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We want to hear from you: please tell us about your experience of the online community.

Sam from Lincoln

McBreadle

I was diagnosed with hEDS back in January have been struggling to cope!! I also have fibromyalgia, PCOS and complex PTSD!! My physical and mental pain are getting worse and I hate that I'm relying on loved ones more and more!! I turn 38 next month so I'm not exactly "getting on" but not exactly "a youngster" either!!

I just wanna find people to connect with who understand what I'm going through!!

BTW I used !! At the end of every sentence, it's a quirk of mine!! Xx

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Comments

Tammyjane33

@McBreadle I'm Tammy one of the volunteer community champions here on the site. Nice to mee you. I hope you find the community helpful. I'm sorry to hear you have multiple health issues. I too have health issues and know it isn't easy. Hope you are coping well in the current situation. Take care. Tammy.

chiarieds

Hi @McBreadle - Welcome to the community, & thank you for joining. I can appreciate some of your problems as I also have hEDS. My problems worsened when I hit 40, more so due to the neurological problem (Chiari 1 Malformation) that can be associated with some that have EDS. So, yes, I get what your going through!

Please do look around the forum, & join in with any discussion, & also talk here any time. Great to 'meet' another person with hEDS.

Have you joined our EDS Support group? See: https://www.ehlers-danlos.org/

I hope you enjoy being here with us all. There are also many members with Fibromyalgia, & the other problems you're facing..... so, you're in good company.

Ails

Hi @McBreadle and welcome to the Community. It's nice to meet you and thank you for sharing with us. I hope you will find our forum to be a helpful place for you to meet new friends and gain great support. We are a friendly bunch of people so please feel free to chat to us anytime. There will always be someone on here to listen. I look forward to seeing you on here anyway. If there is any way we can help/support you then please just ask. All the best.

Abs_Scope

Hi @McBreadle - thank you for taking the time to join the community. We are here to help, connect and support each other. I sorry to hear about your many health struggles. You may find posting in different groups a way to connect, have a look around. You may find some interesting posts from others. Take care and keep sharing.

Adrian_Scope

Welcome @McBreadle.

I hope you'll get stuck in and start chatting with others here, but give us a shout if there's anything we can do to help.

adamskis

Hi,
I have just joined for the same reason, my EDS is constantly punching me about at the moment.
i has some TIAs last year and that was the point I had to stop pretending to be normal!
Relying in anyone is very difficult for me, until a short while ago I was a typical alpha male, full of drive, and happy to be supporting others, that changed. Surprise, when the money dried up, all but a hardcore of friends disappeared into the night, but the ones who stayed have learned to accept, and support the “new” me, and I am learning to accept that support.
I wonder if that rings any bells? They have had to constantly tell me that it’s OK not to be OK, and that they are there... but I feel guilty!
my wife has seen our income fall apart, and our activities are severely restricted compared to before, but she has stuck with me, and made the new me feel normal.
i won’t bore you with all of the acronym for my bodily and mental failings,but it has seemed a time of clarity for me, I wasn’t mad, or making it up, or just stupid...all of the things that have plagued me for my whole life became clear...even why even intensive training did little to my muscle mass!

always happy to chat if it’s getting a bit much...provided it’s a day when my brain woks!

McBreadle

@adamskis I know what you mean with friends!! My true friends have stuck by me and never left me!! I've even had problems with relationships as well!! Men see me with a walking stick and they back away!! But when it comes to friends, quality over quantity is the way to go!! Xx

adamskis

Every time!!

I would rather have a few good ones than loads of hangers on!

Luckily, my wife has stuck by me as all of this happened, I now know many who have not been so lucky!

McBreadle

@adamskis you're very lucky with your wife!! So far, my boyfriend has stuck around!! Fingers crossed for this one!! Xx

adamskis

well he obviously recognises awesome when he sees it !

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