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Real members of myHSteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A myHSteam Member asked a question 💭
Utica, NY

Just wondering if anyone else with HS has dealt with chronic and or recurrent generalized lymphadenopathy? And also had nodes swell that never returned to their normal non feel-able size? Thank you for any help.

November 30, 2022
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A myHSteam Member

My doc says my lymph nodes swell to the size of golf balls. Always the ones around lower pelvic region. When they swell the pain is so bad I go white as a ghost and the nodes hit a nerve that causes pain from that area down the front of my thigh. They just keep giving me tramadol (sp?) and calling it a day! I've learned 3 Motrin and 2 Midol take the edge off so I can function. Pain is still there but doesn't make me want to reach in and rip my lymph nodes from my body.

December 15, 2022
A myHSteam Member

Have you tried self lymphatic massages and stretching to get some of that fluid moving and draining?

December 5, 2022
A myHSteam Member

Look like I’m getting lymphedema and I’m scared? 😳😳😳😳😳😳

December 5, 2022
A myHSteam Member

It is best to not remove lymph nodes as it raises risks of lymphedema.

December 4, 2022
A myHSteam Member

Lymph can get damaged if swollen too long. The vessels the lump flow through get damaged and blocked. There are drugs that help open them though

December 4, 2022

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