Diagnosed with hEDS but I can’t stop thinking that it’s just in my head — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

Diagnosed with hEDS but I can’t stop thinking that it’s just in my head

jordan2002 Member Posts: 3 Listener
I was just diagnosed by my family doctor yesterday with hEDS and it just can’t be possible I’m fine I’m 17 and yeah I seem to get injured a lot but it’s not that bad I played football for three years and non stop weight lifting for those years and it seems like my body just gave out the pain seems to just get worse but I can’t stop thinking that it’s just in my head.


  • Rifi7
    Rifi7 Member Posts: 198 Pioneering
    Hi Jordon,
    Welcome to the room. You will be able to express and air your concerns about your condition with people who may have the same condition as you. Sometimes talking to people in the same position as you can put your mind at ease. Try not to worry at this stage. You’ve just been given the news and it’s probably been a bit of shock. Give yourself time to process this and once you have done this then you can start dealing with the situation. I know it’s been bad news but maybe it’s not as bad as it seems. Hang in there Jordon.
  • jordan2002
    jordan2002 Member Posts: 3 Listener
    Thank you rifi7
  • Rifi7
    Rifi7 Member Posts: 198 Pioneering
    No problem jordon
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @jordan2002   Pleased to meet you.

    Thank you for joining and sharing.

    Sorry to hear this.

    Understand right now your mind all over the place, we are here to offer compassion, empathy and sensitivity.

    I am one of the Team of Community Champions.  We guide, advise and support members.

    One of my friends on here I am going to tag right now.

    @chiarieds has the condition you have and I am sure the lady will offer a lot to help you.

    Kind and supportive.

    Please if I can help further please ask .

    Only too happy to be helping, listening and being supportive.

    Please take care.

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Perhaps you`ve not realised your body`s limits and pushed yourself more than you thought.

    Take a break, take stock and then re-think what your capabilities are.

    17 is very young to have to find your body letting you down.

    Take it slower yeh?
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @jordan2002 - It's good to meet you, Jordan. As my friend thespiceman says, I also have hEDS, altho I didn't get this diagnosis confirmed until I was 47. My son was diagnosed at the same time, aged 16. I started having problems when I was about 13; like yourself, I was active, I particularly loved ski-ing. I then became a physio, so I didn't let it stop me, whilst not knowing what the 'it' was at the time!
    I carried on exercising as I'd learnt to do as a physio student, & this is what still helps me the most.
    My son took up weight lifting (for his upper body) a few years ago & this has benefited him too, as well as a lot of walking. He had problems from being a teenager, until about 20 years old, when things seemed to improve. In fact, as I've read an awful lot about the condition, males seem to do better because of their stronger musculature. So any physical activity you can safely do is beneficial.
    I would suggest asking your GP to refer you for physiotherapy, as so much more is known about hypermobility now, & you could be shown how to safely exercise. My pain from hEDS, & I seem to be the worst affected in my family, is controlled by daily exercise. I also starting taking cannabidiol (CBD) about 17 months ago, & this relieved the lower back pain I'd been troubled with since I was a teenager. If you want to know more about CBD, please let me know. Rifi7 who was the first here to chat with you, also finds this helpful; we've compared notes! So it's this combination of exercise & CBD that has helped me.
    Keep in touch, & talk here any time. Please also say if you have any questions or if I can help in any way.

  • deb74
    deb74 Member Posts: 777 Pioneering
    Hi @jordon2020 like pollyanna1052 has said you have to learn to take things slowly and listen to your body, it takes time but you will get there. 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @jordan2002 and a very warm welcome to the community! How are you feeling this afternoon? Receiving a diagnosis can sometimes come as a shock. Please do use this space to share your thoughts. Have you spoken to anyone in your family about this?

    If there is anything we can do to help then please do let us know. :)

  • jordan2002
    jordan2002 Member Posts: 3 Listener
    edited January 2020
    I have not been taking it slow for the last few years. I’ve been weight lifting everyday for the past 3 years I was a power lifter deadlifting 375 and benching 225 and then suddenly my whole body seemed to fail with a multitude of injuries during football 
  • Rifi7
    Rifi7 Member Posts: 198 Pioneering
    Hi Jordon,
    It’s nice to see you’ve met and responded to people on the forum. It really is one of the best place to express yourself, ask advice or just come on for a chat. I’ve got to connect with such lovely people on here. You will find people with the same condition as you like Chiarieds. She really is good source of advice and support and maybe she can help you on journey to adjust with your condition. 


Complete our feedback form and tell us how we can make the community better.