Do I have lipedema? (Photo)

Question

35F. History of fibromyalgia. My legs hurt all the time. They are tender to the touch, are always covered in inexplicable bruises, never tan, and feel as though there are little nodules under the skin all over. I only recently learned what lipedema was and am now wondering if all this time I’ve actually had lipedema, or even both. So…does this look like lipedema? I’m having difficulty finding a specialist in my area. Thanks in advance for your insight!

Thomas Wright, MD · Answer

Looking and your photos and reading your symptoms it is quite possible that you have lipedema on your legs. There is a lot of overlap between fibromyalgia and lipedema symptoms. The principal specialists who diagnose lipedema are Venous and Lymphatic Specialists and Vascular Medicine Specialists. The key is to find a doctor who is familiar with Lipedema and comfortable making the diagnosis of Lipedema. Lipedema is a systemic disease and for best results it should be treated comprehensively starting a low carb anti inflammatory diet and medical grade compression . Surgery can be helpful for those women who symptoms are not adequately controlled by the non surgical means. I have recently published how Lipedema Reduction Surgery can improve mobilty and function for women with lipedema.

Mats Hagstrom, MD (license on probation) · Answer

There is no diagnostic criteria or test for lipedema.
It is a diagnosis by exclusion.
Lipedema is simply a term we use for individuals who have certain subcutaneous fat and skin distribution characteristics.
It’s not an actual disease with an underlying cause or real treatment option other than treating the symptoms which tend to be continuously increasing subcutaneous fat surrounding extremities with worsening of cellulite. 
There is no known underlying cause. 
whether you’re given or accept the term lipedema does not change your prognosis outcome or treatment options.
In reality, we don’t have great treatments for flabby thighs on middle-aged women.
The best you can hope for is either an overall reduction in size with worsening of the skin through liposuction or an attempt at tightening the skin laxity with procedures like a thigh lift. Mild cellulite can be improved slightly with surgical intervention. 
Neither Liposuction nor thigh lifts are ever going to be sufficient to convert the lower extremities to what most people would consider attractive thighs.
To get a better understanding of treatment options, including what you could potentially expect if you had surgery, I suggest scheduling multiple in person consultations with plastic surgeons in your community who have proven track record doing both liposuction of the lower extremities and thigh lift surgery.
Doing these procedures well is not at all easy or straightforward.
Even in the hands of very talented providers results can still leave patients questioning if the procedure was worth having.
In the hands of providers lacking sufficient skill and experience, surgery can easily make things worse just as well.
I wish I could be a bit more optimistic, but I think giving false hope to people who really don’t have exceptional treatment options is inappropriate and unfair.
There may be providers who claim to be specialists in lipedema. If you opt for having surgery my best suggestion is to be VERY selective regarding choosing a provider. 
To find the right provider, generally requires having multiple in person consultations.
During each consultation, ask each provider to open up their portfolio and show you their entire collection of before, and after pictures of previous patients who had very similar body characteristics to your own.
Bring pictures of your body the same way plastic surgeons take before and after pictures and use those as reference when reviewing results During consultations.
Highly experienced surgeons should’ve access 100s or preferably thousands of before, and after pictures to choose from.
Personally, I don’t think you will have good outcomes from Liposuction because of the degree of skin laxity.
Skin laxity is the number one reason patient fail to be good candidates for Liposuction.
An argument could be made to have Liposuction in preparation for a future thigh lift.
That may be a realistic option, but it’s a lot to go through for a result that in end may leave patient asking themselves if having the procedures was a wise choice. 
Being giving or accepting the diagnosis does not alter much. 
In my opinion you have significant Saxity and cellulite.
My best guess is you’ve had weight fluctuations that contributed.
I don’t think you have lipedema. There are no definitive inclusion or exclusion criteria. Some people have attempted to create classifications but these are just subjective opinions. 
Best,
Mats Hagstrom MD

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