I hate this invisible syndrome - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK
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I hate this invisible syndrome


I'm newly diagnosed trying to get my head around all this and I'm still convinced I have fibro which has similar symptoms. But family and friends talk to me and they think it will get better and go away. But when I tell them I've been suffering for as long as I can remember but my symptoms have got worse slowly over the years. They look me and I sware they think I'm making it up.

I'm finding some days when it's really bad I've contemplated using a stick and I have one in my bag and I'm scared to use it. What will people think or say.

I'm off sick and I walk with children and I know that I can't ever go back to my job and people just say well you need to find another job but question is what I'm so up and down. I am so scared about the future and don't know what to do. Don't fit the disability box but I don't fit the normal box I really hate this and I'm struggling with myself

13 Replies

Hi AliD47

It's important that you try and get your head around your diagnosis, up until your very recent diagnosis you had not had confirmation of EDS and sadly like great numbers of us have had to try and manage for years and years which was and is hard when you are unsure of what you have...

The advice I was given by my then rheumatologist was to slow down, take regular breaks every 20 minutes, try swimming and very gentle stretching. I was offered no pain relief, no anti inflammatory medication just nothing...

I went home and cried, I had built myself up over the months waiting to get this appointment thinking this was how I was going to get help and all I got was a diagnosis but no magic pills, no help and no way forward.

I decided to change a few things in my life and studied how I placed my joints, my knees, ankles, wrists and elbows are my biggest issues and continue to be so. I noticed when I stood up still, walked and ever attemped to run that I did all of this and flicked my knee caps backwards, it felt comfortable but I knew this was not right, so in an attempt to stop me getting continuous pain I decided to start to stand and walk with an ever so slight bend in my knees, it stopped me flicking them backwards, I continued this for almost a year and the improvements were great, I have started walking without the slight bend in my knees and if and when I go back to flicking my knees back I encounter that awful pain and discomfort behind my knees. I am conscious of how I place my knees when I exercise and try never to flick my knees back when stood or walking, I know it sounds strange but it's worked for me.

I also place a thin pillow under my knees when I lie on my back in bed, put my legs up on the settee/lounger etc. When I'm seated as a passenger in a car I place cushions behind my knees and take my shoes off and place a cushion under my feet. The thin pillow I use in bed I also use in between my knees and ankles when I turn on my side to sleep. I also use a long pillow from my chest to my feet as I used to end up creasing my chest in half when sleeping on my side and draping my arm right across and out of bed.

My akles have a huge tendency to drop too far downwards in particular when I'm in bed and lots when asleep making me feel like someone has been pushing my feet downwards and back away from my legs, like a ballet dancer, so I started to use kinesiology tape at 50% stretch, I place this half way along the top of my foot and over my ankle joint and up my leg, this works and stops my feet dropping forward and me trying to do ballet in my sleep, I still get pain but nowhere near as much.

My elbows, and wrists has taken a while longer to make adjustments, I have to try and remember to use my arms more in a similar way to my knees, in a slightly bent way, and learn to rotate my arms as I have a tendency to keep my arms straight and use my wrist to rotate. I used to garden quite a bit and then noticed when I used a wheel barrow I locked my elbows and wrists backward, like my knees flicking back, only this was with heavy loads of stuff... I noticed the same when I walked my two large dogs if I needed to pull them back, also carrying shopping bags with handles I would happily flick my elbows and wrists backward, all of these things I have had to change and incorporate a slight bend and stop over compensating. Sometimes I forget and it takes weeks to get rid of the pain.

I also have a series if gentle stretching exercises given to me by a chiropractor who I used to go to for soft tissue massage and done daily these also help. I was also told by a musculoskeletal podiatrist that I had poor proprioception and suggested I started to stand on one leg and then the other exercises and gradually build this up by doing things at the same time like cleaning teeth, washing up etc and also do with my eyes closed, well not while doing the washing up etc....

I still get inflammation pain in my joints but I have virtually stopped that over extended awful pain behind my knees, ankles, wrists and elbows.

By learning how to compensate in what you are doing with your joints you have to first be able to recognise what it is you are doing wrong, take a good look at yourself in a long mirror, look at your legs, how you stand, what you do with you knees, akles, hips, bum, chest, are you slouched into your waist, try standing tall wriggle yourself up out of your waist, place your chest upwards and slightly out and you bum slightly inwards, straighten your legs, but not until the the knees are flicked back, are your feet flat on the floor or can you see you have foot arches, if no arches start to strengthen these too, simple little exercises to strengthen these does help. Stand tall when you walk, think about what you are doing and don't over compensate your joints. When you sit sit tall, don't carry heavy weights which compromises your back and joints, become much more aware about what you do and more importantly how you do it and make slight adjustments.

Each of us have our own way of trying to manage ourselves and even more so when left to fend for yourselves with no medical help, medication and no way forward.

Good luck in your journey, think about yourself and how you have to adjust what you do to help yourself going forward.


aliD47 in reply to gillianTS

Thank you for your advise. Yes, I'm finding things out slowly but surely trying to make the best of my situation. I'm coping good while at home cos I can manage my time how I want. I tried to go back to work but I quickly realised I can't do all the dashing about required to work with under 4 year olds. Question is after years of doing one job where will I go now.

I doubt I will get disability as I can walk my dog etc even though it is painful.

gillianTS in reply to aliD47

Honestly you have to re-evaluate you life, your career and what you do going forward to make sure you look after your health and wellbeing. If this means changing career paths, as much as this is very hard it is what you would need to do, claiming benefits is a possible small financial solution but not a solution or at least a teeny way forward to helping your condition. Resting, sitting back and doing very little did more harm to me than good, I got stiffer, my bones and muscles hurt and I ended up hardly being able to walk and function, it was only with the help of my chiropractor, who I mentioned earlier had given me soft tissue massage, and who I learnt was also a EDS sufferer did I begin to realise inactivity is very detrimental to this condition and the more you increase your movements with gentle stretching and gentle exercise the better you manage going forwards. Within a month of following her instructions I gradually got back to being mobile and got a bit more of my life back.

I was also diagnosed with the rare condition called Behcet's in April 2017 which includes joint pain too but this is in a different way than over extending, its taken a while to get my head around these 2 conditions but that is all you can do, learn to try and understand what you have, try and live your life around the many issues these conditions throw at you and learn to try and accept this is a life long condition and what you do can and does affect how your body manges to go foward. Making little changes slowly will help but this takes time and patients and a lot of concentration.

aliD47 in reply to gillianTS

Yes, I'm learning all that. I think I'm wanting to run before I can walk when really I should be celebrating how far I've come and that's without any support. I've managed to get myself from not being able to walk my dog to now getting out and about with him. Yes I have had days and that's ok. I will continue to stay off sick till I figger it all out and find out what career path I can consider. I'm the meantime I'm concentrating on me.

I went through what you're going thru nineteen years ago, when EDS was even less known about and I truly do understand how you feel. It's an invisible illness but there are ways of getting your family to understand.

You have already had some great advice with regards to living with and coping with EDS, so instead I have copied a link to something I think you should print off and give to your family to read.

All the EDS info from this symposium I've copied to you below, is written by top EDS specialists from all over the world, including Professor Rodney Grahame who diagnosed me back in 2000. Prof Grahame used to be the top EDS specialist here in the UK and is also the most wonderful man.

Even tho he has long since retired, he still works tirelessly in order to help educate the medical profession and our non believing families about EDS.

The info from this symposium has specialists for every area of the body that EDS hypermobile type affects. I only came across this info myself fairly recently and some of the info that's in it, I'd never even heard about, EDS really can affect just about everywhere in the body.

It does explain that there are many things that can help us to cope, like physiotherapy for example. I think if your family read this, then they will have no choice but to believe that EDS is a very real, very painful and very debilitating condition to live with.


How I try to make my family understand, is to ask them if they have ever had the flu? I'm talking about the proper full on flu, where every bone and muscle in your body hurts and throbs and you feel so horrendous and have no energy to do anything, that you really just want to stay in bed?

When they answer "yes", as most people have had the flu at some point in their lives, I say "well that's how I feel pretty much every day of my life!"

That usually makes them realise what living with EDS is like!! 😉

Here is another way to help them understand :

If you have any family members who have had an injury, or a bad back for example, then they probably know about having to cope with pain. Explain to them that you have to cope with pain in pretty much every joint and muscle in your body.

Here is how I explain why my EDS causes me to be in pain and exhausted, when only trying to carry out very basic tasks :

The way I explain it is that my collagen has no strength because with EDS you are missing the genes that gives collagen its strength, therefore everything that is made up of collagen in your body is very weak (which is pretty much everything basically) .

Your ligaments are too weak to support your joints, therefore your muscles try to work extra hard in order to try support your joints.

The trouble is that your muscles are equally weak and therefore in their struggle to support your joints, well your entire skeletal system really, they are constantly being overworked and this doesn't just cause you to be pain in your joints and muscles, it also causes your body to be exhausted from carrying out very little activity.

It's like a normal healthy person spending the entire day in the gym working out and then wondering why they are in pain and exhausted every day!

We do also get Fibromyalgia or Fibromyalgia type pain with EDS because the nerves in our body sit within collagen, so with EDS we can hurt and be tender just about anywhere. There are many ways to cope with EDS but most importantly, be kind to yourself! You can still have a great life but you may need to change the goalposts to fit what you can cope with. A walking stick will probably just cause you to get arm ache as well as leg pain. I use a mobility rollater, it has two bags for putting things in, one for my handbag, one for the shopping. It also has a seat so I can sit down and rest when I need to. I know you are young and probably think, I don't want to walk around with an old persons mobility aid, that was my thought nearly 20 years ago but I soon got over it when I realised that my rollater gave me the ability to to get out and about and shop again etc. I'm planning on getting a mobility scooter next, so I can start going even further when out and about.

EDS is a disability and there is financial support out there like ESA and PIP, if you are finding that you can't cope now that you're unable to work. Do not be ashamed to ask for it either because that's what it's there for. I would advise that you get help filling in the forms, as they can be a bit daunting. The Citizens Advice Service put me in touch with a local charity who did the filling in of the forms for me.

I hope the above is helpful and will also helps you to get your non believing family to understand. If not then know that you have another family in other EDS sufferers, we understand what you have to cope with and we "will" believe you and support you! 😁 👍Claire xx

aliD47 in reply to leakeadea

Thank you for your reply, Claire I appreciate your kind advise. I'm beginning to realise I need to make small changes and build from there.

leakeadea in reply to aliD47

The biggest stumbling block when first diagnosed with an incurable condition is "acceptance".

I fought very hard against my EDS diagnosis for quite some time. I was a professional singer and my career let me travel all over the world. I loved what I did for a living and so didn't want to make any changes to my lifestyle.

In the end my body made the changes for me. I'd insisted on pushing myself to keep working and to keep performing and in doing so I pushed myself to the point of collapse!

I often wonder now if by doing that, did I actually accelerate the progress of my EDS?

If you can accept whats wrong with your body and make adjustments now, then you have a far better chance of keeping your EDS managed. That way you are in control of your EDS, rather than your EDS controlling your life!

aliD47 in reply to leakeadea

Great advice, I'm planning on retraining for something like nail technician to give me focus. A new challenge

leakeadea in reply to aliD47

Good idea. It's really important to stay positive when you live with a chronic health condition, you may not be able to do some of the things you used to do but you learn to appreciate other things in life instead.

aliD47 in reply to leakeadea

It's hard when you've always been a go-getter type person always on the go, to having to slow right down. I'm gonna make some enquires this week I think.

leakeadea in reply to aliD47

It is yes but when you do, you find so much pleasure in the little things, things that you would have missed before when rushing through your life.

The one thing that keeps me sane nowadays is "nature".

Where I live now I have the most beautiful views from my windows and a small but beautiful garden that is filled with wildlife. I have bird boxes and feeders and have every type of bird comes to my garden, from robins and blackbirds, to long tailed tits and nightingales. I also have 20 wild pheasants who come to be fed every day, some of which feed from my hand, so they're not so wild anymore!

I'm unable to get out much nowadays, due to other health reasons, not just my EDS but I have surrounded with such beautiful things, that even though I can't get out to find enjoyment, I'm surrounded by things I love every day right where I am.

Find what you love most in life and bring it to you. 👍😁

I really feel for what you’re going through xx communication is the key, most people want a quick fix for stuff, and get confused to realise that medical science can’t cure everything, so I felt a lot of the similar reactions I got off friends were just projections over their own fears and tried not to let it effect me, but felt so frustrating and made me feel like I wasn’t being listened to. I sent articles about EDS to friends and family, and opened up dialogue about it. Also explained to spoon system to people so I could rate my pain/exhaustion on a scale we both understood. It takes a lot of time to come to terms with something like this, just try to focus on getting to know your new normal xxx

Hi aliD


I’m sooo sorry you’re suffering so much.

I completely understand what you’re saying because I’ve been through this too.

There are many hidden conditions that are masked by a normal outside appearance. There are countless people walking all around us that have terminal cancer and no one can tell it.

No one has the right to judge another person about their health especially. You can’t please everyone but you can please yourself. You are the main focus here and giving yourself the best life possible is the most important issue.

It doesn’t matter what anyone else thinks about anything you do that makes your life easier and better. If you need to use a cane or anything else that will improve the quality of your life the you SHOULD use it. Who cares what anyone else thinks. If they don’t like it too bad!!!

I suffered for years until I realized that whatever those who criticize want to do they do it so why shouldn’t I have the same rights???

NEVER let anyone else keep you from doing what is best for you regardless of what that is.

Best wishes for taking better care of you for being loving to yourself for being your best friend.


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