Although millions of women are affected, even in Germany, there is little knowledge about the disease in medical circles. The symptoms are similar to those of obesity and are therefore often misclassified. It is therefore difficult to accurately diagnose, treat and gain social acceptance for lipoedema.
We want to shed a little more light on the subject and shed some light on fat distribution disorder. To do this, we made an appointment with two affected women and Shakti Mat testers testers. To hear their stories, to better understand the disease and life with it and to test the help of acupressure for lipoedema.
Content
1. Britta and Madelaine tell their story
3. tips for people with lipedema
4. the Shakti Mat to help with lipoedema
Britta and Madelaine tell their story
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 lipoedema since I was ten years old. I was diagnosed in 2017. That means I was 34 years old then. That's a very long time, of course, but unfortunately it's not unusual. Because many people my age feel the same way.
Madeleine: My name is Madeleine Tiede. I am 26 years old and have suffered from lipoedema since I was about twelve years old. However, I was only diagnosed 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 visit friends. I quickly realized that my legs were always tired and exhausted very quickly. I was regularly in a lot of pain. But you just couldn't really put your finger on it. I am now in stage 3, type 4 they say. This means that my arms and legs are severely affected.
Madeleine: I was diagnosed in 2015 because I came across the condition in a TV report. But I had already been told many times before that it was certainly something pathological because my upper body didn't match my lower body.
I then went to see a doctor with my sister Cheyenne, who had similar symptoms. After some initial research, we secretly went to the phlebologist in Kiel, where we faced the facts and were actually diagnosed with lipoedema.
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 is lipedema?
Britta: Lipoedema is a chronic fat distribution disorder that mainly affects women. It often occurs during important changes in the body - especially when you reach teenage years, when you become pregnant, when you go through the menopause. In general, it can be said that the body undergoes hormonal changes. Lipoedema can virtually break out during such changes, 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 imagine the feeling of lipedema like a suit of armor around your legs that slowly gets tighter and tighter. Over the course of the day, the legs retain more water and the pressure builds up.
Yes, or like this game 1000 pins. Sometimes it's like that too. Especially when you're sitting down, for example, and a pet runs across your lap and you feel this pinpoint pain. Unfortunately, it stays for quite a long time. It takes a while before you no longer notice this pinpoint pain.
You work with others who have lipoedema through your Instagram account @brittaliebt, but also in your job.
Britta: My channel is very much about lipoedema. But also a lot about self-love and 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. I've come a long way to be able to say that today. But today it really is true.
What do most of them have in common? What are their concerns and desires?
Britta: In principle, the question is always: How will things continue with me? So how severe can the lipedema become?
I always like to say that when you get the diagnosis, everything comes crashing down on you. You're in a "lipoedema bubble", as I affectionately call it. You often don't even realize that good things are yet to come. At first you think that's it now. But that's not the case. You can do so much for yourself!
Many great women who have done a lot for their bodies and themselves have already proven this. I'm not just talking about sport and nutrition. I also mean strengthening their mindset and doing 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 about 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.
Tips for people with lipoedema
Britta: My tip is actually always: you get the diagnosis. Let it sink in and take a few days. Grieve sometimes and be angry. Be emotional. Take the right to be really angry. But then tell yourself: And tomorrow we'll get back to work!
Staying at home and being angry about everything won't get you anywhere. Don't just seek medical help. (Of course, a good doctor who looks after you is the be-all and end-all!) In addition, depending on the findings, a good physiotherapy 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 be-all and end-all! Especially in combination with compression - in a really well-fitting compression garment, especially if you have been diagnosed with lipoedema or lipoedema-lymphedema. It's so incredibly important: if you rest, you rust. That applies once again! And we can do a lot.
If you're not so comfortable moving "on land", go into the water. See if there is a trampoline near you. The motto here is not to jump, but to swing. Make sure you have a bike. I love my elliptical trainer, for example.
What techniques and methods have you tried so far to treat lipedema?
Britta: I've already tried a lot of things. First and foremost the super trend hula hoop. I don't think I'll ever be the biggest hula girl, it doesn't work as well as it might for other women. But that's okay. You don't have to be able to do everything.
For me, the trampoline with the swinging is actually really great. Everything actually worked in theory. But you have to find something that you can stick with and that you enjoy. Otherwise you give up. Of course, I have lazy days too.
Madeleine: Well, of course I started wearing compression stockings back in 2015, but I didn't wear them regularly at first because it's just not comfortable and you really have to get used to it.
I also had lymphatic drainage from the start. After about a year, however, I stopped because our doctor at the time said: "If we have well-fitting compression stockings, we don't need manual lymphatic drainage."
Then I had my first operation last December, on the front of my thighs. Since then I've been having active lymphatic drainage again. And, of course, continuous compression stockings.
As I said, I didn't always wear them at the beginning. But since the winter of 2016, I've worn them every day. Only in exceptional cases do I not wear them for a day. However, I regret that straight away because my legs immediately start to retain water again.
The Shakti Mat to help with lipoedema
Madeleine tested the Shakti Mat extensively and discovered that the tips may look a little dangerous, but they have a very relaxing effect.
How did you feel about the Shakti Mat 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 bit scared of the Shakti Mat at first. I was curious, but I was really scared to lie on it because I'm not a flyweight. I was afraid that it would dig into my back. That's why it took a lot of effort at first and I tried it with a top on so that I wouldn't feel the pain directly on my 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.
Would you recommend others with lipoedema to try the Shakti Mat 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 our paths can be as individual as we are. After all, if it works for me, it doesn't mean that 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 the Shakti Mat 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's a great way 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 delighted that you are taking on the topic of lipoedema, that you are supporting these wonderful women - with or without lipoedema - and providing so much information! This is more important than ever these days. We simply 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 that the individual stories of Britta and Madeleine have given you an insight into dealing with LIpedema.
What are your experiences with the Shakti Mat and lipoedema? Let us know and share your experiences with others in our Facebook community!
About the author
Jasmin is a passionate content creator - with a business mind. As a German-American, she grew up in Franconia, experienced bed bugs in the Big Apple, survived paragliding flights in Argentina and lost her heart to creative Berlin. She is fascinated by cultures and their peculiarities and is interested in a sustainable and healthy lifestyle as well as the topics of futurology, digitalization and the phenomenon of how trends emerge. She has also been bitten by the yoga bug for a few years now. That's why she always takes her yoga mat with her - for example on countless road trips through Europe with her boyfriend, her little cocker spaniel and hopefully soon with her own camper van.
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