Greetings!
I get this question several times a day and decided it’d be more helpful if I wrote the reply out fully for everyone to see and then I can just share the link.
So you think you have lipedema? There is help, welcome, and you are not alone! The first step is to check symptoms. I recommend looking at the professionals’ pages, like this one from the Lipedema Project, to get a comprehensive list of lipedema symptoms and details of the condition. This includes the different types and stages of lipedema, and will help you see pictures from their extensive galleries to use as a guide.
If you’ve done some research and you’re showing symptoms of lipedema, your next step is to get to a doctor for diagnosis. Most doctors receive very little training on lymphatics and may not be familiar with the condition. However, I recommend starting with your normal doctor with two things in hand:
- A printed copy of the Standard of Care for Lipedema in the US, and
- A brochure on lipedema from the Lipedema Foundation
If your doctor will diagnose, your next steps are to find an occupational or physical therapist, familiar with lipedema, who can help you with manual lymphatic drainage and compression fitting/training. If they cannot diagnose you, your next step is to find either a veinous specialist (they receive more training in lymphatics) or an actual doctor who is a lipedema specialist. See the provider directory that the Lipedema Project maintains.
Things you can do on your own, now:
- get some over the counter compression, like Bioflects, and start wearing it daily. Talk to your doctor about this to make sure there are no health conditions that would prevent you from doing this.
- cut back on sugar intake
- keep moving in ways that work for your body! Light, gentle exercise (I recommend swimming and yoga) are excellent
- dig in on youtube and the internet to learn how to do manual lymphatic drainage, dry brushing, and lymphatic yoga
- do not go buy a diuretic – it’s not what lipedema needs to go away
- do not starve yourself. Eat healthy meals.
- consider and research a keto diet. There is now research indicating good results for lipedema patients. Start here. https://lymphaticnetwork.org/news-events/ketogenic-solution-for-lymphatic-disorders
- join some support groups on facebook (Lipedema Sisters USA is my favorite), and start searching on instagram and twitter for the words, Lipedema or Lipoedema to find sisters on the same journey.
- consider your further treatment options like surgery for lymph sparing lipectomy
- consider seeing a therapist for mental health support – lipedema is hard on a person over time
- keep receipts and records for every treatment tried and penny spent – you might need this for an insurance approval someday!
- don’t give up!
I hope this helps you get one step closer to some relief and a plan to treat your legs and save yourself from progressing to the next stage.
Susan
