Hypermobile Ehlers Danlos Syndrome – What It Looks Like

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.

Bendy Fingers

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.

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55 Comments

  1. May 8, 2018 / 2:46 pm

    Lorna, thank you for sharing this, it’s very personal stuff. The video didn’t gross me out at all. You are dealing with all of this the way I do with my back and other issues – head on. Big hug for you! 💕😌

    • May 9, 2018 / 10:32 pm

      Thanks, John! I am always trying to help spread awareness to help others and tackling things head on and living with it is the only way to do it I think. Good to know you’re the same 🙂

  2. May 8, 2018 / 5:15 pm

    First and foremost Lorna, thank you for putting yourself out there. This isn’t easy but I know that this information will help others. Your post have been truly informative and your photos really illustrates what you are talking about and what you are going through. Sending you a lot of love and hugs! 🤗❤️🤗❤️🤗❤️

    Maureen | http://www.littlemisscasual.com

    • May 9, 2018 / 10:33 pm

      Thanks, Maureen! I genuinely hope it does help others and helps spread some awareness for it. There might be some people suffering out there that don’t know what they have, and if this post can help them, I’ve done my job! Love and hugs to you too!

    • May 9, 2018 / 10:33 pm

      Well now you do! Ha ha!

  3. Steven
    May 9, 2018 / 6:46 pm

    Your post… You are definitely a very brave person (apart from being a very beautiful woman), discussing openly something so personal: I wouldn’t because I don’t have the guts. I had and still have an issue when I talk: I stutter (may be severe) and this makes me feel uneasy and uncomfortable, not only when I was a child (and almost everybody used to make fun of me) but even now when I have business conversations: it has greatly influenced my life. I wouldn’t share that with anyone in person and discuss it freely.
    This is why I admire you and think that God has blessed you with bravery and fortitude that match only your beauty and charisma. About the mockers: I can’t imagine an open-minded person like you will pay them any attention. Just ignore the poor souls haha

    Be blessed and enjoy life, you deserve it. Keep doing what brings you joy and happiness. A very, very openly minded and charismatic person, you have my full admirations and that is not an easy achievement.

    By the way do you already have plans for your 30th Birthday concerning your posts, I mean a special post of some kind?

    Excuse my English if some words do not sound natural or typical. One question, why is every word underlined in red haha ???

    • May 9, 2018 / 10:37 pm

      Thank you so much! That’s really kind of you to say such nice things 🙂 That’s a shame your still shy with your stutter, I can understand it as a lot of people are ignorant in this life and don’t have an open mind at all, but a stutter is part of you and you can’t help it, so don’t worry too much about the other people if you can. What matters is yourself.

      I don’t have any birthday posts planned actually. I’m not a party person or anything, I prefer to keep things simple, and the things I’m doing are day trips so I planned on enjoying them without it being work related, but what sort of posts did you mean? Did you have anything in mind?

      And the red lines would be your browser, it’s doing a spell check and telling you the grammar or words aren’t right lol. Sometimes if you’ve missed a comma or full stop or something, it will underline the whole thing in red to tell you off, ha ha 🙂

      • Steven
        May 12, 2018 / 5:00 am

        Hello Lorna! About your birthday: a set of photos of you holding a king-sized (sorry, you are in UK: queen-sized ha ha) birthday cake with 30 candles above your head would be nice but too trivial and cliché for an original thinker like you. Maybe you can post a list with say 10 or, to be more symbolic and original, 30 funniest/most awkward/interesting/annoying (in general: extraordinary in some way) moments in your life or while managing the raindrops site. Or 30 things you want to achieve/improve from now on…Basically your top 30 things either in the past or for the future. Or for the present. Worst-case scenario would be: top 30 persons you would like to kick out from your site ha ha. For example someone that spams you with lots of sentences (ha ha). At the next anniversary you can make a comparison or just laugh at what you were thinking 10 years ago. Sorry, didn’t intend to make it that long, Have a nice day!

        • May 13, 2018 / 4:51 pm

          Believe it or not (I know that’s rare) I’m actually really happy with who I am and what I’m doing, so I actually don’t have a bucket list type of thing. There’s things like going to Disneyland Paris that I want to do at some point, but my main one is working on my health to be well enough to manage something big like that. I will give it some thought. It’s a long way off in August so I have about 2 and a half months to thing. A cake isn’t something I will probably have as I can’t have gluten, so unless I get a gluten free chocolate one which is home made, I probably wont have one I don’t think. I’m not really a cake person, although I like brownies! I will definitely do something important though for a blog post – it is a big milestone after all!

    • May 9, 2018 / 10:33 pm

      I hope it’s helped in some way!

  4. sabrina
    May 9, 2018 / 9:05 pm

    OMG
    really, I do not know how to tell you

    • May 9, 2018 / 10:34 pm

      Don’t worry 🙂 Mentally I am ok 🙂

      • sabrina
        May 13, 2018 / 4:04 pm

        xoxoxo

  5. May 9, 2018 / 10:54 pm

    Thank you for sharing this. I hadn’t heard of Hypermobile Ehlers Danlos Syndrome before you blogged about it.

    • May 9, 2018 / 11:01 pm

      You’re welcome!

  6. May 10, 2018 / 12:05 am

    Wow this is new to me and you’ve explained your symptoms really well. I can’t imagine the pain you feel regularly. But you are strong to share your story. I feel sharing is a great way to take control of things that often feel out of your control.

    xx Yasmin
    http://banglesandbungalows.com

    • May 10, 2018 / 12:16 am

      Hopefully it’s helped raise awareness! It’s good you now know about it 🙂 I am hoping sharing it creates a great journey and a huge source of knowledge and support for other people 🙂 Thank you!

  7. May 10, 2018 / 2:15 am

    I could read a stack of scientific papers and I wouldn’t have understood half as much. You’ve done a splendid thing here, and I expect many of your fellow sufferers will appreciate it.

    • May 10, 2018 / 11:29 am

      Thanks, Charles! I’m glad I’ve helped!

  8. Mile High Dreamers
    May 10, 2018 / 2:42 am

    Thank you so much for sharing this! I can’t imagine what you have to deal with and it’s so eye opening to remember that people can be dealing with SO MUCH that we don’t see. A little extra compassion goes a long way. Raising awareness of things like this that people don’t necessarily see right away is so helpful. You’re amazing!

    Susie | http://milehighdreamers.com

    • May 10, 2018 / 11:29 am

      I’m really glad it’s been helpful! I think it is so important to raise as much awareness as possible to people who wouldn’t have the opportunity to know about it. Hopefully it can only help for the future!

  9. frejaahr
    May 10, 2018 / 10:16 am

    I think that it is so great that you are creating awareness about this disease. I had never heard about it before you started blogging about it and now I feel so much more educated. Thank you!

    http://whatmakesmesmileblog.com/

    • May 10, 2018 / 11:30 am

      I’m really glad!

  10. May 10, 2018 / 5:56 pm

    Every day is a school day. I had no idea about all the symptoms. Funny enough my both elbows are the same but I never paid attention to this as it doesn’t give me any pain or discomfort! Thank you for sharing such a great post and being so courageous! ❤️🌸😘

    http://www.elegantduchess.com

    • May 11, 2018 / 11:02 am

      Oh you’re lucky you don’t have any pain elsewhere. My elbows don’t seem to cause me much pain either, it’s all my other joints that do the hurting xx.

  11. May 11, 2018 / 1:38 am

    I think it is great that you are sharing this like I said it helps to let the world and the world of blogging in particular know that perfection is not the norm. You are beautiful and I don’t think any of this looks that bad but much more of a struggle to live with it though. Also glad you have blogging as an outlet. And with ingrown hairs I get them it runs in my family. I use a combination of a scrub and an alphhydroxy lotion which helps. But with your condition you may want to check with your doctor first. But it did help with the ingrown hairs. Worth a try if you can tolerate it.

    Allie of ALLIENYC
    http://www.allienyc.com

    • May 11, 2018 / 11:03 am

      Oh thank you, Allie! I will definitely consult with him about that and see if it’s safe for my skin, that’s really helpful!

  12. jane
    May 11, 2018 / 8:17 am

    Ohhhmmmy God, i never knew you had a disease like that dear
    I know people dont know much about this
    I feel more knowledgeable of such disease

    Much Love,
    Jane | The Bandwagon Chic

    • May 11, 2018 / 11:03 am

      Happy to spread awareness!

  13. Gabrielle
    May 11, 2018 / 4:56 pm

    You’re so brave Lorna, I can imagine how close to your heart this topic must be to write about. This is a completely new condition for me to have heard of and so I really appreciate you educating your readers on it; I’m so sorry you have to deal with this, particularly the pain! Make sure to treat yourself with plenty of kindness 🙂

    Gabrielle | A Glass Of Ice x

    • May 11, 2018 / 7:32 pm

      I’m really glad I’ve been able to educate you on it. Thank you so much for your support 🙂

  14. May 11, 2018 / 7:08 pm

    Your blog is gonna be helpful for many like me for whom this syndrome is completely new. You’ve explained things really well dear ☺
    God bless u honey ❤

    • May 11, 2018 / 7:33 pm

      That’s what I’m hoping, I am hopeful it will help!

  15. May 14, 2018 / 11:02 am

    This post has certainly helped me to better understand some of your symptoms and some of the practical issues that you face. This combination of photos and clear explanations has worked very well and I’m glad that you’ve done this. I hope that you are glad that you’ve written this entry too. I have no doubt that it is going to benefit a lot of people. Although you are too modest and selfless a person to probably think of yourself as a role model you are, nevertheless, in the public eye and this is sure to inspire other people who have the same, or a similar, condition to you. 🙂

    I watched the video too, of course, as I have no problem with that – indeed it was quite an instructive 5 or 6 seconds. If a picture speaks a thousand words then a video speaks even more doesn’t it? 🙂

    What strikes me most about this entry and your previous one on the topic is really the huge range of symptoms that you are faced with each and every day – which must make planning ahead quite tricky? Even that it sometimes dictates what you feel comfortable wearing or being seen to be wearing – that must bring extra complications to your thought processes when choosing outfits though you always look terrific in the items that you’ve described as being difficult… the skirts, shorts etc.

    I’m really pleased to see what a positive reaction you’ve had from everyone to this post. 🙂 Nice to see so many terrific reactions.

    • May 14, 2018 / 11:36 am

      I’m so glad you appreciated it and found it helpful/useful, Steven. I’m really trying to raise awareness for the condition, starting by showing people what it is and a lot about it, then following on with tips and things that I have found really helpful over my life and what I can’t be without, in order to manage symptoms. My goal is to try and let others know they’re not alone or to share everything I can to help. I’ve had a few private messages already asking about the supplements I take, so I’m glad it’s gone down well. Like you said, it’s been lovely to have such a positive and supportive reaction from everyone. I think it would, however, be incredibly silly of someone to sling abuse at me on a post like this as it just shows ignorance more than anything, making them look silly, so I am pleased it’s put people off being nasty!

      You’re right about planning my day or events/trips being quite tricky, as well as outfits. It’s not only the lovely British weather I have to contend with, but what my body is doing at the same time. Luckily, Photoshop is a dream for erasing bruises, marks, anything going on on my skin etc. If Adam and I are going on holiday though, it has to try and be planned around avoiding my period (it puts me in bed for the first 2 days), however that’s tricky because it’s so irregular. That’s one of the biggest problems for doing things and planning. It can also be hard when I’m having a ‘bad’ day and need to do photo shoots as well. I mostly just try and power through it, sit down between shots, then just deal with the consequences in the evening, but sometimes it’s just not worth it to suffer so much for some photos. It’s a tricky situation. When you love what you do though, you make it work 🙂

      • May 14, 2018 / 11:50 am

        I imagine as well as the bad days you also have to contend with good days that turn worse? If some of your worse symptoms manifest during a day rather than right from the start of a day, I mean?

        I hadn’t really considered the Photoshop aspect actually… yes, that’s certainly a useful tool for if you need to adjust anything.

        Well, we can certainly all see that you love doing your job and that you’ve made it work. 😀

        You’re right of course, that anyone trying to post something nasty on this thread is going to look really silly… but there are just enough silly people out there. Indeed silly people are on resource that the world will never run out of. 😉 LOL

        • May 14, 2018 / 11:58 am

          Yep, you’re right there too. Sometimes I can wake up really bad – migraine, can barely open my eyes from exhaustion, bloated stomach with pain, feeling dizzy or sick etc, which isn’t good for the day, then other days I wake up perfectly fine, but come the afternoon or evening, everything can go downhill just as quick.

          With the autonomic system being faulty, it can literally cause trouble whenever it wants. I know I have triggers though, so if I’m exposed to chemical smells, eat gluten, have walked too much, been too cold or in the damp, been too stressed out or worried, not drank enough water (list goes on), I will set things off, but even if I’ve done everything perfectly, I get relapses and have no idea why it happens, which used to be frustrating as I’d spend ages trying to figure out what I had done, but now I know it’s not my fault, I feel much more accepting and at ease with it actually.

          If it’s not that part that’s playing up, it’s usually my joints. Things can just pop in my back and cause me problems for days, my hips can just decide to aggravate, I even dislocate in my sleep which I can wake up to pain from. I’ve slept with my shoulder popped out of the socket quite a few times and in the morning it’s aching and so sore. Just a couple of days ago, I woke up with pain in my toe, apparently I’d managed to dislocate my big toe in my sleep and it was so sore by morning. All is well now though, just make sure it goes back in, but it was purple and dented for hours. Confused face emoji would be useful right about now lol!

          • May 14, 2018 / 12:05 pm

            Gosh… so many triggers! Some of them not even avoidable ones by the sound of it… and certainly anything that happens in your sleep can’t really be avoided either.

            I’m glad that you now know that the triggers are not your fault anyway so at least you’re not mentally beating yourself up about stuff. 🙂

            • May 14, 2018 / 12:14 pm

              Yep, the chemical smells is the tricky one. People put on too much perfume when I’m out, or someone decides to paint their nails on the train etc, I have to try and leave immediately. I get so annoyed at people who drench themselves in Lynx body spray, that’s one of the worst triggers for me. You can smell them a mile off. I’m also having issues with being too tense and causing more cystitis. I’m often tense to keep my joints stable, but it’s aggravating other muscles which are not designed to be tense. I’m ok though, everyday is learning more and more and I feel more confident in the condition and how to manage it as time goes on 🙂 I really appreciate all your support and interest as well, it means a lot to me xx.

              • May 14, 2018 / 12:29 pm

                Oh dear… I use Lynx myself… Though I don’t think I drench myself I maybe ought to be aware that it can affect some people then. :O Or is it all brands of body spray really?

                You’re very welcome, Lorna. It’s good to learn and understand more about what you are dealing with. xx

                • May 14, 2018 / 12:44 pm

                  It’s pretty much all perfume and sprays that affect me, but definitely the worst is being drenched in it so it stinks up the surrounding area where I might be, lol. No offense was intended to you, I’m sure you’re not saturating yourself, but I am not sure how common it is to have a chemical sensitivity? Probably quite rare I imagine!

                  • May 14, 2018 / 3:35 pm

                    No offence taken of course. 😀 LOL Yes, I think I’d make myself feel a bit queasy if I used too much anyway. 😉

                    • May 14, 2018 / 3:57 pm

                      It’s a wonder some of the younger lads don’t pass out from their own smell, ha ha.

  16. May 15, 2018 / 12:09 am

    Lorna, you are amazing for sharing this. I admire your courage to open this up to the world. You may have heard this a lot, but you’re indeed such a huge inspiration, especially to others out there with the same condition. They will find your blog, read your post about this, and they will feel empowered knowing they’re not alone in this fight. Wishing you all the best! Hugs and kisses from NY!

    Jessica | notjessfashion.com

    • May 15, 2018 / 12:10 am

      Thank you so much, Jess. I really appreciate it! That means a lot coming from you xx.

Thanks for your comments =) I read & reply every one =)