• 7 months ago

    My boyfriend has EDS, please help

    Hi, I just need some advice and wandered if anyone could help. My boyfriend has Ethlos Danlos Sydrome (EDS) where he is in chronic pain doing the smallest things like going to the shop. He hasn’t worked for the last year while he gets used to his new life but his parents are finically very well off and have offered to support him by giving him a wage each year that is greater then what he would get if he worked.

    My issue is that when he told the doctors that he felt it was getting much worse over time they said that it could be getting worse or that it could be that he used to be a lot more active and now that he’s stopped his body is used to less.

    So my question is if he were to go back to work would his body get used to it? Or is he just signing up to a world of pain by even thinking of going back to work.

    Ps, this is a one time offer as we would have to move for his work so once we’ve moved it would be very difficult to change are mind.


  • 7 months ago

    RE: My boyfriend has EDS, please help

    I have Eds too, the pain gets worse and worse and nothing seams to make it better (opioids have no effect). I have had multiple experimental pain treatments that failed. I have been searching for something that works for over 15 years. My pain wakes me up in the middle of the night and I typically only sleep for 30 min at a time.

    That being said I work a full time service tech job. I personally feel like a full time job does cause some extra pain (from exertion) but it also distracts a bit too. If I didn’t work I probably would loose my mind and get lost in the pain.
      • 7 months ago
        Thank you for your reply!

        Is there no hope then? Because it took us ages to get a diagnosis and when we did it was basically the doctor reading off google. We are in England and were told the closest doctor that knows anything about it is 3 hours away. Have you not found anything that helps? By opioids do you mean weed?

        I’m not overly concerned about his mental state as he’s very self motivated so he’s talking about going back to Uni/being self employed etc (he also works in IT so can code from home)

        I’m more worried that on the rare occasions we go out that it will be 10x more painful as he won’t be used to it and that we’ll end up as hermits
      • 7 months ago
        By opioids I mean opioid pain reliever; Vicodin, morphine, delauded, methadone, Percocet, and such. I have not tried “weed”, for many reasons. They Include personal beliefs, but also it is supposed to actually make Eds pain worse because it makes you not care about the pain (does not relieve, just makes you not care) and end up hurting your self more.
        I have had various injections of different things (cortisone, opioids, venoms) and nothing worked. I have also had a spinal cord stimulator inplanted with made things worse too.

        Basically I have yet to find anything that works. That being said, never give up hope. You are doing one thing right thou, give your bf all the support you can, having someone care about you is one of the best things you can do for someone in pain.
  • 7 months ago

    RE: My boyfriend has EDS, please help

    Disuse can and will make pain worse. Inactivity contributes and causes further deterioration, and the persons ability to tolerate activity and pain lessen markedly.
    Millions with EDS lead functional, successful lives, and it might be beneficial to have his doctors really evaluate which is the cause, worsening of his condition and is it bad enough to require him not working, or is the lack of excercise, activity, accomplishment leading to a perceived increase of pain and decrease of tolerating activity.
    How does he do in leisure activity , things he finds interesting, engaging?
    If his increased pain and inability to participate is not effecting activities he finds interesting, then you have a good idea what is causing his perceived decreased functional ability.