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Ehlers-Danlos Support UK

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Aisha49 profile image

Hey just joined this page, I’m 24 years old and have EDS type 3.

My condition is getting worse day by day and really effecting my life I’m in full time work but hardly there as I’m struggling with aces and pains and unable to do my daily jobs let alone work. Because of my age I’m finding it hard to deal with feeling like I’m 84.

Just wondering how other people deal with this and living like this be nice to speak to people that understand.

Thankyou for readying x

7 Replies

Hi, I’m 22 and I also have EDS type 3. I feel your pain as I too feel like I’m at least 92.

The way I deal with it is to take it day by day, regulate my tasks in a way that fits my body that day. Like for instance, instead of standing while doing laundry, I sit down and do it.

It’s also very important to do some strength exercises every day (nothing extreme, just what ever feels right for your body that day) to keep your muscles strong so they can support your joints.

When I became bedridden and a lot less active resulted in decreased muscle mass and that ultimately resulted in way worse symptoms of EDS.

Good luck x

Aw bless ya Thankyou for replying, it’s so crap is it and it’s really hard for people to understand I feel like my employer thinks I’m just making it up as one day to the next we can be different things.

Yes that’s what I try to do but it’s so hard to be positive all the time.

I really take on board what you are saying.

Take care, thanks again x

Hey how are you are you ok I’m Matthew I’m 21 I’m new on here I’ve got Eds type 3 too

I hope you can get better treatment and outcome with being diagnosed so young! I was just diagnosed Eds this year I’m 44. Diagnosed with pots/dysautonomia a year an a half ago. Just living my life and trying to maintain a full time job, I own a hair salon and have a family as well. I find it hard to pace myself on a daily basis and I’m working on that now so that hopefully I can continue to work!

Hey, oh bless ya that must be hard to manage, but sounds like your doing an amazing job and trying to stay positive. I think that’s the key realysing what you can and can’t do and what’s to much without giving up. I’m in full time work to but really struggling and having quite a lot of Rome off work due to pain but my work aye sending on a physiologist (i think that’s what they called her) To see if work can do anything to help me.

Stay positive hun xx

Hi. I'm 18 and have EDS Type 3 also. I was diagnosed 2 years ago.

Tffr66 profile image
Tffr66 in reply to RoseBud99

I'm also 18 with EDS

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