GRRRRRRRRR I HATE LE..........
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Minustwo- you knew exactly what I was worried about! I got out of the pool and went straight inside and followed the same cleaning routine that you did. I didn't flexitouch pump last night. LE is so annoying!! I had both arms in the water doing laps why did it have to be THAT arm???I do have antibiotics and I want to use them with caution. I need them to work when I really need them!!
I know you were being very careful with the picture frame and I hate that you got poked!!! I am so thankful for the experienced ladies on this thread. I am slowly becoming one myself.....damn LE!
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Varga - how's your arm?
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MinusTwo- I still have a little.red raised spot. I have kept it clean and havent scratched it al all. Which was hard at times! How are you injuries from the picture frame healing? Thanks for checking on me
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Joanne-i just saw that After Bite at Walmart yesterday! I stopped for a mintue and looked at it but didn't get it. Thank you for sharing! I will definitely pick some up next time I'm at the store. I have always had bad reactions to any bite. I'm so sensitive and so is my youngest grandson. I am to the paranoid state of mine as well... everytime I go outside I'm on HIGH ALERT!!!
I'm sorry to hear your arm is still having signs of damage from the fly bite. LE is life altering!
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Varga good news. Yes it's sooooo hard not to scratch. My skin is now just patchy & scaly where the punctures were but fortunately the swelling is gone.
JoAnne - I do remember. Thanks for the update. We all become paranoid don't we.
AFTER BITE is wonderful. I used it when my son was young and the Scouts always took it on camping trips. Smells like ammonia but it sure does keep a bite from itching. I didn't use it this time because I had an open wound and I wasn't sure.
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Question...does anyone sleep in a night garment?
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Sorry - not me. I do sleep in a compression bra that I wear 24/7, but it's not nearly as confining. Link attached - and no I don't have any interest in the company, though I wish I did.
https://www.wearease.com/products/sydney-bra?varia...
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Varga, I used to sleep in nighttime garments on my arm and hand. Fortunately, my lymphedema has stabilized so I haven't worn them in months. I do wear a daytime sleeve when exercising or doing yardwork.
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I never have to worry about garments anymore because I can't afford them and can't fit into over the counter sleeves. Medicare doesn't think any of us are worth enough to cover them, only the therapy? I was supposed to have therapy 3 times a week for the next six weeks, but only found out that I would need to pay for all supplies and garments out of pocket when I went for my therapy yesterday. I cancelled all my appointments!
I have stage two lymphedema. Haven't worn garments for years but after my mastectomy this year it got worse. I thought I would try again per my MO's request, but I don't have the money and honestly never had any medical issue from the lymphedema other than the swelling. I'm fine with wearing long sleeves all year round to try to hide my large arm
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I just don't get that!!! I consider the sleeves and compression garments in the "preventive care" area..I'm so sorry that you have to deal with that. I will say that lymphedivas has a " seconds" area you can shop from and its much better prices. What makes them seconds are a dye lot difference or a seam bot lining up.
The reason I asked about the night garment was because I'm waking up so uncomfortable in mine. I went to the beach a few weeks ago and didn't want to haul all the garb down there so I slept in my Belize bra with the swell spot and my thicker compression sleeve. I slept so much better!!! Its not that I'm not sleeping. I sleep good and when I wake up comfortable and reposition I go right back to sleep. It's just waking up 2-3 times a night that's so annoying! I need to ask my OT about ditching the night garment and just sleeping in the bra and sleeve.
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Varga, my LE therapist did not approve of me sleeping in a daytime compression sleeve. She told me that it runs the risk of strangulating the arm. I completely understand not wanting to sleep in a hot, restrictive nighttime garment. Is it possible for you to ditch it during the summer months only?
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Ugh!!!! I just typed a long response and it disappeared before I could hit send!!! Sometimes I don't like technology!
Hersheykiss- I do not get hot at all. I freeze to the point that I still have an electric blanket on my bed. My arm wakes me up. It feels like its locked in place and is not free moving...like ratchet time movement instead of then gliding movement at the elbow. I have had this night garment for almost 2 years. I care for it exactly as I was told. Wash it every 1-2 weeks no fabric softener. I had it refitted a year ago because I lost weight. I just can't figure out why I'm waking up with my arm feeling heavy and locked. I have always slept on my right side which unfortunately is my LE side. I try to lay more on my belly and not put all my weight on the LE area. Last night I woke up at 12, 2, and 4. I repositioned at 12 and 2 and took the thing off at 4! Slept sound until my DH for out of bed around 7:30. Woke up without my arm hurting to. I just can't figure out what's going on..(all of a sudden)
I do have my original night sleeve (the puffy kind of quilted one with a cover) tonight maybe I should try that and my Sydney bra.
I appreciate all the responses! I feel like you ladies live it and know more about what I'm feeling that anyone else!
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Varga - just to note, my LE is breast & truncal. It has not progressed to my arm (yet). I only wear sleeve & gauntlet for flying or continuing repetitive activity. I do however wear the Sydney bra 24/7, including when I'm in the pool for water aerobics. Hope things settle down.
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MinusTwo-did you the Sydney is on sale this weekend?
I love this bra to! My LE is more in more truncal to. My arm isn't to bad. I'm sleeping in my Sydney bra and just the sleeve tonight!
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I did see the email Varga, but thanks for reminding me. 40% off is a GREAT deal.
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I got 2! I love these for when I don't have my swell spot on!
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Varga - I've use a swell spot with mine & it works OK.
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MinusTwo- do you use the one that wraps around your back? I havent tried to get that bulky thing in my Sydney bra. I'll have to try it!
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The only thing I use for breast & Truncal LE is the Sydney Bra. That and manual decompression. My LEPT really liked this bra because it is high in the back and under the arms. I just use a regular sleeve & gauntlet for flying.
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Hi Ladies,
I have had some swelling in my upper left arm that comes and goes - I manage it with MLD and sleeves - and see a Lymphedema PT monthly. Yesterday I felt some soreness in my forearm area that came out of nowhere but my arm looked normal so I put it out of my mind. Tonight I am panicky because I felt the soreness again and when i touch my forearm it is very tender - looks slighty swollen and the tenderness goes up my arm to my bicep. It is not red or even pink - same color as my other arm just the tenderness. I cant call my PT until morning - should I be concerned? I immediately put my solidea micro massage sleeve on which is what she recommended in the past. any advice is welcome! Thank you!
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ello, I am 8 years post diagnosis and have just developed Lymphedema. I have arm, underarm, and supraclavicular swelling. My dr has ordered a PET scan and referred me to a Lymphedema specialist. The waiting list is 1 year!
Can you tell me if it is unusual to develop Lymphedema 8 years out? Also, what’s most important for me to do while I wait for an appointment. I plan on looking somewhere that won’t take a year. Thank you!
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Mammalou - Yes, LE can appear at any time - even 20 years down the road. How discouraging that your docs didn't warn you initially AND that you have to wait a year. I do think you should pursue something sooner, since LE can only progress & get worse if you're not treating and controlling it.
Here is the link with ideas and doc recommendations that may help in the interim.
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Our BC support group at church had a lymphedema specialist speak to us about lymphedema. We were surprised too that it can develop at any time. We all thought it happenedimmediately but apparently that’s not the case.
Diane
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Thank you for the resource!
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JO - great post.
mammolou - I should add.. After my BMX my surgeon and my plastic surgeon AND my oncologist all said pooh-pooh, no way, never happens. "But if you're freaking out, you can go check at 'this place'." I found a doc on my own for a consultation who was the head of wound care at a major hospital and an expert on LE. Yes, of course I had mild involvement. And yes of course there were lots of things I needed to learn & watch out for (rose thorns, bug bites, sleeves when flying, etc). And he said absolutely DON'T go to "this place". I'm a firm believer that a trained person needs to teach & supervise you in the beginning, but Jo is correct that you can get techs & docs who don't really understand and can make it worse.
Down the road, the only one who really understood the entire issue was my radiation oncologist after ALND - and she recommended wonderful therapists.
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Thank you all for the resources and advice. I’m going to dig in and figure this out. I found another place my doc can refer me to so I’m getting on that. That will be my first step.
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My LE boob hurts. I have no idea why. Could it be just from the LE. It feels sore. Usually it just feels heavy. I dont have an appointment with my OT this week. I only have a few visits left for the year and I'm trying to space them out. If my boob were a clock the soreness is from 4-7. It's just a different feeling. It just started a few days ago. I hate not know when to act and when to not over react.....*sigh*
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You know what they say Varga - if you still have pain in 2 weeks, go to the doc. But of course that doesn't apply to an LE flare. I'm assuming the clock is when facing the body, so the pain is on the side towards the arm & not the middle of the body? I haven't experienced that kind of pain. Only pain that happens when I don't stretch my radiated chest & underarm muscles EVERY DAY. Hope someone else can jump in with an idea.
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The soreness is actually in the.middle. I should have said that to be clear. I have always had a problem with "pooling" in that area. DH just said to call the PT who is the best at LE. She doesnt take insurance. Its $60 a visit and shes well worth it of there's a problem. We are leaving for the beach on Saturday and I want to enjoy myself while there
On Sunday we rode over to Cherokee. Its about a 45 minutes from the house. We go through quite a few elevation changes and I forgot my sleeve. (Long story but I was around someone I dont want to know about my LE so I slipped it off and forgot to put it back on
)Thanks MinusTwo!
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Right now I'm running in my sleeve along with wearing a compression running shirt (it doesn't compress nearly like the sleeve, thankfully) and both of those make my runs so miserable in this hot, humid weather. My OT has been seeing me 1x a week, we both don't think this is truly proper LE but definitely in the neighborhood so I wear them and sweat like crazy.
Vargadoll I get self conscious wearing my sleeve at work (OT has me doing that also for 4-6 hours a day). And I opted for some cool looking sleeves but really I just don't want the attention, you know?
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