GRRRRRRRRR I HATE LE..........
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Binney - I've had to become a back sleep as well. I tried creating an obstacle course around my body but I still manage to roll over and end up on my side. I know what I have to do - but I'm getting pretty resentful of all the stuff I have to do/buy just to function normally. ( Ooops, forgot there is no normal). What I need to do is get bigger/higher pillows and basically build myself a manger so that I stay in position.
But on a happier note - I went to a water spa yesterday! It's my first time immersing myself in water due to my restrictions from DIEP, six months ago. I wanted to avoid drastic temperature changes so I avoided the plunge pool and sauna, but indulged in the salt pool, epsom bath, and sauna. The old muppet hand puffed up and I spent the day with sausage fingers, but I did a bunch of exercises and everything is pretty much back to normal today. Well, not normal. But okay.0 -
My dream is to own a salt water pool or at least have a public one.
If you immersed into anything hot that could cause swell to. I hope you are back down in the swell department. I do dip into the hot tub but only up to my hips or a quick plunge just to get the chill off, I never sit in it. I have a infared sauna at home but never have put even my foot into it.
I to have issues sleeping on my back. I try pillows but my body allows seems to end up on my LE side.
I wonder if I switched sides of the bed if it would change things. I might try.
There is not much room for DH with all these pillows.
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Not much room in bed for my DH either. (Though the dog always finds a spot). With all the surgery and side effects, our guest room is getting a pretty good work-out. We're both lousy sleepers these days so we both end up in the kitchen at 3 in the morning. It's a bit of a slumber party around here.0 -
Lymphedema is a pain in the ass. There is no other way to describe it. I thought cold weather would be better, cooler more comfortable.... WRONG. Getting dressed requires maneuvering long sleeves over compression sleeves.... nothing is smooth, things get caught. IT IS A GIANT PAIN IN THE ASS. This does not include Flexituouch,. MLD and washing sleeves. Whenever someone says "Oh, do you have carpal tunnel/", I reply... "no this is lymphedema a complication of breast cancer"..... let them look uncomfortable for asking.
I am polite in my manner but I am over not saying what is really going on......
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I get panic attacks if I try to put a long sleeve over them0 -
I haven't posted here for a while. My left breast LE was doing well with the exercises and compression bra. Sunday I fell and fractured my left shoulder. I'm in an immobilizer so I can't move that arm at all. The dr said I'll get swelling even if i didn't have 32 lymph nodes removed. Such a stupid accident!!!!!!!!0 -
oh fgm...I am so sorry...why is always the LE arm? Please rest and feel better soon
Mags0 -
fgm, I am so sorry to hear about your accident. I'm wondering if someone can wrap your arm? I don't know what kind of arm immobilizer they have you in, but with some the fit can be adjusted to accommodate the wraps, and that would sure help control the swelling. Just a thought, as that kind of swelling would certainly benefit from a LE wrap.
Please keep us informed on how you're doing. Chocolate is definitely in order!
Big, careful hugs,
Binney0 -
fmg. Dang, not your LE arm. Seeing that you broke it at the shoulder level is will be hard to have you move it even a bit. Can you take the weight off with pillows, that is what we did with ma's shoulder. Also watch for yeast infection under the arm because no air will be able to get in there if it is flat against your body. We had nurses wash the area with a washcloth wrapped around their index finger and they gently poked in there to keep it clean and in did the same to dry it. The yeast or other nasty infections can build up quite quickly so be aware and have someone keep an eye on it.
This sounds wacky but when I walked on ice the other day I kept telling my self if I fell to pick the non LE side to land on. I am not sure this will work in the future but I am trying to brainwash myself into picking that side to fall on. It worked once before. Ugh…and GRRRRRRR..Stupid LE.
Sending you virtual chocolate ginger fudge I made last night. Oh…. haven't baked in a while and I noticed that stiring the fudge was quite a job with my LE arm. It got tired. So girls be careful whilst making your goodies.0 -
I made homemade fudge brownies tonight. Seemed appropriate with all the snow we are getting. Plus needed to test out the new convection oven. A special big piece for your fmg…
Im a side sleeper. There is no way I could sleep on my back. I always wake up with my LE arm twisted and tucked underneath me.0 -
Today is my one year anniversary of my LNT-lymph node transfer surgery that Dr. Kline, Charleston, SC did during my Stage 2 natural breast reconstruction surgery.
I'm so happy to report that lymphdema in my arm has not occured since! Fingers crossed this is good for life. I will still wear my sleeve to fly or drive long distance. I have a hardly used LymphoPress machine paid for by insurance ($7,000?) that I plan to donate to someone in need. My PT-CLT said I should hang on to it for a few years so will do that.
Wishing the very best outcomes possible for all other LE patients!
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Thanks for the chocolate everyone and suggestions. I think I'll call my LE PT on
monday. Be careful on the snow and ice!!!!0 -
That is an awful injury for anyone.... for you, particularly bad. I am so sorry. This problem is relentless............
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I went back to the orthopedic surgeon this pm and he doesn't think I'll need surgery.
I have to go back on monday for another X-ray.
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That's good news...hope it sticks after the next X-ray!
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Thanks Carol. Me too!0
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been creeping on this thread but havent posted - have a ? & u ladies seem to be a wealth of info! Diagnosed with LE in july and minimal swelling in fingers & forearm. Did therapy 10 wks for massage - have standard sleeve but usually get by with the glove. It's been really good. This past wknd we had company did a bit of cooking fri & sat so i expected issues sun - today i found myself @ ON (had PS appt & they r in sam building) because the swelling is getting worse & painful. ON wants me to c physiatrist (dr of physical therapy) w/ LE specialty. ON is in his late 60's love him. PS in his late 30's wants me to c dr chen for microsurgery. I'm just overwhelmed. Old school or new? Nothing im doing is bringing it down!!!!!
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mjsgumbas- if it was me I would see the dr of pt with LE specialty and see what he/she has to say. r u wearing your sleeve and glove now? R u doing your exercises and self massages ? Good luck to you.
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fgm - yes I've been religiously doing massage and exercises and had it elevated for extended periods of time, Sun Mon & Tues and it isn't letting go. Still today - the pain has gone up thru my fingers. This has never happend before. It has always been very managable.
ON thinks I may have some scar tissue from the last procedure I had, which may be causing a block... I don't know who to believe... just want the swelling to come down so I can use my hand!
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misgumbas - I'm off to see a physiatrist as well for my swollen hand and fingers. It's not too bad - but there have been moments where I looked like a muppet. I'm still trying to figure out what causes the swelling, and the magic combination of stuff that will keep it down. I tried wearing just a sleeve but it made my hand puffer - then sleeve and glove - then just a glove. Keeping it elevated is pretty effective, and I try to prop it when I sleep but I end up just rolling over onto my side and lying on my arm. So frustrating. Can't tell if the exercises are working or not, but the one thing for sure is that I should not have spent an evening carrying a tray of oyster shooters at my friend's Christmas party! Though it's a really great way to meet men.
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Misgumbas- how r u doing?
I went back to the surgeon. He took another X-ray. Good news! My shoulder has healed. He was amazed. I get to take my immobilizer off in a week and begin exercising it. Great present!!!!
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fgm - Thanks for checking - it took almost 6 days for the swelling on the top of my hand and fingers to finally come down. Haven't made a decision or appointment yet with either option, but did speak to Dr. Chen's nurse (Univeristy of Iowa) and got a ton of info on LVA surgery. Waiting for after the holidays to make a decision. I need to learn to take it easy... so I don't have these crazy flare ups - but that'll never happen!
Great news about your shoulder!!! A great present indeed!!!
Hope you all have a great holiday season!!!!
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I'm still waiting on my sleeve and glove through my insurance but today I went to a certified specialist in measuring/sizing individuals with lymphedema. I bought a Juzo sleeve and she suggested an Isotoner glove instead of the gauntlet for $ reasons and also my fingers have swelling. I've had both on for a couple hours now. I just took off the sleeve to use the bathroom and my hand is getting more swollen. WTH? How can that be? What should I do? My next appt. with my therapist (who is lymph certified) is Monday.
Do some of you just wear a glove? Do some of you just wear a sleeve?
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mcgis, does your hand do better without the garments? If so, for goodness sake don't wear them until you can talk to the therapist on Monday. We're all different, so I'm sure every sort of combination has been tried, but you really don't want to wear a sleeve without a glove. Here's why:
http://www.lymphedivas.com/handprotection.asp
While you're waiting to see the therapis, elevate your arm as much as possible (on the back of the couch while reading or watching TV, on pillows at night), stay REALLY WELL hydrated (harder to do when the weather is cooler, but still every bit as important for keeping the lymph fluid moving), and do some deep abdominal breathing at intervals throughout the day. Also throughout the day raise your arm and open and close your fist a few times, slowly.
And, mcgis, do please have a very merry Christmas! Be well,
Binney0 -
Thanks, Binney. I'm not wearing the sleeve at all. I'm trying out the isotoner on its own. When I took it off last night before bed my fingers looked really good and hand had gone down from when it got bigger with the sleeve and glove on.
Merriest of Christmases to you too!!
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Hey could you all remind me if I remember this correctly... If I am in pain it can cause swell to come back?
Doctor is taking me off my nerve pain med. Had to choose dizzy/nausea or pain for a bit. The Dizzy was taking over my world so I opted to taper off the med. Good news is the dizzy has lessened, bad news is all the nerve pain in my breast is back AND it looks like my breast is swollen again. After the fact, I put 2 and 2 together. Any suggestions on what to do?? That part I forgot...
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I took my immobilizer off today and I can type with 2 hands. My breast is slightly swollen so I put my compression bra on....nothing in the hand or arm
.GMA-sorry to hear about your swelling. Do you have a compression bra?
Happy New Year!!!!!
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gmafoley, pain does indeed draw lymph to the area in distress, so you are spot on with your assessment. I sense that nothing short of the nerve pain has helped you with before, so I'm stymied on what to suggest. Deep, deep and slow abdominal breathing might help you send some of that pain to another place, and it would also help to move the lymph. And as fgm suggests, a compression bra if you have one.
Here's hoping for a better 2014 for you, gma, and for everyone else who has had to put up with LE and any other morale-sapping conditions this past year.
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no issues yet for me in the arm, but I'm really having pain in my ribs under the breast and around into my shoulder/ back. seeing an ot but only twice a week( that's how they scheduled) but nut much long term relief. I find that soaking in a room temp bath helps, but also only short term. I have not found any compression garments yet and the ot has not recommended or prescribed any.
Does anyone have any suggestions.
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I am having severe pain in the breast wearing the compression bra, but also have the severe pain without - so opted to where one today. It is loose enough so the lymph can flow but still hurts.. I really hate LE and Pain right now.
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