Looking Helpful for helpful information on best treatment for Ehlers danlod

[Daisy50]

Hi I'm new here. What does everybody find helpful with there Ehlers danlos. Ect medication or anything else. The pain is driving me mad and have no help

[aliD47]

Well I'm newly diagnosed and was told gentle exercise like swimming or gentle on an exercise bike. Eating healthy. I'm seeing my gp about taking vitamin d. I've been. Referred for physio. Told to basically keep moving best I can and I take medication for balance and dizziness and told to take paracetamol and they will give strong medication bug only if absolutely necessary. I've also been referred for cognitive behavioural therapy. Told to keep going with rest periods basically that's it. I know others on here will have strong medication if they are struggling or symptoms got worse and they are now immobile but I was told not to go there it's a last resort when there's nothjng left to try.

I've come to the conclusion that it's nest to keep fighting it and don't give in until you've reached the end.

Hope some of this helps.

[Daisy50 in reply to aliD47]

Thank you very helpfull.

[aliD47 in reply to Daisy50]

It's really hard isn't it. I've also found keeping my mind occupied really helps. So a hobbie is a great idea, I make cards and believe it or not I'm trying to write a children's book. All things that keep my mind away from pain. I have found just 10 mins on the exercise bike slowly and gentle does help a little in terms of the numbness I get in my legs.

I'm learning new things all the time. Keep researching and talking on here. It helps I've found some great advise on here. Good luck, hope you find a way to cope.

[Saassii]

Heat. Gentle regular exercise. Some assistive devices are useful, like splints and braces. Maybe a body pillow at night? I'm hunting for one of those currently! I used one while pregnant and it was fabulous, now EDS pain has presented recent issues I'm going to go back to trying that. Gentle stretching. Physio is excellent. Massage is amazing. Infrared saunas are wonderful when possible. That's more of a general all round health concept.

What else helps? A good sense of humor? Lol. Crack jokes not just your joints! 😂

[crashdoll]

I was thinking about this today. I am in a lot of pain but don’t want to take stronger painkillers. In the past, I’ve used a TENS machine which is particularly helpful for muscle pain and tightness. Keeping moving is so important for unstable joints, even if it just means walking around the home or garden or even making sure you get up and stand regularly. Good shoes with orthotics keep my ankles stable which helps the pain. I struggle with shoes and prefer boots as my ankles are the most unstable part of my body.