Lymphedema, diabetes, medication... with pics, please help!
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KnitOrMiss wrote: »www.chrismasterjohnphd.com has a great podcast called the Daily Lipid - and he's got a lot of the info there that I stole out of the last keto summit. I'm also supplementing with MCT oil, and it's been interesting going so far... I hope the specialist has some great info, but I'd totally be reading EVERYTHING I can get my hands on to go into the discussion well armed!
Going there right now! Thanks for the link.
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Please excuse my interruption here as I have no experience in this, but I do believe this video is something that every doctor should watch - maybe repeatedly until it sinks in to their arrogant little minds.
https://www.youtube.com/watch?v=IhkLcpJTV9M
This not some quack or outlyer. He is a well respected leader at the Cleveland Clinic which attracts people from all over the world. We have got to stop treating symptoms and start treating the underlying causes.1 -
One more butt in from someone with no experience, but this may be relevant. I know you are LCHF, but if the issue is fat retention in your legs, perhaps it is because of the type of fat. Our foods have been inundated with oils that are high in omega 6 fatty acids which lead to inflammation and low in omega 3 (and to a lesser extent omega 9) which can reduce inflammation. Perhaps looking closer at the fats you are eating and making some modifications there could help. There are many resources to find on this topic. This is one that I think makes it pretty easily understood with lots of references to actual studies rather than the articles that are clearly just someone's opinion.
https://authoritynutrition.com/optimize-omega-6-omega-3-ratio/
Any change in the ratio of the types of fatty acids you eat will take some time to have any effect. However, it sounds as though you are open to any realistic option. This seems like a realistic and logical option. Unfortunately, logic doesn't always pan out when tested. Just look at the whole notion of "eating more cholesterol will raise your blood cholesterol" myth. However, my experience is logic generally leads to the right conclusion.1 -
The ketovangelist podcast recently did an episode on lipedema and lymphodema - some links on this page might be of interest:
https://www.ketovangelist.com/episode-76-leslyn-keith-treats-lipedema-with-keto/4 -
I, also, don't have direct experience with this, but the recommendations include compression garments and lymphatic massage. These are small starts that may also point out whether it's fluid or fat.1
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@cstehansen thank you for your input, all help is very welcome.
Dr Hyman is awesome, great video.
Your point re fats makes a lot of sense. Unfortunately I am not even certain if the problem is fats. The endo thinks it is fluids and has exams to back it up. I've been searching online and while it looks like a massively underdiagnosed problem it also looks like no one is really certain how to manage it. Mostly it's "compression and drainage might help". And I haven't seen "cure" mentioned anywhere.
This is a very old problem, it has been with me since my early teens. And it has been worsening all my life, until I started LCHF. 20 years ago I had liposculpture on both legs, between the ankles and the knees, the doctor said there was "no fat left in the ankles". If anything, the ankles got bigger and less responsive to rest after that.
There is a genetic component to the problem, several women on my mother's side had it (skipped her generation though). All my life I ate barely no fat at all, I never liked the taste or texture of fat. And being a vegetarian for 30+ years, what little fat I had was vegetable. So the unbalance you mention was certainly present and probably contributed to the evolution of the disease. But most of the fat I eat now is of animal origin except for the occasional olive oil or coconut oil. And I take omega 3 supplements. And yet after the improvements in the first year everything has stayed more or less the same.
I'm going to take the steps that look logical to me:
1. Be even more careful with any food that might cause inflammation and avoid them like the plague.
2. Continue to supplement Omega 3s, Curcumin and Collagen to help the body fight inflammation and improve skin condition.
3. Start regular drainage.
4. Start using compression garments.
5. Be very, very patient.
And keep researching and learning from the experience of others. What else can I do?
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@ambergem1969 @kmn118 you posted while I was typing the previous reply, thank you both.
Going to explore that link now.
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I'm late to the party here but kudos for improvement and being brave. I did not read every post so if this was said, my apologies. There are massage therapists out there who specialize in lipidema/lymphodema and can really help. Have you gone that route?
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I have no personal experience with this, but just want to send good thoughts your way! Certainly massage and compression garments can't hurt the situation. Many years ago there was a televsion documentary and those were the only two items mentioned in the program.1
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RowdysLady wrote: »I'm late to the party here but kudos for improvement and being brave. I did not read every post so if this was said, my apologies. There are massage therapists out there who specialize in lipidema/lymphodema and can really help. Have you gone that route?
@RowdysLady I have done massage/drainage treatments before, both with therapists and with pressure boots, with mixed results. I feel immediate relief in the heaviness but it doesn't stay, next day it is back to the same. But that was before LCHF and my woe was very inflammatory (vegetarian, heavily grain based) so I'm hoping that maybe now it will have better results.
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@supergal3 thank you for your support. I'm going to start compression garments, I've avoided them before because I imagine them to be hot and uncomfortable but Winter is coming so that's a good time to try it.
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Strangely, some of my typed comments did not post, and some that were edited out are back in my comment. Anyhow I thought this was a very useful site too: https://diseasetheycallfat.tv/
https://youtube.com/watch?v=U5DSCUxa720
https://youtube.com/watch?v=g1ThhD6s7rY1 -
I am having REAL TROUBLE with posting on the Community the past day & a half. Editing is not working well for me. Here is more to add to the above post.
Strangely, some of my typed comments did not post, and some that were edited out are back in my comment. Anyhow I thought these were very useful sites too: https://diseasetheycallfat.tv/
https://youtube.com/watch?v=U5DSCUxa720
https://youtube.com/watch?v=g1ThhD6s7rY
https://youtube.com/watch?v=vXb52irzsGc
https://youtube.com/watch?v=yxbaI_1tV_Y2 -
Just sending love and support, and hope you find the answers you are looking for x<31
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@canadjineh thank you so much for those links, going to explore now!
@kiwiapplepear thank you for taking the time to write, it means a lot to have support.
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I too am impressed with your post. Kudos to you.
I don't know much about it, but there is a small discussion on it on the main board: http://community.myfitnesspal.com/en/discussion/10475889/lymphedema-lipedema#latest1 -
Thank you for the link @nvmomketo. It's always good to find others with the same problem.
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@KetoGirl833 - Any updates on how you're doing??? Any more information or good leads on treatments?1
