This is the first entry of a blog entitled Our Lipedema Stories. Nearly three years ago, I created a website entitled bigfatlegs.com to communicate with other lipedema sufferers. The site has grown from a few hundred hits a month to nearly 8,000 hits a month. Every week a person contacts me desperate to find information and medical help for herself or her loved ones.
I have been thinking lately that we need to have a blog page. There are so many things we sufferers know about out illness or we would know if we compared notes. When I talk to other lipedema women, I find in our shared horrifying reality much commonality. Number one without exception: we have very few medical professionals who know about lipedema and a lot more who refuse to learn. I would like to share my most recent experience with you regarding that dangerous lack medical of knowledge.
About eight years ago, I was getting into a bathtub and noticed that my feet up to about mid-calf were red and stayed red. My heart lurched. I had noticed this symptom before but always after a shower so I blamed it on shower heat. Through the past eight years, this condition has remained unchanged–though the red socks appear and disappear at random.
Fast forward to yesterday evening. I am a pastor in upstate New York. Our church shares a common meal every Wednesday night. One of the guys came up to me after dinner and said, “Remember Tonya? She died this morning. I don’t know what could have killed her. When I dated her she was healthy except that her legs were red up to about her calf.”
Of course, I knew Tonya. She was heavy, ostricized, and frustrated. “What happened, Dennis?”
“Well, she went to the ER four times last night. Her left leg was swelling and getting a rash. Her temperature climbed too. Three times the ER sent her home. The fourth time they kept her. She died this morning.”
Immediately I knew that she had died from sepsis. Lipedema sufferers must be aware of the possibility of infection in their legs. This emergency situation is comparable to a diabetic going into insulin shock. The only difference? ER staff are trained to recognize insulin shock; they are not even psychologically trained to provide medical care for lipedema women. So, Tonya was sent home. How many times had she sought medical attention, complaining of pain all over her body? How many times had she been tested and nothing was found to warrant her pain? How many times did a doctor say: “You have fibromyalgia.”
I went home last night and instructed my husband and daughter. ” If these symptoms occur, explain to the doctors that I have cellulitis. Fight for me.”
This morning I received a call from the funeral home. The family requested that I do Tonya’s funeral. She will be the second lipedema sufferer I have seen die from lipedema complications this year. Tonya was thirty-two years old but she looked much older as if she had born the weight of shame and rejection all of her life. Go figger!
So my question to you is this: are those red socks we get common to all of us? Do we add this to our list of symptoms?
We are uniting at last, Maggie
Our Lipedema Stories Blog 
I am Maggies mother. never would I have dreamed there would be a genitic gene in our family that would cause so much heartache, ridicule from strangers who stare at the heavy legs. MY youngest daughter in her 4o’s has it badly not as bad as Maggie but enough to be socially punished my people. One of her customers in her beauty shop the other day made what I would call a snyde remark about her gaining so much weight since she had last seen her. Don’t know how long it was between seeing her again. Wouldn’t you believe anyone with average intelligence would not have made such a such a dastard remark. I see these professional people, the hollywood crowd get in the shows and talk shows and some look anerrexious with a short short dress looking like a night gown, sit on the chair facing the audience with their legs crossed their skirt length barley covering and they leave one thigh hanging out trying to impress who? The host the TV audience? Society has so numbed our gals and ladies they think everyone is itching to see their bare legs the breasts hardly inside the top of the dress, bare arms if and a skimpy top. Here is the male host sitting there old fashioned dressed in his long sleeved shirt, suit, tie looking like a gentleman. It seems they want all the young girls to believe everyone could like a size 1o
or should. But, do you know God made us all different or we would have to wear name tags.
then these blessed gals that have an inherited problem are suposed to feel totally bad if they can’t look like them. If people would realize when your legs are red and look like fluid in them that you could have a health problem. Maggies father has the legs with the red in them, conjestive heart failure and heavy legs etc. He is now walking with a walker and using a wheel chair if he has to go every far. We are thinking he inherited from his grandmothers side on the Reynolds and Martin. His father had an aunt and other relative that I remember years ago seeing and hearing them talk about her heavy legs. I remeber as a child hearing the people talk about dropsey. With congestive heart failure you can get the swollen leg also.
We read and posted your writing. Stef thought it was so good, she called Catia to read it. Thats what I want–real people talking from their hearts!
My name is Jennie. I’ve been reading a lot about Lipodema in the past few weeks. I have always had big legs and thick ankles, and lived my life in pants generally. I’ve wondered why it hurt so much when my small cat would jump onto my lap, whereas no-one else in the family complained of pain when the cat jumped up on them! We tend to think that what we feel is what everyone feels. I finally went to see someone about this, a physiotherapist who is experienced with Manual Lymph Drainage, and she diagnosed me with Lipodema. So finally I have a label! I am experimenting with dietry changes and mild exercise.
The thing I’d like to share is the extreme psychological impact this condition has had upon me. I can remember feeling different even as a very young child. My legs were thick even then, and I can remember being heartbroken after telling a little friend I’d like to join her ballet class. I loved the idea of twirling in a tuttu, and flitting around on my toes. She said, “oh, you can’t join our group, you don’t have the right legs”. Children can be so cruel. I was probably only about seven at the time. I remember wishing that I could go to bed at night, and say a prayer, or make a wish, and I would wake up the next day with thin ankles and normal legs.
My condition worsened at puberty. Going to school was a nightmare. I hated wearing school uniform. We had to wear knee high long white socks, which just accentuated the awfulness. The fashion was miniskirts, and all my friends hitched their uniforms up a few inches. I tried the same thing, and was approached by a ring-leader of the other girls, and told flatly “Don’t hitch your skirt up, you don’t have the legs for that, and we don’t want to have to look at you”. “Tree Trunks” is such a nasty nickname.
After this, I knew I was ugly, unacceptable and I became deeply ashamed and embarrassed. After year 10 in high school, at age 15 , I was able to wear pants and so that helped greatly. However, there were always sport-related activities to avoid, especially being in a swimming costume.
I thought I would never find a boyfriend who would want me for myself. It’s not too strong to call how I felt about myself, “self-loathing”. Interestingly my parents never discussed this issue with me, but occasionally there might be an indirect rude comment from them. It was like the elephant in the kitchen.
At age 18 I had zero self esteem. I was terrified someone would notice my ankles, or that I’d be put in a situation where I would have to be exposed. I decided to embark on a process of starving myself, believing that it would make my legs thinner. I got so thin, my ribs stuck out. I had coffee for breakfast, coffee for lunch, with a small snack bar or an apple, and I picked at the dinner my mother prepared at the end of the day.
At 19, I got glandular fever which progressed to pnuemonia and I was admitted to hospital. I remember laying there in hospital and a nurse telling me off for crossing my legs at the ankles. She must have thought I was a fat person, as my body was covered and just my legs were sticking out.
After being ill for three months, I finally began to climb out of the pit. I left home shortly after that, and looking back, I realise that my parents’ fixation with perfection, neatness and order, was involved in how I felt about myself. I knew I failed to meet their criteria for acceptability.
I ended up living 500 miles away from them and as I started to live my own life, I began to heal emotionally a little, though I could never envisage what I could or should be in life. I eventually met my husband and did have children, two sons. However, because I felt so weird and different with my huge legs, I ate for comfort which did nothing to help the situation.
I’ve had to put up with ridicule from family members, and doctors who accused me of not trying to loose weight. I’ve had several attempts to loose weight, but the weight never came off my thighs, knees, calves and ankles. I wanted to wear things that were fashionable, but they either would not fit, or they looked ridiculous. I’d have to settle for baggy jeans or trousers.
I used to fantasise that I could time travel and go back to the 1800’s and wear big, full length skirts, and then I could look gracious and fashionable. My legs would just be hidden away and the standards of the day would encourage that. It’s like dying a little, everyday, to live like this in a society that applauds long, slim legs and shapely calves and ankles. I’ve ranted at God, and hated other women who had the ideal shape and flaunted it.
I’m now moving into a new season, one where I am learning to accept who I am. I’m learning that appearances are not everything, and that what really counts is the heart of a person. I’m trying to be thankful everyday, even for my legs. Instead of saying “I hate my legs” I am trying to say “I love my legs” and to both speak and think kindly of myself. I’ve come through other difficult experiences, having a disabled child and having a life threatening disease at age 40. My legs have been there all through my life, carrying me, supporting me through all the experiences of life, good and bad. They were there with me when I twirled trying to be a prima donna in the kitchen at seven years of age, they were there with me when I blushed and died inside as a teenager, and they were there when I was almost anorexic. They carried me down the aisle on my wedding day. They supported me when I bore my two sons. They’ve taken me overseas to see the delights of Paris and London. They were with me in the oncology department of the hospital when I fought for my life.
I’m 50 now, and I want to say one thing…. thank you God for life, and thank you, legs, for supporting me throughout that life. I’m learning to embrace my life with joy, courage and acceptance.
This is a personal email I received so her name is withheld. Maggie
Hello,
I came across your website tonight and I have not stopped crying. I have a very big story but don’t want to bore you too much, please be patient with me I really need too talk to someone who understands.
I have never been diagnosed with lipedema. I have been told since puberty I have big bones and have inherited my grandmothers and great mothers fat legs. I was told to go on diets even though the only fat part of me back then was my legs. This dieting led to yo yo dieting since age 13 years. I have gone from 60 kgs to 130+ kgs in stages over 30 years. I gain 20 kgs, lose 20 kgs, then gain 30 then lose 20, then gain 40, lose 20, then gain 65 lose 55 (did this now 3 times). Every time my legs get bigger and uglier when I gain the weight again. Today I’m back up there again around the 120kg with my legs looking bigger than they did in 2005 when I was 12 kgs more.
I have had 2 lap bands. One in 2006 I was 132 got down to 65kg but then band slipped and was replaced was a defective band. During the following years of filling the band my weight increased quickly. My body so used to eating almost nothing and now able to eat normal because band was not restricting. My surgeon after 9 months of adding fluid slowly to my band and seeing no weight loss results only gains gave up on me. I found out another year later from a different surgeon I had esophageal dilatation/dysmotility. Seems the first band caused this problem and having another band was never going to work. I can’t begin to tell you the rejection I have felt my whole life and especially after that experience. Today I am at my final stage of getting a gastric sleeve as a final resort to control this yo-yoing with weight and I’m terrified at what I’m contemplating and to be honest I have grave reservations.
I guess if I knew what my problem was from age 13 I may have avoided this terrible path and the isolation and psychological suffering I’ve had to endure as being seen as a fat legs freak. I have never once in Australia met another person who had this problem. No doctor I’ve been too has even mentioned the word lipodema when I complain of severe pain in lower back and legs, buttocks which gets more crippling the heavier I get. I’ve been told instead it’ probably arthritis of some sort and I need to go on a diet. The worse of it is I now have a 13 year old daughter who shows signs of this problem in her thighs and like me at 13, has same characteristic ankles and column legs. Even my 10 year old son appears he has it.
My tears tonight were of relief I found some one (you) who is a sufferer and who is working so hard to bring this out to the public. I came across a yahoo forum and saw my lipodema sisters and their photo’s and it broke my heart. Tears well up in my eyes thinking about them. It’s hard enough being an overweight person but to be an overweight person without hope of ever achieving a normal body no matter how much weight one loses is a sense of hopelessness only us sufferers can understand.
I have prayed for 30 years begging God to help me and though I feel somewhat relieved finally to know the truth, I also am angry it took so long for my daily pleading prayer to be answered. My faith has taken a beating, I haven’t gone to church since the weight started creeping again. Just the shame of everyone seeing me and secretly judging me as a weak glutton. I can’t begin to tell you of the psychological impact this has had through out my life and poor choices I made due to this low self image of myself.
I would like to meet other people like me, I’m tired of people looking at my legs and ankles and mocking me. I also know it’s probably too late for me but whatever I can do for the next generation especially my children who I don’t want to see travel down this very lonely and isolating road,I am more than willing to do. I just don’t know how to start.
I live in Perth Western Australia and I don’t believe we have any specialists in Lipodema. I mean if every doctor you’ve ever seen does not know, what hope have you to being referred to someone appropriate? If there is no pitting there’s no hope but I pray I’m wrong. Today I can barely walk, the pain in my feet is incredible, I have what I think are heel spurs in left foot and it appears to be developing in right also. I cant walk upright for several minutes, when I get out of bed or off a chair. I cant have bare feet touch the ground without my homy ped shoes on. I can’t get a proper sleep ever, I’ve been an insomniac for years. I have severe tenderness all over my body (my arms, all through out back, especially lower spine and buttocks and my legs, that some days the slightest of brushes sends me screaming. Every so often I experience what feels like fluid in the tops of my feet/ankle swishing around when I walk then it disappears, this has just started up last couple of years, not a chronic condition yet.
The full body tenderness does sound like fibromyaglia I guess, In fact a rheumatologist thought it was more likely to be ankylosing spondylitis. I’ve seen a few of them over the years, after all the tests coming out clear and no definite diagnosis I walk away to deal with the pain alone, till someone say’s “try another one” or “get another second opinion”. The fact is no one has yet been able to help me either way. My kids already have the tenderness in lower back and buttocks and thighs (these are the only locations so far)
I feel so so sad that a lot of my childhood and adult dreams were affected by this deformity. I was a talented singer and had great opportunities in my youth but I was so self conscious of my weight fluctuations and hideous lower legs I often avoided doing the thing I loved most as I allowed the fear of mocking and judgement from others to keep me from achieving my dreams.
Shame has always been my middle name. I’ve never ever worn jeans or pants only long skirts down to ankles. Always been too self conscious of people looking at the circumference of my huge lumpy legs, mostly to avoid the emotions I feel when people cruelly point and stare, I seem to have an antenna regarding this, I sense who is and always appear spot on. I know there are always people worse than me regarding obesity but the lipodema made me feel like an alien especially the skinnier I got and more disproportionate the legs got. I have never been able to accept myself and have suffered periods of deep depression now twice and so today I fear of it returning also.
Anyway that’s a snapshot of my life, thank god for the unconditional love of my children. My heart breaks for my kids who are already being teased, bullied and rejected at their school for their cankles. Both of them suffer low self esteem already, I feel totally hopeless to be able to ease their suffering. Nothing I say can change what they feel and what they see in the mirror, even though they don’t have it severe. Instead I am blamed for their terrible inheritance and I totally understand how they feel, I blamed my fore mothers also.I want to see the curse end, no parent wants to see their kids suffer as we did. Any information on this disease and management is more than welcome. I look forward to hearing from you soon.
Godbless
My reply: Maggie
Hi N.
Be assured that I have read every word you wrote and I have carried your pain with me the last few days. It is mind-blowing on so many levels to read your diagnosis online and I am sorry that is the only way most of us find out about it. Levels of shock and disbelief. That is the way I found mine–a blog from a woman who prayed she had lymphedema but finally had to admit that she had lipedema. I read then the symptoms of the disease. I like you am a poster child. There was no doubt that I had lipedema
For two years, my mind reeled with the impossibility that I have an AMA gosh darned bonified disease and that the disease has been identified since 1941 (Ten years before every cruel and ignorant doctor I have seen over fifty years shamed and humiliated me for being a lazy self-indulging liar about my food intake).
Then I became excited because while not curable it surely must be treatable. But, no apparently when you tell doctors about lipedema, they look at you as if you will go to any length to cover up your addictive calorie intake including making up a disease they haven’t heard of or care to check out. The next thought for me was to get this information to DR. Oz, Oprah, Dr Guipta, Dr. Phil, my congresswoman..any one who would cry the alarm that millions MILLIONS of women have a disease that doctors are making worse with their obesity surgeries, thousand calorie, low fat diets, ect. BUT THESE FOLKS JUST KEEP GIVING THE SAME BAD ADVISE TO US AND MAKING US FEEL LIKE FAILURES WHEN WE DO THEIR PROTOCOL. I am ssoooooo resentful every time I hear some famous host gives dieting advise. ALl of their advice exacerbates our illness.
LET ME SPEAK CLEARLY N. No elective, non-threatening surgery is to be performed on lipedema women and I will tell you why by example. Five years ago, I have a gallbladder surgery-laperscopic–and immediately where the tiny incision went into my stomach a lump the size of an egg appeared and remains there to this day. When I had knee surgery–meniscus one-day surgery–a few days after I came home my right leg became twisted and deformed. Anyone guessing would assume I mangled my leg in an accident. Last year, I figured out how to reduce the lymphedema around my deformed leg and discovered under the water my ankles have patches of hardened adipose. That ankle feels like marble or granite with skin over it. Why? I don’t know because no one has researched it. As a disease it should make any researcher happy; it has got to be one of the most hideous failures of the body in human history. I suspect no one has become interested, not because a cure would not be lucrative, but because it is a disease of cultural shame–fat women in pain–boohoo.. And it sucks as you know–really sucks that we are blamed for this exquisitely complicated malfunction even as we are deprived of all social acceptance, the precious freedom to walk in shorts on a hot day, swimming in public places, pleasure of shopping,the joy of eating, on and on.
I am convinced that if a group of lipedema woman could just sit for a day in shorts and swim suits–if we could just see lipedema legs on other woman and love each other’s legs as part of each other, we would not feel alone or freakish. We wouldn’t anguish over our daughters who look like us.
AND when I discovered this disease, the thought that most went through my mind was: how could I have a disease which may easily make me wheel chair bound–NON-AMBULATORY–and no one, but no one in the medical profession even knows why we become crippled. It isn’t weight bearing related as I saw a woman with lipedema who was relatively thin. She has that same telling gait.
I am on my third year of fighting this disease and ironically I have made great strides and helping to go into remission. I have had no luck igniting passion for this disease among the professionals. I will write my protocol down this week and you can find it on my website.
I wish I could meet you, see you without judgement, love you as a sister, share my story with you and you with me. If we came together, we would not feel alone. We would not be alone.
Know I am carrying you in prayer, N., and I hope those prayers will help to heal the wounds and injuries you have suffered to the soul.
I am trying to get our sisters to post on our blog so I will be adding our letters (not your name) to it. lipedema talk.com Also, many many women from Australia have lipedema.
Hi Maggie,
I just read the story above. There’s a really good massage therapist outside Sydney named Juliet George. She runs a clinic there (Poppy Lane Clinic) and has written several books on Lymphoedema/lipoedema (one for diet/ several for bandaging). Here’s the link to the site.
http://www.lymph.com.au
she might know of someone in the Perth area…I had written her regarding lymphoedema and she was very responsive to me as I have been unable to get any answers regarding lymphoedema. Hope this helps!
Vanessa
She is one of the first people I found…a lovely woman and committed to helping us. Thanks!
I would love to meet you. I live in Perth WA and also have lipedema. The Internet gave me a name to a condition I developed after the birth of my second child. I have done the round of the ignorant doctors, leg scan etc to be told it’s fat. No explanation no diagnosis no interest. I modified my diet, exercised, had massage and kept weight under control and thought I was getting away with the pretense of looking ok ( long pants etc) for 20 years. I am now 58 and seem to have hit an upsurge in leg size, pain, difficulty getting going ( I have always been a high energy never stop sort) and really feel the need to reach out to a fellow sufferer. I don’t know anyone with lipedema and realize I need to. Is there anywhere in Perth where lip ladies meet? If not can we make it happen?
Hopeful
Hi Diane. There is so much help now. Many of us have joined forums and forged friendships based on our common experience of lipedema. Distance doesn’t seem to matter. Go to lipesechallenge on Facebook, and I will get you started. Your story is my story but the way.
And another…..Maggie
Hi Ladies,
My name is D…. I’m 37 years old. I’ve had this since I was about 12. I was a chubby kid, fat teen, fat young adult, so I was always told to just lose the weight (by family, friends, and medical providers). I’ve dieted, exercised, but always had big legs no matter how much dieting and exercising I did. In my early 20’s I lost 120 pounds very quickly by pretty much not eating and over exercising. I still had big fat legs though (at the time they weren’t all deformed just big with the ankle roll starting)–I kept the weight off for 4 years, but hit a wall and no matter what I did I could never get below 215 pounds. After some crappy life stuff, I eventually gave up, and (I worked for the same company for 13 years) and spent last several years working in a job where I could be invisible…after work and on the weekends I was a recluse. As a result, my weight ballooned to 560 lbs by 2006, and as my weight went up so did my legs and I began to develop the fat lobes.
During fall 2007, I had bariatric surgery (duodenal switch) and lost 200 lbs. Some say surgery is the easy way out, others say great, do it! Well, I mostly lost from the waist up, so my legs are still very large and deformed, and at 360 lbs and my height, I’m still morbidly obese. Needless to say, it has been very disappointing considering the complications I endured after the surgery (infection, wound vac for months, and second surgery to open it all back up since my body was allergic/rejecting the sutures, so they had to be taken out–months of healing with my sister changing my wet to dry dressings twice a day, finally all healed by fall 2009, and then oops…spring 2009, another hole in my belly…the surgeon missed suture, so more healing time until mid summer 2009 (finally done–fingers crossed no more sutures try to make their way out, the fear remains). Thought I’d be able to get around better, just like all the other people who had the same kind of weight loss procedure. Well no dice. Finally coming to terms with that, and with the fact that I have likely lost all the weight I can from the surgery…now I just have to stay focused about keeping it off–can’t eat much with the stomach the size of a banana, plus I don’t absorb all the nutrients from foods so I have to take supplements (A, D, E, K vits, calcium, multi), and I’ve also been told I’m now anemic (taking oral iron, but if numbers don’t go up in the next 2 months will be doing iron infusion), and my parathyroid levels are high (my new doctor believes it’s a result of low vitamin D, so taking 100,000 ui per day to get that up and hopefully the parathyroid level will go down–if not, will need to see endocrinologist). Up side is I am no longer diabetic (that happened within days of the surgery), I no longer have hypertension or sleep apnea, so that is a ray of light and something to feel good about.
Anyhow, back to the legs…the doctor I was seeing in 2005, did not know anything about lymphedema, but once I found out that might be what I have I told him (after some convincing) he referred me to a Physical Therapist who was certified to treat Lymphedema. I live in a rural area, so my sister was driving me (this was prior to my surgery so I was much bigger then) 140 miles round trip, 3 times a week to get my legs wrapped…that sure got expensive! We did that for just over a month, and saw some minor progress. The therapist told me that once I had the weight loss surgery, my legs would likely get better, easier to wrap, and eventually I might even fit into compression stockings. At that time, she did not say anything about Lipedema. I had the classic pitting edema, weeping lymph fluid, positive stemmer’s sign, orangy-purple hard skin back then, so I guess she just assumed that is all I had. However, the more I am learning on my own (in just this past week) I’m coming to believe the lymphedema was secondary to the lipedema. Oh, and did I mention I believe my Maternal Great Grandmother had this condition too? I’m the oldest grandchild, so I remember her and her “stove pipe legs” as they called them–plus, I have pictures of her and it seems pretty clear (lipedema, lymphedema…whatever the diagnosis…all roads lead back to big fat legs…uggh!).
I don’t know what to do next. I just recently met my current doctor (who again, I am new to seeing—I moved to a bigger town, but we are still pretty rural and I did not make a connection with a provider because of all I was dealing with for my abdominal wound, and then just isolating and not wanting to face the judgment of yet another provider—wanna guess how many times have people asked me if I’ve had the weight loss surgery YET?…grr!). Fortunately, he was not heinous about my weight when I first saw him, and he was concerned about the legs, but for the first time…he actually wanted to try to address it (despite the fact that he doesn’t seem to know much about it). He arranged for home health nurses to come in and wrap my legs with my Jobst wraps. My poor sister has wrapped me when she could, but she is a full-time college student, this summer she has been working part-time, and she does most of the household stuff (like shopping and laundry…which is downstairs, and any cooking that requires standing for long periods), so the legs have remained on the back burner. I was kind of excited about the nurses coming to wrap, but then reality set in. Unfortunately, the nurses don’t know much if anything about lymphedema, much less how to wrap and out of the 5 times they have come so far, it’s been 3 different nurses, so my sister is having to show them…and basically just wrap my leg herself (she went with me when I had the brief lymphedema care in the past, and learned from that, but is not an expert obviously). Now, there is the chance that I will be referred to a PT trained in Lymphedema care that we found in the nearest city (an hour away), there is also a chance that I could get volunteer transportation to take me there, which would be a must…my sis can’t drive me once school starts, and we can’t afford the gas. I am just wondering if this guy will know anything about Lipedema, and realize, as I am now, that Lipedema is the primary issue–then, what could he do for me? Not sure, but still a bit hopeful.
I’m currently on disability (since 2006, though they back dated it too my last day of work in 2004), my sister and I live together, and we are raising my almost 6 year old daughter (she was just 4-days old when I adopted her from one of my first cousins–that’s a whole other story, some people would probably rather not see someone like me adopt…but was not done to be selfish and honestly my daughter is the only reason I keeping going and trying to get better these days–my sister, my mom and I are working together to give her the life she never would have had if she had gone on to the same fate as her bio siblings on our reservation…we’re Dakota/Nakota (Sioux Indian); her six other bio siblings have been in and out of foster care and bounced from bio mom to other family members–thankfully my daughter hasn’t had to experience that ever, and I try to be the best mom I can be despite my medical issues). I’d like to go to more of my daughter’s activities (even going to her dance recital this spring was a physically/mentally exhausting outing—getting ready, wondering about seating, dealing with the stares from people); my sister takes her to most places, and I stay home, which is not good. I need to get to a point that I can get out more…I need to care less about what others think about me (I worry kids might start teasing my daughter because of me). Physically I hurt all the time (hips, knees, back, tailbone), my shins hurt–especially when the wraps go on my legs, the fat hurts when anyone pushes on it, it bruises a lot, I have these crazy varicose veins, I have a lot of depression, insomnia, tired all the time—I have many of the Decrum’s symptoms too, so not sure if I might have that instead of Lipedema: weakness in my hands, arms, numbness (been diagnosed with carpal tunnel), when I get sick, my allergies flare, or before/during my period my body hurts even more than usual, I have headaches (migraines), am irritable…a hot mess!
I need advice about finding an expert or someone that will know how to help…if I can be helped at this point. I have attached a few of pics of my legs. I’d really appreciate and feedback, or advice you can give me about what I can do. Thank you!
ANOTHER:
I am newly diagnosed with both Lymphedema and Lipedema. I am just starting treatment. My PT said that there is a diet out there as well as herbal options that may help, but there is nothing that can put this condition into any kind of remission, but that I can get about 25percent of my functionality back. Well 25percent is not an option for me. I did not accept in ’96 when the doctors said I was paralized from the waist down. I can walk. I am not going to let them tell me that I am loosing functionality perminantly. I saw on your site that you were helped by herbal/diet options. Can I please have this info to look at so I can see if it can be incorperated into my treatment.
MY RESPONSE:
Good for you M. Lipedema has stages. When I was 43 l could barely walk…when I was 47 I walked 3 miles a day and climbed mountains on the weekend. I went by wheelchair to Guatemala….while there went into remission for months. I take Modifilan. …love it. And biorutin complex from country life…Wellbutrin. for lipedema..not depression. ..eat no wheat… a bowl of pasta is a pound of adipose…..not losable fat. I avoid all foods with hormones…processed dairy and meats. Next month I plan to blitz national organization of women. …absolutely no one else seems. To care. Thanks for writing…keep your fire burning.sorry about disjointed words. I am emailing you from my Droid and its spell check makes me crazy.
My wife has lipedema… only mild at the moment but we are looking to have children soon – which from all my research could make it worse (it seems that there is a hormonal connection to this disease…
We have switched to a gluten free / low carb / paleo diet…
Gluten free = amazing difference – not as tired / sensitivity has decreased.
(My wife is not celiac but gluten intollerant but it has helped taking gluten out our diet)
I have a few questions?
How does Modifilan help?
What is the best for fluid reduction?
Is horse chestnut helpful?
Cheers
from a loving husband
These are great questions and as always I preface my answer with: I am no expert apart from my experience and the experiences of other lipedema women.
The baby question comes up frequently. There is a great chance that your wife’s weight will spike 4-5 months after the birth of a baby. I gained 7 pounds over my birthing weight during the three day hospital stay with my first born–a boy– but lost weight with my second child–a girl. The most important awareness I have is that if I had stayed on a low carb food regiment (against the hi-carb, low fat medical recommendation) I would have maintained a normal weight most of my adult life, regardless of the hormonal event my body was working through. I was frequently thin after the birth of my children, and I remained thin. My deal breaker was menopause. Lo-Carb diet would have saved me much loss of control over my body had I not been listening to my doctor’s starvation dieting mentality. So, yes, the first birth is a time to be very aware that your wife’s body will attempt to reshape and every hormonal event thereafter.
As far as having children with lipedema, you generally only risk passing it on to your daughters so that gives you 50-50 odds to begin with. I don’t know how the odds break down among girls but of my three sisters and me, two of us have major lipedema, one has only minimal leg and ankle representation and the other only presents significantly in the hips and 2-3 size smaller variance on top. There is MUCH variation in the way lipedema presents even in families and heaviness is less significant than disproportion. My sisters and I have all kept ourselves from the dreadful prognosis of 400 pounds by half so lipedema is like many diseases perhaps incurable but nonetheless manageable with appropriate food intake and body maintenance.
Modifian helps because our fat cells are so fluid that they are unhealthy–lots of debris. Modifilan attacks all foreign bodies our cells have no defense against and eliminates them. It acts as a cell cleanser (detox) and everyone should use it once in awhile. The medical community by and large has refused to accept a growing body of evidence regarding obesity and food intake. For example, they blame the high incidence of breast and stomach cancer on obesity. This is (in my poor mind) an illogical cause and effect argument. In my experience, obesity and cancer are both effects of an unknown cause. We do know that our liquidy inflamed lipedema fat cells are perfect hosts to carcinogens. We can’t yet cure this aspect of our disease but we can keep our cells clean and healthy. Modifilan keeps our cells healthy so our immune systems have a fighting chance to keep us otherwise fit. Having learned so late about lipedema, my use of Modifilan has saved my life by helping me to regenerate my cells.
Horse chestnut is helpful for relieving inflammations as is butcher’s broom. Bio-rutin is most prescribed for lipedema fluid reduction in Europe. My daughter is constantly researching and I am forever her willing guinea pig. She is doing a lot now with enzymes now and has just this week found a product that seems to emulsify our adipose and helps us to eliminate it via fluid. I will ask her to answer this blog as well.
I am thrilled that you are a caring husband. The fact that your wife’s lipedema is mild should give you some confidence that her condition will remain mild. I suggest that you check carb count on your gluten free products. They are by definition high in sugar–carbs. Sami’s Bakery (online) sells both gluten free and lo carb bread. Though the lo carb has components of wheat (pulp and kernel) it works better than gluten free for lipedema women because it has only 2 carbs per serving.
The worst thing your wife could do (I know because it was my mistake) is impact exercise of any kind. Swimming, bicycling, etc are okay. I will be sixty this year. I “discovered” lipedema three years ago. I spent fifty years attempting to redefine my legs to be within “acceptable” norms. All I did was become bone-on-bone and now I am unable to walk without canes. This is the most important thing I would tell your wife: protect your mobility. It is the greatest threat to a healthy future.
Good luck. The future is bright for you and your wife as more and more people learn about lipedema. M
I was just in a facebook debate with a school mate regarding the oft word “war” inciting violence. I wish to share it with you as it certainly seems relevant.
Maggie McCarey: As a young girl in Knoxville, Iowa being called fat by almost every boy in my class nearly everyday of my childhood, I can tell you that when I was anorexic and thin and beautiful, when seven drinks were lined up at a bar for me, and people stopped to take pictures of me because i was beautiful, I felt nothing but fat and ugly. Now I know that my “fat” is a genetic illness which cannot be dieted or exercised away. More Steve, understand that the word “fat woman” in America is so systematic of hatred for “fat women” that, even though Lipedema was recognized by AMA and MAyo clinic in 1941 only 1 in 10 doctors has ever heard of it. Their barberic bareatric surgeries are killing us and there are 6 to 11 million women who suffer from it. BUT they “fail to see the importance of their prejudice behind their ignorance” and how that prejudice is killing women. SO, I am the wrong person to tell that words don’t shape cultural reality and cause systemic widespread suffering. WORDS HURT. I have had broken bones. I don’t remember them with pain every time the word Bone is spoken. Blame? I don’t blame my classmates who called me fat or their parents or their parents but this horrible prejudice has kept millions of women in shame and no medical help for a few generations now. Those are the ashes of my childhood and that it is why I am an advocate for the poor, the downtrodden, the shamed, the rejected–or as you would call me–a liberal.
I am an eighty one year old retired nurse and my heart goes out to all of you younger women who are sufreing with Lipoedema, I have always had ‘plump’ legs – and hips larger than I would have liked – but it was not until I reached late middle age that, what I now know as lipoedema, started it’s terrible’ take over’ of my body. It has been a gradual process and I cannot count the munber of times the medical profession has told me to lose weight. I cried when I reached home after my doctor looked at my legs and just said ‘adipose tissue – adipose tissue ( ie. FAT – FAT) .. He told me to exercise more – even though I had told him that we had two dogs that I exercised reguarly – that we went on walking holidays in Scotland etc., etc., He just carried on about losing weight, as have every single doctor since then. I am, as mentioned, 81 years old, but only fairly recently my doctor arranged for me to attend a ‘ weight clinic’ where I would be helped with diet and exercise !!!!
I do not have to tell you all about the pain I have – for you suffer as I do – but I do want to say how much I feel for you. I consider myself lucky that I have only a relatively short time to suffer as I do. There is no treatment for our condition – none at all BUT I do feel very strongly that if we all go to our doctors and say ‘LOOK AT ME– LOOK AT ME cannot you see -feel- the pain I am in. Do you really think that I would be so stupid as to overeat – to under exercise if doing these things are the cause of all this horrible ugliness that engulfs part of my body and causes me so much pain – and restricts my enjoyment of life. Can’t you just LOOK and say the words that I want to hear – YES doctor – words – words of understanding. I want you to look at me and say that you know I must be in a great deal of pain & discomfort, that I have lipoedema through no fault of my own and that the medical profession does not know how to help BUT that you understand and are there for me when things get too much – just to talk – explain and understand as best as you can.’ Of course I am no saint and would likke to say a lot more re my feeelings toward the mendica lprofessionals who use overeating and lack of execise as the cause of our terrible condition. I had better stop now before you give up, but I think of all you younger people with lipoedema and wish you well. Do as best as you can to enjoy this wonderful life and the people who love you. One day our condition wil lbe accepted and recognised for what it is. Meanwhile my love and best wishes go out to you all. Best of all I wish you a sense of humour for you need one and mine has seen me through all these years (so far !!!) God Bless and be with you now and always. Ida from England.
You are getting fat!
“You are getting fat” was what my grandmother said when I was eleven. I was stunned: I was always told I was skinny and now I was suddenly getting fat?! I told her I disagreed and she replied that “at least my legs were on the heavy side.” The not so subtle comment stuck. I noticed, more so over the years, that my legs were not what people would consider pretty. I had cankles and chubby knees. Still, on the whole I had a good figure and a very average size. It didn’t stop me from wearing shorts, short skirts or a bathing suit. I’m grateful for that: lipoedema did not wreck puberty for me.
I wore the skimpy things on my good days. On the bad days my legs were bugging me, making me imagine I was fat all over, which was rubbish. Young girls can be very self conscious that way. I tried silly diets like eating dry bread all day every other day, basically stuffing myself with carbohydrates. A real no-no. My mother was a huge fan of both crash diets and weight watchers. She took pride in breakfasts that consisted of nothing more than black coffee and salad dinners, which both disgusted and attracted me. My vague attempts to NOT eat bad things made me crave them even more. I got very obsessed with what other people ate. I envied their ability to eat junk food and getting away with it. I also kept comparing myself to the skinniest girls in school, which was not particularly useful, but I was at that age where insecurities have a great impact and send you left and right on your search for the way that suits you. So far this wasn’t particularly remarkable. It just was.
Turning point
My period was a nightmare and so was my skin. My legs may have bugged me some days, seeing my pimply face staring back at me in the mirror was a regular nightmare. I was also popping pain killers every single month like it was candy. My mother took me to our family doctor. He was shifting in his chair, coughing, asking me about my social life and finally asked if I had a boyfriend. I confirmed this proudly. In the Netherlands many doctors jump at the first opportunity to prescribe birth control pills in an attempt to avoid teen pregnancies. Even the hint of a bad period or bad skin will prompt birth control pills as a remedy. When I asked if there were other ways to tackle my problems he told me it was possible but less effective and took more than one remedy, since the problems were very different. I was 16 and like many other girls my age I left the practice with a prescription for birth controll pills. Happy. Forget about the brand new boyfriend who had not made it to second base yet: no more pizza face! This was supposed to make life a little easier, gave me tool to skip my period on vacation or camp and would save me an awkward trip to my doctor at a later time to talk about birth control.
The package insert said one could temporarily gain a few pounds. When I did I was not happy and I also found there was nothing temporary about it. After a while I experienced side effects and went back to my doctor. I was told there was no way I could have gained from such a low dose of hormones, but to stop the side effects I needed to stop for a while, which a did. When I went back I was again encouraged to try birth controll pills, but change brand. I agreed and immediately packed on a few more pounds. A year later the weight was still there and the side effects were also back.
I developed a routine of starting, gaining and stopping with birth control pills. When I brought up the weight gain I was told that it was either impossible or highly unlikely. By the time I was in my twenties and had a new family doctor I got really cranky. I was tested for an STD I didn’t have; it was ‘just’ side effects again that had presented themselves with similar symptoms as this STD. I pointed out it was in the package insert. I was not making it up! He went over the alternatives for birth control and pointed out all the negatives. He was still pushing me towards birth control pills, despite my medical history. I said I would think about it, but stayed clear of that junk for several years. Looking back it’s impossible to name a number, but I gained at least 15 pounds, though probably a little more, from my yoyo experiences with birth control pills.
Wedding pictures
By the time I reached my mid twenties I was chunky. I wore stretchy things to fool myself one size. I was terrified to quit smoking, because everybody was going on and on about binge eating and gaining after that. Fear of comments on my weight drove me to eating secretly, hiding empty packages in the bin below ‘innocent’ trash. I hated myself for it. Despite my insecurities and the drama I created for myself, the love of my life popped the question. Not being a big fan of being the centerpoint of attention, we decided to do something awesome: a quiet wedding ceremony on a beach in Australia. At the time marriages in the Netherlands could only be legally closed at city hall, which was not exactly where our hearts were. The sound of the waves makes our blood stream, so it just had to be on a beach.
Like every bride to be I came up with the plan to lose weight before The Big Day. Trying to lose weight under pressure with a tight deadline is murder. But I really, really wanted it and gave it a go. Nothing. Not a single pound. Despite everything I also started taking birth control pills again, for the very last time. My efforts didn’t get me anywhere but keep my weight stable. It just had to make do and I bought myself some corrective underwear, which also got me to proudly tell the seamstress that the dress had to be taken in.
When I saw the wedding pictures afterwards I was mortified. The legs had been neatly hidden under a long skirt, but where did the granny arms come from?! I had fat hanging over my elbow. So much for short sleeves! I didn’t get it. I still had a great waistline. I had not gained anymore. What was this? I simply couldn’t wrap my head around it. I passed mirrors every day, but my mind had been playing tricks on me, concealing my actual shape. Despite the increasingly ‘tired sensation’ in my legs, my feet always being cold, the easy bruising, the unusual shape of my arms and legs I never mentioned this even once to a doctor. It simply didn’t occur to me something may very well be the matter. Running had always hurt my legs. I blamed it on my feet. I was always told I had a problem as a child with my feet. I reckoned something had grown or developed the wrong way, which caused me pain when running. The fact that I got more and more bloated I blamed on my being overweight.
Raging hormones
In my late twenties I had a change of heart and figured out that I wanted to be a mother after all. Before that I wanted to get into shape to get healthier for my sake and my future baby’s sake. I was a regular couch potato. I tried a crash diet with protein shakes. I lost a fair bit of weight and became less bloated, although I remained prone to swelling. I simply labelled it yet another flaw in my design, not too hard to explain since my mother had the same problem. The fact that running hurt provided me with a lovely excuse to refrain from exercising – as if each and every sport involves running. After going back and forth on the subject, I finally managed to quit smoking. Of course I gained some of the weight I had lost right back. But I didn’t care! I got pregant!
The pregnancy was very demanding on my body. The morning sickness was more like all day sickness. Water retention also started very early on. I was a regular whale, despite my modest cravings: apples with cinnamon and whole wheat bread with peanut butter. No matter what I did, I kept blowing up. I felt terrrible. My legs could barely support me. I was in so much pain. But all attention was devoted to the baby. I struggled through the days, but was ordered to sit this one out all the way: 40 weeks and 6 days. Baby had complications. Baby was happy where he was. Baby would be less happy and facing lots of medical procedures after birth. Mom was *****.
After the birth for 10 days I lost 2 to 3 pounds every single day. I joked that I might as well move my bed to the bathroom. I had my hopes up, but the weight loss, or rather the loss of excess water stopped abruptly after 10 days. What pregnancy weight had remained, stood its ground. I gave it time, tried to be patient, but lost my final bit of patience about a year after the birth. Not even a crash diet – my last attempt in that department – did anything for me.
How I got My Diagnosis
I contacted the local physical therapy praxis, that also had a gym attached to it. Despite my aversion of sports I decided to give it a go. With lots of patients rehabilitating and it not being a spandex infested joint, I figured I could handle it. My first session the therapist helping me out heard a lot of red flags in my background story. He referred me to a colleague. She helped me with some common post pregnancy stuff, but also noticed the water retention. She told me she could apply manual lymphatic drainage (MLD). My health insurance covered a few sessions, so we gave it a go. I felt sooooooo sick. Very polluted lymphatic fluid that had been trapped forever was set into motion. It took me several sessions to experience improvement. But I would only lose some water for a day or 2 and than it was back on. It was more a matter of the relieve of losing junk, toxins.
It also got us talking. She waited until she got to know me a little better and than dropped a bomb. She brought up the shape of my legs, the bruising, difficulty losing weight and what not. She ticked all the boxes. If that never got me wondering, at all? She than brought up lipoedema. She pointed out that she wasn’t allowed to diagnose me, but encouraged me to research the topic, to see if I recognized the symptoms. If so, she urged me to see my doctor AND bring information on lipoedema. With what I know now any idiot with knowledge of lipoedema could have spotted it, but that’s where it usually goes wrong.
I went online and nearly had a fit. In case of lipoedema, the adipose (affected) fat is expected to be there to stay. No treatments, no cures and no hope of shedding those pounds and the prospect of wearing ‘granny stockings’. I DID NOT HAVE THAT! Or so I told myself for the next 6 months. Until reality caught up with me. My legs started swelling after the littlest of diversions of my routine: walking more than usual, driving for more than 30 minutes, standing for a long line. Anything. My legs were also getting really sore.
I worked up all my courage, went to my doctor, told her about lipoedema and came home with a diagnosis of…..lymphoedema. I was supposed to lose the excess water by MLD, while I had already established that didn’t do the trick, and start wearing compression stockings. I did it all, had to admit the granny stocking were feeling good, but was still stuck with sore legs that had started growing and growing despite my efforts at the gym. I went back and got referred to a dermatologist. I had a lucky break: she knew lipoedema. I had my diagnosis in no time. But she also crushed my hopes. I was supposed to try and keep my weight down, wear the stockings and forget about MLD. There was so to speak ‘nothing anyone could do’. That hurt the most: I felt so lost with this crappy diagnosis with a crappy prognosis.
Thankfully I didn’t leave it at that. Thankfully there are ways to fight the symptoms. The earlier you get your diagnosis the better. And thank God for support groups. They get you a long way, which includes the way of improvement of your symptoms.
Hi I have found the site ‘www.bigfatlegs’ and through that this blog and just want to add some stuff to the lovely ladies who have posted before me,
I am British living in Germany where, thank goodness, there is a bit (only a bit though) more awareness than in the UK. I have been told by a Lymphatic specialist that ‘surgery is the only option now, but because of my age my skin will be all droopy afterwards, so it’s not worth me having it done!! Cheeky B*****d! No consideration of the patients feelings at all, having to live looking like this all these years – MEN!
However another (lady) Dermatologist has told me I must wear the compression tights all day, particularly doing sport & in the summer.The only problem I have with this is that putting them on is agonizing and they creep into the fatty folds behind my knees and dig in so badly that I have been really naughty and not worn them much recently. This is stupid of me though because they really help with the swelling and general leg pain, so I have to make an effort & at least wear them for some of the day! If you can – get some, they do help. and another tip I have, especially for the lady from Australia with the heel spurs – excruciatingly painful I know, but I have had mine treated with an electric-pulse therapy (Stößwellentherapie in German) which I had to pay for privately (cost €50 a time for treatment which takes about 10 minutes) and needed only 3 treatments in total. I had to wait about 2 months for the pain to be gone completely but a difference was noticeable after a month – brilliant!
I have cried at what I have read today, but I am also inspired to try the correct (at last) diet of low carbs, Gluten etc. and will also add the supplements,plus the wrapping sounds great, I will let you know how I get on.
Thanks so much for your experience which sounds so much like mine though an ocean divides us. What surgery did your
Doctor suggest? I am still pain free…I mean excruciating pain. With cold weather I have not done my wrapping so often and that has been a mistake. You inspire me to return to my daily routine. Please keep in touch. M.
The surgeon suggested Lipo, there is an expert in Düsseldorf apparently who has great experience with our problem. I have not made contact yet because a) I don’t have the cash right now, b) the Zerona is also worth checking out as it is non-invasive, but I suspect the surgeon in Düssuldorf uses the laser method of Liposuction which softens up the fat cells first (the one also created by the same compny which invented Zerona) and finally c) I now am inspired to try your self help methods to reduce the problem first!
However, I will try to find out information on the surgery and post it, because there may well be european ladies (or indeed ones accorss the water) who would find the information useful.
I will keep in touch – now I am going to shop for the herbal supplements!!
I just recently discovered the name for this condition, which I inherited from my mother. This blog is still getting responses, it seems. I need to gather GOOD information to give to my doctors, most of whom do not understand what they see when looking at my legs. Do some of you carry fact-sheets with you when you visit new doctors? Do you have problems with socks (due to the change in size from your foot to your lower leg)? New information on this condition?
I guess I will make some comments on what I see out here on this blog. Having seen my mother grow old and eventually pass away, I know that Lipoedema is not life threatening, just unsightly. I do not believe that wrapping is useful or healthy, personally. My mother’s legs had no associaion with her passing away (she died at 80 of Alzheimers). The worse thing about Lipoedema is that it is unsightly and causes confusion in un-knowledgeable physicians. A couple of years ago, I had hip replacement (not connected to the Lipoedema) and awoke to some un-worn “compression stockings” in my bed. I had been offered them with other surgeries in the past and the stockings are very uncomfortable because they really do not fit, nor do they make my legs any smaller. Lack of knowledge among medical professionals is just so frustrating to me! I guess I will make my own “information flyer” to give to my doctors from now on.
I am convinced that lipedema is a potentially terminal disease. My father died from complications related to lipedema last February. Think of all the illnesses that are allegedly caused by “obesity” Then think of the diseases you may have been diagnosed with. For many of us, that is asthma, allergies, panic attacks, fibromyalgia, blood disorders, hormonal and thyroid comlications. Some of the literature I have read cautions lipedemans never to have any elective surgery because of scar tissue and inflammation. My father got congestive heart failure from never getting the leg fluid released and then the doctors gave him laycex to manage water. The laycex shut down his kidneys and he died a horrible, painful death. I just received a phone call from a daughter whose 84 year old mother with lipedema is following my dad’s path. In fact, Mary, I am convinced that fat legs, lipedema, is also a symptom of an unnamed disease, not unlike diabetes, maybe even a cousin to it. I think lipedema should be clled something like HIRS: hyperactive inflammatory reaction syndrome. I will give you examples: I have had two surgeries: the first, gallbladder, left permanent egg-shaped scar tissue at the entry of the incision; and, secondly, knee surgery. Two days afterwards, my right leg turned outward. That was eleven years ago. I walk with a noticeable deformity of that eg. A young woman, a parishoner with lipedema died a few years ago because she was sent away from ER after an infected hair on her leg caused her body to slam fluid into the area. She became septic and died in intensive care after being sent home three times. And, a woman I am now corresponding with fell off of a bottom step at a store and the next day her leg began to fill until now, six weeks later, it is 8 inches around
Here I am again! I see that some of you are reporting pain and infections along with your Lipoedema. This has not been the experience in my family. However, Cellulitis is (from what I read) a possible problem for some folks with Lipoedema. My son-in-law (who does not have Lipoedema) almost died of Cellulitis. We should definitely watch our feet and legs for redness that could indicate infection. If a fever develops that means immediate medical care is required. But, as I say, from my experience my mother never got Cellulitis but my son-in-law did get it. Celluitis does not necessarity correlate to Lipoedema. As for the pain, I do not have pain associated with my Lipoedema unless someone is trying to cram my leg into a “compression stocking”. Those things were made for people with true fluid retention in the foot and lower leg. They do not make those darned stockings for people with excessive fat deposits in their legs! I have read that “gentle compression” might “help”. I guess I figured that out on my own. Stretchy jeans shape my legs as well as provide “light compression”. Does no one else find stretching trousers are useful for Lipoedema?
I do believe stretch type jeans and leggings help my legs feel and look better… Firmer and seem to take the pressure from the lower leg. It’s as though, supporting the column above the knee, reduces the pressure below. For a period of time I stopped wearing pants altogether, and I believe my legs grew larger. …. Jennie, Melbourne, Australia
Hi
I have been recently diagnosed with Lipoedema after researching and trying to get help for many months. Always had big legs; my Mother died abt. 40 years ago on the way to the hospital from Pulmonary Embolism and I was unable to reach her before she died aged 66 yrs. My advice is for people to research as much as possible and get it typed out. It helps to take it all in eventually. Similar stories with Doctors unwilling to listen and refer you on for treatment. Total deadlock. Through the internet I found LSN, London and a list of practioners here in the Uk and the BSL have a list also. It has been a long process to get where I am now but I am with a Nurse at a hospital and there is a Support Group. I eat organically and use organic skin lotions so it limits the toxins in the body.
I have only just started wearing Grade 1 Flatbed Knit made to measure Compression Tights and will move up to Grade 3 eventually. Donning the tights was difficult! but with every negative thought I tried to replace it with a positive one as tights act as a mini massage especially when exercising and walking putting the heel down first and then the toe. I am off swimming tomorrow and have an exercise bike. Compesson/exercise may help to release the trapped fluid. I don’t want my children to go through what I did with my own Mother who also had big legs like mine.
I was helped so much from a Lipoedemic sufferer online and don’t know what I could have done without her advice. I would describe wearing compression similar to wearing a few pairs of trousers and feeling as if they are dropping slightly between the legs!
I am looking into having MLD once I get used to the Compression. I understand also that we may have the same condition but also that we are all different and that what one person can cope with another can’t depending on the severity of the condition and other complaints.
I try to drink lots of water and buy Organic Decaffinated Coffee, eat porridge with fruit, cooked tomatoes, black grapes, apples, oranges etc. and try to keep low carb. Almond nuts have Vitamin E which is good for the skin. It’s like trying to fit the right pieces of a
jigsaw together. Some people eliminate different things from their diet than other so we
are all learning.
Finally, I am not a great speller. Lipedema, not Lipoedema, lol.
ary. You are asolutely correct on both counts. If someone with lipedma spikes a fever due to wound in area you should rush/er to the ER because septic poisioning spreads quickly. I tell my family to tell ER docs septic shock for lipedemans is the same. Level of urgency as a diabetic in a coma. As far as light compression, I have written quite a bit about it on http://www.bigfatlegs.com under remission protocols. I give a very specific direction for light compression with something I made and call canklets. It tells you where to order everythiing you need to make your own. Compared to compression bandages they are so cheap and washable. I have had mine over two years. I used to wear them everyday and they are only slightly warn. The thing about your doctor–some people download info from my website and other sites, their history, and photographs of lipedema legs. This
is always an issue but more and more women now armed with facts are forcing their doctors to accept their lack of knowledge.
Tell your doctor immediately that is an AMA recognized disease first identified by researchers at Mayo Clinic. That’s your password into their locked minds and also the British Medical Associations that Have recognized it. Let us know how it goes.
Hmmm. I think you and I disagree on how deadly Lipedema is. I think my family shows that most women do not die of Lipedema. It is unsightly, yes, but a surprising number of men think big legs are extremely sexy. I want MY doctors to understand that just because I have Lipedema, it does not mean that I have Lymphedema or other serious health problems.
Mary. I appreciate your views. When the doctors signed off on us saying lipedema was incurable, it forced us to think for ourselves. I completely agree with you that many men love big legged women and I will stay open to the idea that lipedema is more unsightly then unhealthy. Blessings!
Mary, naturally everybody has a different angle on an illness or a disease. My family has a history of congenital heart disease and therefore I am convinced that carrying around legs that weigh more than double what they should must be a contibutory factor that cannot be ignord! Any excess fat deposits in the body are going to be very bad for you, and the pure fact that our Lymph glands do not function properly, and are unable to remove the toxins from our bodies as they should do, is to me an extreemly worrying factor!
As to the compression tights, as I have previously said, because I live in Germany where the health insurance is still (just about) able to prescribe some expensive remedies, I can get tights made every 6 months and they are made to measure (costs about €500 a pair) and they are firm to say the least. My Doctor has said that the firmer pressure I can stand, the better it is for the removal of toxins from the body!
When I had my varicous veins removed 2 years agao I had the thrombosis stockings made to measure first (but had to sacrifice one pair of tights for it), and they were very tight, painfull to put on, but my surgeon said it was necessay because if we have Lipedema we have a very great chance of developing Thrombosis if we are prone to varicous veins.
So I think we should all keep a very open mind to possible life-threatening complications from this desease because those toxins can’t be doing us any good that’s for sure!!
Well, I feel that Lipedema in my family is just another genetic characteristic–not at all dangerous or in need of expensive clothing or fears of dying. I too have another genetic condition–Marfan Syndrome. I have had to have major heart surgery to repair my congenital bad aortic heart valve and to fix the aneurysm in my ascending aorta. (Bad aortic valves and aortic aneurysms are a part of Marfan Syndrome.) Nothing bad has ever happened to me due to my Lipedema. I just cannot hold the notion in my brain that my mother’s benign fat legs would cause trouble for me or my general health. I know you are in a different country, so your medical people have different notions there. I also know some people in the US undertake dangerous medical procedures for, what I consider, not good reasons. I was reared to “not look for trouble” with benign medical conditions (like big legs). If, indeed, 11 percent of women have Lipedema, I would guess that most of those women have few bad side effects from their Lipedema. I guess I fall into that group.
I have had lipedema since puberty.
I have read a lot about nutrition and experimented with whole, natural foods and have discovered the following habits greatly improve my own lipedema:
1. Low glycemic diet, avoiding sugar, about 80% raw veggies and salads, some fish, chicken & only occasionally dairy. I try to avoid rice, bread, pasta, corn, grains, cakes & pies.
2. Skin brushing
3. Yoga
4. Infrared sauna treatments
5. Eating seaweed
For me at least, if I stick to this plan, it helps tremendously. I have noticed a connection between a sluggish bowel/constipation and greater inflammation & pain, which is how I learned to modify my own diet. Sea vegetables are amazing! I discovered that my ankles were actually visible after eating sushi, although I would not advise eating the rice, as for me it creates a lot of inflammation in the legs. I hope these natural methods work for others as well as they have for me.
I’m not sure what to write, but here goes – I live in Sydney, Australia. I had an operation on my left ankle in 1974/5 and ever since I have had a ‘soft tissue’ swelling over the outer side of that ankle. Of course all the doctors said it was because I was ‘fat’, which I was. I don’t remember exactly when my legs became so swollen,but it pwas many years
Hi, Toni. If you are not connected to the Lipedema group in Australia, you have readymade friends waiting to meet you. I hope you will contact them. They are lovely women. Go to bigfatlegs.com..News and Events. Their addess is at the bottom of the page.
A million thanks to all you wonderful people for sharing your messages online – what an amazing thing the internet is – I am 60 years old and have suffered unknowingly with lipedema all my life – but only 2 years ago for some unknown reason I decided to do a google search for ‘ big fat legs sydndrome’ – clicked images – and lo and behold – there I was – and what a relief it was to put a name to this dreadful condition after so many years of being blighted by it – the same old story! Many thanks for sharing anything that can be of help – Eating carbs will never be the same now- careful eating and exercising is such a big issue – and just keep the image of unmetabolised carbs settling on your thighs forever when you feel the need to pig out over second helpings at Christmas!!
About a month ago I was desparate to find an answer to why my calves were getting so big. (My hips have always been big – 2 to 3 times larger than my waist line. Royal pain to find pants to fit!) Found information and pictures on lipidema and wanted to cry. All my life I have described myself as built like a pyramid – nothing up top but spreads out from there. Then I was the “Christmas Tree” because of my legs that are like tree trunks. I always felt God built me like one of those children’s books that are cut in half and if you flip the top half and leave the bottom half you get funny looking characters. That’s me. I’ve always felt like a freak. I don’t eat that much food – even my husband tells me “you eat like a bird.” Yet I haven’t been under a size 18 in years (sometimes highter.) I recently started to really try and walk – wanted to get up to running thinking that my help but my legs hurt constantly from it. Sometimes if I get touched in the leg – even the lightest touch – it well send a shooting spark of pain. Husband calls me fragile! It is now also affecting my arms so I have to wear shirts too big just to fit my arms.
I wanted to cry when I found information on lipedema because it leaves me out of control. No matter what I do I am always going to be this way. I am always going to be that “freak” that God threw together wrong. I have no control over changing the way I look. While it’s great to finally have an explanation, I just can’t see that it outweighs the down right loss of hope that someday I’ll be able to be “normal.”
Sorry if this is depressing but I’m depressed dammit. Maybe someday I’ll be better able to cope with my loss of hope but for now I’m grieving. It just really bites!
Hi Nichole, I know I was lucky enough to find a lymph therapist not too far away who also suffered with lipodoema – and she was wonderful – showed me how to do lymphatic drainage on myself – lots of useful instruction on YouTube by MassageByHeatherW especially the deep abdominal yogic breathing that really gets the lymph flowing. It took me a while to wear the support tights I was prescribed – but I wear them daily now and find them really helpful. With love and care the body is an amazing self healing mechanism – be positive – make the best of what you have been given – it’s only images in advertising media that make people think they should be perfect!
Hi everyone, I have not read everything here yet but I assure you I will!
As a nurse and patient I am shocked at the lack of understanding of this condition in the medical community. It is an appalling shame on America’s supposed high quality medical care that I have had to correct countless doctors on what this is. I have had specialists correct me and say, ” you mean Lymphedema”, not as a question but in a tone sounding as if it could be followed with, “you bleeping idiot!”.
I was in my 20’s the first time I showed a doctor an excrutiatingly tender large visible lump on my outer thigh, I was told to lose weight. I was diagnosed with MS in 1997 and a lot of my symptoms were blamed on that for a long time but later, after many steroid treatments, my legs more an doubled. Finally, last year, I was diagnosed with Stage 3 Lipedema with secondary Lymphedema and I cried. I wish I knew earlier, I wish I knew in time to tell my mother what was wrong with her legs, she passed in 2002. She was misdiagnosed with venous insufficiency and spent years tearfully going through the painful process of putting on surgical support hose daily. I took my beautiful, petite daughter with me to the appt with the Lymphologist and she told her she has a mild form of it at age 25. I cried out of happiness for the correct diagnosis, for an explanation that it wasn’t my fault that I had ugly legs. I cried for the child I was who witnessed my sweet mother being so ashamed of her legs and for her not being here to learn it wasn’t her fault either. In a time when it’s hard not being able to wear the cute stylish dresses and the high heels that are in right now I thought of my mother dealing with it in college at a time that girls were wearing pencil skirts and pumps.
I am hopeful, my doctor said there is a form of liposuction that they do in Europe and some might do here. Today I saw on Dr. Oz that ther is a laser lipo that “melts” the fat, perhaps it works for this. I dream of starting a company specializing in socks for us, I can’t find any. I have a heart problem secondary to MS called Autonomic Dysfunction with Postural Orthostatic Tachycardia Syndrome and my cardiologist wants me to wear medical support hose to better support my cardiac function. I am shocked again at I have spent hundreds of dollars and can’t find any that fit and the ones that are suppose to fit don’t and are way too painful to put on! The last ones I tried left me with goose-egg bruises all over. My only option is to wrap both legs with Ace bandages (many of them)!! Can you imagine me doing that every day?
I want to help get word out about this horrible condition. I can no longer work as a nurse due to the edema and the MS but I’d love to participate in getting word out about this. It’s so disheartening to keep meeting insensitive, clueless physicians. I was even told by a neurologist that my main problem was that I needed to lose weight and be on anti-depressants, a typical phrase presented to female patients! i responded by saying, “I thought my main problem was from the lesions in my spinal cord??”. Shocking, hurtful, exhausting! I saw a Stanfor physician who couldn’t stop staring at my legs in horror saying something was horribly wrong but he had no clue what! That was difficult! We need to educate everyone! I now bring Lipedema literature with me to my appointments, thankfully my pain care provider has been open to learning about it– a key factor since the nickname for it is “painful fat syndrome”.
Thank you for giving me a place to write, we all need to stick together!
Oh and about the red socks…. I do turn red and I have lipedema in my arms also, my forearms turn purple-red frequently. The worst red spell for me was when I went to Washington DC with my daughter’s 8th grade class way before I knew what I had. It was a very long and grueling trip since we’re in California. I ended up in the hosptal ER one day when my legs turned deep bright red from foot to hip and was crying from the pain. They said my legs were bleeding under the skin, every inch, from being so severely swollen. That was years ago.
I found your story interesting also because I have had cellulitis numerous times. I hate going to the ER or any new doctor and having to start over with educating them on my condition and feeling like they think I’m crazy. I have a cluster of autoimmune conditions also and so do many women in my family, I often wonder how many other Lipedema patients suffer from miscellaneous AI conditions like we do?
I wanted to add a warning, not everyone runs a fever with cellulitis, especially if you have a mixed up immune system. I don’t run fevers with infections, neither does my daughter, she didn’t even run a fever with ear infections or a ruptured appendix! I always wonder if that’s a clue to something but who knows. Sorry for my earlier typos, typing one finger method on iPad 😉
I have just read your story and rings so true.I lost my mum this week suddenly.They took 10 weeks to diagnose lipedema and then just kept throwing morphine at her.We are waiting for post mortem results but i feel they have neglected her and have an overwhelming guilt
Thank you, sisters from all over the world, for sharing your stories and reflections here.
I am 55, self-employed, and living in Chicago with terrible chronic knee pain and stiffness. For the past 20 years, I have been going to some of the best holistic (and even some non-holistic) doctors, as well as massage therapists, chiropractors, acupuncturists, prolotherapists, nutritionists, Traditional Chinese Medicine practitioners, and homeopaths and not ONE PERSON, ever, mentioned lipodema. Ever.
The term first popped out at me a few days ago, just looking around online for Traditional Chinese Medicine treatments that could help with the cellulite and pain.
Like many of you, I am a textbook case. The more I learn about lipodema, the more it rings true in my heart in a way that nothing else has: fibromyalsia, osteoarthritis, sedentary lifestyle, general fatness….heck I was even diagnosed as having some kind of strange Danny Davito drarfism disease, even though I’m 5’7″!
In Chicago, the third-largest city in the United States, there is apparently only one practitioner, a massage therapist, who specializes in lipodema and I have my first appointment to see her on Monday. She was trained in Germany, where the disease is not under such an opaque curtain of denial. We had a wonderful phone conversation yesterday–she truly understands!
Dieting is big business here and it cuts across the grain of public consciousness to say that carrying extra weight in the butt and legs is not the same thing as laziness and a lack of dietary self-control. No one is going to get rich talking about lipedema in the way they can make money on diet plans, exercise gadgets, self-help books, etc. People want quick fixes, sweeping generalizations, and solid answers, and lipodema does not deliver those things.
Again, I thank you all for being here and I send lots of love. May we all find comfort as we seek solutions.
Lovely comment. I will tell you that you are very lucky to have found a health care professional. Most of us have gone it alone and with each other for years. The real irony is that I lived in Chicago for years with undiagnosed lipedema.
You MUST add Green juices to your diet and try to lessen modified carbs. Veggies are ok but fewer starchy ones and fewer fruits. Chlorophyll has done WONDERS for my lipedema–WONDERS!!!!! This is an easy change–start with 1 juice per day the first week and then gradually increase and decrease all refined foods. It helps to follow a Paleo-type regimen. Good luck 🙂
I am a lipodema sufferer as are my daughters and I am interested in any experiences of things that may help and research. It is a condition that has far reaching implications on emotional and physical health and wellbeing and affects your life in so many ways. I am planning to go on the paleo type diet but it seems quite expensive and tricky to fit in a busy lifestyle. But I am determined to give it ago, despite it being not easy for me as a carb lover! And as for exercise, I am also struggling with tiredness and aching knees and ankles, it is taking every ounce of energy to even walk about as I grow older (always been active). Must keep positive ladies and fight to get research done so our daughters and granchildren can get help if they have this condition.
Hi Thea. If you go to bigfatlegs.com on the news page you will find three forum addressess filled with women just like us and support 24 hours a day.
HI everyone! I Love you all. I have had lipedema since i was 4years old. I know the heartache that comes with it. Never being what everone wants of you. Wanting to be normal only to be put down by others. But enough with that. We all can learn from each other. I take alot of anti inflamation vitamins that really help. I stay away from acid that seems to make my legs tight. I do light exercise. I also thank God for watching over me. Maybe we are all here to help each other. I hope with time we can find a cure and smile that we have all fixed this problem together.
Thank you Alle. So glad you do the inflammation herbs. Have the medical community is busy analyzing exactly how lipedema seems like a “fat” disorder while the other half, including me, thinks lipedema is a hypervigilant allergic response to manythings.
Thank you Alle. So glad you do the inflammation herbs. Have the medical community is busy analyzing exactly how lipedema seems like a “fat” disorder while the other half, including me, thinks lipedema is a hypervigilant allergic response to manythings.
Thank you Alle. So glad you do the inflammation herbs. Have the medical community is busy analyzing exactly how lipedema seems like a “fat” disorder while the other half, including me, thinks lipedema is a hypervigilant allergic response to manythings.
Thank you Candace. You are correct. It isn’t such a well-used blog site. WE have a website now http://www.lipese.com that has 2000 pages of blogs. And a forum lipese challenge which is joined by people who like to talk herbs, spirituality, and hope. M
Maggie I am back in So. Glens Falls. Can you tell me your contacts in the area. I would like to make an appointment with someone that knows about lipedema.. Both of my daughter and myself I believe have lipedema. Thanks Lois.