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Anyone with Ehlers-Danlos?

Dec 30, 2014 12:28 PM

Always like to "meet" other patients, especially men as so few of us have it comparatively.

Dec 30, 2014 12:57 PM

I have Elher Danlos type 3 and it's so frustrating x

Dec 30, 2014 2:31 PM

I have EDS-hypermobilty, found this pain diary because someone recommended it on the FB support group I belong to.

Dec 30, 2014 11:06 PM

@angel11 Hey, me too! Must have been the same group. I'm type 3 as well.

Dec 30, 2014 11:13 PM

I suspect EDS-H is at the root of my problems, but no definitive diagnosis yet. Having a hard time finding anyone who accepts that hypermobility has negative consequences for me, let alone willing to consider the possibility that I might have something 'rare'.

Dec 31, 2014 4:42 AM

I have Ehlers Danlos Type 3, as well! Just started using the app :)

Dec 31, 2014 9:01 PM

I have Type III and Type I (not that uncommon to overlap). If you find GP/etc doesn't take it seriously, phone the hypermobility association - they are very good at reminding medics of their obligations and how unethical ignoring established conditions is.

Jan 01, 2015 3:30 AM

I've got some classical overlap with my type 3 as well.

Jan 01, 2015 9:10 AM

Can you explain what EDS-H is?

Jan 01, 2015 1:14 PM

Yes, I always like understanding what other people are going through so if you can explain this illness and how they discovered you had it, I would really appreciate it. Unless this was suppose to be your room only. If that is the case, I am sorry!!!

Jan 01, 2015 5:07 PM

EDS-HM here. I get nerve pain more often than joint pain, honestly. My physical therapist recently gave up on treating me, as it is so easy to injure me. My PCP is at a loss for how to manage the pain. My family is in denial about how disabling the pain is. I had to quit going to university because I can't focus and often am stuck in bed with injuries. I want help, but have no idea who to ask.

Jan 01, 2015 7:58 PM

EDS-H = EDS III (hypermobility type)
EDS-V = EDS IV (vascular and sadly high mortality type)
EDS-C = EDS I and II (classical types)

Personally I prefer the numerical types as they highlight that I and II aren't the same but "classical" lumps them together.

Jan 02, 2015 12:45 PM

Hi, I have hypermobility type as well, although been rubbish at keeping using this app, I keep a daily brief summary for my pain psychologist (and me) stomach pain has taken over my joint pain levels this last two weeks, am on low FODMAP and have been for a year but nothing's working atm! Can't eat anything without severe stomach cramps and getting somewhat fed up of it all! I think I need a holiday.... ;)

Jan 02, 2015 3:53 PM

MrsGDK, I feel your stomach pain and diet changes! I have had IBS for 20 years and the docs would tell me, "more fiber & grains." So I did just that and now I'm allergic to wheat, whole grains & soy." Tried the gluten free diet, and I'd rather die from allergic reaction! I attempted to follow the fodmap diet but the holidays interfered. My PCP said I would be better off doing a "cave man" diet, and it took me a week to figure out he meant paleolithic. These special diets are for the birds. I'm now trying to use logic and reading labels, and if in doubt I don't eat it. Considering I've given up wheat & whole grains, most of my fiber was coming from foods forbidden on the fodmap diet. I now have pelvic floor dysfunction (bladder & bowel) & congestion (abdom veins), and when my digestive system gets out of whack its bad for days. I need a dietician but my insurance won't cover it because I'm not diabetic. If you have any good recipes that don't taste like a piece of paper, I'd love to know!

Apr 01, 2015 5:19 PM

Hi I have ehlers type 7or arthrochalasia. Suffer widespread pain internal and external. I also have rheumatoid arthritis and many eds associated conditions including chiari and gastropatesis. Pots and autonomic dysfunction. Mitral valve prolapse and regurg. Also have the added osteoporosis as part of my type. Which means I'm breaking more bones in addition to dislocating loads. I have many other complications including bleeding. Live on liquids and try manage my pain as best I can.chiari head pressure pain stops me in my tracks. Horrific pain. Hoping this app may make me remember during a day when to stop assess what's going on and plan to control my pain better

Apr 01, 2015 5:20 PM

The gastro pain can be terrible too. McAfee plays a huge role in food intolerance and worsening gut reactions

Apr 01, 2015 5:35 PM

Mcad even

Apr 05, 2015 11:29 PM

I have EDS Type 3, got diagnosed when I was 16!

Apr 06, 2015 6:04 AM

EDS Type 3 here. I am 44 and was diagnosed a year ago January. I've dislocated shoulders since I was a baby. My shoulders would always go back in before my parents could get me to a doctor so they never believed them. Just last year alone I tore my rotator cup (shutting a car door), sprained my right knee (putting cinnamon rolls in the oven), and dislocated my right ankle (walking down the hallway).

Apr 06, 2015 9:14 AM

I'm type III and was diagnosed in 2005. Life is agony and I are a walking stick/wheelchair. Worst joints are on left side of body - shoulder, wrist, thumb, SIJ, knee and ankle. Also things like IBS, gynae problems. Apart from that I'm all good! Great husband and darn good sense of humour all great in staying sane.

Apr 06, 2015 4:21 PM

Boobs I have Syringomyelia, but as far as I know I don't have EDS or Ehlers.

Apr 06, 2015 6:48 PM

@ Weezie... Check your spell check...its Bobbs, not boobs! Lol 😉

Apr 20, 2015 12:50 PM

EDS hyper mobile type. Just diagnosed. I'm 24 and in Central New York. If anyone in the area is looking to meet up or just have someone to talk to, I am totally looking for friends. I just left grad school on medical leave, and my boyfriend broke up with me. Currently looking for a job as well that I can handle physically. Life is looking difficult right now, but my family is really supportive. I'd love to connect with more EDSers.

Jul 02, 2015 10:14 PM

I'm 21 and have eds type 3. I am in Iowa. I have been trying to find those with eds. My town is small so not even doctors understand.

Jul 30, 2015 7:49 PM

I have eds type 3. Based England, UK

I hate this condition. I'm finally giving in and having to retire from work and I'm only just 33.
No husband,no kids... This sucks!

Aug 01, 2015 4:09 PM

46 years old and have eds v11c with jhm and osteoporosis ,now in a wheelchair as here's not one part and not fucked ! Some days I can not hold a cup with ou my fingers going ,on good pain killers that help, up to 12 years ago I worked full time ,as a baker ,got five kids and one grandson who keep me going ,

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