GRRRRRRRRR I HATE LE..........
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tsoebbin - thanks! I'm off to order it on Amazon. For 3.99 it's worth a try!
For anyone here who may have the FlexiTouch machine: I had to return mine as it was too aggressive and did nothing for truncal (back area in particular). I do have the size 1 short garment - top right side w/arm and the bottom with thigh wrap which were not able to be returned. I used them over clothes about 4 or 5 times if anyone can use a new set. I would gladly donate them
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I typically wear mine without my knitted knockers, but I did give them a try one day and they seem to stay in place. 💞 No pockets but the upper and lower band seem to keep them secure.
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wholenewworld. Try wearing your compression tees etc inside out so seams don't bother you. Yikes your sure having problems. Some of us wear our under armour tees inside out to the beach! When someone mentions that, just say " that's right "and stare right back at them.
For anyone that is getting rubbing in their inner arms like me. I use glide product. Anti friction stick same as the marathon runners use. Works great.
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hugz4u - I wear all my T's inside out except for wearease t and slimmer - although even the slimmer has rough seams under arm (to me anyway). I stilll feel the seams Inside out but not as bad. Its just a constant rotation throughout the day.
Its a process I guess!
Thanks
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hugz4u - thanks. I wear all my UA and GO T inside out. Only the Wearease are on the right way but I find the slimmer still is scratchy under my arms. I might try that glide under the arms where the shirts hit if it is ok to use for any area of the body.
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wholeneworld. Yes Glide product can be used anywhere there is chaffing. I even used it on the back of my heel where my shoe rubbed to avoid blister. It made my day! I have a tiny sample size I carry in purse for everything. I bought this size at sports store. A running store may have it in all sizes.
Iam very skin sensitive and can't live without Glide. I phoned company and they said it won't harm garments. Alternately my mld therapist gave me some small silicon sheets that people use for scar repair. It worked great for my sensitive inner elbows to! Takes up no room in suitcase. Try before you fly.
Binney my mld therapist uses scar sheeting as a anti chaf behind her knees for her leg compression. I tried as I said aboveand the sheet is inexpensive and lasted the full week I used it. I saved the backing plastic it came on and when I removed sheet which I cut to desired size I stored it back on the plastic backing. I could see this being used in hot climate such as yours.
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I have now been on the LE diet ( gluten-free and anti-inflammatory) for six months and recently had all my blood work done again. Observations - my LE has definitely gone down. Also, it cured my stomach issues, dropped my borderline cholesterol 40 points and increased my thyroid production for the first time in years. I wish I could say that the nerve pain was gone. I now know that is due to a different issue which will require more surgery this summer. Hopefully the Truncal LE doesn't come roaring back. Grrrr, I hate LE.
Scottie
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I like the Franato shapewear cami. Comes up pretty high in back and under arms and wide straps and not expensive. Also less compression over hips so doesnt ride up at bottom.
https://www.amazon.com/Franato-Womens-Shapewear-Co...
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There used to be a store that sold only one shoe out of a pair, often donated by amputees or those with unevenly-sized feet. Maybe the same thing with gloves or mittens?
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kareenie - Does the Franato Cami give support on top? Is it really firm control on stomach?
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Hugz - my goodness there are lots of choices on the Body Glide site. Have you tried several? Whilch one do you regularly use?
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I found a source for oversize gloves, a military surplus store in wichita. they have large mittens for use over gloves. even have a trigger finger sticking out. i bought a apir and gave one to my son.
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minustwo. Oh dear your right, so many choices. Never been on their site before. I use the bright blue one. I also used the pink foot one for blisters and inner elbows. But now I see the yellow cycling one and read the good review and that one looks like it would never wear off if you were doing heavy sports with a lot of elbow action.
It goes a long way and well worth dollars
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Hi everyone
I need some help and support, My story is a little different which it's what makes me so mad. In Aug of 2015 after an abnormal mammogram. I had a core needle biopsy which showed adh. I had a lumpectomy and came back b9 no adh or cancer. I've been checked every 6 months since. Nov 2016 i discovered swollen auxillary lymph nodes. I had a core needle biopsy for that too. Came back b9 reavtive but my surgeon wanted to make sure it was not lymphoma. He was only suppose to remove one node but instead he took three. I was so upset i could not understand why. Which brings me here im 7 weeks today post op My breast on the surgery side is large it has been always smaller becsuse of the lumpectomy. I have been going to a therapist for arm lymphedema which is pretty much normal now. I got my period saturday night and i started seeing the swelling id say thursday before my period. I'm wondering if this is lymphedema or could it be hormonal. Im so depressed all i can do is cry. My husband doesn't unnderstand and i need to talk to someone that can help me understsnd what is going on. what symptoms should i be looking for besides swelling? does breast lymphedema always mean trunkal can someone explain this to me. I'm sorry if I'm not suppose to be here but I couldnt find any other active forum. I have been reading google and its awful. Does any one here have breast lymphedema.
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I am sorry you're here, but I have to say that Google scared the heck out of me too!
I'm not the pro here, but want you to know you're in the right place for honest and thoughtful support.
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Thank you tsoebbin i feel like such a cry baby, but im so scared I dont know what to do. I live in a small town and been on the waiting list to see a lymphedema therapist. Where is your lymphedema? Can you tell me a little bit about it.
Thanks
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Tinkerbell, goodness, NOT A CRYBABY! We all sure do understand the frustration, fear and grief of trying to deal with this stupid lymphedema. Just know, it really does get easier--honest!
I have truncal lymphedema, as do many of the women here, so you're definitely in the right place to be looking for answers and support. Here's information about breast/truncal lymphedema:
http://www.stepup-speakout.org/breast_chest_trunck...
If you're asking if breast lymphedema is the same thing as truncal lymphedema, I'd say truncal can refer to lymphedema anywhere in the chest or back. Breast lymphedema is a kind of truncal lymphedema, but doesn't mean the swelling is anywhere except the breast. For me, my axilla and areas on my back swell as well.
As for other symptoms to be looking for, truncal lymphedema is frequently (though not always) painful, or even just achy. The pain can seem to move around and be hard to pinpoint, and it usually doesn't respond well to pain meds. What it DOES respond to is Manual Lymph Drainage (lymphedema massage), followed by some gentle compression. Another possible symptom is skin changes, particularly a roughening, but most women never experience that. You do want to be aware, though of symptoms to watch for that could be signs of infection, which is a risk with lymphedema. Here's information about that:
http://www.stepup-speakout.org/Emergencies_and_Med...
The emotional element of lymphedema is a problem we've all faced. Here's an article that has helped many of us deal with it:
http://www.stepup-speakout.org/patoconnorcopng.htm
I'm happy to say all this is manageable with initial help from a lymphedema therapist and finding the right kind of compression bra, cami, binder or t-shirt. All of this takes time, and that can sure be frustrating. Hang in there! And please do feel free to ask away--lots of supportive gals here happy to help.
Gentle hugs,
Binney0 -
Thank you Binney4 I read through it and yes a lot of emotions. I just hope it gets better because right now im pretty depressed, angry, Sad and crying alot. I've always been very optimistic and a happy person, i feel as if another person has entered my body. Sorry for ranting on.
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Tinkerbell... I was an emotional wreck when I first got LE, but I've come such a long way with physical therapy. When lymphedema specialist had me wearing sleeves anytime I was using my arms and taught me to do the manual lymph drainage right away. I'm really really really doing well now. I'm wearing a bandeau tight bra just around my chest and back and sleeves only when I need them.
But also using kinesio tape on my back area. Takes some understanding on how to use it but if your therapist can train you how to use it it's amazing.
I was so afraid. Of infection, of bites, even afraid of leaving the house! I feel like I'm much better now, I have a better understanding of how to manage it.
Look for YouTube videos on manual lymph drainage comma and please go to the links that Binny directed you to. They're full of the right information, not miss information.
Hopefully you'll be feeling more confident very soon.
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Tinker, it does get better. I just follow my limitations and try to live as close to normal. What's normal anyway these days! Anything flys today!
Yup you need to cry because that is the grieving process.
Helpful hint today everyone, I mentioned on kick butt thread.
Sometimes when I cook I put a cheap thin cotton glove over my le glove then a plastic medical exam glove over so I can get hands wet.
The cotton glove absorbs the sweat produced by the plastic glove and keeps le glove from getting sweaty and stinky like sweaty hockey gear. You know that gamey smell our kids bring home from gym! Bulky but works good enough to cut vegs.
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Hi ladies i want to say thank you to the responses. Today i saw my mo and of course i showed her my breast and i explained that was once my small breast she said there was not much difference between the two breast. I just had finished telling her that was the smaller breast. wow!!! it's been swollen now since about Thursday night she said since i got my period i had extra water retention and since i had a lumpectomy its slower to drain. Never did she mention lymphedema. I had to ask and she never gave me a straight yes. im so sad about all this. I dont have pain I've read here that itd very painful. My arm measurements are stable and back to being smaller then the right arm. now i have yo deal with mu breast it doesn't seem to go down. I had 3 auxillary nodes removed you would think all the others left behind would do the work. For all the ladies that had mild lymphedema how long did it take it to progress? I have been seeing a therapist since 4 weeks post op im still on the waiting list for the lana certified lymphedema therapist. could my mo be correct or is this deffinatley lymphedema with no pain. I have mild shoulder pain buy i had on and of pain before surgery. Can some please shine some light on this i think im going thru the denial stage and at the same time my eyes are always full of tears and my heart is sinking. For the ladies with breast lymphedema did you have any other signs other than swelling.
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After Arm Le for aprox five yrs I started to get a feeling like a hard boiled egg at the back of armpit. That was start of truncal. Over the last apron two years I would get a bee stingy breast, extremely light pain wise with very little swelling. That's all. Both trunk and breast very mild
Everyone is different hard to compare on progression but you can gather stories and see if you fit a profile. I was stupid and burnt my hand bad also later got sunburn and I think that is what started my le. I was about 30 lb overweight to. Not good.
I find if I sit on a chair with my back pressed up against the chair it stops the flow after say 15-half hour. Those tai chi breathers corrects it sometimes.
Your mo might be ignorant to le and so shoved the subject to the side. Your Lana therapist should confirm what's going on. Hang in there. We are here for you. This is a good place for support.
Try a compression tee one size to small and wear it. Try wearing to bed and see if you wake up smaller or try wearing it only in day or 24/7. Le is steep learning curve but we will figure it out.
Regarding nodes out. If you even get one out it's trouble. Like indoor plumbing, if you saw a piece of pipe out there is no connection for the water to flow thru.You get overspillage. That is our lymph system. Faulty plumbing.
Knowledge is power and dear one you are doing just that. Empowering yourself here is the first step.
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I only have breast & truncal, which the RO diagnosed after rads. I work diligently to keep it from progressing down my arm. Although I have had some mild swelling in one arm off & on, so far I think I've been ahead of the game for almost 3 years. I rarely have pain. I wear a compression bra 24/7. I do MLD regularly, wear sleeves for repetitive activity & flying and am vigilant about mosquito bites or pricks from rose thorns. I check in with my LE/PT when i do get swelling. And of course I don't let anyone do sticks for blood draws. Hope you get into a certified therapist soon.
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Has anyone heard of Low Level Laser therapy? A local PT and Lymphedema specialist advertises it on her website. Scroll to the bottom of the page:
http://www.lymphrehab.com/treatment-services-offered0 -
HomeMom - I have an appointment with my LE/PT on Friday and I'll ask her. She is at MD Anderson so they usually are aware of the latest treatments.
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Thanks Minus - I'll watch for your reply
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Homemom.I do know that my le therapist bought one to use on herself and said it can be used for Le. Not sure either if it's low level lazer, cold lazer or if it means the same thing. I know I get what might be cold lazer on my tendinitis wrists and it's so phenomenal for my inflammation. In fact I was strongly considering to buy one as i am always injuring something. I hear it's very user friendly
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I had no pain from LE (arm). I did get a sort of pulling “catching” sting in my forearm from cording, about 2 mos. after surgery (and it “popped”), but no swelling until I found myself up in a mountainous area of Sicily a month after that and my upper arm began feeling “tight” until the tour bus had descended a little. I also got some finger swelling (ring was tight) on my flight home from Spain, but that was due to salty food and a gauntlet that was too short and didn’t cover the knuckles just below the fingers. So my LE therapist (with whom I made an appointment before my cording popped) said that although he wouldn’t have advised compression in-flight for someone with “only” 4 nodes removed, because I reported symptoms he would diagnose me as LE Stage 0 so Medicare could pay for therapy sessions. When I’m getting anything resembling a “flare,” it’s either a bit of tingling or squeezy feeling or my ring gets tight. (The latter, especially during drastic drops in barometric pressure, like during the storms we’re having now or when I took an express elevator to the top of a 96-floor skyscraper for a holiday brunch, without even thinking to don compression). I don’t get any pitting, and my measurements hadn’t increased, so I am “in remission.” But I still take precautions.
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Homemom and Minus. Yes I found out cold lazer and low lazer is same thing.
The machine I want is at pulselazerelief.com. From Australia. Just emailed to see how much shipping is and if there is a distributor here and repair place here to fix if it breaks down. Although they have two year warranty the cost of sending from Canada may not be worth it.
I just payed 75 dollars for 15 minutes ultrasound with 15 min cold lazer. Was going twice a week for close to two months so I know this lazer will pay off in the end. It's about 600 auzzie dollars.
My therapist did the research and said it's a good one because of the way it works. I can't explain but it's not like all other home units.
I have no idea how to use for LE. At this point I need for injuries.
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for me, here is no "under control". after a good squeeze session with the rags, my left hand is at least 3 times larger. I now have to wear my watch on the right side, after getting a larger band. my wife calls it my "lobster claw'. out in public, people do notice it. my fingers are spaced different than when I learned to type, so lots of autocorrect.
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