Connective Tissue Disorders and Lipedema with Karen Herbst, MD (Ep 104)

[@hEDSRehab]

Such an interesting episode. I will definitely be recommending it to one of my clients with Lipedema. Full of so much information. Thank you for these wonderful podcasts!

[@bendybodiespodcast]

You are most welcome and I am so glad you found it helpful!

[@ExploitOpportunity]

Thank you for having Dr Herbst!

[@bendybodiespodcast]

@@ExploitOpportunity absolutely. She’s such a wealth of knowledge. What part did you find most useful?

[@ExploitOpportunity]

@@bendybodiespodcast hmm, I do many of the conservative therapies myself; compression 24/7, exercise, anti-inflammatory eating, compression pumps twice a day for an hour. The new studies, calcification around the fat cell, sound wave therapy, were all hopeful for me. I have managed to loose close to 60 pounds from consistency with the above mentioned therapies, it came off very quickly, in about 4 months, October will be 2 years I have kept it off. I also do Crossfit classes 4 to 5 days a week, with some other strength training, and mountain biking. I have been contemplating a food allergy test myself to check for inflammatory responses. It’s definitely very wearing on a person, it has been freeing knowing I don’t have fork & mouth disease, and somewhat sad mourning the life I may of had. My Mom had a really bad experience with lipo on her legs in the 90’s, I would prefer not to go that route myself. So the grind it is, thanks for asking.

[@SETGL2010]

Thank you!

[@bendybodiespodcast]

You are most welcome. Did you find the episode helpful?

[@SETGL2010]

@@bendybodiespodcast Yes. I’m making mental notes on a lot of things on my journey to diagnosis. I have so many weird things going on, and it’s helpful to hear about all the different issues and treatments.

[@bendybodiespodcast]

@@SETGL2010 are there any other episodes you enjoyed?

[@candyland8903]

I was diagnosed with EDS this year and have been trying to help my mom this year with her issues now that I know whats wrong with my body. But I have been trying to get her tested for EDS cause she has all these same issues, and now shes getting nodules in her lungs. This info has bene helpful

[@bendybodiespodcast]

I am so glad you found the information helpful. Remember that even people with Ehlers-Danlos Syndromes get other problems so we should not close our minds to other diagnoses.

[@LuceCelia]

Can you clarify her comments on amphetamine? That is a medication that would make most people have energy and lose weight- when she says their lipedema got better- people will want to know if she’s truly referring to lipedema fat.

[@tamaraholloway9634]

I've never been overweight. Actually often way underweight, but my thighs were usually large. I was diagnosed with many things about 3 yrs ago, including hEDS. Generally, I've only gained weight because of medication, and I quickly put on about 50lbs over 8 months on Lyrica about a year ago, but that put me at "normal" weight. I'm 5'9 1/2" and was at 165. I stopped the Lyrica because of the weight and other side effects. But the way the weight was sitting on me was weird. It looked like I had been very overweight and had bariatric surgery and lost weight. Skin was hanging around my knees and belly/groin area. My Dr thought lymphedema maybe, but after some research I presented lipedema to him and he agrees it's lipedema, not lymphedema. I changed my diet a lot, medicines, vitamins, minerals and supplements, exercise and compression and the inflammation went down a lot. I'm about 150 now and feel less dragged down

[@bendybodiespodcast]

Wow, thank you for sharing your story! Gaining weight on Lyrica / pregabalin is SUPER common amongst my patients and it is often dose dependent. Of all the things you tried, was there something in particular that helped the most?

[@The_RealNarrative]

Is there a sequencing genome company you can recommend for the UK?

[@bendybodiespodcast]

Make sure you are following the podcast so you will be notified of new episodes as I am interviewing Dr Atwal soon, geneticist expert in EDS. Please submit your question(s) here. forms.gle/ZD1AzDWGVK2FcEfy8

[@bendybodiespodcast]

What are you looking to be tested for?

[@LuceCelia]

There is a medication at Stanford they’ve been talking about trialing for lipedema- is there a reason she’s not considering these?

[@bendybodiespodcast]

I don't know. Feel free to submit that question for when I revisit this topic again. forms.gle/ZD1AzDWGVK2FcEfy8

[@bendybodiespodcast]

What is the name of the medication?

[@rajureddy9670]

Acebilustat

[@kaelou3408]

Who do we go see to get help with this???

[@bendybodiespodcast]

Thank you for your question. Most referrals are initiated by the PCP. I can ask Dr Herbst what kind of specialist would normally see these patients. Unfortunately, I don't think these problems fit neatly into one specific wheelhouse.