I'm curious as to how our experiences are similar or different. I haven't read much about the onset of symptoms-- when and how they developed.
For me, the swelling started when I was in college at the age of 19. In January/February, I noticed sometimes my left foot would hurt and my boot felt tight when I got up after sitting in class. By March, the pain got worse and my foot was constantly swollen around the ball of my foot and toes. I thought that I injured my foot, and went to a podiatrist and got an x-ray, they found nothing wrong (I realize now that the pain was just from wearing tight shoes on a swollen foot). After staying off my foot for a while, the pain went away but the swelling didn't. In April, I noticed that my right foot started to swell, too. I started seeing every kind of specialist doctor, all the tests came back negative. Pretty soon, the only shoes that fit on my feet were loose sandals. In June, I went to a music festival (camped outside for 4 days in heat and high humidity) and by the end of it, the swelling noticeably extended all the way up my legs and I could barely bend my knees. I went to the ER, they ran more tests and they all came back negative. Shortly after, another doctor misdiagnosed me with Lymphedema, but I never really believed it.. finally, after a little more a year I found Dr Check and was correctly diagnosed.
Of course, bregle! Interesting that you had tons going on too. Maybe we had the swelling & it was mild & the stresss threw it over the edge...Seems like there’s some correlstion. The whole consipation thing isnt something I recall having issues with hen I was young or even now. So interesting the similarities & differences!
Thank you for sharing! klkl, I think it is really interesting that you bring up stress- my family has told me time and time again that they think stress contributed to the onset of swelling. I was in my 2nd year of college, had awful roommate issues, a heavy courseload, stress from other extracurricular activities, and hormonal changes on top of that because I also had just gone off of a birth control pill that I realized I was having side effects from.
ehbscorp, do you think the constipation was connected? I also had chronic constipation as a child. I always had super skinny legs but my abdomen was distended.. I haven't looked at any older pictures recently but it was apparent in photos from high school.
I look at picture when I was about 8 years old. Little tiny legs and distended abdomen. I had chronic constipation and my Mom took me to a chiropractor which helped. In my teens I suffered with painful swelling prior to my period. I used to say I lost the week or two before and then had my period so I was good about one week a month! I wasn't diagnosed until 2005 by Dr. Check but I always knew something was wrong. I would also leave in the morning with clothes that fit and by the time I came home I had to unzip or unbutton whatever I was wearing. I had hormonal issues and they placed me on birth control pills to control the painful menstruation. One worked great but I couldn't pass a bathroom without peeing. Most of the time I was never thirsty and would urinate only a few times a day but at night I almost always had to get up to urinate which makes sense with this disorder. So for me since childhood, worsening in adolescence and thankfully got a pain management doctor (for my herniated discs) who sent me to Dr. Check. The doctor knew Dr. Check since he was a kid and lived next door to him. He told me if Dr. Check couldn't find out what was wrong no one could. So undiagnosed most of my life. I can mange it well now. At it's worst I would wake up with bags of fluid under my eyes. Scary and I screamed the first time it happened. I only had edema in legs and feet once as it is mostly my abdomen and upper legs when it occurs. I recently had to up the med for a few days and now back to normal dosage.
Mine started in 2000, it was a super hot summer day & I’d started a new job, was going through a divorce and my mom had breast cancer. I mention this beacause I had a lot going on & was highly stressed & wonder if it was the catalyst & if anyone else had a stressful experience at
onset? While IDr. Check has said that stress doesn’t bring it on it certainly doesn’t help matters. Anyway, recall that my clothes were really tight in comparison to the morning. I had to change my shoes into slides that had elastic material because my feet were so swollen. They looked like Fred Flintstone feet! I remember going home & taking my clothes off & looked in the mirror & couldn’t believe what I looked like. I was so consumed with everything going on I barely noticed what was happening until that moment. I stepped on the scale & had gained 8lbs in one day. A-week or so later my body would start to release the fluid, by the next day I’d be my normal weight . It was the most bizarre thing. The pattern has changed a lot since but it’s a relief to know that you guys are out here! Thanks for sharing!