r/eds

Is there anyone who knows about how to get a mast cell flare to calm down? Ive had itchy skin since I was a teenager but half a cetirizine a day was enough to keep it in check. But the other day I tried out a condenser dryer in the my bedroom for the first time and after sleeping in my bedroom that night Ive just been SO itchy.

I happened to have a doctor appt already booked and she gave me some supposedly strong antihistamine (180mg fexofenadine) but it hasnt done much. I have big itchy welts around joints or anywhere with pressure. Is there anything else that would help it chill out?? If I went to an urgent care clinic is there anything else they could even give me?

I get chest pain, heart pain, pain just about everywhere, exhaustion, fatigue, fast hr, weird blood preasures, nausea, sweating, etc. Whenever I look something up when i'm having weird symptoms it says to look for spasific symptoms and to go to the ER if i have them and i'm just like... I experience that everyday... how do I know?

I'm very grateful I don't have medical anxiety so I don't really stress about it but i never know when its worth an ER visit and when its not. I really hope i don't get appendicitis because I experience stuff with the same symptoms often. Thats one I am a little worried about.

Within the past 6 months, I was diagnosed with generalized joint hypermobility syndrome by my PCP. After some research of my own, I found that in other places that term isn't really used anymore and is rather called HSD? I'm still a little confused about it. Anyways, my PCP suspects I may have hEDS but she cannot make the diagnosis herself. I have been seeing OT and PT for joint problems, and was recently discharged from OT with some strengthening exercises and a recommendation to get some silversplints for most of my finger joints.

The problem is, I've been experiencing a lot of fatigue and general body pains pretty much every day, which has made it very hard to continue regularly with my PT exercises. I wanted some advice from some people who have maybe gone through it themselves on how they keep up with it, since movement is super important. I'm just so frustrated having let it get this bad and now I keep subluxating my kneecap and shoulders and further damaging the connective tissue.

I also wanted to ask, since my PCP suspects hEDS, if it's worth it to pursue a diagnosis. It's a fairly rare disorder, and I'm worried about the hoops I may have to jump through with minimal reward since I've been told that HSD/JHS is treated the same way as hEDS. Is it really worth it to get a hEDS diagnosis? For reference, I live in the United States.

hi i 18 ftm got diagnosed with urethral prolapse, and bladder prolapse and im suspecting i might have rectocele too based on of my symptoms. i was diagnosed with pots earlier this year following dysautomia last year because of an increase in my symptoms causing me to need to go on medication. my gyno wasn’t very specific and ive never been to this clinic before since i live rurally with no speciality’s really nearby so i cant find a note only a care summary. i would think the urethal prolapse is getting advanced considering its sitting at the opening. my gyno highly suspects that i have ed’s and it makes a lot of sense with everything im experiencing down to nerve pain starting to advance now and chronic joint pain atleast since middle school. looking at the diagnostic criteria i can meet except having the rule outs. she did make it seem like im going to need to have surgery but i start physical therapy on friday and im wondering how much it’s actually helped people with the symptoms of it? should i try to hold off surgery as long as possible? im active and in shape, ive had an episode of inconsistence, ive been having to push to pee and still have so much urgency and i’m so afraid to piss myself in public or at work because i’ve had close calls. i just don’t want to deal with this anymore and im just in so much pain too and still getting things firgured out. my primary is looking into what referrals to make for me since she’s only ever had one other client with eds and she did not start the process for diagnosing them and they cognitively function differently so it’s a different/ new thing for her.