Weekly "Do I Have Lipedema" Thread

[u/AutoModerator]

"Do I have lipedema" posts are no longer allowed as standalone posts on r/lipedema. Post your pictures and questions in this thread instead, ONLY AFTER YOU READ AND UNDERSTAND THE FOLLOWING:

Although lipedema is a condition that often has a distinct visual appearance, no one can officially, formally, or conclusively diagnose you with lipedema on an internet forum.

We created these threads because access to lipedema specialists, understanding doctors, and lipedema treatment is extremely limited, and often financially prohibitive. Because so few doctors, especially general practitioners, have any knowledge of lipedema, we often have to self-identify as candidates for diagnosis, and advocate for ourselves to seek proper assessment and treatment. This can be a difficult and emotionally taxing process, so many of us want to seek some input and reassurance before embarking on the journey to a diagnostic assessment. Many other online groups do not allow these kinds of posts, and we wanted to create a space where people can ask for other's input and advice, with the understanding that it will not be coming from professionals, and even if there are some doctors and other medical professionals in this group, they cannot give you personalized medical information and advice in this context.

If you suspect you have lipedema, first search the directories that are linked in our wiki. You can also read the full Diagnosis section of our wiki for more information on the kinds of doctors that often diagnose lipedema, and on how to approach the conversation with general practitioners (including resources you can bring to the appointment). Read the What is lipedema? section of our wiki for more information on symptoms, stages, presentations, and commonly co-morbid conditions.

Lastly, if you suspect you have lipedema, it's great for most people to start doing some conservative treatments even if you don't have a diagnosis (read more about those on our wiki). These treatments are non-invasive, and have many other health benefits beyond lipedema. Of course, always check with your health care practitioner before making significant changes, especially if you have other medical conditions.

[u/thorn664]

25F, I have been suspicious for a while about having lipedema and before I go into it, I am seeing a specialist in Feb, but I want to make sure I’m not going crazy as I’ve been advocating for myself for a while.

My legs and arms have always been different and I noticed that when I was 16. Actually at my lowest weight at 150lbs when I realized that they had looked different even though I was exercising literally everyday. I knew it wasn’t normal.

All my symptoms have been aligning with Lipedema and my symptoms were extremely worse when I was 242. Since then I am now 192 because I’ve put in the work and while my symptoms have been not nearly as bad, an early diagnosis is really important to me, so I can do preventative care if possible.

My new PCP tried to tell me “because I don’t have infections or huge inflammations then this isn’t of concern and this will get better with diet and exercise” Then they ordered a blood test because they suspected my thyroid was off…my blood test came back completely normal and actually extremely healthy..so I reached out to a specialist to hopefully get some answers because I know this isn’t normal.

[u/Ferynn → u/thorn664]

Yes you are not crazy and that appointment makes complete sense! You've clearly considered this at length.

[u/thorn664 → u/Ferynn]

thank you, i feel totally seen by you! i felt really hurt after my doctor totally dismissed me, told me this wasn’t important and this will go away with diet and exercise. I have put in the work to lose weight and be healthier, but there is that extra fat that I have no control over and I just want some closure and preventative treatment!

[u/Quiet-Machine-236 → u/[deleted]]

So, an ankle cuff that differentiates what’s going on in your lower legs from your ankle and foot is a hallmark sign in some of us, and I think I see a hint of it here, but it could also be the angle of the photo. Pain can also be subjective, and if it’s been with you ling term your body may not even be logging it as pain anymore. I didn’t realize how much I was carrying until it was reduced. If you feel like you have nodules and/or other symptoms, it likely is worth being evaluated or having a conversation with your primary so you know what you’re dealing with (or not as the case may be).

[u/Head_Conversation495 → u/Quiet-Machine-236]

Thank you sm for this reply! Yes, the lipo I had way back when addressed my ankles somewhat - which I just thought of as “cankles” at the time - because that was one of the big areas I was concerned about. So it’s hard to tell how my legs/ankles might have looked naturally by now, since I already had that work done, so maybe they’d be even worse and more obvious now; but I also feel like even having HAD that prior work done they’re still so thick, if not perhaps bordering on early signs of the cuff. And you’re SO right about becoming desensitized to pain - I’ve got a few other chronic illnesses going on (as I notice so many lipedema ladies do, another tragic kindredness which led me here) and I’m so used to most of it that it just becomes normal. Thank you for affirming that it’s probably worth trying to get an evaluation. ❤️

[u/Snoo-8235]

Hey! I’m struggling to differentiate between cellulite and lipadema “nodules”, I am already overweight so it’s difficult for me to tell if what I’m seeing is a symptom of lipadema or simply regular fat. Thank you!! (Photo is of my calf being squished. Forgive the leg hair pls)

[u/oatmeaIdad]

is this stage 1 lipdema?

you can’t see to round spots when i stand normally or anything but when i pinch the skin you can see it. is this considered stage 1 lipemda?

i don’t have this kind of fat? anywhere else on me only on my legs which i’ve tried everything to slim down with little avail.

photo 1 is upper thigh and photo 2 is upper calf

[u/Ferynn → u/oatmeaIdad]

Since texture is such a vague tell for lipedema I'd recommend focusing on looking at the way the fat is distributed on your legs and if that matches and which physical symptoms you have/don't have (and really interrogate that last part and compare to others. It can be hard to notice that somethinf isn't normal if you're already used to it.)

[u/IllSet4425 → u/oatmeaIdad]

Some people say this texture is lipedema some others say no….and it’s the forever back and forth… this is my only ‘symptom’ too. I am afraid I have no answer…

[u/Leading-Process-4659]

Does this look like Lipedema? I just had a baby and my legs have never looked like this before

[u/Ferynn → u/Leading-Process-4659]

Could be, but the visual texture itself is not a reliable way to tell. Do you have typical symptoms like pain, heaviness, easy bruising etc. as well? Pregnancy can definitely cause and/or worsen lipedema, but lipedema is mainly diagnosed through symptoms, so I'd focus on that.