GRRRRRRRRR I HATE LE..........

I have been battling LE for at least 5 years. I'm back at the LE therapist and getting my arm wrapped. I finally got the tactile machine which I love, but I feel like I hit a wall. At first my arm was 35% larger than my right arm and now it's been at 17% for over 6 weeks. I still can't wear my wedding rings and typing this is tough with a wrapped arm! The only times I have had no issues is the very beginning and when I lost 35lbs in 2017. Taking arimidex makes it tough to lose weight, but I don't want to go back on the diet I used (eating their food). December it'll be 7 years of arimidex and I can go off of it. Maybe then I can lose the weight

nunor I have felt that ripped pain you describe when I have moved in a certain way and have avoided it! That stretch you do was instructed to me to do when I had a back issue long before bc. I'll give it a shot, thanks!

HomeMom – when my LE blew up and got too big for a regular compression sleeve, I got a tribute sleeve night sleeve and glove. I wear the sleeve which most of the day and night. It is chipfoam with Velcro straps. At night I use the Tribute glove (looks like an oven mit) .My arm looks quite mangled when I take it off, but I the LE is getting better. I also use a piece of Medi foam in a regular compression glove during the day which seems to be keeping my hand under control. The Tribute sleeve is easy for me to take on/off, unlike wrapping. I got mine from an official dealer who measured my arm.

Runor – thank you for the stretch tip. Up to mid-Dec I was doing a variety of stretches, but not that one. In Dec LE really blew up and really limited range-of motion, doing very little stretching now, because it is just so uncomfortable, especially at home without the mats at the gym. But I will give it a try. Got a pully exerciser that LE therapist suggested, and pull LE arm with the opposite arm just a little further than it can do on its own.

I have had lymphedema for 18 years due to removal of 24 lymph nodes after lumpectomy in 2003. I can't even remember how many therapists I saw, how many times I was wrapped, how many custom sleeves I wore, but for the last 11 years or so, I did nothing. No wraps, no sleeves, just normal hygiene, no vaccines, blood draws, or BP on that arm, and I am fine. Due to the fact that it is about twice the size of my other arm and I am self conscience about it, I cover it up in long sleeves, even in the summer. I have never had an infection in it, it never got worse since ending the wraps and I forget I have it most of the time. I don't baby it or pamper myself. I carry, push, pull things and nothing bad ever happened. Of course I am not stupid, and since I have both shoulders replaced, I am not going to do something that would hurt me, like moving or lifting something extremely heavy, but I don't limit normal activity.

I even had a complete shoulder replacement on that arm and it didn't get worse because they wrapped it for surgery. I used to obsess about it, but no more. When I had a recurrence of cancer and a mastectomy in 2019, it didn't get worse, and I didn't need any more nodes removed since that whole fat pad was removed in 2003.

I totally believe in being proactive and trying to prevent lymphedema, but believe in minimal care once it forms. I look back at all the time and pain I went through because of it and it never mattered in the end. Maybe someday they will come up with a cure. I know that most surgeons don't remove many nodes these days and that is a good thing. Prevention is best! I don't think most doctors care about lymphedema, their attitude is that it isn't their problem, they just refer to therapists. Therapy only goes so far. If you can keep the size close to normal using sleeves etc, great, do it! Just know that it is possible to live garment free and not have issues, if after years. you get fed up with it.

BTW, Medicare won't pay for garments so once on that, it is another out of pocket expense. There are worse things in life.

VLH, this might sound totally stupid because I"m typing as thoughts are coming into my head. What about a compression stocking? I have never seen one. I do not know how they compare to a sleeve. But surely people buy stockings for LE in legs. Could you buy a stocking that might work for your arm? If you can find a compression stocking ready made it might be cheaper than a custom sleeve? Now I have to google compression stocking to see how wildly off I am.

ABOUT THAT PROBLEM OF GETTING COVID VACCINE IN THE THIGH:

BlueGirlRedState and others having trouble finding someone to do an alternate site for your Covid vaccine, I just got mine done (FINALLY!!) by a local Hospice organization. They're non-profit and they're giving their own patients the vaccines, obviously, and they told me they have extra so are willing to help people like me who can't otherwise be vaccinated. They suggested I let you all know it's a possibility in your own areas as well.

The New York Times recently had an article about this being a problem for those of us dealing with LE (bravo for them!), so at least the word is starting to get out there. As usual, we may have to do some advocating for ourselves, but when we let people know what we're dealing with we help more than ourselves--we help each other!

Onward!
Binney

T-rex arms, BA HA HA! That killed me. 

VHL and Piper - T-rex made me laugh. A cartoon I love, is a T-rex that has been given a selfie stick for a B-day. Now it could take selfies of it face rather than its chest. With reduced range of motion in affected arm, describes me well. I wore the night garment because my arm got too big for a regular sleeve. Yes, my arm looks like it has been in waffle iron when I wear the Tribute. I had lots of fibrotic tissue which seems to be going away, my arm is getting a lot softer as well as smaller. I have been able to wear a well worn regular sleeve, finally. My lymphatic therapist suggested it was very worn and to see if I could put one on that was not so worn instead. Another option ( it did not work for me) made by Juzo, is their "short stretch compression wrap". It has velcro to adjust snuggess. It just did not provide enough compression. Maybe adding "medi foam" would help?

Rumor, I like the way you think outside the box! Sadly, my "lymphedized" arm is as big as my thighs were in my younger days and I wore the long arm sleeve so an idea to explore.

Piper/Anne, interesting input on the sleep sleeve. Thanks for sharing. One thing I need to do is start using my pump twice a day since there is a shorter daytime cycle available.

Blue Girl, I've seen that graphic as a meme and laughed out loud. Long sleeve shirts usually hang around my knuckles and I joke about being assembled from spare parts. Ms. Frankenstein? My Amazon Wish List includes a T-shirt that says "T-Rex No Like Pushups." They also have one with a T-rex with a grabber in each hand gleefully declaring, "Now I'm Indestructible!" or something similar. Tee Hee!

Lyn

I'm trying to purge my cluttered house, BlueGirlRedState. However, I may reward myself with the T-rex shirt for donating 16 boxes of books last week. 😀

Lyn

You guys are so funny. I can't bring myself to purge books. Doing well with everything else.

Well, I could not resist,even though I do not need anymore t-shirts. I just ordered the combo pushup/pullup/weight lift, (cranberry color) but was tempted by the unstoppable one as well . Would like one for bookgroup as well - how would you turn the pages?

NotAsCalm - sorry about the cording. I hope you have a good LEPT who is addressing it.

Notascalm -  alliterative ailments alleviate angst. Cancer caused cording is controllable but crappy. I feel your funk over the flapping flab of frigging lymfffffedema!

runor!

Exactly