Although millions of women are affected even in Germany, knowledge about the disease is low in medical circles. The symptoms resemble obesity and are therefore often misclassified. Accordingly, accurate diagnosis, treatment and social acceptance are difficult - lipedema.
We want to bring a little more light into the darkness and educate about the fat distribution disorder. To do this, we have arranged to meet with two affected women and ShaktiMat testers. To hear their stories, to better understand the disease and life with it and to test the help of acupressure for lipedema.
Britta Beckmann and Madeleine Thiede have suffered from the chronic disease since childhood. On their Instagram channels @brittaliebt and @lipoedem_schwestern, they report on lipedema, share their experiences and speak encouragement to those affected.
Thank you for taking the time to meet with us. Can you please introduce yourselves briefly?
Britta: My name is Britta. I am 37 years old and have had lipedema since I was ten years old. I got my diagnosis in 2017. That means I was 34 years old then. Of course, that's a very long time, although unfortunately that's nothing unusual. Because many people my age feel the same way.
Madeleine: My name is Madeleine Tiede. I am 26 years old and I have been suffering from lipedema since I was about twelve years old. However, I only received the diagnosis in August 2015.
What is your story with lipedema? When did you realize that something was wrong with your body?
Britta: I noticed very early on that something was "wrong" with my legs. At the age of 10, I noticed that I was getting a lot of bruises and that my legs were always misshapen and disproportionate to the rest of my body.
Especially when I was young - we lived in a very rural area - we had to walk a lot, to friends. I quickly noticed that my legs were always tired and exhausted very quickly. I was in a lot of pain on a regular basis. But you just couldn't really classify it that way.
I am now in stage 3, type 4, they say. So my arms and legs are massively affected.
Madeleine: I was diagnosed in 2015 because I came across the condition through a television program. But I was also told many times before that it is certainly something pathological because my upper body does not match the lower body.
With my sister Cheyenne, who had similar symptoms, I then visited a doctor. After initial research, we secretly went to the phlebologist in Kiel and faced the facts there and actually got the diagnosis of lipedema.
In fact, we did not have pronounced pain symptoms yet, but it was first about the volume of the legs. In the meantime, we have often heard that people have voluminous legs or even arms that do not match the upper body. Both are possible. And then the pain often comes only with time and we can confirm that just as well. The pressure pain only came forward with time.
What actually is lipedema?
Britta: Lipedema is a chronic fat distribution disorder that mainly affects women. Often it's during important changes in the body - just when you get into your teens, when you get pregnant, when you go through menopause. In general, it can be said when the body undergoes a high hormonal change. With such changes, lipedema can sort of break out, if you want to put it that way.
Can you describe the feeling for people who hear about this disease for the first time?
Madeleine: You can think of the feeling of lipedema like a suit of armor that you have around your legs that slowly gets more and more constricted. Over the day, the legs store more water and the pressure builds up over the day.
Yes or like this game 1000 pins. It's like that sometimes. Especially when you're sitting, for example, and a pet runs over your lap, and you feel this pinpoint pain. Unfortunately, it lasts for quite a long time. It takes time until you no longer perceive this punctual pain.
You work with others who have lipedema through your Instagram account @brittaliebt, but also in your job.
Britta: My channel is very much about lipedema. But also a lot about self-love, mindset. What good can I do for myself? I always lovingly say "the one in the colorful stockings who loves life" and that's exactly how it is!
I love myself and I love my life. It was a long way that I can say that today. But today it is really so.
What do most of them have in common? What are their concerns and desires?
Britta: In principle, this is always the question: How will it continue with me? So how massive can the lipedema still become?
I always like to say that when you get the diagnosis, everything collapses on you a bit. You're in a lipedema bubble, as I affectionately call it. Often you can't even see that good things are still to come. At first you think that's it. But that's not the case. You can do so much for yourself! This has already been proven by many great women who have done a lot for their bodies and themselves. I don't just mean sports and nutrition. But also to strengthen the mindset, to do a lot for self-love. That makes a huge difference. Wearing compression regularly and working on yourself holistically.
On your Instagram account @lipoedem_schwestern, you and your two sisters talk about your journey with the disease. How did you come up with this idea and what do you want to achieve with it?
Madeleine: Our Instagram account came on a whim after we decided to start our journey as a threesome and have our surgeries done.
We wanted to use the account to describe the entire journey and, above all, to help others so they can read about what was done step by step or how we got the diagnosis.
We get questions every day about how those affected can cope. We often act as a kind of counselor and comforter and offer encouragement. Because you realize that even in the social media sphere, the community really strengthens.
Do you have any tips for people with lipedema?
Britta: My tip is actually always: You get the diagnosis. Let it affect you and take a few days. Grieve sometimes and be angry. Be emotional. Take the right to be really angry. But then say to yourself: And tomorrow it will go on again! It won't get you anywhere if you sit at home and are angry at everything. Don't just seek medical help. (Of course, a good doctor who cares for you is the be-all and end-all!) In addition, depending on the findings, a good physio practice, a good medical supply store and a very good compression manufacturer.
You talk a lot on Instagram about the role of exercise in your life. How important is exercise for you - especially in relation to lipedema?
Britta: Exercise is the key! Exercise in compression, in a really well-fitting one, with a diagnosis of lipedema/lipedema-lymphedema. This is so incredibly important.
You snooze, you rust. Once again, that's more true! And there's super much we can do. If you're not feeling well enough to exercise "on land," get in the water. See if there's a trampoline near you. Don't jump, swing is the name of the game here. Make sure you have a bike. I love my elliptical trainer, for example.
""See that you get moving, that your body can flow properly again, that you get back in tune with yourself. Movement is the be-all and end-all!"
- Britta
Britta likes to call herself the woman in the funny stockings who loves life. Even with lipedema! Source: https://www.instagram.com/brittaliebt/
What techniques and methods have you tried so far to treat lipedema?
Britta: I have already tried super much. First and foremost, super trend hula hoop. I don't think I'll ever be the biggest hoola girl, it doesn't work as well as maybe other women. But that's okay. You don't have to be able to do everything.
For me, actually the trampoline with swinging is quite great.
Actually, everything worked in theory. But you have to find something you can stick with, something you enjoy. Otherwise you also give.
Of course, I have lazy days too.
Madeleine: So of course I started compression stockings; back in 2015. However, I didn't wear them regularly at the beginning because it's just not comfortable and you really have to get used to it.
I also received lymphatic drainage from the beginning. After about a year, however, I didn't, because our doctor at the time said, "If we have a well-fitting compression stocking, we don't need manual lymphatic drainage." Then I had surgery for the first time last December on my front thighs. Since then, I've had active lymphatic drainage again. And, of course, continuous compression stockings.
As I said, I did not always wear them at the beginning. But since winter 2016 really every day. Only in exceptional cases do I not wear them for a day. However, you regret that immediately again, because the legs immediately get water retention again.
Madeleine tested the ShaktiMat extensively for us and discovered that the tips may look a little dangerous, but they have a very relaxing effect.
How did you feel about the ShaktiMat after trying it out for a few weeks? How was your experience?
Britta: I got the acupressure mat and I'm still not sure whether it's for me or not. It stimulates blood circulation and I react very strongly to it. At the moment I'm not sure whether it's good for me or not. But what does do me good is when I lie on it with my neck.
So when I roll them up and have them in the neck/shoulder area, that's where relaxation comes in. I would have to do it more often though. Nevertheless, I didn't find it bad at all. Only on the whole back I still find it very difficult.
Madeleine: I was a little afraid of the ShaktiMat at first. I was curious, but I was really afraid to lie down on it, because I'm not a flyweight. I was afraid that it would drill into my back. That's why it took me a lot of effort at the beginning and I tried it with a top on first, so that you don't feel the pain directly on your bare skin.
And then I just did it. I put on some relaxing music and fell asleep. I would never have thought that. I had set myself an alarm clock to be on the safe side, because I read that many people fall asleep doing this.
I then woke up and was mega relaxed. Completely detached. From my experience, this is one of the biggest advantages why I praise this mat! Just come down and 10-20 minutes me-time. I find the feeling totally pleasant, as you notice afterwards how the tissue is supplied with blood.
Madeleine relaxes on the ShaktiMat acupressure mat and on the Shakti acupressure Pillow in green.
"I then woke up and was mega relaxed. Completely detached. From my experience, that's one of the biggest benefits of why I praise this mat!"
- Madeleine
Would you recommend others suffering from lipedema to try the ShaktiMat and why?
Britta: Basically, I would always say that trying things out is always better than making hasty judgments. I think it makes a lot of sense to look at everything.
Because as individual as we are, our paths can be just as individual. Because if it works for me, it doesn't mean it will work for someone else, and vice versa. That's why the proof of the pudding is in the eating.
Madeleine: I have actually already recommended ShaktiMat to many friends and acquaintances. Even quite independently of lipoedema. I can't say whether acupressure has a direct effect on lipoedema. But in general, it can help you to calm down, relax, loosen your muscles and bring some relaxation into your everyday life.
Anything else you'd like to add?
Britta: I think your commitment is great and I am glad that you take on the topic of lipedema, that you support these wonderful women - with or without lipedema - and that you provide so much education! It's more important than ever these days. We all have to stick together and therefore a big thank you to you wonderful people!
With these words we would like to thank you for your interest! We hope you have been able to see the individual stories of Britta and Madeleine and gain an insight into dealing with lipedema. What are your experiences with the ShaktiMat and lipoedema? Let us know and share your thoughts with others in our Facebook community !
Sources:
- Carina Rehberg (04 June 2021) Cleanse lymph - holistically Retrieved 27 June 2021 from https://www.zentrum-der-gesundheit.de/bibliothek/naturheilkunde/gesundheitskuren/lymphe-reinigen
- Lymphedema: How to clear lymphatic congestion in legs and arms Retrieved 06/27/2021 from https://www.beuthel.de/blog/lymphoedem-wie-sie-lymphstau-aufloesen
- Lipedema WHEN FAT IS PUT IN THE WRONG WAY Retrieved 06/27/2021 from https://www.blackroll.com/de/wissen/diagnose/hilfe-bei-lipoedem-reiterhosen
- THE LIPÖDEM and what you should know about it Retrieved 27.06.2021 from http://lymphnetz-aachen.com/wp-content/uploads/2015/10/Broschuere-Lipoedem.pdf
- Linda Babst (28.05.2021) Do you suffer from a fat distribution disorder? Retrieved 27.06.2021 from https://www.womenshealth.de/health/beschwerden/leide-ich-am-lipoedem/
- Stiftung Warentest (31.10.2020) Thick legs - no reason to be ashamed Retrieved 27.06.2021 from https://www.test.de/Fettverteilungsstoerung-Lipoedem-Dicke-Beine-kein-Grund-zur-Scham-5664497-0/
- Julia Klinkusch (26.11.202) Lipoedema and nutrition: Foods to combat impaired fat distribution Retrieved 27.06.2021 from https://www.praxisvita.de/lipoedem-und-ernaehrung-lebensmittel-gegen-die-gestoerte-fettverteilung-19351.html
- Antje Kunstmann, Brigitte (31.10.2020) Why the diagnosis is difficult Retrieved 27.06.2021 from https://www.brigitte.de/gesund/gesundheit/lipoedem--warum-die-diagnose-schwierig-ist-12200652.html
- Laura Pomer (July 16, 2020, 04:19 PM) Fat distribution disorder lipedema - causes, treatment, surgery costs Retrieved 06/27/2021 from https://www.stylebook.de/body/fettverteilungsstoerung-lipoedem