Ehlers Danlos Symdrome type III (hypermobility)

McBreadle

I have diagnosed with hEDS since January this year and it's not gotten any easier!! I struggle with sleep almost every night and struggle to function to do simple tasks, and it's getting worse!! 

If anyone has any help or advice to cope, it would be awesome!! 

Many thanks!! Xx

McBreadle

Anyone else have this?? Its frustrating as none of my friends know what it is and never heard of it so I have nobody close!! My mum and brother seem to treat me like a hypochondriac and my dad is no longer around, as far as I know!! I suspect my dad had it from what I remember as a teenager and young adult!! But I've never been close to him or his side of the family!! The only member of my family who has seen everything I go through is one of my cousins and he helps where he can!! My BF is the same and helps where he can but doesn't truly understand the pain!! My 15 year old daughter may also have it as well as she is showing signs like me!! I'm just glad that i understand chronic pain and illness so i can help her as i never got that as a child and was treated like a hypochondriac all of the time!! Xx

chiarieds

Hi @McBreadle - I was in in touch a couple of days ago when you joined, saying that I also have the hypermobile type of Ehlers-Danlos Syndrome, formerly called type 111. Have you looked at the EDS Support group's website that I mentioned? https://www.ehlers-danlos.org/

I do understand your concerns, as I passed EDS onto my children, & 3 grandchildren. One of the good things to know is, that even in the same family, there's variable expression, meaning that your daughter may not be as badly affected as you. This has proven to be the case with my family so far.

For me growing up it was different; my GPs didn't have a clue, as not much was known about EDS then, & I tried to hide the pain I had, especially when I wanted to become a physio. In the long term that helped me, as I was able to research the medical literature years later when my eldest daughter wanted to know if she might have an affected child due to my physio background.

With my eldest daughter as a teen, it was well if you're not using your wrist support, can I borrow it? on many occasions. But she's OK now, tho her children are way more hypermobile than I ever was!

I'm sorry some of those closest to you don't understand your pain; this is hard to do unless you've experienced it. Perhaps getting your BF to look at the EDS Support group's website might help, & perhaps your mum & brother too.

Please let me know if I can help in any way. I do understand about EDS, tho we're all different. I think I mentioned that the neurological pain I have from Chiari 1 Malformation is worse than my EDS joint pain.

Anyway, here we all have different problems, but you'll find we all support each other regardless of any diagnosis.

EmmaB

I'm a counsellor and many people have issues with sleep but there are a lot of things you can do to improve it eg:

- Create a nice, relaxing bedroom environment eg clean bedding, tidy room, whatever makes you happy

- Have a bedtime routine eg locking doors, cleaning teeth, reading for a while [as long as the book isn't too stimulating!]

- No caffeine after midday [it hangs around for HOURS]

- Don't go to bed too hungry or too full

- No screens in the bedroom [or if you can't possibly manage without it then make sure the screen is orange rather than blue light]

- Park your worries - write them down - then you can look at them the next day [to decide which you can do something about and which you need to realise you can't control]

- Park your 'things to do the next day' - write a To Do List for the next day

- Have a pad and paper by the bed for parking worries or things to do that cause you to wake up in the night

- Do some form of relaxation before sleep eg stretches, a body scan, mindful breathing, see:  www.franticworld.com 

- If you have a bad dream, work out a different ie happy ending

- Only go to bed when you are sleepy

- If you are not asleep in 20 minutes get up, go to another room if you can and do something until you feel sleepy - if you lie in bed awake or doing other stuff you will start to break the connection of bed=sleep, which is a disaster...

- Beds are for 2 things - sex and sleep!

I really like Dr Chatterjee's approach to health and if you want something to listen to you might find this interesting:

https://drchatterjee.com/why-sleep-is-the-most-important-pillar-of-health-with-professor-matthew-walker/

The key thing is that you CAN do something about this [without resorting to addictive sleeping pills], most of it is about creating routine, relaxation, and association [bed=sleep].

I hope that helps!

All the best.

Emma

McBreadle

@chiarieds I know you have been in touch with me in a previous post!! Thank you so much for your support!! I did go on that link and I am already a member!! I have read some of their material but I can't can't find a community board like this one, unless I'm being blind!! Lol!! I'm terrible with technology and the internet!! 

I have sent my brother some info to give him a heads up about his boys but he just brushed it off and said that his boys were fine and nothing wrong with them!! My mum is slowly coming round, esp after a couple of days when I fell out of my hammock in my garden and landed on my shoulder dislocating it!! My BF had to help put it back in!! I'm still in alot of pain with it!! She's beginning to realise that this is a real thing that's happening to me!! Xx

McBreadle

@EmmaB thank you for that!! I shall look at a bedtime routine!! Hopefully I can get this down as i didn't sleep well last night until early hours!! Xx

EmmaB

Good luck @McBreadle different things work for different people so I think it's worth testing out a few things - give them a chance to 'bed in' [so to speak!] before thinking they don't work though...
All the best.
Emma