So how exactly do I compress this?

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cookiegal
cookiegal Member Posts: 3,296
edited June 2014 in Lymphedema

So I was tired and stressed out Saturday night and fell asleep with my underwire bra on...when I woke I had a big bubble of fluid on my shoulder. I wish it wasn't, but a blister of fluid was exactly how my LE first presented. I have also been wearing shaper tanks since I put on a few extra pounds the last month, though not that night.

I know people wear armorall and stuff, but I have such skinny lower arms almost nothing fits. A very WIDE strap tank might almost do it.

I am almost afraid to wear a sleeve since the bubble is above it and it doesn't seem like a great idea to shove more fluid there. I normally wear a belisse, but again, is it just pushing fluid the wrong way? 

ARGH...I need to get to an LE this week....and I might even consider trying the neuralprolo again since it did help the bubble on my arm go away for a long time. I am thinking there must be some sort of sleeve that might work.

It's also just outside the range of the lymphedema sleeve company bi-lat band.

My last and best option might be Kineseo tape.

SIGH. I am so not into this. The bubble did go down but that is just how my LE originally started.

I have had a pretty easy go of it the past year...BLAH!!!

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

    Cookie, I wonder if my Juzo over- the- shoulder, held by a cross strap would give some compression to the top of the shoulder. It has no circular arm band. It is much like the lymphedema sleeve company sleeve that you have but not bilateral.

    I just felt under the shoulder area and it does compress a bit. The top of the sleeve caps the shoulder. It is around 60 dolllars from brightlife.

    Oh Cookie, It just stinks doesn't it!

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

    Cookie, do you have any Swell Spots that would work for that area? Perhaps under a sports shirt at night, say. They're bulky to use during the day if you have to be presentable, but at home evenings and through the night it could give you some real relief.

    The LymphedemaSleeveCompany bilateral that I tried exascerbated that area, since it tends to hold the fluid forward over the top of the shoulder and not allow it to move downward on the back. I kind of doubt wearing a sleeve would make it worse, unless the top of the sleeve was too tight. You could try it for an hour or two and see. Sometimes getting the fluid moving anywhere helps the rest of the quadrant.

    Do keep us posted--really sorry for this crummy development!Frown

    Gentle hugs,
    Binney

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

    Hey swell spots is a great idea. Now why didn't I think of that. Brightlife has all kinds and if they don't have one you prefer then phone them and ask if they can get a specific one ordered in.  I don't think they show all the options that are available from the suppliers.  One girl that works there even puts one behind her knee where a Bakers cyst is.  People are using them for all kinds of swelling issues. I bet they would even help swollen ankles.

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited January 2013

    Tell me more about swell spots!

    If your going in for LE T anyway, kinesio tape would probably work really well, my LE-T uses it, and I find it very beneficial.  Wish I could do it at home sometimes.

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

    It is just inside my shoulder above my armpit.

    The shoulder juzo sounds like a great idea, but again I need custom.

    Are swell spots the ripple foam. I have a big slice of it. I can try the "boobie wiggles up there too.

    I just hate the idea I have another front to deal with all the time in a more visable spot.

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

    Swell spots, I think are made by Solaris but I am not 100% sure. Jovi makes them ,they are more streamlined and thinner. They are made with chip foam and have stitching going with the direction of your lymph flow. They work wonders on my truncal. I slip a swell spot which is about a foot long and covers my breast into a shaper at night and in the morning my swelling is down. Then I wear a shaper to work and repeat the nightly duty again. swell spots are not overly expensive compared to what they can do. 20 dollars - 60 aprox.



    Cookie do try the foam piece you have.



    Don't make my mistake and try to remove the k tape. It has to fall off otherwise you will get a burn like scrap over the entire area you removed. My area swelled because of the scrape. I had to watch it like a hawk fir a week. Just cut it off as it peels off.



    Do you actually wear a wire bra and don't swell around the trunk? How fortunate. I wear ugly jogger type bras. Normal ones without wire make me swell.

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

    Cookie, Are the booby wiggles big enough to fit in? Do you still swear by them. Is it the bilateral wave sleeve that you cut. I wonder if I should buy one and stick the material in my shaper.

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited January 2013

    So the swell spots must be like the JoviPak I have that looks like angel wings and wraps around from my sternum to my spine, wear it under a sports bra at night, only smaller?  That think works wonders for me when my truncal is acting up!

    Hugz - my LE-T said that some people are allergic to the adhesive in kinesio tape, could that have been you?  Also, I did find if I just ripped it off - YIKES!!!! Glad it didn't bother my LE, like you had happen.

    Thanks for the info.

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

    I wear underwire bras a portion of everyday. For what it's worth, sometimes they take down the swelling, I think, because at least the breast is in something firm. Honestly the band on a non underwire bra seems much more constricting to me since it is straight across and at least the underwire curves.

    I have a bunch of soft stretch bras from sears that have a decent neckline to them, but they don't really help much. For someone else it would be a great bra though!

    I have a limit on how long I can wear them, I used to sometimes even switch out during the work day.

    I still swear by the boobie wiggles, which is the fabric from the abdominal band, not the sleeve. Honestly I always use them with the belisse, it really doesnt do much without them. I even have thrown them inside a underwire.

    I wish I could illustrate how tricky the new spot is, y'know how it's hard to have a band-aid on a knuckle...it's sort of the same problem. Again the amount of swelling I have now is managable, but the thought of having out of control truncal beyond my breast is not a good one.

    Thanks for all the advice.

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

    Cookie, "Swell Spot" is actually Solaris' name for these things--Jovi calls theirs "Jovi Multi-purpose Pads". The proper term for all of them is actually "chip bag," which refers to the foam chips inside them. Some therapists make them themselves, as it's not rocket science. Jovi also offers pit bags, or "Pit Pads" that are filled with cherry pits (I am not making this up)--but in this case you don't want a pit bag because they're very aggressive and you really need some supervision from your therapist if you use them.

    JoviPak is the company that makes "swell spots" that fit in the Bellisse (but of course they make others as well). Solaris makes a wide variety as well. As Hugz says, Solaris chip bags are thicker, but I find them much more effective, so this is an individual thing (sigh!Undecided).

    The over-shoulder piece on a day sleeve that is held up that way is not designed to be compressive, and it might actually constrict flow in the area you're talking about, so be sure if you order one you return it promptly if it doesn't work for you.

    Ripple foam might help--try it. I use stockinette over ripple foam so my skin doesn't react, but maybe you're a sturdier sort than I am. Do try the boobie wiggles too. Whatever works. I'm so sorry you're having to deal with this. Whack a mole!FrownTongue Out Let us know what you discover.

    Be well,
    Binney

    Edited to add: my favorite item for difficulties like you're describing is a hunk of "chocolate bar" foam, which is also a bit more aggressive, but not as aggressive as a pit bag (or you could try "spaghetti" foam too, which is not as aggressive as chocolate bar foam). I use stockinette over that as well (you don't need it with spaghetti foam because it has a built-in cover) and find it comfortable, easy to keep in place, and not puffy like a chip bag. The chocolate bar and spaghetti foam comes in a big sheet and it's expensive (zowie!Surprised), but a single sheet will last you a lifetime. Or ask your therapist if she'll give you a sample to try. Just a thought.

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