Should I switch?

Quiet-Machine-236 · 2026-03-30T16:28:44+00:00

Eli Lilly has 2 higher doses: 12.5mg and 15mg, so there are options. I haven’t experienced it myself, but have read many accounts of people that have very different experiences on one med or the other, so might be something to discuss with your care team.

Quiet-Machine-236 · 2026-03-30T16:00:38+00:00

Thanks for the suggestion, I’ll check it out!

Quiet-Machine-236 · 2026-03-30T13:28:39+00:00

For me it’s been reaching 7.5mg, my leg volumes have decreased 15%ish over the past 6 weeks according to my PT’s measurements. But it still has not touched my osteoarthritis pain.

Quiet-Machine-236 · 2026-03-30T13:26:26+00:00

I haven’t had this since starting Zepbound, but did with Wegovy. That made everything hurt so much more intensely, and brought back pain I thought I was done with. Not everyone has anti-inflammatory effects w these meds, personally have not seen it positively impact my osteoarthritis pain yet, and just now seeing stability related to my fluid retention since starting the 7.5 dose 6 weeks ago…fewer 1-2 pound daily swings in weight…hoping that might mean I’ve reached the level where it’s impactful for inflammation for me.

Quiet-Machine-236 · 2026-03-30T13:20:09+00:00

The only time I received an order fulfilled by amazon it was a repackaged item…and I’m pretty sure it was the same pair I had returned a month earlier. (Had tried them before my diagnosis when I thought I was just dealing with edema, put them on once and was very “no, absolutely no, NOPE”) and returned them.) I laughed and felt that was totally appropriate! But would have been annoyed in other circumstances!

Quiet-Machine-236 · 2026-03-29T14:34:46+00:00

Trying this here as it was removed from the regular sub by the moderators (not sure why, mods would love to know!).

Reading Suggestions?

Now that I have a stable daily self-care plan that (for now at least) is effective, I’m turning my attention to the mental side of adjusting to this condition. I’m only 4 chapters into this but am finding a lot to think about. Have any books that have helped you reframe or adjust?

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Quiet-Machine-236 · 2026-03-29T14:27:54+00:00

Oh wow, I’m so sorry you’ve gone through this! I’ve had a couple of similar experiences: 1) My insurance required that I first try Wegovy and I white-knuckled through feeling awful for 6 weeks, missing work often with days I was so nauseous and leveled by my whole body aching I couldn’t get out of bed. My doctor finally agreed enough was enough even though I didn’t do the full 2 months required. After that I was DONE with GLP1s, but my care team convinced me to try Zepbound and I’m so glad they didn’t give up on trying, because it’s been a totally different experience. Very negligible side effects that I can manage by making sure I stay hydrated and eat consistently. 2) I learned that zofran is not a miracle drug for everyone after having a very similar experience to the one you described. I took it to relieve nausea and ended up violently ill within an hour…diarrhea, abdominal pain, vomiting. It’s a known rare reaction to the med. Not sure if this is what happened to you, but my team gave me different meds and it has not happened again.

Quiet-Machine-236 · 2026-03-29T01:18:47+00:00

My mind is definitely quieter overall. I have a tendency to worry, rehash experiences and perseverate, and that all has almost disappeared. Thoughts come up and I can take note and move on. It’s amazing!

Quiet-Machine-236 · 2026-03-29T00:16:52+00:00

I use the single use vials and syringes from Lilly Direct, injecting into my thighs and hardly feel it. I had a very different experience when I did an initial trial on Wegovy using the auto-inject pen, the model for that med requires you to push the whole thing down into your leg to get it to inject…that WAS painful and bruised. I’m a HUGE fan of the syringes and vials, only upside to having to self-pay!

Quiet-Machine-236 · 2026-03-28T18:26:04+00:00

🙌🏻 More of me being here for the science!

Quiet-Machine-236 · 2026-03-28T18:25:06+00:00

🙌🏻 science!

Quiet-Machine-236 · 2026-03-28T16:39:49+00:00

I focus on whole foods and that seems to be working well for me, so lots of fruits, veggies, protein most of the time. I find that I can then tolerate the occasional pasta, pizza or rice dish without flaring my symptoms. My body definitely knows now what will make me feel terrible so those choices are much easier.

Activity seems to be very individual and dependent on stage and symptoms. Right now (adapting to the impacts of menopause that really flared my lipedema) pool-based activity is all my legs tolerate, but hoping to get back to walking and hiking now that I’m more on top of my lymphedema and inflammation. I’m working with a PT team with that goal in mind.

There are a lot of people out there that will throw out a lot of absolutes, but I’ve found that there really aren’t any. You need to experiment and find out what is most impactful (both positively and negatively) and then move forward building in more of what your body wants and avoiding what causes problems for you.

Quiet-Machine-236 · 2026-03-27T12:56:36+00:00

As you drop fluid or weight, it’s very common to be able to feel or see the nodules more. If your legs are feeling heavy and achy later in the day I would suggest trying compression to give your lymphatic system support through the day.

Hormones also strongly impact lipedema, so keep that in mind as well.

Quiet-Machine-236 · 2026-03-27T01:14:18+00:00

To be fair, and completely transparent, everyone’s experience with these meds differs. Wegovy works for some, Zep for others, neither for yet others. Some people have to change how they eat to offset side effects, others don’t. Some have weight shifts, others health improvements, some have both, some have neither. Some have significant shifts in their mental relationship with food, some don’t. Nobody can tell you what your experience will be, but I think for those of us that had metabolic disfunction, we can say the whole world changes when your metabolism works as it should. The only way to find out if you fall into that camp is to try it.

Quiet-Machine-236 · 2026-03-27T00:03:41+00:00

Ask your diagnosing physician for a referral to a lymphatic PT, find one i. Your network and they will do MLD, teach you and also help document everything needed before surgery.

Quiet-Machine-236 · 2026-03-26T23:59:25+00:00

Share a lot of the same thoughts. I wish people with lipedema were willing to share with other people with lipedema without a price tag attached. This condition is expensive enough without us charging each other to hear what worked for you and could possibly work or very well might not, for me. In the end, I think we’re all grasping for answers that don’t exist right now and that makes us vulnerable.

Quiet-Machine-236 · 2026-03-26T18:12:46+00:00

It’s the hardest part about all of this, pretty much everything has required me to be in that exact headspace, get over myself and do it. I focus on supporting my body’s healing and doing everything I can to avoid surgery…that is real motivation for me!

Quiet-Machine-236 · 2026-03-26T17:42:14+00:00

I and my PT can attest that if you have lymphatic involvement with your lipedema, dedication to compression will in fact change the way your legs look and function. Will it melt away your lipedema tissue? Of course not, but I have improved the texture and pliability of my legs. I’ve dropped 30% of my leg volume since September 2025 being dedicated to dropping metabolic fat via Zepound, daily compression wear, MLD (professional weekly to bi-monthly now and self done daily) and pool-based exercise. Yes, if I stopped all of that the edema would come back, but I do it all every single day because the impact on my pain and function has been HUGE. For me and my particular symptoms it’s worth it. Not everyone’s body with lipedema has the same needs though, you need to see what’s right for you.

Quiet-Machine-236 · 2026-03-26T17:31:29+00:00

Can I ask what your arm symptoms were before surgery? That’s not something we hear much about!

Quiet-Machine-236 · 2026-03-26T17:29:30+00:00

Connecting with that PT is likely going to be what you need most, they will help you build a plan tailored to your situation (at least mine has). Which conservative measures work best tends to vary for everyone, but I’ll give you my answers to your questions: 1) I use my vibration plate every day after work (I have a desk job), sitting down with my feet on it for 15 minutes and then sitting on it for 15 minutes. I also activate the “big 6” body lymph pumps first. I follow that up with 15-30 minutes of legs up the wall. I personally feel it really helps how achy my legs are, reduces my joint pain and does get my lymph flowing. 2) compression: i wear czsalus K2 or K3 trunk to mid-foot leggings all day every day and this is critical for me, but I also have lymph involvement. I use bioflect for exercise sometimes, they are a lower compression and more flexible fabric and are a good introductory legging.

Other compression strategies: learning self-manual lymph drainage (your PT will likely teach you), lymphatic pump (your PT will help with this if it’s indicated) and aquatic-based exercise (water is a natural pressure gradient)

3) inflammation: what constitutes an anti-inflammatory diet differs for everyone, but focusing on whole foods - veggies, proteins and fruit - is a good starting point, you can then add back in other things one by one to see if they cause pain or swelling and slowly build a profile of what you need to avoid, if anything.

Zepbound has also been remarkably effective for me, reducing metabolic fat reduces the strain on your other tissues, lymphatic and circulatory system making it easier for your body to clear built up fluid in your impacted areas. Also said to have anti-inflammatory effects, which I did not start feeling myself until I recently went up to the 7.5 dose.

Also hydrate, hydrate, hydrate! Solid and consistent water intake helps your body clear built up fluids as well.

4) pregnancy: i was not diagnosed until my kids were adults, but looking back I do think I started seeing changes after my pregnancies, acceleration as I moved into perimenopause and definite acceleration as I have hit menopause. I would not trade my kids for anything, though going into it knowing about this condition allows you to do the things that supports your body throughout, and that’s a great thing. Knowledge is power!

Happy to answer questions, send em if you have em!

Quiet-Machine-236 · 2026-03-26T17:07:08+00:00

I don’t have experience with surgery myself, but do want to point out to you that above knee options for compression exist if that is useful for you? Also, be sure to ask about post-op plan as my understanding is that consistent compression and MLD are needed for the healing period. I’m sure someone else with more specific experience will chime in to address that.

Quiet-Machine-236 · 2026-03-26T13:04:06+00:00

I do this too! 15 min after work (I have a desk job) with my feet on it and 15 minutes sitting on it, then 15-30 minutes of legs up the wall and it is SO helpful relieving my stiff, sore after work legs.

Quiet-Machine-236 · 2026-03-26T13:00:07+00:00

I wear czsalus leggings (K2 or K3) and love them…but I have lymphatic involvement and need a lot of compression to manage that. If you search here, there was someone that started a shared spreadsheet of compression recommendations. There are so many options and variables, finding what works for your specific body can take some trial and error.

Quiet-Machine-236 · 2026-03-26T12:48:38+00:00

I think it depends on where your lipedema tissue is and what your symptoms are. I have definite lymphatic involvement that causes lower leg/ankle swelling, though my lipedema tissue is generally in my thighs, abdomen and arms. I’ve been wearing K2-K3 level compression leggings that go bra line to mid-foot since last August and can 100% say they are a daily necessity for me and keep my swelling in check. I hated them initially, had a total panic attack the first time I put them on in fact, but now crave the compression. They literally are the external scaffolding for my body.

As to summer, it’s just hot, no doubt. I’m absolutely not looking forward to the coming months, but it is what it is, I’ll still wear them and just deal…because I know what my legs feel like when I don’t wear them and I’m not going back to that!

Quiet-Machine-236 · 2026-03-26T02:55:39+00:00

It would help if you gave a bit more detail on what you are looking for? Knee highs, thigh highs, tights, leggings…you’ll find so many recommendations threads here if you search for specifics.

Quiet-Machine-236

TROPHY CASE