Read Part 3 here

Continuing lymphedema treatment

At the conclusion of July’s post, Carol was waiting for her hose.  They arrived & she loved them! One problem: The manufacturer didn’t sew the ankle pocket around the full ankle as requested. Turns out, this manufacturer couldn’t sew a pocket all the way around the ankle. Why didn’t they mention that before? Without the pocket, the hose would slip down & bunch, causing pain.

Long story short, I complained, sending copies of communications with the manufacturer’s customs department describing the need for a full pocket and why. Their response was fantastic. They gave us a refund due to the situation.  Carol and I tried two more manufacturers and finally got what she needed. We’re still working on adjustments, but she’s very happy with the containment and feel of the compression garments.

The hose were one of several impediments Carol has faced. I mentioned some of them in July. Let’s look at a few more.

Complication – diarrhea

Carol went back to a Keto diet she had used to lose weight in the past (the obesity weight, not the lipedema weight). The diet calls for ingesting a particular oil and liquids the first week which gave her diarrhea. Sometimes that diarrhea ended up on leg bandages. So, she would remove the bandages to shower and her legs would refill. Eventually, she progressed in her diet and recovered from that complication.

Complication – emotional upheaval

Losing someone close to her earlier this year, she has struggled with the void their passing created. In addition, she had a major life change – her job.  Covid caused a lot of people to feel isolated as they worked from home. Carol felt isolated, too. After months of structural change (which included moving people she had worked with for years to other departments), she decided to retire. Now she was not only home and alone much of the time, she also wasn’t interacting with the people she enjoyed talking to. Carol is an extrovert, so this was a hard adjustment. She’s currently pursuing virtual counseling options.

Complication – transient ischemic attack (TIA)

As if the prior complications weren’t enough, she spent a weekend in the hospital after experiencing symptoms of a stroke, including spiked blood pressure and difficulty talking (in this case, the speech difficulty was expressive aphasia). She had just been to see her doctor a few weeks before. She was told her cholesterol was elevated and she was given a new medication to help. Then she awoke one Saturday morning unable to talk.

She was taken to the ER by ambulance. After a day of monitoring, they released her with inconclusive results that pointed to a TIA. A TIA is often referred to as a “mini-stroke.” Symptoms are less severe than a stroke and don’t usually last long because the blockage in the brain is temporary.  In the days that followed, Carol had occasional difficulty pronouncing words and remembering lyrics to some of her favorite songs, but words were coming back to her. Over the next several days, as we worked on her aphasia and as she practiced on her own, speech improved. But not for long.

More recently, she has been complaining of numbness in her face that comes and goes.  I noticed her speech seemed to be getting worse in our last session (even when she slowed down). Her doctor wanted her to hold therapy until she consults a neurologist. That is where we are now. Waiting for her hose revisions and waiting to find out what’s causing her aphasia and numbness.

Conclusion of the lipedema blog series

Carol has had several battles during her lymphedema treatment. But her persistence paid off & she’s made some awesome functional gains as she’s gotten her legs under control. She can get up and down from her chair, in and out of bed, and in and out of her car.  She drove a couple times (which she hasn’t done in a year).  She has more work to do (much of which is on hold pending her neurology follow up), but she’s still motivated — & she’s happy with her lower leg status. I hope to give you a positive update on her condition in the future.

For more information about lipedema, visit the following links: Dr. Karen Herbst, Lipedema Foundation, The Lipedema Project, the Fat Disorders Resource Society, National Center for Advancing Translational Sciences and this article in the Plastics and Reconstructive Surgery Journal.

Read Part 2 here

Getting Treatment

Carol started treatment to reduce her leg size. We began with manual lymph drainage (MLD), multi-layer compression bandaging (using a liner, toe gauze, foam, and short-stretch bandages) three days a week. We added exercise and skin care. (This four-part treatment is called Complete Decongestive Therapy or CDT).

She lost volume quickly – very quickly. In fact, her compression would slip down prior to the next visit allowing refilling. (This was later resolved using an adhesive lotion and an elastic Tubular sleeve.) But progress wasn’t without its complications.

Complication – mobility

Although I recommended Carol start with one leg (bandaging to her groin), she wanted to start with both legs. To avoid returning too much fluid to her heart and kidneys too fast, we bandaged both legs to the knee only the first week of treatment. Bandaging both legs made getting up from her chair more difficult because it limited ankle flexion. Carol later decided she wanted to bandage one leg only. As a result of straining to get up from her chair, she developed biceps tendonitis, causing shoulder pain.

Complication – skin integrity

Carol also found getting to the bathroom promptly was a challenge (causing her to soil herself and the thigh-high bandages).  Because she hadn’t performed her normal hygiene routine, she developed a yeast infection and skin breakdown under her abdominal fold.

Complication: refilling and weight gain

Unhappy with her hygiene status, Carol began removing her compression to shower before I arrived, allowing her leg to refill. Despite encouragement to continue thigh-high bandaging with hygiene modification (such as using a cast protector to shower), she decided she wanted to regress bandaging to the knee only. As a result, her thigh refilled and she regained some of the weight she had lost. Because of the atypical leg shape, bandaging was tricky & a few times she had heel pain due to pressure. This problem was resolved by fabricating a doughnut foam shape and placing it under her compression, offloading the pressure to her heel.

Complication – shoulder pain

Carol’s shoulder pain persisted. We raised the height of her chair by adding pillows, but she couldn’t get comfortable due to hip arthritis pain. I encouraged her to modify her chair height by letting me install 2x4s. She declined feeling this was regression instead of progress. (She felt she just needed to be stronger.) Several sessions later, as her shoulder pain got worse and as she became frustrated having to ask her spouse for help getting up, she agreed to modify her chair. She later described this modification as “life changing.” When she became compliant applying ice to her shoulder to reduce inflammation, and as she continued to use the 2x4s installed for chair height elevation, her shoulder pain went away.

We added exercise to her bandaging, and she slowly began to see more functional progress. She is now able to get into her bed & into her car on the driver’s side without assistance. While therapy has encountered other complications, at this point, we are waiting for her knee high compression hose (and I’m hoping she will later get custom, flat-knit biker shorts (capri length) with a zipper for full leg & abdominal compression). Stay tuned!

For more information about lipedema, visit the following links: Dr. Karen Herbst, Lipedema Foundation, The Lipedema Project, the Fat Disorders Resource Society, National Center for Advancing Translational Sciences and this article in the Plastics and Reconstructive Surgery Journal.

Blog series to be concluded August, 2021.

Read Part 1 here

The Unthinkable Happened

Then the unthinkable happened.  One day a coworker stopped Carol to say she had something running down the back of her leg & on her pants. In fact, it was on both legs. She had developed wounds and didn’t know it. She went to a wound care clinic who told her something she had never heard:  You have lymphedema. She went to a lymphedema therapist who provided massage and compression bandaging. At the end of treatment, Carol was fit with custom, flat-knit compression hose. However, because of the unusual leg shape common to Lipedema (a condition she wasn’t yet aware of), the hose bunched around her ankle & caused pain. So, the foot of the hose was removed under the manufacturer’s warranty, and she wore compression from her ankle to her knee. At the time, her shoes seemed to provide enough compression for her feet. Her wounds had healed, and she loved her compression.

Ankle cuff causing hose to bunch

She wore her hose until they began to fall apart. Carol needed new compression but her former therapist wasn’t available. Not having any help, she searched the web and found hose she thought would work. But she didn’t know anything about compression sizing, strength, what gradient pressure was – in short, she didn’t have guidance and the compression she bought didn’t work. Her legs got bigger, and she was worried she would end up with wounds again. She began looking online for help and came across me.

Symptoms of lipedema

When I met Carol, I immediately recognized her leg shape as suspect for lipolymphedema (lipedema and lymphedema). Her legs were grossly symmetrical (meaning both legs looked about the same) and her feet were swollen but smaller. She had a definitive cuff around her ankle and while she was likely obese, there was more to her appearance than that. I asked Carol if she had ever been diagnosed with lipedema. She had never heard of the condition. I asked a few questions about her family and medical history.

She was very healthy and had no heart or kidney issues. At some point, though, a doctor had put her on diuretics. The diuretics helped for at time & then seemed to stop working. While she didn’t feel she ever bruised easily, during her evaluation, I noticed a bruise on the back of her leg that she wasn’t aware of (and she denied using a blood thinner).  In fact, she didn’t take any medications other than one for her thyroid.  She also denied feeling hypersensitive but had never really paid attention (her legs were hypersensitive to mild touch during our assessment).  She had knee & hip pain (a common characteristic in lipedema due to stress put on the joints). The arthritis had become so bad, she had to start using a walker. She cried as she told me about the first day she went to work with the device. In Carol’s mind, a walker was something “old people” use. As we talked about her family history, something stood out. At first, she said her mom had always been tiny, but later she mentioned her being diagnosed with elephantiasis (stage III of lymphedema) after the birth of Carol’s sibling. (It’s highly unlikely her mom went from tiny to elephantiasis after childbirth. She likely had swelling for years but, as a child, Carol just hadn’t noticed.) Carol was always hyper-flexible (a trait some people with lipedema have), and she struggled with her weight since adolescence (a time of hormonal change).

Sisters

Carol’s sister happened to be visiting during the evaluation. She told me all of their siblings had leg swelling and used compression now, but no one had as much swelling as Carol. Not only was she physically declining, but she was worried about her sister’s emotional & psychological health. Carol was a people-person but since Covid, she had been confined to her home. She became depressed. Carol spoke up, “but I’m ready for change. I woke up one day with an epiphany that I needed to make a change. That’s when I started looking for help and found you.”

Learning about lipedema

After the evaluation, I sent Carol a link to a doctor who specializes in lipedema named Karen Herbst.  I also sent a link to the Lipedema Project film entitled, The Disease They Call Fat and asked her to see if it resonated. When I saw her the next session, she said she could absolutely relate. She had never heard of lipedema before. How come no one ever told her? I explained lymphedema isn’t well-know but medical professionals are becoming more aware of the term. Lipedema, however, is even less well-known. And it’s one of the causes of secondary lymphedema.

For more information about lipedema, visit the following links: Dr. Karen Herbst, Lipedema Foundation, The Lipedema Project, the Fat Disorders Resource Society, National Center for Advancing Translational Sciences and this article in the Plastics and Reconstructive Surgery Journal.

To be continued 7/03/21.

“You’re just fat.” “You need to eat less.” You need to exercise.” “You need to diet.”  “You’re lazy.” Words hurt, especially when you are already doing everything you know to do to lose weight. If you are someone who can lose weight but never as much as you want, this blog is for you. If you hit a “wall” with diets and exercise you cannot get past, this blog is for you.

Lipedema, Obesity and Swelling

I’ve written a few posts about a condition called lipedema (you can find them here, here and here). I’ve treated patients with lipedema which can progress to a condition called lipolymphedema (lipedema and lymphedema). This blog is part one of a woman’s story who has lipolymphedema and obesity. Meet Carol.

^{Carol struggled with weight loss}

Carol* struggled with her weight, particularly when she hit her teen years. She has two brothers and a sister who use compression hose as adults, but they never struggled with weight like she did. In her late teens, a doctor put her on diet pills. She also put herself on several diets to lose weight over the years, including a 500-calorie diet (an extreme and risky way to lose weight).¹ Her efforts would partially pay off.  She would lose some weight in the upper body but never much in the lower body. Commonly losing 35 pounds, weight loss would then plateau, and she could not lose any more.  Disappointed and frustrated, she felt bad about herself.  She would gain back the weight she lost and then some. Her sister commented she always looked good in her upper body. Her lower body was never proportioned to the rest of her body. As an adult, Carol even had a lap band procedure but with no subsequent weight loss.

From weight to swelling

Most of her career, Carol had a desk job & company policy required her to wear pantyhose. Around age 33, she fell & injured her left knee which resulted in arthroscopic surgery. Later, her work policy changed, and she no longer had to wear support hose.  She gladly got rid of them!  At some point, she began noticing swelling around her ankles, particularly her left ankle.  She also began having swelling in her legs.  Because of the swelling and joint pain (her knees & hip hurt), she went to a doctor for help. This doctor said she needed to lose weight. She told him she had tried dieting and exercise. She was disciplined & strict in what she ate, but she wasn’t able to lose the weight. He didn’t believe her.

Doctor after doctor

She went to another orthopedist. She described this man sitting in his chair, twirling his glasses and saying, “I can’t do anything for you. You’re just too fat.” She went to three more doctors after that consult who told her the same thing: You’re fat. You need to lose weight.  She went to one more orthopedist and described how she felt she had been discounted and [she paused as she held back tears telling me the story] treated like somebody who was just not worth their time. Someone who [she began to cry] had no value.” She described feeling like she was looked at as a second-class citizen, like someone who didn’t try.  That doctor said he didn’t want to treat her that way, but there wasn’t anything he could do for her. At that point, she stopped going to doctors.  She felt hopeless.  “If the person you place your [trust and] well-being in can’t help you, then why am I going? Why am I spending my money?” Her sister who was present in our session interrupted, “She wasn’t just hopeless, she gave up hope because she didn’t go to another doctor for years after that — for years.”

For more information about lipedema and resources, visit the following links: Dr. Karen Herbst, Lipedema Foundation, The Lipedema Project and the Fat Disorders Resource Society.

To be continued 6/01/21.

¹ https://www.healthline.com/health/food-nutrition/500-calorie-diet

Definition¹ & Origin
The word “lipedema” comes from the Greek word “lip/o” (meaning fat) & “edema” (meaning swelling). Lipedema is an abnormal proliferation of fat cells & swelling. It may also be called lipoedema. A chronic & progressive condition, this disorder is typically associated with hormonal changes or genetic predisposition & often co-exists with venous disorders & other vascular diseases.

Characteristics
It is found primarily in women & manifests as a symmetrical shape with an increase in fat tissue (similar to the shape of riding breeches) beginning near the waist (the iliac crest region) & extending to the ankles. There are two types: column-shaped & lobular.

Symptoms typically include swelling in the evening or in standing (i.e. orthostatic edema), increased sensitivity to pain, easy bruising, difficulty walking (due to the increased fat tissue), reduced elasticity & increased expandability of the skin & pituitary-thyroid or pituitary-ovarian hormone disturbances.

Pathology²
The proliferation of fat tissue compresses lymph collectors of the superficial lymph system. In lymphangiographic images (i.e. X-ray images), lymph collectors within the fat tissue have a coiled appearance (as opposed to being fairly straight in their path toward the lymph nodes where fluid continues to drain as in normal tissue). This coiled appearance reduces the flow of lymph fluid which causes fluid to “back up” in the affected area. In imaging, malformations are seen in the precursory vessels (lymph capillaries may have bulging areas & initial lymph channels are widened). Lipedema usually has loose connective tissue, so because there is not a lot of skin support, the pressure in the tissues is low which allows fluid to accumulate.³

According to Foldi, the initial cause of lipedema progression is microangiopathy within the area of fat tissue (i.e. a disease of the smallest blood vessels, the capillaries). As a result, blood capillary walls become thick & weak. Consequently, the capillaries become more permeable. They bleed, leak protein & slow the flow of blood. More fluid & proteins enter the tissue space (resulting in edema – as a result of increased hydrostatic pressure – &, ultimately, a greater demand on the lymphatic system). This leads to hypersensitivity of the tissue (people are usually very sensitive to touch). The blood capillaries are also more fragile which leads to bruising with mild trauma.

As lipedema progresses, the constant overload causes lymphatic vessels to develop additional structural changes. Mast cells in the tissue activate fibroblasts which results in interstitial fibrosis & development of lymphedema progression.

Diagnosis
As stated in the 2014 blog, lipedema is often misdiagnosed as obesity. Sometimes it is diagnosed as lymphedema as well. Imaging can be used (indirect lymphography would likely show prelymphatic channels to be large pools among other changes) but it is not necessary.⁷

Psych-social Effects
Lipedema is underdiagnosed⁴ & usually misdiagnosed as obesity. Patients are generally told they are fat & need to lose weight. Unfortunately, because lipedema cannot be “dieted away,” efforts to lose weight are unsuccessful. Some people may develop obesity as well due to frustration of unsuccessful dieting attempts & eventually develop a more sedentary lifestyle.³   It is interesting to note, some studies suggest not only does obesity contribute to the development of lymphedema but lymphedema can contribute to the development of fat tissue. ^{5, 6}

Note: Dyslipidemia is not the same thing as lipedema. Dyslipidemia is an abnormal amount of lipids (like cholesterol &/or fat) in the blood & is frequently a result of diet & lifestyle.

References
1 Medical Terminology
2 Foldi, M, Foldi, E. (2006). Foldi’s Textbook of Lymphology (2nd ed.), p. 374-376. Germany: Urban & Fisher.
3 Lymphedema Management Comprehesive Guide (location 8661)
4 www.lipomacdoc.org/lipedema.html
5 Zampell JC, Aschen S, Weitman ES, et al. Regulation of adipogensis by lymphatic fluid stasis: Part I. Adipogeneis, fibrosis, and inflammation. Plast Reconstr Surg. 2012;129:825-834. (Vodder Review article)
6 Aschen S, Zampell JC, Elhadad S, Weitman E, De Brot M, Mehrara BJ. Regulation of adipogenesis by lymphaic fluid stasis: Part II. Expression of adipose differentiation genes. Plast Reconstr Surg. 2012; 129:838-847.
7 Foldi, M, Foldi, E. (2006). Foldi’s Textbook of Lymphology (2nd ed.), p. 423. Germany: Urban & Fisher.

Lipedema is a condition often misdiagnosed as obesity. While obesity may accompany this disease as it progresses, they are different conditions. Lipedema is “a chronically progressive, [bilateral] symmetrical accumulation of fat in the subcutaneous tissue with orthostatic edema occurring almost exclusively in women.” It is unclear if the fat cells multiply at an abnormal rate, are abnormally large or if the fat accumulation is a combination of these.  Additionally, capillary permeability is increased causing fluid & protein to accumulate in the interstitium which, in turn, causes edema.  The added swelling & protein causes hypersensitivity to pressure & touch, & the increased capillary fragility causes bruising with mild trauma.  Besides edema, hypersensitivity & bruising, people with this condition may struggle with depression, embarrassment or shame. This may especially be the case when they have been told they are just “fat” & need to lose weight.  However, this condition cannot be “starved” away.  The cause of lipedema is thought to be attributed to a hormonal disturbance or, more commonly, a genetic predisposition (several women in a family often have lipedema).

Frequently, lipedema starts at the hips & ends at the ankles though it can begin in the lower legs & progress upwards. While the upper body can be involved, it is usually the legs. In cases involving the legs, the feet are not involved & (if the upper body isn’t involved) the upper body is disproportionately smaller. Men can have lipedema (when there is a hormonal disturbance such as testosterone deficiency)² but it is more common in women & typically presents around the time a woman experiences a hormone change (puberty, menopause or pregnancy). There are two forms: Column-shaped (a truncated appearance) & lobar.

Diagnosis of lipedema is done through medical history & clinical examination, differentiating it from other conditions such as lymphedema or lipo-lymphedema (lipedema with lymphedema). Additionally, an indirect lymphography may be done during which a contrast dye is injected into the skin & moves along the fat cells “from the dermis into the edematously dilated system of prelymphatic channels located between the adipocytes.”³

Treatment includes: Prevention of lipo-lipedema⁶ (obesity & lipedema) by engaging a regiment of calorie-conscious, low-fat, low-carb diet & exercise; liposuction (which must be cautiously considered & only performed by a specialist knowledgeable about lymphedema & the lymphatic system); Complete Decongestive Therapy (CDT). Combination of the latter two treatments has proven to be very effective. However, these treatments do not change the increased capillary permeability which promotes the edema, so long-term treatment [CDT & compression garments] is needed.⁵  If the lipedema is in its early stages (edema reduces with limb elevation), compression garments alone can prevent the edema.

In CDT, the decongestion phase (Phase I) should be done without bandages the first few days because of the hypersensitivity of the tissue. After this time, bandages can be slowly & cautiously applied. MLD should be performed daily.  At the conclusion of treatment, a person must wear long-term compression garments. Compression will compress the fat cells, causing the edema to move out of the adipose tissue & into the connective tissue, giving initial lymph vessels access to drain the fluid.³  In the maintenance phase (Phase II), MLD should be continued 1-2x/week.  It is important to note that gastric bypass & gastric lap band procedures are not appropriate. Diuretics (as treatment for lipedema) are also not indicated.⁴

References

¹Foldi, M, Foldi, E. (2006). Foldi’s Textbook of Lymphology (2^nd ed.), p. 418. Germany: Urban & Fisher. Foldi, M, Foldi, E. (2006).

²Weissleder, H. Schuchhardt, C. (2008). Lymphedema Diagnosis and Therapy (4th ed.), p.295. Germany: VVA GmbH/Wesel Kommunikation.

³Foldi, M, Foldi, E. (2006). Foldi’s Textbook of Lymphology (2^nd ed.), p. 423. Germany: Urban & Fisher. Foldi, M, Foldi, E. (2006).

⁴Foldi, M, Foldi, E. (2006). Foldi’s Textbook of Lymphology (2^nd ed.), p. 425. Germany: Urban & Fisher. Foldi, M, Foldi, E. (2006).

⁵Weissleder, H. Schuchhardt, C. (2008). Lymphedema Diagnosis and Therapy (4th ed.), p.312. Germany: VVA GmbH/Wesel Kommunikation.

⁶Foldi, M, Foldi, E. (2006). Foldi’s Textbook of Lymphology (2^nd ed.), p. 425. Germany: Urban & Fisher. Foldi, M, Foldi, E. (2006).