A new ultrasound study suggests that chronic lower-limb edema may be linked to measurable changes in the Achilles tendon, plantar fascia, pain, and everyday leg function.
Oh this is useful - as my lipoedema 'blossomed' so did the pain under my foot and inner calf. Although to be fair my feet always ache after being on them a long time, but used to reset over night. Until it didn't... Anyway with blossoming lipoedema in pregnancy and peri, the radiating foot throb became grounding, as in seeking to not be on my feet, or means pushing through every step with pain and also working on movement to build and stretch foot muscles and calves. Finally after moving house and taking three nights of pain killers to do the daily basics, I broke out the MJ pen that had been in my fridge for 5 weeks, that the DR and I thought might help. Now this stuff has been magic - I felt crap and achy for 4 days, then from day 5 what I can on ly deceive as significant life change occurred - there was marked reduction in swelling and I came home from doing 1.5x my normal daily steps, with no foot pain and spritely. I went to the gym after work as I had energy (and no pain). Over 9 weeks I have noticed that I have not been getting swollen lower legs and subsequently had such reduced foot and inner calf pain and at times no pain (which used to increasesas lower legs would swell over the day). This has opened up accessing more movement naturally, actual motivation to move (when your legs are not heavy and you drag them around I guess this happens), and given me back joy, vitality and a lot more life quality as I never know legs could feel so good.
This is very interesting, Carla. Would you be open to sharing your story on LipedemaScience? I would really love to hear more about your experience.
My calves became extremely swollen in 2018 during a period of intense stress, and that continued until I eventually had surgery. I really want to hear more stories like yours because I think there is so much we can learn from each other.
Looking back, I think I would definitely have tried something like this before surgery, at least for a period, to see if I could get my body back into a calmer state again. Surgery is so invasive, and if I had found another way to reduce the swelling, pain and inflammation I experienced after such a prolonged stressful period, I would have wanted to explore that first.
For me, it felt like a cascade reaction to everything happening in my life. Food Science was an incredibly demanding laboratory-based degree. We were in the lab from morning until afternoon, writing lab reports in the evenings, and then I had to work alongside my studies during the weekends. My life was extremely stressful, and my body did not handle that period well at all.
The connection between swelling, pain, stress, movement and how your body responded to treatment is so interesting… That is why your story really caught my attention.
Happy to share it. My lipoedema really went off after a workplace trauma incident which broke me, combined with covid mandates and not knowing if my husband would lose his job. So that’s another huge layer of stress that I raise my eyebrows to if it was part of ye switch that flipped?
I cannot thank you enough for sharing this. I immediately subscribed to your substack as soon as I read your excellent summary of the academic study. I am a PhD-level researcher and retired academic and want to extend kudos for your efforts here.
I am 53yo, stage 3 (diagnosed in person by Karen Herbst), all types. A year ago, I had lipedema removal surgeries and brachioplasty. I am having more surgeries later this year. When Herbst did my ultrasound diagnosis, she noted that the lipedema tissue had eaten away at most of my fascia. That explained my chronic plantar fasciitis! I was shocked.
But after I had my surgeries (full 360 legs, trunk/abdomen 360, arms), I developed Achilles tendinopathy. I wasn't sure if it was because I was wearing compression so much or if it was just a side effect from the surgery. It's been making me crazy! It's bilateral and maddening.
Once I read this, though, I realized -- my chronic inflammation is probably the culprit. Damn you, lipedema! <shakes fist>
It's the gift that keeps on giving, right?
Thank you for posting your thoughts on the article and noting so carefully the limitations of the study and that correlation does not equal causation. Despite those things, it sure does help me better understand what's going on with my heels and tendons, and I am grateful. Sharing with my primary care doc and my podiatrist and with Dr. Herbst!
Oh wow, Alice. I would absolutely love to share your story on LipedemaScience.
I really admire the work of Dr. Karen Herbst. Back when I was going through my own surgery journey, I watched her webinars over and over again and learned so much from them.
One of the reasons I started LipedemaScience is that I feel a lot of the information we see on social media has become a little too black and white. I want to bring more nuance into the conversation, especially when the science is still developing and we don’t have all the answers yet.
At the same time, I absolutely love that lipedema has become so visible on social media. After I was diagnosed, I went four years without hearing about another person with lipedema. I felt completely alone. The younger Carina who was desperately looking for a community would have loved what exists today..
But I also think that visibility comes with a responsibility. Sometimes the claims become a little too certain, dramatic or clickbait-driven, and that is where I want LipedemaScience to be different 🤩
Oh this is useful - as my lipoedema 'blossomed' so did the pain under my foot and inner calf. Although to be fair my feet always ache after being on them a long time, but used to reset over night. Until it didn't... Anyway with blossoming lipoedema in pregnancy and peri, the radiating foot throb became grounding, as in seeking to not be on my feet, or means pushing through every step with pain and also working on movement to build and stretch foot muscles and calves. Finally after moving house and taking three nights of pain killers to do the daily basics, I broke out the MJ pen that had been in my fridge for 5 weeks, that the DR and I thought might help. Now this stuff has been magic - I felt crap and achy for 4 days, then from day 5 what I can on ly deceive as significant life change occurred - there was marked reduction in swelling and I came home from doing 1.5x my normal daily steps, with no foot pain and spritely. I went to the gym after work as I had energy (and no pain). Over 9 weeks I have noticed that I have not been getting swollen lower legs and subsequently had such reduced foot and inner calf pain and at times no pain (which used to increasesas lower legs would swell over the day). This has opened up accessing more movement naturally, actual motivation to move (when your legs are not heavy and you drag them around I guess this happens), and given me back joy, vitality and a lot more life quality as I never know legs could feel so good.
This is very interesting, Carla. Would you be open to sharing your story on LipedemaScience? I would really love to hear more about your experience.
My calves became extremely swollen in 2018 during a period of intense stress, and that continued until I eventually had surgery. I really want to hear more stories like yours because I think there is so much we can learn from each other.
Looking back, I think I would definitely have tried something like this before surgery, at least for a period, to see if I could get my body back into a calmer state again. Surgery is so invasive, and if I had found another way to reduce the swelling, pain and inflammation I experienced after such a prolonged stressful period, I would have wanted to explore that first.
For me, it felt like a cascade reaction to everything happening in my life. Food Science was an incredibly demanding laboratory-based degree. We were in the lab from morning until afternoon, writing lab reports in the evenings, and then I had to work alongside my studies during the weekends. My life was extremely stressful, and my body did not handle that period well at all.
The connection between swelling, pain, stress, movement and how your body responded to treatment is so interesting… That is why your story really caught my attention.
Happy to share it. My lipoedema really went off after a workplace trauma incident which broke me, combined with covid mandates and not knowing if my husband would lose his job. So that’s another huge layer of stress that I raise my eyebrows to if it was part of ye switch that flipped?
Anyway today I’ve done 19k steps - no dragging legs. Amazing 🤩
Do you want to do a live - jump into the DMs. We can work something out 🏆
I would love to share your story here on LipedemaScience, Carla! 🤩
I cannot thank you enough for sharing this. I immediately subscribed to your substack as soon as I read your excellent summary of the academic study. I am a PhD-level researcher and retired academic and want to extend kudos for your efforts here.
I am 53yo, stage 3 (diagnosed in person by Karen Herbst), all types. A year ago, I had lipedema removal surgeries and brachioplasty. I am having more surgeries later this year. When Herbst did my ultrasound diagnosis, she noted that the lipedema tissue had eaten away at most of my fascia. That explained my chronic plantar fasciitis! I was shocked.
But after I had my surgeries (full 360 legs, trunk/abdomen 360, arms), I developed Achilles tendinopathy. I wasn't sure if it was because I was wearing compression so much or if it was just a side effect from the surgery. It's been making me crazy! It's bilateral and maddening.
Once I read this, though, I realized -- my chronic inflammation is probably the culprit. Damn you, lipedema! <shakes fist>
It's the gift that keeps on giving, right?
Thank you for posting your thoughts on the article and noting so carefully the limitations of the study and that correlation does not equal causation. Despite those things, it sure does help me better understand what's going on with my heels and tendons, and I am grateful. Sharing with my primary care doc and my podiatrist and with Dr. Herbst!
Oh wow, Alice. I would absolutely love to share your story on LipedemaScience.
I really admire the work of Dr. Karen Herbst. Back when I was going through my own surgery journey, I watched her webinars over and over again and learned so much from them.
One of the reasons I started LipedemaScience is that I feel a lot of the information we see on social media has become a little too black and white. I want to bring more nuance into the conversation, especially when the science is still developing and we don’t have all the answers yet.
At the same time, I absolutely love that lipedema has become so visible on social media. After I was diagnosed, I went four years without hearing about another person with lipedema. I felt completely alone. The younger Carina who was desperately looking for a community would have loved what exists today..
But I also think that visibility comes with a responsibility. Sometimes the claims become a little too certain, dramatic or clickbait-driven, and that is where I want LipedemaScience to be different 🤩