GRRRRRRRRR I HATE LE..........
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Gma. funny about that breathing thing~~I just had sinus surgery for polyps that were so bad that I could not breath at all through my nose when I lay down to sleep. I became a real...mouth breather~~surgery and now..breathing again! more or less normal
I do find that yoga requires you to do deep breathing and it does seem to help all sorts of things improve
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VIRUS CAUSING LE ??
Ho Folks,No good place to out this so here was just as good as any I thought! :>)
I have a friend , 10 yrs out who just got LE. Her dr. told her it must have bene caused by a virus! Ever hear of this ? I'm sorry, but my first thought is that he's been doing BPs etc ... on ' that arm' for yrs. now and suddenly he concludes a virus caused it ?
Has anyopne ever heard of this from any reliable source ?
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sounds like a convenient excuse or maybe plan uninformed, she needs a dif doc
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Thats what I thought...convenient excuse. UGH. IF uniformed, I think he would have just said : 'Who knows ?" or possibly looked it up! This is her B.C. ONC!
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ugh again, docs are a pain in the whatever
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I was thinking Advair not Singulair - thanks for pointing that out.
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I refer to Advair as my anti whezze medication! if I skip it, I start to whezze~~~
and I know I should be better at using it but times...I get crazy about all the dang stuff0 -
Purple, NO! I have always read everywhere that LE can happen at any time, even many years later, if you have had any amount of lymph nodes removed and that is why---you've had lymph nodes removed. You should avoid BPs, etc., on effected limb even before you have LE. So sorry about your friend.
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Crazy - Some docs know nothing but I sure taught my surgeon.. the hard way. I let them do bp on my arm during last seroma surgery because he disagreed with me.. I went and saw him that week and he looks at that arm and says, "Hmm its a little "puffy"" I handed him a printout from step up speak out. He never argued with me again.
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grrrr. I was minding my own bees wax waiting in line when a man asked me if I burned my hand. Stunned because I was in my own little world at the time. I said no as I looked at him and then turned my back to him. 10 seconds later I looked back at him,who do you know that has Lymphedema. He said, One of my old clients as he held his brief bag near to his side. Oh, I said, Don't forget to tell everyone that Lymphedema is BCs dirty little secret. I smiled as he walked away.
I have no idea why I said this. Perhaps he caught me off guard anyway he ruined my shoping trip, nosey man.
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When wearing my garments, I've been ask fairly often how I got burned. Compression is used to try to minimize burn scaring.
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Purple, NO! I have always read everywhere that LE can happen at any time, even many years later,...
Oh yes, I know Jeannie! In fact, I tried to give this lady and another friend my risk factors RE: Le, but neither wanted it. One said : "Id rather put all that behind me," and the other said : " I didnt get LE- you need to let that go". Whatever. I tried.
I do feel very badly for her, but I believe her dr. knows it was not from a virus.
hugz
Yes, that was nothing but a nosey person who had nothing better to do. Don't let a jerk ruin your day! Next time just say :" Yes, I was burned in a fire trying to rescue someone, and I don;t like to talk about it ................. especially to strangers !"
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I just ordered new Lymphedivas sets today. I'm already anticipating the myriad questions all summer. Sigh. It's nice to kind of hide in winter but long sleeves are less comfortable. No hiding in summer but freedom from long-sleeves. And it's hotter. Just saying what you already know.
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Purple, Brilliant said, and it made me chuckle.
Somedays we want to explain LE ,other days we would not. Depends on our mood levels and stress levels for the day. Plus every time someone brings it up, it just pulls out the nasty cancer beast thoughts that we want to forget about. We got a life and it doesn't have to always involve cancer treatments, post surgeries, side effects and all that garbolla! Phooey I say.0 -
I saw and chatted with a gal the other day with obvious LE in her hand............she's a Dr. and yet was not even holding her purse and heavy purchases in her other hand. I suggested she read SUSO. I felt so badly.................ignorance or ignoring is NOT bliss.
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Jeannine
I LOVE the Divas. A lot of ppl actually think they are fashion statements ! (you could go with that :>)
HUGZ ............'Plus every time someone brings it up, it just pulls out the nasty cancer beast thoughts...'
True ! People are ignorant ( as Marple said)
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Husband has LE ?
Hi all
Happy Mother's Day to all who ' mother' anybody ( most of us ladies have :>)
Went to ER w/ DH last night to have his leg looked at ... has had pain for 11 mos now ( has PT appt WED) and x ray revealed it to be issues in his back! Wasnt bad for first 7 mos so OF COURSE, he ignored it . Was initially tingling and numb etc ... more than pain. The the hip began to ache etc etc ....
Walks with limp now... right legLeg swelled from FRI- SAT. Could not get shoe on. Went to ER concerned about clot.
Tests revealed no clot. Not s.o.b or chest pain..... Dr saw cancer hx... 24 nodes out and lots of rads @ 5 yrs out and concluded LE. I'm not so sure.
( I was considering RSD aka Reflex Sympathetic Dystrophy Syndrome myself.) I dunno'.
In any case, this man will NEVER comply with a " LE lifestyle". After his colon surgery they gave him a special diet.
He eats ANYTHING he wants ----TOTALLY disregarded it. The kicker is that it doesnt seem to matter. He digests just fine ! ( Biut Lord knows what that chol. level is !)
Not sure what to do ... no convincing him about compliance or seeing LE therapist. The ones convered by ins. here are terrible, and I am not working now $o .. ugh ( grrr???) Still feeling highly symptomatic from rash reaction. ICE COLD FEET, dizzy etc etc .. but hoping it will subside soon.Who knows anymore ?! :>)
PS Dr kept trying to explain LE to me as I TOLD HIM I had it ! DOH! Don;t think he believed me at all. Told my husnband to " run to the drugstore tomorrow and buy some of those stockings" ...verbatim)
DH , who had no intention of gettting any stocking ever asked, : " Should I wrap (Ace ?) the leg overnight ? If I had had a cast iron fry pan with me, I would have klunked him!0 -
Oh darn Purple!!! It seems sometimes things just start piling up. Once again a Dr. proves they often know so little about LE. I'm sorry about DH's dx but if he's not willing to comply, unfortunately there is no magic pill to make him listen to you. Does he still see an onc? Maybe that's the route to go.
(((Purple)))
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THX Marple!
Yes, the onc gave the order for xrays for his back/hip when the hip and leg pain worsened. I had him sleep with the leg elevated on a pillow last night and the swelling is reduced by 50% this morning . THAT does not sound like ' typical LE" ( oxymoron) to me (?)I have a feeling it will be right back 'up' again after work/standing all day.
Does that quick/significant of a reduction sound typical ??????????Anyone ?
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Purple, I have been amazed at how my entire leg swells after activity, and it all relates to arthritis in the knee. And the swelling will reduce temporarily after a night of elevation. So maybe don't underestimate the power of an injury/aging (I hate typing that word) to create swelling. Has he seen an orthopedist in his diagnostic efforts? I hope you get some resolution. I'm sure you both could use some good answers and a return to a less frustrating and painful daily life!
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Purple, I hope your husband's leg is better soon. That sounds miserable.
I am back to really being frustrated with LE. I have done pretty well, but Saturday we went to a (really fun) wedding, and it was hot and humid and I danced and danced, and wasn't wrapped (thinking surely I would be fine for a few hours, and having no interest at all in being so conspicuous). I am paying for it now, aching and swelling. My hand is visibly swollen, the worst it's been so far, and wouldn't you know, our air conditioning went out Saturday, so there's that. I did wrap yesterday, and I think it helped. And just to complain about one more thing, I have found OT really helpful, but have a stomach virus or something today, so I'm not going to go (plus I bet it's cool in there! lol).
This is a good reminder for me that it doesn't take long for it to get worse if I'm not on top of things.
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sorry aunt paula
Do you wear a glove at all ?
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I don't yet, but am supposed to be fitted for sleeves and a glove probably next week--ironically, the OT has helped so much that my swelling has gone down really well. I think I kind of got lax, thinking "oh, I've got this now." Lesson learned!
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THX, Carol.
I am thinking more along ' your lines' of thought. Dr. saw hx of cancer and LE jumped out (Hey, at least we are getting recognized !) In either case, I dont think the elevation will hurt. The good ortho DRS around here are very hard to get into - 6 mos out in the only good ortho place / N.E.O.S and not only that, you have to already be a pt to be seen ...no new ! ( I have been there many times :>(
There are others , but quite well known for being sub-par .. I am calling a new PCP for him later today- afraid that may take a long time as well. The moral here is not to let things go SO darn long in the first place . DOH- he's not reading this !
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Aunt Paula - I do that about once a month - at least - then say Lesson learned - and then do it again. I think we all need to have a day to just say forget it, but we have to pick a restful day not a strenuous one to be "noncompliant"
. My OT/LE T always says, "Life happens, don't beat yourself up over it. Start again..." Sometimes I feel so stupid.. I know better but have those days I say I just don't want to where my sleeves and gauntlets or my compression cami. When I start work in the morning on the computer, sometimes I don't put them on, but within an hour my arms and hands ache. Then I put them on. I can't believe I've been doing this for 2.5 years already. Summer is the hardest for me - I find a cool moment to put them on when I'm not all sweaty, then keep them on all day. Ladies that know my nerve pain issue. - After 3 acupuncture treatments and sniffing peppermint essential oil, I have been able to short circuit the pain receptors and ease the pain. Friday I had 8 hours of NO PAIN. Problem is, I felt so good, I decided to plant a few herbs and beans in the garden. Within a half hour of doing that I had a severe pain attack, BUT I got my peppermint oil out, thought of a happy place and managed to bring the pain level down to tolerable without extra pain meds. Just thought you all would like to know.
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Gma, I so related to the peppermint oil helping you! Have used it and really love when something non medical helps!
gee, planning on planting today but heres hoping you have a painless day
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Within a half hour of doing that I had a severe pain attack,
tsk tsk - too much too soon ?
Ehat the hey does peppermint oil do ?
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It short circuits the pain receptors. If you go to the patient section of this site, it will explain what pain does to the brain and then the 4th lesson explains the peppermint and other things to help kill pain receptors in the brain. Like everything, you need to find someone that knows what they are doing to help you. But this site my acupuncturist gave me, really opened my eyes.
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the spa I go to uses essential oils and has offered it to me in the past, you can get a diffuser thing as well
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Make sure the essential oils are pure - Some of them are synthetic.
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