GRRRRRRRRR I HATE LE..........
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It was my understanding that I would always have to wear the garments, which in my case is only a sleeve and gauntlet. However, I'm not as knowledgeable as most of these ladies.
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Keeping things in control does mean being compliant and wearing your sleeves and garments (unfortunately, forever).. If you don't, like me the last 3 months, you end up with swell and sleeves that are more uncomfortable.
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nomatterwhat,, it just sucks!! I would suggest that you start off wearing it only a few hours a day and gradually increasing. It is really hard in the beginning. I can generally wear my truncal compression for 12 hours now w/o going crazy,, after that,, all bets are off.0 -
Glennie - I've been doing better w/truncal compression now that I'm wearing the WearEase Sydney bra. It's not as 'sturdy' as my Bellisse, but does come up high under the arms and the back. More importantly - I've been keeping one on 24/7. It has a low "V" in front so it might not work for everyone, but my LE is usually under the arm, around the outside curve of the implant & along my side.
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I had vlnt surgery last week and am healing up quickly. I'm hoping I will have some good things to share in the future that may offer some hope. I can't type much so if you want to know more, please google. My doc is Richard Klein in Orlando.
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Hi there, I was wondering if anyone can tell me if numbness on a finger could be an early sign of lymphedema? My index finger on the same side as my BC feels numb, like when I touch it I can't feel it on the top and the side, very weird and I have been scratching my head as to what it could be?
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Minustwo,, I will have to look for that bra and see if it would work for me. I get tired of the breast binders as they are more bulky than a bra and do not work under certain tops,, like V necks.Maria: speedy healing! Hope you feel better soon. Hoping to hear good things from you about this!!
Fizzdon: hello. It is possible that the numbness could be the start of LE,,, seems worth mentioning to your doctors and getting it checked out.
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Thank you glennie19 - I will mention it when I have my next appointment.
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carol, that was so helpful to read! I had mine 3 years ago and for the first time am feeling tingling and heaviness in arm/hand, achy pain under armpit into pectoral area and chest area above breast (not the breast itself). If I push on the area it aches. I am trying to stretch it, hopefully will help!? I hope this is nothing serious? If I swing my elbow back, to squeeze the shoulder blades, I surely feel it.
Binney, thank you for the link
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it's almost like I'm sore from working out.. Is that normal signs of LE
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B123, I would say that my ache is indeed similar to being sore after working out--a dull, achy pain, but also with a tinge of a burning sensation I never get when I over-do squats or leg curls at the gym.
When I paddle my kayak, which I do sometimes for five days in a row, up to 8 hours of daily paddling, I get the most incredible feeling of a heavy arm, to the point I've learned to adapt my paddling so that I can minimize the work that arm does. I once put my pedometer on my paddle for the day, and I clocked about 19,000 strokes. But what strikes me is that the arm doesn't get what I'd call sore during all that work, so much as it gets incredibly tired feeling--and yet despite that heavy fatigue feeling, the arm is plenty strong and can still do the work. So it's like I'm getting mixed signals--sensation says 'exhausted arm' but in reality, the arm is plenty strong and can continue to work.
I'm in my compression sleeve and gauntlet as I do this, and I know perfectly well that I'm pushing beyond what I should with a stage 0 LE arm, but so far (knock wood!!!!), I get some visible swelling toward the end of those paddling days, but the night garment and some pre-bedtime MLD make it go away. I should disclose that I work out in a gym at least 2x per week doing strength training, following the PAL Protocol for safe strength training when we have or are at risk of LE, so I've conditioned the arm to do a lot of work. (New folks reading this page need to know about the need to condition slowly before asking an LE arm or an at-risk arm to do that kind of repetitive resistance work.)
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carol, you are very active so I can see why it happens unfortunately, that's good you have a good handle on it. I have a sleeve that I used after surgery implants, worked great! But here I am 3 years later and I'm feeling tight under armpit into pectoral muscle, achy ness in chest above right breast toward the armpit, some pins/needles in tricep and some numbness/tiredness in hand. Is this lymphadema or is it something more? I have never had it son i dont know really what I it is. my mo told me on the phone that it sounded like it was lymphadema. My shoulder will crack here and there to.
Thanks for your help
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I don't know, B123, as that seems like a lot going on over a diffuse area. It could be LE, and best way to find out is to meet with a qualified LE therapist. Is it possible your implant has migrated a bit and pushing on a nerve? I don't have any knowledge or experience to go on for that thought, but for some reason when I read your last post, it's the first question that came to mind. I'm so sorry you're having these issues. I hate uncertainty as much or more than hating life's physical crap when it's finally diagnosed! I know it's so frustrating when we don't know what's causing discomfort.
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yes it's is Carol, very frustrating. Thanks for helping, I appreciate it
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I'm a kayaker too. Don't go as long as Carol. I've found it is great for my arm. I do work up slowly each season before going too long. The good thing about a kayak paddle is that your other arm can much of the load off the LE arm. I've found that my sleeve is a problem, so go without. We are all so different in how LE effects us.
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Doxie is right...don't go for as long as I do. I've been kayaking for years, and I'm actively working on arm and torso strength all year long. We are indeed all different. LE is by all means NOT a one-size-fits-all condition.
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No grrring here cause LYMPHEDIVAS GLOVES are here! Saw a pic in Pathways LE magazine
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Divas has an ad for their gloves in this month's NLN LymphLink, too. Very nice!
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Coming to the experts.... Does anyone know if this is a "valid" accredation?
A friend recommended a massage therapist to me, she assured me that he is lymphadema certified. I went yesterday and it felt good... want to make sure it's okay.
Jen
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Jen, ACOLs is indeed a valid credential. It managed by Joe Zuther, who is a true friend to the LE community. Joe is a founding member of LANA, the certifying body for LE therapists, and he's also the Lymphedma Guru on Facebook. What I appreciate so much about him is that he makes himself available to patients, both via his FB page, and through his lymphdema blog: http://www.lymphedemablog.com/
He will respond to questions posted to his blog, and he helped me out early on in my own therapist search, validating my sense that one of the therapists I'd spoken with was giving me some serious misinformation. He's also helped me with a lymphdema advocacy project. The ACOLS school is well regarded, so your therapist should be well trained.
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Ah, Carol, thank you SO much!! It doesn't hurt so much either that he is a hunk!
http://www.iyasumassage.com/about.html
Jen
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Jen, what a hoot! Looks like you've got one well trained, caring individual there. People don't put themselves through all that training just for a pasttime. And I'd say that his bodybuilding means that he has a fine-tuned understanding of muscles, joints, and all, so learning about the lymphatic system must have been a piece of cake. Good for you to have found him!
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Glennie: WearEase has a coupon for free shipping this weekend. In case the link doesn't work, the code is EASTER. Also there was a pop-up window for a $20 coupon for new shoppers. Since all this stuff is expensive I thought I'd forward.
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I can't find anything on the Lymphediva gloves coming out, I checked their website. Joe Zuther answered my questions both on his blog and on his FB page!
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My sister n law wants me to go with her to Paris next April. What precautions do they want you to take for long air plane flights?
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HomeMom.....When you are in Flight...you have to wear your garments....and I do believe to keep them on for a time after landing...Liz
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Homemom, the first precaution is to take along another person who is really familiar with lymphedema (and I'm raising my hand over here...lived in France for a year and would love to visit again!).
But seriously, wear your garments in flight as Liz suggests, and if you already have a lymphedema diagnosis, you might consider wrapping with short-stretch bandages instead of wearing the sleeve and gauntlet or glove.
It's also a good idea to walk as much as you can, including some aisle strolling during flight, and to stay well, well hydrated. Avoid salty foods --not so simple on airport and airline fare.
Do the fist pump every hour or so (arm up in the air and pump your fist fifteen or twenty times, to stimulate lymph flow). (Ignore stares...let them think you're watching a sporting event and celebrating your team's great maneuver or win!)
Be mindful of lifting luggage. Lymph production is thought to increase when we subject our arm or trunk to unaccustomed weight, and luggage can be heavy. It's also putting more stress on the arm and trunk when we lift it far from our body, i.e. with arms extended. So, either have your own personal luggage lifter, or try to keep it light, and just be mindful of ways to minimize the weight on your arm and trunk, whatever you're hefting.
Finally, on your affected or at-risk side, be careful about hanging a heavy carry-on or shoulder bag, as the strap can put too much pressure on the lymph pathways.
Mostly, have a wonderful time!
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Carol, LOL you're invited and guys, thanks for all the tips! What about the fact you might fly and sleep on such a long flight?
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Homemom, when I do an overnight flight, I take off my sleeve and put on my night garment for the hours I think I might actually sleep. Or, some women wrap during that time, redonning the sleeve on awakening.
If you don't use a night garment and don't wrap, I've read that it's probably the lesser evil to wear the sleeve. The worry about sleeping in a sleeve is that it might wrinkle and cause a kind of tourniquet effect, without our realizing it. Also, in sleep we're less active, so the sleeve's compression against our lymph vessels does not get the sleeve's true benefit, which is to give muscles a firm surface against which to press, which in turn serves to push and flex muscles against lymph vessels, nudging the lymph along.
But unless you're taking knockout drugs, I doubt that you'll have any but the most fitful sleep, with plenty of shifting position, moving the arm around in the process. In a more doze-like sleep mode, you're less likely to have a pinched sleeve without realizing it, and you're moving a bit, so the muscles are pushing against the sleeve.
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Argh.... in Key West this week for spring break. Having an amazing time. I'm wearing my sleeve and gauntlet but I'm swollen. More than typical, and in my hand and fingers which is new.
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