Lipedema Story - Misty
I nearly cried when I read Silkies post.
Hi Everyone. My name is Misty and I'm new here to this forum. I'm 36 years old and I believe in my heart that I have lipedema with possible secondary lymphedema setting in.
As a child I was not obese. I am 5' 5" and as a teenager I weighed between 130-150 pounds. At one point I shot up to 165 and my mother took me to the doctor. The doctor looked at my mother and told her there was nothing wrong with me except that I was fat and that she needed to stop feeding me. I was 14 years old. That is when serious weight issues started for me.
For the next five years my weight would yo-yo up and down. I would get up to 160-165 pounds and crash diet back down to 130. I would starve myself and not eat breakfast or lunch for weeks at a time. Once I went 3 days with out eating anything at all. I would only drink water. I would have kept on going without food for who knows how long, but my mother found out and forced me start eating again.
I too lived with the constant ridicule of my peers. I was reading in one of the other forum posts that someone was called "thunder thighs". That was my nick name as well in school. And the funny thing is that when I look at pictures of myself back then, my legs were very normal looking. They really were not out of proportion yet. Now my legs look like massive columns and I long for the days of my teen years when I still looked normal.
When I turned 18 I decided to join the military. I almost didn't get in because they said I was too fat. I weighed 165 pounds at the time. But they let me in after they did a body fat test of some sort and said I was proportionate. But I was told that they would get me into shape and make me lose weight. This was the time that should have started giving me my first clue that something was seriously wrong with my legs. After being in boot camp for less than a week, my legs swelled to twice their normal size.
My feet also swelled badly and I had blisters that were so bad I had to go to the hospital. The doctors at the military hospital put me on bed rest for a week to try to get the swelling under control. I was sent for a myriad of test for this and that. And some quack decided that it was a pinched nerve in my back that was causing the swelling and I needed to be shipped off to another hospital for surgery to correct the condition. When I refused to be a guinea pig, the military forced me out on a medical discharge.
Just months later I was home and dating a guy and ended up pregnant at 19 years old. Pregnancy was not kind to me. I gained 50 pounds and had horribly high blood pressure. I was hospitalized twice for the blood pressure and because my legs were so swollen that I couldn't get around any more. After my baby was born, I struggled to lose the weight I had gained during the pregnancy.
I never did fully lose it all. And to top it all off, my legs were staying big.
Jump ahead a year and half and I was pregnant again. This time I was bound and determined not to gain as much weight. I only gained 11 pounds with my second pregnancy. My second child weighed in at 9 pounds, 8 ounces. After all was said and done, I had lost 36 pounds of my own body weight during my second pregnancy. But, again, I had high blood pressure and severe edema which I was again hospitalized for. My legs were still big.
As the years past, I went to a few doctors trying to find out what was wrong with me. One doctor looked at my legs and said I had the worst case of edema he has ever seen. He put me on a VERY strong diuretic and said that my leg problem was just water retention. The diuretic dehydrated me so badly that I began to have horrible heart palpitations. I called the doctor and they had me come right in thinking I was having a heart attack. They ran test and determined that I now had a heart arrhythmia. I still wonder to this day if the diuretics are to blame for that.
Skip ahead a few more years and many more pounds. I asked another doctor about my legs. "You are over weight and might want to think about weight-loss surgery. But you will have to lose some weight first probably. I don't know about your legs so I'm not going to diagnose you. You'll have to see a bariatric surgeon." So off the to bariatric surgeon I go. I weigh in at a whopping 398 pounds. The heaviest I have ever been. I ask the bariatric surgeon about my legs. His response......
"Yeah, you have some fibrous tissue growth. My advice to you is buy a pair of slacks and get used to it. Or you can hope your husband makes a lot of money and can pay for you to have plastic surgery. And even if you do have the surgery and lose weight, it won't make a big difference in your legs."
It was at that point I felt like there was no hope at all. I was doomed for the rest of my life. And I still feel that way. I have lost 80 pounds since then, on my own. I never had the surgery and I never will. That was over 2 years ago. I haven't been able to lose any more weight and my legs are getting worse. They ache so badly most days that it makes it hard to get around. I force myself to walk as much as possible. I have to balance that very fine line of resting my legs and getting enough exercise. I am desperate for help. I just want someone to say, "Yes, it's not all in your head. You have a medical condition." I'm tired of being stared at, picked on, pointed at, laughed at, etc. I won't wear shorts anymore except if I'm in the house. I will go to the pool if I think there won't be anyone around. That makes life hard as I live in a part of the country where it's summer for 9 or 10 months of the year. I just moved here last year.
So now that I'm in another part of the country, I have been looking for a new doctor. I have an appointment with a doctor this Wednesday to have my legs looked at, again. I am going armed with as much information as possible. I'm hoping for better luck out here on the west coast than I had back east when it comes to doctors. Maybe I will finally get a correct diagnosis. Cause my biggest fear is that someday I will lose my legs because I was never diagnosed properly. I don't want to end up in a wheel chair with no legs. I just want so badly to be able to do all the things that I used to be able to do. I want to go hiking and camping and bicycle riding. I want to be able to go for long walks with my husband again. I don't want to be in constant pain any more watching life pass me by. I want to live again!
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