Lipedema

janiew171

I have Lipedema also known as "painful fat syndrome". I follow the RAD diet plan, somewhat, mainly limiting my carbs and sugar intake. I've lost 30 pounds since July 16 by making this change. I'm using some Plexus products that have vitamins and minerals highly suggested by the leading Lipedema research doctor to help with the discomfort and inflammation associated with this disease.

Lipedema is an incurable, chronically progressive disease that occurs almost exclusively in women. You can't "diet away" Lipedema. The disease causes a symmetrical accumulation of fat in the subcutaneous tissue that disproportionately affects the lower limbs from buttocks to ankles. The legs may also be sensitive and prone to easy bruising. In some cases, the upper arms can also accumulate distinct patterns of fatty tissue. Lucky me I have Lipedema from my shoulders to my ankles. According the my Lipedema specialist, if you have Lipedema there is really no place on your body in which it won't affect, even your scalp and lips.

Lipedema is little known, under recognized, and generally misdiagnosed as simple obesity. Despite the fact that it's been named for over 75 years, it is only recently that interest and education about Lipedema is gaining in awareness. Estimates of the incidence of Lipedema vary widely, and range as high as 11% of the post-pubertal female population, with estimates of 17 million women in the US, and 370 million women worldwide affected.

So why am I telling you this?

In talking to my sister last night I made confession. Something I've never told anyone. I told her I have had the pains I can now associate with Lipedema for YEARS. Of course I didn't know then that the pain and discomfort I have was associated with a disease.

I didn't tell anyone about the pain I felt at the end of each day because I knew they would automatically attribute the pain to my weight. And honestly, if I had a dollar for every time I heard, "if you could just lose some weight" in my lifetime I'd be a millionaire. Did they really, truly believe I would choose to be big? And did they think saying those words would motivate me to lose weight? No, it would just lead to my feeling guilty for being overweight and making me want to hide every feeling or sensation I would have so I wouldn't have to hear those words again.

I have struggled with my weight since I was in 8th grade. I'd lose some, gain more. In 2005 my boss, who I believe truly cares for me, offered me a bonus plan. The bonus would pay for half the cost of the Lap-Band procedure that insurance wouldn't cover. I would pay the other half as a way of having "skin in the game". So I had the surgery and lost some weight. However, the weight wasn't coming off as quickly as my bariatric surgeon thought it should. On my visits he'd question me on what I was eating, how many calories, was I working out. I would tell him I was following his plan as instructed. He said I was being untruthful, it would be impossible for me to not be losing more weight if I was following his instructions. So what do you think happened? I stuffed down my feelings and decided it wasn't wise to share how I felt because now I'm a "liar".

Wow, I never realized how many psychological issues are tied to Lipedema. It's not just physical pain, it's emotional pain as well. Because I didn't want anyone to know what I was going through I would "fake" my way through each day. If I didn't act as if I was in pain then they would believe I was ok.

It is so sad what society has done to so many people like me. So now I feel I have to use my voice to tell people about this disease. I hope to offer inspiration to those with Lipedema to stop hiding in shame and to speak out about about their experience to their friends and families. It's not just that we are overweight and all we need to do is cut back on calories to lose it.

If only it were that simple.

If you have ANY questions about Lipedma please do not hesitate to ask me.

sharifit53

I have lipedema too, although I haven't gotten an official diagnosis yet (next week). The hardest part with regards to weight is figuring out how much I can control and how much I can't. I know I also have obesity and some of it I have to take responsibility for without blaming myself for the part I cannot control.

amandareneefenton

I have lipedema as well! I was able to get my first surgery covered. To put a long story short, my *healthy/fit* lifestyle was and sting disorder that came from being afraid of gaining more weight. I’ve been on “prescribed inactive” for since the winter of 2016 now for a few other issues (mainly CFS/ME, PoTS, and chronic pain) but I haven’t been able to work out since the beginning of 2012 after a concussion. I’ve spent the last 6 years fighting for my health and finally have answers, treatment plans, and goals to hopefully get me better than ever. Lipedema is a giant bucket of worms, but we can kick it’s butt and show it who’s boss.

projectsix

Have nothing to contribute but there's a diet plan called RAD? Talk about just setting you up for success. I don't think it's possible to fail with a diet named like that.

Muzzoozal

I have Lipedema also and am on the RAD/anti-inflammatory diet from the book Lymphedeme & Lipedema Nutrition Guide. Of course there is much pain involved, I wrap my legs - which means I must wear pants so they won't UN-velcro each other an d use a compression machine. My diet is strict - n dairy, breads, pasta, sugar and though I've dieted before I now am looking at a pattern of eating I will need to do the rest of my life. It helps. I've lost 5 lbs in 2 weeks eating beans, veggies, fruit, etc. I compress 2 times a day 1 hour each which means I can't get up (it's like wearing to thigh high canvas socks!) I decided I've had enough depression and other negative emotions in my life so I am looking at this as an adventure and research on living. When stuck in compressing I can draw, stitch, read, etc. I am learning to starve the fat and get as healthy as I can with the help of my local Farmer's Market. I stay motivated to my pattern of eating becasue my life depends on it - a nice little motivation - haha! I have to change my eating becasue exercise isn't a big option right now. Would love to hear from others - keep up the good work you're doing

claudibilis

Tengo lipedema con un peso cercano a normopeso. Durante toda mi vida he estado pendiente del peso, todas las mujeres de mi familia padecen sobrepeso. Hace pocos meses lo descubrí, el lipedema estuvo oculto por mi gran actividad física y mi continuo control alimenticio. Soy una persona positiva y nunca he tomado anticonceptivos. Supongo que todo ello, unido al desconocimiento de la enfermedad ha contribuido a no ser consciente de mi situación.

En estos momentos, llevo medias de compresión a diario, no tengo intención de someterme a operación. Me mantendré mediante control de nutrientes, ejercicio físico y optimismo.

Mucho ánimo para todas.

ITZ_BITZ

My story is the same, except for the lap surgery - I couldn't get that done because I was told I had to lose a 100 lbs first. Um.... if I could "lose a 100 lbs" I wouldn't have thought that I needed or wanted the surgery. I've tried for the last 3 years, since they told me that, to lose a 100 lbs. I haven't been able to lose but approximately 30.

I've been on a "diet" for over 48 years, experienced the same, lost some but then, just gained more. Just in the last two weeks I was diagnosed with Lipedema, and it was explained to me. I was told to join a support group, and also go to lipedema.org

Seriously, I'm struggling with a whole bunch of crazy roller coaster thoughts and emotions. How can doctors assume the worst, aren't they supposed to know these things!?