Is This What Your Pain Feels LIke with Trunctal Lymphedema

Pure
Pure Member Posts: 1,796
edited September 2014 in Lymphedema


I am a little scared about the intensity of the pain I feel. I wake up with no pain but then If I do something that triggers it like heat or exercise I get this burning horrible nerve like pain that leaves me screaming and crying..Its like child birth pain. Its horrific. I take advil or something and it goes away. Until the next time I tweak it. This area of fluid/sweeling is in my back. And it just sits there. Is this a normal type of pain with lymphadma? Is this what I should expect to live with for life?

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited September 2014

    That does not sound like the pain I have from truncal LE.  My pain is more like an ache, tenderness, hurts if anything puts pressure on it, but not a sharp shooting pain.  That sounds more like some kind of nerve pain.  Any chance you will be seeing one of your docs any time soon?

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  • glennie19
    glennie19 Member Posts: 6,398
    edited September 2014


    Like Jennie,, mine is more of an ache,, a feeling of heaviness.   Have not experienced a sharp pain. 

    How long have you had the sharp pain?  Do you have a rash in the area?  I'm thinking shingles here. Definitely think it is worth a trip to the doctor and get it checked out. 

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  • carol57
    carol57 Member Posts: 3,567
    edited September 2014

    Mine is an ache, heaviness, and often a bit of a burning sensation, but dull--never sharp and not enough to make me wince.  Pure, I hope you seek some answers, pronto.  This sounds horrible!

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  • aunt_paula
    aunt_paula Member Posts: 271
    edited September 2014

    Mine is achy and heavy, and when it's really bad kind of a pounding pain. From my (former) breast around to my shoulder blade, I sometimes have sharper pain which I've always just assumed had to do with pressure from the fluid there combined with bra/etc.

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  • Pure
    Pure Member Posts: 1,796
    edited September 2014

    Yes mine is heavyish, achy, but it burns and is right below the skin. Meaning if you touch the skin to the touch is hurts. Once the advil kicks in it's fine and it only happens when my back/ lymphademia swell up...

    I can't wear a bra or sports bra b-c it cuts of circulation.

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited September 2014

    when my LE hurst it is also a heaviness under my arm

    If I put my arm down I can feel the swelling

    I went to many PT and now I'm goin natural

    I use caster oil,then put corn starch over it

    Many ppl laugh and poo hoo about it

    But it works for me

    I also do daily stretches

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited September 2014

    AND

    The weather if it's humid does cause swelling and pain

    I can tell when it's gonna rain

    Where the lymph nodes were takin out is always sore

    Another gift I would like to give back

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  • Lojo
    Lojo Member Posts: 303
    edited September 2014

    Purs, I've been wondering about my back pain too and whether it's lymphedema or nerve pain. Mine feels like it's just below skin, and sometimes achy, but not really sharp and it moves around a bit. I had a SNB +rads, so I guess there's some risk of LE, but I also had a very VERY mild case of shingles about a year before my DX, and I'm trying to remember if it's similar pain. I had one bump then, and it went away with the antiviral meds. No obvious bumps now, but I know shingles can trigger nerve pain with no sores.

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  • Pure
    Pure Member Posts: 1,796
    edited September 2014

    Humm really? That's interesting. I read the symptoms of shingles and I do have the itchy, burning, numb feeling in a specific area of my back. I definitely have lymphedema but maybe shingles too?  The pain DOES move around as well. My other thought is that the fluid is hitting a nerve. ????? I actually live in Maui HI. Soooo it's pretty warm here year round. Last Saturday I went to the beach and got way way overheated... About an hour later the pain, throbbing, nerve pain started. My husbad had to take me home. In the car ride home I was screaming I was in so much pain.

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited September 2014

    Shingles is  very painful

    I had it before I got the beast

    When ur immune system is down u r so prone to it

    There is a shot now 

    Also shingles can come back many times

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  • Fitz33
    Fitz33 Member Posts: 243
    edited September 2014

    My LE started bothering me again a few months ago; prior to that it had "settled down" and I was hoping it would remain that way.  FireKracker:  my PT uses castor oil on my massage for LE.  I hate the smell of it and it gets on my clothes but I assume the reason for using it is that it gets deeper into the tissue.  Before castor oil she used to use Neutrogena light sesame oil, another scent I had a problem with.  I just use a body lotion for a self massage but can't seem to get this under control.  Like you, when I put my arm down I can feel it and any pain is always a dull pain.  Pure:  Yours definitely sounds like shingles but with the heat as intense as it is it could be LE.  I did have one time of it bothering me a lot with a deeper pain that eventually went away.  I have to see someone when that happens so they can try to massage me back to my normal.  

    My PT also said I've been wearing my bra too tight as the heat has made my trunk swell along with my arm and back.  Does anyone have any good chest/arm/side/back LE exercises?

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  • glennie19
    glennie19 Member Posts: 6,398
    edited September 2014


    Fitz, are you familiar with the Lebed Exercises?  

    Here's a link to her website:  http://www.gohealthysteps.com/

    There is a DVD that you can buy.  The opening exercises is what I usually do and it seems to help. A lot of the women on here use it.

    The opening exercises are on Youtube in individual segments.  I'm on my working computer and can't link to Youtube on it (silly restrictions!!)   but if you go to Youtube and search for  "Lebed Method Lymphatic Opening"  it will take you to the first part and then you can click on the other links and go thru it. It is important to do them in order.

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  • Pure
    Pure Member Posts: 1,796
    edited September 2014


    Thank you for those exercises.... I had no idea...

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited September 2014

    there is also exercises on the step up program on BCO.

    Check it out...,,,cause that works

    I wear a very lose bra and when I take it off if I see the bra mark I no it's not good

    I have my own routine that I do daily

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  • Fitz33
    Fitz33 Member Posts: 243
    edited September 2014

    Thanks glennie, I had done a few of the Ledbed before but got away from it and now I think I'll use that link again.  Hope it helps.  

    FireKracker, it's nt the cups that need to be loose but the band and that usually tightens on everybody during the day but when my lymephedema acts up it's tight to begin in the morning.  I even put on one of those bra extenders today , to the last point, and it's tight again.  ugh

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited September 2014

    I must have about 30 bras...really and I keep buying more

    I'm starting to wear a lose one,like a size bigger

    Sometimes I wear the tank with the bra inside,bigger size

    I slept with a bra all my life till I got the beast,then the LE so I wore a harness!then sports bras now I need it to be lose BUT if I swell up. bad back to the harness

    Grrrrr

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited September 2014

    Firecracker and everyone else. Please see the thread I bumped up on donating used garments and LE stuff to Haiti where people can't afford garments etc. Read one of the July 25 posts to see where to send your stuff.

    We all have tons of shapers , sleeves, wraps that we can't use anymore. Please help our fellow LE'rs who contract a terrible type of LE due to a certain mosquito bite.

    Let's help our world be a better place. Come on...we all have tons of this ill flitting stuff in our drawers just waiting for a better fitting person and cherished home.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited September 2014

    Regarding bras or anything tight around under your bust. This traps fluid and makes sore swelling. Wear a shaper with a shelf bra but make sure it is really loose or just a shaper with no bra.  My fav is bathing suit tankini like. it has a shelf bra and band is only in the front. 

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  • Fitz33
    Fitz33 Member Posts: 243
    edited September 2014

    My problem with a loose top is that I wear an insert and I don't think I can keep it in with a loose band.  I'm going to try it though and see how it works.  There doesn't seem to be a band big enough for me and then when I swell it starts to curl up and make things worse.  A pocket bra seems to be the best for me and I wear them as loose as I can but then by the end of the day it's tighter.  I'll keep trying your suggestions and thank you for them.

    Great idea about donating to Haiti and I'll keep that in mind with my garments.  

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited September 2014

    Oh yes I get the annoying band rolling up to. Drives me nuts. Just want to rip it off. I have wasted so much money trying to get the right band and when I do, I wear that shaper to death. 

    I am going to look into taking a bra sewing class one day when I am bored silly. They say it is super easy to do. I don't sew. Yikes, I hope its easy.

    If you put the insert between the shelf material and the shaper material they won't float out. They may eventually move to the outer side of the shelf bra but thats when I rearrange them when no one is looking. ugh.... I hate this stuff!

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited September 2014

    I would love to donate my bras cause I have so many

    But

    Believe it or not if I get any swelling I start tryin on all my bras cause I need it tight like compression

    Yes I have 2 of them and I have to pull them out every once in a while

    Then I graduate to the sports bra

    And on and on it just goes 

    I hate this disease that is so silent to the world

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