tag:blogger.com,1999:blog-4738062031052371885.post8116304622417890706..comments2024-03-17T10:07:53.205-07:00Comments on The Well-Rounded Mama: Lipedema, Part 4: Possible Causes and Associated ConditionsWell-Rounded Mamahttp://www.blogger.com/profile/04129621631406155340noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-4738062031052371885.post-12861315391562526082018-07-08T21:40:16.046-07:002018-07-08T21:40:16.046-07:00I am so sorry to everybody living with lipedema. I...I am so sorry to everybody living with lipedema. I struggled for years with a thin top half and heavy legs since a teen. I have spider veins from under my breasts all the way down to the tops of my feet and varicose veins. I have low thyroid and since last year ( exactly at the same time my legs worsened ) irregular periods(mabye pcos?) I doubt thats a coincidence. I have lipedema in my legs, abdomen and arms. And my legs hurt , more like ache kinda like a painful tingle 24/7. And not to mention the jokes i get about my big legs. I wished more than anything, my whole life, i had normal looking pain free legs. Im 33 and havent worn shorts since i was 13...Oh to feel the summer breeze on my legs would be one of the best feelings in the world.Anonymoushttps://www.blogger.com/profile/06708600432539753576noreply@blogger.comtag:blogger.com,1999:blog-4738062031052371885.post-15949360846540426152018-05-12T06:17:34.143-07:002018-05-12T06:17:34.143-07:00Thank you for the fantastic article. It is great t...Thank you for the fantastic article. It is great to see this condition is gaining some attention, even though a lot more is needed, and as you point out, a lot more studies need to be conducted.<br />While it would obviously not fit the criteria of scientific method, i believe anecdotal evidence could be extremely helpful here, and I often wonder what we could achieve if everyone wrote in about their own experience, tests etc.<br />For what its worth, I was an extremely healthy child, don't recall getting a cold before teenage years, never broke a bone despite lots of rough play, and was never cold, wearing t-shirts in the middle of winter. I was hyper mobile, and my legs, while not fat as a child, didn't have any shape or muscle definition, despite my being a sprinter and very active. My symptoms really progressed at age 40, following yet another bout of stress. I had developed my first autoimmune disease psoriasis at 35, after a prolonged stressful time. At around 40 I developed very sore ankles first thing in the morning for about 6 months that randomly went away, then vitiligo and then hypothyroid. Despite trying lots of diets and high on the vegetables, at 46 I have exercise asthma and sore joints. My vitamin D is always low unless I supplement with >5K IU per day. My iron is within normal range.<br />Good Estrogen is low, while bad estrogen is high, not because I eat a lot or because of plastics but because my liver cleanse function is bad which is genetic. SNPs include homozygous MTHFR A type, also MTR, CBS, VDR (vitamin D receptor), among other such as the one that makes Glutathione reductase, which reduces glutathione (major antioxidant). I think epigentics is definitely an avenue to investigate, and perhaps lipodema sufferers can send their DNA profile to a repository for study...to try to find connections.Dianenoreply@blogger.comtag:blogger.com,1999:blog-4738062031052371885.post-8186095926681369862018-04-18T16:08:56.495-07:002018-04-18T16:08:56.495-07:00@caliente- I couldn’t agree with you more. I’ve b...@caliente- I couldn’t agree with you more. I’ve been trying to find studies to prove this about toxins. I have mold poisoning and have been dealing with fibromyalgia, Haishimoto, hyperthyroid, Lupus, Celiac which were all diagnosed out of the blue while living unknowingly with mold. Clodisporium mold was found in my system. I was just diagnosed by Dr Emily Iker in last month with stage 1/2 lipedema. I didn’t have a sick day in my life and was very athletic. Lipedema also does not exist in my family tree. Would love to talk to you about your research Dorihttps://www.blogger.com/profile/17426898251106031700noreply@blogger.comtag:blogger.com,1999:blog-4738062031052371885.post-10538185806175477982018-02-14T14:29:59.522-08:002018-02-14T14:29:59.522-08:00Really well written post and I am glad I found thi...Really well written post and I am glad I found this website. I do believe the main cause of lipedema and lymphedema is toxin exposure. I have done medical research for over 15 years because of my own medical issues, and we are exposed to so many toxins that we are not even aware of. Heavy metals, pesticides, all kinds of toxins in our air, water, food, houses, businesses, etc. My biggest two are mercury and mold. But I also live in a place where I have been documenting aerial patterns, changes in clouds, changes in weather and flu-like s symptoms people are getting coinciding with it. Who knows what else we are being exposed to and are unaware of. The fact that there is such a dramatic increase of the condition versus even 30-40 years ago tells me it is environmentally caused, (genetic changes take longer) which includes our food and water supply. I already had toxin exposure as a child. Puberty, with the increase of hormones and hormonal changes, increases many medical conditions (autoimmune disease, Autism symptoms, etc.) and add in stressful events, other life changes like menopause...and you have a perfect storm of disease expression. The reason some react and others do not, could be a combination of multiple exposures of different types of toxins the person has been exposed to and their ability to clear toxins. I see even in my own family, I was the athletic one with the least amount of medical issues growing up, but then moved to a much more toxic environment as opposed to my siblings and have since had the most severe medical issues. The assumption that so many researchers make that it is genetics serves a political purpose that I won't get into here, but consider the fact that multiple family members may have a condition is because they all grew up in the same place with the same environmental exposures. I have seen improvement in my condition in two periods of my life when I was able to detox significantly and improve my food, water and air intake. In the last few years, while exposed to the most toxins, my condition has gotten dramatically worse. Toxins clog up the liver and lymphatic system, which is key in this condition. Every potential cause listed as well as concurrent conditions are affected by toxins (and I have multiple conditions listed). I was actually born with very good genetics (very healthy, long life in relatives I take after) but my family was exposed to nuclear fallout, then pesticides, and a host of other toxins, plus vaccinations that had toxins in them... and I started exhibiting health issues shortly after. Gene expression and DNA changes have now been documented with toxic exposures. I was an overly thin child, but when puberty hit, I started to see changes in my lower body. But it wasn't just the adipose issue...other symptoms were going on too, including brain symptoms. I don't know of any study on this that is comprehensive enough to look at all the factors. I know my friend is in a study and is a patient of Karen Herbst, and her study doesn't look at a lot of these factors or delve into things like where you grew up, what exposures you had then, what environmental changes, things that you may not change (like living quarters) but are changing outside of your control (like government testing, pesticide spraying from planes, etc.) We had a huge spraying here for mosquitoes and another for fires...all those things have an impact. I think we so often look at symptoms, we don't address root causes, so it makes treatment that much more difficult. <br />Calientehttps://www.blogger.com/profile/05298265314595154822noreply@blogger.comtag:blogger.com,1999:blog-4738062031052371885.post-6101276631313907502017-09-05T23:17:43.677-07:002017-09-05T23:17:43.677-07:00Actually we did discuss the lymph system in the se...Actually we did discuss the lymph system in the section Abnormalities of the Lymph and Vascular System. We also discuss the lymph system in sister articles in this series. I totally agree that we need much more research on the lymphatic system in general and in how it affects lipedema. Well-Rounded Mamahttps://www.blogger.com/profile/04129621631406155340noreply@blogger.comtag:blogger.com,1999:blog-4738062031052371885.post-69431281495556680052017-09-05T07:09:27.147-07:002017-09-05T07:09:27.147-07:00I'm surprised that this article didn't dis...I'm surprised that this article didn't discuss the one major body system that links most of this together, the lymphatic system. The lymphatic system has three known roles in the body. 1. It controls immune system responses, sending white blood cells and fluids to combat injury and invaders. It tells organs when to pump hormones to properly address the environment. 2. It controls collection of fats the body needs from eating (known as chyle) and transports it to either be used or stored. 3. It collects debris and waste from around the body and gets it to where it can be eliminated. If we surmise that a switch (a genetic defect etc) causes the lymphatic system to fail, we would see errors in all three of these areas. The immune system would go haywire, attacking its own body (autoimmune) or having an exaggerated response to normal things we eat (gluten intolerance). The hormonal system would fail, issuing either too many or not enough instructions. Fat would be stored incorrectly, causing it to become unusable to the body. Waste and debris would build up, causing lipomas to form and sluggish symph flow. This one cause could explain much of what we see anecdotally and explain why there is such variance, since the error might be a little different in each person, just like autoimmune disease is different in each person. Not enough studies have been done about how the lymphatic system works and what triggers it.Terryhttps://www.blogger.com/profile/00936034016654383125noreply@blogger.comtag:blogger.com,1999:blog-4738062031052371885.post-40079641272556013662016-08-19T15:39:06.409-07:002016-08-19T15:39:06.409-07:00Great article...
Having suffered with this conditi...Great article...<br />Having suffered with this condition since the age of 11 I suspected it was related to my hormones! Although a pain my legs started at 8, I noticed my legs where thicker than the other girls in first year of secondary school. <br />My legs defiantly ached more around my period, and I knew I was getting a cod, or cold sore as my legs would start to become painful. <br />Once illness, or my period had finished the pain reduced considerably. To the point I no longer needed Iain killers!<br />I noticed the biggest difference in pain relief, practically pain free after going on a juice only weekend ( Vegtables) cutting out meat, and caffeine and the booze. They encouraged us to dry brush up our bodies towards our heart, and the feeling reduced me to tears. I actually felt like I was milking the fluid up my leg and it was actually moving/fluid. Not solid!<br />I gave continued like this pain free for almost 5 years until now! <br />My suspicions were the new tablet (Cerelle) the doctor has given me to combat the symptoms of the peri-menopause, but I have no idea. It is a man made progestogeon to balance my levels. I feel great with regards the symptoms of menopause but I ace a constant pain JW in my legs! Is this a coincidence or is it linked to too much progestogeon? As anyone else noticed this?<br />I have one other things add, I can't see very well in the dark, and as a 18 month old I was hospilised with sepsis and nearly died. I let all my hair, and mopey immune system took a big hit! Are we missing something in the fact that suffers might be born or develope with a weaker immune system that hinders are lymphatic system? Have we all had a childhood illness? How would we ever know?Anonymoushttps://www.blogger.com/profile/05247632736317966416noreply@blogger.comtag:blogger.com,1999:blog-4738062031052371885.post-51279229777862341432016-04-18T21:51:48.776-07:002016-04-18T21:51:48.776-07:00Hi Joanna,
Would like to talk with you about meth...Hi Joanna,<br /><br />Would like to talk with you about methylation and lipedema connection. <br />Please let me know if you wouldn't mind to discuss this further.<br /><br />Thanks,<br />Mel<br /><br /><br /><br />Melhttps://www.blogger.com/profile/07185428980743899758noreply@blogger.comtag:blogger.com,1999:blog-4738062031052371885.post-41460050081110551292016-03-06T23:24:48.954-08:002016-03-06T23:24:48.954-08:00Thank you for this great article. I was suffering ...Thank you for this great article. I was suffering for years , and just find out it was Lipedema . My vitamin D is 10 which is very low , losing weight is a struggle . Anonymoushttps://www.blogger.com/profile/04718662183723951486noreply@blogger.comtag:blogger.com,1999:blog-4738062031052371885.post-17976261555434713992016-02-08T23:07:17.007-08:002016-02-08T23:07:17.007-08:00Thank you for your thoughtful comment, Jo, and for...Thank you for your thoughtful comment, Jo, and for presenting another possibility to consider! Interesting.Well-Rounded Mamahttps://www.blogger.com/profile/04129621631406155340noreply@blogger.comtag:blogger.com,1999:blog-4738062031052371885.post-90853392697883421572016-02-08T16:08:14.031-08:002016-02-08T16:08:14.031-08:00Thank you for your gathering of possible causes an...Thank you for your gathering of possible causes and for continuing to ask intelligent questions, I very much appreciateI what you have written here. I have this condition but compared to many not badly, but enough to feel how simply awful it must feel as it advances. I have been contemplating the possible causes a lot and doing a lot of research. I would echo everything you say and just add one other possible avenue for enquiry - The territory of genetic polymorphisms. If you are not familiar with this https://www.23andme.com enables your DNA to be tested for polymorphisms that reveal genetic mutations of genes. Some mutations are thought to have no impact but others appear to affect enzyme pathways, methylation pathways and ways in which the body is not fully optimal in its processes and functions and toxic buildup of eg amonia or chronic long term deficiency of key elements eg B12 results. The SNP's (single nucleotide polymorphisms) a person has reveal tendencies towards conditions. Much research and information is being gathered now about this. Lifestyle in combination with these SNP's seems to reveal much regarding causes of unexplained conditions like Lipedema. <br /><br />Anyhow all that aside thank you for your great article and for being open and interested rather than trying to make premature conclusions. Very refreshing. With much warmth Jo<br />Anonymoushttps://www.blogger.com/profile/07119918906999432218noreply@blogger.comtag:blogger.com,1999:blog-4738062031052371885.post-44111394285848882072015-09-11T09:34:04.352-07:002015-09-11T09:34:04.352-07:00A great article and whist it gives no answers, as ...A great article and whist it gives no answers, as least there are some theories that yield hope for some.<br />Anonymoushttps://www.blogger.com/profile/13560921948242249299noreply@blogger.com