LIPEDEMA - The often undiagnosed chronic condition

spicystreak

Hey there! I'm curious to know who in the MFP community has been diagnosed with Lipedema? I am a 60 year old woman and have worked out and/or played sports my whole life. I am a certified trainer, instructor and nutrition coach and have been for 30+ years.

I was recently 'officially' diagnosed with Stage 1 Lipedema (different than lymphedema) and although I guessed I had it, it's been a difficult diagnosis to come to grips with :( It's not just a chronic physical incurable condition, but it impacts people in mental and emotional ways as well. In addition, it's very difficult to find a doctor (even a functional med doctor) who knows what Lipedema is, but studies have shown it impacts 10% of women. However, this 10% are the ones that have been diagnosed correctly, which again, is rare! What about all of the other women being diagnosed with 'obesity,' but it's actually LIPEDEMA!

I'd like to start a chat about it, as I've done deep dive research and I've been talking with 'regular' MDs and functional med MDs about this chronic physical condition; exploring ways we can find more support and encourage insurance companies to cover costs that may be incurred due to struggling with this condition.

Let's chat! I'd love to share more and also hear about your experience with Lipedema. Thanks

SassyAggieMom

Hi There! thank you for bravely posting this! I am 50 and I was just recently told by my gynecologist, as I was in the stirrups, no less, that I have Stage 2-3 Lipedema. I have been a chunky kid since I was 5 years old, I started my period at age 8, but doctors always said "No, her thyroid is within normal ranges". I think the lipedema really started when I was 15-16 years old. I remember my mom (who had svelte, slim legs) saying, " your legs are disgusting, I don't ever want to see you wear shorts again unless you decide to lose weight." Dad called me "thunder thighs", and I just accepted my lot in life.
A few years ago I had tummy tuck and loose skin surgery after losing weight. Even after 100lb weight loss. I still had the fat thighs. The doctor decided to give me bonus liposuction on the inside of my thighs while I was under anesthesia. He ended up damaging the lymph nodes in my leg, so now I have lymphedema, too. I have gained back some weight and struggling to get my thyroid back in track, and my primary care doctor wrote on my chart "Obese due to high calorie intake", without even looking at my Food Diary, my thyroid, etc.
So, you're not alone with the doctors seeming like they don't know anything about it. My Gyn is a DO, and I have found them to be less focused on medications and assumptions. The Gyn said it has to do with my hormones and having an autoimmune disease.
I have painful moments where my legs just hurt immensely.
I did reach a point in my weight loss journey where I did not have the dimpling of fat, my legs were smooth, and just a bit plump. However, I had lost down to an unhealthy weight and has loose skin just hanging off me.
Here's a helpful website:
https://www.lipedema.org/

Reading on this page, I see that it rarely develops in men, but my dad had it. He was close to 500lbs at one point.
My beautiful daughter is only 24, she has it too. She is fit, she works outside at a strenuous job on a farm, she walks up to 10 miles a day, she dances every week, too. She's about 125lbs.

I have been following this Dr on youtube who uses Lymphatic massage and draining.
I have to do this sometimes on the leg with the damages lymph nodes when I have either sat too long or stood all day.
https://www.youtube.com/@doctalksdetox

I also follow this one, but haven't tried her techniques yet:
https://www.youtube.com/@CancerRehabPT

I'm looking at a vibration plate. I've used one a few times and it really helps with circulation.

I hope sharing with you helps you fell less alone. Although, I'm not a certified trainer, instructor or nutrition coach, I have struggled with lipedema most of my life and told it was just because I was fat. And have yoyo-ed from a size 10 to an 18 to a size 6 and back.
It looks like that website has some options in treatments: https://lipedema.squarespace.com/treating-lipedema

If you decide to try any techniques, please feel supported to share.

yakkystuff

Thanks for the shares on this - really something... can see the diagnosis issues there.

stephw5683

Hello Spicystreak,

I have insulin resistance, metabolic syndrome, hashimotos/hypothyroidism and Lipedema, stage 2-3 full body. Even though old studies say it is a disease of the arms and legs they are learning that it can develop everywhere. I found a FB post by accident March 2024 and finally diagnosed myself after 15 years of trying to figure out what was going on with me. Here we are 16 months later and I have done LOTS of deep dives with google and AI, doctors papers and support groups. Being in Canada they do not train that lipedema is a disease. I got a physio to diagnose me and she sent a letter to my GP who knew nothing about the disease. Here I am 2 surgeries later 20L of diseased tissues removed (still recovering). I have my next (probably last) surgery in October. I am starting my focus again today. Putting in my measurements, meal planning and exercise plans once more. I have been doing things, just not keeping a physical record, and this record keeps me accountable. Would love to have a new friend to chat with about diet and exercise as you seem very fit. I am 53 btw. hopefully talk soon. Message me if you want to get into more personal details about surgery or anything instead of a blog thread.

Fuzzipeg

I find it hard, so many women really have a hard time discovering the conditions which plague their lives. Too many like you all are, what I think of as being, gaslighted. I'm sorry you've not found a Functional Doctor. I confronted one of our doctors telling her I had identified this and that, telling her of the positive changes I had experienced, yet, I'm still trying to help myself. I'm 75 and still wondering, I've identified quite a bit though there always seems to be more.

Very best wishes to you all, I hope your friendship can develop further.

Take great are and never, never give up trying to achieve better health.

Fuzzipeg

It was late here in the UK, at the time of my last message.

I did go off and look into Lipedemia and guess what, I think, thanks to spicystreak and each of you who have added before me, I probably have another piece to my puzzle. I found a couple of UK charity sites on Lipedemia, though there seems to be a crossover here with lymphatics. I need to do much more reading.

Its a relief that just maybe in 2025, women's health might just be coming a topic requiring more research.

Please may I have the nerve to tentatively suggest a group be organised simply because this is something which needs to be shared and supported more widely. I count myself out of doing this because I am in research mode, you all know much, much more than I.

Thank you all