If 1 in 5 women in the United States is suffering from undiagnosed lipedema, then why isn’t there a PSA or campaign to get the word out? I just found out about it and knowing what I know now could have saved me years of food deprivation, starvation, hours in the gym, and major depression!
PSAs are fine but I would have hoped your doctor would have discussed this with you.
First off, welcome to the board @itsnotright. Glad that you got a diagnosis and are able to start treatment. Just knowing what you are dealing with can be a load off your shoulders. Good luck to you!
Are you saying that it would have saved you from all that because knowing you had it earlier and knowing the prognosis meant you wouldn’t have spent all that time in the gym and worry about what’s going on?
I would wager that there aren’t PSAs because, from what I’m reading about it, there’s not a whole lot that can be done other than managing symptoms and working out to slow down it’s progression. You can’t really have a PSA telling women to not worry about these symptoms. Besides, unexplained weight gain should be checked by a doctor regardless of what you may think it is.
It almost seems like that would be like having PSAs about liver spots. Telling people not to worry themselves over new spots appearing on their skin as they get older could result in a lot of undiagnosed cases of skin cancer.
OTOH, if it’s just about making people aware, that would certainly be a good thing, but I fear it would just get lost in all the things one needs to be aware of. All the more reason for regular doctor visits and hope your doc is familiar with lipedema. Wiki suggests that a lot of doctors aren’t. It’s my understanding that a lot of women use their obgyn as their primary doctor. I wonder if they are better at spotting this than a family practice doc?
There are plenty of therapies for management that I could have been doing for the past 20 years and definitely ways to alter your eating habits that will stop the progression. I just finished listening to a seminar that detailed how it might not be a progressive disease if managed correctly. But my biggest reason for starting a dialog is to shout out first, its not your fault. It might not be obesity like everyone says. The fat actually hurts when pressure is applied which is not normal it is a symptom and there are answers but they are not dieting, bariatric surgery or hours in the gym because none of that impacts these abnormal fat cells at all. Surgical removal of these abnormal cells is an option and its not cosmetic. It is one of the options available as treatment.
So, don’t expect your dr to be familiar and dont webmd them either. Instead ask about it and let them know you suspect you may have this because… and ask to be sent to someone who does know about it and can help you. You don’t have to live with it. There is help.
Thank you so much mordecaiB! Exactly!!! I have lived my whole life with big arms and I just thought that was how I was made because my mother had big arms and her mother had big arms and her sister had big arms so… such is life. However, a few weeks ago I had a quick visit to the Hospital to find out that a torn chest muscle does in fact feel just like a heart attack! 
That is where I was reminded of just how excruciating the stupid arm cuff is for me when taking my blood pressure and all they did for me was get me the xxxxxlarge cuff which makes no difference when you have this fat disorder. It is painful to apply pressure to the fat cells because they have nodules that feel like pearls or chick peas and so I decided to do some research to find out if there was a reason… and there is… Its called Lipedema and its called the painful fat disease.
I just want others to know its not just you and there is help available. 1 in 5 women have this!
The Dr didn’t mention there was such a thing and actually most Drs don’t know much about it. It is the most under diagnosed fat disease out there. last report was over 17 million women are affected and it is a family disease that runs through the women in the family from generation to generation.
I also would have hoped one of the handful of nurses who applied the blood pressure cuff to see me scream in torcher would have wondered why it was so painful for me and possibly suggested I get checked out for it?
I just want to tell it straight that there is a reason the lower half of your body is bigger than the rest and why diet and exercise won’t do anything for it. Take a min to look up lipedema runs in your family.
there are things you can do and there are things to manage it.
and if nothing else the Hospital should be aware that if you have lipedema - you can not take bloodpressure with an automatic cuff on the upper arm! ever!!!
I’m sorry your doctors and nurses failed you. In the OP you mentioned at least 20% of women suffer from this. I would think that would be enough for most doctors to be aware of it but maybe not. I am certainly not discounting your experience.
Whack-a-Mole Yes 1 in 5 women and most Dr.'s don’t feed comfortable diagnosing because it’s usually misdiagnosed as obesity or lymphedema or just NOT diagnosed because society has been telling these women they are just fat and they need to eat less and move more and for these women who suffer as I have with this my whole life, its painful and its hard. I can’t find a jacket that my arms will fit in. My upper body is a Medium but because of my arms, I have to buy an xl or even a 2x just to be able to wear it. I also don’t wear shorts or sleeveless shirts so when it is 100 degrees outside, I’m in a 3/4 sleeve shirt and capris just to keep from feeling embarrassed. I’ve probably spent the last ten years on a diet.
You can ask your dr for a referral to a vascular specialist because lipedema is part of their curriculum so they know what to look for and how to diagnose and can guide you into treatment options.
I read about that, it’s got to be tough to live with. Are you seeing a vascular specialist now?
I saw 11% somewhere else, but that’s still a huge number. I’m guessing it gets brushed off as obesity and they’re told to diet and exercise.
There was a John Oliver thing a while back about how women tend to go undiagnosed for a few reasons. One of them being that, when compared to (white) males, their complaints simply aren’t believed…and that’s if the doctor even picks up on the complaint. According to some of these studies, males tend to just list off their issues while women use a more ‘narrative’ style of telling the doctor what’s going on. Sometimes details can get lost in the narrative. And, to be fair, this isn’t a fault of the patient, it’s something doctor’s are learning about their profession and their schooling may (might be misremembering) now include teaching better communication skills for just this reason.
John Oliver - Medical Bias
Doctor [Mike] Reacts to John Oliver
Welcome, and thank you for your contribution to the knowledge base.
I’m sorry for your struggle. I hope your condition improves.
Maybe you’ll understand why I’ve often mentioned to my health care provider wife that … since much of diagnostic medicine is memorization, recall, and algorithms … it just begs to be done by computers.
Maybe fewer people would spend years on daunting, frustrating, and expensive medical odysseys.
I wish you healing …
I think more and more of it is. I’ve heard doctors, established doctors, not ones fresh out of med school, mention they do plenty of googling* (to find medical papers and journals) because it’s simply not possible retain all the info and on these diseases, especially with new research constantly popping up that can help them diagnose something is this and not that.
I think I’ve also seen programs where they can check off boxes for symptoms and an can be guided towards some options. Of course, you then need to worry about them relying on those computers and not catching things that the computer doesn’t ask them about.
*ETA, of course, in order to go look something up, you have to know that you don’t know what it is or that you have some doubt in your mind. If you see a woman with very large legs and you think ‘obesity’, you’re not going to double check the symptoms of lipedema unless you already have a working knowledge of that.
I actually have a full physical scheduled for tomorrow so I’m hoping to get to the bottom of a lot of things. My primary care physician is a DO not an MD which just means that she is about whole, body and mind and likes to get to the bottom of things and treat healthy patience to keep them healthy so I beleive we will be starting a journey together tomorrow.
I’ve also started cavitation treatments for my arms which melts the painful fat nodules with ultrasound and then uses IR technology to tighten the skin and renew the collegen for elasticity. I read about a study done on 40 women with lipedema and 20 of them had liposuction and 20 had vacuum cavitation therapy and after 2 45 min session per week for 3 months the cavitation had better results that the liposuction and is non-invasive. Since it is currently offered in spa’s, I don’t even need a lipedema diagnosis to get started with treatment.
thanks so much DNR… I think knowing that I’m not failing at losing weight and learning that what I am doing will not work (not that it isn’t working) is a big relief!! Now I can tackle this from another angle and be victorious. I’ve wanted to just get liposuction for my arms for over 20 year but I always thought of it as cheating and that I could do the work! well! for me and anyone else with lipedema its not cheating! Diets and Exercise have no impact on these abnormal fat cells. You have to do something different and while Lipsuction is one of the treatment options, I’m starting with a non-invasive treatement called cavitation that I just leared about a week ago! I’m hoping to have beautiful lipedema free arms by the time my husband and I go on our Anniversary trip this year… (also I’m not sure if this proceedure liquifies the fat in these abnormal cells or liquifies these abnormal cells all together so I still need to read more about that part!)
If you look at photos of women with the disease, it’s such an odd body shape along with the texture of the skin and the pain, that you would think it would be more diagnosable. Not being a doc, I don’t know if other forms of obesity have the pain factor. Although my wife is petite, she has a really uncomfortable level of pain from blood pressure cuffs.
I know a lot of women, my wife included, are hesitant to directly question their doctor as Joey_P says. I wonder if it’s compounded by embarrassment when talking to doctors about weight. That’s a problem shared by a lot of men too.
Good for you, I hope you get the answers you need from her. Make sure you tell her everything, even if you think it doesn’t matter. There is no telling what little detail may flip a switch in her mind.
Good luck!
Yes, and there are 4 stages and 5 types so you could be at a stage one that isn’t HUGE and you could be one of the 30% of the women who have lipedema in their arms and yours could just go to the knees and not all the way to the feet so you can see how it is hard to put your finger on a diagnosis.
There are a few videos that have a dr diagnosing a patient and what she looks for so you can get an idea and the biggest telling sign is to lift up on the fat… if it is heavy and if when you feel deep you can feel chickpeas or bean bag or pearls in the fat those are the nodules and normal fat does not have that! when you push in and feel around for these pay attention to your pain level because I didn’t think mine hurt until I was feeling around for those nodules and yes, it does cause pain.
Welcome to the straight dope message board. I know the forum names are a little confusing, but “general questions” is for questions with factual answers, and threads asking for advice or sharing experiences generally belong in IMHO or MPTIMS. In particular, we generally put medical and legal questions into IMHO.
So I’ve moved your thread for you.
Best wishes with your health.
Pear shape bodies with large upper arms
Describes lots of Lumberjacks. Heavy lifting followed by heavy drinking. Lots of arm shit with saws and such.
Don’t ask me how I know.