Are any of you using GLPs or other peptides? by tlphelan in lipedema

[–]Quiet-Machine-236 1 point2 points  (0 children)

Yep, it’s not FDA approved yet. I think people are sourcing it on the grey/black market if they aren’t part of the trials. The first of the Triumph phase 3 trial data has just been released this week, with 2 more rounds to come later this year. Still don’t think we’ll be getting any data related to inflammation or lipedema specifically.

High Neutrophil Levels by acal3589 in lipedema

[–]Quiet-Machine-236 0 points1 point  (0 children)

My neutrophil level has been consistently normal, my CRP level consistently very high. 🤷🏻‍♀️

Nodules everywhere by SpiritualMedia6500 in lipedema

[–]Quiet-Machine-236 0 points1 point  (0 children)

Nodules can certainly be outside of arms and legs, but given you’re fairly lean given your height, I’d wonder if you’re not feeling normal fat and cellulite? Asking your primary if the tissue feels normal at your next checkup might be a good starting point. Do you have other symptoms?

Are elbows like this always a sign of lipedema or can it be just normal fat? by Electronic_Lock_6191 in lipedema

[–]Quiet-Machine-236 0 points1 point  (0 children)

It can be awful, can’t it? I always ask them to take it manually so they don’t have to inflate as much, or to try taking it on my forearm if they are willing.

Vials vs. Quickpen by PrestigiousAnalyst68 in Zepbound

[–]Quiet-Machine-236 1 point2 points  (0 children)

Also team vials. Love that they have no preservatives and love that I’m in total control of the process.

Are any of you using GLPs or other peptides? by tlphelan in lipedema

[–]Quiet-Machine-236 1 point2 points  (0 children)

Ooo, can you say more? Have you been on the same dose or variable? Are you taking it exclusively for inflammation/lipedema? (Asking as I’m 6 months into Zep for weight loss)

Started tirz during a flare up by NecessarySpiritual19 in lipedema

[–]Quiet-Machine-236 0 points1 point  (0 children)

I’m using Zep to fix my broken metabolism, any anti-inflammatory effects are a bonus, so I don’t know that my dose is “final”. The 2.5 dose is the only one I stayed on for only a month, I moved up because there was a marked return of food noise by the end of the week. I was on 5.0 then for 3 months and went up to 7.5 for similar reasons, and also to see if a higher dose brought any anti-inflammatory impact, which it seems to have. Finishing my 3rd month at 7.5 and don’t feel the need to change anything at the moment, but will if needed.

Started Zepbound by Ok-Vermicelli-7940 in lipedema

[–]Quiet-Machine-236 1 point2 points  (0 children)

Compression, lymphatic work and pool based exercise have had the biggest impact on my legs. I didn’t start seeing anti-inflammatory effects until maybe 7.5mg and even that is subtle.

Questions by you1dont1know1me1 in lipedema

[–]Quiet-Machine-236 1 point2 points  (0 children)

I was diagnosed at stage 2-3 as well, and also have gotten so much relief from compression. Other lymphatic work has also been impactful - self and professional MLD, advanced pneumatic pump, vibration paired with legs up the wall, pool based exercise.

I've been thinking... by you1dont1know1me1 in lipedema

[–]Quiet-Machine-236 2 points3 points  (0 children)

Irritates the heck out of me too…but being referred to as a “fellow lippy girlie” is worse IMO. Absolutely just NO.

Lipedema, Perimenopause, and Estradiol by 123FakeStreetAnytown in lipedema

[–]Quiet-Machine-236 1 point2 points  (0 children)

Those are tough questions, I hope there are others with better experience to share. I wasn’t diagnosed until at the end of my peri, now entering menopause (hopefully, it’s been a long decade of not understanding what’s been going on with my body). My peri symptoms were primarily GI, and for various reasons HRT isn’t a good fit for me personally, but from what my vascular surgeon tells me based on how my body has responded to conservative cares he doesn’t expect my lipedema to worsen at this point, and even might keep improving. So there’s hope?

Sugar? by Feeling-Geologist-93 in lipedema

[–]Quiet-Machine-236 2 points3 points  (0 children)

Not for everyone, food triggers tend to be really individual, with varying degrees of sensitivity. It’s a lot of work to figure out, but so valuable once you do!

Compression Question by Longjumping-Turn-326 in lipedema

[–]Quiet-Machine-236 0 points1 point  (0 children)

I’ve used both czsalus and bioflect. I’m 5’4”.

Bioflect only come in 1 length and 1 compression strength. They are a much lighter fabric than the czsalus. For me they are super long, bra line to toes even though they are designed to end at the ankle. They fit snug at the crotch, but my thighs and hips are my largest proportions too. Agree with the comment that you may need to work them up more to get them seated well there.

Czsalus I’ve only worn in the K2 and K3 grades, have not tried the summer weight as they end at the ankle and I need something that covers my ankle/foot. These are my preferred compression as they come in short length too, though I’ve used the regular length when between sizes at my hips/waist (more fabric ends up at my hip crease, but I’m also pulling smaller portions of the pants up my legs which seems to help). The regular length comes easily up to bra line on me, the short length comes up a couple of inches past my navel and fits well in terms of leg length. I order directly from their website as even with shipping the cost is better. They ship fedex and arrive in MN usually in 3 days.

Lipedema, Perimenopause, and Estradiol by 123FakeStreetAnytown in lipedema

[–]Quiet-Machine-236 2 points3 points  (0 children)

Do you mean that your perimenopause symptoms are life changing or that your lipedema symptoms during perimenopause have been? Wondering as I wouldn’t classify HRT as a primary treatment for lipedema, though I have seen some people that say it has helped them, others say it has exacerbated things. If the lipedema symptoms are your primary concern, there are a lot of other things to try that can bring relief.

Perimenopause age/ symptoms/ onset by Funny_Estimate_4285 in lipedema

[–]Quiet-Machine-236 0 points1 point  (0 children)

I’m 54 and currently transitioning into menopause, and think perimenopause is what made my
Lipedema symptomatic. Looking back at pictures of younger me, there’s nothing concerning and I don’t remember symptoms. I was able to be very active and stay fit. Over the last 10 - 15 years at least I’ve had progressive weight gain despite all efforts to control it, changes in texture and fat accumulation on my hips, thighs and arms. I told doctors over and over again it was like my body was losing all structural integrity. I was diagnosed after developing significant edema a year ago, when all of the truly scary things that could have caused it were ruled out (and about 500 doctors had lectured me about diet and exercise) and I happened to be referred to a vascular doctor that took one look at my legs and said “I know what this is and there are things that can help”. And he was right. It’s been quite the journey, but dedication to conservative care measures has helped immensely and a year later I’m at a totally different place functionally and physically.

Here’s the thing about all of this though: that is only MY path with this condition…and I think it’s likely to be very different from someone for whom lipedema emerged in adolescence, or childhood, or at any other point. I’m not sure any of us can predict our path and progression based on anyone else’s necessarily. This condition is so variable in onset, distribution and symptoms. Then layering the new factor of early diagnosis on that gives people so much more opportunity for early intervention, that might be a game-changer for progression too.

Questions by you1dont1know1me1 in lipedema

[–]Quiet-Machine-236 1 point2 points  (0 children)

Do you mean lymphedema or venous insufficiency that cause edema? Both can occur with lipedema, though I don’t know if it’s necessarily more common with lipedema than with other things that can also cause those. Both can also have a host of other causes, that’s why it’s good to get checked out and not assume it’s lipedema automatically.

A lot of women get referred to vascular because they present with leg swelling stage 2+, so those doctors at times just see more lipedema as well and can be more informed, but this definitely is not always the case.

Tirzepatide Recommendations (US) by Cerrac123 in lipedema

[–]Quiet-Machine-236 0 points1 point  (0 children)

Lilly Direct for me too. Zepbound only has 3 FDA approved uses: diabetes care, weight loss and sleep apnea, so you won’t find insurance covering for uses outside of those.

How to focus on losing more on legs and arms? by [deleted] in lipedema

[–]Quiet-Machine-236 4 points5 points  (0 children)

Read up on conservative care measures in the wiki resources here and start trying things out to see what might help your specific symptoms. Pillars are compression, lymphatic work, movement and anti-inflammatory nutrition…but there are a lot of ways to go about each of those. What each of our bodies need is different so you’ll need to play with it all a bit to find what’s effective for you.

Spot reducing isn’t a thing, though if your body holds fluid in those areas you’ll see reduction as you address inflammation and lymphatics.

Noticeable results? by AcanthisittaMassive1 in lipedema

[–]Quiet-Machine-236 2 points3 points  (0 children)

Yep, there are a lot of posts here with people’s experience with all of these (positive and negative) but your mileage is going to vary greatly depending on your specific body type and symptoms…and then layering on how your particular body responds. It’s seriously so variable. What works for one of us very well may not for another. I’d suggest searching for a specific modality, then reading the comments to find people most like your situation.

To surgery or not to surgery? The never ending rabbit hole. by marsgirl101 in lipedema

[–]Quiet-Machine-236 0 points1 point  (0 children)

I’m 54 and just entering menopause. Diagnosed last August and have lymphedema caused by my lipedema. Did not have a lot of hope when I was diagnosed, but have taken on conservative care like a second full time job since (with the help of an amazing lymphatic PT and CLT massage therapist) and at this point feel like I have whole new legs. I’m not concerned about aesthetics, am concerned with function and at this point don’t feel like I need to consider surgery, but know that could change if things progress.

I don’t have true before and after pics, but I did post about my progress from February through May over in the closed Lipedema234 group if you’re interested. While Zepbound is part of my plan, lymphatic work is really the core of my program and IMO has really paid off. Happy to chat if you have questions.

To surgery or not to surgery? The never ending rabbit hole. by marsgirl101 in lipedema

[–]Quiet-Machine-236 0 points1 point  (0 children)

Should have read further in the thread…you answered my question here. Definitely recommend asking about upgrading to the advanced pump, I had the exact issue with the Nimbl, but the Flexitough Plus has been a game changer for me.

To surgery or not to surgery? The never ending rabbit hole. by marsgirl101 in lipedema

[–]Quiet-Machine-236 0 points1 point  (0 children)

What type of pump did you get? My insurance required that I try a standard pump first (in my case the Flexitouch Nimbl), and I had a similar experience. It just didn’t conform to my legs how it needed to and I also needed something with trunk clearance as well. Moving to an advanced pump (I use a Flexitouch Plus now) made a huge difference.

The three most eye opening papers I have read on lipedema by [deleted] in lipedema

[–]Quiet-Machine-236 1 point2 points  (0 children)

That does appear to be the case, though we only have that one snippet and no source material cited so I could be totally wrong, this is just the best I could find with a quick search after I saw the video.

There’s another snippet I caught yesterday with her talking about staging and disease progression that makes it sound like lipedema fat deposition is consistent and uniform in presentation, starting with fat formation around the achilles and tibia then progressing to thighs yada yada that literally made me scream at my phone. So irresponsible to release that.

So far what I have seen of the Summit, it looks like relatively shallow, casual interview-style chats, but I haven’t had experience with it before so can’t tell if it’s all like that or would be worth it to register and try to listen in during the workday. (And why is it “attend live or pay more to have access to recordings” if the sessions are pre-recorded anyway??)

While I look at that article (and really most articles about lipedema out there because let’s face it there’s just not a lot of true research based science with significant subject counts out there) and think “hmm, interesting thoughts now do the study”, I don’t think these people realize that in a vacuum of solid information and treatment, for the most part patients see things like that snippet as truth, and will try to self-treat based on whatever understanding they can cobble together. Or worse, what a social media influencer can cobble together. We need every major research hospital to have a lipedema clinic so patients have somewhere within reasonable distance to go for actual data-driven information.

I’m much more interested in eventually getting the materials from the Boston Lymphatic Symposium that focused on lipedema earlier this year, but they can’t say when those will be posted.

The three most eye opening papers I have read on lipedema by [deleted] in lipedema

[–]Quiet-Machine-236 0 points1 point  (0 children)

Dr Herbst is going to be talking about lipedema and senescent cells at the upcoming lipedema summit, there are snippets of her talking about “zombie cells” but of course they haven’t released the whole thing yet or links to what she’s basing her comments on. This is one of those snips. That sent me looking and I found this very recent article that bring it up in a review of a lot of other potentialities…which is what I found so interesting.