TL/DR: Lipedema (or Lipoedema in the UK) is a is a chronic disorder of adipose tissue and lymphatic vessel dysfunction, that affects 11% of women, described as a bilateral, symmetrical, flabby swelling of the legs that arises from deposition of adipose tissue starting at the hips and ending at the ankles and sometimes involving the upper arms. The typical symptoms are a large lower half and column-like legs, which are often tender and bruise easily. For example, the top half of your body may be a size 8, but the bottom half may be a size 16. Lipedema can be mistaken for regular obesity or lymphedema. Dieting and exercising will not reduce the fat involved in lipedema. (1,2)
This is not a fun post for me to write because it gets personal and it's not about kitties. Accepting the diagnosis of lipedema has not been easy for me because there is an annoying voice in the back of my head that keeps telling me that despite everything it is my fault I am overweight, that it is not a disease. It is the voice of every 'health expert' who has ever used the words 'calories in versus calories out' and every doctor who blames overweight people for being too lazy and eating too much.
Yes. I am overweight. I have been pretty much all of my life. I was put on my first diet when I was nine years old and pretty much ever since then there hasn't been a bite of food that didn't go into my mouth without a heaping side of guilt and anguish. Will this food help me be thin? Will that food make me fat? Eating that is bad!!!
Think about that. Well actually, I'm sure there are many of you out there who suffer the same thing. It is a freaking shame that society puts so much pressure on women to take up less and less space in this world that it has come to this, but I digress.
Once I was 100% fully responsible for the food I put in my body I made a conscious effort to not 'diet'. While I was never on a 'diet' it didn't stop me from fat shaming myself over what I ate. My heart breaks for my younger self... If only someone could have told me.
A number of years ago I hit a number on the scale that broke me. I said to myself "okay, fine, what we are doing is not working, let's try this diet thing again" and I did. And I did not lose weight.
So I assumed that I must not have enough discipline / willpower. I decided that I should go on a diet structured by someone else.. I ordered the 6-week body makeover kit and followed it to the letter. Not one scrap of food entered my mouth that wasn't on the program. I lost 20-30lbs fairly quickly and I lost my ability to stand up without becoming light headed. My blood pressure was so low it was getting dangerous. I "gave up" and started eating normally and gained all of the weight back, plus some.
I went back to the 'do it yourself' method. I swapped out my high sugar drinks for zero calorie ones. I bought sugar-free snacks. I watched my portions. I wrote down every single thing I ate (I recently found a food journal I kept from this time and nearly wept) I followed every single piece of nutrition advice out there. I exercised 40+ minutes a day five days a week. I increased my fiber content. I decreased my fat. I increased my healthy fat, I ate more protein, I ate less protein, I ate more salads than I care to think about. I drank nearly a gallon of water a day *sigh*
I started obsessing over calories. Researching health I knew not to go below 1200 calories or I would be starving myself. I KNEW this. I KNEW that for my weight my body needed at least 2000+ calories a day to survive, moving and exercising simply increased my calorie need.. so eating 1500 calories a day SHOULD have caused weight loss. It did not.
I was so frustrated. I tried the 6-week program again (yes, I was that frustrated) and while I lost some, my low blood pressure issues came back quickly and I had to give it up again.
I tried Nutrisystem. I was flippin amazed at how the weight came off and how decent I felt doing it. All in all, I lost nearly 70lbs on it, but once I went under the 200lb mark the weight loss slowed to a crawl. All the conventional advice was that you need to change things up, shock the body, eat less, exercise more, etc.. I tried it all. Slowly, my weight crawled down to 190. The only thing that seemed to help was getting regular massage for the stress I was under. The day I hit 189 on the scale I nearly cried I was so happy.
That was the last day I lost weight.
See, my body had begun to shut down. The restriction of calories, even 1500 calories, was too much. My body decided that extraneous things were no longer necessary; things like thinking or making sure my hands and feet were warm. My body was trying to save itself and as a result, I was cold *all the time*. I was so tired that I could barely make it through a work day of sitting at a computer. I would have to go home and take a nap. Despite all of these warning signs, I still thought it was my fault I was not losing weight. I did not get the message my body was screaming at me. I doubled down on my calorie counting, no bite of food was consumed that wasn't prescribed on the diet. I bought an armband that measured my calorie expenditure for the day (long before Fitbits were a thing) and it measured how I slept at night. My calorie requirements vs my calorie input was at least 500 calories different per a day.. so how was I gaining weight? HOW?!
I went to my doctor. I'm sure she assumed I was lying about my calorie input. She tested my thyroid which was fine.She ran a few other tests, and all came back 'normal' (although later I found out that my testosterone and my progesterone levels were barely above the lowest end of normal - how that was not a red flag I have no idea)
Eventually, I was sent to an endocrinologist who tested my thyroid again, still normal. He told me to have gastric bypass. I fail to see how that would help since I was not eating excessively - I know, I have records.. I'm guessing he thought I was lying too.
I was then sent to another specialist. She ran all the tests all over again. She put me on supplements and protein shakes. She ran a food sensitivity panel that showed I was 'sensitive' to all the foods I was eating. So I went on an elimination diet. Avoiding the foods that I was sensitive to as well as the biggies like gluten, soy, cow dairy, etc. Now wasn't that fun.*headdesk* all this did was give me a raging case of orthorexia where I was frightened to eat anything but kale.
This specialist sent me to an energy guy. I liked the energy guy. He felt I might have an issue with my lymph system and gave me some homeopathic supplements for that. Twice a week I would drive an hour to his office and lay there while they put hands on me and 'tweaked' my... ?? You know, I really don't know what to call it other than 'energy'. I still liked them, though, I felt so relaxed while there. Sadly two red flags went off when I was there that I basically ignored. The first one was when the man who was evaluating me said he thought the weight would just start falling off in a few weeks. um.. kay.. The second was when a woman who I was seeing told me that an ancestor from seven generations back was trying to help me with a lesson... no idea who, but she knew it was from seven generations ago?? Eventually, and by eventually I mean more than six months later, it became obvious that it wasn't helping my weight or much of anything other than I enjoyed laying on the table for an hour, so I stopped.
In the meantime, the specialist suggested I try HCG. HCG is the hormone that is secreted by pregnant women to help them release their stores of fat to protect the baby they are carrying. While you take it you eat 500 calories a day. Someone, please tell me how I can eat 500 calories a day - which, if you took note earlier, means I had a 1500+ calorie deficit a day - and not lose weight.. because that is exactly what happened. Two things happened while I was on this little experiment with my health.. first the nutritionist that was administering the program told me that I should not eat pork because 'pigs don't sweat so there for the meat is toxic' (why I didn't run screaming from the room I have NO idea) and second - and far more importantly - I learned that my intercellular water level and my extracellular water levels were out of wack. See, the nutritionist hooked me up to an electrode that took electrical readings of my body. The only part of the reading she really understood was the bone/fat/water ratios. She could see that x% of my body was fat and x% was lean tissue.. and that was all she cared about. I asked about the cellular levels a couple of times and she had no answer for me other than 'well that's what it is, but it isn't what it should be' She never investigated it, never passed this information on to the doctor that was treating me, never gave me suggestions on how to treat it.. etc. (she also suggested I eat less than 1200 calories a day - she was not the only 'expert' to recommend this to me either)
A final conversation with the specialist doctor, she was pushing me towards a "woo-woo" (her words) lyme expert, because she was sure - despite blood work tests that proved otherwise, and my word that I had never been outside long enough to get a tick on me but once more than a decade before - I had lyme. This time, I insisted that this was not my issue. She basically fired me at that point. I was both scared and relieved.
I was still putting on weight. I was still obsessing over every single calorie. I was still tired, I was still cold. I was miserable. I tried researching what I knew.. why were my cellular water levels out of whack? No one could tell me. Best I could guess was I had lymph issues. I found someone who did lymph massage. I went to them. They said my lymph was 'sluggish' but since I felt no better or worse after my treatment I never pursued it.
I was so sick and tired of fighting my weight. It was a losing battle and I was not enjoying my food. I was still scared to eat anything. I stumbled upon 180degreehealth which changed a lot of how I thought about nutrition. Matt Stone believes that our weight problems come from restricting calories and a lack of nutrition in the foods we are eating. He believes, at least this is my interpretation of his message, if you are eating nutrient dense food most of the time, you can - and should - eat everything you want until you are full. When you are hungry again, eat again. If that is one meal a day, eat one meal a day. If that is 10 meals a day, eat 10 meals a day.. but stop when you are full. I have to say this is a wonderful way to get back into listening to the cues of your body. As someone who was told as a child "you can't possibly be hungry again" I had long since given up listening to the cues of hunger. "Eat Breakfast, it's the most important meal of the day", "Eat every four hours", "Eat every three hours", "Eat every two hours", .. most 'experts' on health will have some say on how frequently you should eat, and almost none of them say 'eat when you are hungry' Why? Why also are we told to drink when we are not thirsty? I tried to follow Matt's advice, even downloading a couple of his books when they were free, but I still had so much 'DON'T EAT THAT!!" mentality going on that it was hard and so I went back to calorie restriction because that is what I knew.
Finally, I gave up. I figured if I was going to gain weight eating 1200 - 1500 calories a day I would gain weight eating 2000 calories a day and I would at least be happy about some part of it. I attempted to eat like a "normal person" (ha ha ha ha ha ha ha ha) and tried not to let the guilt come along with the food. It didn't work as the guilt just seemed to come along for the ride. I kept telling myself it didn't matter; eat nothing but rice cakes and I'd gain weight, or eat this complete and balanced meal and gain weight but feel better.. and eventually I did feel better. I started having enough energy that I didn't need to nap when I got home from work. I started to be not quite so cold.. I had to buy new clothes since I had donated all of my old ones when I lost the weight, but I refused to let the guilt and the shame of that seep too deep into my life. I told myself over and over, this has nothing to do with me. NOTHING. I could not 'eat less and exercise more' this away.. I swear that became my mantra. I started getting really ticked off at people who used those words. They obviously knew nothing about health.. the body is NOT algebra, it is biology.. hormones and other factors play in maintaining good health.
Then one day..
A woman walked up to me in the parking lot of Marden's in Scarborough Maine. It was a horribly awkward conversation because I had no idea what she was trying to say, but she eventually said the word lipedema. I thanked her for telling me and she basically replied, don't.
This started a nearly year-long journey for me to get a diagnosis.
See, I went home and immediately googled it. If I had been in a movie there would have been question marks and exclamation marks going on over my head along with a few symbols to denote curse words. Probably would be some fireworks as well.. I was amazed to see bodies that looked EXACTLY like mine standing up for photos to show themselves off as examples of lipedema. The symptoms, all fit. Well not the pain I told myself, but then I started to think I was getting more and more painful and I had dismissed it as my getting older. I have always had random bruises on my body that I could not account for. I had ALWAYS been larger on the bottom and smaller on the top - cute little short sets never worked for me and don't get me started on bra and panty sets. My hip to waist ratio is ridiculous - by feet.. buying pants is amazingly hard. And this.. this explained to me why getting my blood pressure taken nearly killed me each time it happened. I figured everyone felt that amount of pain I did so I should suck it up and not complain.. I always wondered how I didn't have a blood pressure cuff sized bruise on my arm after it would happen.
So I called my doctor. I said to the receptionist who made my appointment "I want to talk about Lipedema" she said "what?" I repeated myself and made sure she made a note. The receptionist also mentioned I was past due for an annual, I said, sure what the heck let's get it all taken care of at one time. I walk into the appointment - with a young male student there for learning as well - and I ask "So what can you tell me about lipedema?" The blank look on her face was infuriating. She knew nothing about it. She had no idea I wanted to talk about it. The student had never heard of it either. I explained I had made this appointment specifically to talk about it, and I was disappointed that this information hadn't made it to my doctor and she hadn't prepared for my visit. My doctor seemed to dismiss lipedema as one of those 'made up diseases to explain weak willed people', like they used to think of lyme and fibromyalgia, until I told her it was diagnosed at the Mayo Clinic in the 40s. Both my doctor and her student promised to look into it and get back to me with some information. Nothing. I called and asked them to get me to someone who knew anything about it. I received a phone message back saying 'what are you talking about'. I wrote a letter to my doctor imploring her for help.. nothing. I finally called my doctor back again only to find she closed up shop without telling me.
No idea where my records are, no doctor, no help.
My husband brought home a list of doctors in our area that were accepting new patients who took our insurance. Five phone calls down and not one of them accepted new patients, but one was taking on a new doctor and she would be taking new patients as soon as she was accepted by insurance companies.. in a month, two at the most, and 'oh yes, I absolutely will call you to let you know when that happens'.. I called a month later to check.. they were still waiting on approval. Another month later I call back, 'oh her? she left and is setting up shop somewhere else about an hour away.. sorry..'
I obtain a referral from a friend. I call her doctor. They are not accepting new patients at this point either, but in a couple of weeks maybe.. I start to cry and I try to explain why I'm crying. The nice receptionist says that she is sorry (I think she might have thought I was going to harm myself), and will talk to the doctors and someone will get back to me in the upcoming week or two. No one ever calls.
I'm so frustrated at this point I can't even tell you. I just know, KNOW that no matter who I go to they aren't going to know what the heck I am talking about and goodness knows if they are going to care enough to bother to find out. I keep googling lipedema and my state hoping to find someone. I try googling other states in the area. I join support groups that have wonderfully helpful ladies - none of which live in the state I live in. I finally stumble upon someone who has the words therapy and lipedema associated with their name. She is in my state but is up in east nowhere hours away. I give up.
A few weeks later, no closer to help since I still could not find any, I contact this person begging for any help in any way to find someone in my area who might have heard about lipedema. She refers me to a therapy center in Portland that she knows that someone there knows about it. I call them, I beg them for help finding a primary doctor who can refer me to them. I get a name. I call. Yes, they are accepting patients, but new patient visits are six to eight weeks away. *headdesk* I'm nearly crying at this point when the person offers an appointment with a physician's assistant which would be three weeks. Fine, whatever, get me in the door.. please.. and for my sanity would you PLEASE PLEASE write the words "She wants information on lipedema" on the notes..
I get in the door. Guess what happened? Guess. I dare you.
No idea what you are talking about, I'm so sorry that the information didn't get to me. I talk about lipedema as I understand it, I get looked at like I'm making it up. Again, I mention it is a disease that was diagnosed in the 40s by the Mayo Clinic. I mention the therapy center in Portland. I'm told she will talk to the other doctors at the practice and someone will get back to me next week.
Guess what happened..
Yeah, no one got back to me. I started looking for another doctor.
While I was looking I found a youtube video that talked about lipedema. I ended up sharing it with a number of facebook pages for the various clinics and doctors that I had seen in my journey... one of which was my current doctor. A few days later there is a message on my machine asking me to call. All of a sudden, I am getting a referral to an endocrinologist. Fine, great, whatever, whoever, I don't care, just send me to SOMEONE!! Nearly a month goes by and I don't hear anything. I call my doctor back. Turns out the endocrinologist didn't think they could help me, so they rejected the referral and my doctor didn't follow up on it and no one bothered to tell me so I could.
Yes, I actually screamed in frustration. Okay, maybe the scream was just in my head.
I nearly yelled at the woman at the doctor's office. How on earth could they not follow through on this? All I could think of was what if this was a life threatening disease? My doctor's office then referred me to a vascular surgeon. Same thing happened. I called back. I talked about I had already noted where I wanted to be referred - if the vascular place couldn't/wouldn't help me how about sending me to the place I suggested? I get another recommendation.. to a plastic surgeon. Now, one of the treatment options for lipedema is liposuction, but that is so far down the road, and no one in all of New England does the appropriate water assisted lymph sparing treatment, but once again, I don't care, whatever, whoever.. I want a diagnosis by someone who knows what the disease is (or who is willing to learn). I wait.. I hope, never mind, the plastic surgeon won't see me either..
Would you please just send me to the place that referred me to you in the first freakin place?!?!
Hey look, a referral to that place! (yes, it was far more complicated than that, yes it involved several emails and a lot of frustration)
I call that place. I ask if they are familiar with lipedema because you know, by this time so much time has passed I figure there is a chance the person who knew about it might have left. Yes, we know about lipedema.
I have my appointment. I have an evaluation.
I have lipedema.
So now what?
So now I get to cover my hips, thighs, lower legs and upper arms with compression to encourage the lymph fluid back into the lymph system. I have MLD (manual lymph drainage) by a professional a half hour away from my house, twice a week for a few weeks for a couple of months while I learn to do it to myself (which I really suck at) I get to dry brush my skin to encourage healthy lymph flow. Swimming is also quite beneficial to lipedema because it helps with compression (from the water), movement (because the water can take pressure off your joints since fat floats and make it easier to move), and exercise. I try to spend time each day with my legs elevated to help drainage. I am not 'in pain' but I do suffer some discomfort from not only the 'painful fat' but the sheer force of will it takes to move my enlarged body through life. I've also realized that the frequent times that a cat would walk across my body and it felt like they had spikes on the end of their feet is most likely due to the lipedema.
Compression is weird as it makes me feel normal and like a sausage at the same time. The extracellular fluid means that I actually weigh more than you might think at looking at me and that extra weight is draining. I try to keep myself in good enough shape that carrying around all of this extra weight doesn't impact me as much. I am still coming to terms with 'this is not my fault' but it still feels like a cop-out. I am still dragged down each day by what I eat, how much I eat, should I be eating this, maybe I should be eating that, wouldn't it be nice if I could just not eat.. despite the fact that the reality is that unless I'm eating 3000+ calories a day (which I couldn't even imagine doing) what I eat has nothing to do with what size I am. I hope one day to gather up the courage and the insurance approval for water assisted liposuction (WAL) which would help debulk the fat deposits that will not respond to diet and exercise. I'm also going to look into getting a machine that can help do lymph drainage as well.
So that is what has been going on with my life for the past.. what? ten years.. that I haven't talked about. I share all this because there is a serious lack of resources for lipedema patients. There is ONE specialist. ONE. She has a year long waiting list if you want to go and talk to her. There are a handful of doctors who can do WAL and none of them are anywhere near me. Most doctors have no idea this disease even exists and getting them to be open enough to learn it is apparently near impossible - not only from my own experiences but from those members of the support groups I've joined.
According to a study done in Germany, 11% of the population has lipedema.. That is about the same number of people who use Facebook Messenger or people who are veterans, or who develop breast cancer.. and yet so few people have ever heard of it.
But now you have heard of it.
Want to learn more?
- Diagnosis lipedema (youtube video)
- You Mean It's Not My Fault: Lipoedema, a Fat Disorder (youtube video)
My hope is that you share this information with people. Share this post, ask your doctor if they have ever heard about lipedema even if you don't suspect you have it. Talk to a friend. Heck, just say the word out loud once..