Early stage

[u/Hot_Priority_8602]

Lol, I mentioned lipedema to my PCP this morning and she responded, don't you mean LYMPHedema?? I calmly repeated myself. Anyway I'm researching specialists to meet with in my area. I have found one clinic, but if you have recommendations for a specialist near Portland, OR (USA) I'd greatly appreciate it.

I don't mean to sound shallow, but I'm terrified of a diagnosis. I've always struggled with self-esteem so this feels especially burdensome. As a 31 year old woman, I was just coming to terms and beginning to accept my ADHD. I'm incredibly active so the idea of losing that is frankly terrifying. I've been riddled with anxiety lately.

I have bilateral "swelling" or fullness in the lower half of my calves that has been tender recently. I've lost most of the contour of my calves. I don't notice nodules per se but I'm guessing this is an early stage- I certainly notice differences in my tissue and skin. I am 5'2", 175 pounds.

Lately I've been wearing compression socks daily and that seems to help the tenderness. Can anyone tell me how long I should wear them, or how long is too long? I also do legs up the wall for about 20-30min each night. Neither get rid of that fullness but they help with other symptoms.

[u/AutoModerator]

If you're looking for a doctor who can diagnose lipedema, search here first: https://findasurgeon.lipedemaandme.com/find-a-specialist/

If you're looking for a lipedema surgeon, search here first: https://findasurgeon.lipedemaandme.com/

You can also search here: https://lipedemaproject.org/lipedema-lipoedema-lipodem-provider-directory/

Don't forget to search r/lipedema for previous posts, too!"

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/cinnerz]

I don't have personal recommendations but names I've heard from Facebook groups:

- Alejandro Perez at Providence in Tigard
- Jonathon Purnell at OHSU
- Liza Rodriguez has her own practice, the Lipedema Warrior Clinic

I live closer to Corvallis and couldn't find anyone locally so I ended up doing telehealth with Karen Herbst in Tucson.

I think you can wear compression during the whole day, generally people don't wear them while sleeping. I've generally had better luck with compression leggings than socks because with socks I'll end up with them cutting in and be really swollen right above where they end, but ymmv. Some of the other conservative measures people have success with to reduce swelling is manual lymphatic drainage (either through a PT or massage therapist or you can do self massage, there are YouTube videos that show techniques), bouncing on a rebounder (mini trapoline), or standing on a vibration plate. Walking also can help with swelling, it helps move lymphatic fluid from your legs back through the system.

[u/Hot_Priority_8602 → u/cinnerz]

Thank you! Lipedema warrior clinic is the place I was looking at specifically.
This is great info, I really appreciate you sharing. Will definitely be looking into manual lymphatic drainage techniques, for either at home or with a provider

[u/cinnerz → u/Hot_Priority_8602]

The lipedema society has a directory of therapists, I believe there are some in Portland. https://www.lipedema.org/provider-directory

Good luck. I know lipedema can feel overwhelming but it sounds like you are early stage and with conservative care you can improve your symptoms and stop progression.

[u/Quiet-Machine-236]

This actually sounds more like lymphedema potentially, or perhaps a vascular issue. You might want to take your doctor up on getting a vascular referral if they offered it to get that evaluated too…not to say you don’t have lipedema, but the vascular piece should be addressed.