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

[@chloefm3]

I have Dercums and saw Dr. Herbst in 2012 or 2013. All of her suggestions and findings were so life changing. Water therapy, lymphatic massage, healthy anti inflammatory diet, lymphatic compression suits and compression garments are all very, very, helpful. If I hadn’t implemented them long ago I can’t imagine what shape I would be in today. When I am super diligent with all these tools I feel so much better. When I get lazy , especially with eating sugar and carbs I have painful flares. She is so knowledgeable and compassionate to these disorders that have so much stigma in our society. Thank you Dr. Herbst.

[@bendybodiespodcast]

Thank you so much for your thoughtful and detailed comment. Can you add any more details? What brand of compression garments or type of water therapy? Thanks in advance!

[@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.

[@bendybodiespodcast]

Wow that takes dedication! Thank you so much for sharing all of that and congratulations on your amazing diligence paying off!

[@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.

[@sylviegrandmaison2735]

Yes me too

[@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?

[@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!

[@sandraservin5418]

What are the symptoms ??

[@bendybodiespodcast]

I believe Dr Herbst covers that in depth during the interview.

[@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.

[@nataliajimenez1870]

Omega 6 fats are highest in seed oils which are soy, corn, canola, peanut, grapeseed, etc. It's funny that Dr Herbst supports coconut oil when it has the highest amount of saturated fats of all commonly consumed fats, including lard and tallow. Animal fats that have not been highly processed (that are just rendered at home) are perfectly uninflammatory. The problem is deep frying because the fats are oxidized and become more inflammatory so avoiding deep frying in any oil is important. Roasting, sauteeing, steaming and boiling are healthier cooking methods. Stir-frying with fresh oil is ok as well

[@bendybodiespodcast]

Thank you for sharing that!

[@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?

[@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?

[@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.

[@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

[@bendybodiespodcast]

Thank you for sharing that. I will look into it!

[@audreyardale5503]

Plant based is inflammatory. Keto diet is a low carb spectrum. The most non inflammatory diet is Carnivore.

[@bendybodiespodcast]

There are a lot of anti inflammatory plants.