Anyone Ever Gotten Nauseous or Lightheaded From Sleeves

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woodstock99
woodstock99 Member Posts: 338
edited March 2016 in Lymphedema

I have 1st flight Friday and am still on the fence about wearing sleeves as I do not have LE and it's a 2 & 12/ flight. I did have my arms measured pre-op for baseline and quite a few times in past 2+ months and no change. My BS did not steer me in either direction but her office faxed prescription for me.

I have developed cording since my surgery and am seeing a PT where my BS is as well as a private therapist who is doing lymphatic drainage/massage. I ran into my 2nd choice BS last week and she said not needed for short flight.

When I went to the boutique to order my glove stye fitter there said to get Juzo but in 15-20 compression but said only sleeves no gloves or gauntlet needed.

My private therapist told me to wear them a couple of hours a day before my flight to get used to them like breaking in a new pair of shoes. So yesterday I put them them on as I was leaving for work and after about an hour I started feeling nauseous and lightheaded. I left them on a bit longer but then took them off.

The therapist is away teaching a class and I called the boutique to ask if anyone has every had that type of SE and they told me no.

I swear I was feeling fine before I put them on.

Anyone ever have or hear of this type of reaction? Could it be a reaction to the rubbery band at the top?

I am thinking of taking them with me but not wearing and doing all the other in-flight suggestions and I do have a few questions/

I have read to wear loose, comfortable clothing. Easy but what about bra? I am not doing recon and best I can manage to wear without too much discomfort are the genie bras, At night I wear a man's white cotton Hanes t-shirt. What is best for in flight?

Also would it help or hurt to wear compression socks o no relationship?

Thanks in advance,


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  • Meadow
    Meadow Member Posts: 2,007
    edited March 2016

    Balthus, I have not had that reacton to my sleeve, but I bet others have.I do not have LE yet, only slightly with summer heat or extreme upper body exertion,. but when I feel the need I do wear the sleeve and I did wear it flying. I recommend you fly with it, and take it off if you need to. Do you think it is too tight?

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  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2016

    Balthus, there have been times when I really needed to just rip off the compression or I was sure I would just pass out from the discomfort of it all. It takes some getting used to,,, even after all this time, there are days where after 10 hours or so,, I'm just DYING to get it off. (for me,, not so much the sleeve,, although I had to get used to it too,, it's the truncal compression that gets to me,, and it's so flippin' hot in the summer)

    It really takes some getting used to. If an hour was too much, you may have to break it in much slower,, like 20 mins,, but you are flying on Friday, so it doesn't seem doable for this trip.

    Wear Genie bra or whatever is most comfortable for you. Compression socks or stockings don't seem necessary, unless you are prone to DVT's, but again it is a short flight. Tap your toes,, tap your heels,, ankle rolls to keep the circulation going. walk the aisle. Drink lots of water, move your arms and all the other in-flight LE prevention suggestions that you have read about.

    Get a nice strong man to put your luggage in the overhead compartment for you. Rolling suitcase.

    Enjoy your trip! Keep us posted!!

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  • woodstock99
    woodstock99 Member Posts: 338
    edited March 2016

    @meadow I have had it checked for fit 2x and my measurements aren't even close to needing to go to next size so I don't think it is too small/tight.

    @glennie19 thanks for the suggestions. I kind of thought you had to wear it or not and I am more afraid of taking it off in flight. I will see what I decide in the morning. Like so much else with this disease it drives me crazy there are not always clear answers.

    I will have wifi so will report from the plane!

    Thanks.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited March 2016

    I never had much discomfort with sleeves (Juzo plain, LympheDivas patterned, both 20-30mm with silicone bands) or gauntlets--but the gloves are torture. Can’t type, cook or play an instrument with them on--even the half-finger ones are too stiff. My first post-lx flight was 8-1/2 hrs and I wore the Juzo sleeve and gauntlet--my bs’ nurse said never to wear just the sleeve--but on the return flight I noticed my ring felt tight. I mentioned this to the LE specialist at my first appt. (he said my measurements hadn’t changed) and he said when I fly I should wear a glove and not a gauntlet. (I love the look & feel of LympheDivas gloves, but I have freakishly small hands and short fingers, and their gloves extend past my fingertips). The only discomfort from the sleeve is if I wear it too long underneath a long-sleeved top--when I bend my elbow it feels like something’s sticking me in the crook of the elbow--probably a function of the compression.

    As to trunk compression, aside from a huge breast seroma I don’t seem to have developed breast or truncal LE--at least not acc. to my therapist. But I haven’t gone braless since before my biopsy--I wear a leisure or soft sports bra or shelf-bra camisole for sleeping, because the support feels better. During the day, most of my bras are underwire--at 40I, they should be.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2016

    Hi Balthus! Are you on the plane now? **waving** Hope you are comfortable and not nervous about the flight.

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  • woodstock99
    woodstock99 Member Posts: 338
    edited March 2016

    yes only about 45 minutes to go to West Palm airport I think. So far so good as far as I can tell. Had lots of water, doing what exercises I could in my seat and bathroom, pretty nervous but listening to good music, deep breathing and doing some of my mindful meditation exercises. Thanks for checking.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2016

    You are doing great. Keep up the hydration after you get off the plane too. And watch the luggage handling!

    Have fun in FL.

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  • woodstock99
    woodstock99 Member Posts: 338
    edited March 2016

    thank you! Nice change of scenery landing (I love the ocean) & heading to my mom's assisted living facility now. Hopefully equally uneventful flight back on Sunday. image

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  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2016

    thanks for the scenic view! Enjoy your visit!

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  • One_Bad_Boob
    One_Bad_Boob Member Posts: 40
    edited March 2016

    So I was fitted for a compression bra and sleeve. I've worn them exactly 3 hours now and I'm ready to cry. I'm not in pain but I am uncomfortable and I'm feeling emotional. I am having waves of lightheadedness and slight nausea but I assumed it was the Tamoxifen. Will be donating my VS bras. This was not discussed with me as part of my treatment plan but my RO referred me to physical therapy for lymphedema even though I wasn't having any issues. I do have to admit that the physical therapy is helping to loosen up my scar tissue in my breast and under arm area. The bra and sleeve are supposed to help with the continued post surgery and rads treatment healing. When I asked how long I need these I was told, "Let's just play this by ear". Just feeling frustrated over it all.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2016

    It takes a while to get used the wearing the compression. Do not be hard on yourself. If after 3 hours, you have had enough,,, can you take them off for a while? Wear for a little while later in the day or start again tomorrow? Totally understand your frustration. (((HUGS)))

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  • One_Bad_Boob
    One_Bad_Boob Member Posts: 40
    edited March 2016

    As soon as I read your post glennie19 I marched out to my car and got my old bra and took off the compression bra and sleeve. Ahhhhh... That was it. Feeling better already. I will ease into wearing it only a few hours a day.

    Thank you for confirming I wasn't going crazy :)

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  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2016

    oh, that feeling of taking the compression garments off,,,,, ahhhhhhhh,, nothing like it. You are definitely not going crazy. Believe me,, there are days now, when I'm just sooo happy to rip it all off.

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  • rainnyc
    rainnyc Member Posts: 1,289
    edited March 2016

    OneBabBoob, I'm with you. I've been wearing a glove for a few months (was wrapping when my skin broke down down under my arm from radiation, and I couldn't do anything about the LE in my arm until that healed). I just started wearing a sleeve a few weeks ago, and I'm all about taking it off when it gets to be too much. I think the maximum I've been able to tolerate is maybe 12 hours, but most days I haven't been able to get there. I have one glove that I can keep on most of the day, but the other one is much harder to wear, and I've only ever gotten a few hours before I have to take it off. Seeing the LE therapist tomorrow and am going to review all of this with her.

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  • One_Bad_Boob
    One_Bad_Boob Member Posts: 40
    edited March 2016

    Rainnyc: Thank you! I see my therapist on Tuesday and will bring it up to her. I will try again tomorrow with bra and sleeve.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited March 2016

    Going to wear my LympheDivas tattoo sleeve and long gauntlet on my flight today--if I notice finger tightness I’ll switch to my Medivan glove. A bit nervous about trying to don the sleeve over my elbow-scrape band-aid: hope it goes on smoothly and doesn’t knock the band-aid loose. The scrape still feels very tender--I can feel the friction when I try to turn over in bed.

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  • rainnyc
    rainnyc Member Posts: 1,289
    edited March 2016

    I did see the LE therapist yesterday. She took measurements and said that in just a few weeks of wearing the sleeve there is a significant reduction in swelling. Her attitude about how much to wear compression garments: "Of course we would all say that this is a lifetime condition, and you should be wearing them as much as possible. That said, you do what you can." Cautioned me again about not wearing the sleeve without a glove, but the reverse is fine. Said if the fingers of the glove are too long, take it to a tailor and cut off a centimeter or so, and just reinforce the fabric on the ends. Or I could do it myself. Exercise is fine, just build up gradually.

    So I came away thinking that I'll do what I can, and if there is a flare, I'll know what it feels like and can take steps. If no flare, I'm going to go back in 6 months and ask her to take measurements, just to see. It's around that time that I'm going to ask for a plastic surgery consult, and I want to make any decision about reconstruction with her in the loop.


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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited March 2016

    I might get the LympheDivas gloves in the Music City and Lotus Dragon Tattoo patterns after all--I could probably just do a running stitch to reinforce the cut-off fingertips. Some of my measurements were down at the end of active LE therapy relative to what they were when I was at subclinical (Stage 0) LE (which measurements were identical to those taken pre-op).

    I'll don my compression a little before 5 pm (flight's at 6:10, weather permitting). It's a 7-1/2 hr. flight, during part of which I'll be asleep (hopefully). I'll take it off at the hotel.

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