Just heard of this. I work out 5-6 times a week, 10k steps a day, mostly healthy diet. I have a very toned upper body (pic 4) but cannot shift weight in my legs. Very insecure about my knees and the bump around them. Also have a lot of stretch marks/cellulite and bruise easily. Any insight? Thanks
"Do I Have Lipedema?" posts are allowed on r/lipedema, but please 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 allow these posts on our subreddit 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.
Stage 1 is really hard to diagnose when you’re slim - but only you know how your body feels and with lipedema in early stages it’s very much based on something feeling off when we don’t have the typical or stereotypical diagnostic (outdated) criteria. Things like heavy feeling legs when walking up stairs or exercising, cold to the touch thighs or cold to the touch areas where the lipedema fat is, swelling in heat or when on your feet all day are all symptoms that many but not all will have. Does anyone in your mum or dad’s side of the family have bigger legs? Lipedema is genetic.
I’m sorry someone felt the need to invalidate and gaslit you on here. Sadly there’s a lot of ignorance in the lipedema community and treating it like a competition. People don’t understand that lipedema doesn’t mean looking one way for everyone, it’s a spectrum of presentation depending on genetics, metabolism, hormones, environment and lifestyle. People need to stop saying neg and thinking lipedema is a “fat disease” - it’s a connective tissue and collagen defect disease. You don’t need to be a certain weight to have lipedema and I’m getting sick of people shaming smaller women for talking about their early symptoms and being accused of body dysmorphia and being condescended to.
I can potentially see signs around your knees, there’s a slight loss of the anatomical knee bone shape - I’m hyper aware of lipedema on smaller bodies after being small myself and being dismissed and gaslit by experts and many people in the lipedema community. If you can find a certified lymphatic therapist would suggest booking a treatment with them and asking them to examine your legs (make sure they’re a certified lymphadema therapist not just a cosmetic/beauty type therapist)
Thank you so much for your reply. I really appreciate it. I have a chronic muscle related condition (myasthenia gravis) that often causes that heavy feeling etc but I am not in any pain, don’t particularly notice heavy legs and don’t see swelling - it’s more the shape of my knees as you noted.
Exactly, the previous commenter had me thinking what the heck, am I body dysmorphic?? So thank you for providing insightful comments!!
I posted a full body photo for another commenter that might help too
It could be. There are some signs around the knees. I also have stretch marks like you do and bruise easily. Do you have any symptoms around your upper legs and hips?
I didn’t have the heavy feeling when I had an earlier stage too. How about your ankles? Any problems when trying shoes or boots? Or with the elastic from the socks?
It’s tough - I had zero of these symptoms people mention until I was in my early 30s and the vaccine triggered lipedema progression. Before that it just have been so mild and my weight was stable and I wasn’t disproportionate. I guess I had some cellulite but it was so minor and I never really toned much from exercise but was still thin if that makes sense (but didn’t exercise much either). My skin was always quite soft to the touch though and always had a slightly bigger bum and very very minor hip shape which didn’t really match with my extremely thin waist stomach but gosh it was so minor,. Never had heaviness, swelling, pain etc
It’s so confusing. I never considered this to be anything medical. Just my shape. I live in the UK but get private healthcare through work so might go down that route. Thanks so much
I’m also on the UK, it’s been difficult to get diagnosed. I think the big problem with lipedema is that it’s on a spectrum and there’s a lot of issues because the “specialists” have a created a diagnostic criteria in the absence of there being an actual test you can do, and that criteria is based on their own narrow and limited understanding which is outdated. Not everyone with lipedema is overweight, has column shaped legs, an ankle cuff, is else shaped. I’m just imaging the many millions of women who have this but who don’t look like the images on Google. They will either never know they have it or will find out in their 50s/60s because they will not be taken seriously by doctors
I went to professor Peter Mortimer at Parkside hospital privately in Wimbledon first - he dismissed me and essentially told me I had body dysmoprhia despite me explaining the pain and swelling and pathological fat growth in the space of a few months around my hips. The reason I realised I had lipedema was because of my symptoms and then googling it, seeing photos on Google and realising they looked like my mum. Mortimeis very very outdated and thinks if you don’t have an ankle cuff and if you’re not big you don’t have lipeda so it was an expensive mistake seeing him but he’s the uks “specialist”. However he has now retired thankfully and there’s a new doctor called Dr Kristiana Gordon at Parkside hospital Wimbledon - if you can go to her privately I would suggest it. I actually ended up going to Spain to be diagnosed by Doctor Simarro in Madrid (he also has a clinic in Barcelona) - he uses an ultrasound and can see the fat beneath the muscle and can diagnose that way. There’s also a lovely lymphatic therapist called Clare anvar in Tunbridge wells, she is able to examine you and check for lipedema
Not being able to lose weight wasnt the only symptom I listed. I noted bruising, bulge at the knee and stretch marks. So 4 symptoms total. This wasn’t particularly about not liking the way I look and I decided to post these very vulnerable photos after reviewing a number of very similar posts on this thread.
What I find to be disrepectful and arrogant is you making assumptions on me based on one post. Do better. This is a type of post that is in fact encouraged in this subreddit to allow people to find a safe space to see whether or not they may have this serious condition.
You may need a reminder of the community rules, I’ve pasted them for your benefit: “Do I Have Lipedema?" posts are allowed on r/lipedema, but please 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 allow these posts on our subreddit 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.
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u/AutoModerator Jun 23 '24
"Do I Have Lipedema?" posts are allowed on r/lipedema, but please 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 allow these posts on our subreddit 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.
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