GRRRRRRRRR I HATE LE..........
Comments
-
Oh wow - just scroll over the heading at the top. Living with LE & Lymphatic disease has an amazing amount of information. And check out the research & the news &.....
0 -
I'm ready to cry! I got bit by something 2 nights ago while I was asleep... (in my night garment ) the bit is right in the bend of my elbow. I have had a head ache for 2 days, been dizzy and now I have a fever. I hope this is not the start of cellulitis!
0 -
Oh No vargadoll - I'd recommend you get to the doc first thing tomorrow. Don't let it wait over the weekend. Good luck.
0 -
Vara, circle it in pen and see if it grows red over pen. If so go to emerg. Or any flu like symptoms. Mention that you can't clear infections in that arm because you have no lymphatic system and you can get cellulitis really easy and it spreads like wildfire and is very dangerous to yoour life Some staff don't know what cellulitis is.
If you have antibiotics on you then can start them before you go to emerg if you feel it's necessary or if your far from emerg. I have a stock at home just for this purposeand had to use them lastAugust.
Put antibiotic cream on.
Oh yes don't you hate it when the bugs pick the le arm only. How do they know that!
0 -
Hi everyone. I’m checking into this forum looking for ideas to manage lymphedema in my breast. I had a double mastectomy and reconstruction with cancer on the left. They only took 3 nodes, all clear. I had 4 rounds T&C due to high Prosigna score. I had some internal heat in the left breast soon after surgery, but no swelling until about 8 weeks after chemo, four weeks after I started Arimidex Aromatase Inhibitor. My oncologist sent me to Lymphedema therapy, but before I could get started, I got Cellulitis above the node scar.
I’m on my second antibiotic, and the Cellulitis is finally looking better. I’ve had 3 MLD sessions with the lymphedema therapist, and I’m faithfully wearing compression tanks. My reconstructed breast is hard and swollen on the lymphedema side. We assume it is lymphatic fluid. It’s not acting like Capsular Contracture.
Now that the Cellulitis is clearing up, I can start exercising again , but I was exercising before all this started. Not heavy weight lifting. Pilates and walking.
In my last therapy session, I learned self MLD tailored to my specific area. I’m trying to do it morning and night.
I would really appreciate recommendations for managing this, including holistic options, exercises, supplements, etc. to get this under control.
Lisa
0 -
Lisa: Hugz & Binney and several others know more than I do and will chime in.
In the mean time, below is a link for a great site that several of our knowledgeable LE people have worked on. There's lots of good information and will no doubt prompt more questions. Sorry you've had to join us.
https://www.stepup-speakout.org/
0 -
Thanks girls! How I got the bite under my night garment is beyond me! The only possible solution is that it picked up a insect when I picked it up from the fitter. I feel stupid that I didn't wash it when I got it back. This LE is definitely a live and learn process! I don't have a fever today and my head ache has eased off. I'm going to circle the bite for sure. Excellent idea. So thankful for you "seasoned girls" just sorry anyone have to experience this miserable condition!
Lisa- I have LE in my breast the worst! My arm is mild. I had a lumpectomy and 3 nodes removed. The surgeon thought he had 2 but a 3rd one was hiding. I pretty much have had LE since surgery but didn't realize it until I had some cording in my arm pit about 6 weeks after. I thought all the swelling in my boob was just surgery related. When I went for my "set-up" appointment with my radiation oncologist she took one look at my boob and went.....ohhhh....we got to do something with that! So here I am a year and almost 3 months later wearing compression gear when it works for me. I have found a pretty good schedule and if I stick to I can manage the LE. I wear a compression bra and chip bag during the day. My compression sleeve is on from 10ish- to after I put my girl to bed (I have an adult multiple handicapped child) then my night garment I wear 6 nights a week. One night a week I sleep naked! The little rewards that make this doable!
0 -
Thanks Vargadoll. What compression bra do you wear? I’ve got an appointment Monday at Pretty in Pink, a local store that sells compression garments, but the shopkeeper says she has to have an order from my doctor to sell me one. My LE therapist has been trying to get that for a week. Before I knew I had LE, I could not find a comfortable bra. I’m supposed to go wireless and they roll up under my boobs. Since the swelling started. I’ve been wearing OTC compression tanks without a bra. Since I’m reconstructed on both sides, it looks fine. Also what is a chip bag? My LE therapist made compression pads today. I’ve seen the pricier ones online.
Lisa
0 -
orange. Welcome. Do visit that we site minus linked to for all le education and exercise hints.our smart girls here developed it and it's the best out there.
Best to start with one pounds weight and go up slowly after a couple weeks to two pounds if you have no le flares. If you do then back off the weight till you have mastered it. I know it sounds stupidly light but a university program developed specially for us suggests this method. If you quit you have to start over. Ugh
Chip bags or swell spots are forms sewn into Channels with chips of foam in between. It helps move fluid out of breast, back or wherever you have it. Sounds like you need to fit one under your compression tank over your breast.Try sleeping in it to. Report back to us if you have questions.
Vara. Good your watchful.
0 -
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.
Thank you in advance I might copy this and post it in the all things gloves and sleeves.
Teresa
0 -
Truthfully Vargadoll, I wear a cotton knit tank top inside out underneath my bras and only wash them once a week.
0 -
GmaFoley- do you wear a compression bra? That's what' making me so sweaty. My boobs are mashed in this thing! I try to keep them lifted up nut there's a perfect gap under there for sweat to pool. I have a small frame but DD boobs. What brand tank top do you use? It' worth a shot to absorb the sweat. I don't want to add a rash to this mess!
0 -
GmaFoley- do you wear a compression bra? That's what' making me so sweaty. My boobs are mashed in this thing! I try to keep them lifted up nut there's a perfect gap under there for sweat to pool. I have a small frame but DD boobs. What brand tank top do you use? It' worth a shot to absorb the sweat. I don't want to add a rash to this mess!
0 -
I wear the carefix front closure post op bras - they have upgraded them lately but this one below is like the one I wear.
https://www.amazon.com/Carefix-Marianne-Front-Clos...=sr_1_1?ie=UTF8&qid=1525710056&sr=8-1&keywords=carefix+post+op+bra
As far as tank top I just got the ones at Target - they are cotton (no ribbing kind) they are smooth fitting and soft.
0 -
Varga - do you maybe need the next size up in Wear Ease? They are so helpful on the phone I'd give them a call and describe what you're experiencing in terms of 'crush' and the sweat and also about the average life. I returned one back when I first started wearing them since the elastic seemed to stretch out too soon.
I can't remember - do you have just truncal & breast LE? I keep a WearEase Sydney compression bra on 24/7. (except when I'm flying & use the Belisse) I change to a different one for night. Luckily I don't sweat much but I only wash them once a week. I've got four - so actually only washing each one every other week. They last most of a year before I see some stretching out & threads unraveling. I did notice that the magenta one I used for water aerobics doesn't last nearly as long being in the chlorine from the pool three times a week.. Sigh.
0 -
MinusTwo- I do have breast and truncal LE. My arm isn't an issue with swelling just the cording. Can you wear the chip bag that wraps around your back with the Sydney bra? I saw that one online and really like the way it looks. The local Orthopedic appliance company had a book full of different bras I'm waiting on insurance approval to get two new ones. The lady that works there was going to order six or seven different kind to see which one would work best for me. I'm still learning! Thanks ladies
0 -
Vargadoll - I don't believe I've ever seen the chip bag you're describing. I just have a couple of smaller ones that work fine with my WearEase.
Sounds like you've got a knowledgeable lady working with you. Hope she comes up with some interesting options.
I'm trying to find something to wear for a wedding in July when the temps will be around 100. I'm resigned to no boat neck tops, and really no scoop necks. Those necklines show the bra straps whether Belisse or Wear Ease or anything else sturdy. I try to stick with "V" necks but they are harder to find, and mock turtle necks in the winter. And certainly no sleeveless anymore except around the house.
But like you, we don't have much 'winter'. It was 94 today and at 9pm it's still 82.
Forgot to mention - of course I do have to wash the bras when I work in the garden, but that's over for the season.
0 -
The cellulitis above my breast and swelling in my breast have not responded to antiobiotics and lymphedema therapy, so today I'm having a breast MRI. Hoping it's something easy to deal with, but scaring myself reading about inflammatory breast cancer. I thought I was getting better after switching from Keflexto Clindamycin antibiotic, but now it seems to be getting worse again. Less sensitive than at the beginning, but still not comfortable.
0 -
Orangedaisy- bless you!!! I had cellulitis around my elbow and that was bad enough! I wish I words of wisdom but I'm a newbie to LE Just under a year dealing with this crap! Trying not to worry is easier said than done. I still get nervous about any little itch or pain! You came to the right place to express yourself because we understand! Lifting you up! Sending good vibes for peace and calm emotions from the mountains of NC!
Edited to add...I just saw you are in TN. We are both in the mountains!
0 -
Has anyone got stuck and their compression bra? My zipper is hung I can't get it to go up or down. I have a doctors appointment at 4 hoping my husband gets home in time to get me out of this LOL!
0 -
orange. Goodness if this is cellulitis I hope they put you on IV antibiotics. If not go to emerg ASAP and ask. You might need to be on a continual antibiotic regime. Let us know your mri results.
0 -
hugz4u, I’ve been on antibiotics for 20 days. Keflex then Clindamycin. No fever. Blood counts normal. No blisters. It hasn’t gotten worse since the first few days. In fact it got a little better when I started Clindamycin. The skin is much less sensitive than at the beginning. It just isn’t clearing. So far doc doesnt think hospital is needed. They keep reminding me if I get a fever or chills go to the ER.
0 -
Orange sounds like your vigilant. Good.
0 -
Vara Are you still hung up in zipper? How did you get it down. My jean belt loop always gets caught on my curly lever door handle. I have to stand on my tip toes and un twirl it to get loose with hand or I’m stuck there till I die. It's scary and causes a sweat if worry. I have to be calm to untwirl it. I'm becoming a goodie contortionist. Yes I need new levers that are safer.
0 -
My ortho hand doc said to try Advil for a week or 10 days because of "tenosynovitis". He said it also could be a trigger finger that just wasn't quite ready to trigger yet. Basically my hands hurt most of the time & I really thought it was probably arthritis. I can't see that Advil is helping much and I have confirmed (through personal testing) that is does cause diarrhea for me. Not pleasant since i was on vacation.. I'm hesitant to do Aleve dur to the increased possibility of swelling. I see him next week and am going to ask about Celebrex. Anyone had any issues with NSAIDS that effect the LE? Thanks
0 -
Maybe I don’t have LE. Here’s the MRI results.
Between skin and implant there is a crescent well-circumscribed heterogenous high signal non enhancing structure measuring 7.1cm long, 5.4cm AP, 13.0cm transverse causing extrinsic compression of the anterior aspect of the implant. This was mistaken for fatty tissue on previous ultrasound. This most likely represents phlegmon.
There is no enhancing mass or adenopathy. There is a slight increase in vascularity around the implant capsule, consistent with an inflammatory process. There is mild dermal edema, also consistent with infection.
Fluid is too thick to drain. Doc recommends removing implant and all or part of dermal matrix. Clean cavity. New implant, but do not replace dermal matrix. I may have some rippling, but I don't care. Test fluid during surgery. If highly infectious, leave implant out for 2 - 3 months before replacing. Same day surgery. 2 - 3 hours long. As soon as insurance approves, I’ll schedule it. . He took me off antibiotics today. It there is infection, it wants it to show itself during surgery. Just gotta stay very aware of how I feel. He’s never seen this happen seven months after surgery. I blame chemo and the steroids that suppress immunity.
0 -
Orangedaisy -wow!! That was alot to take in! Hang in there! Lifting you up!
YES!! DH got home in time to get me out of that bra! Turns out there was a string or fuzzy piece of fabric woven into the zipper. He was able to pull it down with a pair of pliers. He said just cut it off...I said DO YOU KNOW HOW MUCH THIS BRA COST??? It was my black Bileez bra and it had never zipped or unzipped easy since the day I got it! It zips easy now so I think the fuzz had been there since I got it. It was at the bottom out if my visual field ( can't see over my boobs..lol) so I had no idea!
0 -
I feel like someone has kicked me in my ribs on the LE side. I can barely move. Any ideas what could have caused this? I doubt I will be able to see my PT today and I am miserable!
0 -
Twist wrong sleeping? I kink my ribs every once in a while. Pt might actually help they can get the kink out.
0 -
That's a possibility GmaFoley. I should have added I've had a low grade fever for 2 days now. It's hanging out at 100 or 99. I have no other symptoms other than the pain in my ribs on my backside and a random pain occasionally in my lower abdomen on the right side. Hoping to get into PT tomorrow. They were closed today... (which they should have been!)
0