Bernice I think she is very busy when I posted to her last week. But I'm sure naproxen is a sweller! Not sure of others. I did tamoxifen but didn’t notice swelling but then I didn’t have le then. But I did keep a close eye on my arm size. We don’t need to swell though to be diagnosed with le but it’s a good indicator.
Hugz - the hand doc I saw wanted me on NSAIDS for 5-7 days - along with several specific hand exercises I have to do 3x a day. I settled for Advil instead of Aleve (naproxan), but expect both are 'swellers'?? I'm watching closely.
minus. Yeah sometimes we do have to pick which evil to work with when there are limited choices. How is the exercises. Can you go for walks
Still going to Silver Sneakers - just not doing all the hand stuff since the doc wanted me to lay off. If I really do all 3 exercises he gave me 3x a day, boy there's some pain happening. Yesterday I only did twice. Only taking one Advil instead of two and only at night instead of twice a day.
Yes, I can walk. Going to San Francisco next week. I'm not renting a car& will be walking everywhere for 3 days once I get off the cross town buses. Believe me, those hills are killers. I've got to dig out my Belisse Bra. I use it for flying since it's much 'harder' than the Wear Ease compression bras I use 24/7. Luckily I got a seat on the aisle so I'll be able to pump my arm.
MinusTwo - have a great trip! The Belisse is definitely a tighter squeeze!
minus. I forget what you had done with hand.Please refresh?So smart walking those killer hills. You will earn a extra glass of wine! Sorry about the pain. Ice...as much as we hate it for a few minutes if no open wound.
For beliesse type bras. Do you find them to tight around band? I find I'm sensitive just under fake boobs and it just grabs me unless I have huge band size.
The ortho surgeon gave me a tentative diagnosis of synovitis. The right hand is much worse (of course the dominant hand and also the side that had ALND surgery) but both are affected. Right hand particularly wakes me up from a sound sleep w/the pain. Can't make a fist. Not confident of grasping a glass w/o it slipping. He says it's possible that one or more fingers are trying to "trigger" and just not there yet. It's also possible it's either arthritis or partially arthritis. He's ordered blood work that I'll have done in early June. He says we're not looking at surgery yet (EEEK). In the mean time, I have 3 different exercises - 5-10 reps, 3x a day, each hand.
Oh - and he said warm water instead of ice.
I think I'll earn more than one glass of wine.
Minus. Well when you do it good you do it good! Both hands to boot! Wishing speedy recovery. Do the exercises or your Physio will fire you. Mine threatened me so I did double ankle exercises. It worked.
I try not to do my friends dishes because they ca slip out of my arthritis baseball gloves hands. I clear the table instead but must be really careful.
I was issued an arm sleeve and glove yesterday and OT showed me how to put it on correctly. I just need when traveling by plane only and I have an upcoming trip in a month. The OT suggested I wear these a little bit each day working up to wearing it 7 hours total. (1 hr before flight, 5 hr flight, and 1 hr after). Of course it's tight and is supposed to be but it really made my arm and elbows sore as I already have tennis elbow. Do these sleeves really need to be "broken in" or should I just wear it the day of the flight? I have no experience with this but I don't want to have a sore elbow/arm for the next month, and I'll be sore no matter what.
Maybe she suggested that because it's your first sleeve and it will give you practice putting it on correctly? Other than that, I don't know. With mine, I just needed to wear it on a regular basis (not just travel) so I didn't have your same experience.
Enjoy your trip!
I was issued a sleeve and gauntlet for flying but haven't had to use it yet (haven't flown and my LE is in my trunk). My LE therapist said the same thing--to gradually build up wearing it. I I guess so there are no surprises on the flight?!
If I were in your place, I would call and tell them it's sore, and ask if that's expected.
Breaking it in was important to help my arm and skin get used to it. I had some soreness at first but worked up to wearing it for longer durations so by travel day I wasn't uncomfortable at all.
I posted in the I hate LE thread so scroll on if you read it there
OK ladies, I have had my Wear Ease bra for a few months. (I think I bought it in January) what is the life expectancy of the bra? I wash it about 3 times a week. I place it in a lingerie bag and wash all my delicate items on a gentle cycle with detergent only no fibric softener. I then line dry in on a rack downstairs. I usually start the washer right before I use my Flexitouch that way I can lay it across the rack and it is dry by morning. The elastic is unraveling and the wide band at the bottom has no grip left. So how do you girls care for your bras? The other thing I'm dealing with is boob sweat! I've never been a sweaty girl but with this compression gear it's taking it to a whole new level. This will be my first summer with the compression bra, compression cami, and the wraparound chip bag. Last year they just had me in a sleeve and because I was still doing radiation. The recommendations for a good safe deodorant would be much appreciated. I've always use something general like Tom's this sweating is a whole new ballgame. My body is changed so much in the past year just trying to figure it all out.
Vara call Phyllis’s at wearease. She is eager to please and helpful.
It was replaced no questions asked!! What a awesome company!
Many people say they lay their sleeves flat to dry? My LE therapist specifically said to dry them in the dryer as that helps bring the elasticity back
I hang mine to dry after a no heat tumble for about 10-15 minutes or so. 🌻
I just got custom Jobst Elvarex garments. The rep told me to live with them for a week before contacting her about fit issues. But I'm finding the inner elbow very uncomfortable. It gets really red where the arm bends.
Did anyone else experience this? Did it go away as you adjusted? Or does this sound like a fit issue?
put silicon scar tape on inner elbow. Works like a charm also anti friction lotion that runners use to prevent chaffing.
Oooh, interesting. Thanks for the tip, hugz4u!
I bought a "glide" anti-friction stick. It does help.
Riteaid sells ScarAway tape. One tape lasts me about two weeks in elbow. Iam the winner in USA Olymphics for most sensitive elbows and finger webs. I got the gold medal for this event.
Copying a post I made on another thread. I have truncal & breast LE so I need more than sleeves.
>>>I have really sensitive skin, but I liked the Kinesio tape & it worked for me. I have used swell spots & they work. They can be ordered separately. How about a compression T-shirt? Below are three references. You can search under compression T-shirt in the lymphadema forum and probably find more.
RE: WearEase. They are great to deal with if you call them. Here's an old reference from the LE thread: I think some women here report being quite happy with the WearEase compression tee, https://www.wearease.com/collections/compression-therapy/products/compression-t?variant=17218205155371
RE: Go Shirt - another old 2015 reference - Ask for Margaret and tell her the BCO shirt if you can't find it. Some of us have tried a new shirt that you can find here: http://www.gotravelwear.com/shop (look at bottom right of the page; this product is new, and they don't have a photo of it on a model yet). Six or seven women in this forum tested the shirt for design, size, and compression fit vis-a-vis LE needs. I know that one person was not happy with the fabric and hopes for a deeper neckline and shorter sleeves, to better hide under other wardrobe items. But most liked the shirt and its fit.
Thanks MinusTwo! I have truncal lymphedema too, so those shirts sound really helpful.
all good suggestions.
Posted on a couple of LE threads but wanted to share this info here too, since one major hospital is saying we are no longer at risk with blood draws. Pooh Pooh.
Here's the latest seminar posted on line from Dr. Stanley Rockson at Stanford. It's an hour & 30 minutes - but I thought really worth it - even the questions at the end.
And here's a short summary. Long, but shorter than watching the seminar/lecture if you decide it doesn't apply to you.
5/30/18 talk at Stanford - Center for lymphatic & venous disordersDiagnosis, treatment & research Dr. Stanley Rockson is a guru -Only half doz other docs in the US. You may have seen him on NPR Still true - 1/2 the docs in North America have between 15-30 minutes of their entire medical training. Fascinating new research since the last seminar online in 2012. But scary what as he tells what most docs will say if you go to them with problems. Most important to PRESERVE working lymph movement which will PREVENT progression ANY injury to the skin - cut, burn, insect bite, rose thorn, small scratch. ANYTHING that traumatizes the skin and needs a wound healing response can bring on LE. Including pressure changes in an airline. And he talks about locations over 5000 ft. 10 million people in the US have LE. 90 million world wide With breast cancer - chances 15-20% of developing LE 90% of the problems develop in the first year but risk never goes away. So after 2 years, you probably have 2% for the rest of your life. How much you want to work on preservation & prevention depends on how much a gambler you are??? If you get past that 1st year, statistics show you may not be prone to be pushed over the edge to progression. But if you're in the 1% - do you want to take that chance??? With only 1-4 nodes (like SNB) you have only 1/4 of the risk - but you can get LE with only ONE node out You have to determine what you are willing to risk. Yes are finite risks with surgery on parts at risk - even if LE is dormant or sub-clinical. Weigh the benefits. Even carpal tunnel surgery New bio-impedance surveillance - if treat REALLY early, can reverse the problem Coming - Biobridge implant at time of breast surgery
AND FINALLY... here's the link to the lymphatic network. Select 'resource downloads' on the right for TONS of facts.
minus. Thx for all info. Will listen to Stanley's talk. I met him. Interesting man.
Regarding getting one node out. I was recently diagnosed full left truncal breast and arm le (with NO nodes out in axillary ) Due to prolactive masectomy surgery on non cancer breast. Yah CRAPSHOOT. Now getting custom garments for that side, bummer and I'm so proactive!
Oh geez Hugz. So sorry to hear this. And I KNOW you're proactive and NOT a gambler. It just never ends.
LE in the summer - Great article from CURE reprinted courtesy of WearEase
picked up my lymphdiva sleeve yesterday. It was the first day I heard of donning gloves - what a fantastic invention