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  #1   ^
Old Thu, Jan-06-22, 11:52
bkloots's Avatar
bkloots bkloots is offline
Posts: 10,072
 
Plan: LC/HiProtein
Stats: 195/154/150 Female 63in
BF:
Progress: 91%
Location: Kansas City, MO
Default Do I have lipedema?

After a lifetime of obsessing about my fat thighs--forever disproportionate to the rest of my body at any weight--I've just read an interesting discussion on Diet Doctor of an actual disease condition: Lipedema (lipoedema for you Brits).

Here's the link, which may be behind a paywall. Sorry. Lipedema

Of course, I've read about lipedema before now. But lately it seems to have come under additional medical investigation. Seems that my pear-shaped female body isn't simply an inherited appearance; it may also be an inherited disease. Like my Grandma Rachel. But not my mother or my sisters.

Mine is not an extreme case, and not seriously progressive. But then, I've been on one diet or another since I was seventeen years old. At seventy-five, the fat I've observed since infancy still sits on my thighs and butt. In fact, the SIX pounds I dropped this week--after holiday indulgence in sugar and alcohol--suggests that a great deal of my weight is in the amount of water sucked up (temporarily) by the fat in those thighs, destined to be stubbornly unresponsive to diet and exercise.

When I crossed the finish line of a marathon (yes, all 26+ miles) at the age of 33, I was skinny all over--except in my thighs. That was some exercise regime, I'll tell you.

Other evidence is suggestive: I do not have any symptoms of so-called metabolic syndrome (often effectively addressed by Low-carb diet). I do not have high blood pressure. I do take medication for hypothyroid. Also, the fat on those thighs is "painful" when pressed hard.

Come to think of it, my new leggings might be so comfortable partly because they provide a light but therapeutic compression. Who knew??

In my reading so far, I don't see much in the way of medical intervention. But according to my experience over the past two decades, I absolutely endorse the low-carbohydrate--and even more, ketogenic--way of eating as a way of diminishing the symptoms and progress of lipedema.

If you've got that Pear-shaped problem, you might want to look into the research, and have a conversation with your medical provider. It might not bring much hope for the thin thighs you've always envied, but it may keep you on the helpful path provided by low-carbohydrate eating.

Happy new year!

Last edited by bkloots : Thu, Jan-06-22 at 12:25.
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  #2   ^
Old Thu, Jan-06-22, 12:55
Nancy LC's Avatar
Nancy LC Nancy LC is offline
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Plan: DDF
Stats: 202/185.4/179 Female 67
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Location: San Diego, CA
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Yeah, I definitely have it, but not severely. My Mom did too. I didn't find that keto resolved anything, but I can imagine that high carbs would've made it worse.
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  #3   ^
Old Thu, Jan-06-22, 18:05
Kristine's Avatar
Kristine Kristine is offline
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Plan: Primal/P:E
Stats: 171/155/155 Female 5'7"
BF:
Progress: 100%
Location: Southern Ontario, Canada
Default

Siobhan Huggins, who works with Dave Feldman in the citizen science/lipidology realm, has lipedema. She's looking fabulous, though, and has had a lot of success with what I think is a mostly carnivore/high fat approach. Check out her before/after pics.

She did a really nice presentation on lipedema back in the summer, but I don't have a link. It's probably behind a paywall by now; it was one of those online conferences.

It would be great if, like in her case, more patients got diagnosed at a young age rather than once it's too late to avoid the progression.

That whole twitter thread, BTW, is wholesome content. Dr Tro started it soliciting success stories with before/after pics.
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  #4   ^
Old Sat, Jan-08-22, 04:35
Benay's Avatar
Benay Benay is offline
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Posts: 875
 
Plan: Protein Power/Atkins
Stats: 250/174/175 Female 5 feet 6 inches
BF:
Progress: 101%
Location: Prescott, Arizona, USA
Default

I too have fat thighs as did my thin mother. Major issue is with slacks that get all nobbly as my thighs rub against each other as I walk. I have always just assumed it was genetic. Weight loss or gain makes no difference
I too have circulation issues with my thighs and have to massage them periodically to get the blood moving again - a painful process.
Interesting thread
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  #5   ^
Old Sat, Jan-08-22, 07:43
Kristine's Avatar
Kristine Kristine is offline
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Posts: 23,686
 
Plan: Primal/P:E
Stats: 171/155/155 Female 5'7"
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Progress: 100%
Location: Southern Ontario, Canada
Default

More from Siobhan: Why Keto For Lipedema? Possible Mechanisms and Insights

Quote:
Siobhan explained that there’s a misconception that, because there is not currently a cure for the condition, there’s nothing one can do about it.

“That’s just not true,” said Siobhan. “There are physical therapies that you can do, including compression therapy and anti-fibrosis therapy, and lymphatic massage. And there’s also mental health therapies that you can get in case you’re struggling with the chronic disease aspect. There’s also a supportive community that can help people feel more connected and less alone. And of course other people with similar experiences can help answer common questions.

Siobhan explained that she was not diagnosed with lipedema until after she had lost 80 pounds on a ketogenic diet, and she was really not familiar with lipedema before her diagnosis.

“The only reason I was even diagnosed was because people who had it reached out to me and asked if I might have it based off of pictures that I had posted on Twitter.”
Hey, sometimes social media isn't a complete hell scape.

This part is heartbreaking and relatable, though not quite related to lipedema:

Quote:
“My diary entries from 10-11 were filled with self loathing, comments about needing to eat less, being hungry, and calling myself fat,” she wrote in a subsequent tweet. “By 15, the depression was full blown.”

She stopped participating in physical education class, saying she was ashamed of how she looked when she moved. “I was constantly angry,” she recalled. When she was 14 she went vegetarian for a year, but failed to lose any weight.

By the time she was 18, the 5’2” Siobhan weighed 240 pounds, and her total cholesterol was above 300 with an HDL of 33. “The doctor berated me, and I cried after the appointment.”

Siobhan said she often thought of the heart attack her dad had suffered when she was eight years old. Although Siobhan’s view of heart disease (and obesity) has greatly changed and no longer sees it this way, she commented on her perspective at the time: “Although he survived, it instilled in me a fear of my own body. Like it was something that would kill me for my gluttony.”

She exercised more and calorie restricted, starting with 1200 calories per day. “The hunger was immense,” she recalled. “Along with the hunger, I experienced mood swings, irritability, and low energy.”

Early in 2016, she started restricting even more, opting for low fat, low calorie foods. With great difficulty, she managed to reduce her weight to 220 pounds, but her depression was worse than ever.

“At one point, I was eating like 800 calories a day, and not only is that not sustainable, it wasn’t very effective, but it was not as if I wasn’t complying.”

One day, while discussing her struggles with her mom, the topic of the ketogenic diet came up. Siobhan’s mom gave her a magazine article on the subject.

“I was skeptical, but my mom is one of the smartest people I know, so I agreed to look into it. On August 12, 2016 I decided to try it.”

The rest is a success story.
Quote:
Two months in, Siobhan recalled a moment in which she was standing in a parking lot, in which she realized she was experiencing an unfamiliar feeling.

“It took a moment but I realized I was content for the first time since I was a child. My depression had finally eased and I did not hate myself or my life.

Bold mine. I really admire this young lady, and I'm happy for her success.

Last edited by Kristine : Sat, Jan-08-22 at 07:49.
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  #6   ^
Old Sat, Jan-08-22, 11:29
bkloots's Avatar
bkloots bkloots is offline
Posts: 10,072
 
Plan: LC/HiProtein
Stats: 195/154/150 Female 63in
BF:
Progress: 91%
Location: Kansas City, MO
Default

Thanks, Kristine, for sharing some excerpts from this heartbreaking--but ultimately upbeat--story. On this site, we can easily imagine the multitudes who have suffered the scorn of being "fat" when it really, truly is not their fault.

"Thunder thighs" isn't a nice nickname to live with. Besides making it almost impossible to find pants that fit. Now I know the condition goes beyond a "weight problem" or simply a hereditary shape. I've done my best to fix what I could and reconcile myself to what it is. I have never lacked for love, or for other ways to embrace my best self.

Fatness in America is wicked paradox: it seems to be endemic and increasing, but is still subject to extreme social rejection--unless you manage to become a Pop Star. Crazy.
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  #7   ^
Old Sat, Jan-08-22, 11:56
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Benay Benay is offline
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Posts: 875
 
Plan: Protein Power/Atkins
Stats: 250/174/175 Female 5 feet 6 inches
BF:
Progress: 101%
Location: Prescott, Arizona, USA
Default

I once had a wonderful book I lent to a friend who never returned it. It was all about finding the right clothing for your body type.
The Pear (me-small breasted, small waist, large hips and thighs), the H (shoulders, hips and waist the same size), the hour glass, the large bosom with small hips, etc. So women with large hips and thighs is just part of who we are.It is not a disease.
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  #8   ^
Old Sat, Jan-08-22, 13:05
Zuleikaa Zuleikaa is offline
Finding the Pieces
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Plan: Mishmash
Stats: 365/320.0/160 Female 67
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Location: Maryland, US
Default I Have Lipedema

I have lipedema. I was always a chubby child and a carb addict but my lipedema blew up with the onset of puberty. At the onset of puberty, I became obese.

Year after year doctor after doctor told me I was just fat and needed to lose weight. I was even put in the hospital for a special weight loss program for two months; I lost 15 pounds. I could always lose 15 pounds on any diet. And over the years I went on many, many diets to lose weight and many, many times I would lose weight only to gain it back and more every time.

Even being young I knew something was wrong with me. My mother, my father, and all my siblings were slim, not only slim but thin. My sisters had no butts and no hips and small breasts. Well, I had one sister who had hips and a butt but she was a size 8-10 where the rest of my sisters were size 6 and below; at 12 I was a size 14. I was not only fat but I had no ankles and what I call jodhpur thighs. My bottom was always 2-3 sizes larger than my top; wearing dresses, unless full skirted was impossible; pants with regular waistbands was impossible. No cute shoes with straps for me.

Being obese at such a young age caused me to be withdrawn and antisocial; my refuge became books. I had an eclectic taste in books; being so isolated and with plenty of alone time to read I would read anything printed, including medical texts. Always looking for the next diet I read plenty of diet books and books on nutrition, herbals, and on medical conditions as well.

To make a long story short I diagnosed myself with lipedema at 15; I was diagnosed by the medical profession at 52. Every time I presented my medically researched evidence of lipedema to doctors, I was poo-pooed and told I just needed to lose weight. At 52 I had to go to urgent care because my legs so swollen, taut, and were leaking fluid after a prolonged plane ride. The doctor walked in took a look at my legs and said, “Oh, you have lymphedema.” That was it.

I discovered low-carb at 17 and went on a carbohydrate restricted diet. I lost the weight and maintained the loss for 5 years. My bottom became only 1 size larger than my top but I still could not wear ankle strap shoes. And then I got married and became pregnant. I argued and argued with my obstetrician and dietician that I had to restrict my carbs and maintain my weight during pregnancy. They argued that I was damaging my baby and that I needed more carbs to have a healthy baby. I conceded; agreed to add additional carbs. I immediately started blowing up my weight and once again my carb addiction was off and running; I gained 45 pounds during the last 5 months of pregnancy; my lipedema worsened; my hips and thighs expanded. My obstetrician was horrified but, at that point, the damage was done.

Years later I discovered the Carbohydrate Addict Diet; lost the weight again and maintained again for years. Then as the years passed my SAD increase. I have SAD (Seasonal Affective Disorder); it too came with the onslaught of puberty and becomes worse every year. Through my research over the years, I’ve learned that puberty, pregnancy, SAD/depression and indeed many traumas all cause hormonal shifts; all affect the brain and body composition; all can impact whether and when your lipedema switch is flipped.

What causes lipedema? JMO. After years of research, I’ve concluded that lymphedema is caused by a confluence of many factors: heredity, hormones, excess carbohydrates, and trauma. The trauma may be mental or physical, an accident/operation, or just the natural progressions in life such as puberty, pregnancy, or menopause. My older sister with the fuller figure got the lipedema shape during menopause; her daughter got full lipedema after her second pregnancy. My daughter got obese after her second pregnancy but she doesn’t have lipedema; my youngest granddaughter got heavier in her hips and thighs and maybe has lipedema after getting Depo Provera.

What is lipedema? People with lipedema usually have damaged lymph and circulatory systems . The lymph system helps the body eliminate wastes such as dead cells and toxins from the body. Lipedema is comprised of protein strands binding water and trapping these eliminated elements. Lipedema is not fat and therefore cannot really be dieted away.

Can lipedema be cured? Generally, the medical profession says no. I say lipedema can be greatly ameliorated by the use of low carb, herbal supplements, exercise, and the use of compression garments. Protein strands forming the lymphedema shape can be dissolved by use of The Fat Flush Plan or by taking serrapeptase supplements. Fat Flush was how I first lost my jodhpur thighs and second butt; I peed 15 pounds and 2 hips sizes off overnight. Serrapeptase was how I lost them again and keep them from reforming. Serrapeptase dissolves excess protein in the body, thus it dissolves those lipedemic protein strands and keeps them from reforming. Herbal supplements support the lymph, elimination systems, and circulation. Compression garments and regular exercise such as walking and swimming help the circulation and lymph systems eliminate excess fluid/toxins so they don’t further exacerbate your condition.

Last edited by Zuleikaa : Sun, Jan-09-22 at 09:52.
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  #9   ^
Old Sat, Jan-08-22, 13:12
Zuleikaa Zuleikaa is offline
Finding the Pieces
Posts: 16,964
 
Plan: Mishmash
Stats: 365/320.0/160 Female 67
BF:
Progress: 22%
Location: Maryland, US
Default

Quote:
Originally Posted by Benay
I once had a wonderful book I lent to a friend who never returned it. It was all about finding the right clothing for your body type.
The Pear (me-small breasted, small waist, large hips and thighs), the H (shoulders, hips and waist the same size), the hour glass, the large bosom with small hips, etc. So women with large hips and thighs is just part of who we are.It is not a disease.

But it can be.

Take a look:
https://www.lipedema.org/staging
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  #10   ^
Old Sat, Jan-08-22, 18:32
bkloots's Avatar
bkloots bkloots is offline
Posts: 10,072
 
Plan: LC/HiProtein
Stats: 195/154/150 Female 63in
BF:
Progress: 91%
Location: Kansas City, MO
Default

Thank you, Zuleikaa, for sharing your story and providing these resources. It's amazing that research and treatment for lipedema/lymphedema are so inadequate this late in the day.

Perhaps this is further evidence of ignorance and discrimination in the matter of nutrition and weight management. Because "eat less, move more" has been the "answer" to everything forever.
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  #11   ^
Old Tue, Jan-11-22, 17:09
rightnow's Avatar
rightnow rightnow is online now
Every moment is NOW.
Posts: 22,650
 
Plan: LC (ketogenic)
Stats: 520/381/280 Female 66 inches
BF: Why yes it is.
Progress: 58%
Location: Ozarks USA
Default

Siobhan's story sounds a lot like my daughter's. When she was 15, in her helpess rage about her thighs, she CARVED -- yes, with a knife -- the word "FAT" into her thigh. (She has a scar -- the word fat, forever on her thigh. OMG.) The psychological consequence of feeling like you are cursed is bad at any age but at that age, in that way, it's pretty horrible indeed.

PJ
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  #12   ^
Old Wed, Jan-12-22, 07:01
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WereBear WereBear is offline
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Plan: Epi-Paleo/IF
Stats: 220/125/150 Female 67
BF:
Progress: 136%
Location: USA
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Quote:
Siobhan explained that there’s a misconception that, because there is not currently a cure for the condition, there’s nothing one can do about it.


This was the exact excuse for the US health insurance refusing to pay for the diagnosis of my own rare, but IWASRIGHT genetic condition. "Nothing can be done about it." Yes, there can, but you refuse to pay for it.

I wonder if that's a factor. You can't just give me or Siobhan or Zuleikaa a pill and we go away with our symptoms suppressed, like so many other chronic illnesses. We get no help at all.

It infuriates me when I run across a supplement or therapeutic strategy buried in the depths of the internet which works for people like me. And no one even KNOWS about it!

Infuriating.

Quote:
Originally Posted by Zuleikaa
To make a long story short I diagnosed myself with lipedema at 15; I was diagnosed by the medical profession at 52. Every time I presented my medically researched evidence of lipedema to doctors, I was poo-pooed and told I just needed to lose weight. At 52 I had to go to urgent care because my legs so swollen, taut, and were leaking fluid after a prolonged plane ride. The doctor walked in took a look at my legs and said, “Oh, you have lymphedema.”
That was it.



Quote:
Originally Posted by rightnow
The psychological consequence of feeling like you are cursed is bad at any age but at that age, in that way, it's pretty horrible indeed.

PJ


SO many of us suffered in those formative years. It's really amazing. Means our own era would look like "all leeches all the time" to our descendants
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  #13   ^
Old Sat, Mar-19-22, 07:22
JEY100's Avatar
JEY100 JEY100 is offline
Posts: 12,199
 
Plan: P:E/DDF
Stats: 225/150/169 Female 5' 9"
BF:45%/27%/25%
Progress: 134%
Location: NC
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By following all the podcasts with Dr Ted Naiman, I have found a new (to me) health podcaster in New Zealand. As I listen to some of her previous episodes, there is a great one with Leslyn Keith, who started in the Lymphedema treatment community years ago. She has so much knowledge …. also of Lipedema and lower leg edema..and many resources for diet and exercise to help. The podcaster is an older woman with years of experience, a refreshing change from the young male bodybuilders I follow

https://www.susanbirch.co.nz/2021/1...h-leslyn-keith/

Quote:
Leslyn Keith Resources

Website: https://www.leslynkeith.com/

Links to books as PDF downloads:

The Lymphatic Code
https://www.leslynkeith.com/lymphatic-code.html

The Ketogenic Solution for Lymphatic Disorders
https://www.leslynkeith.com/diet-lymphedema.html

Print editions (from Compression Guru):
https://www.compressionguru.com/

Lymphatic Lifestyle Solutions online program:
https://self-care-therapy.mykajabi....estylesolutions

Lipedema Resources:
The Lipedema Project – https://lipedemaproject.org/
Lipedema Simplified – https://lipedema-simplified.org/

Articles of Interest
Insulin resistance and breast cancer treatment-related lymphedema –
https://pubmed.ncbi.nlm.nih.gov/33761281/
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  #14   ^
Old Sat, Mar-19-22, 07:44
cotonpal's Avatar
cotonpal cotonpal is offline
Posts: 5,033
 
Plan: very low carb real food
Stats: 245/125/135 Female 62
BF:
Progress: 109%
Location: Vermont
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Quote:
Originally Posted by JEY100
The podcaster is an older woman with years of experience, a refreshing change from the young male bodybuilders I follow

https://www.susanbirch.co.nz/2021/1...h-leslyn-keith/


I have found myself not wanting to listen to another young body builder, displaying his or her body. I just don't find myself interested in anything they might happen to say. My interest is in keeping my 73 year old body as healthy as possible. I neither want or expect to get my body into any shape where I would want to display it unclothed.
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  #15   ^
Old Sun, Mar-20-22, 09:56
Nancy LC's Avatar
Nancy LC Nancy LC is offline
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Plan: DDF
Stats: 202/185.4/179 Female 67
BF:
Progress: 72%
Location: San Diego, CA
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Me too, Jean! Any time I've tried to follow advice from a bodybuilder it never worked. I'll stick to following advice from my fellow crones (crone in the best sense of the word, wise, older and female).
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