u/rosasmarshmallow

I'm having a hard time telling between stretchy skin, saggy skin and excess skin.

I was recently diagnosed with HSD, though I believe I could have hEDS if my doctors actually heard me. I've been hearing it's "stress" and "anxiety" and "it's probably a normal thing" for my case.

I'm trying to gather plausible evidence for my next appointment, and I don't know whether my skin actually is more stretchy than expected or if I'm making things up since I can't compare.

anyone knows how to tell the three of them apart?

I got my official diagnosis of HSD last week on the second appointment with my orthopedist. though, i believe i could have hEDS. they're still running tests and handing me off to see new doctors, so it's a never-ending cycle, as we, chronically ill people, know.

I've struggled with my health ever since I was born. saw dozens of doctors, got a thousand different tests done, and lately got some diagnoses, but it all felt somehow... unconnected. atopic dermatitis, hormonal changes, weak bones... it all came to a rare genetic disease called Mccune-Albright Syndrome, but not even that explained everything.

years later, I finally got diagnosed with HSD, and I feel relieved in a way, but... I don't think that's all.

over the years, I've grown almost numb to being called "anxious" and "hypocondriac" for being hyperaware and self-conscious about what my debilitating health could do to me. but I'm tired of it.

yes, I feel like an impostor sometimes. sometimes I believe it's truly all anxiety, that my brain is making me feel things that aren't there. sometimes I truly believe I'm faking it, that I'm coming up with things just to be seen. sometimes I believe I'm going crazy.

it's just so hard to be feeling things all the time and no one actually pays attention to it. every single doctor goes "it could be anxiety" or dismisses my pain for "normal" or "expected in my case".

I didn't \*choose\* to be born sick, to live in a body that betrays me. I don't \*choose\* to feel awful every single day. I just want to be normal, is that difficult to believe?

I got my official diagnosis of HSD last week on the second appointment with my orthopedist. though, i believe i could have hEDS. they're still running tests and handing me off to see new doctors, so it's a never-ending cycle, as we, chronically ill people, know.

I've struggled with my health ever since I was born. saw dozens of doctors, got a thousand different tests done, and lately got some diagnoses, but it all felt somehow... unconnected. atopic dermatitis, hormonal changes, weak bones... it all came to a rare genetic disease called Mccune-Albright Syndrome, but not even that explained everything.

years later, I finally got diagnosed with HSD, and I feel relieved in a way, but... I don't think that's all.

over the years, I've grown almost numb to being called "anxious" and "hypocondriac" for being hyperaware and self-conscious about what my debilitating health could do to me. but I'm tired of it.

yes, I feel like an impostor sometimes. sometimes I believe it's truly all anxiety, that my brain is making me feel things that aren't there. sometimes I truly believe I'm faking it, that I'm coming up with things just to be seen. sometimes I believe I'm going crazy.

it's just so hard to be feeling things all the time and no one actually pays attention to it. every single doctor goes "it could be anxiety" or dismisses my pain for "normal" or "expected in my case".

I didn't *choose* to be born sick, to live in a body that betrays me. I don't *choose* to feel awful every single day. I just want to be normal, is that difficult to believe?

I've been dealing with broken trust for a long time, and it has saved me a lot of time not to trust anyone. ideally, the only people I trust now are my parents and my two best friends, and this is debatable because of how much my idea of them can vary depending on the day.

recently, I've entered a new period of my life and met a lot of new people, and I've been struggling to accept this. they don't yet feel safe to me, and I'm reluctant to let information about me slip without the anxiety of what they can say or do with this later.

I don't know what's going on in my brain, I'm too busy right now to think about it, but ever since the start of our friendship I've felt weird. This is the very first time I'm interacting with different people my age after being abandoned by old friends and basically living in isolation for over a year, having contact only with safe people.

Group assignments is a huge trigger for me because it brings out how much I can't communicate, and I end up being narcissistic and negligent to other people because I get overwhelmed. Plus, the social interactions and all social anxiety thing.

I've debated this with my new friend group and we almost split up, but we've managed to stitch it back up. Though, last week it happened again and we all threw things at each other. I pointed things that bothered me, they said I'm acting weird and distant, I argued it was because they don't include me in the organization of things and neglect me at all times, and sometimes I don't want to talk because I fluctuate between love and hatred and it'd like that... Straight to the point, things are not good. I feel different from all of them and they don't seem to understand the way I think or why I act the day I do. I don't like to use the "I'm like this because of.." card, but I had to pull it, and it backfired.

The group is split. No one really talks to me anymore besides small talk, and even that is forced. They turn around when they see me, look away when we pass each other in the hallways and talk amongst themselves when they think I'm not looking. The conversation dies when I arrive.

I'm all alone, again. As it's meant to be. Back to nothing.

People always say "oh, talk to someone else", but it's not that easy. Everyone already has their friends, and my only friend group after quite some time has pushed me aside.

I don't know what to do. I feel lonely, but a sick part of me kinda likes it, and I hate myself for it. I've been having panic attacks and I want to cry all the time.

By the way, it's university, so it means having to do everything completely alone or with people that seem to hate me.

I was born with DDH (developmental dysplasia of the hip) and developed a bunch of other symptoms throughout childhood, including hypermobility and respiratory problems, alongside benign systolic heart murmur.

​

I grew up having a large group of doctors poking me and dragging me around the hospital for exams. At one point, everyone was just throwing separate diagnosis at me.

​

I was diagnosed with a rare genetic disease called Mccune-Albright Syndrome (MAS) at four. It mainly includes metabolic and hormonal changes, cafe-au-lait spots and bone fibrous dysplasia, in which the normal calcified tissue of the bone is replaced by weaker, fibrous tissue, causing fragility, chronic pain and possible recurrent fractures that require intensive care.

​

Growing up, I got used to feeling so much pain that I'd cry and beg my brain to make it stop. I'd catch myself wishing for my leg to finally break just so it'd stop giving me such pain, but fear the mere though of it. Reporting these symptoms to the doctors, all I got back was "it's normal for your case", "it's completely expected", "it's just growing pains", so I didn't really mind it.

​

For almost 15 years I was just getting separate, superficial care from doctors, until I got dismissed by the hospital. No pain management treatment, no doctor appointments, no exams. I was on my own.

​

Some time later, a nurse from my local healthcare unit sent me off to a hospital whose doctors specialized in studying complex cases. I've been attending appointments there for over a year and am currently seeing 4 different specialties, two of them being the most relevant to the case: endocrinologist and orthopedists. Very recently I found out some of my symptoms aren't actually normal, and it's messing with my brain. My endocrinologist specializes in bone metabolism and he explained to me that "growing pains" aren't largely known around the medical field, and might not even be a real thing.

​

Anyways, I'm extending this a little too much, so let me get to the point: I've had hypermobility all my life along with other symptoms and no one investigated on it. About two weeks ago, I heard for the third time that it *could* be related to MAS, knowing bone deformity and expansion could cause ligaments and tendons to get more lax. Apparently, I have a bunch of symptoms that all sum up to something no one has the answer to just yet, or at least aren't telling me, but everytime I visit the doctor they come up with a new test I've already heard about for a condition I think might be the answer to most of my health issues.

​

Though, I can't pinpoint it directly because 1) there's a discussion whether it's one diagnosis and not the other, a bunch of criteria that are often flexibilized or misdiagnosed; 2) there isn't a genetic marker for it, the diagnosis is purely clinical; and 3) there is NO research on the overlay of MAS and hypermobility — as the doctors want to investigate on.

​

I've searched all over the internet, read a bunch of scientific articles and there isn't a single one that mention FD/MAS along with hypermobility.

​

Does *anyone* know if there's a chance it could actually be a thing?

I was born with DDH (developmental dysplasia of the hip) and developed a bunch of other symptoms throughout childhood, including hypermobility and respiratory problems, alongside benign systolic heart murmur.

I grew up having a large group of doctors poking me and dragging me around the hospital for exams. At one point, everyone was just throwing separate diagnosis at me.

I was diagnosed with a rare genetic disease called Mccune-Albright Syndrome (MAS) at four. It mainly includes metabolic and hormonal changes, cafe-au-lait spots and bone fibrous dysplasia, in which the normal calcified tissue of the bone is replaced by weaker, fibrous tissue, causing fragility, chronic pain and possible recurrent fractures that require intensive care.

Growing up, I got used to feeling so much pain that I'd cry and beg my brain to make it stop. I'd catch myself wishing for my leg to finally break just so it'd stop giving me such pain, but fear the mere though of it. Reporting these symptoms to the doctors, all I got back was "it's normal for your case", "it's completely expected", "it's just growing pains", so I didn't really mind it.

For almost 15 years I was just getting separate, superficial care from doctors, until I got dismissed by the hospital. No pain management treatment, no doctor appointments, no exams. I was on my own.

Some time later, a nurse from my local healthcare unit sent me off to a hospital whose doctors specialized in studying complex cases. I've been attending appointments there for over a year and am currently seeing 4 different specialties, two of them being the most relevant to the case: endocrinologist and orthopedists. Very recently I found out some of my symptoms aren't actually normal, and it's messing with my brain. My endocrinologist specializes in bone metabolism and he explained to me that "growing pains" aren't largely known around the medical field, and might not even be a real thing.

Anyways, I'm extending this a little too much, so let me get to the point: I've had hypermobility all my life along with other symptoms and no one investigated on it. About two weeks ago, I heard for the third time that it *could* be related to MAS, knowing bone deformity and expansion could cause ligaments and tendons to get more lax. Apparently, I have a bunch of symptoms that all sum up to something no one has the answer to just yet, or at least aren't telling me, but everytime I visit the doctor they come up with a new test I've already heard about for a condition I think might be the answer to most of my health issues.

Though, I can't pinpoint it directly because 1) there's a discussion whether it's one diagnosis and not the other, a bunch of criteria that are often flexibilized or misdiagnosed; 2) there isn't a genetic marker for it, the diagnosis is purely clinical; and 3) there is NO research on the overlay of MAS and hypermobility — as the doctors want to investigate on.

I've searched all over the internet, read a bunch of scientific articles and there isn't a single one that mention FD/MAS along with hypermobility.

Does *anyone* know if there's a chance it could actually be a thing?

my doctor has been investigating me for hEDS, and I have a very high chance of also having POTS. alongside all expected symptoms, sometimes I notice my heart rate flies up when I stand, but sometimes it only happens as palpitations, with an overall normal heart rate. is it normal for POTS or should it considered an exclusion criterion?

I've been showing symptoms of BPD for longer than I can recall, but it's been especially clear the past months (I'm nineteen). I'm waiting for an appointment with the psychiatrist so I can talk about it, but healthcare won't let it happen soon. I'm an undergrad at biomedical science, focusing on neuroscience, so I have access to every scientific article and study you can think of. I've been researching, talking to professionals, and everything is leading to the diagnosis.

when I let myself be the most vulnerable, I admit I think I have BPD. a lot of people had called me "hypochondriac" and "crazy", others don't even care.

I know most people won't understand, I'm used to it, but it still hurts my soul to be misunderstood.

I've talked about this with my mom a million times, and she just ignores it or laughs it off. I love my mom, don't get me wrong, but it makes me mad. it makes me question myself.

maybe I'm coming up with it all, maybe I don't even have BPD, but still. I'd just like to be heard by someone.

any tips on how to deal with it?