I am so glad to hear I am not crazy.... I had a tummy tuck and breast reduction couple years ago and had major complications from the surgery. Ended up having many, many surgerial debridments and spent months in the hospital. After almost a year of recovering, I then develpoed lymphedema, they say its from all the scar tissue and the complications I had. I am solid scar tissue in the breast and abdom and am bigger now then before I had the surgery. This is new where I live I guess because doctors kept saying lymph doesn't effect the torso only the arms and legs and I was just gaining weight. I can't tell you how many doctors I have been to and they all say we can't help you. I saw a doctor in Chicago i did have the test done with the scan to see where the blockage was (and just let me tell you that was very painful) but they could not detect because the medicine could not get past all the scar tissue.
I read through several post and I see some that talk about excerise. I would love to, however I can't. I used to be very active and small things like pulling weeds in my yard or cutting the grass even cleaning the house anything I do that causes pressure on my stomach or things that you have to bend over for causes my stomach to swell and the pressure pushes on my diphram and I can not breathe. Whenever my stomach is really swollen I can't breathe. It has woken me up in the middle of the night I will wake up gasping for air.
The pain that goes from the left side of my chest up to the neck and into the shoulder an neck gets really tough, I would never know if I was having a heart attack or if its just the lymph backing up.
After dealing with it the past couple years in the torso I am now beginning to have more and more in the arms and legs. The other day I could not even see my knees.
How do you get the doctors to believe you when they don't know enough about it? I can't wear compression garments because of the pressure and not being able to breathe. Luckly I found a physcial therapist who know about this but I can only see her 1 time a week and for an hour. Thats not enough!
What do you do when its a weekend or nighttime and you have a bad flair up? can't go to the emergency room they look at you like your stupid and say its anexity. That happen once I was out of town and the pressure in my chest was so increadible it felt like a heart attack. Doctors said oh your fine, test came back normal it must be anexity. They make you think, well am I no one seems to know what I am talking about they says no documentaion to support torso lymphedema. What do you do when there is no one to turn to, no one to help, how do you relieve the pressure? Do you guys get sometimes an overwelming feeling of being tired??
My legs now swell and get so tight feels like the could just bust open. Any help, imput, suggestions or doctors to see would be great!!
This is a great site, things make sence now at least.