Відео

doctors don't look for unusual things like lipedema or histamine load it seems, I haven't seen a Dr since my last drivers medical, I hope never to feel I ever need to again, they only seem to want to know medications and I won't take them.

Been having this since I was 13... I'm 30 and no matter what you do, it just keeps getting worse until you can't walk anymore. That's it. No point in hoping. It's a life of bullying, belittling, solitude (didn't have time to meet a "nice guy" while looking like this since I hit puberty, obviously), excruciating pain, restrictions... without getting anything back for that.

Is there cure for lipedema?

Watching the replay❤❤❤❤

Ok on one hand this sucks. On the other hand I have had worse treatment with a formal diagnosis. More woman are self diagnosed because of the lack of knowledge and care. Things must change.

Is this a part of Ehlers-Danlos?

Makes perfect sense!

Good idea about giving this to nurses. I will also give to my lipodema therapist. (Connie from RGV)

Can't wait to take the one-pager to my GP!!!!

Watching the Replay!❤

Watching you wonderful ladies from Sydney Australia on replay. Thanks for always including us ! yay

Watching on replay

Has any research been done on the advantage of using percussion massagers on the fat nodules? Or the possible advantage of getting deep tissue massage in breaking up fat deposits?

Watching replay. Terri from San Antonio.

watching replay

Thank you very much!

Caught the reply😊

i self-diagnosed, asked for an appointment, sent the pa a note about lipedema. she did the stemmer’s sign check, looked at my legs, said ‘yes, you’re right’ without admitting that she and everyone else had missed it. but she’s filled out the forms for my surgery and supported my recovery, so that might be the best i can get in our messed up system.

Watching the replay today

Drs. have rarely diagnosed anything since AI took over in 2019! The didn't tell anyone they were switching the healthcare system to AI management even after they have spent the past 20 years collecting data for that purpose! Bio digital convergence. Look it up for yourself.

Thank you beautiful

❤❤

Watching from Australia, you are my favourite ladies and I am so happy and grateful to watch your reporting. Dear Catherine you are looking well and I am so pleased to see this to you ! Bless you and all the wonderful Ladies around the world facing this condition.

Same here, it’s sad and frustrating 😢

Exactly

My doctor totally dismissed everything I said and told me I need to see a neurologist.

I have not officially been diagnosed but pretty sure I have this. I’m thinking I started in puberty and I’m now 70 and just realized it. It explains so many of my issues I’ve been dealing with throughout life. It started me down a more holistic path which helped control some of the issues but had no idea what I was trying to treat like wack-a-mole. Been treated with Thyroid but really not much help. Now I find out a on Medicare which will probably not support any treatments. Once a foot doctor told me I had lymphedema and he sent me to PT for it. After a few visits the PT person said , with a puzzled look on his face, I don’t think you have lymphedema. Like so many times I had thought I found an answer only to find out it was not. I have started trying out some of the therapies on my own because I was starting to become quite immobile. It has helped but it’s a roller coaster ride emotionally. If it were not for my faith in God I don’t think I could keep pushing through.

Hi from La Mesa California,,,,,very hot here now.

My mom was thin. But if I look at my paternal aunt and grandmother they had the typical look of thicker arms and legs. Later they developed a larger trunk after childbirth. Could hardly walk in their 80’s due to edema and pain. I’m heading that way at only 50. Never understood why I had a small upper body compared to my hips and legs at 12. After child birth my trunk started growing. It’s very disheartening to diet and diet and still not lose anything in the midsection, arms and upper thighs. I’m trying again with a low carb diet to see if it will help. My feet and legs are in so much pain. And I have developed venous insufficiency. Not to mention I’ve had knee pain since I was 15 and now it’s much worse.

When I get my blood pressure, it’s excruciating. 😢

I am 56 and was diagnosed with lymphoedema 12 years ago. 3 days ago i came across a video on lipedema. I am so very angry that i was never diagnosed with lipedema. I have had symptoms for over 40 years. If i had been diagnosed even 15 years ago, i might have had so much less damage done to my body. Im glad you are going to see a specialist. I'm going to be talking to my doctor next month about my condition again.

I agree.

I have been trying for 20 years now to get diagnosed with fibromyalgia or anything carpel tunnel pulled muscles X-ray after X-ray finally it took a tooth getting pulled and a week in the hospital for my family doctor not the hospital to figure out I have Lupus I cried thanking him now I can get something done right all the meds and I still can’t walk across Walmart I start hurting so bad in my ankles ,back and knees and doctors think I am crazy still when I say something

My doctor knew less than me about Lipødema. But I have been reading very much during some weeks now. So I had allready ordered a time to a spesialist. I am 68. Thanks God that I have a normal BMI, the legs feel heavy and are sometimes during the last half year given me a little pain when I am sleeping. The skin does nok look nice.

Same here😢

So typical.

Hi my systems are very much the same it does not matter how much I lose weight my legs never improve I live in the UK Lipedema is not recognised - My GP sent me to a specialist who tested me for Lymphdema when that came up negative his words to me were"Oh u must just have fat legs" how unprofessional was that - I am now stuck & do not know now what to do now- I cannot afford plastic surgery / I wear compression socks but not much change - I would be interested if anyone has further information!!!!!

You did great but our language to a doctor needs to be: "I have Lipodema, I need to be referred to a specialist." We don't need to say "self-diagnosis."

I’m in central Texas (Austin). This past week has been hot and muggy, and I have had to traipse around in it for my job. I’m just wet and swollen all the time. Ho hum. I don’t have a strategy. You ladies are awesome!

Is there a genetic test for lipodema? I have it and my son has rather large lipomas in his arms and abdomen. I am worried about my granddaughter, neither my son or myself were large children, I didn’t get my saddle bags until puberty and if it is possible to catch it and treat it at puberty.

This also brings to the surface the potential for misdiagnosis of lipedema. I agree the doctor didn't do a thorough exam for official diagnosis. Some doctors seem to always be in a rush and it's not good. Money for nothing and cheques for free.

Good for you ... self diagnosis. Did the doctors add the diagnosis to your medical records? Lipodema causes fatigue and exhaustion. Doctors dismiss women and throw the "depression/anxiety" or "bipolar" label at us.

I want to be part of the “deep dive” group. How do I sign up and connect.?

How do I join the curious explorers?

I freeze ice packs and put them under my thighs in the car. I’ve put ice packs in my arm pits to sleep. So Ore is hot and dry. Hard to wear pressure garments in heat. Thank you for the pool tip!

Thanks for doing these streams every week ladies

Soooooo true! I've changed people's lives with info I haven't applied to self! Ahhhh what a journey...great information so far...

28 minutes in and SO ANGRY that I missed this! I have the arms...Just getting to the point that I'll wear short sleeves...no shorts on these legs. I probably need to do positive body work! I also need to get to know what's happening in my own body...

I hate that she didn't listen to you or engage in more discussion but good for you that she reffered you out to a specialist. Part of me is wondering if the doc even knows the difference between lipedema and lymphodema. Regarding insurance I'd make double sure the right diagnosis code is in your chart. No idea what the code is but...

Sally K Norton's work about oxalates may help.