Does your truncal LE get worse in the Summer?

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in Lymphedema

Hi,

I had gotten my breast swellinf down to nothing with regualr massage and exersize and as soon as April came, I was swollen to as large as I had been before starting treatment.  IS this jsut coincidence or have oyu experienced a difference in the warmer weather?  I'd really appreicate eharing form peopel who have lived through at least one year of this and so can say whether weatcher changes swelling.

Thank you! 

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  • carol57
    carol57 Member Posts: 3,567
    edited June 2013

    Weather does on job on my LE! Storms (barometric changes) and heat both make it worse.  I feel like a personal weather station, because I swear my arm tells me hours ahead of when there's going to be a thunder storm.  You're not imagining this.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2013

    Oh, goodness, yes!!Frown Stay inside during the hottest parts of the day, carry a spritz bottle with you and spray yourself when you have to be out, wear a big hat to shade your body, enjoy the swimming pool--whatever it takes to stay cool.

    Even so, as Carol says, storms can also cause flares. Some of our gals who have been near tornadoes in the past have really suffered some strange LE reactions. Good news is, these resolve when the weather conditions improve!Smile

    As my LE therapist says when I ask her how best to care for my LE, "Move to Alaska."

    Sigh!
    Binney

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    Well, but let me ask: my experience is that once spring time came, I hada swollen breast just liek I did before my first treatment and nothing brigns the swelling down.  The massage/treatmetn does soften the portions that have ahrdened temporarily but as to deflating -nope.

    Has anyone experiened that?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    HVV, I agree with Carol and Binney... I most certainly feel a difference with temperature changes. In NZ we are in WInter, and Im stll experiencing swelling but Im not sure whats going on with me. My LEist says even the change of seasons can cause issues.

    Ugghh Binney move to Alaska?

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  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2013

    Absolutely worse in the summer.  Daytime temps are frequently in the 110 range where I live (near Palm Springs), and I have to get out and walk really early, plus I can't walk nearly as far as I do when temps are more moderate.  If I'm out in the heat even a little too long, I'll have prominent hand swelling immediately, and painful truncal swelling the next day.   

    I also don't sweat on my mx side, so the heat affects me quicker because of that, which not only exaccerbates the LE, it makes me get overheated very quickly.         

    Also be aware that some typical summer vacation activities, like a day at the beach, or hotel hot tubs, or even soaking in a bath tub, can contribute to or cause flares.     Deanna

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2013

    HVV, what kind of compression are you using? Compression bra? Cami? Sports bra? Switching around to find something that works better for you may be in order. Are you using any kind of compression at night? That can help too. Have you tried any swell spots, daytime or at night? Tell us what you've tried and I'm sure there will be plenty of gals with ideas of what worked for them. My own exerience is that nothing works all the time, and I have to switch around from time to time. Or as Kira's therapist says, you have to keep the nasty lymphedema guessing!Tongue Out

    Hugs
    Binney

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    "My own exerience is that nothing works all the time, and I have to switch around from time to time."

    +1

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    Hi Binney and All.  Thanks for your replies.  I am not using compression as I am very large chested and plus-sized and there are very, very few choices of compression garments in my size.  So I have one of the compression bras that zips up the front (that is supposed to be the best) that I think doesn't compress very much and bulges out of my clothese and makes me look like I have a thick flat front and I did purchase 2 compression tanks/camisoles that someone on this site recommended but they don't look like they'd hold up my boobs very well so I have't used them.  I am not familiar with swell spots and my lumpectomy left me with essentially the same shape breast but shorter when I am swollen it looks puffier on top than the other breast and gives me the double boob look that is so attractive as when you are wearing a bra that is too small.  Does that make sense?

    Any and all advice gratefully received!

    HVV

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  • carol57
    carol57 Member Posts: 3,567
    edited June 2013

    HVV, one thought is to see what you can find in swimwear, most of which is loaded with spandex. If you can find a shop that sells plus-size swimwear, you might have a lot of variety to try on that could double as a body suit?  Possibly remove underwires? If you sew, you might cut the crotch and insert a bra hook/eye piece, or have a seamstress do that for you, to make the thing more user friendly. Also, I know one woman who had swelling issues in her breast after lumpectomy until she got a partial prosthesis designed to give support where needed.

    It's so challenging to find what works. This is trial-and-error for most of us.

    Carol

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    Thank you!  Whay is a swell spot?

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  • carol57
    carol57 Member Posts: 3,567
    edited June 2013

    It's a contraption made of fabric and bumpy foam chips, sewn into furrows so that the finished item is bumpy but pliable, and we put them in our bras, under or camis, tucked into a compression shirt- places where there's stubborn swelling, and the added pressure and texture helps to scoot it out of there.  Look at Solaris.com; sorry I'm headed out the door or I would find you a specific link.  Some googling will find you places to buy them.  Like all LE products, they're spendy, unfortunately.

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited June 2013

    Does my truncal LE get worse in the summer?

    Yes, yes, yes, yes, and more yes.

    By the way, did I mention the answer is yes??  Yell

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited June 2013

    And don't even go there with me when you mention altitudes...such as driving in a car in the mountains on a hot day!

    Thanks goodness I live a comfy 300 feet above sea level.Smile Hum...I wonder what it would be like to have LE and live below sea level. Probably Heaven.... in disguise for us LErs...... It sure wouldn't be Hell for us LE girls.Laughing Maybe I need to get into hell then because it is below sea level.Tongue Out

    grrrrr. opps wrong thread! and sorry I am off topic. Just a bit cheeky here.

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited June 2013

    Altitude.....how does one solve this. If I go camping at 10,000 ft, do I remain in compression the whole time? Would I dare remove my compressing garments? Just wondering. I've never seen this addressed.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited June 2013

    Binney is the expert in heights, hope she weighs in. She does something while travelling up and down mountains. Maybe she does a night sleeve, not sure though.

    Myself, If I am in a car and go above 5000 ft quickly and haven't got out of the car to walk or fist pump or stretch during the elevation ride then I get an achy arm. I just grin and bare it. Within a half hour back down to lower elevation, say 3000 ft the achey stops. That is me, every one in different. Maybe a lighter compression would be better for me during the climbs, Haven't tried. Any ideas anyone?

    Yellowstone touring in the car was killer pain and I wanted to rip the sleeve off because you would go from 5000 ft to 10000 ft during your drive quickly (depending which part of the park you were touring.)

    I stayed at the 5000 ft level nightly and I was ok because I got accustomed.I popped the sleeve/glove on in morn and became accustomed, except for the quick elevation drives. I wore it for 8 hours and it seemed to work. That was a couple years ago. I may have changed. LE can be not predictable. I wear my le gear for 10-12 hours daily now.

    I may try yellowstone again but only say up to 6-7000 feet and see how I do. I can always see cool stuff at the 5000 ft level as there is lots of things to keep entertained there. Le is such a beast. I haven't had the guts to fly yet. Oh I wear shapers to while travelling.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited June 2013

    HVV...I am big breasted as well. DDD post reduction.

    I know some of the people here have heard me suggest it before but I use the fabric from a chopped up solidea abdonminal band on the LE side inside my belisse (which does nothing without it), and even inside a regular, well-fitting underwire bra.

    I have found that some bras make it worse, (the one I wear with my really good dress), but a high quality well fit underwire is ok, and I can even stick the fabric inside that. (It's not ideal, but even if I wear it in the car somewhere, I can pull it out.)

    It really seems beneficial when I used to jog.

    some of the other sportsbras do ok, but it is a LOT of trial and error. (Only really had one great one, I kind of buy a ton of them at Target and see what sticks)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    Very helpful; thank you!

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited June 2013

    My truncal LE gets worse in summer heat and humidity.  I did get a Solaris Tribute vest and attached sleeve to wear at night.  I have had since January.  I can tell it helps tremendously.  So far this summer has not been as bad.  When I take off in the mornings I see the lines down my trunk where the lymph flow moved.  I do wear a Bali compression top during the day (and arm sleeve/gauntlet).

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited June 2013

    I can tell the difference between when it is hot and humid. I have more problems then.

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