How often do you wear your sleeve/gauntlet?

I wear 10 - 12 hours and when I think I overdid it I wrap. So far so good. I would love a flexitouch, but I wonder if it is beneficial for my mild LE.

I want to play golf too.  I always walked and carried my bag before le,

I've never golfed or wanted to (well other than putt-putt golf ).  I do have a new 'passion' since LE though - flyfishing.   It takes a lot of arm use and I've never had any problem at all doing it.  Talk with your CLET and see what they say.   My 'Guy' is very encouraging for me to flyfish (and anything else I want to do).  The more I do - the less issues I have.  But we are each so different.

mcgis - If you don't have one for hiking/walking, you might want to look into a hiking stick.  They do help as arm and hand are not 'down'.

I'm not really a hiker as I prefer to either have 4 legs or 2 wheels under me but we do the Crazy Horse Memorial Volks Marche every June.  It's 7K from the parking lot up to the arm on the carving (quite a climb) and back down to the parking lot.  Long story shorter - last spring Hubby bought me a hiking stick,  He then got one for himself.  We did the Volks Marche and YES I really liked having the hiking stick and even my "doubting Thomas" Hubby was happy with using his stick.  Depending on where you live/walk a stick can deter loose dogs that 'challenge/attack' in your area.  Just my thoughts!

I'll chime in here, although I'm pretty new to all of this, and haven't figured any of it out, yet. (I've only been dealing with LE for 4 months).

I wear a gauntlet/sleeve all day while I am awake.  I don't know if it helps or not.  My LE is considered mild.  I have tingling and aching in my arm, but I don't really experience that when wearing compression garments.  Strangely, it seems that when I take everything off at night, I get LOTS of tingling and some aching, too, for awhile.  I can see my hand swell.  It makes me wonder if the compression garments make it worse!  Especially because my swelling has consistently been better in my hand when I wake up in the morning, which doesn't make sense since I am sleeping in a recliner (post exchange surgery), and my hand is definitely not elevated! 

In response to how many women have LE, I can tell you that I know several people who have had cancer.  They all had lymph nodes taken.  I would say 6/10 of the people I have talked to have LE symptoms, but I am the only one being treated.  They say they have mentioned the 'swelling' to their doctors, and are told that this is a common side effect from surgeries involving lymph node removal, and not to worry about it.  To be honest, I kind of wish this would have happened to me!  They are going on with their lives, no compression, no restrictions, no 'being careful' about ANYTHING.  And, they are just fine.  Also, I have at least 1 friend who said she struggled with LE for about a year, but thinks maybe the lymph 'created more pathways'.  She no longer wears compression EVER or thinks much about it EVER!  She had LE in her leg, and she just went on a 76 mile backpacking trip through the mountains of NM with her sons.  She was going to bring compression, but forgot.  She said she did have some swelling, but it seems to have resolved itself since she got back.  I try to imagine this....flying, hiking through the mountains (at high elevation)...on her feet from dawn until dusk.  She had no problems.  That may not ever be me, but it does give me hope! 

I have, of course, told others that their 'swelling' and aching is not something to be ignored, and they should be seeing a CLT, but ...their DOCTOR told them it was nothing.  And so....it's nothing, as far as they are concerned.  I know  I am not reporting any kind of a scientific study, but it is amazing when you ask people...just how many do, indeed, have symptoms but either didn't know they were worth mentioning, or they DO mention them, and are told by doctors that it is nothing.

I'll swell even with the sleeve for no reason.

I might suggest you keep a journal listing foods, bev ( like a diet diary) and activity.

You may find there IS a reason ( excess sodium, less fluids, weather temps etc etc ... I hope you do find an answer .  We all seek some measure of predictability I guess.

Good Luck.

Carol mentioned LE  being systemic.  My DRS laugh at me when I say that. With the 'odd flare' that I had last yr in my chest ( Lasted mos) after a mammo and will flare a bit to this day, I take nothing for granted with lE. It IS systemic.  I swear if God came down and told me I was wrong, we would argue !  My DRS think I am Soooo paranoid not to have my BP take ' in the 'good arm".  Guess what ? I have LOW  LOW  BP - dont care  for someone to confirm it after all these yrs. I suppose if it was high , I might have an issue.

In PT for my knees , certain leg exercises were flaring my LE, they said it was impossible since the LE is in my arm.  Activity flares mine- period.

I have fairly mild LE, and for myself, do not get much if any benefit from my sleeve/gauntlet.  If I was going to lift weights I'd wear it, or if I was going to fly, I'd wear it.  My PT tried an experiment with me and I wore it every day, she measured me at my next appointment and there was no difference.  So, I don't bother.

JWoo

I went to weight watchers to lose a few w/out exercise. It really works.

In the meantime, do look at the stepup speak out site for  a proper garment for the truncal.

http://www.stepup-speakout.org/breast_chest_trunck...

I use something very similar to the WEAR-EASE and I LOVE it. LOVE  a compression garment ?!!!!  YEP!  Honestly, if I did not have LE, I would wear it !

The one I wear is really a sassybax, and these are pricey, but this helps me a lot and is very very comfortable.NOT covered by INS. though.  Wash with care! sassybax.com  (NOT " made for " LE)
Good Luck to you!

Laurie,  thanks!  I'll investigate that DVD.

*NEWS! I need your help!

Hi All,

I may post on a few threads… hope you will indulge me , but will seek replies on the new LE thread “ GARMENT for truncal”

There, I posted about a great top that love for truncal LE made by sassybax.com :

TORSO TRIM TT03: http://www.sassybax.com/search.php?search_query=TT03&x=0&y=0

They also make a bra with BC pts in mind

Celebrate Life bra : http://www.sassybax.com/search.php?search_query=celebrate+life&x=0&y=0

PLEASE go look at that thread when you get a minute.

The owner called me today and she is wonderful! She is very open to the *possibility* of selling these items as garments that we could buy with our health ins. NO PROMISES because she needs to know HOW to do this and what it would take. At this point, she and her husband run the business out of the home and if it requires too much work, they may not be able to take it on, BUT – she would be happy to!

Please post on the “garment thread” and/or PM me and tell me anything at all that you might know about how to accomplish this or who to get in touch with.

Many Thanks!
Laurie

California girls !!!

Where you get your sleeves?

Wish all best!.thank you!

Binney, thanks for the tips. I will def  be contacting the airlines once I get my tickets, and checking regulations wherever I go. I am really hoping that i can find something else to control this before then, as I really don't want to haul that around for 2 weeks  I am trying my best to be an under-packer instead of my regular over-packer self since my friend will be carrying the majority of the luggage due to my LE.  

I'm also wondering about backpacks. Not a HUGE one, just one to carry instead of a purse. I have one with really wide padded straps. 

Anyone have experience with a backpack for extended periods? We'll be walking 8+ hours a day, and I think a shoulder or across the body bag would seem worse, but, def am looking for other ppls opinions and experiences. 

I'll be wearing my sleeves and gauntlets pretty much the whole time, I am sure. Just to keep everything in check. 

I'm not loving this new post-mastectomy world. Better than the alternative I guess

mcgi,thank you for your answer.I,m 5 years from surgery,but my arm steel swollen.

be well,feel good.All best!