Well, here it is. Another club I get to join

Venting is a "good thing" !

I'm just 1 year from diagnosis of BC and 6 months from diagnosis of LE.  Not a great year.

BUT, I learned a few things so far

1. Don't look at Google images of LE, they do not represent you. They are the worst cases and years of neglecting to deal with LE. 

2. You're on top of this, you're getting help early.

3. This sucks and than it sucks more, but it can be handled and people with this condition live to do things they want to do.  So far that isn't working for me, I hiked, the rougher the better and that may have been going away due to age anyway, but I'm going to get back to the forests even if it is on the trails. My LE therapist has LE and plays golf. Kathy Bates has been in movies and had a series all while dealing with LE.

4. This takes time.

5. There is a lot of info here and on this site:  http://www.stepup-speakout.org/ it can help in the choices you make.

6. This is a good place to rant.  Rant On !  

hi Bippy, I have it too, radiation triggered it for me, then it went down and after a day of housework it came back I have a sleeve and a glove but today I wore them and was more swollen after a busy day using my arm. This is so depressing, can't believe there is no fix to this

(((Bippy)))  My fellow Floridian and LE pal. **sigh** it does suck.  Last year I went thru several months of he**ll  trying to get a solution for my truncal LE, which most people, including doctors, have never heard of, or seen,,, and have no idea how to treat. Thankfully I found the gang here who guided me in the right direction and were quite helpful with steering me to the websites where I found good info (stepupspeak) and ideas on how to find compression for my affected area.    We know how you feel!   Rant away!  We are here for you!!

Bippy, I know how you feel - I'm new to this too. I had a LE evaluation on 5/5 and have started having weekly therapy. I went from hearing "we're not calling it lymphedema yet" to "we can't rule it out" last week. My arm is responding very well to MLD but she put me in a sleeve last Thursday and I was NOT happy about it. I do have to admit though that Friday night was the first pain-free night I've had in over a year. I've had pretty much constant pain in my right arm since a few weeks after my BMX last year. I can deal with it during the day, but it wakes me up at night. I've actually had three good night's of sleep in a row now - amazing. I'm not wrapping or wearing any sleeve at night as of right now but just wearing it during the day and doing MLD is helping a lot.

I don't have allof the typical symptoms, no real visible swelling but my right arm does measure slightly bigger than my left. Prior to the start of therapy, my arm felt very tight and heavy, along with being achy and my rings were tight all of a sudden. I'm very hopeful that I can get and keep this under control because if it is LE, it seems like it might be a mild case. I hope you also get some relief soon!

bippy, with truncal LE and particularly under the armpit (that's my primary issue), lots of us find that wearing compression tee shirts is a great help. UnderArmour is one brand, and we find that their men's shirts work better than the women's versions, because they put a cap sleeve on the women's shirts that tends to cut into the axilla. A bunch of us worked with a small athletic/travelwear company in Minnesota, and they nicely created a compression shirt designed for women with LE. It was a fun group effort, lots of us did size-and-design testing, and while it may not be a perfect solution for everyone, so far lots of people are happy with the result. You'll find it here: http://www.gotravelwear.com/shop/

Wear-ease also makes a compression tee shirt, and it's quite expensive but may be covered by your insurance. And, you can try shapewear, although it's rare to find a garment that covers and compresses the armpit.

It sounds like you're feeling a bit more confident that you'll tame the LE beast, and that's great.

Bippy, exercising may well have set things off, because the body interprets unaccustomed weight, resistance, and/or activity as a source of stress and sends extra lymph to the rescue. So, one strategy to get your life back--to be able to do normal activity plus exercise for all its wonderful benefits--is to change 'unaccustomed' to 'accustomed.' Slow and steady is the only way to do this without creating problems along the way, and there's been some nice research to figure out the best approach to exercising and doing strength training so we can build endurance and strength without the process triggering added LE woes. Here's a resource: http://stepup-speakout.org/Handout%20doc%20for%20S... I have been lifting weights following these guidelines for about three years, and as a precaution, I always wear a compression tee under my workout clothing, and always am in my compression sleeve and gauntlet.

Oh, by the way, your sleeve prescription includes a compression gauntlet, RIGHT? Because if not, call the therapist back and request it. A sleeve without hand protection can send lymph to the hand, and if LE develops there, it tends to be hard to control. If the therapist is surprised or resists the idea, here's an article to show her: https://www.lymphedivas.com/en/hand-protection It's on the Lymphedivas website, and yes, they have an interest in selling gauntlets, but the author is Dr. Andrea Cheville, a noted LE researcher. She agreed to write the article for them after they were questioned by the Stepup-Speakout ladies, who were concerned that Lymphedivas was showing a lot of arms in sleeves without either a gauntlet or a glove. Not only did the wonderful folks at Divas agree to be sure to put gauntlets on their models, they took the extra step of explaining, via the Cheville article, why it's important to use a hand garment.

I'm so glad to see that you're putting the LE in perspective!

Carol

Yay for you Bippy!!!  I was diagnosed as Class 1 also.  I saw my LE therapist for about 4 months and she taught me how to do MLD.  I now only wear my bra and my sleeve when I walk or travel.  I do a lot of exercises and squeezing of a squishy ball of some sort.  I am sure you will know when you have done to much.  I sure can tell when my arm says "enough" and that is when my husband rubs my shoulder and side and we work on getting the soreness out together.  The main problem I have is mostly under the arm and when he hits a node sticking out, I certainly feel it, but after about 10 minutes of massage, I feel so much better and ready to go again.  I'm glad you have come back to being your "original" self again. 

There's some disagreement on needing to use compression garments while flying, especially for the at-risk (nodes removed, mostly) who don't yet have a LE diagnosis. But I fly often, usually at least four flights every two weeks, and I've watched flimsy water bottles shrink, expand, shrink during flight. That's enough to tell me that the cabin pressure changes, and if it's enough to bend the plastic, I want all the protection I can get to prevent the same from happening to my poor little lymphatic pathways.

Bippy, great news - I'm happy for you! Kicks, I'm not sure if your second post from last night was directed at me, but just in case it was - I'm not wearing a sleeve at night.

Hello everyone...yes..this is another club I get to join! I am wanting to avoid it, however, think it may be best to follow through with treatments, etc. I have a mild case of lymphedema in my right arm and they seem to think a little in my left. I have no pain or discomfort, however, started to notice swelling last year during treatments. Any advice? I am freaking out a little about the wrapping, etc, especially with the mild case I have. I went in for a consultation thinking I'd be directed on self treatment, etc. Oh well!!

Thanks for any help you can give!

Laurie