Ehlers-Danlos type 3

[Charlottewileyy]

Hello everyone, I have recently been diagnosed with Ehlers-Danlos syndrome type 3, I have been waiting for a diagnosis for 8 years now and been misdiagnosed many times, finally this month I got my diagnosis but have been told because it’s took along time it’s affected my heart but it was unknown. I want to be able to connect with people on here who have EDS3 and what treatments they have done as I’m currently on tramadol and am 20 years old so worried about using strong medications at this age.

Charlotte x

[cyberbarn]

Hi Charlotte,

8 years is a long time to wait for a diagnosis, but sadly this is very common in EDS. And it is worse for women than men too.

But you have it now! Congratulations! I am 60 and didn't know until my son was diagnosed when he was 13 that I had EDS. My son was lucky, the diagnosis was done and dusted within a year. He is 25 now, and is actually worse off than I am; we aren't sure why, but that's the genetic cards he was dealt with.

Just a note about the diagnostic label, in 2017 an international consortium reviewed all the different types of EDS and renamed some of them, so what was EDS type three, which had also been called EDS hypermobile type, was renamed hypermobile EDS, often shortened to hEDS. So you may want to use that term when you are looking for information.

So, what to do? As you know by now there is no cure, but the main treatment that can make a difference is physio. A good physio that knows about hypermobility is worth their weight in gold! It is important to keep the muscles strong in order to support the joints, but not so strong that they can pull a joint out of place, so they also have to be balanced.

Keeping active is important, but definitely don't over do it. Swimming is good, and gentle movements, go for walks rather than marathons!

And listen to your body. If something isn't working for you, find something else.

Another health care professional that might help is a podiatrist. In fact podiatrists often spot hypermobility before anyone else does. They can make sure that you have the right insoles and shoes to make sure that your feet are comfortable and supporting the rest of you body.

Pain is a pain, and sadly it is something we have to put up with. People with EDS have two different types of pain, they can have acute pain where the tendons get tiny little tears in them which causes inflammation and that causes pain, but they can also get chronic pain, that is pain where your brain gets mixed up and thinks there is more pain than there actually is, sort of turning the volume up to 11 when it is really only 5.

There is a website you might like to explore call The Pain Took Kit that gives some alternatives to drugs to bring that pain under control. Have a good look around the site, there are several free resources:

paintoolkit.org/resources

I can't take codeine or any of the opioids, my stomach says no! So I just take paracetamol. The trick with that is to take it all the time, either three or four doses a day. The pain relief builds up, and is better than just taking the paracetamol occasionally when the pain gets too much.

Good luck on your journey, hopefully now that you know what is going on things will settled down into the new 'normal' for you.

[Charlottewileyy in reply to cyberbarn]

Thank you so much, currently I think I’m just finding it hard managing everything, managing work with pain and being so tired I seem to jusy work then nothing else can be done. I feel like I’m 20 and can’t do anything because I’m in so much pain and discomfort nothing is enjoyable. I think my goal is to work on my mindset regarding the situation because I get myself down more.

[DISC]

Hi, I am 49 and have EDS/hypermobile. It took a long time to get a diagnosis too. I also have severe Gastroparesis, osteoporosis throughout my body, fibromyalgia and am very low weight (5 stone) as a result, so I am in pain 24/7. I have tried physio, chiropractor/ homeopathy and acupuncture. I even tried Botox injections which helped, but are not allowed on the NHS now except for migraines. I find heat patches help greatly, as too seeing a good Occupational therapist for aids and supports. I managed to find the ideal site for neck braces (Physio Room .com) . I have the Adam collar. I also use Repose pillows and mattress posture supports which help with pressure point pain. Keeping active to work those muscles is good. I take paracetamol, ibuprofen, Oramorph, Biofreeze, and Butrans patches. Any questions please just ask away... good luck x

[Aurora20]

Hi I am 28 and I was diagnosed when I was about 22. Unfortunately there is no real treatment for hEDS other than physio! My only advice would be to learn how to adapt your life, knowing when to rest, listening to your body all of these things do make it a little easier. Don’t overdo things, I can understand being 20 you want to go out, socialise, not miss out on things but as long as your friends understand that maybe one day you might not be well enough to go out and that’s alright, remember this is your life now. I was angry at first but then I thought it could be so much worse we just have to fit our life around this condition! x