The Lymphadema / Lipedema Connection

Many people who suffer from lymphadema may also have a condition called "lipedema" which is deifined in Wikipedia as "a disorder of adipose tissue distinguished by five characteristics: 1) it can be inherited; 2) it occurs almost exclusively in women; 3) it can occur in women of all sizes, from the anorexic to the morbidly obese; 3) it involves the excess deposit and expansion of fat cells in an unusual and particular pattern – bilateral, symmetrical and usually from the waist to a distinct line just above the ankles; and 4) unlike the “normal” fat of obesity, lipedemic fat cannot be lost through diet and exercise.

Lipedema usually is triggered at puberty, but can trigger or worsen during or after pregnancy, at peri-menopause, and following gynecological surgery. If lipedema is diagnosed early, which currently is very rare, it is possible to prevent a significant expansion of lipedemic fat cells, and to alert patients to their heightened risk for obesity so they can take appropriate action.

Estimates of the incidence of lipedema vary widely, and range as high as 11% of the post-puberty female population. Even if the number were only 5%, that would mean more than 6 million women in the United States alone."

The Wikipedia article also goes on to state that "Patients tend to gain weight in lipedemic areas and lose it in non-lipedemic areas. Obese lipedema patients who undergo bariatric surgery lose fat primarily from the waist up. Even anorexic women can starve and exercise away "normal" fat but retain lipedemic fat.

The classic early-stage lipedemic profile is a woman who looks like a size 8 from the waist up and a size 16 from the waist down with disproportionately large, column-like legs. As lipedema progresses, patients become increasingly heavy in the lower body. The additional, expanding fat cells interfere with the pathways of lymphatic vessels, and patients can develop secondary lymphedema, a condition known as lipo-lymphedema. Many lipedema patients cannot tolerate the compression garments associated with conventional lymphedema treatment because the underlying lipedemic fat is very painful, and those patients therefore are at risk for the side effects of uncontrolled lymphedema, including recurring blood infections and fibrosis.

Women with lipedema also are at very high risk for obesity because the lipedemic fat cannot be lost, and because as the condition worsens, patients become progressively less mobile."

Many people who suffer from lipedema may not realize that they have this condition. It is also difficult to get a diagnosis from a medical doctor, as they may not be aware what this condition is, or have little knowlege of it. If you think you have this problem, it might be best to seek out a lymphedema specialist who can help you with diagnosis and treatment options.

The following is an interesting article that ran last summer in the Victoria Times:

Being seriously overweight can be depressing, emotionally upsetting and socially stressful.

It can hurt, too, when a person suffers from a condition called lipedema, also known as painful fat syndrome.

"Lipedema is not related to overeating," stresses Robert Harris, director of this city's Dr. Vodder School, and an expert in fluid retention and acute swelling.

"People can starve themselves, have surgery, take slimming pills and nothing helps," he says of the chronic condition that occurs in females almost exclusively. It is characterized by symmetrical fatty-tissue buildup and swelling, from hips to lower legs.

The syndrome was first identified in 1940 and since then has mostly been studied and written about in Europe, says Harris, whose school is teaching ways to reduce this edema (swelling) through massage and application of strong elastic bandages or garments -- a therapy that began in Germany.

"It is seriously underdiagnosed in North America, but starting to be recognized."

The cause is unclear, and there is no cure for the condition that experts say affects at least one in 2,000. Researchers believe it might be genetically linked, however, with a connection to hormones, microcirculation and inflammation. Harris adds it is different from lymphedema, the swelling complication that can result from cancer surgery, radiation and damage to lymph nodes.

"I have a very deep, achy feeling in my legs," says a 28-year-old Victoria woman who asks not to be identified, but has suffered from severely swollen lower limbs since age 12. "My mother had it, too. I can't stand too long, and it's very sore if someone bumps me or touches my legs."

For years she tried all kinds of slimming programs but to no avail. Then a year ago she was diagnosed with lipedema and discovered the massage therapy that is helping reduce both pain and swelling.

Three world authorities in lipedema management and treatment are in Victoria this week, offering workshops through the Dr. Vodder School to about 50 massage therapists, physiotherapists and health professionals from around North America. On Sunday morning, anyone with the condition can attend a free session at St. Margaret's School auditorium, 1080 Lucas Ave. (For health professionals the cost is $25.)

It starts at 8:30 a.m. with research updates by Dr. Horst Weissleder, professor of radiology at the University of Freiburg, Germany. He has published more than 200 articles about radiology, nuclear medicine and lymphology in international medical journals, and co-authored Lymphedema Diagnosis and Therapy.

After his talk, Angela Vollmer, an expert in fitting compression garments, will discuss lipedema and compression garments.

"This is a very painful condition, and people can diet, diet, diet and it doesn't help," she explains. "Why? Because it is an illness, and not caused by excess calorie consumption. These people need lymph drainage treatment (massage) to remove excess liquid, and compression hose -- either Bermuda or Capri length stockings -- to keep the swelling down. With this treatment they don't see a great reduction in volume, but there is a great decrease in pain and improved quality of life."

The buildup of lymphatic liquid is what creates the pressure and pain, and garments, made of flat-knit material, should be used for compression.

"These new garments do not constrict circulation and distribute even pressure to a large surface.

The wide weave allows air to flow, which makes daily wear more bearable for the patient and there is micromassage through movement, which supports the decongestive therapy," she says.

In recent years, she says, German experts have also developed new liposuction techniques to help dissolve fatty tissue, "and very fine needles to take out the liquid quite easily."

Author Grania Litwin © Times Colonist (Victoria) 2006

The Ledbed Method Helps Lymphadema Sufferers

Here is another article that deals with the excercise program called "The Ledbed Method" I had never heard of it before reading these articles, but it sounds very intriquing - and I'm very impressed that Ms. Flynn sells her jewelry to help lymphadema sufferers purchase compression garments - that's such a wonderful thing to do! This particular article ran in the Pennisula Gateway out of Washington State.

A group of women stand in a circle, blowing bubbles through small, colorful plastic bubble blowers, and giggle. The laughter is just as important in this class as the stretching, toning and dancing that follows.

At first glance, it seems like all fun and games — class instructor Anne Flynn hands out hats and feather boas and leads her students through a series of movements set to fun music. But the class is part of a groundbreaking exercise program called “The Lebed Method,” designed for cancer survivors and patients suffering from lymphedema and chronic illness.

An occupational therapist and lymphedema specialist, Flynn began teaching classes for multiple sclerosis sufferers last October and began implementing her training for cancer patients last month. Flynn said lymphedema is a condition where a person’s lymphatic system has been damaged, especially cancer patients who have been undergoing chemotherapy.

“The lymphatic system rids your system of waste,” Flynn said. “When it gets interrupted, junk stays in there. The excess protein causes the skin to become hard and leathery.”

The condition can also cause painful swelling in limbs or other parts of the body. Special garments designed for the condition are expensive, because they have to be custom-made to fit each individual.

“I originally started the class for MS patients who were telling me that their movement was better and their pain was down,” Flynn said. “There’s so many people with pain, and the people who really feel a decrease in pain is the population that exercises.”

Flynn teaches the Lebed classes at Allenmore Hospital in Tacoma and at the MultiCare Gig Harbor Medical Park on Point Fosdick Drive.

The Lebed program was designed by Sherry Lebed Davis and is recognized by the National Lymphedema Foundation. Lebed was a former dancer and breast cancer survivor from Seattle.

“She couldn’t move her arms and was weak from surgery,” Flynn said. “She found that slow stretches and exercises helped her improve tremendously, so she began setting up classes for other people. She took the program out of the mothballs.”

The Lebed Method has since earned national acclaim and has been featured on TV shows such as “Lifetime” and “The Today Show.”

“The Lebed method is widely known in cancer circles and in other countries,” Flynn said.

“It’s great for patients with lymphedema,” she added. “We focus on lymph-cleaning exercises. It’s a series of slow, steady stretches in a certain order. It’s like traffic on a freeway — you have to clear out one area before you can go down the road. This increases the pumping action of the lymph vessels and helps the flow of (the body’s) waste material.”

Flynn’s students will readily vouch for the wonders of the Lebed method: Laura Justice was diagnosed with MS in 2003 and has participated in the class since it started.

“This is something I look forward to every week,” she said. “Anne really started me moving and kept me moving. Her personality is so great. She makes this class so fun, and she’s fun to be with.”

Justice said the no-stress atmosphere of the class helped her relax and enjoy the exercises.

“She lets me sit in the chair if I’m fatigued,” she said. “She lets me work at my level and come in and do what I can do.”

Flynn said that when she took the Lebed training, she saw it addressed many physical problems.

“For cancer patients, their bodies have been their enemy,” she said. “I help them get back in touch with it in a good way. We have 10-minute water breaks that have turned into a support group. The students interact, but instead of being sad, their endorphins are flowing and they’re upbeat and filled with joy and hope.”

Flynn has a history of nurturing and caring, having worked in nursing homes for 11 years. She began specializing in lymphedema treatment four years ago and decided to augment her therapy with Lebed classes and was pleasantly surprised by the results.

“It’s very rewarding to see people improve so quickly,” she said. “I see results in every patient as long as they stick with it. And you don’t have to be an aerobics instructor to teach this class.”

Flynn’s interest in helping others has gone beyond her classes and into a personal hobby to help lymphedema patients purchase special compression garments. A sock can cost as much as $100 to $150 — a glove as much as $500.

Flynn fashions her own custom jewelry and sells it at the Healthy Reflections Boutique in Gig Harbor. The proceeds from the sales are donated to help patients who can’t afford to purchase the garments.

“A lot of people are without insurance, and elderly people are on a fixed income,” Flynn said.

Her jewelry is made from fine silver, sterling silver, freshwater pearls and handmade glass. Flynn fashions the glass into decorative beads and cooks it in a small kiln at her home.

“You shape the glass with torches and rods,” she said. “It’s a lot of fun. I use whatever colors I feel like using that day and the designs are kind of whimsical. When I work, I’m like a kid in a candy store.”

Reach reporter Susan Schell at 253-853-9240 or by e-mail at susan.schell@gateline.com.

Photo caption: Occupational therapist and lymphedema specialist Anne Flynn displays some of her handcrafted jewelry. Proceeds from the sales help lymphedema patients purchase costly compression garments.

This article appeared in the Orange Country Register Health Column. It's an interesting idea for exercises designed for women recovering from breast cancer and those who may also be suffering from lymphadema that sometimes accompanies breast surgery.

What if I told you blowing bubbles – those kiddie ones that come with a wand in a plastic bottle – should be part of your morning fitness routine?

Or that the same exercises designed to help women recovering from breast cancer will also benefit people with Parkinson's, fibromyalgia, chronic fatigue syndrome, weight control, senior fitness, even pregnant women?

Sherry Lebed Davis created this innovative program for breast cancer survivors and now finds she is a national sensation for general fitness. Her program is taught at hospitals, wellness centers and fitness clubs.

She brings her program to Orange County as part of a three-day seminar for professional trainers Friday-Sunday at the Cordelia Knott Wellness Center in Orange. She'll also appear in two different short segments from 6 to 8 a.m. on KDOC-TV's Daybreak OC on Friday.

Q: Your program has been featured in just about every major publication, from PEOPLE to The New York Times, and on television talk shows and various health conferences. What's going on here?

A: These exercises were developed with my two brothers (Dr. Joel P. Lebed and Dr. Marc R. Lebed for my mom 28 years ago because she had breast cancer and she was depressed. But as the program progressed, it started to be used for people with other illnesses.

There are so many medical studies going on about it – from multiple sclerosis to hospice care, even pool exercises. Who would have thought a program started for mom is now in 14 countries outside the U.S.? I'm pretty proud and amazed and so are my brothers.

Q: You have trainers who teach the program and also a book, "Thriving After Breast Cancer" and a DVD, "The Lebed Method, Focus on Healing." The DVD actually best illustrates your program, I understand, because it focuses on healing dance and movement therapy?

A: Well, it's fun and easy and it also increases flexibility, works on balance, may help reduce lymphedema swelling, helps decrease frozen shoulder. It just has many benefits.

Q: I like the DVD because the people in it are obviously in recovery themselves. You developed lymphedema after you got breast cancer and are shown wearing a compression sleeve. Others are wearing leg compression stockings.

A: I got breast cancer in 1996 and flew more than 300 times before I developed lymphedema. No one told me to wear that preventive sleeve before I flew. But that experience led my brothers and me to design a special program to work with the lymphatic system. The lymphatic system is a major part of the immune system and the exercises, that open the DVD, should be done by everyone.

Q: The book is liberally illustrated with what appear to be simple exercise movements.

A: I was a professional dancer and choreographer. The exercises are very slow and smooth with some resistance. They're fun. In our classes we use props and a lot of fun things.

Q: I assume you encourage people to go to a class before they purchase the book or the DVD?

A: Yes, that's the best way to get involved, of course. But if there's no class available, then the book or DVD will get you going.

Q: Where can we get information on classes and other materials, such as the book?

A: Go to my Web site, www.focusonhealing.net. There is information on teachers nationally. And if someone cannot afford the book or DVD, we do have a nonprofit to help them. It's all on the Web site.

Q: And if I don't want all the goop from blowing bubbles in my house?

A: Blow on a pinwheel instead.

Contact the writer: Jane Glenn Haas jghaas@cox.net

Natural Healing of Lymphadema

For the past few weeks I have been trying a new direction in managing my lymphadema. I have been going to a holisitic practioner for detoxing. I know this isn't everyone's cup of tea, and I respect your right to choose your own treatment, but for me, I want to see if I can find another solution. I'm somewhat nervous to reveal the particulars of the treatment because I'm not sure if it will work - but I'll never know unless I try - and I don't want to hear any criticism about it right now. I'm so fed up with other people telling me what I should be doing when they don't live in my body or my life. I appreciate their "concern" and most of it I know is well-meaning - but isn't the road to hell paved with good intentions and such? Yeah, I thought so.

Anyway, the plan right now is to use the alternative treatments for a time and see how it goes, then perhaps use them in conjuction with leg wrapping. Currently I am not wrapping my legs because I wanted to see if the treatments actually work and although it is happening slowly, I do think it is making some difference, and so does my husband and daughter - so that's some slightly more non-biased opinion. I am going to start keeping a measurment journal so that I will have more concrete evidence - rather than just saying, "It seems to be working." I'll let you know how it goes.

I did want to share this information that I found in the "Complete Encyclopedia of Natural Healing"

Lymphedema is the ongoing, abnormal swelling of an arm or leg (sometimes both legs), and very occasionally other parts of the body, such as the head or intestines. Besides swelling, symptoms can include skin thickening, the leaking of lymphatic fluid when the skin is broken, and bursting pain, where the skin feels like it is about to explode.

Most cases of lymphedema in the U.S. are the direct result of trauma associated with surgical and radiation treatments for breast cancer. Other causes include parasites, automobile accidents, and other physical injury.

The most frequent complication associated with lymphedema is cellulitis, or streptococcal infection of the skin and subcutanous tissue. Patients will run a high fever, the arm or leg will turn red. Other complications include leaking of the lymph fluid, known medically as lymphorrhea; some people leak fluid all the time. Rarely, patients develop malignant tumors in the swollen arm or leg, so called lymph angiosarcoma.

Lymphedema should be treated immediately, as it can be life-threatening. Early indications include tight jewelry and skin that does not lose it's indentation after being squeezed for several seconds.
Treatments
Manual Lymphatic Drainage: This simple method employs light, slow, rhythmic movements to stimulate lymphatic flow. it can be used as a prevenitive measure following a mastectomy, before lymphedema occurs. When used after breast removal surgery, studies show that it can reduce scarring, increase arm mobility, and alleviate pain and uncomfortable sensitivity.

Diet
An abundance of fresh, organic, live foods, such as sprouts, salads, and fresh juices aid detoxification and promote good health. The best foods to eat are complex carbohydrates; animal protein and sodium should be avoided. Green juices such as wheatgrass, celery and parsley, contain chlorophyll which purifies the blood and lymph. Green juices are too strong to be taken alone, however, and should be diluted with other juices and pure water.

Herbs
The following herbs are known for their anti-edema qualities: hyssop, rosemary, black licorice root, astragalus, and dandelion root. Alfalfa, corn silk, juniper berries, lobelia, and pau d'arco are also helpful. Garlic is valuable for it's anitmicrobial and antibiotic properties.
Supplements
Certain nutrients help to cleanse the lymphatic system and move materials through. These include vitamins B1, C and E as well as L-taurine, potassium and raw kidney extract.

Magnets
When properly applied to the affected region, magnets stimulate lymphatic flow. The negative pole is the one used.

Respiration
Breathing deeply is the most cost-effective way to activate stagnant lymph fluid. One technique, recommended by California lymph specialst Dr. William Martin, is the following: Breathe deeply in through the nose and out through the mouth, in cycles of three. With each exhalation, push the air out strongly. The third time, before exhaling, hold the breath as long as possible. While the breath is being held, imagine where the healing breath should go, and mentally direct it to that part of the body.

This excercise opens up lymphatic ducts and speeds lymphatic flow. It also releases pain, because pain can come from a lack of oxygen at the cellular level. A word of caution: Never hold in air to the point of stress, and stop to rest if this causes dizziness.

Other ways to improve respiration include light bouncing on a small trampoline, while breathing deeply, as well as bio-oxidative therapies, which empliy ozone or oxygen. Aerobic excercises prompt lymphatic drainage, and sweating removes toxins from tissues.

Minimizing Symptoms
Heat should be avoided, as it causes the body to produce more lymphatic fluid. This means no hot showers, hot tubs, or saunas. Wear long sleeves and hats to avoid sun exposure.

To minimize the chance of skin cuts, gloves should be worn when gardening. Electric razors, rather than manual ones provide less chance of cutting the skin.

Patients are urged to avoid strenuous excercise and lifting heavy objects.

Women who wear a breast prosthesis should find the lightest one possible, and bra straps should be padded. Whenever possible, bras should not be worn as they restrict lymphatic flow.

Skin and nail care should be meticulous to avoid infections, and patients should avoid going to manicurists who use their intruments on other patrons.

Patients must avoid injections to affected areas or to the arm nearest where the breast cancer was. They must avoid having a doctor take blook or blood pressure readings from that arm, nor should they receive chemotherapy in that arm.

Mosquito bites can lead to serious infections and must be avoided.

Maintaining a normal weight minimizes symptomatology.

If airplane travel is neccessary, the arm or leg should be wrapped and elevated before takeoff. Preparation for travel includes taking extra garlic and other natural antibacterials.

What to Avoid
The most detrimental foods contain salt, sugar, and caffeine. It is also important to stay away from processed foods and artificial chemicals.
From The Complete Encyclopedia of Natual Healing, p.252-254

A Creative Therapy for Lymphadema

From the Vanderbilt-Ingram Cancer Center comes this interesting information about using creative writing as therapy for lymphadema. This sounds like a very worthy avenue to explore to help people suffering from lymphadema.

by Kathy Rivers

Thanks to a three-year grant from the American Cancer Society, Sheila Ridner, Ph.D., R.N., assistant professor of Nursing at the Vanderbilt University School of Nursing, and Ingrid Mayer, M.D., assistant Professor of Medicine at the Vanderbilt-Ingram Cancer Center, are testing expressive writing as a way to help alleviate some physical and psychological consequences of stage 2 lymphedema in breast cancer survivors.

“This is an important problem, and it’s not going away,” said Ridner. “We have a higher percentage of survivors, which means this is an issue we need to address.”

Lymphedema can also be a serious problem for survivors of prostate cancer, ovarian cancer and melanomas. Hallmarks of stage 2 in breast cancer survivors include constant swelling, physical changes in the limb and, often, a harder and larger affected area.

Despite massage therapy designed to temporarily move fluid through the lymph system, this is a chronic condition that causes discomfort and emotional distress. Typical treatment does not involve psychological interventions.

Ridner and her team are studying, in a randomized, clinical trial, the impact of expressive writing, an activity that she says is very different than keeping a journal or blogging.

Expressive writing is dose-limited to 20-minute sessions, four times during a two-week period. A majority of the subjects participate from home using their own computers, but a few have opted to use traditional pen and paper. Participants share their personal experiences or detail living with lymphedema.

Participants receive an initial physical exam of the arm, symptom assessment, and a volume measurement of their arm.

Assessments are repeated after one, three and six months to gauge any changes.

“Our goal is to give these patients a voice, ” said Ridner. “Losing function in an arm or a leg is not acceptable, particularly among young people, and we want to change attitudes among health care professionals so that just surviving is no longer a good enough outcome.”

The study has recruited 48 of its needed 90 participants so far, and word is spreading. Despite having a requirement that subjects live within a 90-mile radius, the research team has had calls from interested survivors from Georgia, Florida, Ohio, Colorado, and Indiana. Those involved in the study receive incremental compensation.

They either visit Vanderbilt or are seen in their homes for their initial meeting and complete the remainder of the study from their homes.

Big Lue Needs Help

This article was in the Belize Newspaper "The Reporter" please contact them for more information or with any questions you have about the following story:

“I need the surgery ,so I can work and to help save my Life.”- says 630 pound north side Belize City resident Lewelyn Meighan.

People all over the world are constantly battling with weight issues. Llewelyn “Big Lue” Meighan, 29, is also a member of that club.

Weighing in at 630 lbs, Meighan, a former tourguide bus driver needs to take two surgeries in Guatemala, and desperately needs assistance.

Meighan, a resident of 18 Castle Street weighed 425 lbs in 2006, but his weight has ballooned to 630 lbs. He needs a gastric by-pass surgery as well as another surgery to remove the lymphedema from both his legs, and is humbly appealing to the general public for assistance.

He told the Reporter, “I need to get the surgery so I could get my life back together.” He continued,” any assistance will be appreciated, nothing is too small or too large. After the surgery I will be able to walk as a normal man,” he exclaimed.

His extreme weight and the complications caused by Lymph-edema has left him unable to work, because he is unable to walk, and he has to be confined to his home. He is unable to provide for himself because he has no income, and he said he is surviving with the assistance of his neighbours and his brother that help from time to time.

Meighan told the Reporter that in 2006 he had enrolled in nutritionist’s, Karen Rosito Program for Health & Fitness. At that time he weighed 425 pounds but was unable to keep up with the program because of his work schedule.

Rosito confirmed to the Reporter that for a very brief time she had worked with him. “He has a lot of water tension. The first surgery he should do the Balloon surgery,” said Rosito.

The appeal for help may sound trite, but this young man is appealing to the general public for financial assistance especially from business, hospitals and doctors.

He can be reached by phone at 605-6615, or direct contributions to his account at the Holy Redeemer Credit Union, number 47675.

Last Updated ( Friday, 01 February 2008 )