The good days are definitely rarer
The past couple of years that the lower left leg has started to swell more, there’s burning, throbbing sensations along with heaviness. I guess the biggest difference is that when I was a younger kid, I knew if I was running around all day or had a lot of standing to do that day, I knew I would be in pain later, but now I wake up with the pain as opposed to having to do something to earn the pain. Now on most days I just wake up with it and it’s kind of like, you have your bad days, you have your in between days and you have those good days.
The good days are definitely rarer as far as the pain is concerned but it wasn’t always like that, it’s definitely something that’s progressed to a worse level as I’ve gotten older. The pain really started to become very noticeable I’d say throughout my later high school years. It’s impacting me in a way right now where I had to leave my sophomore year of college, and seek methods for pain treatment and so far nothing has been successful but I still have a couple of procedures coming up that could make a difference, for sure. So it’s not at a dead end, there’s still stuff to try that could be successful, and it’s kind of trial and error.
Erica, young adult, Klippel-Trenaunay syndrome
It can take a toll on you mentally
It’s hard because where this does impact in my leg, crutches don’t really help because it’s my lower leg. So when I’m in a lot of pain and I need to go out, I’ve found in recent times that a wheelchair helps a lot, but there are days where it kind of goes beyond the physical point and it can take a toll on you mentally. You start to realize that this really isn’t normal, and there are times where you start to question like “why me? Why me out of everybody?” Of course you don’t wish it upon anyone else but you just start to wonder “why was I the one that was given this,” you know?
So I would say when I’m home, I do kind of have this tendency where I tend to keep to myself and not really always communicate with friends because sometimes it’s just really easy for me to stay to myself and to let those sad feelings overcrowd you. But it’s so important for me to fight myself on that and break out of my shell and just make a phone call, send someone an email, keep contact with the outside world. I definitely think that’s very important as far as maintaining a healthy frame of mind while going through this. It just helps to hear, even friends’ stories what’s going on with them in school, so you feel like you have this connection to the outside world that’s really important to me.
Erica, young adult, Klippel-Trenaunay syndrome
Pain was a huge issue
Pain was a huge issue when I was younger, even from the beginning since I’ve had it. I can’t even describe the pain. I could not go up the steps, I had to go step by step like elderly people do, that’s how hard it was for me to walk. I had to stop every minute to take a rest, and that’s how painful it was. They gave me medicine, they gave me all of these painkillers… it was very bad. Right now it’s not as bad, it has gotten better, but I still have it where it’s just difficult to walk, that’s all.
You can tell too, and my back as well, it hurts… It’s good to just massage it and not overdo it too much, and because it’s gotten better over time, the medicines that they gave me have also helped. Being active a little bit, it did help, just kind of releasing the pain a little bit more. These days it’s not as constant, but I still have it here and there. I just have these random episodes where I feel myself that I’m back to where I was, the memories all come back, but it’s not as bad, thank God.
Lena, young adult, Kaposiform lymphangiomatosis
Slight mental trauma
The pain was really severe, to the point that I had some slight mental trauma from it. Specifically when I was younger the pain would be so bad that I would go into a mental shock, it was just so intense. Because my body didn’t feel like I was in any life threatening danger, I didn’t have any adrenaline going to try and relieve the pain. Usually what would happen was the pain would build to the point where I would have to go to the emergency room over and over again. I had multiple surgeries and the pain got incredibly bad, and it was to the point that every time I would blink there was so much pressure on my eye, I actually had blisters developing on my cornea.
Every time I blinked it felt like someone took a needle right to my eyeball, it was horrible. They decided they had to remove my eye, so I had my eye removed and for about 2 ½ years it didn’t cause any problems, I had a prosthetic. Eventually what happened was that after the 2 ½ years the pain just randomly, out of the blue came back and it was worse than it was before for whatever reason and it was emergency room back and forth. We went back to the hospital to see if anything could be done and I had the bleomycin injection and that has really helped and it did take the pain away. And it has been better and I am just hoping that nothing will happen.
Steve, teenager, Lymphatic malformation
Your spine itself actually gets tired
After my first surgery the rods failed because they weren’t suited to support my spine with that much damage done to it. I think after the first surgery I did have more problems with pain and really just sort of general soreness, and it’s hard to describe to somebody who doesn’t know how it feels. People who have spinal fusions, your spine itself actually gets like tired, almost the way that a muscle feels tired, you can actually feel it in your back, like your spine getting tired. So that was a sensation that I had much more frequently back then as opposed to now that I’ve had the front of my neck fused.
Kevin, young adult, Gorham Disease
A lot of trouble with chronic pain
When I was younger my LM didn’t really cause me pain unless I had a bad cellulitis, toothache or was post op. I feel like I was a lot more resilient when I was younger. You heal a lot quicker and bounce back faster when young and healthy. Now, I’m older and I have had a lot of surgeries around nerves, so I have a lot of trouble with chronic pain. My job allows me the chance to stay busy and get my mind off of the pain. But, sometimes it’s too intense and I do have to call in sick and miss work. It has also affected my personal life a lot lately. After a busy day at work, the pain is really bad so I don’t want to go out and do activities that I love doing or go out and hang out with my friends.
Emily, adult, Lymphatic malformation