PAIN AWARENESS MONTH

September is PAIN AWARENESS MONTH and according to the US PAIN FOUNDATION this year’s initiative is #solvepaintogether 

Exploring the experience of #chronicpain 

Diagnosis > Treatment Plan > Advocation

Lets begin #changingthepainequation

What is the journey like for those of us living with chronic pain? 

We know diagnosis of #lipedema can be challenging, even though first diagnosed in 1940 at the Mayo Clinic.

Figuring out what treatments work best for us can take years of trial and error, and even when we get a great treatment plan going, things like #menopause can throw a monkey wrench at us.

Discovering who we are with Lipedema is extremely challenging, and can be quite overwhelming. But there is no cure currently so we have to work on how living with lipedema looks like to each of us.

Through the journey we become amazing advocates for not only ourselves, but for our #lipedemacommunity too.

That has been what it is all about, coming together. We are #strongertogether and we will #solvepaintogether too.

Check out the US Pain Foundation for more info on how you can get involved.

#lipedemafitness members and friends let’s start by sharing tips on managing pain. #meditation combined with #vibrationplate has been a big help for me these past couple of months of dealing with an inflammation surge.

Lipedema, Inflammation and Dry Eyes, Oh My!

Earlier this month I shared how abruptly coming off Wegovy (due to insurance denial) caused an inflammation surge in my body, and one of the results was a very painful Dry Eye flare up.

It was so painful. If you have not experienced it before, For me it feels like something is in my eye that I cannot get out, tears streaming down my face, I couldn’t keep the eye open as it gets super sensitive to light, causes a nasty headache, and my eye feels so swollen, and inflamed, just plain ouchie, in all the ways.

I was surprised when I researched inflammation and dry eye syndrome - that there was indeed a connection. I read they even describe dry eye syndrome or dry eye disease (DED) as a vicious cycle of inflammation.

I had learned about DED during perimenopause a few years ago.  Did you know DED is a common symptom of menopause, due to the hormone changes we experience? Like 61% of us, common.

But nobody was talking about possible connection to lipedema, or more specifically, living with chronic inflammation. 

I’ve been more aware of inflammation since menopause, as it has been showing up more in my body, and also in my face/head. The almost overnight inflammation reduction with Wegovy was one of the first things I experienced. So having the inflammation come flooding back, and going through some very painful, seemingly unconnected symptoms, has made the last month extra challenging.

Thankfully the Lipedema Community had great suggestions for DED relief - from supplements, to moisture drops, to the Bruder Eye Mask - thank you delirious4dolphins for recommending it 😍 I purchased the mask and added it to my nightly vibration/meditation self care routine. 

The mask is a moist heat compress that I microwave for 20 seconds on a small plate, and then place over my closed eyes, and it feels really nice. Very soothing. It gets a little too hot right out of he microwave, so I just massage it in my hand for a few seconds to cool it down.

The warmth of the mask causes the oils in our meibomian glands to flow, the oils are the outer protective layer of our tear film that keeps the tears from drying up too fast. Which also helps reduce inflammation and bacteria, which are, you guessed it, common causes of DED.

When you take the mask off, your vision can be blurry (their website says that is due to the oils flowing), it does clear up in a few minutes. But was alarming at first.

Grateful to our lipedema community. Sharing things we deal with, and what we find helpful, is so important, even when we think they may not be connected to lipedema. I realized after purchasing this mask that it is the same mask my eye specialist recommended (number one recommend DED treatment by Optometrists) when I was initially dealing with dry eyedness during peri menopause, I even found the original one in my bathroom closet, but the way delirious4dolphins described it in her comment on my Instagram post made such sense.

Didn’t think I could add more to my nightly self care routine, it is already jammed packed with vibration plate, meditation, deep breathing, self MLD, big 6, etc., but the mask is such a perfect match. It is so soothing and makes the self care routine more enjoyable. 

Rebounding MODs

We know #rebounding is a wonderful way to be active with #lipedema and #lymphedema - even gentle bouncing (where our feet don’t leave the surface of the trampoline) is really good for our #lymphaticsystem and is gentle on our joints.

If you have balance issues adding in a support bar to hold on to is a great MOD, and most manufacturers have them. 

Maybe your balance or mobility require you to be seated, then sitting on a #yogaball or #stabilityball is a wonderful MOD, and they make them super heavy duty now (I’ve seen some are anti-burst up to a 1000lbs).

But did you know you don’t need any equipment? 

You can bounce on the floor with just your body. Many like doing it barefoot, but in cute sneakers like these gorgeous green #cariuma sneakers is good, too. Or whatever brand you like. You can hold on to your kitchen sink or bounce in a doorframe, if you need more support.

In addition to helping move our lymphatics, gentle bouncing can improve our cardiovascular health, strengthens bones, pelvic floor, and muscles and it releases endorphins!!! 

People ask me do I wear compression and sneakers when rebounding, and my personal preference is yes to both. My legs need the support of my compression and it gives my muscles something to work against, and my feet and ankles need the support of my sneakers. 

Others may choose not to wear their compression and/or sneakers and keep all shoe to determine what is best for each of us. But if you bounce on a trampoline without sneakers the surface may be slippery with compression but not hey make grippy socks and those are recommended by the trampoline companies to prevent slipping/falling.

Do you bounce? What is your favorite song to bounce to? Mine still has to be #dancemonkey it is a great cadence for me. But I really need a new rebounder, the squeak of mine distracts me too much, or my family if I have headphones on 😂😁

Another one of my favorite bouncing MODs is in the pool!!!

What is Heel Drop?

I’ve been doing research into new sneakers, ever since my favorites #brooksrevel made a huge change a couple years ago, and became uncomfortable for me to wear. 

What I liked about them was the lower back (as most sneakers cut into the back of my ankle cuff), the less cushion (too much cushion feels unstable to me), and how much my foot pitches to the side (supination) and forward/backward. The revels were great, very stable, didn’t cut into my ankle and flat enough that I could walk and do squats in them. A great fit.

When they changed, my foot started to feel like it was rolling outward. And I felt unbalanced and my knees took the brunt of it. Not good with knee instability.

In learning more about the way the shoe positions my foot, I read a lot about  #heeldrop 

Heel drop, heel to toe drop, shoe drop, it is all the same - it is the difference in the height of the heel of a shoe vs the height of the forefoot (front) of the shoe. 

It is not about the level of cushion a shoe has (that is called the stack), the drop is more about the angle of the shoe. And by adjusting the drop you can improve your comfort, and possibly prevent injuries and falls. 

Zero drop is like walking barefoot, it is totally flat. Low drop is 1-4mm, mid drop is 4-8mm, and high is >8mm.

The average drop on sneakers is 10mm, and that is because most runners are heel strikers. Their heels come into contact with the ground first. A higher drop helps to shift their body weight to the forefoot.

Higher drop may also help if you have plantar fasciitis, Achilles and calf issues, too. 

A lower drop is good if your forefoot hits the ground first, it helps shift the weight to the heels. Lower drop is also good if you have knee and back pain. 

But remember the force of the movement has to go somewhere, ease in to the movements if you make a change in your heel drop. 

This new shoe, the #hokatransport talked about stability and balance, a shoe for commuters (lots of walking). It has a low back, lower drop, and not super squishy looking. 🤞🏻 

Stay tuned for a review once they come in!

#newseakers #sneakerhead #sneakers #walking #mobility #lipedema #lipoedema #lipolymphedema #lipedemafitness

Lipedema and GLP-1 Month Two

The following is my personal experience on the GLP-1 medication, Wegovy, and its impact on my #lipedema symptoms.

This is not a recommendation for this medication, it is my experience after several months of research, and discussing with my primary doctor. 

It was not an easy decision, but after menopause caused my lipedema symptoms to progress, and mobility challenges began, I felt like it was worth it for me to try this medication for the #antiinflammatory and #antifibrotic properties, in the hope it would help.

I had no side effects with the .25mg dose in month one, so my doctor moved me up to .5mg in month two. You can read about my first month here.

Month two on #wegovy continued with the reduced inflammation I experienced in the first month, and due to that continued inflammatory reduction, I began noticing my gait was improving. 

I believe this is due to my inner thigh lobules reducing and causing my posture when standing to improve. I am standing more upright (due to less tissue between my thighs pushing my body out of alignment), which takes stress off my inner knees (woo hoo)!

The inner knee pain is not gone, but it has started improving. I can stand a bit longer and my gait is improving.

I have noticed some new pain in my legs that I believe is due to the posture shift, I think this new pain is due to my muscles and tendons not being used to supporting my body in this more upright position. 

New pain can be scary. It can feel like the new thing you are trying is making you worse. So it really requires you to tune in to your body & pay extra attention to what changes you notice. 

One adjustment I made last month was extending my cane up a notch, because I was standing taller, I needed a taller cane. This has helped with the new pain. 

One of the injections had a small drop of blood after I was done, and an immediate bruise. While it was alarming, I did speak with some friends who have had this happen, even with their nurse doing the injection, so I was reassured it was nothing to worry about.

I was to start month 3 at 1mg tonight, but new insurance = new prior authorization, which has stalled my next month. Stay tuned.

UPDATED: One of the great things about sharing our experiences, is others share theirs, and it reminds us of things we may not have been paying attention to. Two things came up in the comments on this post in Instagram in just one day - Have I noticed and Fibrotic Tissue changes? and Heat Rash Improvements.

Fibrotic Tissue: someone asked if I had noticed any changes, and while I have not noticed changes to the individual lipedema nodules, I have noticed changes to the hardened area behind my ankle cuff, on both sides. This area has always been extremely sensitive (hits shoes and is very painful) and due to the stiffness of that area due to fibrotic tissue, I have a difficult time trying to soften it with massage, vibration, etc. I noticed today in my morning massage that the area is softer! I was able to massage in some magnesium cream and also my lower legs seem to respond more to the vibration plate I've been doing every evening (along with my meditation, self MLD, Big 6 routine, etc.). I'll definitely be keeping closer watch on that.

Heat Rashes - in the warmer months I would easily get raw heat rashes in the fold of my skin. I pay special attention to those areas and make sure to keep them extra clean and dry during the hot months, and just realized even with all the extreme temps we have been having for the past month or so, I've gotten zero heat rashes. At a time I should have been having more not less. So the question becomes, is it due to the reduced inflammation, or is something else going on in my body due to the medications? Either way, I'll take it. It was always very painful when those would occur. I know another friend who was susceptible to cellulitis infections said those all stopped when they went on the GLP-1 meds. That is huge, like life saving change.

When is it Too Hot to Workout w/ Lipedema?

Being able to get out to the park every Saturday has been one of my biggest goals. It has changed over the years as my mobility has shifted from almost none, to walking and doing as much as I want, to needing a mobility aid since menopause. 

The heat is not my friend and the summer months are brutal for me. 

So when it gets so hot outside, like today, I have to question if going to my outdoor workout in the park is a good idea for me. 

Let’s start with zero desire to get into my compression when it’s this hot. I’ve grown ok with wearing my 30-40 knee highs every day, but workouts require more support and more compression, and that goes from toes to just over my chest. Sports bras are big time challenges - I need the support but the nodules in my ribs can be too painful to wear anything too tight. It becomes a battle to find the perfect sports bra that is supportive, but not too tight.

I did not want to put anything on today. At 7am it was already too hot. But since I’ve been working from home, getting out is less than I would like, and I truly love being able to get to the park. So I charged my personal fan, packed ice cold water, and wheeled Helga to the shade of my favorite tree. 

The mugginess and triple layers of compression made breathing challenging, so slowing down was key. 

My biggest focus is not over heating. And thinking of the positives… The warmth felt good on my muscles, they relax quicker in the warmth of the sun, which makes fascia massage easier, all part of the ground work I do before and after every workout. The sky was a beautiful blue with white fluffy clouds, and the smell of the grass was lovely. I watched a lady bug drying out her wings, as I did push-ups right next to her on my mat. 

I’m glad I got outside (first thing) so I could enjoy the park and get grounded emotionally and physically. 

Hope you all had a happy Saturday and found fun ways to stay cool. Oh and the workout was rope flow transitions (moving from one technique into the next), I even incorporated some sit to stands while swinging the rope.

9th Annual Lipedema Triathlon - June 29, 2024

June 29 is the 9th Annual Lipedema Triathlon

Pattie Cornute, Founder of Lipedema Fitness, started this event when she couldn't find a Lipedema 5K to participate in. Inspired by the LE&RN virtual 5K for Lymphedema she participated in, Pattie decided to create a virtual Lipedema 5K, when she could not find one to participate in.

Pattie wanted to incorporate the pool into the event, because many in the community use it to stay active (the pool is easier on their bodies, and the water has a natural gradient compression effect), and the 5K quickly turned into a Triathlon with the help of her coach, and one of her training mates, who was an Ironman with lots of experience.

The local YMCA in Pattie's town agreed to host her and her training mates, and has continued to host them every year, with the exception of the pandemic, when the gym was closed. 

It is a Worldwide Virtual Event

From the very beginning, Pattie wanted this event to be open to everyone, no matter their physical abilities. As someone with late stage Lipedema, she knew the challenges that some of the community faced, she began calling it an All Or Something event - which means you can do all of the event, or some part of it, whatever that looks like to you. 

Another way to open it up to as many people as possible, was to make it a virtual event - so you participate from wherever you live. You can talk to your local gym, in your neighborhood, or do it in your own home. Since the beginning we have had participants from all over the world taking part in this event. From places like Australia, England, Scotland, the Isle of Man, and this year we even have someone from Africa and Japan!

The first part of this event is a 750M swim...

The reason the swim is first leg of a triathlon is due to safety. You would think it would be easier (more convenient) to have the swim last, especially if you wear as much compression as those with Lipedema do, but trust me, you become tired doing 3 back to back portions of this event, and the last place you want an injury or to cramp up, is in the water.

🏊‍♀️ How many laps is a 750M swim if swimming in a pool? 

That depends on the size of your pool - In the pool at my local YMCA (which is a short course Olympic pool) I need to do 30 length of the pool.

🏊‍♀️ How long does it take to complete the swim?

That depends on the swimmer. For me it is around 30 minutes. The kicker is I have to then shower off the chemicals, dry off really well, so I can get into fresh compression, and get all my workout gear on - this takes me longer than the swim itself, and counts in my overall time - if I was being official.

The second part of this event is the Bike…

Safety is also the reason the Bike comes second in a Triathlon. Outside of potential injuries, traditional outside racers would be a nightmare to have all starting/ending at the same time (for tracking purposes). Most of our local participants use stationary bikes, but we do have some that take off for outside rides. Coach plotted a course right from the YMCA. 

🚴🏻‍♀️ How many miles is a 20K?  It is 12.4 miles.

🚴🏻‍♀️ How long does it take to complete the bike?

That depends on the cyclist. For me it is around an hour. I started bringing my iPad to the event and use the Peloton app, picking (2) 30 minute rides seems the best for me. I love the artist series for motivation and been reviewing all our Friday Night rides to find my favorites. Two separate rides also gives me a chance to hop off the bike and stretch a bit, staying in the same position for too long can be extra challenging with Lipedema.

The third & final part is the Run/Walk…

The reason the Run/Walk is last in a triathlon is because it is the safest movement.

👟 How many miles is a 5K? 

It is 3.1 miles.

👟 How long does it take to complete the run/walk?

Again that depends on the participant. For me it used to be close to an hour, but as I transitioned through menopause that grew longer and more challenging, until last year I moved my 5K into the pool and used the aqua walking lane for my walk! It was fantastic, and since the water acts like compression, it really helped ease my legs and recovery was so much better.

How Can You Modify It? Short Answer, Anyway You Like!

Some participants get friends and family to help with the number of laps/miles, or they take multiple days to build up to the full distances. Some choose to do one leg of the event, just the swim, just the bike or just the run/walk.

Some other MODs (modifications) we have used over the years are:

• A rowing machine, or stand up erg, for the swim
• Peloton or stationary bike, or a Cubii (under desk elliptical) in place of riding a bike outside
• Mowing the lawn, or an underwater treadmill (someone did that last year), for the run/walk

All modifications count, we are an #allorsomething event!

We created this event to help spread Awareness for Lipedema &
the Importance of Staying Active with the condition.

Signup for the 2024 event HERE. You can sign up for any part of the triathlon you would like to, you can sign up a team to each take on a portion, or combine your efforts in any way that works for you. The goal is spreading awareness and having fun with the #lipedemacommunity 

THANK YOU TO OUR SPONSORS & PRINTER:

Juzo Compression and Brenda Viola of Vici Communications

Thank you to Jewel from Crafted with TLC, LLC - a Lipedema patient owned business

You can purchase event merch to help spread awareness!

#lipedema #lipoedema #lipolymphedema #lipedemafitness #lipedemaawareness