A New Theory: Lipedema is Caused by Subclinical Compartment Syndrome - Dr. Karen Herbst
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- Опубликовано: 6 сен 2024
- Content warning: This presentation includes sensitive images. #LymphaPress Chief Medical Officer Dr. Karen Herbst brings her keynote message from the 2023 @FatDisordersResourceSociety Conference to the Lympha Press platform, presenting research supporting the theory that #lipedema is caused by subclinical compartment syndrome.
ABOUT OUR SPEAKER:
Karen Herbst, M.D., Ph.D., is board-certified in endocrinology and has held faculty positions at Martin Luther King Drew Medical Center/UCLA, VA San Diego Health Care System/UCSD, and the University of Arizona. She won the Lifetime Achievement Award from Tucson Business and was named one of America’s top physicians. You may recognize her as the research physician on Mystery Diagnosis, featuring a man with Dercum’s Disease (The Man with 1,000 Lumps).
Now retired, Dr. Herbst is currently pursuing a career in private practice and research where she is head of the standard of care committee for lipedema in the U.S. and is working with the CDC on ICD-10 codes for lipedema.
MORE INFORMATION:
This webinar is presented by #LymphaPress, makers of the Optimal Plus, as part of our @Lympha_Press Education Series. Learn more about Lympha Press and our advanced pneumatic #compressiontherapy here: lymphapress.com/
Register for our upcoming webinars here: linktr.ee/Lymp...
Watch more videos from our Education Series here: • Lympha Press Education...
How can it be that lipedema has so many symptoms and STILL women are NOT covered by insurance for any and all forms of treatment to ease symptoms?
Whats the current status on insurance? No coverage at all?
Probably because it effects mostly women. Plus its a chronic life long syndrome. Insurance doesn't want to pay for that.
Good news tho, if you you have Medicare in 2024 they will start to cover. What they cover remains to be seen
Hopefully, Insurance will follow suit.
That's only older people, they won't pay for treatment BEFORE it become life changing.@@susandonaldson7701
Is this available to the uninsured?
Because it doesn’t affect a man’s penis. Penis issues get 40 different meds, an issue that effect only women gets mostly ignored.
My biggest challenge with lipedema is finding a doctor who specializes in diagnosing and treating it. I've had extensive vein treatments in my legs and am about to go back for a second round. However, this has helped somewhat but doesn't address the lipedema itself. I found the keto diet helped, and I did lose 65lbs, but I still have lipedema even though my legs decreased 4 inches on each thigh. I still have large fat pockets on my knees and hips. We need more doctors who understand the syndrome and can diagnose and treat us.
Bless you, did you go full keto? How did you feel within your body when you did?
I started clean keto 14 years ago and went full carnivore about 2-1/2 years ago. I now eat more whole food carbs but still protein focused as I feel my best with protein. I’m living long term at my goal weight (lost 81 pounds over the long haul) and have excellent muscle composition, but I have the same legs and fat pockets that you describe, plus upper arm issues. It’s so frustrating. I try to focus on how I’ve improved my life and health, but it’s hard sometimes.
@@GwenMotoGirl 1:19
I had lipedema since birth. Within the last year. Weegovy has reduced my size of my legs. I lost 90 lbs within a year . Stanford has a great team for lipedema.
I’ve just realized this is what I have in the last 6 months. Have been thinking for several years my fat hurts. Curiously enough a few years ago I had frozen shoulder in my right arm. I had an ice pack on my upper arm / shoulder and fell asleep. The ice pack slid off my shoulder to my bare arm. When I woke up my part of my bicep was hard seemingly frozen. My arm was a little hard. Took the ice pack off( it was gel) arm “thaws out” I developed a blister about 2”x3”, blister drains and over the next day or two tissue died (frost bite) I debrided that tissue. It took 30 days for the tissue to granulate in and heal the wound. What I realized a few weeks later is the fat that was in that area that froze was gone. Those nodules completely disappeared. I have one nodule that I am able to feel in my right bicep. My right arm no longer hurts. Makes me curious it cool sculpting could be used in treatment of lipedema. Anyone have ideas on this?
Hoping for a cure or affordable effective treatment soon. I want my life back. Lipedema has stolen everything that I loved to do. I was at a State Ballet on a scholarship when the fat deposits in my legs and arms started progressing beyond just a little bit of "extra insulation"... and because of the rapid change and incredibly stark difference in leg and arm size compared to the rest of the company, I was asked to leave, even after being given a couple of months to work with a nutritionist and taking extra pilates.... When that ended, I turned to my next passion, riding horses. That, too, has become unfair to the horses I ride, and so uncomfortable for me, that I had to give it up - it began affecting my balance and ability to attain proper equitation.
I loved hiking - I was peak-bagging the NH48, and my legs, even with compression garments, were uncomfortable - it felt like being repeatedly stabbed with a screwdriver, and just so heavy. I could no longer do the arduous technical treks because it began affecting the way I walk, which in turn, caused back, and joint pain and made it unsafe to climb and boulder.
It's now progressing on my abdomen, despite strict dietary protocol and calorie restriction.
I cannot even sit down long enough to do art, because of the incessant discomfort. I was an athlete all my life - being extremely physical is how i dealt with a lot of things and kept my own demons in check.
, The toll on my mental health has reached dangerous levels with no reprieve in sight. I worry about the future. It's not just about aesthetics - I wish it were.
I'm so sorry you are going through this. You sound like an incredible person with so many strengths. I am sending you good energy for strength to get you through this rough time in your life. I hope and pray that there will be more affordable treatments available very soon.
Carnivore Diet. Search for Leslie Keith for online consult. There’s hope for weight loss and hope to live pain free within weeks. It works. Ive lost 50 pounds living my best life🥳
Also see Sturdy Women. She lost 160 pounds and has Lipedema. Great testimonial of Keto Diet.
Get a vibration plate and do cycles with 5 day fasting, the body will eat up the lymphedema by autophagy
I’m praying person and I pray for you, me and all the other ladies dealing with this that we find a non-invasive cure. I know how frustrating this is. I’ve had since I was 11 years old. I have been henpecked by parents, teased by family, etc. My size made me isolate myself and not want to be in group settings. I didn’t find out about Lipedema until 2017 by accident, because TSA kept giving me pat downs and saying something was showing on their scanner. One time I was even taken to a back room and checked under my clothes. That experience led me to research my arms and legs and I finally found a name for it. It was bittersweet knowing that it’s a genetic condition that wasn’t my fault but also that the only “cure” is expensive surgery I can’t afford. My humble advice to you: instead of calorie restriction, try carb restriction . It really does seem to lesson the pain from inflammation. Purchase a vibrating platform. It helps with pain. Lastly, check out Lipedema Facebook groups. It can be helpful to share and read the thoughts of other ladies with Lipedema. But take breaks from it.
Great session. Finally someone explains why my legs feel like they have “asthma” after just a few minutes of walking. I distinctly remember being 12 years old and getting a “24 hour bug” my father called a norovirus. The next day after I finally stopped vomiting and went back to school I noticed I couldn’t see the chalkboard. It has affected the ability of my eyes to focus, then I found psoriatic plaques and my calves started to expand with what I now know is Lipedema. So grateful for you Dr Herbst looking into this and giving women hope that we’re not just “lazy and fat.”
Any other lipis out there trying to find out why theyre "always tired" ever since about 13years old? Like a chronic fatigue but different to the typical chronic fatigue... With all that micro inflammation constantly plus the body issues, pain and possibly depression it seems likely the combination of all of these could definitely be the cause.
Hi, go out and get scotch fillet sliced . Then throw it in the pan with a bit of salt. Yummy. Never ever hungry, do not desire carbs. Just go to the fridge grab a slice cook for 5minutes or so. You will find strangely subtle changes in your body. I always thought l was lazy although there was evidence to the contrary. Now, l wake up and now try to find ideas how to use my energy. An aside, weight loss is a pleasant surprise. Just try it. It is not a diet, it is a different way of eating and beneficial. Give it a month and see what you think.
I hadn't considered that. I tell my thyroid doctor that I've been tired my whole life, but it probably started around puberty.
The point about the location of where Lipedema starts and the saphenous vein makes so much sense. Are there saphenous veins in the upper arm as well??? I have Lipedema in both arms and legs.
Please do not apologize to the professions when individuals want or need the tools required to take care of themselves at home!! The mentality that we who suffer pain must bear and not use a helpful device to alleviate the pain to protect someone’s job is so ludicrous it’s unfathomable. Plz don’t apologize to the professions. Rather they should clamor for an increase to their professions so that we individuals can have access to these hands-on therapies for as much as and as long as required for continual wellness. Thank you so much for bringing this information to us, we have a long road ahead of us…
I checked in my 23 and me and found the MTHFR gene.. interesting.. my sister has Fibro and I have Lipedema. I would love to be part of a study!
Heterozygous or homozygous?
I could almost bet on which you have.
You can also look at your gene expressions in gene variants typically found in those with lipedema.
After being diagnosed with a vitamin B9 Folate deficiency I decided to look at the possible symptoms. I discovered that many people with this deficiency have the MTHFR gene mutation and have a problem converting the synthetic form of folate known as folic acid.
" When you take a folic acid supplement, MTHFR converts the folic acid into L-methylfolate, also called 5-methyltetrahydrofolate (5-MTHF). This is the biologically active form of folate; in other words, it's the type of folate our cells can use. However, if you have an MTHFR gene mutation, your body might have a hard time making this conversion."
What is exciting for those with Lipedema is there is new research that has found a link between Vitamin B9 and connective tissue disorders. This is the study :
'Could a vitamin deficiency cause 'double-jointedness' and hypermobile Ehlers-Danlos syndrome?
April 10, 2023
Source: Tulane University
New research identifies genetic cause for hypermobility and hypermobile Ehlers-Danlos syndrome, a novel discovery that may also, for the first time, allow medical professionals to diagnose and treat the connective tissue disorders.
Researchers at Tulane University School of Medicine have linked hypermobility to a deficiency of folate -- the natural form of vitamin B9 -- caused by a variation of the MTHFR gene.
Those with this genetic variant can't metabolize folate, which causes unmetabolized folate to accumulate in the bloodstream. The folate deficiency may prevent key proteins from binding collagen to the extracellular matrix. This results in more elastic connective tissue, hypermobility, and a potential cascade of associated conditions.'
mine too.
I was diagnosed with RA 6 years ago. Have tried every avenue of meds. Steroids and hydrochloiquine helped only. Just recently given Prism test for RA. The medications will not help me. I almost always have UTI with flare up and viral reactions. UTI show numerous systemic bacteria. Decided to pursue leaky gut theory and went on anti inflammatory diet. Then began immediate lipodemia in abdomen. Third time I have had it. First we're in knees. Second small in stomach. This time stomach. I read a paper today that antioxidants helped lipodemia patients.
I have now been two two specialist and my GP. I am lost and my lipodemia is growing.
For years i had GP's tell me it was cellulite...but it didn't explain the pain, and it looked much worse than just cellulite, plus i have it on the arms from the bend inside my elbow right up and along my bicep on both arms. I hate it, it's ugly and painful
Australian scientists have done genetic studies on multi-plex lipedema families to try to find a common gene in lipedema fat and in comparison to normal fat, they determined that lipedema fat has an excess of the "bub1" gene in it. Have you ever studied the relationship to Bub1? They are still testing in labs but they believe that there might be a future of Bub1 inhibitor drugs.
This is very interesting, because I know that my mother, my grandmother and great grandmother all had the same body shape being very bottom heavy. It certainly seems to be dominant in the genetics..
@@wisepati123 same here
❤I have stage 2/3 lippy, child hood ACE, am a Vodder CDT,and use MFR and MFU. This was the most affirming webinar ever for me. I sometimes feel that I am forging my own path in my body work practice, as I am working from the same basis,but was lacking the research and back up from more senior practitioner. This has given me so much validation for my practice thank you from my heart. This coherence will I am sure strengthen the results in my studio for my clients. Thank you ! I would love the full reference package if at all possible. Wow just wow. From the South Island of New Zealand
Hi! I have stage 1. Am also a LMT for many years. I'm moving more into lymphatic work. I just added and started using an Endosphere device. (compressed microvibration therapy). I really want to help more clients this way.
Thank you for your hard work. Hyper mobility, pooling(near syncopal sensations), (so orthostatic tachycardia also),such ridiculous pain. I get it now . All since middle school. Xo!
Would strength training/exercise assist in "toning" the fascia?? I have stage II lipedema, noticable fat pads at my hips, thighs, knees, calves and ankles, but I notice a huge change in these areas when I implement cardio and strength training, I wonder if exercise activates the fascia to help move the fluid to the deep veins. Very interesting and I truly believe this (your theory) is a huge component of a very annoying disease. Also, any idea why my legs look almost normal when I wake up everyday, maybe lying flat at night helps the body push all the fluid back to the heart? My legs swell almost two inches everyday it seems and when I wake up they're back down again.
Fascia can be stretched with exercise and foam rolling, tennis ball rolling..A myofascial release massage may be useful. I get one weekly.
Thank you for this enlightening and encouraging informative video. This year is the first time I have heard of lipedema and brought about mixed feelings as I was relieved to know that it wasn’t just me that other women struggle with this and I believe that if there is a problem there must be a solution, we just need to get to it without breaking the bank. Treatment is so expensive and medical does not acknowledge nor cover it. Yet it seem,s to be linked to so many healthy issues for some. I have high inflammation, diabetes, NAFLD, fibromyalgia, and have only recently been diagnosed with lipedema after my visit to a vascular surgeon for vein concerns I had. My skin is very thin especially on my legs and you can basically see loads of various colors of veins on the surface like they are going to burst open very easily.
I have been fit and eating healthy for 30years now as I was very skinny, but since my first pregnancy, I have been on healthy eating plans in an attempt to get back to my fit body state. Initially some diets helped but with age it has been more difficult. Been on no sugar for decades, low calories, low carbs to no carbs and every other eating plan that I thought would help diabetes , inflammation and weight loss but it’s been a huge battle. Weight keep going up and My legs just got bigger and more heavy making it difficult to move and keep fit. The only exercise I enjoy is swimming in and that is awkward and seasonal. I invested in a pressotherapy machine which is extremely painful and bruises my body so I cannot use it. I started lymph massages which is so soothing for my body, lymph circulation helps, brushing and light hand held machine massage also helps.
Sadly Doctors I’ve seen here have been totally insensitive and just assume you sit around eating and need to go on a diet… I also tried ozempic for almost a year and it has not helped diabetes nor weight .
I will keep trying until I find some way that helps, I pray and encourage you to do the same.❤❤❤
The thing that has helped me the most with all of my health issues is adopting a whole foods, plant-based diet starting 7 years ago. I eliminated all meats, all dairy products, eggs, all processed foods, all processed drinks, salt, all oils, and all sugars.
My focus when eating is eating foods grown from the ground (which is our species-specific diet), minimally processed, eaten raw (such as fruits and baby greens), or lightly cooked or steamed. The key is to retain as many nutrients as possible.
I eat anything grown from the ground, without limit and yes, even fruits!! The fiber will fill you up! Fruit is not the enemy for diabetics. Sugar doesn't cause diabetes, eating animal fat and processed fat does.
Visit the RUclips channels "Mastering Diabetes" and "Nutritionfacts Dot Org".
Wishing you all the best!!
I swell when I don't eat organic. I think the glyphosphate in our food or wine makes our capillaries leak. I have a homedics massager that I use on my legs and I take tumeric for inflammation. Keto helps alot.
Turmeric is high in oxalates.
Oh my goodness, me too! I thought I had developed a wheat allergy, but after an elimination diet and experimentation with unbleached organic wheat flour vs regular bleached and discovered the culprit. I NEVER eat bleached flour now and I avoid processed foods like the plague as they often trigger similar inflammation for me. I call it "food hangovers" but I think you are right, glyphosate is one of the major poisons in our food supply.
also be ccareful with fluoride in drinking water
Could it be a collagen issue I wonder? Collagen is such a huge player in the structure of the body.
And could the collagen issue stem from some kind of nutritional deficiency, either in a mother during pregnancy, or within us, either dietary or from some inbuilt failure to be able to utilise some kind of vitamin or mineral. Quite a few nutrients come to mind in collagen formation. Amino Acids, Vitamin C, Zinc & Copper are some of the biggest players.
It's interesting that you mention this as it's an area I'm currently researching myself. After being diagnosed with a vitamin B9 Folate deficiency I decided to look at the possible symptoms. I discovered that many people with this deficiency have the MTHFR gene mutation and have a problem converting the synthetic form of folate known as folic acid.
" When you take a folic acid supplement, MTHFR converts the folic acid into L-methylfolate, also called 5-methyltetrahydrofolate (5-MTHF). This is the biologically active form of folate; in other words, it's the type of folate our cells can use. However, if you have an MTHFR gene mutation, your body might have a hard time making this conversion."
What is exciting for those with Lipedema is there is new research that has found a link between Vitamin B9 and connective tissue disorders. This is the study :
'Could a vitamin deficiency cause 'double-jointedness' and hypermobile Ehlers-Danlos syndrome?
April 10, 2023
Source: Tulane University
New research identifies genetic cause for hypermobility and hypermobile Ehlers-Danlos syndrome, a novel discovery that may also, for the first time, allow medical professionals to diagnose and treat the connective tissue disorders.
Researchers at Tulane University School of Medicine have linked hypermobility to a deficiency of folate -- the natural form of vitamin B9 -- caused by a variation of the MTHFR gene.
Those with this genetic variant can't metabolize folate, which causes unmetabolized folate to accumulate in the bloodstream. The folate deficiency may prevent key proteins from binding collagen to the extracellular matrix. This results in more elastic connective tissue, hypermobility, and a potential cascade of associated conditions.'
Could this be the key ?
@@Maddy-qd8eg that’s interesting. Collagen is so crucial for cellular & vascular integrity. It could be that lymph vessels have a slightly different make up to blood vessels & need other nutrients such as B9.
The B vitamins play a huge role in so many areas within the body directly or indirectly, from stress-management, through Nervous System functioning, digestion of carbs, fats & protein, energy (ATP) production & undoubtedly many we are not aware of. But some of them are very lacking in our modern diet.
I’ve long felt that the MTHFR issue may well be driven by some other nutrient deficiency. The soil & consequently our food is so devoid of many minerals, vitamins & phytonutrients these days that it is all to easy to be lacking in crucial nutrients. Thiamine (B1) is a case in point. The modern, highly refined, processed & nutrient-stripped wheat & sugar-laden ‘Carbage’ forces the body to use way more Thiamine & other nutrients to process the stuff that it supplies.
Many of us are also chronically dehydrated at cellular level & that can radically affect lymph flow & toxin elimination. Kids are often given dehydrating sugary drinks & squashes from a very young age. Tea, coffee, alcohol, chemical-laden pop, etc are also very dehydrating - the body needs a lot more water to process them than they supply.
@@alisonbamford6723 I agree with the importance of getting the correct nutrients from our diets, sadly it is an uphill struggle now with so much of our food being 'modified'.
However for me the information in this study is huge as it correlates with so many issues I have witnessed in myself and my family.If the MTHFR gene mutation is present, it's effect on the body's ability to process folate can have quite serious effects in so many areas. My son has Pectus carinatum which is thought to be caused when the tissue that connects the breastbone to the ribs grows too much at puberty; another link to connective tissue problems.
There is also the role folate plays in the whole methylation process. It is absolutely key for the process to work correctly in order to successfully eliminate toxins. Siouxie Boshoff of Lipedema Living wrote an excellent article on her blog looking at how our inability to get rid of toxins could result in our bodies storing them in our fat in order to protect us.
Personally I believe that the fact these two issues - Methylation and connective tissue/collagen are linked to MTHFR and B9 , is a giant step forward in trying to understand the answers as to why some of us develop Lipedema.
I'm convinced 100 years of pushed grains, crisco / margarine /seed oils & high carb diets are a culprit in this epidemic. Those fats / sugars / grains do not feed hormones or tissues. They are all toxic
I recall listening to a video on here by Dr. David Amron (but I can not for the life of me find it again) stating that same thing - that lipedema has to do with a collagen issue and leaky lymphatics. It should be noted that there has been a link between Ehlers-Danlos Syndrome and lipedema, to where a good amount of us who have lipedema also have some sort of hypermobility.
Cupping has helped me immensely. I do it to myself so I am in control of the pain. I have been on a keto diet and take every supplement recommended between all the webinars..which pretty much chill the mast cells out. Finally seeing changes.😊
Would you mind sharing the supplements that you take? ❤
@@TheWyrdestWebPodcast DIM seems to really help estrogen metabolism. I worked up to 400mg a day. Inositol 2g at bedtime, magnesium threonate/glycinate 2g at bedtime Pycnogenol 300mg daily Fish oil 2g daily. Acetyl l carnitine 500mg daily. HMB 1g daily. d3 5000units daily with 200ng k2. Coq10 300mg daily, activated b complex( methylated b vitamins) 1 daily. polyphenol blend 1 daily. betaine hcl 1 tab daily(675mg) , berberine 600mg 2x daily, liposomal glutathione 1g daily. Luteolin 600mg daily, nac detox regulators 1 cap daily, nmn 500mg daily, joint support with glucosamine, msm and tumeric(amazon) 3 caps daily, saw palmetto 1 daily, maca 1500mg daily. horsetail 1 tab daily. I also have gone through gut bacteria reset that included oil of oregano bid x 2 weeks and neem oil tide for 2 weeks, then added back in pendulum metabolism support probiotics. I have a lifepro sauna bag I use every other day on 8 for 50 minutes and I have myofascial release massage every 10 to 12 days. I have the chirp rpm that is fabulous for helping with fibrosis and I go to physical therapy weekly. As the fibrosis resolves I find my hypermobile joints are more unstable. I also take guaifenesin er 600mg bid, and sleep aid complex nutracost 3 tabs at bedtime. These specific supplements are more for the hypermobile pre or post menopausal
, insulin resistant woman who is also experiencing hair thinning and also has lipedema. I also eat a diet that has no or rarely eaten fried foods, processed foods , carbs, sugars, gluten. I eat a lot of red and green vegetables and lean protein. I use avocado oil or butter or olive oil to cook with and I put coconut oil in my coffee daily. I get between 100 to 150 g protein a day also from supplements and diet. I make sure I have at least 2 bms a day. If I do not, I take Aloemaxlax with cascara 1 tab. Detox is altered with lipedema and being constipated and not sweating( sauna use helps) prevents lymphatic system from working optimally. For lymphatic drainage I use CzSalus compression tights and socks that have the individual toes formed, spanx arm tights. I have lymphedema pumps I will use periodically for total body drainage ( i have 7 lymphedema garments) I haven't had to use them as often lately. Dr Perry Nichols has some super videos on manual drainage.
@@1ashlybruc1Thank you for sharing your helpful regimen! Congratulations!
Is there research on ketotifen? A Dr used to recommend it for mast cell activation in neurofibromatosis itching.
All of this is so interesting. I’ve been that type A my entire life (nearly 38 years) and I’ve had little pain compared to what others have described.
Wow! Sounds so spot on! Head is spinning!
I'm completely convinced this is what I watched in my mother for over 50 years. I'm also convinced I have it, as well as my daughter & her 8 year old daughter.
I have apx 60hrs of medical talks to binge through & I have a good 90% of the markers. All of this makes so much sense. It's nice to know my 10 years of intuition on low carb keto, vibration therapy, etc, etc was on track.
All the chaos of what lockdowns did in my family, plus menopause hitting me like a freight train has caused absolute chaos in my being.
I happen to be in southern AZ and will pay the $500 to see Dr Herbtz. ❤
This is so validating. Thank you
i have eds and lipedema. both genetic connective tissue diseases.. since childhood
Anyone else also have Hashimotos? I started having issues with both around the same time. Wondering if there could be a connection since both are inherited, more common in women, and hormone-related?
Breaking down this process is so valuable! I just wonder about the effect of the dietary fat itself on this process. Are certain types of fat a trigger that starts off the cascade of inflammation? I was in great shape as a teenager until two things changed. I had to start riding the bus to school instead of walking and I started eating out at restaurants more often. Pizza Hut pan pizza, chicken wings and other fried foods are swimming in who knows what kind of oil. Surely this is one way we can take back control of our bodies!
Possibly the seed oils used in fast food - such as vegetable oil, canola oil, soybean oil, etc. they are know to be obesogenic and inflammatory to the whole body but especially vascular. Wings are fried in bad oils. These bad oils are used in the dough and in commercial breads too.
There is a connection via the adipose tissue. I had Cushing's disease, pituiutary adenoma from 1994-2002 undiagnosed. Diagnosed in 2002. Second surgery was removal of all my pituituary gland. I take meds to replace. I never lost the 89 lbs from Cushing's, though I walked 4 miles daily on the road. Larger legs and arms had bat wings. Thighs were growing outward. I was diagnosed in 2021 with stage 3 type 4 Lipedema. I done a research seeing other wmen that had had Cushing's. Both are. So that's how I came to have LIpedema.
Fascia blasting tools…my greatest weight gain in a very short amount of time outside of pregnancy, was when I used those stupid Ashley Black fascia blasting tools. I gained over 20# within a two month period. There was a Facebook group at one time comprised of women who had all these wide range of negative symptoms after using it. I have been diagnosed recently with lipedema, I didn’t think to ask about those tools at my appt.
She should be held criminally responsible for the garbage tools she peddles. I found the Ashley Black Facebook group that told their true stories about what happened to them. I’m so grateful I found them before trying her dangerous Fat Blaster.
I was thinking about getting one to help my cellulite but it was expensive and looked painful. I’m glad I didn’t get one now. I’m trying to learn Tahitian dancing. It’s similar to the hula but more lower body and faster. Trust me when I say that I don’t let anyone see me when I do it. It’s supposed to help with the waistline too. It’s worth a shot. Also I’m confused as it whether I should do strength training or not. I have done some form of it most of my life but not so much this past year. I work 2 jobs. First job is an office job and the 2nd one is cleaning. I was working in a doctors office but my feet couldn’t deal with the concrete floors anymore
I’m sorry this happened to you. I’ve personally found the tools to be very helpful to breaking up fibrotic tissue and reducing symptoms. I’m not affiliated.
wish I could have asked if exercising makes it worse? I have noticed that the pain and the fat have increased since I started jumping on a rebounder.
Crazy, right? The rebounder was supposed to be helpful for lymphedema but not lipedema. 😮 I don't know what to do anymore.
Very interesting, I have chronic exertional compartment syndrome. It unfortunately mostly affects thin sports people and i am neither, so dx took about 20 years. I have had four surgeries and the fascia just grows back. Also venous insufficiency.
How can I find out if I have lipedema or just fat, cellulite riddled thighs?
I can’t handle the pain from a the simple calf massage they give you with pedicures. I’m not sure I can handle MLD
Do you also bleed very easily? I stopped going to manicures and pedicures because I kept bleeding. I tried 3 different professionals who were all a bit upset by the bleeding.
MLD is very light and doesn’t feel like massage.
MLD is very gentle. Treatment is anti inflammatory. Ie. nothing strong or painful
@@anitacarmon-crawford6245 sorry for the late reply. I don’t have issues with bleeding but I bruise pretty easy.
@@JV-mb1tpthat’s good to hear. Seems like gentle is rough on my sore legs. I’ll try to find a specialist in my area.
fantastic presentation
I have been officially diagnosed with the A1298C MTHFR gene mutation. I looked at the Ehlers-Danlos tests for flexibility…..I am 66 and have no issues with placing my hands flat on the floor when bending over, without bending my knees…..though my pinky’s ‘almost’ can bend to the 90 degree position (had no trouble doing this in my youth), and bending my thumb back to my forearm is barely still doable….though this was also a very easy thing to do in my youth.
I have never been diagnosed with fibromyalgia, though various doctors throughout the years have prescribed many different things for my vague aches and pains…..plus, I have had migraines for decades. I can’t keep taking Excedrin (though that is the only thing that works), as a gastroenterologist said that my stomach looks like a grenade was tossed into it.
I can’t seem to be taken seriously by doctors most of my life, so I have been trying to find ‘natural therapies and supplements’ to improve. Do you think serrapeptase would help with lipedema? I’ve read that it helps with inflammatory issues that create that scarring within the tissues.
Oh, and it was recently discovered that I have several cysts in my pancreas, and the doctors seem unconcerned about my blood calcium climbing….it’s up to 10.6 now, it was 10.3 3 months earlier. I went to an endocrinologist and she just blew me off, said that there were no concerns for hyperparathyroidism. Whatever.
Thanks so much. This video is very helpful.
Makes me wonder if the increased pressure and fluid is why my legs constantly float. I have to force them down in the water. Its like trying to force a closed bottle full of water under, they literally pop back up.
Hmmm... interesting, my legs float too
I dont have hypermobile joints (i can barely move). I don't know my family medical history. I have had weight issues all my adult life. I'm 65 now, and it feels like a switch got turned on. 😮 Pain, swelling. The best part is that the pain doesn't seem to respond to OTC NSAIDs.
Only because I watched one video after another and they were talking about a similar thing - a Dr Sean O'Mara's lateelst video was talking about how he reduces deep subcutaneous fat with sprinting and a meat based diet. I wonder if the sprinting is giving that calf squeeze need to pump the lymphatics.
I always laughed that genetic testing said I should be a sprinter from my genes but maybe my Lipedema is from not sprinting.
Thank you ever so much for this presentation. 100% saving it to return to. Have you published this as an academic paper at all please?? Is it available at all???
Ehlers-Danlos Syndrome causes chronic soft tissue injuries caused by too much movement in the joints. Vascular type, classic type and joint hyper-mobility type all feature a lot of soft tissue damage and chronic inflammation. Classic type effects type 5 collagen which effects all areas of the body.
Very well presented! Now I have good medical info to share with my massage therapist, doctors etc. to see if I can make some headway to a better life!
Amazing lecture. Re the calf muscle pump, is it possible that the calf muscles are naturally hypertonic and therefore the diastolic pressure is increased, leading to a decreased effectiveness in the pump action due to a smaller difference in pressure between the systolic and diastolic?
I have hypermobile EDS and have noticed early stages of all these symptoms mentioned in the lecture over the past 5 years but they probably started 10 years ago in pregnancy. I have been more interested in the past 6 months as I suddenly have cellulite and what seems to be early lipodema. I’m learning to use cupping therapy to treat it. But when looking at exercises to stimulate the calf pump, I noticed toe walking mentioned, which is something neurodivergent and hypermobile people often do spontaneously. Calf pain was an early symptom for me.
That is interesting because I have tight calf muscles and that is causing issues in my feet and that could also make them less effective because there’s less difference when they are at versus when they are in use. I have been told to stretch by calf muscles, but it’s easier said than done.
What about decreased urination? I have noticed this in myself?
If Mucinex helps buy generic Guaifenesin 1/5 or less the price
NAC - increases epithelial tight junctions in both mucous barriers and cardiovascular tissues!
Dr Herbst statements at 6:47 - 7:05 does that mean a lot of lipedema patients have insulin resistance and aspects of metabolic syndrome but not diabetes?
I’m pretty sure I have leptin or insulin resistance. My BMI is 40+ but I’m not even prediabetic.
Basically. They're saying lipedema patients have a low rate of diabetes, but a higher rate of insulin resistance and some symptoms of metabolic syndrome. Insulin resistance can lead to prediabetes and later T2 diabetes, but it also linked to conditions such as PCOS and fatty liver disease, and one may not necessarily ever get diabetes even if it does increase the risk. Metabolic syndrome is a group of conditions (excess abdominal fat, low LDL, high triglycerides, high blood pressure, and high fasting blood sugar), and a diagnosis means that you have 3/5 of these conditions, so lipedema patients tend to either qualify for a diagnosis or only have some symptoms but not (yet) qualify for a diagnosis.
In terms of manual therapy, does massage gun have the same effect as gua sha?
So is it lipedema or lymphedema when have swelling. Compression pumps and compression pumps used on legs for about two years. Lost 50 lbs and many inches in both legs and thighs. Physical therapy and massage therapy did also. Did have major cramps in hamstrings.
Have fat pad on side of both ankles. Both legs almost back to normal thighs still swollen. I have pain on sides and buttocks area!! Have cuneal neuralgia but other than that they can't figure out why pain in buttocks when touched.
This is great information
What about the microplastics we're consuming? And vegetable seed oils? Both probably gets lodged in the fat cells causing inflammation
my insurance wont cover this so im in bed most days wracked with pain. you should allow more insurances to cover the lympha press
Keep searching. Get your diagnosis and look for services to be provided that can be covered
I’ve seen videos where hormonal changes during puberty, pregnancy and menopause are believed to have a connection to the beginning of lipedema symptoms. Do you believe this to be true? I am just learning about lipedema. I believe I am stage 2. When I think back, I believe the hormonal change for me was after surgical menopause which started following hysterectomy. In your estimation, does that follow the beliefs of your community? I was 41 yrs old when I had the hysterectomy. I am 68 yrs old now.
Did it start when they gave you hrt after surgery or didn’t you take the hrt? I think estrogen in excess is the contributor.
@@leslieh3785 - I didn’t take HRT. Several years prior to my hysterectomy, I had a DVT in my leg which broke off in pieces and went into my lungs. It wasn’t safe to take HRT. My doctor at the time assumed the DVT was caused by birth control pills.
@@retiredrailgirlswift145 so your body was making no estradiol at all. The only estrogen being made was estrone from conversion of hormones and stored in the fat cell. (Or at least that is my layman’s understanding.) very interesting. I wonder what would happen if you could take estradiol? Do you have any thyroid issues?
I have had a hysterectomy too, and all of a sudden (7 years later) my legs look lumpy. I take a low dose of estradiol. The more I take, the more it interferes with my thyroid. It’s like I’m always “chasing” one after the other.
Has your dvt gone away?
How is female connective tissue (1) more lax within compartments, but also (2) more fibrotic between?
Am I understanding this correctly?
I’m dancing from the happiness here! Minute 12:15 was when mystery solved! I’m skinny, but my lower body has been always a little bigger was a lot of varicose veins, which was not a problem to me until I started to notice that the fat’s texture on my thighs became lumpy and jiggly after a massive increase of muscles “unnaturally” using a very powerful pemf device! I was about to lose my mind, because pemf devices suppose to do the opposite and clean your body from lymphatic waste! But I also know that the slow frequency per second I used at the end of my treatment gets the pemf trapped in the muscle and causes it to inflate thus build muscle rapidly!
I was happy with that at first until I started to look weird and learned about lipedema! I look puffy and firm “to the touch” yet my tissues around the muscles are jiggly and wrinkly, almost as they are getting separated from the rest of my tissues (the fascia expanding explains that) thank you so much! knowledge is a power. The Doctor Who realized that is a genius. I knew it in my heart that it’s the Pemf device but everybody else was telling me it’s not possible.
What PEMF device are you using? Magna wave?
@@wisepati123pulse pro XL. Very powerful device.
My legs look exactly like my mothers with fluid built up around the same knee as hers. I would call that genetic
I have been studying this for awhile it seems to be directly related to connective tissue ehlers danlos chiari migraines etc inflamation etc injury to l45 s1 and cervical instability atlas position and heart and lung and hormonal changes even circadian rythem changes emotional ishues could it be that the vegus nerve is compromised stimulating the parathyroid or thyroid ? Swimming seems to greatly releave it. also albuteral breathing treatment a noticeable difference in a few hours could it be its because its a smooth muscle relaxant ? Letting the jaw drop open and forward and relieving pressure on vegus nerve and more o2 to area when you swim you tend to tilt head back and cold relieves nerve imflamation maybe in chiari it is common in over weight girls because it is not the result of overindulgence but the symptom of pressure on the hind brain could cervical curve correction exercises slow this down or even just a neck brace answer if you can ? Oh and beer pureens maybe its not the toxins but its working on the skeltal muscles myopathy in some folks causing presure on the vegus nerve again over stimmulatingadapost tishue to produce this fluid
Is there an inflammation detector/sensor feedback wearable? Is there something comprable in the sports world?
It’s nice to know why but I would like solutions.
Good afternoon. I follow you often Dr. Karen, my name is Sanja and I'm from Croatia, I was diagnosed with Lipedema last year. Can you translate it so I can understand it better? Because here, our doctors don't know anything about it. L.P
Možete li preuzeti aplikaciju koja će prevoditi govorni engleski na pisani hrvatski kako biste mogli pratiti? Google ima jednu, a postoje i druge tvrtke ovdje u državama koje nude aplikacije za prevođenje.
Yes I’m from Olean NY I have lipedema on top of my legs and lymphedema on bottom of my legs
Thank you for this phenomenal presentation.
Are Cardiologists contributing to your work yet please?
I think of the body like a swimming pool. If the swimming pool pump is not working properly what happens to the swimming pool water?
Need to identify the cause
I have Ehlers Danlos. How do I get my doctors to understand this. I have genital lipedema.
Only the upper part of my thighs are painful and fat. There is just a cottage cheese look to my inner thighs but compared to other people my legs are thin and I have tiny ankles.
I don’t like this -
I can’t get anyone to acknowledge.
It’s very painful.
I did have to have breast reduction that were huge and painful.
After than I got painful 43:23 pockets of fat on my back.
I had a hysterectomy and for years have a noticeable large under the skin cyst about the size of a plum and to the right is a clear shelf where above is looking swollen and it is painful.
No doctor understand this.
I have 8 autoimmune conditions.
Have you heard of the carnivore diet?
I am also an EDSer with lipedema (and dysautonomia). It's a hard combination. As another commenter recommended, maybe check out the carnivore diet. I did it for 2 years (I now do modified version, as extreme low carb was really hard on my dysautonomia) but it did reduce my lipedema size by a little, and it reduced my lipedema pain almost completely. For me, daily antihistamines (an h1 and h2) actually caused me a 25 lbs weight loss as well as SEVERAL inches from my thighs. It changed my life.
The hysterectomy maybe was the stress that caused this all to occur. Hormone related just as with puberty, pregnancy, or menopause.
I've noticed that my skin is very thin compare to that of other women my same age .i also have red tiny moles . I'm very intollerant to heat . Have low blood pressure
Is there any connection to anticardiolipin/antiphospholipid antibodies?
How does that explain lipedema in arms and other upper body places?
Upper body fat is Lipodema. Lower body is Lymphodema.
No no its not like that? Maybe I came in the last aeroplane, but I was the pilot. Plain pilot.
Some people can have/get Lipedema (Lipoedema) in both the upper and lower body. I do. I have it everywhere, unfortunately and I also have Lymphedema (swelling) 😔
If the oressureis in a muscle compartment, shouldn't the CPK be elevated?
I was thinking the MTHFR could be part of this if not the cause.
A low fat diet many years did change the size of my legs making them thinner. What that signifies. Im not sure
Thank you so much...!..I think inflammation can be caused by heat therapy..ie hot water bottles that alot of women use for menstrual cramps...and puberty/hormones...Thanks Dr. Herbst for this extremely well explained - Excellent!!.!
Is there any studies on statins especially Crestor causing lymphedema and lipedema?? It started with in both legs muscle weakness , cramps , hamstring pain, swelling, weight gain., and pain.
Does anyone know of a Doctor or Health Practitioner who understands this in Melbourne Australia pls?
Winston Salem NC 😮😢❤❤❤😊
Any doctor here in Winston-Salem?
would this relate to the higher pressure found in muscles of fibromyalgia?
283😢177🎉😊😢
What if you have all the symptoms of Lipodema but also have swollen feet and hands?
Vicki Bomsta Puyallup, washington
Is anyone using a vibration plate and see results? I just purchased one hoping for good results.
I was getting my spider veins treated and was told that I have a lot of “feeder” veins and that would make it harder to treat. I had a terrible time with the compression stockings, paid $100 per pair and my thighs were so huge they would rip them on the first wearing. I’ve talked to a few doctors about my legs before but never got any feedback. I’m pretty sure I have lipoedema but the only doctor in my area who treats it is very expensive if insurance won’t cover it.
I have had literally a hundred or more feeder veins injected as well as the great and small saphenous in each leg. It's an expensive, painful process. My insurance didn't pay for a lot of it.
@@1ashlybruc1 can I ask what's the name of the treatment you had for the veins? Thanks!
How do you all deal with the mental and emotional part? I bawl over how my body looks. I can't look at it in the mirror. I hate my looks. I lived as just a thick beautiful woman all my life until around 2016, it all got worse. My thighs have huge bags. I have it all over...entire legs, stomach, upper arms, hips, thighs, waist to ankles and I believe in my huge, misshapen breats. I used to be known as the pretty girl, could get any guy. Now people look at me in disgust. I try so hard to find my worth in God and remember He is what matters. But I have several other health issues too, on a cane now. I just am so depressed. How do you all deal with it??? I cant lose any weight no matter how I try.
Is it the margarine, fake butter, hydrogenated oils in the body? The body doesn't know what to do with it..
Bingo!!!!!!
The residual Nickel in the hydrogenated oils (it's used as a catalyst) seems the more likely culprit to me, I wonder how many here also have problems with Ni (allergy or otherwise), as one of the ways the body "deals" with Ni is to store it in fat... and from personal experience, when I loose some fat, my Ni-associated chronic conditions flair and my fat gets extra angry, just like when I ingest the nickel...
I became keto 1 year ago and my liphedema improves a lot. I am trying with carnivore diet now for 2 months and I am even better.
Is the tactile medical pump good for Lipedema also?
Is there a link between fragile x carriers and lipedema?
I lost a kidney to my dercums 2002 does this add to the inflammation and superstitual toxins and perhaps thats why im so sensitive to everything and breakout, allergy, tons of mucus all ams ??
1:10:03
Question :- would the GLP1 antagonists drugs help with lipoedema fat loss?
Nothing but an anecdote, but I’m on Semaglutide. Started at a BMI of 22, now at BMI of 20. Trying to reduce my disproportionate arms. I can see my ribs and entire pelvis now, but my arms still have hanging thick fat.
@@annemarie3811You lose your normal fat but not the ‘diseased fat’ - Lipedema
Ashley Black always says to start out slow.
Hello from baltimore md
I might have recently gotten lipodema, it is still undiagnosed but seems to symptomatically align, it started swelling from these horrible creeps Hammon P who stalk where I live and spray chemicals all around the immediate area while I am sleeping.
I’ve had skinny muscular lower body my entire life. Suddenly correlation to creeps spraying very toxic chemicals (they are bullies trying to force me to move) nearly every night.
Thank you Karen Herbst for this very informative video and to the commentators sharing useful insights.
How does the MTHFR gene work here? I have a mutation of one of them.. I know I have lipedema
I wish I could have seen the entire slides instead of the presenter
Is it possible for long-term steroid use induce Lipedema?
Anything that can cause or trigger a hormone imbalance can contribute to Lipedema. Lipedema is known to may be caused by hormonal shift at some point in life.
Need resources bad!!
What is the best email address to send a medical question to Dr. Karen Herbst ?
Can treating varicose veins cause lipedema?
Interesting question. I was wondering if the lipoedema causes the spider veins. I started getting them when I was 19.
Lymphatic parasites…ever looked at some similarities in elephantiasis . What happens when the worms die in the the lymphatic vessels .parasites evolve , so why can there not be one that have evolved to infect those in the western areas .
Leptin resistance as a marker?
Have lipedema and lymphedema from taking statins.
I wonder if there are many female divers who regularly wear a wetsuit with lipedema?
Alabama
Oops sorry put in wrong the place i guess..sorry
It is inflammation caused by the attitude of hating your own fat and wanting to separate it from you… it goes hand in hand with body dysmorphia.
Body dysmorphia is when others suffer a hurt and blame themselves, developing toxic shame, instead we blame our appearance. I would have been loved we say, except I am ugly, fat, husky… unattractive.
We separate our self from our body and are comforted that it was only the body that was unacceptable. But this damages the body over time. Given this it is no surprise so many people with this are getting liposuction… finally to get rid of the hated fat. But you could change your mind instead.
Correlation is not causation. It's not attitude
Did you listen to the lecture? Listen again Mam. It is not a love yourself problem.
🙂 'PromoSM'