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. 

Lipedema and GLP-1 Month Three

What a difference a month makes... 

Long story short, there is no Month Three on the GLP-1 medication, Wegovy. And my experience has been INFLAMMATION OVERLOAD.

All those wonderful things I experienced with the medication in months one and two, have been reversed back to before taking the medication, and then some. You can read about those experiences here: Month One and Month Two.

So What Happened?

Why Did I Stop Taking Wegovy?

My insurance changed from Blue Cross Blue Shield (BCBS) to Cigna on July 1, 2024, and just like the many struggles I faced getting BCBS to approve the medication initially, Cigna has now also denied this medication. So we are back to step one, getting approved, and then a possible bigger challenge, finding the medication in stock.

Step One: Review Insurance Denial

From what Cigna has said in my explanation of benefits, their actual words:

I was denied Wegovy 1mg because...

1. My records show that I will not take Wegovy along with exercising and eating a better diet.
2. My records do not show that I already tried to lose weight for three months or more.
3. My records do not show that my BMI is >30, or >27 with additional health concerns (ex. high blood pressure, Type Two Diabetes, breathing problems during sleep, etc.)

Each of these denial reasons is absolute BS. I already exercise, and eat healthy, I have tried losing weight for most of my life, and my BMI is well over 30. 

The good news about running the Lipedema Fitness support group for more than a decade, my efforts are well documented, and I have years of visual proof.

Step Two: Talk to My Doctor (again)

I have been in constant communication with my doctor, we have talked a lot about my even considering taking them in the first place, I did not enter into this decision lightly, but currently I am talking to my doctor to find out what was asked of them, and what they provided in their Prior Authorization (PA) to Cigna, so I can understand better where the issue lies. Is Cigna not seeing the details my doctor provided, or did my doctor maybe not provide the details needed? I'm not sure, I'm still waiting to hear back from my doctor. Who I just learned is leaving the practice as of November, another bump in the road that is my health (I'll save that for another day).

Once I know what was asked and how my Doctor's office answered the PA questions, I can either have them resubmit the PA with more details, or I can decide to appeal the decision and include my own documentation.

Medication Shortage Issues

Additionally the 1mg dose was not in stock anywhere in my town. I struggled to find the .25mg in May, and I struggled to find the .5mg dose in June, but ultimately I did find them at a CVS pharmacy a few towns over, and CVS was fantastic to work with, as they would check to see if nearby branches had the dose I needed in stock, if they themselves did not. But nobody seems to have the 1mg. dose, not CVS, not Walmart, not Walgreens, etc., so even if I wanted (could afford) to think about forgoing my insurance, and pay out of pocket, nobody has it in stock, and they cannot tell me when it will be available. And quite honestly, at about $1300 per month, that is not an option for me.

Which has me questioning going through a Compounding Pharmacy. For those that do not know, a Compounding Pharmacy is one that can make customized medications. GLP-1 meds can be made through Compounding Pharmacies, if they are sterile and licensed in the state where you live, due to the shortage of these medications.

Please know that the FDA has advised "Patients and health care professionals should understand that the agency does not review compounded versions of these drugs for safety, effectiveness, or quality." So this is another big decision that I will have to evaluate.

What I Experienced When I Went Off GLP-1

My last injection of the .5mg dose that I was taking in month two was done on Sunday, July 7. 2024. Which means I have been without any medication since then, so about three weeks of no GLP-1.

As I mentioned above, the biggest thing I have experienced is INFLAMMATION OVERLOAD.

Not only did the inflammation return in the areas that experienced a reduction while on the medication, I experienced some other more intense issues from the surge of inflammation in my body due to the abrupt stoppage of the medication.

The first was a Bartholin Gland Cyst. If you have ever had one of these, you know how extremely painful they can be. Since I have had a few of these over the years, I know what the early signs are and thankfully the supplement Serrapeptase works wonders, like immediate relief. Within a couple doses it was gone. This is a supplement I keep on hand as one recommended early on by Dr. Karen Herbst to help with Lipedema. I was unable to take on a regular basis as it caused pain in my knees, and when I stopped it, the knee pain went away, but I do keep it on hand for the cysts.

The second was an eye issue showed up in my right eye. Since peri menopause I developed dry eye syndrome. I wear contacts and went from wearing them daily to being able to wear them about once or twice a week. Did you know it is a common condition for women transitioning through menopause, like 60% common. Did you know that doctors sometimes call Dry Eye Syndrome A Vicious Cycle of Inflammation? I have been doing all the suggested steps to keep my dry eye syndrome under control, like being mindful of air blowing in my eyes, limiting contact wearing, moisture drops, etc. It had been years since I had any issues, and wham last week my right eye began the symptoms. It is incredibly painful and irritating - but ultimately I began using a moist heat mask treatment nightly and that seems to have resolved that issue. If I miss a day or two the pain is right back.

The third has been with skin integrity. Which includes overly dry skin in some areas, and overly moist skin in other areas. Rashes have been challenging in skin fold areas (something that completely stopped while on the medication). Even during the heatwave that was our summer. Now those are back seemingly even more often.

The fourth was some heart beating rapidly since menopause, randomly, no real understanding why, no similarities in what I’m doing when it happens, but on the medicine, none occurred. Could be coincidence, but since I’ve been off they have returned.

So Where Am I Now? (Updated October 11, 2024)

I learned I cannot appeal the insurance denials, my doctor has to, and you can imagine after three attempts my dr is tapping out soon, I had a follow-up apt with her on the 20th of August and she is leaving the practice and said we can try again at the new practice in December. I’m honestly looking into Zepbound straight pay (they introduced a direct through them pricing plan, as they are not thrilled about compounding agencies). Or maybe a compounding version, a trusted Lipedema friend shared where she goes (in my state), and talking to my doctor about it.

Also, there are new obesity ICD-10 codes that don’t include “due to excess calories” which I learned was an issue with the past codes that did say that. The new codes just went into effect Oct. 1st, so more to investigate.

Overall it feels like the process is made to make us walk away from trying to receive medication we should be approved for. We pay more and more for insurance, and it provides less and less.

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.