What does Hypermobile Ehlers Danlos Syndrome look like?
After announcing that I was recently diagnosed with Hypermobile Ehlers Danlos Syndrome and the support you all gave me, it meant a lot. As I said in that blog post, I didn’t want to include any photos in case nobody wanted to see, but you’ve all been pretty positive and I’ve received a lot of personal messages as well with intrigue, so I thought I would share with you what it looks like.
I did want to point out that these are my own personal hypermobility symptoms and I’m aware that every single person in life is different, so every EDS sufferer is going to be different too. I’m aware that some people suffering are a lot worse than me and can’t even keep their joints in, or are confined to a wheelchair, but there’s also a lot with mild symptoms that aren’t too visible. I’m not sure where I would class myself, but if the Beighton Score is accurate, I am 9/9 on that and I would say I’m about a medium level – given the pain.
I said before that I’ve always kept any of my hypermobile joints off of the blog because of abuse I’ve received and just from the general feel that they are not nice to look at, but as I’m trying to help others and shed some more light on the condition itself, I’m doing a blog post for you showing you what it looks like on me and how it presents itself in the physical form. I obviously can’t share the internal symptoms as they’re not visible, but I plan on covering everything a lot more in a series of posts in the near future, as well as methods to help with problems, but lets look at my joints and skin.
Overextended Elbow Joints
My overextended elbow joints are probably the most extreme hypermobile joint on me as they bend too far. Instead of staying straight when your arms are held out or twisted, they extend much further and bend downwards instead. This actually doesn’t hurt me at all surprisingly and my elbows (apart from when I sneeze – they ache) don’t cause me much pain, despite them being extremely lax. I’ve drawn an orange line so you can see the position of the bones and the central parts of my arm, to see the curvature. My shoulders also sub lax and fall out of the sockets if I try to lift anything that has some weight to it. I even struggle with some doors as I can’t push them open.
Off Center & Over Extended Knee Joints
My knees are the joints that I used to suffer with a lot. As a child they would dislocate all the time and pop out of the sockets, but as you can see, they are completely out of alignment. I’m not sure if this is related to my pelvis (it might be) but as you can see from the lines I drew on them, the knee caps point inwards and aren’t straight. The right photo shows the same as what my elbow does as well, my knees extend backwards instead of staying straight. I’ve had a lot of physio work on them and they are much stronger than they used to be – they used to give out a lot and I’d fall down, especially on the stairs, but they do cause a lot of aches and discomfort. I get a deep bone ache when it’s damp or cold and I have to sit with hot water bottles on them. My knees are the reason a lot of people have been horrible to me in the past as well – but it’s something I have never been able to help. It is what it is.
Stretchy Skin & Ingrown Hairs
I have stretchy skin. There’s certain areas that it pulls up and stretches really easily, like my forearm, my neck, my eyelids, my knees, my scalp etc as it has so much elasticity. This is because of the collagen problem. It’s quite lax and takes a very long time to heal if I get blisters or marks. It also bruises very easily and I’m often full of bruises that I didn’t know I even had, or don’t remember doing.
My knees are extremely stretchy and have a lot of extra skin on them which is why I don’t like them. I struggle to wear below the knee boots as the skin pushes up and folds over the top like a muffin, and in shorts and skirts I get a bit conscious of the way they look when I’m stood straight as they look fat. If I’m in tight jeans with knee holes as well, the skin can bulge through, so it’s not great, ha ha.
I also wanted to point out that those little red dots and lumps all over my legs are ingrown hair problems. Due to the elasticity of my skin, my hairs often get trapped underneath the top layer and can become infected. I’ve tried everything possible to get rid of ingrown hairs and I haven’t had much luck at all because of my skin. Tweezing them out is painful and laser hair removal is expensive, so it’s a battle I’m working with right now. At some points, like right now, I currently have at least 35-40, if not more, hairs that are stuck under the skin just on my lower legs.
This is one of the Beighton Score tests where they check the flexibility of the fingers, especially the little one. If it bends into a right angle, it hyper-extends. All of my fingers bend this way and I can create a complete 90 degree angle with my hands. While it’s pain free when they bend like this, the constant unstable finger joints like my knuckles etc. do cause me pain when I’m trying to write, hold things, or just use my fingers in general for various motions. They also lock and you have to pull them to unlock them which makes a cracking noise. My ring finger does this multiple times a day.
Foot Pain & Piezogenic Papules
I thought I would show you my feet as I had no idea about these before my visit to the specialist. Those little white lumps on the heels of my feet are called Piezogenic Papules and I’ve had them since I was a child. I always thought they were normal, but apparently they’re not. They happen because of a herniation of fat through the dermis when any pressure (example standing weight) is placed on the feet. I also have these in my wrists. Then the boney lump which looks like another ankle is my accessory navicular bone. I was born with an extra bone in my right foot and it causes me a lot of pain, especially if I’ve walked for too long, it starts to ache, and shoes can rub on it too. Not everyone has this, but a lot of EDS sufferers do and some have them in both feet.
Now I’m typing this before the video as I wanted to recommend that you only watch it if you don’t mind joint dislocations and popping, purely because I’ve had a few people feel sick before when they’ve seen it, or cringe. It’s only 6 seconds long, but if it’s something you know you wont like, please don’t watch it as the last thing I want you to do is feel queasy after coming here. The video shows what happens to my hip joint if I lean on it. This causes me a lot of pain as with every step they pop a small amount, and then with weight, they pop out. They pop out as well if I twist my leg left or right, so I can end up limping around after walking for too long and this is why I can’t do hills and struggle with too many stairs. The extra strain on the socket causes a ligament to snap back and forth across the joint and it hurts like it’s being pinched for around 3 days after, making me limp as I can’t put any weight on it. I have to be really careful in avoiding that as it puts a huge dampener on my days, especially when I’m on holiday – it’s happened the last two times.
Hip Sublaxing & Dislocations
Now these are just the few main things you can see that’s wrong with my joints, but I suffer a lot of back pain due to everything being loose and slipping around, plus it’s slightly curved. I get extremely tired and fatigued as my muscles work overtime to try and keep me stable and stop the dislocations. And like I said above, all the internal symptoms that happen as well but aren’t visible, so what you’re seeing here is probably only about 10% of my issues. I hope this blog post has helped some of you, and if you’re suffering with any pain or your joints over extend like this, you might want to check out being tested for Hypermobility, and if you suffer with a lot of internal symptoms and stretchy skin as well as the joints (see my original post), it’s worth checking up on Ehlers Danlos Syndrome too. I’m looking forward to your comments! I’m not posting this blog post for any type of sympathy in any way though, it’s purely informative, so do let me know if you have any questions. Lorna xx.