Living and Dealing with Lipedema

By Christina Routon

Over the years, even before I knew I had lipedema, I've had to make adjustments in how I lived my life. Thinking ahead, the weather, the clothes to wear, would there be a chair I could sit in? Here are a few tips on how I've dealt with my legs.

Tip 1 - Wear knee length or capri length workout shorts / leggings under dresses and skirts to protect skin.

I discovered when I was pregnant that wearing dresses and skirts, even with hose, wasn't going to work with  my legs. The skin on my legs would rub together as I walked and it got so bad, even with hose, I knew I had to find something else to wear. These were the days before Spanx and other types of shapewear, so I found some comfortable workout shorts. I had knee length pair and a capri length that went over my knees, so I could wear them under pretty much anything. Yes, they were hot, especially in the summer and wearing them over hose, but they protected my skin.

Tip 2 - Sideways - sit

I learned this while going to amusement parks and riding the roller coasters. While I technically did fit in the seat, the bar coming down over my legs hurt and pinched, sometimes leaving bruises. What I started doing was getting into the coaster's car, sitting sideways or slinking down just a bit in the seat with my legs straight out in front of me. They would lower the bar and then I would be able to adjust my legs under the bar. It wasn't always comfortable, and I don't know if it compromised safety, but I was able to ride the coaster. Sometimes I still do this at an older movie theater or restaurant booth if the seat is narrow.

Tip 3 - Arrive early to save a seat

No matter where you're going, try to make sure you arrive a few minutes early if possible, especially if you need a seat and don't know what types of seating will be available. If you're going to someone's house, do your best to arrive right on time and scope out a comfortable seat. This could be a large chair, a dining room chair without arms, or a place on the couch. Save the seat with your purse and do whatever you can to keep it as the night goes on. Do your mingling with your friends during the early part of the evening so when you need to rest you'll be able to head right to the seat you've saved.

Tip 4 - Buy the best pair of supportive shoes that you can afford

One of the common physical traits of lipedema are fat pads on the inside portion of our knees. These pads tend to bow our legs in slightly, which affects our gait, and our feet tend to pronate. One way to protect our feet is to buy good, supportive shoes - the best we can afford. By buying good shoes instead of the cheap $10 tennis shoes, we are able to treat our feet better, have less pain and more energy to walk, exercise and go to work. I learned a long time ago the cute shoes would end up doing more harm than good when it comes to my feet. You don't have to buy old-lady shoes or nursing type shoes with a large sole. Just buy the best pair of shoes you possibly can and replace them every six to seven months.

I'm blessed that Lipedema hasn't impacted my mobility to the extent that I need a cane or wheelchair, but these are considerations for other women who deal with this disorder. What are some tips on adjusting your life with lipedema?

I ALMOST FELL OFF MY CHAIR: or, THE MARINE’S HAVE LANDED

By Maggie McCarey

I Googled “lipedema” this week and a few entries down from  #1 Wikipedia was a site for sore eyes.  It was a bonified United States government document on lipedema.  Do you know what this means, Phineaus T.? It means that lipedema has made it to the big top: the National Center for Biotechnology Information at the Department of US National Library of Medicine at the National Institutes of Health.  The document is an article titled Lipedema: a Rare Disease by Bae Wook Shin, M.D., Young-Joo Sim, M.D., Ho Joong Jeong, M.D., and Ghi Chan Kim, M.D, researchers from Korea.  They followed the medical intervention of a 60 year old Korean woman who had shown intermittent symptoms for ten years and then, the last three years before treatment, seemingly unstoppable swelling of the legs, and ultimate diagnosis of lipedema.

        

Dr Shin, et al. made some unprecedented statements about lipedema.  I will try to summarize their findings. [Note that I have quoted much directly from the article Lipedema is a Rare Disease.]

1) Success with complex decongestive therapy, pneumatic compression, and diet modification to reduce swelling in treatment of lipedema is debatable.

            

2) In examining their subject the researchers noted:

                        a. her muscle strength and sensory and muscle stretch reflexes of both the upper and lower extremities were normal

                        b. upon examination, petechiae (purple splotches) were noted in both her lower extremities and a lipoma was observed under the right knee joint. [petechiae is common among viruses carried by insects, disease, and lupus among other causes].

                        c. her greatest response to pain was along the outer thighs [which in sports medicine is called Iliotibial Band Syndrome or inflammation of the IB causing pain on the outside of the knee up the outer thigh and jabbing intermittent pain in the hip.] *I know it well.

            

3)  No abnormalities were noted upon neurological examination.

            

4) Blood tests for diseases of the thyroid gland, heart, and kidney were all normal.            

5) Three-dimensional computed tomography angiography was performed to determine whether the edema was a result of vascular lesions.

                           a. vascular lesions, including deep vein thrombosis, were not observed.                         

                           b. Technetium-99m human serum albumin lymphangiography was  conducted to assess the presence of lymphedema, but there were no abnormalities . [No lymphedema present!]

             

6) Regarding her pain, no abnormalities in the onset latencies and nerve conduction were found and there were no denervation potentials on needle electromyography. 

                            a.  doctors  suspected that her pain was due to serious edema and the increase in subcutaneous tissue rather than an abnormality of the nerve conduction velocity due to peripheral polyneuropathies .

            

7)  Complex decongestive therapy including bandaging was actively performed after the patient's tenderness on pressure was reduced. Upon symptom improvement, dietary modifications were attempted in consultation with a nutritionist in conjunction with an exercise prescription that focused on aerobic exercise.

                              a.  The treatment continued for a month.

                              b. There was no significant change in total weight over the treatment period, but the reduction in edema resulted in decreased circumference of 2.75 cm and 2.45 cm in the right and left lower extremities, respectively. 

CONCLUSIONS:

Other characteristics of lipedema include hematomas or petechiae that can easily arise from a minor shock or slight touch due to the increased fragility of the microvessels.

Serious pain on palpation is relatively common in lipedema compared to lymphedema, and it is rare to find a medical history of cellulitis.

Complex decongestive therapy cannot affect fat tissue, but can contribute to treatment by reducing interstitial  edema.

No bandages should be used until the pain subsides because, unlike lymphedema patients, those with lipedema report pain and hypersensitivity in the edema areas when complex decongestive therapy is performed.

The use of bandages after the pain disappears is helpful in reducing edema.

According to several reports, a reduction in the excessive fatty tissue in lipedema is possible if the compression stockings are worn constantly and if compression bandages are applied at night.

However, continuous treatment is critical because the edema will recur or worsen if complex decongestive therapy is stopped.

It is extremely likely that lipedema can be improved if proper treatment is applied before 35-years-of-age, but delayed management makes the prognosis of lipedema similar to that of lymphedema as the disease progresses to lipolymphedema.

     

The last interesting thing about this article is that many new researchers were named from across numerous disciplines and countries: Weisseleder and Schuchhardt in Germany;  Child, Gordon, Sharpe, Brice, Ostergaard, and Mortimer in England; Pascucci, Lynch, Rudkin, Miller, Macdonald, Sims, and Mayrovitz in America, and Szolnoky, Nagy, Kovacs, Dosa-Racz Szabo, Barsony, Balogh, Kemeny in Hungary [Hungary????**&!], all of whom have produced papers directly addressing lipedema, and all within the last few years.  If you would like read the article for yourself, go to http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3309375/

I could not be happier with the growing awareness of lipedema in the medical community. The time will come soon when our doctors will have to believe us now that even agencies of the federal government have taken up our cause.