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Discouraged with lymphedema: How do you cope?

Breast Cancer | Last Active: Nov 5 11:50am | Replies (27)

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@asf61

"people don't realize that while lymphedema isn't fatal, lymphangitis/cellulitis can lead to sepsis and that is fatal. They don't realize that when you're missing lymph nodes, a small infection can lead to this complication. And it happened very fast. One night I felt fine and the next morning I was sicker than I had ever been."

This is very true. I have lymphedema and chronic venous insufficiency in my legs since 2013 and only take off my stockings to take a bath or shower. I have had cellulitis 3 times since 2013 and twice ended up in a hospital for one week each time. I found a good veneous doctor in my area and have had ultrasounds, CT Scans, MRIs and now have a pneumatic pump by Lympha Press. It sucks and is discouraging that there is no cure BUT it can and I do manage it. I also had a vein ablation on both legs in 2019 which changed most of the swelling from my legs between my knee and ankle to my feet. I take off my stockings and within 10 minutes my feet are starting to swell and hurt and it feels like the skin is stretching. It is important to have a good vascular doctor or team of doctors. And to try not to get too discouraged.

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Replies to ""people don't realize that while lymphedema isn't fatal, lymphangitis/cellulitis can lead to sepsis and that is..."

I too have had cellulits and ended up in the hospital. I have a pneumatic pump also. Yes, I agree, it sucks to be tethered to a machine every day. For me, if I'm not in compression, it takes about twenty minutes for the swelling to start. I was managing it really well for quite some time but recently the swelling inexplicably got worse. My lymphedema therapist told me to go back to the "wraps" (elatic bandages on my arm and gauze around my fingers and hand) that I wore when I first was diagnosed. I realized I have to know that I've done all I can to control this.
I just filled out the six page questionnaire for Beth Israel's Lymphedema Center. They will review it and determine the next steps for treat it.
They call this "Cancer's Dirty Little Secret." As much as I wouldn't wish this on anyone it is so good to hear your story and frustrations because I realize I'm not alone with this. I don't have pain but I sure know what you mean about feeling the skin "stretching". It feels like my arm is being pumped up like a tire or a balloon. Thanks for sharing your story and for your encouragement.