Lipedema My Story

My Lipedema Story – Part 9 – Managing Lipedema

June is Lipedema Awareness Month – I’m sharing my story to help raise awareness.

In my previous article, I shared how the Carnivore diet reversed a long list of symptoms I was experiencing and gave me the motivation to want to live again. In this article, I will provide an update on my current Lipedema status and how I am managing the condition on the Carnivore diet.

While the Carnivore diet did not cure my Lipedema, as there is currently no cure for the condition, it had a significant impact on my body and helped me lose the normal fat that I couldn’t shed before. It also helped me control the swelling associated with Lipedema. Managing Lipedema involves identifying inflammation triggers, reducing swelling, and addressing normal fat accumulation, all of which the Carnivore diet has helped me achieve.

In 2019, I was diagnosed with Stage 1 Lipedema, specifically type 3 and 4 with the type A shape. This was before my second pregnancy and hip replacement; my weight was 185 pounds. As I write this article, one of my doctors believes I am now in the early stage 2 of Lipedema, and my current weight is 179 pounds. The Lipedema progressed after giving birth or the hip replacement, particularly in my arms, stomach, legs, and left hip. However, the Carnivore diet played a significant role in helping me shed the baby weight and even more, the ankle cuff that was slightly visible in 2019 is now completely gone.

It has been six months since I started the Carnivore diet, and I promised to share my results. Unfortunately, I didn’t take any before photos because I had grown accustomed to not seeing any noticeable changes in my body. However, I did manage to capture a few screenshots from a video I had. By comparing these images, you can see the visible difference in how my clothing fits. I have visibly lost inches all over, with the most noticeable change being around my torso. Although the Lipedema pocket in my abdomen is still visible, I have lost the fat around it. It is worth mentioning that Lipedema fat distribution is irregular, and my arms still remain quite large, preventing me from fitting into many of my old clothes. This irregular distribution is a characteristic of Lipedema.

The two photos on the left are BEFORE photos and the two photos on the right are my 6 Months Carnivore Photos. In my after photos, you can see the larger leg on the left (my right), and larger hip on the right (my left). I am wearing a compression bra in the after photo. Prior to Carnivore I wore 16-18 or Size 1 pants. I wore size 1 tops and dresses. I’m now size 14-16 pants. The size of dress and top depends on the cut or style. My arms are still large, so some shirts or dresses I have to size up to fit my arms. I have some Torrid 0 and 00 shirts and dresses that fit, but some are too big. I have some XL shirt that fit and some are now too big. I was in XL leggings, but they are all too loose and no longer offer any compression. I was in a 38 or 40 band size with my bra, but now I’m 34-36 band size. I’m feeling like my old self again.

I achieved these results without engaging in any exercise, just chasing around my toddler. Which astonishes me as I have never experienced such significant changes in my body without heavy exercise.

Now, let’s discuss some of the strategies that have been helpful in managing Lipedema. I’ve linked to some products that I find helpful. I am an Amazon Affiliate, and I may earn from qualifying purchases. This doesn’t increase the price, and it helps me pay for my hosting fees. I would never recommend anything I don’t love.

Compression

Compression garments play a crucial role in managing swelling and pain associated with Lipedema. There are different types of medical compression. It’s important to find the right compression for your body.

In my situation, wearing compression in different areas can cause fluid to accumulate in other areas. For example, If I’m only wearing calf compression, this leads to fluid buildup around the knees. While compression on the legs may result in fluid pooling around the hips. Similarly, wearing compression up to the hips can cause fluid to pool in the abdomen, and so on. Wherever my fluid pools, Lipedema seems to progress. Although compression provides relief, it’s equally important to address the dietary factors that contribute to swelling. For me, that’s Carnivore – it seems to have stopped the swelling flares.

Compression garments can be uncomfortable and can feel suffocating when worn on the entire body. However, going without compression can lead to increased pain and swelling. Personally, I experience a feeling of heaviness and difficulty climbing stairs when I don’t wear compression on my legs. Wearing compression helps alleviate some of these difficulties and reduces pain.

Due to the irregular distribution of fat caused by Lipedema, some women will need to be measured for custom fit compression. Custom fit compression and any of the really good compression is expensive, but sometimes insurance may help with these expenses.

I’ve been buying CzSalus and it has worked well for me.

Some days I prefer to wear non-medical compression. Putting on medical compression takes time, and sometimes I don’t have the time, but I need some compression. For those days I love Blanqi Hipster Compression Leggings. Blanqi leggings are expensive, but they are very high quality and last a long time. Blanqi is offering $20 off for new customers with my referral code. Once you are set-up as their customer, look for these leggings: Blanqi Hipster Compression Leggings. They are amazing and even have pockets!

Compression is also beneficial for those of us with Ehlers-Danlos Syndrome (EDS) because it improves our proprioception.

If I’m not wearing medical compression, I will wear Shapermint undies to help prevent it from pooling in my tummy. Then I wear Shefit bras to prevent swelling in my breasts and found them beneficial for my posture. They are high quality sports bras and they have wide bands.

Lymphatic Pumps

In addition to compression, lymphatic pumps are another useful tool for reducing pain and swelling caused by Lipedema. After my hip replacement, I noticed significant swelling around the hip area. Given that a hip replacement can damage the lymphatic system, I was concerned about Lipedema progression and developing lymphedema. I shared my concerns with my doctor, and she agreed that a lymphatic pump could be beneficial in helping reduce the swelling. However, when I tried to order the pump, my insurance denied the request, stating that I needed to go on a diet first. While I acknowledge that diet plays a role in swelling, it was important for me to address the lymphatic fluid buildup resulting from the hip replacement surgery.

Earlier this year, I consulted a new vein doctor due to pain in my left calf and Veinous Insufficiency. The pain would usually subside when I wore compression garments, but it would return as soon as I removed them, sometimes even causing discomfort while lying down. The doctor agreed that a lymphatic pump would be helpful for managing my Lipedema and possibly helping the pain. He contacted Tactile Medical, a company specializing in lymphatic pumps. Tactile Medical measured me for a pump and allowed me to try the Flexitouch. To my delight, after just 15 minutes on the pump, the pain in my leg disappeared and hasn’t returned.

While I was excited to receive the Flexitouch pump, my insurance denied the request and approved a basic pump from Tactile instead. Although the basic pump helps keep fluid out of my legs, it squeezes my legs and arms for an extended period, causing pain and cramping on my replacement side. Consequently, I am unable to use the machine for long periods due to the discomfort it causes. Furthermore, the basic pump does not cover my hips, abdomen, breasts, and armpits, leading to fluid accumulation in these areas. When the fluid accumulates around my left hip, the replacement side, it becomes painful. The Flexitouch pump, on the other hand, provides coverage for these areas, facilitating the effective removal of fluid. With the help of my vein doctor and Tactile Medical, we are working towards submitting another request for the Flexitouch pump.

Lymphapress is another great lymphatic pump company, but my insurance did not cover their pump.

Vibration Plates

Vibration plates are another helpful tool for moving lymphatic fluid, similar to exercise. They offer various health benefits and can assist in combating the progression of Lipedema. I personally recommend the Lifepro brand, as they provide high-quality vibration plates at reasonable prices.

Prior to my hip replacement I was unable to walk. The vibration plate helped get my blood and lymphatic fluid pumping, while sitting on it. A vibration machine stimulates your muscles in a pattern of rapid contraction and release. These micro-engagements improve tone and strength, encourage blood flow, and increase your overall range of motion. 

Here are some quick links to Lifepro Vibration Plates – I personally love my Lifepro Rumblex. Their percussion massager is great too. Using massage guns on our Lipedema area can help with fibrosis and tight muscles. Lifepro is a brand I highly recommend and I paid full price for all the products I’m recommending.

Swimming & Water Aerobics

Swimming is an excellent form of exercise for managing Lipedema as it alleviates pressure on the joints, and the water acts as a natural compression. I particularly enjoy water aerobics and eagerly await the reopening of our local pool so I can incorporate it into my routine again. In the future, I hope to have a swim spa, allowing me to adjust the temperature to my preference and use it whenever I have free time.

Here’s a great book on Amazon from Legs Like Mine: Aqua Therapy for Lipedema & Lymphedema

If you like water aerobics or walking in the pool, but your feet hurt, try these shoes: Ryka Hydro Sport Cross Training Shoes. They are nice and light, but very supportive.

Rebounding

Rebounding is a great exercise for managing Lipedema because it gets the lymphatic fluid pumping. Rebounders are the mini trampolines. When I first considered getting a rebounder, I was worried it would feel harsh, stiff, and squeaky. I found a brand I really like called Leaps & Rebounds. It’s has great bounce to it and they have the option to add a bar, which I know a lot of Lipedema women love. I have one without the bar. I had to stop using it due to my hip dysplasia, but I hope to use it again soon. You don’t want to jump on it, just lightly bounce. If you do not have any mobility issues, there are some fun workouts on Youtube. I recommend getting the 48 inch if you want to do more than just bounce and do the workouts. The extra space allows you to do a variety of jumps.

Bellicon is another popular brand that has great bounce, however, they are a lot more expensive.

If you have kids, it’s a great way to keep them entertained too.

Manual Lymphatic Drainage (MLD)

Manual Lymphatic Drainage (MLD) is an effective way to stimulate the movement of lymphatic fluid. However, it requires finding and paying for an MLD therapist. Although I tried MLD for a while, it was challenging to go consistently due to my parental responsibilities and other appointments. This is why I am interested in having a lymphatic Flexitouch pump at home, as it would allow me to perform MLD more frequently.

You can also learn to do some MLD on yourself. Here are some videos from Klose Lymphedema Certification.

Lipedema Reduction Surgery

Finally, one of the options for managing Lipedema is to undergo liposuction with a surgeon who specializes in Lipedema reduction surgery. Unfortunately, many insurance companies categorize liposuction as cosmetic and overlook the fact that Lipedema is a painful condition that hinders our ability to enjoy life. This perception is frustrating and can be traumatizing for individuals living with Lipedema. Moreover, the added weight resulting from Lipedema can exacerbate joint problems, particularly for those with Ehlers-Danlos Syndrome (EDS). Consequently, many women with Lipedema end up requiring knee replacements. It is my belief that if insurance companies approved Lipedema liposuction, they could potentially save money in the long run by avoiding the need for costly knee replacements, which in many cases, can cost more than Lipedema reduction surgery.

However, even if someone can afford the surgery or obtain insurance coverage, it is crucial not to rush into surgery without first identifying all of the inflammation triggers. Without addressing these triggers, the Lipedema could spread again.

I have not had surgery, but in my case, my previous “healthy” diet, which consisted of what I was told were healing plant foods on an anti-inflammatory diet, was actually contributing to inflammation and Lipedema progression. While it may have been an improvement compared to my diet in my 20s, it became clear that plant foods were not suitable for me. It took me several years to figure this out.

It is worth noting that Lipedema management involves a combination of dietary changes, compression garments, lymphatic pumps, vibration plates, swimming, manual lymphatic drainage, and, in some cases, liposuction. While liposuction can be an effective solution for many, it is important to approach it with caution and only after addressing all inflammation triggers. It is my hope that insurance companies recognize the importance of approving liposuction as a medical necessity for individuals with Lipedema, considering the significant impact it can have on their quality of life and overall health.

In my next article, I will delve deeper into Lipedema and share additional insights and experiences.

NEXT: My Lipedema Story – Part 10 – Oxalates – The Healing Blossom

Lipedema – The Healing Blossom

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