Tuesday, January 19, 2021

Juggling Lipedema Self Care

One of the things you learn early on when you are diagnosed with Lipedema is that it is considered a Self Care condition.

It is because the treatments are left up to the patient to arrange, to learn what works (and what doesn't), to fight for coverage (with insurance), to pay for out of pocket when not covered, to continually try new things, and to stay on top of the progression of our symptoms, as best we can.

I still remember being at the CLT (Certified Lymphedema Therapist) office after my MLD (manual lymphatic drainage) treatments were finishing up, and asking what was next, and learning nothing!

CDT (complete decongestive therapy), which included MLD, bandaging, etc., which I had been having done in therapy, had been successful, and after I reached a plateau (no more reduction to my measurements) I was fitted for graduated compression, and basically left on my own, as there were no treatments for Lipedema. Come to find out, even the CDT protocol was a Lymphedema treatment, it was prescribed because I had secondary Lymphedema to my primary Lipedema, so it was beneficial for me to have the CDT treatments.

Since then I have experimented over the years, and found many things that help my symptoms; some help ease the pain, some help to keep my lymphatic fluid moving, etc.

The first thing I found helpful was moving as much as possible, it is what started the journey that would become Lipedema Fitness, and if you have read any of my other posts, or followed me on Instagram or are a member of the Facebook support group, you probably know one of my motto's with regards to fitness is ALL OR SOMETHING!

Which is a way to remind ourselves that every movement matters, every step we take, every effort we take, matters, and helps us to stay strong and mobile. We cannot have an All or Nothing attitude, we need to modify that to All or Something.

Well the same motto holds true for Self Care, too.

Fitness is considered part of Lipedema Self Care treatments, but I cover fitness a lot, so this post is referring to things we can do outside of fitness; Self Care items we have discovered over the years that also help our symptoms. 

Some examples include Compression, Cupping, Deep Breathing, Dry Brushing, Massaging, Moisturizing, Pumping, Reiki, Taping, and Vibration. There are also others, but you get the idea.

Self Care can be incredibly TIME CONSUMING, and can be COSTLY. We spend hours (yes hours) every day trying to stay on top of our care, and sometimes it becomes overwhelming.

I've written a post that talks about my typical day here. It will give you an idea of the time commitment for the treatments I do on a regular basis.

So, how do you know what will work for you? Sadly, you don't until you personally try it. Being in a support group and hearing from others what is working for them can give you some valuable insight, but ultimately you will have to try things out, and see how your body responds.

Once you have some Self Care treatments that you find helpful, you then have to see if you can afford them on a regular basis; not just can you afford them financially, but can you also afford the time it takes to do them, and do you have the ability to physically do them, or have help to do them at home?

I have tried so many things over the years, invested a lot of time, and money, seeing how they work for my own symptoms, but I also try them so I can share with my members/followers, so the information is out there for others to find. Sharing is really helpful, so if you try something please consider sharing your experiences in a group you belong to, or as a comment on someone you follow, etc.

I consider myself experienced in Self Care, although there are so many things out there, something new is always coming up (which is a good thing), but I want to share something with you that is important in being able to Juggle your Self Care...

YOU ARE THE BEST JUDGE OF WHAT WORKS FOR YOU!

I think we need to hear that, a Self Care option might be the bees knees to someone else, it might even be very beneficial to you, but if it doesn't fit into your lifestyle, it is OK to not do it.

It might be out of your budget. It might be physically challenging to do it. It might be too time consuming. It has to work within your lifestyle to become something you can do on a regular basis, there is no reason to feel guilty if it doesn't work for you, for whatever reason.

Over the years I have played around with what I use/do regularly, I look at my ROI (return on investment), do I get enough out of the Self Care treatment, compared to what I put into it?

I find cost is an easy one to let go of, we know if something is out of our budget and we can let it go, or we can try hard to get insurance to possibly cover it, but it becomes a pretty cut and dry decision. 

Time on the other hand is harder to me, how do I justify not doing something that might help me? We tend to feel guilty if we are not doing absolutely any and everything to combat Lipedema, and I'm here to say you have to be able to let that go. Emotionally we don't have time for the guilt, we are doing the best we can.

One thing we can do is MODIFY the Self Care item... 

Just like in fitness we know MODs are our friends, they let us do things physically we might not be able to do otherwise, and MODs can work equally well with regards to our Self Care items, too. We just need to learn how to apply them.

For example, I was prescribed 30-40 grade graduated compression (that is the strength of the compression), and it was for a full foot legging style. I was fitted and my PT ordered me custom compression (because I did not fit into off the shelf full leg compression). It was really expensive, like almost $1000; and guess what? I hated it. Not just because it was uncomfortable, but because it felt like it was constantly pulling me down, and it messed with my emotions. 

We tried everything, even asked the company to modify the garment and turn them into a short and thigh highs. The company made the customizations, free of charge, it is part of what you pay for. But the new garments didn't work either, they just rolled, and slid, and didn't stay put. 

It was a long effort to try to make them work, lots of blood, sweat and tears went in to trying to make them work, but they just didn't. So I decided since my most severe swelling was in my lower legs, I would start with knee highs, and I have worn knee highs ever since. Wearing them have helped me to keep my progression at bay, if I would have kept the full leg style I can tell you I would not have worn them, and my progression would have begun immediately.

At first, I beat myself up over that decision, but over the years I have learned to let go of things that I cannot get to work in my lifestyle. I am doing what I can do, and that is enough. I don't do myself any good feeling guilty that I am not able to do more.

When I began training I was concerned that my upper legs would be painful, so I found (from trial and error) that I could easily wear a micro massaging full legging (under my knee highs), and give my upper legs some support, too. I could even squat in these leggings, where I could barely walk in the custom piece I tried initially. Finding that helped me to realize lighter compression and being able to squat did way more for me than wearing higher level compression and not moving much.

I modified my compression. I made it work for my lifestyle. I learned modifying what I was doing was more important than being miserable in the prescribed compression. And isn't that what MODs are all about, finding ways to make it work?

I consider that a MOD to the treatment itself.

Another example of modifying a treatment would be using a hand-held percussion massager. I started using them to try to break up fibrotic tissue, but some of them can be too powerful, too painful on Lipedema tissue, so I experimented with different massagers, and also how I use them. 

You can adjust the power, and change the attachment, but I also found if I adjust the angle I'm hitting the tissue at, I can tolerate the treatment better; again I Modified the treatment itself. Now I am able to add this into my regular Self Care routine, because I found a massager and a method at using it that is not too painful, and I am able to see some real results in how my legs feel.

Another way we can make a Self Care treatment work for us is to Modify the time it takes; maybe something takes too long to fit into your busy schedule, well, why not shorten the duration to something you can easily manage? 

Don't beat yourself up that you can only spend five minutes (instead of 30) on a treatment. If it works and helps, and you can easily add it to your day, you will use it regularly and see results, vs. not doing it at all because it takes too long, and you are already maxed out and stretched too thin.

An example of that would be Dry Brushing, you can really take your time and spend 15-20 minutes brushing your entire body, then hoping in the shower (which is how they suggest we do the treatment), or you can adjust that; maybe you only have 5 minutes to spare, then do 5 minutes. Maybe rotate the areas you focus on, switching up each time. However it works for you is the best way to do it.

Another time saver I just confirmed is another Modification option, which is HUGE in my book; it involves my pump; I am currently working with Medical Solutions Supplier and trying out the Optimal Plus; like other pumps the set treatment takes 60 minutes. 

Before trying this machine, I had another pump that also had a 60 minute set time, but it only did one leg at a time, so 60 minutes for the left leg, and 60 minutes for the right leg (plus the time to get in and out of the pump). It was so overwhelming, and so time consuming, that I rarely found time to use it. It was a great treatment, one that comes highly recommended, but it just was too much for me to use on a regular basis.

The Optimal Plus I am using does both legs at once (already cutting the time requirement in half); but still I don't have an hour every day (the suggested treatment is 2-3 treatments a day for those that are less mobile, and at least once per day for those who are more mobile).

During a session last week it struck me, I wondered if I could adjust the duration, like I can adjust the compression strength? I reached out to my contact and asked, and guess what, you can! 

They still suggest the full hour per day, but said it could be done 30 minutes in the morning and 30 minutes at night. Which might make the treatment something I could do more frequently, or even add an extra half session, where time permits.

So to sum up this rather long post, you can modify your self care treatments to make them work for you and your lifestyle. You should not feel guilty about doing so, either. You should feel empowered, you are learning so much about your condition, and your body, further proving you are your own best resource, so trust you!




Wednesday, December 9, 2020

Happy Jump Day!

I’m all for setting goals, fresh starts, and planning (Coach always says, “plan your work, and work your plan”).


But if you find yourself not starting, not knowing when, why, or how to start, then why not just start today?


It doesn’t have to be this big thing you do. Start small, move in a manner that feels good, and do that today. 


It’s the moving that matters ♥️

Tuesday, December 1, 2020

Lipedema Fitness: Percussion Massager Reviews

I've been talking about using a hand-held percussion massager to help break up fibrotic tissue for a while now. I started in March of this year when I purchased the Wahl Deep Tissue Percussion Massager and I mostly use the 4-finger attachment, to replicate fingers from a Massage Therapist.

The PROS of Wahl Massager:

  • Inexpensive ($27.99 on Amazon)
  • Long Handle = Long reach capabilities (bottoms of feet, and can work on my back easily)
  • 4-Finger Attachment helps with Self Myofascial Release (SMR)
  • Long 9Ft. Cord - no running out of power
  • Light weight, only 1.6lbs.
  • One dial to adjust the power (2000-4000 pulses per minute)
I use mine about 5 minutes per lower leg/foot each morning before applying my lotion and compression socks.

I immediately started to notice my lower legs not being so hard. Typically with Lipedema the lower leg can feel tight, and hard (more like one solid piece of rubber); the massager began to change the pliability of my lower leg. My leg went from feeling like rubber to being able to feel my actual calf muscle (which is huge for someone with late stage Lipolymphedema); I really noticed the difference after the Lipedema Triathlon in June, usually I cannot distinguish the discomfort in the days to follow, but this year I could feel the calf muscle, I could stretch it out and feel it release and heal from all I asked of it during the triathlon. It was pretty amazing really. 

There were other things I added to my self care routine this summer.
In June I started using the Lympha Press Optimal Plus Compression Pump,
and I believe this helped with the positive leg changes I have been experiencing. 

In October Amazon had the Opove M3 Pro Percussion Massage Gun on sale, and lots of members in my group have been using these Gun style massagers for breaking up fibrotic tissue, and having a lot of success, so I wanted to compare to see how it would work vs. the Wahl. 

Some examples of higher end Gun style massagers include: TheraGun, HyperVolt, TimTam - and I am a huge Kelly Starrett fan, so almost went with this one.

Disclaimer: this post contains affiliate links, and I may earn a small commission when you click on the links (at not additional cost to you). As an Amazon Affiliate I earn from qualifying purchases.

The PROS of the Opove massager:
  • POWERFUL - goes from 1800 - 3200 RPM (30 pounds of force)
  • Changes power with the press of a button, and the button is in a place I don't accidentally turn it hugher.
  • Carrying Case for it, and all the attachments, which is great for travel.
  • Cordless, as it has a rechargeable battery
Let's start by saying my husband LOVES this massager, it is powerful and he has been able to workout some knots that he has had for years. He uses this every day, and I'll repeat it, he absolutely loves it.

There really are no CONS for either of these massagers, I think it just depends on your personal needs. The Wahl does have a plastic connector piece where the attachments screw in and out, and other reviewers had that plastic area break. I do hear a very tiny piece of what I assume is plastic rattling around at times. I’m mindful not to put too much of an angle on the attachment but so far I have not had any  issues. I did opt for the extra warranty from Amazon just in case, and it was only a few dollars.

For me the Opove is really powerful, actually a little too painful on some of my Lipedema tissue, but I have experimented with using the massager at an angle, and that seems to help ease the pain. Lipedema is know as the painful fat disorder, and someone without Lipedema should not experience the level of pain that I do when using it.

Other things to consider - it is 2.5lb. and while the extra pound doesn't seem like a lot, after a while it does make my hand sore. But I do not have good grip strength, so again, that could be something with me only. The other thing that comes to mind is the shorter handle limits my ability to use on my back, but does an awesome job on my tight trap muscles after a hard workout.

I have been using the Opove a lot less, since it now resides on my husband's nightstand, but hope to try it some more and see if I can continue to break up the fibrotic tissue and improve the pliability of my legs. This will in turn help me gain more range of motion and improve my mobility.

I still use the Wahl massager every morning as part of my self care routine. I even took it on vacation to the beach. Great to use after a long car ride!

I’m beginning to now feel similar pliability in my thighs, which is pretty amazing in my book.

My morning routine: gentle ankle pumps, rotations, etc, followed by some stretching and yoga poses, ten minutes sitting on my WBV machine, then ten minutes standing on it (with more stretching and self MLD to keep the lymph moving); followed by an hour in the Optimal plus pump, and then I use the massager and then lotion my legs before putting on my Juzo graduated compression knee highs to start begin day.

What are your favorite self care tips?

Here is a link to an earlier blog post on using an orbital buffer as a massager, did you know athletes have been doing that for years?





Tuesday, November 17, 2020

Gua Sha for Lipedema

Using gua Sha to break up fibrotic tissue in Lipedema patients
Recently we have heard Lipedema is possibly a connective tissue disorder, and focusing on breaking down our fibrotic tissue can help reduce our pain.

There are deep tissue techniques that your PT or CLT can help you with, such as ISATM (instrument assisted soft tissue massage). 

You can even learn how to do these at home on yourself, and one of these is called gua sha.

The gua sha tool comes in all different materials, and some popular, lower cost, options include those made from jade and rose quartz.

As someone who likes the meaning behind stones, I like to use them in my energy work, and rose quartz is soothing and helps promote self love.

Have you tried gua sha or other ways of breaking down your fibrotic tissue, and has it helped?

Deep tissue can be very intense and painful, please seek advice from your physical and/or certified Lymphedema therapists to make sure it is not counterintuitive for your condition.

Sunday, November 8, 2020

Dry Brushing for Lipedema

Sunday is usually my rest and recovery day. 

That might mean taking a nap, but always includes various self care treatments.


Caring for Lipedema can be quite expensive, both in cost and time. 


So when we find things that are low cost, and have a low time commitment, we might question if they really work.


Dry brushing is one of those things. 


Typically a brush is under $15, and only takes about 5-10 minutes to brush your body.


Just like MLD (manual lymphatic drainage), it really moves our lymphatic system, which in turn boosts our immune system.


A win, win, as we head into the winter months, during a global pandemic.


What is your rest day, and what At Home self care do you gravitate towards?

Saturday, October 31, 2020

Getting Up/Down Safely with Lipedema

The following is a compilation of posts and videos I have shared with my Lipedema Fitness Facebook support group; each showing various methods of how I get down to, and back up off, the ground. 

Safely getting off the ground is a big deal in later stage Lipolymphedema patients, our balance becomes more and more challenging as we advance, and carry more fluid in out bodies.

Some cannot manage getting up, 

A big part of my workouts include getting down (and back up) from the floor. Which was my initial goal when starting to train after my Lipedema diagnosis and after listening to wrong advice being given to us about exercise being bad for our symptoms early on in my diagnosis.

When I began training again I had lost nearly all my mobility and could barely stand. I am grateful to the strength training and improved core strength that allowed me to achieve this goal, and I try to do some ground work as often as possible, to keep being able to do so.





Tried a new getup from the ground, using no knees (after watching the Dr. Jo video I posted earlier today, my brain was like “I wonder if I could do that?”)... and my body said YES WE CAN!

This is seven years in the making, lots of core work, and lots of pushup progressions - from doing standing pushups against my kitchen sink, to gradually going lower in what I used to modify (table, bench, stacked mats to finally being able to do them on the floor, which also started me on my getoff the floor work). 

Then I started being able to hold a plank, and worked up to how long I could hold it, which involved lots of walking out with my hands from a piked position, then walking my hands back in.

This is not a move I’m suggesting people do, you can really hurt yourself, it is a post to show progression, and how important the body weight moves we do are, especially for functional fitness. 

Being able to move our bodies through space is such a gift, one we need to continually work on and try to improve, especially as we age, and/or advance in our Lipedema. I use my upper body strength so much in moving my body throughout the day.




Last video of getting up off the ground from a seated position. I typically turn over and use my knees, but have been working on other alternatives. Learned I could do this after Turkish getups last year. Love learning new things.








Tuesday, October 20, 2020

Lipedema Fitness Product Review: Cubii Pro (under desk elliptical)

Move your Lymphatics and stay mobile with the Cubii Pro under desk elliptical - check out this review from Lipedema Fitness, and see if this can help you with helping you get and stay more active.
Recently a member of the Lipedema Fitness support group shared that Good Morning America had a Cubii Pro ergonomic elliptical on their #dealsandsteals segment for $218.

Since ankle pumping is a great way to move our lymphatics it peaked my interest. Not to mention working from home can create challenges for staying active.

I purchased it, because I am the Queen of trying things for my group. To see if something our Lipedema bodies can do, and if I find it helpful for caring for our condition.

This was a great deal, as the Cubii Pro lists for around $350. The Cubii Jr. runs around $250. Pro comes with Bluetooth connectivity that wirelessly connects to a mobile app to help you keep track of your progress. Please note that this post contains affiliate links and I may earn a small commission if you click on the link and purchase the item (at no additional cost to you). It does in no way alter the review I provide for any item.

The Cubii came well packaged, included a screwdriver and 4 small screws to put it together (which took under five minutes). It has a handle and weighs about 25 pounds. The deal I purchased came with (2) Therabands, which you can feed through the handle on the Cubii to add in arm movements (again, great for moving our lymphatics and reducing swelling).

It fits under my dining room table, and my knees do not hit the table when using it, although the center support beam on my dining room table does prevent the Cubii from sliding back as far as I would like - an easy fix is to move my chair back, but ideally I would not have to adjust my chair, so I could use effortlessly throughout the workday.

It definitely pumps your ankles, which is great for moving our lymphatics, which reduces the swelling in our legs. It also targets your core (use good posture), calves, quads, glutes and hammies.

Try pedaling forwards and backwards for targeting different muscles, as well as varying your foot positions (having your foot further forward vs. further back on the foot pedal - each will engage difference muscles and parts of the foot). I was surprised at how quickly my muscles felt the movements, especially my quads, I could tell my body was not used to moving in this direction, similar to a seated knee lift, and it was nice to feel those muscles getting a good workout.

There is a resistance dial on the front (goes up to an 8), the higher the number the more resistance, and it is pretty challenging on 8, I am using at a 5 most of the time, and bump up the resistance if I want a more challenging experience.

I began using Cubii while checking emails, then when watching TV (after work) I would use during commercials. Fitting in small increments keeps you active.

PLUS: it really helps move those hip flexors! Key when you have a desk job.

I have not charged it once, I just use it manually. Mainly because the cord does not reach the Cubii while it is under my table, so I would have to move it out and charge it, then move it back in. Not a too heavy thing (again about 25 pounds), but more a convenience thing, and I don't have a need to track my friends on the bluetooth, but I would like to know stride, mileage, time, etc. So eventually I'll plug it in and give it a go.

The bonus on the weight of the machine, is it doesn't seem to move while you are using it, the weight keeps it stationary, which is a good thing. It is built solid.

There were (2) other pieces in the box, 2 wheel stabilizers, if you use while seated at a chair that has wheels, the front two wheels would sit in the stabilizers and thus not roll when you pedal. Smart!

Summary: I think this is a good option (if in your budget) for those with limited mobility, like many with later stage Lipedema, or if you are just starting to get active, or recovering from an injury (knee, hip, ankle). It is very easy on your joints, especially those knees. But if you are looking to replace gym (cardio) type workouts (treadmill, bike or standing elliptical), this will probably not give you what you need. This is a seated option only, they include warnings to not stand on it.

I am dealing with some plantar fasciitis (heel pain), and using the Cubii does not seem to cause any additional pain, like standing seems to do.