GRRRRRRRRR I HATE LE..........
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JO-5 You're so blessed to have insurance! What I would give right now to pay $25 a visit. Glad it is working out for you!
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I had no idea you all were here! I will add that what peeves me personally is having to wear 2 size larger in tops to accomodate one fat arm. Any of the others of you tired of dumb clothes just so you're comfortable?! any solutions?....any old tulip sleeve Simplicity or McCall patterns around from the 70's? GIve me tips that have worked for you. Mine is mild compared to lots of you who have posted, but the size difference is real. Has anyone found exercises that work to tone that arm? thanks for this page. arby
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JO-5 - I'm sure you already looked but I spent time today parousing the step up/speak out site and there were links for the wrapping ... where to get it ... are there links on the site to where to buy the tape?
arby - My therapist gave me stretches to do that help my arm. Also there is a video by Sherry Lebed that has helped me immensely. I do it with both a compression glove and sleeve on. I'll post a link on where to buy it. Others will be along soon about clothes and what to wear. [[hugs]]
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Y'all can buy Kinesio tape at LymphedemaProducts, BandagesPlus, or NorthAmericanRehab. Shop around for the best prices, and do make sure you buy the right kind of tape -- they're not all created equal.
Arby, welcome! Have you done the Therapy Intensive with a good LE therapist to get the swelling down? I hope she taught you how to do self-MLD and wrapping so you have the tools you need to keep everything under control. I love the Lebed exercises too -- really works well for me. Keep us posted!
Be well,
Binney0 -
woo-hoo I got my new sleeves today.
I got my beige BE sleeve and Glove...and my "fashion week" black BE all-in-one.
The BC "sun-tan" does have sort of an odd pumpkin tinge..but YEA!
Have a great weekend all!
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GRRRRR.... I want to vent.. having rough 4 days.. upper and lower arm swelling... I can't seem to get it down I think it is from the heat and humidity last few days here in NJ.. Last week I was happy as a lark because my arm was not swollen too bad and I wasn't getting the pins and needles all down my arm.
Well I guess I am not allowed to happy..... for the next day I started to swell. My whole left side feels swollen.
Okay here is my question... i wear the sleeve and gauntlet but after 4 hours my fingers turn like a bluish color which means the blood is being constricted. I take off the sleeve and gauntlet and then put back on in a hour. Does anyone else have this problem? I am so depressed tonight... I wound up making a pot of gravy with meatballs and sausage.....then went to store and bought ben &jerry's ice cream....okay enough of my rant....
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mmmmm.....gravy with meatballs and sausage.......
sometimes a nice meal is the only thing that can make me feel human
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Does anyone know..... why someone can have a huge LE flair.... to a point of therapy.... wrapping... PT...... for like 6 months... then...... POOF..... LE is gone .... for like..... years?
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Laura, working in rad onc I follow patients who have LE: and some do just settle down after an initial difficult period. My LE therapist says that your body makes collateral connections.
I have seen it, and am thankful ( and a bit jealous) of the women that this occurs for--and it seems kind of common.
But, there are also women who ignore active LE,and come in with progression.
Sounds like your LE is on the wane, right?
Kira
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I just want to say a big thank you to Becky on here! She PM'd me to ask if I was ok, sent me her MLD DVD to borrow- which has been a big help! My arm has been doing pretty well the past few days. Not as I would like it to be, but I feel as though progress is being made. I've been going to PT for 4 weeks now. Onto week number 5!
I had a family reunion this weekend. I ate terrible, and was in 90 degree heat all day yesterday. I thought for sure that my arm would balloon up (I had it fully wrapped all day) and I was just mentally preparing myself. Well I took my wrap off when I got back and my arm hadn't looked that good in about 2 months. This LE is so strange.
Estepp-I hope that's the case for you! I pray for it everyday.
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Well.... my LE is there. I can tell... but I have not had to wrap or wear any garments for some time. I am in the heat and sun all the time ( summer and a pool)....
I am not alone though... this is why I asked.
Three other ladies here ( my cancer center) had arms the size of Manhattan... for like a yr...... then POOF....... gone...... just like mine......... for about a yr now.????????????????? None of us are wrapping or wearing...????????
It is SO WEIRD. Why is this Kira?
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Is it more likely to just 'poof' and go away if you have it only in your trunk or your breast? Is it as likely to go away if it's in your hands/fingers/arm?
estepp - that's absolutely glorious yours is doing better! Hallelujah!
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Thanks Dawn. I have it in trunk... arm ( worst) and wrist. So... I have NO IDEA. ??
The ladies I speak of... have it only in the entire arm and hand.0 -
Laura, I don't have a good explanation, as the studies show that with untreated LE, the body makes all sorts of useless extra lymphatics--they showed pictures at the NLN conference
But I've clearly seen women improve.It's not gone, but it's a whole lot better. My LE therapist thinks it's because with treatment your body creates new, useful lymphatics.
I know that my hand was in super shape, and then I broke it! But before that, I still wrapped, but almost never used daytime compression. Now after the full court press since the cast came off in December, it's returning to that state. I smacked my hand on a ceiling fan this weekend--we're moving and I've been doing a lot and usually wearing compression, but after I cut it--right where I swell--I left off the compression for the rest of the day (and quit shop vacuuming...) and the hand was great. And, after two days of antibiotic ointment and bandaids, it's healing up. If there's a moron thing I can do to traumatize my hand--I'll find the way....
So, with LE there's stage 0 where it's there, but minimal, and stage 1 where it's clinically obvious. I think for some lucky women, and women who take care of it, you pushed stage 1 back to stage zero.
Laura, as you wisely wrote--it's still there--and we see posts all the time from women who say they've cured their LE-- but it lurks--but you've put it into remission!
Congratulations!!!!!! Thank you for starting this thread, thank you for giving women hope and a place to vent, and thank you for being realistic about everything!
Kira
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I hope we all can go into remission FOREVER!!!!!!!!
LE has its own reality huh?
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Hi, I am back from Florida. Had a good trip and my measurements were down yesterday at the therapist's so the driving 12 hours, heat, more sodium than usual did not hurt. I was careful and did all exercises, MLD, etc.
Melanie-Glad things are going better. You are handling this so well at 27. I am not sure if I could have. It is enough at 63. Hang in there kiddo.
JO-My therapist does not use the pump except in extreme cases and she said mostly for leg le. She did remind me to do deep breathing whenever I am still and think of it. I don't know if I could constantly deep breath all of the time either.
A remission sounds wonderful but my therapist says with me in Stage 2 it probably will not happen. She wants me to wear my sleeve/glove or gauntlet (compression 2) and night sleeve for a year then see if we can decrease compression and have periods without. That is dependent on my swelling staying where it is. Of course if I flare back to wrapping. I am going to faithfully keep up the exercises and MLD, etc. I have continued to decrease or stablize in swelling since I started with her.
I was offline for four days as I was too stingy to pay the $16.95 daily usage at the resort. That would buy a lot of LE stuff!
104 degree heat index here yesterday. I hibernated.
Becky
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Question about the pins and needles down arms.
I went to therapist 3x then had to quit because I could no longer afford it. She told me the pins and needles would go away. They do but then they come back with a vengenance. It now hurts in my hand as well.Is there any specific excercise to help get rid of them?
I have been wearing my sleeve and gauntlet but I have to take it off for an hour or so because my fingers turn blue
thanks
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njbhwgirl-I started having pins and needles in my arm after about ten weeks of wrapping. My new therapist thought it was from being wrapped too long. I was wrapped 24 hrs a day for 12 1/2 weeks. When I went to day and night sleeves several weeks ago the pins and needles have gradually started subsiding. If your fingers are turning blue they may be from the sleeve/gauntlet not the right fit. It might be causing the pins and needles. Becky
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I had pins and needles shortly after surgery. It hurt off and on for about 8 weeks until I noticed swelling...since my arm has been swelling though, those feelings have gone away. I kind of attributed to my arm making room for extra fluid- then the swelling occured. =( It kind of felt like a sprain to me.
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Becky, what good news about having no issues from all that traveling!
Congratulate yourself on managing all of that so well -- brava!!
NGirl, the pins and needles may well be caused by your poorly-fitting garments. They should NOT be turning your fingers blue. Wrong fit, wrong compression class, or wrong fabric could be causing that, but it needs fixing, for sure. Do you have swelling in your hand? If not, you might want to look at an off-the-shelf gauntlet. Even an Isotoner therapeutic glove might be enough compression without causing you there problems. Both of those are fairly cost-effective, but you might try the Isotoner first. I'm so sorry you're struggling with all this stupid-expensive stuff!
Jo, tell her no more pumps of any sort, and learn to wrap. Wrapping is a pain to learn, but it gives you SO MUCH freedom when you know how to do it and can gain control of your LE whenever it throws you a curve. Especially at Stage II it's time to get serious and learn what you need to know. Wrapping is part of the gold standard protocol -- the pump and the kinesio tape are not. They may be nice to add at some point, for some people, but first things first! She sounds like she knows her stuff, but she's doing you no favors to not do the best first. JMHO, of course!
Golly, it's hot here today! And so humid. I'm holed up indoors wondering why all that bright sun outside my window should strike terror in my heart!
Ahhhhh, LE -- grrrrrrrrrrrrrrrrrrrrr!Hugs,
Binney0 -
Jo, the best way to get the swelling down, bar none, is to wrap 23/7 for two weeks or more. It's clumsy but it's magic.
Also MLD daily. After it's down you can order garments to the new size and you can use kinesio tape as part of your management plan. But for initial therapy it's MLD (by hand, not pump), careful skin care, 23/7 wrapping, and exercises while wrapped. If she's leaving it up to you, that's what you should "order."Some therapists find it hard to impose wrapping and garments on us -- they want to make it "easy" for us. And in all fairness there are plenty of LE patients who seriously object to those things or refuse to be compliant, even for a few weeks, and that's got to be frustrating for therapists. But by far the easiest treatment is to do everything that's necessary up front, teach us how to do it all ourselves, and THEN let us decide what we will and won't do.
Get your money's worth!
This is hard stuff, no question about it. Tell us how we can help, Jo.
Gentle hugs,
Binney0 -
Well, here's my GRRRRRRRRRR - my air conditioner isn't working! We're not sure if it's the circuit or the air conditioner itself but I told my dh there's no choice, we have to get this fixed ASAP. I really think he doesn't feel extremes of temperature since he rarely wants the heater in the winter or the air conditioner in the summer. Well, fans just won't cut it right now.
I've been inside during the day mostly but today I was outside for a little while. Let me tell you, I thought the house was hot but it was like walking into an oven outside! I didn't have my sleeve on at the time (I was feeling rebellious today!) and coud actually feel the difference in my upper arm when I was outside. Rebellion quelled.
Leah
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I'll just put my two sense in..I love to be wrapped! I know it limits motion and all but it's the best thing that works for me. I haven't had a therapist though that tried anything else. They've also set me up with a physical therapist to do some light weights and stretching after each session with the LE therapist. My arm feels so much better! It's down slighty but I'm so much happier with the way it feels. I would suggest wrapping too. It took me a few weeks to get the hang of it, but I don't mind it too much now just knowing how it's going to feel. I've been wrapping for about 3 months now...and that's a whole other story. Maybe I'll get back on a tell it in a bit after dinner.
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I just returned from Florida Saturday and had no problems with worsening of my LE at all. I was so thrilled to be able to go out and eat or go shopping without wearing sleeve and glove. I would wear them until we reached our destination then take them off and as soon as I got back in car, put them on. I even went to the beach and got a nice tan. I kept my arm elevated while sitting in a beach chair and used plenty of sunscreen. I ran or biked daily and last day there I felt brave and cycled 15 miles and then ran 3.1 miles. Always exercise with sleeve and glove on and then keep them on for at least an hour afterward. I felt like I was constantly measuring my arm. I guess, I am still in disbelief that I was able to do everything I did before BC. Love having most of my life back. Still have reconstruction to go through and have 4 more Herceptin to go.
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Oh darn. I went outside to see some fireworks and those darn moquitos ate me alive through the spray and my sleeve. My arm has been doing good. I have at least two bites on the elbow and three on the forearm. Dang it I should have stayed inside. I put neosporin on it. I am going to go ahead and take my zyrtec for the day. ugggg fingers crossed.
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Kitty Dog, when I went to the fireworks a friend had one of those "off fans" that you can get at HomeDepot, it was amazing. Usually I am scared to go out and soak myslef in bug spray, but this was fabulous, no one got bit- it "cleanses" a whole area. I had anothe rcellulitis flare, it was pretty mild, just using amoxycillin. Had a horrible argumanet with my Infectious disease dr, I may have to change drs...went to urgent care for a UTI (which almost always follows teh cellulitis anyibiotyic doeses)...feeling crappy, arm is "full"...blah blah blah, hugs terri in hot hot hot MI
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JO- no not doing LEbed excercises..where can I get video? I was fitted for a sleeve.. Juno one. I find myself more swollen when I wear it. I went to gym tonight and worked with one pound weights during class.Everyone else was using the body bar but I refused to do it because the body bar is what triggered my LE in the first place.
Binney: I do have swelling in my hand sometimes..The pins and needles are without the sleeve not with it. Since coming home from gym it feels 100% better.. I only feel it slightly.
Nurseronda: wow...great for you so happy you enjoyed your trip
Becky: OMG 12 weeks of wrapping. I totally applaud you I hate the wrapping . I cannot sleep with it at all.. It is painful to boot. At least for me.
TerriD: I am sorry that you got cellulitis...even if it was mild..so so stinks. Hope you are better now
On the highlight for me, I am going to Jamaica in 3 weeks. After one year of surgeries, chemo and my husband passing, I am so looking forward to this trip. Myself and 6 other girlfriends are going. They have waited for me to be comfortable within myself . RIght now I have newly reconstructed boobs and hair. I was so ecstatic,And boom... I get this darn darn damn.. LE and am terrified that my arm will swell horribly due to the high heat and humidity in Jamaica. I just pray every day..
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Hi Ladies, I've been out of touch traveling for the last two weeks and upon my return I met with my family practice Dr. That removed a mole from my back on my LE/cancer side, I should have the results next week. However, my back has really swelled and has been quite uncomfortable. I have an appointment with my LE therapist tomorrow, fingers crossed we can move some of this out!
I'm trying to gear up physically and emotionally for an oopherectomy next Thursday. I am dreading it so much!
On the day of my appointment, my dr wanted some lab work done, the lab was very nice and they were happy to avoid my arms, however, after five sticks in my feet (which were awful) and the veins blowing we finally gave up and went for my at risk arm, the lab techs felt terrible as I did. I couldn't believe how painful it was. Help! I don't know what in the world we are going to do next Thursday when I go in for surgery and have to have an IV. The techs 4 of them all said that don't have any veins in my feet/ankles that could support an IV.
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Christine, this may sound awful but for surgery sometimes they can use your neck. Yeah, sounds terrible but it might be OK. I had an ooph in Nov. It was done laparoscopically and I had NO PAIN post-op. Surprised the heck out of me. Most people have trouble with the gas they pump in but I was very lucky that I didn't. I had pressure on my stomach so I could hardly eat but I didn't feel sick, just no appetite. I told my dh that now I know why lapband surgery works!
Leah
P.S. When I say I had pressure on my stomach I don't mean that I felt pressure, just the lack of appetite from the pressure.
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Christine--I have almost absolutely no veins that work on my unaffected side (left). For my bc surgery a chemo nurse came in and put the IV in my index finger (after many sticks elsewhere on my arm). It worked. Usually they can get blood from the back of my hand. My veins tend to roll and blow. The back of my right hand was always my best vein and now that is out. I dread when I have to do bloodwork. My GP and onc coordinated so that it is done as infrequently as possible. Good luck to you next week. Becky
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