MANY women suffer with lipedema, impacting their self-esteem, affecting their weight and making them feel hopeless. Consensus until recently has been that liposuction is really the only “cure”. By trying to really understand how it develops and progresses, I'm hoping to figure out how to holistically target it to not just prevent progression, but improve symptoms.
Not medical advice, not a professional, talk to your doctor etc etc. I'm coming up with my game plan based on what I have written here, and I’m sharing it in case it can help others!
Here's what I've learned:
Stage 0.
From birth, we overproduce fat cells in certain areas of subcutaneous adipose tissue (SAT) due to our genetic mutations (we lack genetic features which put a brake on the process), and at the start, that's all it is- thick-looking legs. But at some point in life when fat cells rapidly grow and multiply e.g. puberty or pregnancy, we start to see problems caused by this imbalance in adipogenesis (fat creation), characteristic of...
Stage 1.
Fat tissue needs to be accompanied by new vasculature (like any other organ/tissue) in order to supply it with oxygen. But our capillaries are abnormal due to genetic differences in our connective tissue (as an aside, most of us have diagnosable hypermobility), including our blood vessels. Essentially, our capillaries are fragile with poor elasticity and much more permeable than normal.
Unfortunately, blood pressure for all mammals is highest in the legs. Since our leg capillaries are fragile with poor elasticity, they experience even higher blood pressure and it doesn't take much for them to burst. I'm sure you bruise easily... if only that was the only problem. They dilate to try to cope with the high pressure, but they're really bad at constricting again (poor elasticity), hence many of us also have a condition called POTS.
But the permeability is the main issue- we leak fluid from them into the 'interstitial space' like crazy. That fluid is supposed to get absorbed by the lymphatic capillaries in the area and shuttled away to be cleared out of your body, but that's a whole a lot of strain to put on the system, so it runs a little slow. Small amounts of fluid hang around in your legs, small enough that you may not even notice it, and if you do, it's generally fixed by elevating your legs to help out your lymphatics. Your skin is smooth, you don't think there's much of a problem other than that your legs ache a lot.
But even those small amounts of fluid are a problem. Cells in your body called cytokines start sending out a warning signal that this is happening, which causes white blood cells to flood to the area and cause inflammation. In response to the inflammation, your subcutaneous fat cells start to undergo numerous harmful changes (remodelling), including becoming much less metabolically responsive- they refuse to be accessed for lipolysis. Some areas of inflamed fat form fibrosis around them in an attempt to repair themselves- a hardened outer layer, which you can start to feel as little nodules which may be as small as grains of rice. If this inflammation becomes chronic, it leads to...
Stage 2.
The chronic inflammation is incredibly damaging. It causes insulin resistance, especially in the abnormal fat, impacts on mood, increases pain and discomfort, and reduces mobility. All of these things further promote fat accumulation, growth of fat cells and, of course, the growth of the fibrotic nodules.
Inflammation and fat expansion also reduces oxygen supply to the cells (hypoxia), resulting in acidification (peroxidation), which promotes fibrosis, and increased oxidative stress- at this point, areas of your fat may be noticeably cool to the touch due to hypoxia. Hypoxia causes hardening of the nodular fibrosis and the fat becomes even more metabolically inert. You notice that your fat is dimpled like a mattress and if you do not have obesity in other areas of your body, it's becoming clear to you that this is not normal fat. This becomes even clearer as you progress into...
Stage 3.
As the cycles of inflammation, fat expansion and hypoxia continue, the nodules begin to adhere to each other and to your healthier fat tissue, creating large, lumpy, painful masses. Your skin begins to thicken (fibrosis) and you start to develop large, visible folds of skin and fat, which may protude and put pressure on joints as well as harming your mobility and balance. The loss of elasticity in your thickened tissues reduces blood and lymph flow, causing the tissue to grow, and the inflammation and fibrosis begin to cause serious damage to your lymphatic vessels.
Your body is supposed to grow new lymphatic vessels and strengthen existing ones in response to inflammation, but oxidative stress has reduced your rate of autophagy (that's when your body kills off damaged cells to allow the nutrients to go to healthy ones and to building new tissues), and so your body is unable to do this, ultimately resulting in...
Stage 4.
The edema accumulates, since it can no longer be transported away from the area, and you develop lipo-lymphedema, or lymphedema secondary to lipedema.
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Okay so it paints a pretty grim picture, BUT it does tell us what sorts of things we need to target holistically in order to slow progression and improve symptoms, and avoid surgery for as long as possible. I've tried to split them up into broad categories.
Reducing and preventing inflammation.
• Insulin resistance (which promotes inflammation) can be improved by restricting carbohydrates, strict intermittent fasting (18/6) and weight loss. PPARy agonists (cinnamon, clove and cacao) can promote insulin sensitisation.
• Cytokine signalling which tells the white blood cells to come and make inflammation can be significantly dampened by supplementation of MCT oil daily up to 20ml (but start much lower).
• Suppressing the NLRP3 inflammasome also suppresses the release of cytokines, and can be achieved via restriction of carbohydrates and supplementation with DGL liquorice.
• Adiponectin activates anti-inflammatory factors and reduces proinflammatory cytokines. Levels of adiponectin can be increased through daily omega 3 intake, myo-inositol, whole-day fasting and mild to moderate exercise (preferably water based, walking only with compression support), as well as through including gingerol, turmeric and capsaicin in your diet.
• Vigorous aerobic exercise and overexercising should be avoided, as it actually promotes chronic inflammation (and lactic acid + oxidants, causing further damage).
Reducing oxidative stress and improving lymphatic function.
• Increasing autophagy through intermittent fasting can circularly reduce oxidative stress in tissues and improve lymphatic function.
• Supplementation with short and medium chain fatty acids (MCT oil and apple cider vinegar) provides energy directly to the mitochondria without having to first pass through a damaged or overworked lymphatic system. The mitochondria are then more able to improve & create new lymphatic vessels.
• Hyperbaric oxygen therapy can help stimulate the growth of new lymphatic channels.
• Activating microcirculation (which is damaged by inflammation) increases the oxygen supply to tissues. This can be promoted through supplementation with B-complex vitamins, butcher's broom, ginseng, horse chestnut, witch hazel and omega 3 fatty acids (always check for drug interactions). It can also be promoted by hyperbaric oxygen chamber therapy, dry brushing, and consuming tea (black or green), and by massage.
• Promote oxygen supply to the area with anti-oxidants. Diosmin (with hesperidin) is an antioxidant which is excellent for capillary health- it increases the total number of functional lymphatic capillaries, improves frequency and intensity of lymphatic contractions, improves lymphatic drainage, supports microcirculation, and increases venous tone and venous elasticity.
• The fluid which leaks from blood vessels should be addressed at every stage of the disease with combined decongestive therapy (CDT). The best daily protocol is 30 minutes of vibration therapy (oscilating vibration plate) to improve venous and lymph circulation, followed by manual lymphatic drainage by a professional or 20 minutes simple lymphatic drainage at home to clear out the fluid, and then compression. CDT can actually strengthen your blood and lymphatic vessels.
• With compression, aim for moderate (15-20 mmHg) at night and up to 30-40mmHg in the daytime.
• Elevation of your legs reduces strain on the lymphatic system to shift the excess fluid.
• Compression pumps can promote lymph drainage and may improve SAT quality, reducing fat fibrosis (pantsuit type is recommended).
• Gentle swimming or water aerobics promotes lymph drainage and feels GREAT on your legs.
Preventing and lessening the changes in SAT.
• The damaged fat is metabolically resistant, but the metabolic shifts that occur from burning glucose to burning fat on a ketogenic diet may reduce this.
• Include antifibrotics in your diet- turmeric, (european) blueberry, coffee, CDE, resveratrol, quercetin and EGCG.
• Manual lymphatic drainage releases lipid peroxidation products from tissues, mitigating the effects of oxidative stress and helping to prevent further fibrosis.
• Textured elastic compression garments (either non-medical grade or custom flat knit) can provide a gentle anti-fibrotic effect to hardened skin, SAT, and nodules. PitPaks or chip foam quilted compression pads may be placed inside of compression garments you already own to address hardened areas of tissue. Bulkier quilted compression with more irregularly textured filling, such as chipped foam, foam strips, or cherry pits, can be useful, but are best suited to wearing at night or during pneumatic compression treatment.
• Vitamin E supplementation can mitigate the fibrotic effects of lipid peroxidation.
• Massage & manipulation targeting SAT remodeling. Quadrivas is very effective in reducing number of nodules and their fibrosity, as well as leg volume, but is difficult to access. Deep tissue massage techniques, such as myofascial release, or the Chinese massage technique of Tui Na, have similar effects. Percussive massage guns may be of some use.
• Astym therapy, Graston technique, and compression reduction techniques have been shown to reduce fibrosis in lipedema fat and increase blood flow to the tissues.
• Cupping negative pressure massage in the direction of lymph flow may remodel SAT in lipedema- vigorous treatment produces hematomas (bruises), but after several weeks, tissue tightens and skin becomes smoother. This may be through activation of stem cells in connective tissue, or regeneration triggered by injury giving rise to more stable and functional tissue.
• Far infrared radiation (FIR) reduces fluid buildup, reduces inflammation and improves microcirculation. It's also anti-fibrotic to hardened skin and possibly fibrotic fat tissue at higher intensities. You can actually buy a device for at-home treatment.
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Other comments:
In one study, a form of vacuum cavitation therapy, which is non-invasive, produced similar improvements of SAT remodeling to liposuction in women with lipedema, when performed 2x/week over 3 months. The study was carried out by some legit researchers, but only limited information was included in the publication as it was intended to be essentially inter-departmental, and it has never been peer reviewed or had any attempts to replicate it. I may shoot them an email asking for additional information, I'll update if I get a response.
http://lib.pt.cu.edu.eg/11-Zoheiry%20July%202013.pdf
One redditor reports being consistently able to break down the fatty tissue of his girlfriend's genetic lipomas using a hitachi-style corded vibrator. Lipomas have varying degrees of fibrous changes, but they're in the same category as lipedema in being an adipose tissue disorder involving overgrowth of pockets of fat, so it may be worth an attempt when it comes to SAT remodeling, especially if you're going for liposuction and need as many nodules as possible to be able to fit through the cannula easily. On the other hand, it may not be that the fat was broken down at all, just that circulation is improved and her body was able to then break down the lipomas itself.
https://www.reddit.com/r/Lipoma/comments/10mrtdi/update_vibrator_post_no2/
Shockwave therapy may be more effective than manual lymphatic drainage after liposuction for lipedema.
https://www.hindawi.com/journals/ecam/2021/9956879/
Here's a weird set of facts. Short and medium chain fatty acids might also be useful for fibrosis (nodules and thickened skin). Chronic use of exogenous ketones (such as MCT oil) reduces markers of fibrogenesis/fibrotic remodeling (creation of new fibrotic tissue) in the liver, kidneys and heart. Acetone (ACV, i.e. apple cider vinegar) also ameliorates diet induced fibrosis in the heart. Keto prevents fibrosis in the liver. Keto and exogenous ketones are being investigated for use in other fibrotic disorders. The key link between MCT oil, ACV and keto is that they all supply the mitochondria with a lot of ketones. Mitochondrial dysfunction is a characteristic of lipedema, and it all makes me think that we may just have a tendency to create fibrotic tissue, and our mitochondria don’t step in to prevent it. Giving the mitochondria enough ketones may actually prevent formation of new fibrosis and thus progression of lipedema.
We are chronically deficient in vitamin D and may need 4x the recommended dose as a supplement. Vitamin D reduces progesterone, which has got to be helpful seeing as our gene mutation means we struggle to break progesterone down, leading to high serum levels, which has some involvement in our disease.
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