GRRRRRRRRR I HATE LE..........
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purple32,i cant believe that something as not pretty as lymphedema is represented with a butterfly! Was it a creme, i guess it was,huh if it was for cold hands and feet. the theory of how it works is that it IS a vasodilator,and that the vessels dialating and constricting would also encourage lymphatic flow. but i will bow to binney4 as she does seem to be powerfully knowledgeable about this f**K*dness of a condition. Sorry. can you tell it is really bothering me today?
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Kathec, we NEED a butterfly if we have to deal with this!
It's about the only bright spot in the whole LE picture.
Here's a brief run-down of all we've been able to discover about how LE ever got matched up wih something as wholesome and hopeful as a butterfly:
http://www.stepup-speakout.org/History_of_Lymphedema.htmPlease never say "Sorry" about the way you're coping--sounds about right to me. Chocolate helps.
Gentle hugs,
Binney0 -
Leah, hang in there. Hope you are now recuperating at home. Chag sameach!
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kathec
Actually, B Broom is a vasoconstrictor. I know because I did LOTS of research on it. I have neurocardiogenic syncope----very very low BP with associated symtoms. Check this out :
http://www.dinet.org/what_helps.htmWhen I was officially DX by TTT ( tilt table test) they gave me nitrogylcerine , which is a vasodilator which knocked me out COLD. (No wonder they give those tests in a hospital!)
In any case ' the broom' is also a diuretic... bad for LE and bad for low BP too.
I dont know what Binney posted, but I do know you can bank on it !
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Yikkes, I am back with my LE!
Went to get my arm measured today and have good arm measurements but my ALND side trunk is puffy, I am being ordered some padding to stuff into a sports bra to wear for a month to see if that helps.
Has anyone else had this issue?
Did wearing the sports bra help?
Thanks,
Ali0 -
I had a chest pad made by JoviPak, that I wore/wear under a sports bra when my truncal LE is acting up, it works great!!!
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Me too have a jovipak pad I wear in my compression mastectomy bra. Works wonders.
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Thank you for the replies :0)
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Hawthorn berries?
Hi all
Not sure where to post this, but since the subject of B Broom came up, I started (RE) researching herbs for my NCS and low BP condition. Seems hawthorn berry is a real winner for me. Just wondering before I explore aNY FURTHER...DOES ANYONE HERE KNOW OF ANY REASON WHY IT MIGHT NOT DO WELL WITH le ?
thx!ooops....sorry caps
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Questions for all you LE veterans, but first a little history in addition to that stated below. I had ALND surgery on 4/25/13, only level 1 nodes taken. I had the drain removed 12 days later even though I was still producing 30-40ml/24 hours because the tube was blocked and leaking. 3 days later (last Friday) I had an egg sized seroma on the breast side of my armpit and went to see the BS's PA who drained it. The egg was back within 48 hours. PA said they don't like to stick and drain them more than once a week because of the risk of infection and LE. I also still have quite a bit of swelling on the posterior side of my armpit. I don't seem to have any arm swelling though. So my questions are: Is this considered LE? Do I go and get the seroma drained again? There seems to be so much contradictory information out there. I have and appt with a certified LANA LE therapist, but it is not until the 29th. Thanks for your help.
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CELLULITIS ?
Does this look like it ?
This redness is very prominent and has been here over a week. I thought it was sunburn, but no fading. Someone saw me today and asked :" Whats with the sunburn ? It got darker! !" I THINK I had it before the 1st time I went into the pool. Otherwise, I would blame the chlorine because my skin keeps getting red areas ( NEVER this large and usually gone in less than a day ) since my LE.... skin seems more sensitive. Usually, I put Eucerin calming cream on and all fades. This ' "sunburn' does seem to experience a tad relief from the cream but then comes right back red!I feel fine. Feels a little itchy, but I will NOT touch it ( pinky promise :>) Should I take my keflex ? I have NO other symptoms . I REALLY dont want to go to the hospital here !!!!!
PLS ADVISE!THANKS!!!!
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CELLULITIS ?
Does this look like it ?
This redness is very prominent and has been here over a week. I thought it was sunburn, but no fading. Someone saw me today and asked :" Whats with the sunburn ? It got darker! !" I THINK I had it before the 1st time I went into the pool. Otherwise, I would blame the chlorine because my skin keeps getting red areas ( NEVER this large and usually gone in less than a day ) since my LE.... skin seems more sensitive. Usually, I put Eucerin calmig cream on and all fades. This ' "sunburn' does seem to experience a tad relief from the cream but then comes right back red!I feel fine. Feels a little itchy, but I will NOT touch it ( pinky promise :>) Should I take my keflex ? I have NO other symptoms . I REALLY dont want to go to the hospital here !!!!!
PLS ADVISE!THANKS!!!!
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Purple............I don't want to step outside of my comfort zone to give advice BUT I'd be taking Keflex right away and calling my GP (Primary Care physician I think you call them) for an appt. tomorrow.
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Bren, I hope someone comes in to help you with your problem. I'm so sorry I'm not of much use to you other than to bump up the thread.
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Purple, cellulitis can "percolate" before taking off, so I'd jump on this right away. But get to a doctor too, because if it's not cellulitis you need to figure out what it is (and if it IS cellulitis you need medical supervision).
LE is an inflammatory condition, and especially on the chest/breast that can take the form of redness that does not respond to antibiotics. I personally have never heard of it being that widespread, but it's another consideration. It's very hard to get rid of, and the treatment is careful MLD to reduce any fluid build-up. But in case you've got cellulitis going here, don't do MLD yourself for now. Find out first.
Keep us posted!
Binney0 -
But get to a doctor too, because if it's not cellulitis you need to figure out what it is (and if it IS cellulitis you need medical supervision).
Grrrrrrr!
Le ITSELF?!
Doctor ?!!!! ! I cant imagine a dr. will know ANYTHING AT ALL about this .Thanks very much . I appreciate your prompt reply. ugh
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Bren, hello! Sorry your post kinda got lost up there!
Seromas seem to be implicated in a higher LE risk, but they sure don't guarantee LE. Hopefully this will be limited to a stupid seroma and not move on to LE, ever.
Should it be drained again? Probably, but you'll need to wait the week if that's what your doctor recommends. You definitely want to avoid infection, because it also heightens LE risk (but also doesn't guarantee it
). But that goes both ways, because having LE (even before it's diagnosed) creates a heightened risk of infection, too
. All of which is probably what the advice is so confusing on this issue.It's great that you'll be seeing a LE therapist soon, and hopefully she/he will be able to advise you on the seroma as well. Most of us have trouble scheduling prompt LE treatment because there are too few therapists, but two weeks shouldn't produce a problem for you. In the meantime, be watchful for any sign of infection (cellulitis) and act really fast if you suspect it. Here's information on cellulitis:
http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htmDo let us know what you discover!
Gentle hugs,
Binney0 -
Linda KR great idea! Is there any way you could post a pic.
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Cookie - here's a link to their page, I have the unilateral MX one - when my truncal acts up, I wear it for a few nights and poof, it's gone - http://www.jovipak.com/breast.html
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Purple - please let us know what you find out!
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UPDATE
Worse overnight...swelling there a bit. I DID do MLD....thought it was on the EX. forum to do a lighter version MLD. I dunno/ was confused. Will call DR soon/ early here.Hot to touch.
swell
skin looks/feelsleathery
worse.
ugh.
Should I wear sleeve ? Glove ? Need info for DRs. They will NOT know...dont trust them AT ALL
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Oh darnit purple. I just signed on hoping for an improvement update. Go to SUSO and print out what Drs. should know to take it with you. I'm not sure about wearing the sleeve and glove. If I was to guess I'd say no for now but I really don't know. Healing hugs to you. Have you started the antibiotic?
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P.S. If you can't get in to see your Dr. soon you need to go to emergency.
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Thanks, Marple. I have just the glove on for now. (I'm convinced they wont know so if anyone does, pls speak up!) Dr said to come see him at 9:30 and HOLD OFF on keflex until I see him.
I did print all that info out. Thank you, ladies. I must say - I am in a bit of a panic. Of course I"m obsessed with getting to the bottom of it too. I am really thinking the pool did this somehow which would be ' extra' disappointing because I love it so much. Ws my first little connection with other ladies who had cancer . The arm felt good afterward too. I began there <pool> May 7th...had a bit of a *slight* sunburn in this area about 3 days earlier/ maybe MAY 4th. I dunno'.And have I said :
"GRRRRRRR! I HATE lymphedema ?" I was soooo compliant - at least in my mind...MLD, sleeve when I was supposed to, glove at all times, tai chi, rebounder, swimming, walking, and I lost 30 lbs...My LEist is out of town teaching MLD (ggggrrrr)
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I'm so sorry you've run in to this problem purple. It IS scary. Just when we think we know what to watch for, darn LE throws another curve. Sending hugs and (since Binney likely isn't up yet to send some) chocolate.
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Purple, how incredibly frustrating! Being compliant is the best any of us can do, but there must be thousands of ways for stray bacteria go worm their way in and cause trouble. Let's hope the doctor comes up with a simple diagnosis that's something on the skin and not cellulitis that would require any herculean effort to fix.
Looking forward to your update after you see the doctor. And holding a good thought for you in the meantime!
Carol
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And don't forget to use Binney's 'cellulitis can percolate' expression if your Dr. is a bit balky
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And holding a good thought for you in the meantime!
Thanks again, Ladies. I really appreciate it. I am SOOOOO hopong he says this is soem sort of a pool issue ( Though I am not sure I will believe him :>(
I have lost faith in all drs.Of course it all began when my mom died at 49. Nothing new. Shame we need them though.I will update all of you . I am hoping to get some good info that may help any of you avoid this scare in the future because I sure do feel like I have been living my life around being cmpliant with LE! My poor part time aide feels like she is working full time ( covered for me for meetings TUES and a conference yesterday and now this ) So, there is guilt on top of all of it. I am ridiculously responsible .
we'll see.
Many thanks. I'll skip the chocolate though ( Otherwise, I wont feel I am being compliant
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Purple, just waking up here. Hoping you're now at the doctor and getting solid answers--easy ones, preferably!
Be WELL!
Binney
P.S.-NEVER pass up a chocolate opportunity!0 -
Praying for you purple. Never pass up chocolate!
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