Is Lipedema the reason you can't lose weight? Have you struggled to lose weight? Have you failed miserably regardless of diet, or exercise? Do you have painful, column-shaped legs? Are you a size 8 on top and a 14 on the bottom? Do you feel small nodules in your fatty tissue? Then there’s a chance that your poor attempts to lose weight may not be your fault.
Read on to find out more about Lipedema, a disease of the adipose (fatty) tissue that’s miserably underdiagnosed worldwide. I’ll tell you what to look for and where to get help.
Lipedema is a disease of the fatty tissue. It was discovered in the 1940’s at the Mayo Clinic in the United States. Though it has been known about for roughly seventy to eighty years, it is woefully underdiagnosed and many doctors have never learned about it in their training, making it difficult to diagnose.
It is almost always seen in women with a few known cases of men being diagnosed. It is estimated that 11% of women worldwide are affected. The cause is still unknown. However, it tends to run in families. Is Lipedema the reason you can't lose weight? Keep reading to find out.
1. Weight Gain is Typically Centered around Hormonal Shifts
Most women affected by Lipedema notice that they gain a lot of weight right after puberty, childbirth, or menopause. However, weight can fluctuate during other times.
2. Column Shaped Legs
The legs of a patient with Lipedema will typically resemble columns with the feet being spared. The upper body and torso can have involvement as well. The hands and feet are spared and remain normal. There can be swelling of the hands and feet due to the possibility of secondary Lymphedema, or venous insufficiency.
3. Small Pea-like Nodules
As the disease progresses you will begin to notice small, pea-shaped nodules in the affected areas. They can be felt by palpation. Roll your fingers in a circular motion over the affected areas. You should feel them. They will be solid and firm to the touch.
Unfortunately, minor to severe pain often accompanies Lipedema. Some people are lucky and have no pain. In other cases, it can be debilitating.
5. Decreased Mobility
As your weight begins to increase, your gait and mobility may be affected. It makes walking without falling a full-on science project.
6. Easy Bruisability
Easy bruising caused by fragile vessels is also a common occurrence. The slightest touch or bump and you’ll look like you went three rounds in a cage with Ronda Rousey.
Diagnosis and treatment
If you are lucky enough to live in Germany, diagnosis and treatment won’t be nearly as difficult to obtain. If you live in the United States, Canada, or really anywhere else in the world, diagnosis and treatment won’t be easy to come by. However, it isn’t impossible. Here is a helpful guide to obtaining both.
1. Strap on Your Big Girl Panties and Get Ready for a Fight. It Will Be Anything but Easy
At times you will want to pull your hair out. It’s okay. Take a deep breath, compose yourself and remember that you deserve both. Nothing in life worth having comes easy, and you deserve good health.
2. Start Keeping a Journal of Your Symptoms, if You Have Not Already
It is important to be able to pinpoint when your symptoms began. Keep clear, concise records of what you’ve gone through, what treatments you’ve tried, those that have worked and those that have failed.
3. Keep a Food Journal Too
Some foods, as you’ll begin to notice, will have a positive impact on how you feel, while others will have a negative impact. Ditch those foods that do you harm, regardless of how much you like them. They aren’t worth your health. Here I will say, just use common sense. If it has a bunch of ingredients you can’t pronounce, you probably shouldn’t purchase it. If you already have, ditch it.
4. Develop a Relationship with Your Health Insurance Company
Most health insurers have nurses and health advocates to help you navigate the difficult world of health coverage. Please, do not misunderstand my words here. I said to develop a relationship, not a friendship. Be polite and honest. But remember, insurance companies are in business, and they remain in business by making and saving money. If that means using the policy to deny your claim even though it is much needed and deserved, then they will.
Find out what your insurance covers and what they don’t. Ask them to fax, mail, or email you a copy of their policy. It’ll be a lengthy document. However, it is important that you become familiar with it so that you can get exactly what is due to you.
5. Dr. Karen L. Herbst
If you think you have Lipedema, get to know this woman. She has been our guiding light in America. For a long time she was the only specialist. Visit her website:
Dr. Herbst has dedicated her life's work to figuring out the mystery of us and how to properly treat us. Learn as much as you can. She is located in Tucson, Arizona. If you can get there, do so. Make an appointment as early as you can because the waitlist is pretty lengthy. My next appointment isn’t until May of 2018, and I made it a month ago, in October 2017.
6. MLD, Pneumatic Compression Pumps, Compression Garments, Supplements, Wraps, Diet, and Lymph Sparing Liposuction
All of these things will become a regular part of your life from now on. You will start off with the non-invasive therapies first, depending on how far along you are. First, find a doctor who is familiar with Lipedema, or at least one who is willing to LISTEN and LEARN. Without at least one of those you won’t make it far.
MLD= Manual Lymph Drainage. MLD is performed by a Lymphedema therapist and it will help to keep your lymphatics draining, thus keeping the swelling down.
A Pneumatic compression pump is an expensive, full body pump that aids in moving your lymphatics. Think of it as MLD on steroids. The two recommended by Dr. Herbst are Flexitouch and Lymphapress. I have a Flexitouch. I won’t influence your opinion one way or the other on which you should go with, unless you want my opinion. If you want my opinion on the Flexitouch, please leave a comment and I will respond accordingly.
Compression garments, here, you have a wide variety to choose from. Here, it’ll be a preference, and the same goes for wrapping. Once you have a lymphedema therapist they will measure and order both of them for you. There’s a specific diet by the name of the RAD diet you should also adhere to.
Here is the link lipomadoc.org
If you manage to get an appointment with Dr. Herbst she may suggest you add selenium to your diet. She may also order labs and add some medications. Finally, onto the most invasive, but the most promising treatment - lymph sparing liposuction. In America, liposuction is considered cosmetic, unless you’ve had breast cancer. It is difficult at best to obtain, costing tens of thousands of dollars and insurance companies will fight you until you can prove to them it isn’t experimental. This is the stage I am currently stuck at, fighting my insurance.
Once you get to this step you will wholeheartedly understand why I said you need to put your big girl panties on. For most of us who fight our insurance company the fight is lengthy and exhausting. The burden to prove that the procedure is not experimental, and is medically necessary falls on you entirely. Study hard, learn what you can and prepare. After all, “Chance favors the prepared mind.” Louis Pasteur.
Facebook is a great resource. If you go on Facebook and type Lipedema into the search bar you will find wonderful support groups. My best advice is to surround yourself with people who can understand your struggle. It will be a very difficult battle, even more so alone. So, know that as long as I am alive, you’re NEVER alone.