early post to this site. The massage seems to be working. In 2 days I have notice the swelling around the scar has gone down. When I do the video, today, I will see if my breast tingles. Thanks for responding. This hit me like a ton of bricks.
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newly diagnosed, Monday 4/13. I was so scared finding hard spot on BC left brest, but on opposite side. Monday I had Mammo, ultrasound and Chest CT and they came back saying it "just" lymphedema, just kymphedema what!!! I was referred to PT but they are closed because of Covid19.. what compression wear do you all preferr. I have 2 marena bras, but they make my arm pit sore. My scar from sentinel node removal, only one removed, has always been tender. I finished Rads Feb 7th.
I can't see to find good videos to do at home lymph massage ... i tried to get Lymphatic Mojo by Dr Perry, but I think he is a little advance for me..
What compression wear and what excersises do you all like? Do you use Ice or Heat? I am also battling newly anastrozole bone and joint pain so moving is a bit slow. I only 50 but I feel 100 ...
Thanks for any and all information. I will start going through some of the 234 pages.
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Kimmh012, I'm sorry you find yourself here, but welcome. I know it's better than scary cancer news, but "just lymphedema" like it's nothing? Oy!
I'm nearly 4 years out from diagnosis and my sentinel node biopsy scar is still tender. I don't know why that persists, but neither the surgeon nor oncologist could detect anything awry. My sleeves and fingerless gloves are from Juzo only because that's what the small store my lymphedema specialist referred me to carries. I also have a pump although those can be pricey ($5,000-ish?). I'd already paid my maximum out-of-pocket and my insurance company authorized the device promptly so I was lucky to be able to get one.
Lyn
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Kimmh012, I found out 4/16. So, I am new, too. My MO had me meet with an ARNP a the cancer center. She taught me a massage technique. It seems to be working on the swollen tissue around my scar. After you were diagnosed, did they provide you with any information?
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petite, no information from breast surgent NP only went over mammo & ultasound, just that I would be referred to Lymphedema therapist, then Friday I got a letter from PT saying they are closed because of Covid19.
I did find a Lymph self massage, I have done it a few times but I am always so sore after. I wear compression bra 24/7 but my breast keeps growing.
I will be making phone calls tomorrow.
Kim
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LE massage should be only the very lightest touch with your finger tips. Not much more than a whisper. It shouldn't leave you sore.
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kimmh012, That sounds do similar to what I am going through. It seemed like it was a little better around the scar, but yesterday it hurt. This morning it seems a little better. I don't have a repeat ultrasound until July and it sounds like the LE therapy won't be until after that. Mostly due to COVID19 backlog. I worry about lifting anything. It is hard to do any kind of chores. I will be glad to get more information about what I can and cannot do.
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minustwo, thats what I was thinking, should be no pain. I did soft, petting a baby kitten soft, when I did the MLD. But, my left breast and arm are pretty sore/painful and swollen in in rest. like I have been lifting weights non stop and trying to lift over my head is painful as well.
Petite1, wow, I would not stand for LE PT until July. I always try to be on the offensive side of things, lol, and very proactive advocate with everything with doctors or lawyers, etc etc. Seems they only do what you ask to tell them, can't believe we have to tell Onc to order extra blood tests since they already drawing blood, ugh.
I called and left a message at the LE department I was referred too and asked for a Vitual Visit as I feel I need compression garments and jovipak/chip bags ASAP, that are all covered 100% through my insurance since meeting my deductible.
I have also called Dr. Perry, StopChasingPain.com, who does a Lymphatic Mojo class. I have seen alot of his videos, but nothing specific to breast/chest/truncal MLD and lymphedema, hoping he writes back, fingers crossed.
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MinusTwo, I am probably massaging with too much pressure. My SIL said the same - very light touch.
Kimmh12, Since my PCP has to do the referral, I will go straight to him and should be able to get it a little earlier. In the meantime, I will do some local research to find out where I will need to go. (rural area)
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petite1, I am all to familiar with small town, small minds. I drive 3hours round trip for all my treatments ... Jan 7-Feb 7 drove 3 hours every day for radiation. I did find a Breast Massage video and my breast felt better after.. i have my Hereceptin I union next week so I hope to beable to visit LE and get a few assessors, swell spot/chip bag for breast and cleavage and or a script and I will buy my own.
Here is link for breast massage, hope it works.
https://breasthealthproject.com/breast-health-101/...
"Don't worry, Be Happy...Stay Safe"
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petite1, I'm sorry to hear that you're not getting help soon and you certainly need to know how and what to do. I did not get lymphedema, but I am at risk for it due to a mastectomy and sentinel node removal. However, I always do lymph draining exercises (not MLD, which you should do if you have LE), before I do any other exercises or sometimes even when I'm not, because it feels good. In fact, just doing them every day is good for many people since our lymph is a major player in our immune system. There are videos on YouTube that will show you how to do those and it can help right now, even if you don't exercise until you know what you're allowed to do. As long as you have full mobility in your chest and shoulder area and are recovered from all surgeries, they are safe.
Exercise and a healthy diet are really important in lymphedema prevention and management and you can work on those areas now, with the lymph drainage movements and making sure you have an anti-inflammatory diet and anti-edema (low salt, high potassium) diet.
But get your appointment with a LE therapist as soon as you can, good luck!
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Hi everyone,
I am just joining this group after having bilateral mastectomy and axillary lymph node dissection on left underarm. After drains were removed I got cording in left arm. What is MLD? and is LE just lymphadema? Can you tell me more about Lebed exercises? Is there only one dvd for it or multiple? If multiple what do you recommend? Or are there free videos on YouTube that are just as helpful?
I did watch one video of someone at Dana-Farber Cancer institute that was somewhat helpful. Interestingly I adapted my post surgery exercises and added aerobic dance steps to music and came up with something similar on my own, but I am getting tired of the same routine and looking for other options.
Thanks, I had never heard of Lebed method until scanning these posts!
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TxMom - MLD is manual lymph drainage. You should be measured by a certified, trained LE physical therapist and she or he will teach you how to do MLD. It is great to be looking for videos on your own, but you really do need to start out with a professional who can make individual recommendations since each one of us is different. Take a look at the link below for a basic introduction to LE.
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TxMom3, I have been doing the Dana-Farber video. I have a little trouble with the Lebed dance, but I can do the other stretches and exercise. I will be glad when all the referrals and authorizations are in and I can see a certified LE therapist.
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Lymphedema sucks, sorry you are experiencing it. What is available, what is covered by insurance ( if it is covered) really varies. I had nodes removed in Left-Axillla in 2009 and 2016. Lymphedema struck in the R-arm in 2019. Turned out to be a new cancer. I do see a LE therapist who recommended compression sleeve and glove ( referral had to go through oncologist for insurance). Went to speciality store, fit is important, also could be billed to insurance who picked up some of the cost. ALso there are different kinds, and some might be a better option. Recently the therapist suggested a home pump which I have just started using. Very Expensive, insurance picked up much of the cost. I also do self massage 1-2x/day. LE is a lot better than it was last July when I first saw the therapist, but still there, and I have been told, always will be, and I will always have to work on it. I found this video on self-massage by the India Lymphedema Foundation helpful https://www.youtube.com/watch?v=sS_WzAdfcSk&feature=youtu.be
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BlueGirlRedState, Thank you
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How so I know if I have LE? My right axillary area where they took out the lymph nodes is swollen and I can't tell what is what and no want wants to really help me. I also have a hard cord under the scar where the lymph nodes were removed. I found out that this is a cord and no one will help me with it or give me any instructions. After my surgery I got a seroma and the only reason I knew anything about it was this website. I feel lost and most of my care team, if you want to call it a team are men. There is no way that they can every understnad what it is like to have breast cancer.
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Darlene - It's been documented that the average doctor gets less than one hour of education on lymphadema in the 6 or 10 years of medical school. It's up to you to push until you get a referral to a trained, certified LE PT. My breast surgeon, my plastic surgeon, my oncologist - all said doesn't happen, very rare. I referred myself to the doc in charge of a wound care & LE department at a major medical center. He got me to the proper therapists for treatment & training.
When I had a cancer recurrence and lymph node dissection - same story. Except this time the radiation oncologist recognized the problem immediately and sent me to a trained therapist. She did initial measurements, trained me in MLD, gave me exercise sheets, ordered sleeves & gloves and continued to see me once a month for a year for additional review, massages, training & support.
You must advocate. Maybe it will be your OB/Gyn who will recognize the need to at least get measured. The squeeky wheel gets the grease. Below is a great link for initial information and how to find trained therapists.
https://www.stepup-speakout.org/
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Darlene - I checked out that stepup-speakout website that MinusTwo recommended and it was great information. Thanks MinusTwo!!!
I also had cording after my surgery and was fortunate to start physical therapy right away. Most of my hour long session was massage, but she didn't really talk to me much about doing massage myself which I am reading more about here. I did have the Tactile Medical Flexitouch pump recommended to me and was able to get it free since my out of pocket costs were met for the year. I highly recommend one of those if you can get it. I am about 3 months out from my surgery and with exercise, massage and pump can now raise my left arm over my head again even though I feel stretching (started out at only about 90 degrees out). According to website that is typical recovery period, so hang in there.
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