My Story With Lipedema

Welcome to my Lipedema story!  If you are reading this you probably have or suspect you might have Lipedema. If you suspect you have Lipedema please read the other information on my site on how to recognize, diagnose and treat your Lipedema as soon as possible!  Starting treatment early is paramount to halting the progression of the disease!

Early Years

As for my story I was born at a normal weight and never had weight issues all through elementary and most of my middle school years.  However, when I hit puberty the normal body parts starting changing (hips rounding, more curve in the waist and enlargement of the breasts) and my mother and family doctor said everything was progressing normally.  My eating habits and physical activity levels did not change during this time.

I would have to say sometime in my mid high school years I noticed my hips and thighs were growing a little larger even though I had not changed anything else in life (including my diet).  I remember school shopping with mom and her commenting on how I had to go up in size in my pants to fit my slow growing lower body area.  At the time she wasn’t concerned as she knew my eating habits were normal and it was probably caused by my limited physical activity.  I agreed with her and didn’t give it a second thought.

College Time

After high school I went off to college where I lived on campus and had to walk distances to get to my classes. Due to financial issues I could only afford to eat two meals at the cafeteria per day, which was usually breakfast and dinner, and didn’t store much food in my dorm room.  I thought for sure with my mostly healthy limited diet and all the walking I had to do in a day (about 2 miles) I would surely be able to drop a couple of pant sizes that I gained in my high school years.

After a year of this pattern I noticed I had only lost a couple pounds, nowhere near what I thought I would lose.  I got great muscle tone, but the weight just wouldn’t seem to drop.  This was baffling and our family doctor said I just needed to eat a healthier diet and implement a regular exercise regimen.  Needless to say, this didn’t work!

Marriage

I left college after only a year and decided to marry my high school sweetheart at the age of 20.  I can remember shopping for a wedding dress and being devastated that my weight was up to 215 pounds and I was well into 20+ size clothes. I was happy to get married but upset by how I looked, especially being the center of attention, on my wedding day.

We lived overseas in Japan for three and half years while he served in the US Navy.  We lived off base in a local Japanese fishing village.  We loved our neighbors and walked all over the neighborhood at night.  We ate a fairly healthy diet and got a lot of exercise.  However, my weight continued to climb and the pant sizes kept increasing.

After the Navy my husband did three years in the US Army.  We lived in Germany where I was diagnosed with GERD  (Gastroesophageal Reflux Disease) and IBS (Irritable Bowel Syndrome).  Again more weight gain and no answers!

My First (Unknown) Lipedema Complication

During the 1990’s I graduated college with a BS in Business Administration/Computer Information Systems and went to work for a tech company who paid me a great wage.  During the mid 90’s I had my first ever strep throat out of nowhere and delayed getting it checked it out because I thought it was just a sore throat.  Then both my lower legs swelled up bright red and hurt so bad, like a really bad sunburn, that I lay on my bed crying in pain for two whole days! Turns out that I was allergic to the Augmentin (antibiotic) which I was prescribed.  I also took it too late into the infection, whereby the strep toxins circulating in my system ended up settling into my legs.  This caused the development of a 3 inch round open sore on my left ankle that took months to heal. 

fyi iconNote – now we know that was my first bout of cellulitis – a common enemy to those who suffer with Lipedema and Lymphedema!

By now I was about 300 pounds and noticing in addition to widening hips and thighs that I also had significant swelling in both my legs.  Again my doctor strongly advised me to get more exercise and a better diet!  He missed the part where I said can’t you see both of these things were not working!

Sadly, my company was closing their office so my husband and I decided to break out of the east coast rat race and head west.  We settled into our new home and I landed a great job working with a health organization assisting Native American communities with their healthcare needs in the Northwest.  My weight had been steadily increasing, but I could still get business clothes through online stores such as Roamans, Woman Within and On the Plus Side so I just kept forging ahead without any clues or answers.  What other options did I have?

Our Children

In 1998 we made the decision to adopt our first child.  My husband and I traveled to China in July of 1999 to unite with our first sweet baby girl.  Now I started having problems walking distances, which they do a lot in China, climbing stairs and breathing hard after a short distance or in hot heat. (China in July is hot and there is limited a/c and no safe ice for un-acclimated Americans!)  I believe I was about 385 pounds during this event.  My lower legs were discolored, they swelled terribly and were extremely  painful.  My only relief was elevating my legs higher than my heart for as long as I could (which isn’t long when you have a new baby to care for!).

In 2003 we adopted our second sweet baby girl.  However, this time my husband and mother went to China without our first child and me.  I was on crutches with knee stabilization problems and walking was too painful to travel back and forth to work never mind  around China. I was about 50 pounds heavier than when we adopted our first child and was still struggling to find a solution to this increasing swelling and weight gain!

My First Diagnosis!

In 2001 I went to see my doctor, who said and did nothing about my painful body and leg size.  However, I was pleasantly surprised to be met by his new intern.  He jumped back in shock and asked who was treating my lymphedema!  I said what’s lymphedema?  He was so shocked that no one in my last 15 years had diagnosed me with it nor was treating this very debilitating condition. 

fyi iconNote – It turns out I was already at Stage 4: Lipo-Lymphedema entering treatment, only no one knew about the Lipedema!


Here’s where I will disclose this intern was fairly new out of school and had some minimal training in lymphedema.  Older practicing physicians and even most today rarely get training in the recognition or treatment of lymphatic disorders, never mind adipose fat diseases!  This is where you and I and the rest of our affected community need to become advocates and educators to spare people from getting to this painful stage.  Early diagnosis and treatment is the key to living a good quality of life with these conditions!


I ended up in Physical Therapy, thanks to my doctor’s intern, with their specialist in lymphedema who actually trained with experts in Germany.  This is notable as Germany is known for its aggressive study, diagnosis and emerging treatments for Lipedema.  She immediately performed and taught me manual lymph drainage (MLD) techniques, compression bandage wrapping, and sequential compression via a lympha-press pump.  Unfortunately, the lymphedema was also present in my upper arms making it difficult to wear tops with sleeves.  At this time we only focused our care on the legs and never got around  to dealing with the arms.  She said I was the second worst person she had ever treated if that is any indication how bad my condition had progressed!

I took these techniques home and continued to bandage wrap both legs every day before heading off to work.  Now I was well over 400 pounds and struggling to travel and walk around work.  I brought in an ottoman to keep my legs elevated during the day, but found I could not keep a good posture while working on my computer in this position.  So, I suffered with terrible pain all day at work desperately waiting to get home where I could put my legs up for pain and swelling reduction. 

Astoundingly, even at this large frame and weight I was still able to reach the floor with my palms and bandage myself from my feet up to my knees on both legs.  (Hypermobility is one of our co-morbid  conditions due to it being a connective tissue disorder.  The Ehlers-Danlos Society (EDS) has updated their diagnostic criteria to include the broader Hypermobile Spectrum Disorders (HSD), for those who show no other signs of EDS but experience hypermobile joint issues, and Hypermobile EDS (hEDS), for those with additional EDS signs and symptoms.)

After a couple of years of applying compression bandaging to my legs the  Physical Therapist asked me to try Circaid garments, which would reduce the amount of time bandaging.  (Circaid bandages have about a dozen Velcro straps that lace across your legs, which you can adjust throughout the day to maintain compression.) Unfortunately, they did not work for me as my legs are not ideally conical in shape.  Odd shaped legs with bulges (aka shelves or saddlebags) do not work well with this technology as the straps tend to slide and bunch up in the leg creases causing pain with  possible blood and lymph flow issues.  We also tried Farrow wraps, which are slightly better, but produce the same problem.  In the end I had to go back to compression bandage wrapping and did this for about twelve years.

Serious Illness

In the 2007-2008 time span I had strep throat at least three times.  During my last bout I was given cephalexin and discovered I was allergic to this antibiotic.  Without the function of the antibiotics, toxins travelled throughout my system and eventually settled in my legs.  Both legs got bright red with burning pain and I was running high temperatures – 104+ degrees Fahrenheit.  My doctor gave me the choice of immediate hospitalization or care via home health services.  Naturally I took home health care so I could be with my family and help my girls with school.  I had medications delivered every couple of days so I could take injections through a PICC line in my left arm. It was very serious and scary illness for all of us as I had never been this sick!

While recovering from this serious bacterial infection, I noticed a hot burning pain on the back of my right leg.  A flesh eating bacteria wound had opened up from the inside of my right leg.  We went through all sorts of shots and creams and nothing seemed to work.  I had one more chance from the Wound Clinic before they wanted to debride, or cut out, the infected parts of the wounded leg.  The last ointment we tried worked!  It was ugly, very painful and took a long time of oozing before it began to scab.  It took nine months to completely heal this sore!

Warning SignCellulitis infections are very serious and can be extremely harmful to those of us with Lipedema and Lymphedema! 

My Physical Therapist, who also treats these kinds of wounds, said she has had people with open wounds for over a year.  They just can’t get them to close, which means their risk of further infection is very high!

It was at this time I had to use two bariatric canes to walk again.  I was seriously weakened by this event and developed knee stability issues, so I had to use mobility aids to walk.  I have been using these canes ever since the infection and rely on them for support and joint instability when walking.

A Revelation

In 2013 at nearly 500 pounds I had extreme problems walking, driving and wrapping my legs.  My knees kept sliding around or dislocating, which would keep me out of work for a days at a time.  (Luckily I could telecommute during these times to try and stay on top of my workload.) The stress of the job and trying to cope with my failing health was too much to bear.  In 2014 I was let go from work and ended up on Social Security Disability.  The severe osteoarthritis in both my knees, which had been worsening for years, made it next to impossible to walk more than about 30 feet without searing pain.  This pain was only mildly mtigated by quarterly cortisone injections in both knees.

A couple months later I decided to take a Weight Management class sponsored by my health provider to find a means to deal with this extreme weight.  After eight weeks of dedicated dieting and exercise – only 2-3 pounds loss!  My teachers were baffled and suggested I talk with a bariatric surgeon for reduction surgery.  I was depressed, angry, frustrated and feeling no one could help me with this life-threatening problem.  Where else do you turn –  God then Google!

Backside of my Legs Aug 2016
Backside of Legs during Therapy before losing 60 inches in the lower legs – August 2016!

After following a trail of lymphedema posts I came upon some sites talking about Lipedema. Once I read the symptoms, saw the pictures and read people’s stories of life with Lipedema I knew I found my people!  I hired a Physical Therapist (who was/is a God-send) to work on my legs.  She taught me how to effectively wrap with stiffer foam to get better compression results – and it worked!  I was able to get 60 inches total off the bottom of my legs. We then ordered some Biacare wraps (now Sigvaris), which I absolutely love, to wrap both lower legs each morning. They are such an easy and effective compression treatment and they do not bunch or slide into the folds between the shelves!

Unfortunately, I have a VERY large lobule on the back of my left leg, which makes it difficult to move and walk, so that I cannot get my health provider to authorize further Physical Therapy visits.  This leaves me to find a means to deal with this on my own. I have now moved from a 4 chamber pump to an 8 chamber pump, which has done a fantastic job reducing my upper legs and breaking up fibrotic tissue.  I am also researching water assisted liposuction (WAL) to see if my size and shape would be a fit for this procedure.

For now I have to live with very painful lipomas under my skin from my arms down to my feet.  These clusters of Lipedema fat press on my nerves making it extremely painful for people and pets to touch me.  I can barely tolerate a blood pressure cuff on my lower arm.  I bruise easily.  Small bumps into walls or furniture or sometimes just over-stretching my leg will burst a cluster of capillaries giving me large (sometimes unexplained) bruises.

Foldover flaps of skin are painful and a good source of frequent infections, which is why good hygiene is paramount to avoid tears and sores in the skin.  At this size my legs frequently have tougher fibrous tissue and masses under the skin, which is why MLD and sequential lymphatic pumps are very important in my daily routine.  This helps break up those gelatinous masses that can clog lymphatic and vascular functions, creating further problems down the road.

Oh, did I mention that in 2013 I started going through menopause.  This is one of those major changes in life where hormonal levels start fluctuating making a Lipo-Lyphedema situation worse.  It’s like throwing fuel on a fire!  Looking back I can see this is why my legs got larger and more painful, my osteoarthritis increased in pain and other conditions starting rearing an ugly head.  I resorted to getting quarterly cortisone injections in both knees to help lessen the pain and allowing me to walk.  You will find out more about how hormonal changes foster these type of changes in another post.

Update 10/20:  The backside of my legs have reduced significantly from the picture above and the pressure ulcers are gone.  The lobule is much smaller and I hope to have it surgically removed at some point.  I’ve lost over 60 inches off the lower legs and the knee overhangs have reduced in size, allowing me greater mobility and general movement.  The condition can be reversed, at least to a point.  My goal is to work hard to see how much progress I can make towards regaining full mobility and fitting into jeans again!  (New picture coming shortly.)

Insult to Injury

As if dealing with Lipo-Lymphedema wasn’t bad enough I was getting sicker with stomach aches, bowel problems, fatigue, fibromyalgia, flushing, increasing inflammation and losing my hair.  All my tests came back fairly normal except the gluten allergy test from my Allergist.  Bingo – we discovered I have Celiac Disease and had to change my diet to be totally gluten free over night.

I also have classic signs of mast cell activation disease (MCAD) and was put on H1 blockers, which suppress the body’s histamine effect (Zyrtec), and H2 blockers, which suppress gastric acid secretion (Zantac).  I was also low in vitamin D and have to take daily supplements to keep my levels up. (This is a common problem with Lipdema and will be covered under a nutrition section.)

I also had an ultrasound in 2019 to check two nodules that have developed on either side of my thyroid gland.  Thankfully they are benign and just need to be monitored over the next few years for any changes.  However, I know having at least one auto-immune disease increases your chances of having multiple auto-immune diseases, which are all related under the covers.  It’s never dull!

I also need to modify my diet to be low in oxalates as I have had five bouts of kidney stones in the past three years.  I have a family history of stones, but it seems so unfair to keep heaping on the conditions! I truly couldn’t make this up if I tried…

The Takeaway

Part of the blame in allowing my condition to progress all the way to Stage 4: Lipo-Lymphedema lies with the numerous physicians who could not recognize the disease (which is not entirely their fault due to lack of medical training in this area) and therefore could not direct me to timely help.  The other part of the blame is mine. I was so busy advancing my career, growing a family and being sole support for a while that I did not take the time to stay on top of this evolving  strange disease nor complain to my doctor adequately.  Do not wait until you absolutely fall apart to take an active role in your health even if the “experts” have no answers.  Google, Bing, Yahoo, Facebook or however you search for information and be proactive, especially with this progressive disease, and advocate for your right to definitive health care!

If you suspect Lipedema or Lymphedema get help today!  Do not wait!

To your improved health!  (More pics to come…)

Esther

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