hEDS

I have been dealing with a situation that has culminated in my son facing criminal charges as well as civil penalties involving vulnerable adult abuse against me. It is all finally coming to a head and hopefully the end is in sight without completely distorting our parent child relationship. My current situation is that the extreme distress has caused my first physically overwhelming consequences. A week ago today I broke out in hives that keep getting worse. Some of them started blistering yesterday. I am in an assisted living facility and a histamine diet is not possible. The residence claims they can’t do that and stay within state mandates. Benadryl is not doing anything. I don’t know what else I can do for some relief. Suggestions and ideas no matter how crazy they might be? I do not have a current physician that is familiar with MCAS. I have an appointment with a new allergist/immunologist but not for another 6 weeks! I have so many symptoms besides this both mental and physical health related. But this is the most urgent at this point. ANY and ALL suggestions are welcome… #PTSD #MastCellActivationDisorder #Histaminediet #vulnerableadult #Abuse # #Hives #BorderlinePersonalityDisorder #Anxiety #DID #MentalHealth #Insomnia #MajorDepression #HEDS #AutonomicDysfunction

We need sleep but it hurts to lay down, it hurts to stand, it hurts to sit. If you lay on your back your si joints are going out of place, your side and your shoulders, hips and knees go out, your stomach and it’s your neck and shoulders!!! Very frustrating and so very tired and hurting so bad. I just want to sleep for longer than 3 or 4 hours at a time. #bendy #HEDS #Sleep #sotired #Everythinghurts

Hi, my name is DarkCrystal.

#MightyTogether #PTSD #EatingDisorder #ADHD #BorderlinePersonalityDisorder #HEDS

i have #HEDS and ive been 1 not sleeping well and 2 my back and chest hurt bad whenever i move

I have #Fibromyalgia , #HEDS , #POTS , and other issues. There are days when I feel amazing! Then, other times, I have almost constant symptoms. I can deal with those mostly.

It's when I have different symptoms that I worry. For example, I'm currently experiencing leg weakness, backache and some abdominal pain. I'm scared it's because of something serious.

Am I the only one who worries that something could be seriously wrong but can't know for sure because all the worrisome symptoms can actually be explained by any of the many diagnosed health issues we have? I never know what symptoms to tell my doctor about. I don't know what's normal and what isn't.

Hi, my name is BendyGrandma. I'm here because I am pending diagnosis of hEDS. I was recently diagnosed with Ankylosing Spondylitis due to being HLA-B27 positive, but I don't have the horrible back pain they speak of. I am extremely hypermobile and have dislocated my knee 7 times as well as my jaw and occasionally sublex both shoulders. #hlab27 #HEDS #MightyTogether #Anxiety

#HEDS

I am having difficulty urinating. Somewhere I read those with hEDS have trouble metabolizing water? Has anyone else had this problem?

New fun pain thing:my feet. No idea what changed but no shoe is comfortable anymore. My PT told me a while back that I have EDS feet and would likely need bunion surgery. I had hoped I had longer and really don't want another surgery. Has anyone has this issue or have any advice? #bendybunch #HEDS #footpain

Hi, my name is Scarlett. I'm here because I have an informal diagnosis of hEDS. it could also be marfans, we're not sure yet,but it's very real and I'm in a lot of frequent pain. just trying to understand it all.

I also have a formal diagnosis of #ADHD and #Anxiety

#MightyTogether #HEDS #EhlersDanlosSyndrome #MarfanSyndrome