GRRRRRRRRR I HATE LE..........
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JO-5, I also have a lot of nerve pain in the armpit area and down the side along with pain in my arm depending on different movements. My oncologist does not think it is LE but is not ruling it out yet. He has ordered an ultrasound on the 27th for the armpit to check the nodes and see if there is maybe a pinched nerve somewhere there. I have had 5 surgeries on that side and was burned extensivly from the radiation. I had a diep a year ago and so we will see if it is nerve damage.
Laura (Estepp) I finally got here, lol.
Jill
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((((((((((((((((((((((((((((JILL)))))))))))))))))))))))))))))))))
Sister..... I thought you got lost....:)
SUSY....... THAT WAS FUNNY!.....
Love a gal who throws in a twisted side....... lady after my own heart! We need that " twisted sister" smiley.... YES!0 -
Wasn't sure which LE thread to post this----but wanted to let you all know that
SHARON50 has a birthday tomorrow!!!!!!!!
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Hope you have a Happy Birthday tomorrow Sharron. Today is mine! So much nicer than last years. Hope yours is too.
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Happy birthday kittydog, wishing you the best
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A party!
Happy, happy birthday to Kitty and Sharon -- may this coming year be your best ever!Happy hugs,
Binney0 -
Whoo, Hoo, Ms. Sharon!!!! Happy Day!
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Trisha, in the middle of the night it occurred to me to mention that during a flare there are a couple of things you can do to hurry the healing along. First of all, flares make me crazy so I tend to wrap my arm too tight (get that sucker reduced right now, by golly!
) It doesn't work that way -- makes the swelling worse when you do it too tight.And the other thing is, some European study awhile back showed that wrapping was most effective at reducing swelling during the first 8 hours after it's applied (makes sense: if it reduces the swelling then obviously it no longer fits as well as it did when you put it on). So in the big European lymphedema hospitals they re-wrap every 8 hours around the clock. (Good heavens!
) They also, of course, promote gentle exercise while wrapped (so they have group exercise classes there -- that'd be nice!) I did re-wrap every 8 hours once during a flare, and it worked wonders. But it takes devotion, which you may or may not have at the time. I'm wrapped today (stupid, crazy, rotten flare!
), and I just talked myself into doing it again in 8 hours. So see? Good thing I posted this! <Sigh!> 
Be well!
Binney0 -
Binney, hope your stupid flare settles down: when Polly (LE therapist) did the Robert Lerner clinic in NYC, they wrapped twice a day, and did the group exercise--don't over do it, and remember, low pressure wraps work BETTER than high pressure ones.
Flares cause despair: it's inherent.
Happy Birthday to Sharon and Kitty! Best wishes for health, happiiness and a wonderful celebration!
Kira
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Binney~I don't wrap as my LE is mostly truncal, just a little bit in the upper arm. Is there wrapping for the chest/shoulder/back area? I was in so much pain yesterday and today again. Ugh. If I'm not better Monday I'll get a referral back to my LE therapist again. I'm trying not to as I have reopen with her every flare and it is a pain to get in, but I can't seem to get this one under control on my own.
Also, I do have a sleeve that really helps with the heaviness in my upper arm. I only wear it during the day. But on Thursday night, when I took it off, it had rubbed my skin raw at the inner elbow crease. I was professionally fitted. This is the first time that has happened. But it was also the first time I have been wearing sleeves daily instead just during excercise. It was my 3rd day of wearing them. Any advice??
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I would love some advice too. I have an irration spot at the top where I glue it down with It stays. I am not wearing sleeve today just encase it is not that.
Just want to crawl back in bed and sleep for 10 hours! Feeling much better just didn't sleep last night.
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Trishia, the only wrapping I know of for truncal is that some therapists suggest a super-wide ACE wrap. I tried that early on (before my really good therapist) and found it didn't work for me -- you can't wrap higher than the axilla and my swelling goes a bit higher than that. (Note: NEVER use ACE wraps on your arm!!! Chests are a different animal entirely -- you do have to be able to continue to breathe, after all
).But here's the thing. Most of my truncal problem is on the right (prothylactic) side, and my right arm is mostly a problem in the upper arm. But for me, the two are definitely related. If my sleeve is too tight at the top, my chest flares and hurts. If my chest flares, so does my upper arm (or it gets hard-feeling). If I overwork my arm my chest hurts. If my upper arm flares even a tiny bit it makes my truncal flare. I have no idea why this is. It doesn't even make sense to me. Before my lymph system was compromised both areas drained into the axillary nodes and had nothing to do with each other, now heaven only knows what's going on in there, but whatever it is they're in it together.
So next time you see the therapist, maybe ask her to teach you to wrap your whole arm, because the way to get the pain out of my chest is to clear neck nodes, MLD carefully with emphasis on my upper chest, and WRAP MY ARM. Even if my arm doesn't hurt or look swollen. It takes several tries to learn to wrap well (that was an understatement -- it took me centuries and I cried a lot and tossed bandages around and scared my kids), but it's SO IMPORTANT to know how to do that, because then you don't have to have a therapist in your pocket.
Inner elbows (and the back of your elbow for that matter) really take a beating with these garments (so do the finger webs with gloves). Mine are Gottfried and they have an elbow lining sewn in that goes clear around, front and back. They also stitch the front of the elbow to remove some of the fabric so it doesn't get all wrinkled and gathered up in there as you bend your arm, and that helps a whole lot. But I've also used cornstarch (or unscented baby powder?) before donning the sleeve to ease the rubbing. You can use a square of Artiflex too, but it's a bit of a to-do to get it to stay nice and smooth under the sleeve as you put it on. I'm sure others will be along with ideas for this, because it's a common problem. If your skin is chafed DON'T wear your sleeve again until it heals -- you sure don't need an open scrape there to let bacteria in!
Keep us posted!
Binney
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Kitty, I hope you get a nice, long nap today! Being tired is such a downer.
You're not allergic to adhesive are you? Maybe try the sleeve awhile without the ItStays and see if it's the adhesive or the sleeve that's irritating. As you pull you sleeve on, make sure it's not twisted. I've had trouble with my sleeve when they twist even a little as I put them on -- that puts a sideways pressure on the skin and can be real irritating as you move your arm. Just a thought...
Hugs!
Binney
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KittyDog, a belated happy birthday wish for you. I'm sorry I missed it yesterday. I hope your day had some special joys for you. Gentle birthday hugs from one b'day gal to another.
Thank you for the birthday wishes to a great bunch of gals!
((((Coonie))))
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Hope you both did something chocolate!
Binney
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This should be enough to go all around the thread, have a second slice if you'd like!!!
Hugs a tad late for our Kitty & amazingly on time for Sharon.
Party!!!!!
Party!!!!!
Party!!!!!
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Thanks for the Birthday Wishes.
Binney I am hoping it is not a new allergic reaction. I don't think so since it hurts to touch it. It is a very small spot like the tip of my little finger. My thoughts are that I pinched it maybe trying to pull the sleeve up and over the glue area or that when it came un glued it pulled a thin layer of skin with it. My arm did hurt there late yesterday afternoon. I no I missed getting some of the glue off my arm because my shirt was also glue to it.
While I am being bad, I am going to take a hot bath and hope I can get the tense neck and shoulder muscle to calm down.. I have been cold all day and yep I shrug my shoulders when I am cold and now I feel like it is in a tight knot.
Thanks for the advice.
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I'm having a small bit of irritation tonight from the gauntlet on the web at the base of my thumb. Since the LE is only in my upper arm, would wearing a bandaid to protect it be a good idea or should I just use corn starch or baby powder?
Thanks.
Leah
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Happy Birthday to you, Happy Birthday to you, Happy Birthday dear Kittydog, Happy Birthday to you.
Happy Birthday to you, Happy Birthday to you, Happy Birthday dear Sharon, Happy Birthdya to you.
...and lots of love.
Leah
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Leah, maybe try the corn starch, as the bandaid adhesive could cause problems.
Your skin isn't used to having the compression on it, and some gauntlets have seams in the thumb area.
It gets easier, it does.
Kira
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Thank you SO SO much for your advice. I am new to all of this (even though I've had it for years....another GRRRRRR). I know how much time it takes to type up long responses, and I just want to tell you how much I appreciate it. Seems I have a lot to discuss with my therapist.
On a happy note, I found compression tanks at TJ Maxx for $7.99 and an Under Armor compression top for $12.99. YAY!
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Jo, you are so pretty!!
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Jo - It is always fun to 'see' what others look like. I agree, you're beautiful!
Trishia - I'm so sorry you're having a flare. HATE IT for you! I want you to know what an inspiration you are to me that you're still out there doing body pump and body jam. i'm only able to do some of body flow right now, but someday I hope to be where you are! Thank for being an inspiration to me!
[hugs]
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Alright ladies, I have glove issues. GRRRRRRRRRRRRRRRRR!!!!
I ordered a juzo glove several weeks ago and I've found after wearing them for a few hours, depending on how badly my fingers swell, it HURTS! The webs between my fingers hurt, my thumbs go numb. I ordered it in the smallest size. I didn't know one had to have a PhD to figure how to measure for the d@%* thing. Please help me out here. Are the measurements supposed to be around the base at the top of each finger? Is that how it works?
http://www.lymphedemaproducts.com/cgsizing/glove_chart.html
I understand the measuring of the hand and the wrist ... I'm just not sure what all the x and y stuff means. Maybe I should have paid more attention in Algebra!
I've noticed when I do wear those gloves the swelling is greatly improved. But I find I can only wear them for short durations. I'm worried about what is going to happen this summer. If they swell now & I wear those gloves it hurts ... summertime they only swell worse. Should I order the glove in a bigger size? Or does that defeat the purpose? Also I've thought maybe I should decrease the amount of pressure. I'm not seeing my LE therapist right now because I have no insurance. I'm managing things fairly well with the MLD and sleeves and gloves. She only ever recommended for me the isotoner therapeutic gloves but those are not long enough for my fingers. Any thoughts/recommendations would be helpful.
GRRRRRRRRRRRRRRRRRRRRRRRR!
[edited to add]: The ones I have are the highest compression. Should I go down in the compression? That's what I meant above when I said, "Should I decrease the amount of pressure"
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Dawn-Hope,
Juzo gloves are tough to size as they don't give a range--just an absolute number. Previously, I had fit into a size 1, but recently I got a sample size 1 and it was just too tight. So, I looked at the size chart again, and I ordered a size 2. Now, the ideal would be something in between, but at least the size 2 doesn't hurt.
Pain is not good with gloves, and chafing is not good either.
Personally, I like the medi-95 gloves and I am again between sizes there--could wear either a 2 or 3, and at least they give a size range. But I found the size 2 (luckily the fitter had a sample) was too tight, and the size three fits well and works well.
What's nice about medi-95 gloves is that the fingers are full compression. And, until Juzo recently dropped their prices, they were "relatively" cheap--at around 119$.
No pain is the goal.
Do you have access to a fitter--it doesn't have to be your LE therapist, but fitters will work out of medical supply companies.
Binney uses Hanger, and I did a search of the Chicago area, and they have a lot of locations
http://www.hanger.com/locations/pages/default.aspx
Sometimes, you can try on a sample and then order for less money on-line--but be sure and order from a site that has a liberal return policy: I use brightlifedirect--30 day return policy
http://www.brightlifedirect.com/
They were selling Juzo gloves for 107$ last month--so it's worth being on their email list.
Hope that helps.
Kira
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Okay while we are asking about stuff. I am still unhappy with the size they keep putting me in. I admit I am obese. So here is my question. What size juzo sleeve would you put me in if the top portion of my arm is 17"? That was what I measured back in Sept. I would check it again but seems my child has discovered where I hid it last time I used it. Seems my wrist was under 7"
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me too.. all f a sudden with the cool weather, the are where the dog ears were is really starting to flare. have to call for an appt. w/LE therapist. we didn't cover truncal.. i have a mikls "shaper" tank i wear. its' helping a bit, but is uncomfortable to wear for too long. can't wear compression vest for LE contraindicated w/stroke disease.. will wrapping help the area? got any links?? thanks, ladies.....3jays0
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I swear I heard about surgery that removes a few lymph nodes from your leg and puts them in your underarm as a treatment for LE. I hope this is a possibility.
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KittyDog, my upper arm is bigger and out of proportion to my wrist and lower arm, so an off the shelf or ready made Juzo will not work - I have to get a custom sleeve and use Juzo Dynamic. But, according to my measurments, both Lymphediva or Jobst sleeves should work as they have a wider from-to range than does Juzo. I tried a Lymphediva and found it does not stretch to the measurements indicated, or at least didn't find the fit comfortable. Haven't tried Jobst yet.0
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Random thought..........
Posting here, since so many are frequenting the GRRRRRRRR thread.
Yesterday when I came on to BCO up popped an opportunity to take a survey regarding BCO, it's services etc etc etc.
I took it.
One of the questions they asked was something along the lines of, "How can we serve you better in the future?" And you were allowed to type in your response -- it wasn't a multiple choice, as most had been up to that point.
I responded that I would like BCO to update their pages regarding LE and that I would like to have a wider definition than 'arm LE' as is in the 'header' currently.
Anyhow,, I thought that perhaps if each one of us who has issues with LE would take the survey and then write from the heart when asked -- those multiple requests would tally up on some feedback that gets shared with those behind the scenes.
Just thinking out loud.
All compressed and headed to the airport to have two flights to get to Baton Rouge. Will drink lots of water and stretch my arm & make my DH do all the lifting and toting.
Sending happy vibes to all in the state of GRRRRRRRRR.
xx00xx00xx00xx
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