Health

Can a diet really ease lipoedema? Sunniva’s journey to pain relief and weight loss

Lipoedema is thought to be a common, but little-known disease that mainly affects women.
The disease is painful. Lipoedema is characterized by disproportionate and excess fatty tissue on the thighs and calves, and sometimes on the arms, while the hands and feet are unaffected.
A new doctoral thesis at NTNU investigated the relationship between two different diets and the effect on pain, quality of life, body weight and body composition, appetite and inflammation.

It all started when she was in lower secondary school.

Her thighs, calves and upper arms suddenly began to grow, and she could not understand why it was so painful. It was not until she was over 40 years old that Sunniva Kwapeng was diagnosed with lipoedema.

However, before a correct diagnosis was made, she tried all sorts of diets -- with little success.

A recent NTNU study shows that her experience is quite typical. It is unlikely that the body fat associated with lipoedema can be lost through dieting.

Limited knowledge

"Despite this being a disease that affects many women, little is known about it, which is rather thought-provoking," said Julianne Lundanes, a former PhD candidate at NTNU.

Lipoedema is a poorly understood disease that primarily affects women.

The disease is characterized by disproportionate and excess fatty tissue on the thighs and calves, and sometimes on the arms, while the hands and feet remain unaffected.

Lundanes recently submitted her doctoral thesis at NTNU on the relationship between two different diets and their effects on pain, quality of life, body weight and composition, appetite and inflammation.

Some people also become obese

Lipoedema is painful. It can be painful to move, and it is easy for people with the disease to get caught up in a vicious cycle of inactivity and reduced quality of life. Lipoedema is often mistaken for obesity, but they are two distinct conditions.

If a person with lipoedema loses weight, it is common to see normal fat disappear, such as on the stomach, while the calves and thighs remain the same size. When a person is obese, fat can be stored all over the body, both under the skin and around the internal organs.

In lipoedema, the accumulation of fatty tissue occurs mainly under the skin on the hips, thighs, calves and arms.

The pain associated with the disease can have a significant impact on quality of life, making movement difficult.

"We don't know why the disease is so painful. We believe it involves an inflammatory condition in the fat, and that this is what causes the pain," said Lundanes.

Lipoedema is often hereditary

There are currently no Norwegian national guidelines for the treatment or follow-up of women with lipoedema.

"We also don't know much about why some women develop lipoedema, except that it appears to be hereditary. It is often the case that several people in the same family are affected by it. The disease often manifests during hormonal changes such as puberty, pregnancy and menopause," Lundanes said.

The aim of Lundanes's study was to determine whether a low-carbohydrate diet could serve as an alternative form of treatment for patients with the disease.

She had a sample of 70 women with lipoedema aged 19-73 years old, which was divided into two groups.

One group followed a low-carb diet, while the other followed a low-fat diet. Both groups ate the same number of calories each day, but the amount of carbohydrates and fat varied.

The participants received weekly follow-up for eight weeks and were tested at the beginning and end of the study. Pain and quality of life were measured through a questionnaire.

The results showed clear differences between the two groups.

Similar degrees of inflammation

"The women in the low-carb group had less pain. The participants in the other group did not experience any change in pain, but both groups reported better quality of life," said Lundanes.

Tests were also carried out to see if the reduction in pain was due to the low-carb diet leading to less inflammation in the body. This turned out not to be the case.

"There was no difference in changes in inflammation between the two groups. We also measured inflammation through blood tests, so inflammation in the fatty tissue itself still needs to be investigated in order to draw any conclusions," Lundanes said.

Greater weight loss on the low-carb diet

The women who followed the low-carb diet lost more weight than those who followed the low-fat diet.

"At the end of the study, we found that the women who ate fewer carbohydrates were less hungry than the other group. The feeling of being less hungry is a well-known benefit of low-carb diets once ketosis is achieved. This may have helped these women lose more weight than the other group," Lundanes said.

There is no treatment that can eliminate the causes of or cure lipoedema. There's only treatment that can alleviate some of the symptoms.

Liposuction is one option, but it is currently only offered as part of a research study at Haraldsplass Hospital in Bergen. The only other alternative is to pay for private surgery, and that can cost hundreds of thousands of Norwegian kroner.

"The long-term effects of lipoedema liposuction have still not been fully investigated. There is a lack of research in this area too," Lundanes said.

Compression reduces pain

Most people currently receive help in the form of physical therapy and compression garments that squeeze and support the fatty tissue.

"Compression garments give many people relief," says Lundanes.

For Kwapeng, compression garments have been a great help in managing the pain.

"I've also lost many centimeters on my legs because of the compression garments. My expenses for compression are covered, but in other parts of the country, they're not. It's completely random what kind of help you get," says Kwapeng.

At home, she has a machine that's also used by patients with other conditions. The machine is called a pulsator and is a vacuum treatment for the lymphatic vessels designed to activate the lymphatic system. Lymphatic drainage initiates several cleansing processes in the body and can help improve blood circulation.

The machine is like a giant pair of pants used while lying down.

"It works really well for me. It takes away the pain. I also get more energy. If I have low energy and lie down in it, it's like my body wakes up," says Kwapeng.

Over time, she has learned to live with the disease.

"It's frustrating to have a condition that is so poorly understood. A doctor once told me that at least I won't die from having lipoedema -- but I die a little every time I can't sit on the floor with my daughter. I die a little every time I can't go on a hike I want to take because of the pain. And I die a little every time people think I'm just fat and lazy," Kwapeng said.

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Scientists discover amino acid switch that turns fat into a calorie-burning furnace

Consuming fewer calories is largely accepted as a way to improve health and lose weight, but a recently published study in Nature Metabolism points to a specific sulfur-containing amino acid cysteine as a key component in weight loss. In the study "Cysteine depletion triggers adipose tissue thermogenesis and weight loss," researchers discovered that when study participants restricted their calorie intake, it resulted in reduced levels of cysteine in white fat.

Pennington Biomedical researchers Dr. Eric Ravussin and Dr. Krisztian Stadler contributed to the study in which they and colleagues examined cysteine and discovered that it triggered the transition of white fat cells to brown fat cells, which are a more active form of fat cells that burn energy to produce heat and maintain body temperature. When researchers restricted cysteine in animal models entirely, it drove high levels of weight loss and increased fat burning and browning of fat cells, further demonstrating cysteine's importance in metabolism.

"In addition to the dramatic weight loss and increase in fat burning resulting from the removal of cysteine, the amino acid is also central to redox balance and redox pathways in biology," said Dr. Stadler, who directs the Oxidative Stress and Disease laboratory at Pennington Biomedical. "These results suggest future weight management strategies that might not rely exclusively on reducing caloric intake."

The article is based on results from trials involving both human participants and animal models. For the human trials, researchers examined fat tissue samples taken from trial participants who had actively restricted calorie intake over a year. When examining the fat tissue samples, they looked for changes in the thousands of metabolites, which are compounds formed when the body breaks down food and stores energy. The exploration of these metabolites indicated a reduced level of cysteine.

"Reverse translation of a human caloric restriction trial identified a new player in energy metabolism," said Dr. Ravussin, who holds the Douglas L. Gordon Chair in Diabetes and Metabolism at Pennington Biomedical and oversees its Human Translation Physiology Lab. "Systemic cysteine depletion in mice causes weight loss with increased fat utilization and browning of adipocytes."

The tissue samples came from participants in the CALERIE clinical trial, which recruited healthy young and middle-aged men and women who were instructed to reduce their calorie intake by an average of 14% over two years. With the reduction of cysteine, the participants also experienced subsequent weight loss, improved muscle health, and reduced inflammation.

In the animal models, researchers provided meals with reduced calories. This resulted in a 40% drop in body temperature, but regardless of the cellular stress, the animal models did not exhibit tissue damage, suggesting that protective systems may kick in when cysteine is low.

"Dr. Ravussin, Dr. Stadler, and their colleagues have made a remarkable discovery showing that cysteine regulates the transition from white to brown fat cells, opening new therapeutic avenues for treating obesity," said Dr. John Kirwan, Executive Director of Pennington Biomedical Research Center. "I would like to congratulate this research team on uncovering this important metabolic mechanism that could eventually transform how we approach weight management interventions."

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