What it’s like for me to live with Ehlers Danlos

This week is Rare Disease Week and I’ve often talked about how this disease affects one of my daughters, but today I’m going to talk about how this disease affects me. When my daughter was diagnosed, I was basically diagnosed. In other words, after years of trying to figure out what was going on with our daughter, a doctor at Duke Children’s Hospital figured it out. You can read more about her story here. To make a long story short, the doctor told us that this disease is genetic and inherited, so she proceeded to ask me and Todd a series of “Who can do this? Who has these symptoms?” questions and my hand was the only one popping up. The doctor looked at me and said, “Well we know who she got this from!”

It’s so weird because, after several years of learning, I can now look back on my life growing up and know that some of the issues I experienced were most likely because I had EDS and never knew it. The hip pain, the way I walked (pigeon-toed), constant knee pain, and low back pain would take me out of school. Thankfully, since mine was pretty mild I didn’t experience dislocations that I know of, but my joints were always popping.

But that was when I was a kid, what about now? I’m going to admit my age here, I’m 50. I was diagnosed at 41 and it was confirmed by my orthopedist three years ago when I went in for knee surgery. It’s weird because I’m actually still dealing with most of the same issues that I had when I was a kid, I’ve just gotten used to them or I’ve learned over the years how to deal with them and some new ones have come along. Overall, I will say, most of my issues are thankfully mild, and some just drive me nuts. You may be wondering what my actual symptoms are, so here’s my list:

• Serious flexibility (Hypermobile)- I could kick higher than anyone in dance class when I was a kid and splits were a piece of cake. I could bend in ways a lot of my friends couldn’t, and still can even at 50. Today, I’m still pretty flexible, which I love, and hope that I get to keep that.
• IBS – My stomach issues started in high school and have never stopped. I’ll spare you the details.
• Reflux- Because the flap and muscles that help this are stretchy and don’t work as they should.
• Adenomyosis and horrible painful periods since they started. This was almost debilitating. It had gotten to the point where I was really sick. You can read about that here. Thankfully due to a hysterectomy this is no longer an issue.
• Scoliosis – I have lived with low back pain my whole life, like every single day. Exercise helps some. But I mostly just deal with it.
• Hip Pain — Since I was a kid (most likely I tore something and never knew it.) One day, I’ll have to get this checked out. I’m trying really hard to avoid surgery. My leg bones don’t sit in the socket correctly, which gives me awesome flexibility, but lots of other issues like pain.
• Food Allergies – This goes with the immune part of the disease and I’ve had weird and rare food allergies since I was a toddler. Anyone here allergic to oranges and garlic? Also allergic to hibiscus, weird, right? I’m currently looking into getting food allergy testing because I keep breaking out into hives when I eat and I can’t figure it out.
• Seizures/passing out when I was a toddler. Thank God I don’t do that anymore.
• Dermatographic skin – Can you write your name on your skin and it stays there for a long time or your skin is super sensitive to touch? My face turns pink/red every time I put on moisturizer, makeup, or just touch it. Not to mention I break out in hives.
• Dislocations/subluxations – I thankfully don’t do this very much and so far, they’ve not been complete dislocations. I have a shoulder that likes to slip on occasion, a rib that likes to pop out and my ankle doesn’t like it when I wear heels. But I love my heels! So I deal with it. Today, my knee decided to slip out a little while at Home Depot.
• Joint pain and swelling
• Easy bruising
• My IT Bands are always painful, so I try to remember to stretch them daily.
• I stay up late and don’t sleep well. It’s hard for some people with EDS to go to sleep at night because we can get this crazy burst of energy at bedtime. I used to love it because I could clean the house when the kids went to bed, but now I just want to go to sleep.
• I can’t get numb at the dentist – no matter what and that is a pain.
• Brain fog. What did I forget now?
• Headaches
• Neck aches because the muscles in your neck aren’t strong because they’re stretchy, which also causes a lot of the headaches

I’m sure there are things that I’m so used to that I didn’t even list. I’m so thankful that the symptoms I have for the most part have been pretty minor. My daughter, on the other hand, is on the extreme end of the spectrum. As with any disease, there is always a range from pretty minor to extreme. Thankfully, I’ve only had one orthopedic surgery and that was my double knee surgery (here). But like I said, I’ll more than likely have hip surgery too and some days, I’m ready to jump on the table and say fix them now!

I’m at the point where I’m really trying to learn what I can do to help myself right now and as I get older. I want a healthy body and a strong immune system. I also want to be able to move around without pain, or at least minimal pain. Most days are pretty good. I also live with chronic Epstein Barr so that adds another layer to things. Taking supplements has helped. They can’t fix everything, but they do help me.

Living with EDS is like always trying to solve a puzzle. Currently, I’m trying to figure out what is causing hives on my face after eating. I can’t seem to figure out what food is causing it so that means I need food allergy testing. I need to make sure that I’m exercising because it really helps me all around. It can be really hard to motivate yourself when you’re already hurting before you start, but it helps so much. I’ve also started working with my doctor learning what vitamins and supplements would be good for me to take and any testing that I need to have done.

My day to day is pretty normal, I’ve just learned to live with this as most people that have issues have done. Some days are great and other days I just want to stay in bed. I typically make myself get up and get moving because, for me, movement helps. Thankfully, I’ve been very fortunate because it could always be so much worse. Some days can be rough and now that I’m not a young person anymore, it’ll be interesting to see how this changes over the years. I’m always learning and the science is getting better with EDS. But for me, this is what it’s like living with EDS. Do you have EDS or some other disease or issues that you live with? What’s it like for you? Praying for health and healing for all of us.