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Topic: Help!! Sleeve HURTS! And Gauntlet Purple fingers!

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Jun 4, 2019 10:46AM - edited Jun 4, 2019 10:48AM by QueenB44

QueenB44 wrote:

Okay.. I need some advice. I'm flying on Thursday for the first time since my surgery in December. I was diagnosed (mildly) with LE in April - Fitted for a sleeve that I didn't wear because it hurt. I never wore the sleeve until today. Since then any swelling I had has basically disappeared.Even painted a room with no problems. Today I finally got into to see the LE specialist today. He said I really had a fluke bout of LE from breast saroma and swelling and that he thought I needed to wear the sleeve every day and when I fly as a precaution. I was sent off for a refitting. I spent 6 hours at work in pain! My inner arm/elbow was red when I took it off. When I put on the Gauntlet it made my fingers purple. WTH?? Any suggestions? I'm leaning toward it just not fitting right and saying screw it and risk the flight.

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Jun 4, 2019 11:13AM ruthbru wrote:

I would not wear anything that hurt, made my arm red, and was turning my fingers purple!!!

I believe if a sleeve & gauntlet don't fit correctly, they can do more harm than good (which seems to be the case to me). I don't have LE (so I hope someone who does will respond). I don't wear anything for flying. The precautions I take are to stay very hydrated, wear loose fitting clothes, no rings on that hand, check my luggage, move my arm around a lot, make fists etc. and get up and walk down the aisle one or more times during the flight. So far, so good ( I will now knock on wood!).

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jun 4, 2019 11:31AM QueenB44 wrote:

ruthbru my thoughts exactly! This is NUTS!!

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Jun 4, 2019 03:01PM ruthbru wrote:

Wearing something that is doing those things to your arm could CAUSE lymphedema!

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jun 4, 2019 08:01PM gb2115 wrote:

My question is how did you make it through 2 fittings and not end up with garments that fit correctly? Sounds like someone different needs a go at that!!!

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Jul 10, 2019 10:31PM Mavericksmom wrote:

Poor fit is exactly why I stopped wearing a sleeve and gauntlet eleven years ago!

My lymphedema didn't seem to get worse without them until I had my second breast cancer and mastectomy/DIEP reconstruction in January of this year. I'm reluctantly going to see a new therapist today. My MO wanted me to see one because of the increase in swelling. I am dreading the whole wrapping/new garments thing and I know it will cost me a lot more than it did years ago. I am going for a consultation (1 hour) today, so I am not sure what the therapist will recommend.

I really hate that this condition exists. It is a life sentence. I know there are worse things, but it adds to my depression.

I just got back from vacation, 3 days, one way, by car to see my son and family, because I am too afraid to fly. My son said he didn't think driving all that way was any better for the lymphedema. I know I can't do that drive again, just too much!

I am trying to have a positive attitude, planning a more plant based diet and incorporating an exercise program.

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