January Lifestyle Challenge

By Stefanie Gwinn-Vega and Tatjana van der Krabben

January Lifestyle Challenge (http://www.lipese.com/lifestyle-challenge.html) is about putting more thought than usual into your eating habits. What do you like? Could it be you like it because it’s addictive? Are you (already) enjoying healthy food? Does your mood influence your serving sizes? Do you feel like change? What could you change? It’s about aiming for a healthy lifestyle, not a quick, unhealthy diet program that promises miracles.

Below you find a description of a few popular low-carb diets. They are not specifically designed for people with lipedema, but have gained popularity among women with lipedema. Also, research suggests low-carb is recommended in case of lipedema. Low-carb and no sugar are the elements that keep returning in official lipedema diets. The descriptions of the diets are strictly informative and the menu with each serves as an inspiration or perhaps ‘food for thought’. LIPESE does not endorse a specific diet.

If you feel like getting started and would like some support? On Facebook Lipedema/Lipoedema Group of the United States (private group) and Lipedema Unite (open group) have members looking for "buddies" to take on the challenge together. Not on Facebook and still interested in teaming up with someone? Drop us a line via info@lipese.com . We're happy to help you find a buddy.

South Beach Diet

Phase 1 is designed to stabilize your blood-sugar levels and eliminate cravings for sugary foods and refined starches. This phase is for 14 days.
A sample day would look something like this:

Breakfast
6 oz tomato juice
Scrambled eggs with fresh herbs and mushrooms
2 slices of Canadian bacon
Decaffeinated coffee or tea with nonfat milk and sugar substitute

Midmorning snack
1 part-skim mozzarella cheese stick

Lunch
Chicken Caesar salad (no croutons)

Midafternoon snack
½ cup low-fat cottage cheese / Greek yogurt with added veggies

Dinner
Mahi mahi

Oven-roasted vegetables or salad
2 tbsp balsamic vinaigrette or low-sugar prepared dressing

Dessert
Lemon zest ricotta crème

Phase 2 of South Beach Diet you’ll gradually re-introduce nutritious and delicious foods, including fruits, whole grains and some additional vegetables. A sample day would look like this:

Breakfast
1 cup of fresh strawberries
Oatmeal (1/2 cup old-fashioned oatmeal with walnuts)
Decaffeinated coffee or tea

Midmorning snack
1 hardboiled egg

Lunch
Mediterranean chicken salad

Mid-afternoon snack
Fresh pear with Laughing Cow light cheese

Dinner
Spinach-stuffed salmon
Vegetable medley
Tossed salad (mixed greens, cucumbers, green peppers and cherry tomatoes)
Olive oil and vinegar to taste

Dessert
Chocolate-dipped strawberries

Atkins diet
Phase 1 of the Atkins diet is called Induction – it’s where you’ll jumpstart your weight loss program. The main focus is on proteins, healthy fats and veggies. A sample menu may look something like this:

Breakfast

3 eggs with 4 slices of bacon

Midmorning snack
Sugar free jello

Lunch
Cheeseburger with sauteed mushrooms (no bun)

Midafternoon snack
Atkins Induction phase bar or shake

Dinner
Grilled shrimp and steak
Salad

Dessert
Sugar free jello with whipped cream

You stay in Induction phase until you get closer to your goal weight - which is a rather alien concept for us: "goal weight". Next you move on to phase 2 which promises continued weight loss, but at a slower rate. You van add nuts, berries and yogurt in this phase.
Atkins has a free app for Android or Apple that helps you track your progress, get info on food, has daily meal plans etc. Useful for those who can use a constant reminder.

Wheat belly Diet
There's only one phase and you never begin to add carbs back in as many of the other diets do. The basic permis is to try to maintain a consistant blood-sugar level. There's no calorie counting or restriction and it's basically carbohydrate-based, as carbs are responsible for the sugar highs and lows. A sample day may look like this:

Breakfast
Mexican omlet with sausage, peppers, mushrooms, full fat cheese and salsa
Coffee or tea with heavy cream / half & half

Midmorning snack
Almond flax muffin in a minute

Lunch
Grilles chicken salad with cranberries and walnuts

Midafternoon snack
Greek yogurt with a dozen raspberries

Dinner
Pizza with cheese crust, with whatever topping you desire in meat and veggie category

Dessert
Almond flour chocolate chip cookies

Paleo Diet
There are no phases in this diet as they focus on eating from the foodgroups our hunter-gatherer ancestors would have thrived on during the Paleolithic era, the time period from about 2.6 million years ago to the beginning of the agricultural revolution, about 10,000 years ago. These foods include fresh meats (preferably grass-produced or free-ranging beef, pork, lamb, poultry, and game meat if you can get it), fish, seafood, fresh fruits, vegetables, seeds, nuts and healthy oils (olive, coconut, avocado, macademia, walnut and flaxseed). Dairy products, cereal grains, legumes, refined sugar and processed foods were not part of out ancestral menu. A sample menu looks something like this:

Breakfast
Sweet potato hash with bacon

Midmorning snack
Fruit salad

Lunch
Chicken cutlets with olives and tomatoes

Midafternoon snack
Jerky and fruit

Dinner:
Coconut shrimp and basil spinach

Dessert
Paleo pumpkin muffins

Primal diet
Primal is similar to Paleo diet, but they do differ in certain areas. Primal is lower carb as fruit is limited and more seasonal and even "natural sugar" is frowned upon. Dairy products are more accepted on the Primal plan as well. A sample menu would look something like this:

Breakfast:
Omlet loaded with meats and cheese & coffee with cream

Midmorning snack
Almonds

Lunch
Chef's salad

Midafternoon snack
Avocado

Dinner:
Grilled steak with veggie of your choice & a glass of wine

Dessert
Serving of blue berries in cream

Tim Ferris Four Hour Body Diet
This is considered a slow-carb diet rather than a low-carb diet. The rules are simple: avoid white bread, white rice, potatoes and other white carbs, as well as whole grains and steel-cut oats - which are often promoted as healthy carbs due to their high fiber content. His plan outlaws all fruit and dairy (except cottage cheese which he says speeds up fat loss, while other dairy slows it) and involves a one "all-you-can-eat-day" a week. Anything goes on this prescheduled day (however, I personally  would stay away from wheat and sugar as both cause inflammation). Ferris also suggests eating the same small meals over and over again. A menu could look like this:

Breakfast
Spinach quiche

Midmorning snack
Avocado and nuts

Lunch
Chicken and black bean lettuce wraps

Midafternoon snack
Hard boiled eggs

Dinner
Beaf stew with pinto beans and kale

Dessert
Cottage cheese with cinnamon 

Inflammation Flares Part 2

by Maggie McCarey

LIFE CHOICES THAT STOP INFLAMMATORY FLARES

NUMBER ONE

No processed sugar.

Not even.  Nope.  Nada on a regular basis.  Okay, once in a blue moon.

NUMBER TW0

Drink half your weight in ounces of pure water every day

NUMBER THREE

Have a plan and necessary meds or herbs to act quickly.

The good news is that when it first appears like the cavalry, you can’t mistake it for something else.

Learn how to act quickly to reduce inflammation when you experience an inflammatory trigger like a fall or a shock or an insect bite.  Think of all the home remedies and over the counters you know about. My daughter, Catia, swears by a penny taped on a bee sting remedy because it works for her.  Treating my daughter Stef’s no-see-ums poisoned inflamed upper body a few years ago was not so easy and far more urgent.  Most people get a tiny red mark at the site of a bite.  Stef went into full inflammatory flare within an hour. The inflammation spread quickly throughout her left arm, her upper body, even her eyelids. She knew that the inflammation was caused by histamine, a symptom-causing chemical released by her immune system during an allergic reaction and that she needed a strong anti-histamine to subdue her oh so helpful immune system. She took Zyrtec which reduced the swelling, heat, redness, and pain in her arm and the healing process began.  Lipese need a plan.

Herbs in Ointments, Tinctures, Balms and Teas

One of our lipese on a recent forum shared that her legs ached from humidity and too much standing so she massaged arnica cream on them and the pain improved. Why?  Because arnica root is an anti-inflammatory herb. It’s believed that the plant contains derivatives of thymol, which seems to have anti-inflammatory effects. Herbs are often anti-inflammatory.  That’s how they work.  They reduce chronic swelling.

A small list of Anti-inflammatory Herbs

Turmeric, ginger, guggul, neem, boswellin, holy basil, bromelain, aswagandha, blue vervain, butcher’s broom, calendula (marigold), cat's claw, chamomile, fennel, queen of the meadow, skull-cap, buplerium root, dandelion, rutin, and my favorites: Rosemary, Lavender, Lemon Balm, Raspberry Leaf. 

If you ask me, these four herbs should be in every sauce, gluten free cupcake, meat seasoning, and toothpaste ever made.  I have seen rosemary reverse heart and lung issues. I make burns literally disappear with lavender because a burn makes your skin acidic and lavender turns it back to alkaline. I baked rosemary so often on chicken, my grandson once said to me:  How come you always make me eat these sticks on my food?” An herbalist friend told me a week ago: “Every woman on the planet should take raspberry leaf on a permanent basis.” Lemon balm tea can change a horrid, back-cracking monthly into a pain-free event. 

     

All inflammatory diseases are about how we nourish our bodies. The modern world nourishes with chemicals.  Herbs that detox us from chemicals are essential to recovery.  You can cook with herbs, bathe in them, shampoo your hair with them, and drink them in teas.  They come in gels, oils, and balms. You could literally be healing yourself with  herbs that also improve skin tone. And, they are inexpensive.

 NUMBER FOUR 

Drink Tea Daily to Reduce Chronic Inflammation

Green, White, Oolong, Black is the proper order of most to least effective anti-inflammatory tea.

All teas are not the same. White, green, oolong, and black refer to the leaf at time of harvest and the oxidation process of each tea. Pekoe, for example is a white tea because it is harvested with unopened baby buds, slightly sun baked, and lightly oxidized (bruised).  White is the purest of the teas and I believe, based on aging as deterioration, one of the two best to drink. Green tea is exactly what it means.  The tea plant is harvested when the leaves are at their greenest and at the peak of fullness and medicinal strength.  Green tea is generally not oxidized. It is almost always considered the healthiest of teas with Dr. Mercola, a lone dissenting voice, who is concerned with high levels of fluoride present in green tea.

      

Oolong is tea that is picked while the tea is brownish green, placed in the sun for a short time and then oxidized. Darjeeling is perhaps the best-known oolong tea. Oolong and almond tea is one of my favorite teas. Finally, black tea is made from older brown-to-dead leaves and it is most oxidized. English Breakfast is a black tea blend of usually Assam, Ceylon and Kenyan teas. Earl Gray is a black tea with oil of bergamot added.  Rooibos, South African tea, is technically a member of the legume family and extremely high in flavinoids and antioxidants. It is a fabulous anti-inflammatory.  Any tea is better than no tea, but regarding anti-inflammatory properties, white and green are preferred.

     

A caution: If you open up the bag of a tea that is labeled pure, you will find hard wood like dried shards of tea that can be mixed with anything, including weeds along the road.  When the bag sits in hot water, the mixture inside barely swells to half the size of the bag.  It is probably better that you not drink tea at all than to drink this “pure” potpourri of tea and sprayed weeds.  On the other hand, a good organic tea looks like a rolled leaf, and when placed in a tea strainer will swell four times its size.  Its color will be vibrant, its touch moving from soft white to twiggy black.  This is the tea you want to develop a habit of drinking for the rest of your life.

NUMBER FIVE

A good strong cup of brew? Not.

I love my coffee.  I will die drinking coffee like some really old ladies keep smoking.  But I have to be honest. Yes, coffee has the highest level of antioxidants in the universe (for the first 15 minutes after it is brewed), but it has other issues with recognizable words we coffee-lovers don’t want to hear.  Be brave, dear breve misto venti extra light, extra hot, no sugar Starbuck’s gal.  Read on:

           

“The most potent ingredient in it….is caffeine. This compound is -a -known stimulant. Ingesting stimulants, like caffeine, cause an adrenal response in the body. This response increases cortisol which raises blood pressure and heart rate, as well as interferes with other hormone production in the body. People with elevated cortisol levels produce less DHEA, testosterone, estrogen, progesterone and other hormones that give the body balance at both physical and mental levels. Excess cortisol can suppress the immune system as well. “

Cortisol is that hard to lose belly fat. Sigh.  And it hardens our capillaries.  Diddleydang.

            http://renegadehealth.com/blog/2011/01/31/coffee-does-have-antioxidants

NUMBER SIX

 Mother’s Breath

Continually Exercise Your God Gene

When I went through MDL, I had a wonderful therapist who could tell me when my lymphatic system released and drained.  She could not, however, apply any technique to make it happen.  Sometime during the first few sessions, I realized I was gripping the table like a life raft, my teeth clinched and my breath shallow.  As a part of allowing God rather than fear to be present in me, I began to do the Mother’s breath. The moment I started breathing properly, she jumped back and said, “What did you do?  Your lymph system just turned on like a faucet.”

     

This was great confirmation that I was actually changing my body with this ancient breathing technique.  I explained to her that I often breathe a prayer that I learned from the Sufi’s in Alaska.  They believed this to be the perfect God/child of God breathing pattern.  Seven count in.  Pause for one count.  Seven count out.  Pause one count. Seven count in, etc; for several minutes.  With the 7-1-7-1 cycle, I was encouraged to find seven-syllable mantras that I believe.  In Christ all things are made whole, and I am the oneness of God became the two mantras that I choose between.

     

Now in any situation that I attempt to control my external world out of fear, I do the Mother’s Breath. Because people with lipedema often forget how, and, no, it is not caused by a crushing weight on our chests from obesity, we need to be taught to breathe. The Mother’s breath is one that I use for myself and in healing sessions with others.

     

Every MLD session after that, my therapist said, “ Let me try first. Dang. Okay do that breathing thing you do.”  I breathed my mantra and 7 count.  “There goes the faucet,” she would laugh.

     

So often the lipese bear the weight of others who are also ego-damaged and looking for someone to target, or we take things to heart more than others, or we find out early in life being helpful keeps us safe. But after awhile our lives are so stressful that if we then come upon a real life change, or even a common stress, a worried day over a child, or a late credit card payment, bald tires, a missed appointment, etc. The old legs get tight, indicating that we have unconsciously called for help where we hold stress--in our legs.  That feeling of tightness in your legs? Check it out.  If they are suddenly feeling heavy use the Mother’s Breath.  When you do, the lymph system flows, channels open, toxins  release and you are the Oneness of God in the process of being healed.

Lipedema diets

By Tatjana van der Krabben

Lipedema is not caused by overeating. All the same a diet is mostly recommended. Either because your doctor assumes you’re overeating after all or because of genuine concern the lipedema might cascade. Diets are usually associated with limiting calories. The nasty bit with lipedema is that you can still gain on the areas affected by lipedema despite pretty much starving yourself. Latest insights suggest what you eat is key. This blog touches upon diets and dietary guidelines specifically recommended in case of lipedema by doctors or other experts well informed on lipedema. The trick question is always: will it get me slim ALL OVER, legs included? I’m not giving the following diets a mention for that, since general consensus is that’s not (entirely) possible. The idea is to stop inflammation and further weight gain (and lose a bit if you’re lucky). Many of these diets have a claim related to inflammation. It’s most unlikely that this overview is complete: it’s quite possible other clinics, researchers or doctors have come up with dietary recommendations or a complete program as well.

Probably the most familiar in English speaking parts is the Rare Adipose Disease (RAD) diet. It was developed by dr. Herbst, endocrinologist (University of California, San Diego) and specialized in disorders related to abnormal fat deposits. Its purpose is to reduce inflammation and avoid further weight gain. The essentials are as follows: lower consumption of pasteurized dairy, animal protein, fats, simple sugars, carb, salt and wheat or processed flour products. Focus should be on organic fruits, veg, whole grains and healthy proteins. Foods high in chemicals and additives are also to be avoided. Regular liquid meals are suggested for easy digestion.

Also looked at by lipedema patients is the Diet for Lymphoedema by Juliet George, from the Poppy Lane Lymphoedema Clinic, Australia. It claims to have special focus on stimulating the lymphatic system and the body’s secondary systems with reference to blood circulation and wandering macrophages. This diet does allow for more animal protein as in meat and cottage cheese. Approved food items or ingredients are divided over 2 lists. From the one list you can choose 1 item, from the other 4 to combine all into a meal. This in order to create a 1:4 ratio of acid/alkaline foods.

At the 2012 Nederlandse Lipoedeemdag (Dutch Lipedema Day) the Paleo diet was recommended for lipedema by two researchers (Y. van Stigt  &  H. van Egmond). To state the obvious: the Paleo diet was never specifically designed for lipedema. Paleo, originally promoted by dr. Loren Cordain, blames modern diet for autoimmune disease and encourages people to return to the (unprocessed) food items we used to digest. So, no dairy, grains, processed foods and sugars, legumes, starches or alcohol. But you can have fruits, vegetables, lean meats, seafood, nuts & seeds and healthy fats.  Whether or not lipedema is truly autoimmune is an unanswered question, but the idea to support your immune system through diet is appealing.

Paleo has ways been explained and reinvented in different ways. Some advocates also allow for, for instance, bacon, which doesn’t fall into the lean meat category, or some (raw) dairy. A more well known variation is The Primal Blueprint (Mark Sisson). Guidelines include advice on exercise inspired on cave man lifestyle and getting enough sleep.

I’ve also looked into diet suggestions in Germany. At this point I don’t have much detail. I mostly found a debate on protein: do or don’t? Dr. Weiss, for instance, suggests a complete treatment including a change of diet. It should be limited in both fat and protein, since the lipedema body is already burdened by those. The rest is in a book I don’t have. The Földi Klinik, also informed on lipedema, doesn’t give specifics on their page, but dr. Martin from this clinic explicitly disagrees with that approach on a forum. He insisted the body needs protein. So much for the tip of the German iceberg regarding lipedema diets.

Different diets, different focus and, unfortunately, some contradiction. Yet, the diets I managed to look at in more detail have a few things in common: an aversion to wheat/starchy foods and sugar. They also aim at keeping your blood sugar stable. If you only look at those factors you already get issues with prepackaged off-shelf food, which explains the abundant exchange of recipes on lipedema websites and chat groups.  

None of the diets above were tested on lipedema patients in clinical trials. This blog does not endorse a particular diet, but merely wishes to inform which diets are currently recommended by some medical professionals. Through Lipese we do encourage people with lipedema to put thought into their lifestyle. When continuously gaining, your mobility suffers and literature suggests potentially lower pain levels could be achieved through a change of lifestyle (diet, supplements and exercise). Hence January Lifestyle Challenge (http://www.lipese.com/lifestyle-challenge.html). Starting out can be difficult, but it becomes easier when you know you’re not alone. When considering making a change to your diet, exercise regime and/or considering taking supplements, please contact your healthcare professional first.

The medical information in this blog is provided as an information source only, and is not to be used or relied on for any diagnostic or treatment purposes. This blog should not be used as a substitute for professional diagnosis or treatment. Please consult your healthcare provider before making any healthcare decisions or guidance for a specific medical condition.

Acceptance and Freedom

By Christina Routon

Lose Weight Now! Lose Weight Fast! Lose Weight in Minutes a Day!

It's that time of year again, when the infomercials are in full force and most of us are setting resolutions to lose weight and exercise. Before you buy the next gadget you see on TV, look around your house for a second. Look at the Gazelle or the treadmill you bought. Instead of exercise equipment, it's new function is most likely a clothes hanger. I bet you're still paying the monthly fee for the auto-shipment of vitamins that came with whatever doodad you bought last year, aren't you?

We've all bought products that sound so outrageous (Shake Weight? Butt Toning Sneakers?) just hoping they will be our answer, the absolutely last product we'll ever buy ever again, and we'll have the beautiful, firm, shapely legs and body we've always wanted. But mostly the legs. Please, God, let this doodad give me great legs!

Yes, I've prayed that prayer too, and I've bought several products, diet plans, cookbooks. I've lost weight, but as those of us with lipedema know, we end up with the same legs with little to no changes. It's upsetting, aggravating, frustrating. It make me angry. This leads to giving up, putting the weight back on, then in  January we start all over again. This product will work! I know it will! And we're going around in circles once again.

When I learned I had lipedema this past summer, it was hard. It crushed me. It crushed my hope. Before, I had hope. I hoped in the doodads, in the cookbooks, in the gurus. I was trusting in the things of earth and had been shot down. But now, six months down the road, I have something better than hope for beautiful legs and hot body.

I have freedom.

I know the doodad, gizmo, gadget, whatever won't help my legs. I won't end up with shapely dancer's legs in 8 weeks or 12 weeks just by using whatever. I know this because if two years of going to the gym, taking Zumba classes, squats with the Oly bar, leg presses and walking lunges didn't do it, along with clean* eating and calorie tracking (1500 calories, 100 grams protein, low carb) didn't do it, how on earth is this new doodad going to do it?

Back then, when I was doing all of the above, I didn't know I had lipedema. Now I do. Now I know, and I've accepted that no amount of diet / weight loss / exercise / gizmo is going to affect the lipedema fat.

Again, no amount of diet / weight loss / exercise / new gizmo is going to affect the lipedema fat.

I have railed against that statement. I argued, I denied, I refused to believe it. It had to be wrong. I fought against it because it went against everything I thought I knew and everything I'd come to believe. If I was "good enough", if I didn't cheat on the diet, if I followed that exercise plan or this exercise plan, if I drank that shake or took that shot or bought the latest gizmo THEN I would be okay.

I had to accept it. I had data for two years - weight charts, lifting stats, diet record - and at that moment I knew I HAD done everything "right" according to conventional weight loss guidelines. I had done my best, and if my best hadn't helped me lose more than 30 pounds in 2 years, nothing would.

Because I am not a conventional person who can follow conventional weight loss guidelines.

I have lipedema, and conventional weight loss guidelines don't apply to me.

Accepting this reality has led me to greater freedom than I could ever have imagined. I now train to build strength and endurance. I train to keep my joints lubricated, my lymph flowing, my muscles strong. I eat food to fuel my daily life. My goals aren't tied to a scale and I don't care what anyone thinks about my legs, because my legs aren't me.

And I laugh at the infomercials.

*Clean as I knew it then. Now I eat wheat-free / sugar-free to help reduce inflammation.

Inflammation Flares Part 1

by Maggie McCarey

Looking backward, the first lipese woman I remember was a member of my church.  She was very old and quite plump.  She was also expansive, and a NY kinda storyteller.  Every time I visited her she had a new version of the spider bite that changed her life.  Different angles, once even spider as narrator, but the facts of the story never changed.  She was in her mid-40’s.  She woke up one summer dawn with a spider bite on her leg.  From that moment on, she filled up like a balloon, and no matter how little she ate, the weight just never came off.  Now she went by ambulance several times a year to fight off cellulitis from the lymphedema that started in her legs. Sound familiar to any of you?

 

I have a similar story though my trigger was the death of my best friend.  In the months following her death, I gained significant weight while not eating, I got asthma, and developed panic attacks.   Through the last few years, I have heard many such stories, especially around lipedema knee surgeries, death of loved ones, and sometimes even the slightest injury or insect bite.

 

One woman shared with me that she fell off of the lowest step of a stair in a yarn shop.  This woman was a sharp cookie and had been riding the tail of the fat beast for a long time.  She had undergone by-pass, she knew herbs, she tried any and every diet and she was obese, but she never stopped trying.  She had been doing remarkably well as of late until her fall, which did not in anyway hurt her.  Even so, the next morning, the leg she fell on had begun to grow first 1, then 2, then 3inches.  She could watch it grow before her eyes.  Soon her other leg caught up. She went to her primary who did not distinguish inflammation from leg fat.  Unfortunately, the inflammation spigot was turned on and was not likely to turn itself off.

She and I worked for a year to stop what doctors call an inflammatory cascade without success.  Her story and the stories of many of the rest of us lead me to believe that lipedema is an over-active inflammatory response.  That’s why we all have a different story.  I had leg ringlets at puberty, many of your experienced your first flare with your first pregnancy, or a surgery, or birth control pills, an insect bite, a drug, or, if you were lucky, menopause.  Think back to those silent terrifying days when your brain became a monkey house, weight loss became your obsession, and you turned yourself over to the doctor for your first diet.  Our events are different but this symptom we share.  “Weight gains” often follow a hormonal or chemical trigger that you can actually point to.

The following article written by Caroline J. Cederquist, MD is the best and easiest-to-understand explanation of lipedema and inflammation I have read. Try to wade through it because you will be tested on this information the next time your body does an inflammatory reenactment of the Titanic after a nasty fall, when it gets an itsy-bitsy spider bite, or if it decides to punish you for that nice big bowl of spaghetti you ate for dinner. 

Dr. Cederquist writes:

Fatty tissue is made up of adipose cells, which increase in size but not number as more fuel is presented to the body for storage. These cells produce something called cytokines, small, secreted proteins that among other things, produce and regulate immunities and inflammation. And as adipose cells grow larger, they produce more cytokines, leading to more inflammation.

Not only that, but in amongst the fatty adipose cells are other cells called macrophages, which also produce cytokines. There are normally a few macrophages in the fatty tissue of even slim people, but as people become heavier, gradually at first and then at an increasing rate, the proportion of macrophages in fatty tissue increases.

Now, you wouldn't want to be without macrophages-- these are the immune system's first line of defense, patrolling the body for infection and cleaning up after cells as they naturally die off. So you want-- actually, need--a normal number of these little guys distributed throughout your tissues.

But it turns out that in overweight people, most of the inflammation promoting cytokines in fat are coming not from the adipose cells themselves, but from these macrophages!

The clean-up crew

So what is it that attracts the extra macrophages, with their dangerous cargo of inflammatory cytokines, into the fatty tissue to begin with?

Recall that as people become increasingly overweight, they do not grow more adipose cells; the ones they have simply swell to larger and larger size. Inevitably, some of them become so overburdened that they burst open, leak, or just die. It is the resultant mess of cellular waste that the macrophages come rushing in to clean up, after all, that's their job!

But with that clean-up mission, you get all that excess inflammation that they bring, and you know what that means: more heart disease, more arthritis, more diabetes, more asthma. (http://newsblaze.com/story/20051101224906nnnn.nb/topstory.html)

….MORE LIPEDEMA!!!!!

Now I want to bring all of this information to its simplest denominator…YOU.  Inflammatory cascade should be the most terrifying words on your lipedema vocabulary list at all times because that’s how we gain “inflammatory weight” a.k.a., fat legs, a.k.a., leg pain, a.k.a., fat upper arms, a.k.a. wheel-chair hell, etc.

 If I say bee sting, you say epipen.

 If I say peanut allergy, you say anaphylactic shock treatment.

 If I say choking, you say Heimlich maneuver.

 If I say, accidental fall, you say hunh?

I am pulling in the driveway now: You can be the best dieter on the best diet in the world, you can have liposuction, obesity surgeries, and good medical care,  but if your environment throws you an inflammatory curve ball, you better also have:

1) awareness that an inflammatory flare, your greatest enemy, may be imminent you and that it can undo all of the good work you have been doing for your body in a second;

2) a real understanding of what your body refuses to tolerate—Give It What It Wants.  It Will Not Negotiate 

3) a list of common triggers of an inflammatory flare:

4) an emergency plan that goes something like this: If I say fall out of bed, you say______________; and

5) an alarm going off in your head that puts you in mental recovery mode immediately.

The longer you wait, and depending on the chronic abuse your body is already attempting to subdue-----from every environmental, pharmaceutical, emotional, not-sleeping-enough, working too hard, consuming processed, radiated, glop, job stress, grief, unexpressed rage burning inward lifestyle—the more difficult it becomes to stop an inflammatory cascade. Weeks, months, years, …never. 

Understand when cytokines are released: cytokine production can multiply 1000 fold.  So, while that little argument you had with you boss may have been “ah, no big deal…” the clean up crew, Macrophage 4 U, is doing serious clean up in aisle 12, unleashing  inflammation producing cytokines on top of now-hardening inflammation from the last toxic spill.  (After 3 years of reducing inflammation in my ankles and calves, I have successfully found my way to hard, sclerosis like tissue (old inflammation) at the bottom of all that soft inflammation in my legs.) If that hardened inflammation could talk, I would travel back in time, and rewrite my life story one macrophage clean up event at a time.

SO WHAT’S THE PLAN

Tip #1   Keep your body hydrated. Drink lots of water and lots of green tea.  Treat yourself to Starbucks on the way to work and on the way home.  Trenta size. Or, drink 75 to 100 ounces of pure water a day.

Tip #2  The Mother’s Breathing technique whenever you feel anxious, or argue, or spend too much money, or, or, or.  I will share this technique and other tips in part 2.

Liposuction of arms

By Tatjana van der Krabben

On October 30^th, 2012 I’ve had liposuction on my arms. The purpose for this was the same as for my legs: pain relief from the lipedema and a better lymph flow. I can now look back on a total of 4 procedures and was quite convinced this would be a breeze, it being such a small area by comparison. So far my experience had been the larger the area, the more discomfort. I was wrong. This surgery came with a vengeance. That’s strictly personal: if you ask other lipedema ladies after multiple surgeries which one was the worst, they was all name a different one. So I took my time to see where this was going and wrote this blog a few weeks later than anticipated.

The surgery was no shorter than the other ones I had: a small area also meant continuously working from different angles and switching between different cannulas. This was sculpting all the way. It was quite relaxed: I knew the procedure and the doctor and his assistants were familiar faces by now. There was plenty of time for small talk. Which, in my case, is a lot of talking shop: this man knows stuff about research I love to hear! But I could already tell something was ahead I never experienced the other times. I had to keep my arms in certain raised positions for extended periods of time, which is tough in case of lipedema. I also had trouble lying on my side, on an already by tumescent inflated arm. So afterwards, the first 48 hours or so, I also had sore muscles on top of the surgical pain. I came close to taking the stronger pain medication that was also provided, but I also had an upset stomach. The only stronger pain killer that doesn’t make me ill is ibuprofen and due to its blood thinning properties that’s the one thing I couldn’t take. Tough luck. On day 2 post op I took a shower and gently applied some SLD on the lymph nodes in my arm pits. That was too much: I got sick after all. That set me back in my recovery. Shame.
Yet, at the same time I could tell some things were going really well. I was warned my hands would most likely swell as well and that didn’t happen. The cuts were also looking very decent; no hint of infection. So my body didn’t have all that much trouble coping and only my stomach was out of sync. By day 4 the healing itch came up. Something to dread and welcome. Can’t scratch a tender area like that! At the same time it’s a signal the healing has begun.

After a week the area got tender all over again. I could barely tolerate my compression sleeves, was constantly adjusting them. I checked and the major lymph paths were on overload. I could trace them from my elbows to my armpits, feeling to the touch like electrical wire full of little nodes. If it wasn’t so painful and a sure sign the lymph paths being very unhappy I would call it fascinating. Of course I also had this sort of thing in my legs; hard patches of trapped lymph fluid in need of clearing. You get pumped full of tumescent fluid, wounds always swell and all this has to be transported out.  Not a strong point in case of lipedema. In the legs there was still so much fat left, I couldn’t feel it in such detail. Also, in my legs it didn’t cause these stings and burning sensations that send chills down my spine.

The pain was extremely local: lymph only and pain like it involved nerves. All else was fine. I resorted to SLD 4 times a day. It took a week to see true improvement. By then I could still track the lymph paths, but the additional lumps and bumps were gone. Since it was so local and responding to SLD I wasn’t alarmed. All the signs were good: cuts were healing better than ever, no swelling in hands, annoying itch.  So I continued my SLD routine, ate quite clean (low sugar, low wheat, low additives) and tried my patience. It’s been over 5 weeks now. I can only track parts of my lymph at this point. This will take time, but I’m convinced it will improve matters like with my legs. The band of my wrist watch is feeling more loose. That bit never got ‘sucked’; the surgeon only did my upper arms and a small portion just below the elbow. The general lymph flow is benefitting from the procedure already. This is identical to what I experienced with my lower legs. From my lower legs relatively little was extracted, but they cleaned up best of all areas! Taking bulk away further up the lymph path paid off. Laser has been applied during the procedure to help the skin retract. However,  for a final result I will have to be patient. Even though improvement can very often be detected early, a final result usually takes 6-9 months. It was a bumpy ride, so I took a week before getting back to work. At first no more than 2 hours a day.

I’ve included some pictures to get an idea what it all looked like. These show where I'm coming from:

Next, 4 days post op:

Current state, 5 weeks post op:

Seeing them all together I must say: not bad! My tape measure is a big fat lier!

Living and Dealing with Lipedema

By Christina Routon

Over the years, even before I knew I had lipedema, I've had to make adjustments in how I lived my life. Thinking ahead, the weather, the clothes to wear, would there be a chair I could sit in? Here are a few tips on how I've dealt with my legs.

Tip 1 - Wear knee length or capri length workout shorts / leggings under dresses and skirts to protect skin.

I discovered when I was pregnant that wearing dresses and skirts, even with hose, wasn't going to work with  my legs. The skin on my legs would rub together as I walked and it got so bad, even with hose, I knew I had to find something else to wear. These were the days before Spanx and other types of shapewear, so I found some comfortable workout shorts. I had knee length pair and a capri length that went over my knees, so I could wear them under pretty much anything. Yes, they were hot, especially in the summer and wearing them over hose, but they protected my skin.

Tip 2 - Sideways - sit

I learned this while going to amusement parks and riding the roller coasters. While I technically did fit in the seat, the bar coming down over my legs hurt and pinched, sometimes leaving bruises. What I started doing was getting into the coaster's car, sitting sideways or slinking down just a bit in the seat with my legs straight out in front of me. They would lower the bar and then I would be able to adjust my legs under the bar. It wasn't always comfortable, and I don't know if it compromised safety, but I was able to ride the coaster. Sometimes I still do this at an older movie theater or restaurant booth if the seat is narrow.

Tip 3 - Arrive early to save a seat

No matter where you're going, try to make sure you arrive a few minutes early if possible, especially if you need a seat and don't know what types of seating will be available. If you're going to someone's house, do your best to arrive right on time and scope out a comfortable seat. This could be a large chair, a dining room chair without arms, or a place on the couch. Save the seat with your purse and do whatever you can to keep it as the night goes on. Do your mingling with your friends during the early part of the evening so when you need to rest you'll be able to head right to the seat you've saved.

Tip 4 - Buy the best pair of supportive shoes that you can afford

One of the common physical traits of lipedema are fat pads on the inside portion of our knees. These pads tend to bow our legs in slightly, which affects our gait, and our feet tend to pronate. One way to protect our feet is to buy good, supportive shoes - the best we can afford. By buying good shoes instead of the cheap $10 tennis shoes, we are able to treat our feet better, have less pain and more energy to walk, exercise and go to work. I learned a long time ago the cute shoes would end up doing more harm than good when it comes to my feet. You don't have to buy old-lady shoes or nursing type shoes with a large sole. Just buy the best pair of shoes you possibly can and replace them every six to seven months.

I'm blessed that Lipedema hasn't impacted my mobility to the extent that I need a cane or wheelchair, but these are considerations for other women who deal with this disorder. What are some tips on adjusting your life with lipedema?

I ALMOST FELL OFF MY CHAIR: or, THE MARINE’S HAVE LANDED

By Maggie McCarey

I Googled “lipedema” this week and a few entries down from  #1 Wikipedia was a site for sore eyes.  It was a bonified United States government document on lipedema.  Do you know what this means, Phineaus T.? It means that lipedema has made it to the big top: the National Center for Biotechnology Information at the Department of US National Library of Medicine at the National Institutes of Health.  The document is an article titled Lipedema: a Rare Disease by Bae Wook Shin, M.D., Young-Joo Sim, M.D., Ho Joong Jeong, M.D., and Ghi Chan Kim, M.D, researchers from Korea.  They followed the medical intervention of a 60 year old Korean woman who had shown intermittent symptoms for ten years and then, the last three years before treatment, seemingly unstoppable swelling of the legs, and ultimate diagnosis of lipedema.

        

Dr Shin, et al. made some unprecedented statements about lipedema.  I will try to summarize their findings. [Note that I have quoted much directly from the article Lipedema is a Rare Disease.]

1) Success with complex decongestive therapy, pneumatic compression, and diet modification to reduce swelling in treatment of lipedema is debatable.

            

2) In examining their subject the researchers noted:

                        a. her muscle strength and sensory and muscle stretch reflexes of both the upper and lower extremities were normal

                        b. upon examination, petechiae (purple splotches) were noted in both her lower extremities and a lipoma was observed under the right knee joint. [petechiae is common among viruses carried by insects, disease, and lupus among other causes].

                        c. her greatest response to pain was along the outer thighs [which in sports medicine is called Iliotibial Band Syndrome or inflammation of the IB causing pain on the outside of the knee up the outer thigh and jabbing intermittent pain in the hip.] *I know it well.

            

3)  No abnormalities were noted upon neurological examination.

            

4) Blood tests for diseases of the thyroid gland, heart, and kidney were all normal.            

5) Three-dimensional computed tomography angiography was performed to determine whether the edema was a result of vascular lesions.

                           a. vascular lesions, including deep vein thrombosis, were not observed.                         

                           b. Technetium-99m human serum albumin lymphangiography was  conducted to assess the presence of lymphedema, but there were no abnormalities . [No lymphedema present!]

             

6) Regarding her pain, no abnormalities in the onset latencies and nerve conduction were found and there were no denervation potentials on needle electromyography. 

                            a.  doctors  suspected that her pain was due to serious edema and the increase in subcutaneous tissue rather than an abnormality of the nerve conduction velocity due to peripheral polyneuropathies .

            

7)  Complex decongestive therapy including bandaging was actively performed after the patient's tenderness on pressure was reduced. Upon symptom improvement, dietary modifications were attempted in consultation with a nutritionist in conjunction with an exercise prescription that focused on aerobic exercise.

                              a.  The treatment continued for a month.

                              b. There was no significant change in total weight over the treatment period, but the reduction in edema resulted in decreased circumference of 2.75 cm and 2.45 cm in the right and left lower extremities, respectively. 

CONCLUSIONS:

Other characteristics of lipedema include hematomas or petechiae that can easily arise from a minor shock or slight touch due to the increased fragility of the microvessels.

Serious pain on palpation is relatively common in lipedema compared to lymphedema, and it is rare to find a medical history of cellulitis.

Complex decongestive therapy cannot affect fat tissue, but can contribute to treatment by reducing interstitial  edema.

No bandages should be used until the pain subsides because, unlike lymphedema patients, those with lipedema report pain and hypersensitivity in the edema areas when complex decongestive therapy is performed.

The use of bandages after the pain disappears is helpful in reducing edema.

According to several reports, a reduction in the excessive fatty tissue in lipedema is possible if the compression stockings are worn constantly and if compression bandages are applied at night.

However, continuous treatment is critical because the edema will recur or worsen if complex decongestive therapy is stopped.

It is extremely likely that lipedema can be improved if proper treatment is applied before 35-years-of-age, but delayed management makes the prognosis of lipedema similar to that of lymphedema as the disease progresses to lipolymphedema.

     

The last interesting thing about this article is that many new researchers were named from across numerous disciplines and countries: Weisseleder and Schuchhardt in Germany;  Child, Gordon, Sharpe, Brice, Ostergaard, and Mortimer in England; Pascucci, Lynch, Rudkin, Miller, Macdonald, Sims, and Mayrovitz in America, and Szolnoky, Nagy, Kovacs, Dosa-Racz Szabo, Barsony, Balogh, Kemeny in Hungary [Hungary????**&!], all of whom have produced papers directly addressing lipedema, and all within the last few years.  If you would like read the article for yourself, go to http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3309375/

I could not be happier with the growing awareness of lipedema in the medical community. The time will come soon when our doctors will have to believe us now that even agencies of the federal government have taken up our cause.