GRRRRRRRRR I HATE LE..........
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Well I'm back from CA and we had a fabulous time---drinking wine and eating--that was our main agenda. Visited may vineyards and had tastings at each one. I loved it!!
anyway, I wore the sleeve and my glove which covers each finger. It wasn't too bad. I wore a light jacket and you barely saw it except for the glove of course, but who cares??
Jenwith4kids--I see Rebecca Golden in Cherry Hill. She is affiliated with Penn Good Shepard. She's great!! Let me know if you want her number but I always google it!! LOL
I don't wear the sleeve everyday, like I said, mainly for exercising. We even went hiking on our last day in San Francisco, and I just wore my glove, not the sleeve. It was soooo hot!! Rebecca said I can wear the sleeve only because it goes waaaay past my wrist. She ordered it like that knowing that I just want to wear that some days. However she will proabaly scold me for not wearing the sleeve on the hike! My arm seems fine now. We got home earlier today.
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I see the grrrr thread has been slow. Does that mean we are all loving our dang LE. Not me, here is my latest complaint. Come on ....we all have done it at least once......punched ourselves in the nose while putting on our sleeve. I solved this problem by purchasing a slippie which makes donning heavenly ... all for a mere 25'bucks or so. Well the other day I didn't use my slippie and my fist came up full force striking me under the bridge of my nose! It hurt so bad I got tears in my eyes and I thought my nose was broke for sure. Fortunately it wasn't. Well that's my grrrr gripe for the week. I know you girls will understand fully because we all have punched ourselves a few times haven't we? Learned my lesson and bought 3 new slippies, for overnight visits with family. one for moms house, one for sis house and a extra as my old one was wearing out. I will never don again without my SLIPPIE!0
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hugz4u - thanks for the reminder. Sounds funny like Abbott & Costello, but it's really not since we've all been there.
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The Summer has been Hard to be Compliant with the Heat!! At, least for ME!! Also....I still feel I am the ONLY one in Jersey wearing a sleeve...for I get asked all the time!! Now, do not tell me to educate people about LE....IT just does not work......I think I am encountering a lot of Busy Bodies.....HOW come they are all Women??? I, have been asked over and over by people who Forget?? Good Lord....Give me Strength! Liz
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Been there, done that.
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Hi ladies, sorry I haven't been on but I am doing ok. Busy summer with all the grandkids, new dog.
I am now in a diet research study at the oncology center and it takes alot of food prep for the week as I am working 40 hrs a week too.
I had a revision surgery in july and still recovering and spitting stitches. For dissolvable stitches, they sure don't dissolve! Healing up better than last time and no open wounds.
(I have been researching this part and how it pertains to LE) - Been trying to figure out how to exercise without going down our mountain as it has started to rain. Talked to a few people and got a Oval Jogger (exercise trampoline) with handle. Starting slow - like only 5 minutes at a time. Doing well with it so far. Found out you don't have to jump high and your feet don't come of the mat, but still gets my heart pumping a bit. I've been a couch potato for too long. I wear my sleeves and haven't had any swell so far. Let you know how it goes.
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Excellent Gma,, keep us posted. I keep wondering about one of those rebounders too.
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I usually only do aerobic exercise outside, but when the winter weather is nasty in Chicago, I use my rebounder. I used it during radiation and it helped a great deal with fluid build up, which turned out later to be truncal LE. I've found the rebounder is a great way of controlling LE for me. It works like jogging does for me. The bouncing and deep breathing help more lymph fluid around.
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Sandcastle--I'm in NJ!!! So we can wear the sleeves together! Lol
I'm in southern NJ--Medford. Where are you?
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OMG!! Someone in Jersey with that Damn Sleeve!! I am at the Shore......Brick....Close to Toms River
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My lymphedema is so out of control and always has been. I started seeing someone (LE Specialist) almost immediately after surgery. I don't know what to do. My arm is hideous - fat from wrist up to shoulder. Can't wear a lot of my clothes. Just really does a lot to destroy my self esteem. I have gone to lymphedema specialists (too expensive - I have to pay $40.00 each time and also travel 40 miles to get there). I have wrapped, manual massage, gauntlet and sleeve all of the time, night time garment and compression pump 2 hours every day. Nothing helps. I've got this huge arm and I hate it more than having no breasts. At least I can hide that fact but the arm is there for all to see. And no I can't cover it up with sleeves because my arm is too fat to wear long sleeves. For some people I guess there is just no relief. Thanks all for listening. But if you haven't guessed by now - I HATE LYMPHEDEMA!
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Hopeful, I hear you on this, and I'm so sorry for your struggles. You're in good company here, and I know others will soon be along to reply as well.
In the meantime, here's one small suggestion a fellow "swell sister" came up with for hiding the "evidence" on those special dress-up occasions:
http://www.stepup-speakout.org/How_You_Can_Cope_wi...
Gentle hugs,
Binney0 -
Hi All,
My first time on this forum. I looked in this morning because I am so tired of having this pain in my arm. Right now I don't know if it's the LE or the exemestane, or a combo of both. It's hard to say that I'm glad to see I'm not the only with these issues - but I can tell you all know what I mean. I'm sick of whining and I'm sick of taking pain meds. I HATE being a complainer!!!!
Jenny
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If you have a REAL pain issue. You aren't a complainer.. Gentle hugs to you...
Update: One week of rebounding. The only side effect so far is weightloss
Being I am now using doing this, I have to be even more diligent, but I haven't noticed any extra swell from it. When I walk or other exercise, my arms and torso would swell. 0 -
Welcome nicu7jenny!
GmaFoley is right -- you're not a complainer! Don't be so hard on yourself.
We look forward to hearing more from you -- you've found the BEST place for support, among these incredible members.
--The Mods
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Jenny.....The Hot Weather just makes it worse....we all go through that......it also makes it hard to be compliant with the sleeve...but that does relieve the pain for a lot of us....Liz
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Oh, no. I didn't realize radiation can make LE worse.
Should I wear my sleeve during radiation? Will that help it not get any worse? I have a very mild case right now after a lumpectomy and 2 nodes removed. It is HEAVY after in the heat, when I'm active/busy and after chemo treatments --only 2 more to go. I don't really get swelling because I manage it by elevation and wearing my sleeve. I'll have 7 weeks of full breast radiation. I didn't realize rads could make it worse.... (I'm one of the ones where the surgeon doesn't think I have it since it was ONLY 2 lymph nodes, and the LE specialist in my area is a guy with less than 3 months experience...) Any advice would be greatly appreciated!
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Sloan, I only had ONE removed and a shoulder surgery on the other side - they must have nicked a node during that surgery. After starting treatment on the right side my left arm swelled. That is when they found that I was compromised on both sides. GrRRRR.
I went through radiation before I started to swell. But more important is to keep the rad burn in check and elevate arms. I'm not sure if you should wear the sleeves during treatment???? I know when you cut yourself or get bit by a bug, you aren't suppose to wear sleeves until its healed. Hopefully, someone else will chime in.
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Sloan15,
I'd suggest wearing a sleeve, elevating your arm lots, and doing something that triggers deep breathing. I jumped on a rebounder (exercise trampoline) and that helped move lymph fluid out of my trunk. Couldn't wear a bra, so held my breast with my hand to keep it from bouncing and hurting.
I've never had much trouble with LE in my arm, mostly truncal and under the armpit. So for me, the deep breathing and elevation was most important. Didn't have a sleeve when I went through rads.
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I have breast lymphadema with swelling and pain. My arm has not swelled but does feel tingly and now I think after using weight machines at the gym (light 10 - 15 lbs) my entire arm hurts and feels like the web cording I had after surgery is back but more pain and less palatable cord. I can't straighten it fully and it just hurts, from top to wrist. I am massaging it but doesn't seem to help. (I had PT for original coding and then a month of PT for the breast. Does anyone have any suggestions that might help?
Sloan15, rads nukes the nodes so yes it can definitely become worse. I hope you don't suffer more complications.
I get sick of complaining too and surely no one likes to hear it or can even comprehend the daily pain but damn we have earned some sympathy haven't we? As we all know, one BC sufferers can truly understand.....
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This sucks and then it sucks more...........
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bc2015 - It hurts just reading your post about the pain! I hope you get some relief.
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Are u elevating it on a pillow above your heart?
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bc2015 - I'd definitely go back to your LE/PT. The damage from the rads keeps expanding forever & I had to get specific exercises & be stretched out over 6 months. Couldn't straighten my arm either & it hurt all the time. I was told to start w/only 2 lb weights & work up to 5 lbs. I have truncal/breast LE and was fitted for a compression bra/vest and also for sleeves & gauntlets. I was told to wear vest AND sleeves when I exercise (and other times like flying & in the pool for water aerobics) - for the rest of my life. LE can spread from chest to arm and you sure don't want that to happen.
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Hi all - thanks for the responses. This does suck! I think the weights definitely brought this on. But I want to maintain some muscle in my arms. Honestly, I am not sure what I am paying a 100/ month for at my gym. I can barely do anything there for fear of "swell". I also think weights cause the swelling to the breast to be worse but I could be imaging that.... Who knows. I flew four flights in Sept and had bad pain for days after each flight. I did wear sleeve and gauntlet and tight sports bra and wear sleeve/gauntlet to exercise. I also wear a swell pad to bed. I guess I will stretch, wrap, pad, elevate and massage.... I hope for relief for all
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bc2015, have you seen these?
http://www.stepup-speakout.org/Handout%20doc%20for...
http://www.stepup-speakout.org/Trainer%20doc%20for...
These are links to documents that may help you decide how to approach your weightlifting with LE in mind. The stepup-speakout website is full of helpful information about managing LE, so do spend some time there in addition to checking out the two exercise documents.
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hi Carol -
No I had not read those previously. Thank you for suggesting them. I will re-think my exercise regime and start over slowwwwwwly. So hard for me to do, mentally. But obviously better for me physically.
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BC2015, keep in mind that the PAL guidelines were developed through a trial that included many women whose fitness starting points were all over the board. I don't think there's any universal magic to the actual starting weights; the key is to back off to well under your own recent lifting ability, and then build gradually and slowly--but even 'gradually and slowly' would differ between women, in my view. LE is an inflammatory disease, and when we over-work or over-repeat with our muscles, we induce inflammation that exacerbates the LE. I heard Dr. Schmitz speak once about DOMS - delayed-onset muscle soreness, which is a manifestation of inflammation. She made the point that the slow/gradual approach to weight lifting is designed to keep us under the threshold of effort that produces DOMS. You may be able to add weight or rep increments faster than others, without triggering DOMS, because your muscles are already accustomed to a certain amount of weight or resistance. Be conservative, yes, and don't add weight + reps at the same time; consider adding reps to advance your goals, in preference to adding weight, meaning move up the reps before moving up the weight. Perhaps add a third set or half-set as a half-step toward the next size dumbbell. Look into Power Blocks, which allow you to work up to pretty hefty weights, yet add them in smaller increments than you'll usually get with dumbbells. Don't be afraid to experiment, judiciously. I suspect that keeping a lifting notebook would help track what works and what doesn't (but I don't have the patience to keep one, myself! --And probably I should.).
Just looked at your surgery history, and wonder too if wearing a good compression shirt would help keep the lymph moving along. The sports bra compresses the breasts, but its band may be inhibiting lymph movement, and straps can do that too, if too tight and narrow.
You WILL get back to your former lifting, and beyond!
Carol
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BC2015, one more thought. Here's a link to a document with lots of exercise resources. The one I think you'll find most interesting is to a video of Dr. Kathryn Schmitz talking about exercise. It's really interesting. You'll find that link under the list of free videos. Here's the document: https://www.dropbox.com/s/7ofal0d7sqa82qk/Exercise...
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Hello. I hope everyone is having a restful day. I need some again. I was doing a few chores without my compression sleeve on and my forearm started to ache. I put my sleeve on, brushed it, and then elevated it. Then I thought, maybe I shouldn't have the sleeve on in case it swells; maybe the lymph can't circulate with compression! So, I took it off and elevated my arm. It's better now, but what is the procedure? Ihave never any swelling - I measure all the time- so I'm not sure if this is my LE or nerves reconnecting after Lx and SLNB. I thought it was the LE because activity brought it on and resting makes it feel better. But, aside from wearing my sleeve BEFORE i start chores, how do i deal with these episodes (or what do i do if i get a flare up?) I really need advice. The local LE specialist n my town is not very good as he just asks me what I think... For those of you who have a helpful doc or specialist, what is the procedure? Thank you so much!
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