HOW DO YOU FEEL ABOUT COMPRESSION?

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  • brazos58
    brazos58 Member Posts: 261
    edited July 2012

    Binney...

    This is my first summer wearing a serratus jovi pak on the right and left, then a compression bra, then a compression heat gear under armor short sleeve shirt, then a compression sleeve and glove.... and have been advised to toss my foobs on to add additional chest wall compression. Today its in the 9o's and I have had moments of feeling like a baked hot potatoe in FOIL.

    I don't like it. I can't wait till I can jump out of it each evening. I pray I can hang in there.

    I really miss just wearing short sleeve shirts and feeling free. Sometimes I like you do not like all this tightness around me. Then my mentalpause hot flash's chime along. AARRGGGAAHHH.

    Ok I am still here. Ok its just truncal LE and not my hand and arm so much. Ok its taking forever to make this adjustment to this is how life is.

    Blessings and Strength to you All

    xo

  • kira66715
    kira66715 Member Posts: 4,681
    edited July 2012

    Brazos:

    Ok its taking forever to make this adjustment to this is how life is.

    You nailed it. Not sure why it's such an on-going process, but it sure is.

    We are still here, but different.

    Hugs and solidarity.

    Kira

  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2012

    When it's hot the sleeve sucks. When it's not I have gotten used to the feeling, but not the appearance.

    I'll be honest, I spend a lot of psychic energy feeling bad about this, it is much much worse in the summer.

    I hate the feel and shape of the compression bra. I have nice breasts, it makes me look older, frumpier, and it's uncomfortable. Ok for jogging tho.

  • hugz4u
    hugz4u Member Posts: 2,781
    edited July 2012

    I CAN'T STAND ANYTHING RESTRICTING MEYell.

    Now that I am in shapers/sleeves and gloves I won't even consider putting on earings/necklace or a braclet unless I am feeling perky during special events. With all the LE gear I feel that adding jewelery just conscricts me even more.  Did I mention I am a barefoot type of a gal. I throw off the shoes at the office and walk to the photocopier in socks or barefeet in the summer. I just want to be free of all this garment constriction.Cry When I take them off, I say "At last!"Smile and then rub my arms to get the freedom feeling back. I have always hated constriction.

    That said, I do like to snuggle under my blankets when it is cold.  Don't ask me to wear tight nylons with all the LE gear cause I might choose to jump off the Golden Gate bridge! I don't know how you girls do it with all the  night vests/night sleeves and Leg compression! You all deserve medals!

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited July 2012

    I will be getting my first compression sleeve soon ( I finally got dx with mild LE after knowing for a year). My LE therapist has not said anything about compression for my truncal LE. I have only had one appt. so far. 

    She said I should rest my arm when I feel achey, heavy and one other thing I can't remember. But I feel it almost all the time. My other doctors are on me to lose weight. I can't sit in my recliner all the time.. Sometimes things need to be done around teh house. I am on disability so I have more time to rest than if I worked but still...there is only so much cupboard space for dirty dishes....eventually weeds have to be picked in the garden etc etc. My partner is wonderful and helps me out as much as he can, but he is working soooo much now that his days and hours increased.

    thanks for being here and listening. 

  • etherize
    etherize Member Posts: 423
    edited July 2012

    What bothers me about the compression sleeve/gauntlet or glove is that it feels SO unnatural.  It just feels wrong, somehow.  I guess it's because we're used to our clothes fitting a certain way, and the sleeve is so bleeping tight.  

    I don't like feeling my clothes rubbing on me, etc.  I always wear my cuffs unbuttoned.  But other things can be tight, like my watchband (now worn on the unaffected side), or my belt. 

  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2012

    Cinnamon, you also need to stay REALLY well hydrated and do some deep abdominal breathing from time to time. Both can help get the lymph flowing.

    If your therapist says you don't need a Therapy Intensive (Manual Lymph Drainage and wrapping daily for a couple of weeks), then once you get properly-fitting garments you can definitely begin some stretching and exercise. You'll want to learn how to do self-MLD, for sure, so you can do it daily to help you relief the achiness and heaviness. So don't let her release you until you're comfortable with your self-care!

    Gentle hugs,
    Binney

  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2012

    Well I only where a sleeve and gauntlet part time - but it is way too much for me. When I am done with work or if it gets hot - It comes off. I usually end up putting it back on because it does make my arm feel better...

    I always have to have at least one foot out of the covers and any baby pictures of me, that I have seen, I don't have a blanket on... Now, I was born in August - hence - no blankets. Ther are times I think I want to snuggle, then I change my mind and throw off the covers... Oh and no socks to bed either.

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited July 2012

    GRRR...I just finished typing out my message here and my screen jumped and lost it all!!

    I have truncal LE as well. But due to my severe PMPS, I don't see wearing anything that would possibly irritate it an option. A bra is certainly out. I don't know much about LE and all its treatments yet, but some wrap around  my chest might sound better.

    I found out thru Binney that Medicare doesn't pay for LE sleeves. I also read on here that some insurances don't cover it. Congress needs to get their heads out of their asses and put forth a bill that mandates coverage of LE sleeves! It could save money in the long run!!!!

    Binney said something to me about some entity (I think congress) being pressured to make them covered. Could someone that has information about that send me a private message. I think we all need to pressure our representatives!!!

    Medicare and insurance covers thing that are not medically necessary like breast reconstruction, mastectomy bras, breast prothetics, etc. Now don't think I am saying that they shouldn't  be covered!! I 100% think they should be. I am just pointing out the irony in LE garments NOT being treated but should be.

    Anyway, after Binneys comments, I am not to sure about this LE therapist I found. But at least she is treating me. Not like the last one who treated me for it in the last 5-10 minutes of my LAST therapy session for PMPS last summer.

    Please private message on how I can help pressure to get LE garments approved for insurance!!! I may not find it in the regular discussion boards.

    Thanks. 

  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2012

    Cinnamonsmiles, here's the website for the Lymphedema Diagnosis and Treatment Cost Saving Act:
    http://lymphedematreatmentact.org/

    Be well!
    Binney

  • lionessdoe
    lionessdoe Member Posts: 780
    edited July 2012

    My whole upper left quadrant is in constant pain. My skin burns all the time. Compression is very painful.

  • FireKracker
    FireKracker Member Posts: 8,046
    edited July 2012

    I have always worn a bra to sleep along with tight undies for comfort.

    The post sergical bra that I had to sleep in and wear 24/7 never was that bad.

    I would love to buy a compression tank over the counter.Does anyone know where to get them?

    I have trunal LE along with a swollen breast.

    Goin to start with #3 PT next month.

    Original question I  like the compression feeling.Makes me feel like I am doing something right.

  • dassi52
    dassi52 Member Posts: 206
    edited October 2012

    I still don't have a glove so it's bandages for me most of the day and the whole night. I love taking them off to feel some real air on my hand and get it wet. Yet, when I put the bandages on again, I feel relief because I feel they give support. It's really weird how dependent I have become on bandages. (within 2 months!) Yes, I would love to be able to go without, but my hand starts swelling after a while. I found it hardest to get used to the wrap at night. As I am typing, I am thinking how I would love to air my hand a little, but then I hate all this time wasted on the wrapping process, so I guess I will suffer the discomfort.

    I tried a glove twice (no good because of a problem in my hand) but while a glove looks a lot more streamlined than all those bandages, it was so tight. The first time I tried one on, I thought How the heck am I going to be able to get my hand in that little thing! Bottomline - as long as the compression doesn't hurt and does the job (giving relief and reducing swelling) you can get used to anything. That doesn't mean I like it!

  • Lee7
    Lee7 Member Posts: 657
    edited October 2012

    How do I feel about it? Not very good.  I really hate my sleeve (and any bras now).  BUT I know I have to have a sleeve because if I don't wear something the swelling gets worse.  I find myself pulling it off and putting it back on multiple times a day because my arm aches so much.  Wrapping makes it hurt even worse, but maybe I'm making it too tight? I don't know.  My arm is bigger now than a year ago,  especially at my elbow.   Ugh.    I wish compression would work for me.

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited October 2012

    I am just wearing my sleeve for weight lifting so far...I hate it...It feels so tight  & uncomfortible Even though it isnt probably that bad...it is the correct size. 

     I hate anything on my feet...Especially Socks & Tennis shoes!   ...If it was warmer here I would live in flip flops year round...You see my feet are Claustrophobic! 

    I do not like long sleeve tops...Id also like to live in tank tops year round...I dont like layers of clothes...I dont see how people can layer clothes- its so constricting...

    Id prefer to skip a jacket even when it is freezing out.

    Put me in a zipped up sleeping bag-  Ugh- get me out of there!

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