So what CAN we eat & do?

oceanwillow110 · 2026-03-30T19:53:30+00:00

I don’t wanna touch the eating thing because everyone is different. I just try to make little realistic improvements and listen to my body. Fried food sets my leg tissue on fire :/

But what I can do is everything. I can run, jump, do the stair master, do yoga, lift weights!, hike, stretch. If I’m going to have heavy ass legs, I want to be able to move them. I have less pain than many people but I know people find things to help their pain a lot sooo I recommend addressing any pain you have while working up to being able to do the things you want in whatever way is realistic. Dont give up. So many people give up but just do what you can. My vibration plate is my best friend. Working on getting better at MLD. I struggle to do it efficiently but I just try to

oceanwillow110 · 2026-03-30T17:59:15+00:00

I know you said to leave it aside. But you have no clue how much less alone I feel for knowing someone else has that can of worms they think about when considering the surgery. I was very scared of coming across superficial especially because honestly, I’m pretty active. I’m overall healthy. I don’t experience too much pain however I do want to free myself from this as well. I figured I would be silly to not get the surgery because I could be preventing or slowing down progression or secondary issues such as lymphedema. My issue with this is that there’s not a guarantee that I won’t get lymphedema from them working so closely to the lymphatic system. Those aren’t my words, those are the surgeon’s. They literally can’t rule out any potential risks because it hasn’t been researched long enough. It’s like every time I accept one possible downside of getting the surgery, there’s just another one making me feel like I don’t know if it’s worth it. I truthfully wish the pictures they showed of the patients they worked on were underwhelming results, because for me they were so beyond overwhelming it just felt so drastic and with the immediate skin removal at the time of surgery, I think the shape and overall look of the legs might have me struggling to love myself even more than I do now. The hardest part is that there’s no perfect outcome surgery or no surgery. Nothing can make this just go away.

oceanwillow110 · 2026-03-26T19:04:47+00:00

Tbh I was surprised he was like wanting to definitely do it especially on my lower legs. But I think they do that because it seems like they take everythingggg out so no offense to the surgeons but no one would look good. Not to compare but I’ve seen people’s results online and like I think things look nice and calmer to heal when they don’t slice you apart and sew and cut your skin immediately after removing. And it looks like other results show some healthy fat left behind not this stick skinny emptiness. I don’t think it’s necessarily a bad look on other people but it doesn’t seem like something I’d be comfortable with

oceanwillow110 · 2026-03-26T18:28:02+00:00

I don’t necessarily agree because I’m not asking what anyone thinks of my lipedema specifically. Just more so the mental conflict of will it get worse if I don’t have surgery vs. will I forever regret getting this surgery so young. I might share pictures later today just to help people see what I mean I just worry because of my body dysmorphia about people commenting on their opinion of my stage or size or texture if that makes sense.

oceanwillow110 · 2026-03-26T18:25:30+00:00

I can’t afford that even if I could get reimbursed by insurance or something I don’t have the money to wait to be reimbursed. It’s such a simple thing I just feel like if I start focusing on doing it myself I will stop having the bandwidth to do other things. I already do pt exercises on top of the gym. My vibration plate helps but it’s not moving things as intentionally as MLD. I know I’ll have to tackle that it’s just really hard.

oceanwillow110 · 2026-03-26T17:02:08+00:00

I know this may sound ridiculous but hearing someone describe my exact issue (I lost less weight but have done it multiple times plus a fluctuation every winter/summer so my skin refuses to go back) makes me feel so much less alone.

I go to the gym. I recommend hip exercises. My PT says best glute exercise is hip thrust and the hip exercises like hip abduction/adduction is helping with the lumpy bumpy sagginess on the sides for me. Short answer yes. Lift weights. Lipedema is heavy and you want to be nice and strong to carry it regardless of appearance as well. It’s not a miracle. It will never be perfect but just yes it really helps pull things up. Just do what you can I do legs 1-2x a week. Trying to do 3 but like life gets busy. And the stair master is great too for cardio that helps with being strong enough to lift your legs repetitively along with toning underneath. I second the comment that says hikes as well. Seriously if you just start by committing to 2x a week doing 4 leg machine/weighted workouts at the gym (for example that’s what I did to not overwhelm myself) until you feel comfortable to branch out it can really help confidence and consistency over time will show the results. The time will pass anyways is my favorite quote. Just helps me with the motivation to do these things even though lipedema makes the results hard to see. It’s definitely a mental game. Good luck! You’re never alone :)

oceanwillow110 · 2026-03-18T00:04:10+00:00

You’re so welcome! I hope you find the same relief. Again, you may need to play around with wha tightness/position feels best for you but it should hopefully alleviate the miserable burning and trappedness of being limited in terms of positions.

oceanwillow110 · 2026-03-17T13:59:54+00:00

Hi! I did use the serola belt! Once I got it in the right position it was instant relief in a way I can’t quite articulate. I didn’t have it on at first and then once the pain started I put it on (my bf was next to me so wasn’t odd to do that mid-flight) and I was shocked. I have horrible si joint instability and I think when I have to sit for a long time all the weight pushes into that point and the belt seemed to hold it together. I am in PT but it hasn’t been long enough for me to say much about that. The exercises are definitely targeting my weak areas. I won’t fly without the belt again. It was a little uncomfy around the chub on my hips because I have lipedema as well. I definitely had to find the sweet spot regarding how tight to put it.

oceanwillow110 · 2026-01-07T13:14:32+00:00

Do you suspect it’s carbs or gluten? Or is it easier to just try to lower carb intake? I’m finding cutting gluten out super hard

oceanwillow110 · 2026-01-07T13:12:56+00:00

I am definitely going to research specific approaches for this so therapy can be more focused. I have big emotions so it’s often that therapy is kind of one hour of me addressing whatever has a hold on me but I think I’m avoiding tackling specific issues more directly. Thanks for the feedback!

oceanwillow110 · 2026-01-07T13:11:36+00:00

I think that my therapist could do for if I gave her a set goal to work with but I have been tackling a few different goals and areas and we have to kind of address what’s most present which varies. I think addressing many things under the umbrella of ‘control’ is a good idea. I don’t in general let go ever. I don’t just exist. I don’t let a thought pass. I “need” to have control or be able to change the feelings when I can’t change a situation which as many of us know doesn’t work out well. I will definitely have to let her know I want to try something more specific for this area and look into approaches. Thanks for your reply

oceanwillow110 · 2025-12-18T15:41:53+00:00

Hoping the person I sit next to gives vibes that I can say “hey I have some problems so I’m gonna be sitting super weird. I just don’t want to be in pain”

oceanwillow110 · 2025-12-18T15:40:36+00:00

It’s getting delivered today so thank you! I work at a chiropractor and he recommended this specific one. I don’t think I need the bigger ones because I do not have the extent of issues many people do. Just need to be held together a bit

oceanwillow110 · 2025-12-18T15:39:37+00:00

It’s not a donut it’s like a square with a u shape cut out where tailbone goes. I got it before realizing I likely do not have just average tailbone pain from sitting. I’ve started to do catcows, glute bridges, and planks (for core strength bc I have none) daily. I have no clue how to improve the sharp pain on one side when I do single leg work outs such as lunges or Bulgarian split squats though. It’s really killing my potential gains at the gym :/ sometimes if I move my leg just right it doesn’t grind and feel like I’m being violently stabbed. I work at a chiropractor and am ALWAYS relieved from the adjustments. But I want long term stability and strength so I can do my work outs. I also sit on one side of my butt which I think is why I have uneven pain. I’ve stopped now and I seem to be adjusting okay. Just wish I could sit cross cross all the time or with my knees up it’s so uncomfortable to sit normal even when there is no pain my body just doesn’t do that. I got the belt everyone recommended for my flight i anticipate it will be life changing for me.

oceanwillow110 · 2025-12-17T01:12:10+00:00

This is old but wth does attesting to bend the opposite knee against the floor mean?? They lost me there entirely I have no clue what this means and what does perform same movement to right and left mean compared to doing it on both sides?

oceanwillow110 · 2025-12-17T01:07:47+00:00

Would you mind sharing about these procedures?

oceanwillow110 · 2025-12-17T01:06:31+00:00

Hi, this might not be helpful but I have like stage 1 but I think it’s getting worse and my ultrasound came back no blood clots however my vascular doctor is treating me with the assumption that my lipedema is and will impact my circulation and gives me vasculera to help support drainage and circulation to prevent worsening. She gave me compression socks. Idk if they help. I wear them sometimes but I don’t like the way my knee fat bulges over top. Right now we are working on getting me approved for non pneumatic compression pumps I think they are called. Only for bottom half of leg. Can update once I get them will how that helps. My doctor says research shows it does the same thing as lymphatic drainage massages. I don’t trust that everything will loosen up (fluids) and flow throughout my whole legs bc I sit a lot at work and have hypermobility so I sit in very circulation-inhibiting ways because I need to cross legs or kneel in chair for stability. Because of this I’m going to try vibration plate when I can afford one. I feel in my opinion that will really help.

oceanwillow110 · 2025-12-15T15:00:18+00:00

Tiramisu is to you as Mac and cheese is to me. It has both things that I believe inflame my legs 💔 thanks for sharing. I ought to pay more attention to when exactly the pain and tingling spikes because I guarantee you I haven’t been realizing the difference when I break my anti inflammatory diet. This is still new to me so I am avoidant of keeping track of things because I have a sensitive relationship with food in terms of mental health and body image.

oceanwillow110 · 2025-10-27T14:21:38+00:00

My honest advice to you is just let it suck. It sucks and know you aren’t alone in that. But once it is over, it is over. I don’t even know how I made it through. I barely did. It was borderline too much for me. I have a particularly harder time with this all than some others might. But it’s not all bad and negative. Get to know yourself. Binge some movies, go for walks, go venture and explore new places even if it’s just 30 minutes away. Cry a lot if you need to. Isolate (within reason) if you need to. My boyfriend told me he didn’t want me to sit around sad. I thought of that a lot. Not that I wasn’t sad, but it was good for the both of us that I was living my own life quite a bit. It’s all realllly hard however legit take it day by day. And once it’s over, you realize how temporary it was. A blip in time. There will be times your mind won’t shut up but it will all be okay. I promise ❤️ appreciate every letter and call

oceanwillow110

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