GRRRRRRRRR I HATE LE..........
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MRock, the question here is, what does your therapist have YOU doing in between therapy sessions? Are you wrapping nightly, wearing compression garments daily, moisturizing and protecting your skin religiously, doing self Manual Lymph Drainage daily, keeping up with the prescribed exercises, noting and responding to changes in your LE control (diet, weather, travel, strain or injury, exercise, etc.)? And what do the therapy sessions involve? Manual Lymph Drainage (massage) and wrapping? Measurement and LE education?
There are so many variables here, and they all matter to your overall LE control. You're so right that we're all different, but there are several standard practices that add up to great control, and over the long haul most of that work is up to us in the form of diligent self-care. It's a steep learning curve to begin with, and it's a challenging commitment to maintain, but it sounds like you're determined and on the right path. Brava!
Hugs,
Binney0 -
Thanks, Binney, for your quick response!
I live overseas (Italy) and the healthcare has been very good throughout all this ordeal, with the exception of LE education. Their MLD is excellent, but LE education, no. For example, they claim MLD isn't teachable, so I've had to teach myself MLD through YouTube videos - and I'd heard of it thanks to you all! That's why I'm so grateful for all of you, and I thank you, Binney, in particular for taking the time to make a comprehensive self-care list.
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Hi everyone. Looking for any ideas as to what might be causing this pain. I have LE in my arm and wear a day sleeve and a night sleeve. It doesn't cause me too many problems these days. I live in a remote area so I have learnt to sort out most issues myself.
I am in agony, I managed about an hours sleep last night. My arm is so painful, it feels like it should be swollen to twice its size. The arm and hand look perfectly fine though, no swelling, no bites, scratches or broken skin and no sign of infection. It is well hydrated and bounces straight back when prodded.
It has been about 24 hours, I don't have a temperature and feel fine apart from the pain. I have my normal appointment with MO tomorrow.
Thanks
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Freya. You don't mention a glove or gauntlet. Wearing one is a good idea so the fluid doesn't get pushed into the hand making it difficult and painful at times.
You don't need to be swollen to have pain as most people think you do! Looks like your watching for infection so that is good.
I hope mo can sort it out but really it's a qualified lymphedema thetapist who shouldbe looking at your symptoms. No fun having LE and stage four. I can tell your a brave soul trying to figure out your problems so you can march forward!
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Thanks for responding Hugz, I always wear a gauntlet. I'm at a loss as to why it is suddenly so painful. I went through a bad stage with constant cellulitis, but lately it's been good.
The closest LE therapist is over 5 hrs drive away, I do my best to get there a few times a year, but it's mostly just me with some guidance from my MO and lots of reading.
Thanks again
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HI..I was wondering about the Lymphedemia screening before surgery. I accidentally missed that screening. I am sorry you have it.
I have a lumpectomy tomorrow. I am Her2positive with a 1.9 tumor on right breast. I think they were going to do a sentinal lymph node on the left side. I was supposed to do a lymphedemia screening and the email was lost in my email. If I don't do the screening before surgery I won't have a foundation for any lymphedemia.
I hope to avoid getting it as I am very active. I noticed you had no radiation either. I was wondering what you think about radiation now that its six years after your surgery.
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digiti. Welcome. If you have no time then at least measure yourself around on top of the wristbone, elbow crease and top of arm. Top of arm is tricky so use a freckle, scar, vaccination scar or sharpie pen dot as a reference point to measure after surgery and beyond.
Have friend measure. That's easier. Keep arms hanging down relaxed and you will do that exactly the next time you measure. Measure both arms. Usually your dominant one is bigger.
Then Make an appointment with an lymphedema specialist as soon as you can to get better base line measurements and be taught to watch out for lymphedema.
You can even take pictures for a reference.
This is a good start because your going in tomorrow. Remember you may swell anyway from surgery. Ask if hospital has a lymphedema educator to
Check in with us! Knowledge is power
Ps. I'm very active and you will be to. Just maybe a bit more careful
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Hugz4u Thank you for helping all of us with advice and kindness. Lymphadema is such a personal cross to bear. No one around me understands it... esp since I'm not noticeably swollen.
Please don't grab my arm! So many ppl grab arms! Even when I wear a sleeve?! 🙄
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Jackie. We all help each other!
My grrr is handshaking. It's hard to avoid and some people squeeze so hard I can feel it ten minutes later. Sometimes I hold up my hand and say sorry I can't I have a sore hand. Of course then the convo turns towards my hand which is not always something I want to talk about. Grrr
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hugz4u...
My grrrr is people not understanding how uncomfortable LE is...and me not wishing to do anything in the evening because of my arm. I can't stand clothing touching my arm. The sleeve helps a lot! And please ppl... stop touching my arm! Do u not see the sleeve. The dreaded Hug and arm squeeze!
Lol! TGIF
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Yes it's so annoying.
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I'm still figuring this whole LE thing out! My arm isn't swollen but at times feels pounds heavier that the other! My surgery side has been swollen since February no one sees that. I was having a hard time understanding that "yes you have LE " when there truly isn't that much difference in my arms. Thank you ladies for helping us newbies!
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no prob. We are all in same boat and you will to be able to help someone down the road. That's how we stay strong by banding together. We pay it forward and are a great little community!
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Today's grrr from yesterday's dinner party!Was at party of 30 people.
Someone I never met comes up and says do you have lympha. I say you mean lymphedema. Yes I do.
So do I she says rubbing her arm. Do u wear a sleeve, I say as I'm in full garments and see no sleeve or gauntlet?
No I gave that up long ago. Nicely I explain how important it is for me to be proactive to keep from progressing.
She says I'm from Florida it's too hot to wear a sleeve.
I say yes I like to spray mine occassionly with water to cool my arm. She looks at me dumbfounded while three other couples are listening in. I showed her my wounded finger and tell her briefly that we have to be so careful and watch our selves.
She says yah I was taught about le but I don't care anymore, as she rubs her arm.
I finally got mad at her belligerence and calmly said, oh is your arm getting woody yet?
She squeezes it and just looks at me dumbfounded again.
Again I say we need to look after ourselves it's so important yadda yadda yadda.
1/2 hour later she finds me at the kitchen table and announces to 5 more new couples sitting there that we have the same disease and engages me again and then gets into chemo,rads and everything. She goes on how awful it was driving 16 days for rads etc etc etc. Almost seeking attention. Then says how many days did you do. I just said quietly 35 days and shut up like it was no big deal because she was wearing out her audience.i just played along so politely as all ears were listening and educated a bitwhen she talked about le.
Grrrr grrrr and double grrr!
I just wanted to forget le one night and not be centre stage with the dummy ruining my evening. Thx for listening to rant. Was so disappointed I couldn't even tell my family what happened that night. I just want to forget about it and send the lady back to Florida with my sleeve wrapped around her neck. Grrrrr. (Not really. I'm to nice to do that but sure felt that way)
There's a good chance I'll bump into her next week and I'll warn her to breathe deep, pump her arm and walk and water on plane ride back home and tell her to watch for increased swelling in her already swollen arm and that I wish all the best for her managing her symptoms in the future. She can do whatever she wants with that information. I'm done with her stupidity.
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Hugz You are so funny, I really need a good laugh. I'm going for my PT this Wednesday to learn how to protect myself. Will be lurking here more and more so I can learn few things from you and other
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We will ever so graciously help you on your le journey. Make sure she has good qualifications to do manual lymph drainage if you need it. No fly by night lymph drain course are allowed.
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I don't think I have le yet, will be doing my measurements since this is my first meeting. I want to learn how to protect myself for le, maybe some methods to message my incisions. I am still haven't finished my chemo maybe I'm too early for PT?
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Paulette ohh you so smart. Yup get measurements. Keep eye out for weird arm sensations like tingles, heavyiness, tightness or weirdness which can be signs. Le beast is reversible in earliest stage. Good news if you know this. Ah must turn out lights.
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Hugz, I actually appreciate your rant! I'm so sorry about LE taking over your evening out--nobody needs that. Living as I do in the desert I too have heard the "it's too hot to wear garments" argument, but that's invariably from women with considerable swelling--since giving up garments leaves them with no way to control it. They're discouraged and trying to be philosophical, but none of that helps the LE any. Finding ways to keep cool while wearing garments or wrapping takes some ingenuity, but it's well worth the effort, since the heat itself encourages swelling--simply not containing the swelling is NOT the answer!
Paulette, brava for being smart and proactive! Please let us know if/how we can help.
Hugs,
Binney0 -
Binney and hug - I know le is a beast I have friends got that beast behind them, I don't want him too close so I need to make sure he is far away from me. But shit happens so I have read this posts to prepare myself. I hope the PT will help and they should give me sleeve to start. I don't know how can you all deal with all the heat and the garments.... gosh must be tough! 🙁🙁🙁
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Hugs. . .thanks for the rant. I probably would have said something totally sarcastic to her. BTW I never equated the tingles and numbness in my left arm with the LE. I always thought it was a circulation issue since it started with one of my MRIs before BMX.
I'm back to the LE specialist on 10/2. It's been almost a year. I still can't wear my wedding ring after having it cut off two weeks after my Exchange revision last March (hand swelled badly) and having it sized up a whole size. I've kind of gotten used to wearing in on a chain around my neck, but I am tired of the swollen fingers and arms and I have to get measured for sleeves so I can fly.
Scottie
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I too appreciate the rant. Sometimes we just have to let it out. I get really tired of people saying - why do you wear the darn sleeves anyway. Or - it will never happen to me.
My LE has so far been contained to mostly truncal & breast. Just got back from a trip & discovered I'm more comfortable on the plane wearing both my everyday compression bra from Wear Ease and wearing my heavy duty Belisse compression bra on top of that. Worked great. Since I was coming home to the heat, I didn't mind the sleeves until after I landed. As usual, I take off the gauntlets when I get to the baggage carousel to pick up my suitcase, but leave the sleeves on for at least an hour - about the time it takes to get home.
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I need some advice from the experience ladies here, I had my surgery 3.5 months ago, I still have some swelling on my upper arm. I went to see Le PT for prevention and learn about movements for my left arm. She ended up wrapped up my left arm up all the way to my hand, asked me to keep it on for three to four days. I really can't deal with this now since I'm still doing chemo. Honestly I have enough stress just dealing with my weekly chemo.
On my first evaluation meeting, the PT even suggested me come back after radiation because dealing weekly chemo with the PT appointment will be too much for me. Since my insurance approved I went ahead to make appointments. So I went home and took off the wrapping, too overwhelmed for me to take at once
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PauletteK - I completely understand why you wouldn't want to deal with the LE issue while coping with chemo. We have enough stress on our body due to surgery plus chemo. It seems like once we're diagnosed, we're put on a fast train to...where ever. Don't get me wrong, I appreciate all the help we get, but sometimes it's good to take it easy, relax, and heal. If your gut is telling you to take it easy, go with it. (((Hugs))).
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Meg - I have been on the fast train for the last six months, I'm close to the end of the rope. Stress level is high so I can't take it when the cup is full. Thanks for the reply and hugs!
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3.5 month post op a lot of people have surgery swelling still and not le swelling but yes you can get le right out of surgery. I'll post as if you have le because it sounds like you have been diagnosed with it.
Sounds to me like you have enough swelling in your arm that she wants to wrap to get it down to a smaller size and then fit you with a sleeve and gauntlet or glove to contain your size so you don't get a larger more bothersome arm later down the road. This is one part of how we control le.its decongestion stage.when your in le garments your stabilized which would be awesome.
Go back and tell her your overwhelmed and need some different ways of taking care of your le while your in chemo. She must teach you manual lymph drainage.self care and how to wrap. etc. Ultimately if she has wrapped you there is a good reason to keep it on. But I get it, your in active treatment for cancer as we speak. Your stressed. No easy task for sure. There are bandages that mimic wrapping that are much easier to put on and help move fluid out of arm. Ask to be fitted with that but the type of wrapping you have been given is the gold standard forle treatment.
The thing is that if you remain unproactive things could get really bad in the swelling department because once le progresses its hard to control. Yes it's a steep learning curve but so necessary.
See my last post today in "kick butt thread" for some le tips to help fluid move while your unwrapped and for everyday self care.
I'll bump up the tai chi breather exercise which will move sluggish fluid and it will calm you to! Hang in there!
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I didn't diagnose with le, I saw friends have le so I take proactive action and asked for Le PT. I am overwhelmed this week and the taxol or dry skins made me kind of break out with rashes, I just can't have wrapping for days. I would go back to order the compression sleeve if they can help me to order so I can wear the sleeve during day time.
She taught me how to do some breathing exercises and I will do the exercises to help my arm movements. Thanks for the tai chi breather exercises, I should learn tai chi after chemo treatment. My sister in law is a tai chi teacher. I feel like such a loser yesterday 🙁🙁🙁🙁
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Paulette your are no loser. Just having a bad day. Your more than welcome to express yourself here. Press forward and march thru girl. You will get there.
Hummmmm....I'm missing a beat here. I don't know why she would even wrap you if you don't have le. Perhaps to get the post surgical swelling down is the only reason. Is your le pt well qualified to treat le? Do you see certificates on her wall saying she completed manual lymph drainage course? Ask if she is certified.
So if you don't have le you sure don't need to wear le garments daily. Learning self care is a great idea though so you can watch out for the le beast if it rears its head.
If you fly you can decide if you would like garments. Many people with Nodes out wear both sleeve and hand protection proactively in the air because height and cabin pressure can cause swelling but not always. It would be taking a chance if you didn't wear them. We have faulty lymph systems so it's a good idea.
Before I had le my therapist suggested if your doing heavy exercise wear them but take off about a hour after exercise when the arm normalizes. Raking leaves would be heavy exercise because it's repetitive and we are not use to raking leaves because it's seasonal work. Long periods of gardening ,at the gym, Moving heavy boxes on moving day etc. Be watchful for any weird feelings and take frequent restbreaks.
Your so smart to be proactive because in early stage le is reversible. Yeah!
Show those tai chi exercises to your friend and have her go over them with you. The breathing part is most important because it stimulates our sluggish lymph system. I would recommend these as proactive treatment. They are proven to work in a clinical trial. They reduce stress to which is good for you during your trial some period. Take care and if you have questions that's great. Post them.
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hugz4u - you are awesome! Thank you so much ! I took a screenshot on your reply so I can read again later so make sure I don't forget anything. I think she wanted to make sure my post surgery swelling goes down fast she was being proactive. I will order the sleeve so I can wear during the day time
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we are all helping eachother here. Great ain't it!
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