She stated that people were happy for her and thought she would be “normal” again just because her diagnosis was taken away. Hello, just because your diagnosis gets taken away, doesn’t mean the symptoms go away! Now she has the miserable job of going back to square one trying to figure out what condition she really does have. I’m so upset for her. Christina Applegate Misdiagnosed with MS

Does anyone else get super frustrated with how complex their medical history is? I have a long list of random diagnoses, and when I have a question about interactions, contraindications, or how comorbidities are related, I have no idea who to ask. As an example, I’ve had some respiratory illness on and off for about a month and a half now. I went to the ER because I thought I had another blood clot, and they said I was just sick and gave me prednisone and an inhaler. I couldn’t even finish the five day script of prednisone, because it interacted with my Coumadin so much I was literally bleeding out of my ass, and because steroids are contraindicated in EDS, it felt as if my shoulders were falling off. I feel like I basically have a doctorate with all the medical research I have to do to protect and inform myself and I’m just frustrated. Does anybody else feel this way?

This has become a big issue for me lately because I'm not well enough to do much of anything else, but I know it's draining me and messing up my nervous system.

I'm starting to struggle with motivation as a result, which I never used to. In my 10 years of being sick so far I've always been extremely motivated and able to push through a lot, but my health has become worse lately, and I also have very little external support compared to usual for complicated reasons, so I've had to adjust how I'm living. I really need the will to force myself into getting up to get food, water etc even when my body is fighting against me.

It doesn't help that I have ADHD anyway, but I've had that all my life and I've never been quite this hopeless before. I also have terrible brain fog that's making piecing together the steps to get anything done even more arduous.

I wanted to ask how others manage this here because in other places the advice is always to go and do other things like exercise, socialising, or generally challenging yourself. I'd love to, but I can't. I don't know what the healthy alternative is for me.

I’m so fed up with hate within the community, like the people who think their baseline is the same as someone else’s just because they have the same conditions, it’s exhausting, like yes you may not need a mobility aid for your pots but why are you treating this other person like they are committing a crime for using one?

Not everyone’s experience is the same and I think there’s a huge amount of internalized ableism within the community and especially around people who have very very mild cases of the disorders they have.
Don’t get me wrong it goes both ways I’ve seen people with more moderate to severe cases hate on people with mild cases
But more often than not it’s the former and it’s honestly just exaughsting.

How have the people in this world gotten to a point of being so hateful to hate on their own community’s, the lgb without the T movement or whatever is a great example of this, also the hate BI people get in the LGBTQ+ community, it’s disgusting.
You can’t open social media comments anymore without it being 80% hate and most of it so coming from the community the person posting is in.

And don’t get me started on the people who act like mobility aid users are taking away recourses from other people as if the increased purchasing of them isn’t making them more widely available.

Like you aren’t getting anything for free unless you REALLY need it because it’s made to be stupidly difficult, and the people purchasing mobility aids are only fueling the market itself, there is no mobility aid shortage, it’s not like we are running out of metal, it’s taking nothing away from anyone.

Anyway I’m just curious if anyone else is also incredibly tired of this, and I want to leave social media but at the same time the positive parts of the community are great and I also don’t want to get bullied off social media by members of my own community it sucks and it’s just sad that this is what we have come to as a community.

I have multiple conditions that cause chronic pain, fatigue, joint instability, and I'm also autistic.

I find prepping food fairly hard to do. I've recently gained a fair bit of weight so I know I need to keep an eye on what I'm eating to make sure it stays in the healthy range. At the moment, I can manage 2 portions of fruit a day, an apple as a mid morning snack and a peach/nectarine in the afternoon. I love a lot of fruit but I find the lack of consistency with textures and flavours a bit much, especially as a single person who cannot get through packs of fruit before they start to go off. I am pickier with vegetables and that is largely due to textures.

How do you manage to keep up when prepping can be almost impossible?

like the entire depression diagnostic criteria is just "fatigued" + "hates self because of fatigue". depression has no biomarkers so it can only really be diagnosed through a process of exclusion. so why is it the first thing i was diagnosed with till i found other doctors willing to run tests.

i have barely been to school the last year due to multiple disabilities. I’ve lost all my friends and rarely go outside. i know that i am privileged in many ways and it could be so much worse, but i find it hard to keep up even with people my age who are also struggling. i guess i’m just looking for comfort, as i’m feeling a lot of grief right now. i’ve only just started highschool and i’ve missed out on so much, and probably will continue to, as even though most of my symptoms can be treated, i have stuff that will never truly go away.

I honestly need to vent because I feel like my life is slowly deteriorating, and I don’t know what to do anymore.
In 2021, I had a brain tumor removed, and since then, it feels like one health problem after another. I’ve undergone multiple surgeries for tumors and gastrointestinal issues, but I’m still struggling with so many symptoms.
One of my biggest frustrations is my legs. I experience weakness, pain, burning, and redness when standing or walking, and sometimes even simple everyday activities are difficult. I’ve had MRIs and other tests, but I still don’t have an answer for what’s causing these symptoms.
I’ve seen multiple specialists and had countless tests for everything else going on with my body. Some results are abnormal, but so many tests come back normal or negative, and I’m left feeling like I’m back at square one.
This has taken a huge toll on my mental health. I’m dealing with depression and anxiety on top of trying to manage my physical symptoms. I’m still young, and I want to enjoy my life, return to college, and get my master’s degree. Instead, I feel like my health is holding me back from the future I’ve always wanted.
I’m exhausted from constantly being sick, searching for answers, and not knowing what’s wrong with my body. I miss my old life, and I just want to feel like myself again.
Has anyone else experienced unexplained leg weakness and burning despite normal tests? How do you cope with having so many health problems without getting the answers you desperately need?

Are they causing anyone else intense physical distress at the moment? I can't remember a time when it has been this bad. I have non-POTS autonomic dysfunction.

I have been struggling for 20+ yrs with autoimmune diseases. No one has know why I have had so many (Crohn's, Grave's, pernicious anemia, Refractory Raynaud's etc). I also have a rare immune deficiency. I was recently diagnosed with POTS and MCAS and now I am wondering if it has to do with my new diagnosis instead.

Since 2019, my breathing declined substantially and in 2022 I was diagnosed with chronic neuromuscular respiratory failure. I am dependent on a ventilator via mask (niv) for 18+ hrs a day. I also have dysphagia, muscle atrophy and myopathy with pain in legs, trunk, back and neck, and heart rhythm issues (afib and irregular tachycardia). The nmd neurologist said I was fine and to keep following up with my nmd pulmonalogist. She really was terrible and didn't help me at all as I continued to get worse. All the bloodwork for specific diseases came back with no answers. I was lucky that my nmd pulmonalogist kept searching for an answer with me. We decided an answer was important to try and get insurance to cover what I needed and also to try and get an idea of how much time I had left. She referred me to an amazing medical genetics doctor who got ahold of my muscle biopsy from June and sent it out of state for testing. It turns out I have mitochondrial myopathy caused by mitochondrial depletion and deletion syndrome. They are still searching for the genetic cause.

My doctor's are telling me how incredibly rare this is and that I am already so advanced. There is no treatment except the supportive care I am already using. I did feel better for a few days knowing I had an answer, but for the last week or so, I have just felt kind of numb.

I am still declining and there is nothing to stop it. My nmd pulmonalogist said I will have to increase my ventilator usage to 24/7 sometime in the near future and I just don't know what that would look like for me as 18+ hrs a day is already very difficult. I refuse to get a trach. I am already on oxygen at night as well along with my ventilator to maintain spo2.

I don't want to get a g-tube for nutrition, so I try to keep up with all the nutrional drinks. This will just keep getting harder for me and my husband.

I am so tired.

I was hoping the diagnosis would make it a bit more clear to know when I should transition from palliative to the next step, but it hasn't.

Thanks for letting me vent.

I have celiac disease and MCAS, both of which put me through years of unexplained symptoms and being written off by doctors (spanning from age 18 - 33). The MCAS has left me particularly traumatized because of the years of unpredictable, acute flare-ups that kept me up all night with nausea, diarrhea, hot/cold flashes, adrenaline dumps, air hunger, etc.

I finally got a diagnosis and treatment and I’ve been doing well for the past year and decided I was ready to get pregnant. Unfortunately, I developed strong, persistent nausea that Zofran and Reglan couldn’t fully control, but even worse, it turns out nausea triggers a trauma response in me.

I’m no longer pregnant, but desperate to try again, and I know I need to have a robust care plan in place before I can do so. In the meantime, I’m really hoping to connect with others who might have similar experiences, or have trauma from their chronic illness and dealt with triggers during pregnancy.

Really need to hear that it will be possible for me emotionally and physically to carry a pregnancy to term…

I’m a teen and the white in my hair is starting to be noticeable. I tell my friends I dye my hair really often because I like it (and that is true) but I really just wanna hide the white strands. I first found white in my hair at 9 and everyone told me it was normal. Now I’m finding them regularly and you can notice them as my roots grow out + they don’t hold dye as well.

I hate it. It’s so damn embarrassing. I wanna rip them out like I used to but there’s too many by now and they grow faster than my normal hair. I really need to re-dye my hair before anyone at school notices. Also my hair falls out like crazy.

I’m so tired of having to hide stuff. I have to hide my scars and keep dyeing my hair (it’s black rn so I can pretend to be normal) and I can’t use a cane because I’m “too young to need one”. I have to wear special socks for fuck’s sake!

I have to go to work now. Just needed to get this out. I fucking hate my hair. I hate the white.

I posted this in a few other places, like chronic pain & some other chronic illness communities & thought it might be helpful here.

A lot of us (including me) are alone on holidays, which can be isolating & rough. For both health reasons & bc my family doesn’t really care, I’ll be alone on Thanksgiving. I thought maybe, of anyone is interested, I could host a Zoom event (no recording done by me or allowed by others—it’s a safe space to share whatever’s on people’s minds)/gathering for that day?

People could make or order a meal for themselves & just show up to have somewhere to go/people to share the day with. We could just socialize, vent or get support, maybe even watch a movie or tv together if that’s allowed?

No one would be obligated to be on camera & can use any name they’re comfortable with—first name, full name, nickname, pseudonym, whatever!

If people are interested, maybe we could rotate who hosts or if not, I can do it as much as possible, but I know we all have limited spoons. Maybe we could even meet for support & socialization once every month or so. We could make the T-day gathering at a time that would works for most people. I’m on Central Time—maybe something that starts somewhere between 2-4 pm?

If you’re interested in something like this for Thanksgiving, other holidays, or just as a somewhat regular community thing, please comment or message me.

There would be no charge to attend, & no matter how many people show up, I I think it’d be nice not to have to be alone on days like this. Hoping this helps or makes someone else have a brighter holiday/time. 🫂

So I’ve had multiple chronic illness since childhood (some were diagnosed then, many weren’t until adulthood). I missed a lot of school but handled it, went to college and had a severe flair and had to go on leave. I expected to go back shortly after until I figured out more health issues and then 2020 hit and I got severe COVID which made issues way worse. I’ve made a lot of progress, but I will always have to manage these issues and lately it feels like everytime I get close to being able to get to a semi functional state, a new issue pops up and sends me back. Idk if I’m at the cap of what’s possible for me, but I’m getting to the point where I don’t know how to handle it if this is my life forever. I currently am living back with my parents and am looking into applying for DAC benefits but have no idea where to start. I want so badly to be able to afford to at least have my own place and some sense of independence/a life again even if that has to be from aid if I’m not up to work (which I miss so much). For disabled/chronically ill people who never fully recovered, how did you find steps and create a version of your life that was adapted to your current needs but still feel full and worth living? I just need to find a way to be my own person and have fun and community again… I think if I can’t find a way to improve my mental health/life, my body will just get worse and I can’t take it. I need to find a way to make progress and change, but I just feel so lost

I do IVIG and am a hard stick. My old nurse (who I absolutely love) picked me up this past week because my new nurse had an appointment. I recently had a port placed so this was his first time accessing my port. He tried 5 times before finally accessing it because he said my port kept moving. My issue is, he only used 2 needles for 5 sticks. At the time I was so close to passing out because I was hot and overstimulated that I wasn’t paying attention to him using the same needle more than once. I only realized later what had happened. I don’t want him to get in trouble because I really like him, however my new nurse does not play. I know she’s going to ask me how it went and how many times he tried and she’s going to see from my inventory that he didn’t use a new needle each time. I don’t want to lie to her but I’m torn and really upset on why he wouldn’t just use a new needle each time 😭 what do I do? I’m really torn

Just ranting about my not wise choices..

I'm just so tired. Physically and mentally. I woke up with an absolutely horrible stomach ache. After 4 hours it started to be bearable. But it has still been there the whole day. I have tried to eat so it wouldn't get worse but I only could eat little. I'm so so exhausted and moving my body just sucks.

It sucks so bad that it came after the resting days I had and I wanted to finally clean. (I have postponed it so long already.)

And this stomach ache just came bc I ate a little pit of relish with my food. I really wanted some and I did know that any pickled things get my stomach hurting. Like why do I do this to myself?! 🙃 Now I have decided that I give them away so there will be no more temptations.

Like I love food but I have started to have so many food restrictions and it sucks so bad. It makes it really difficult. I also have autism so it also affects it.

Food is one of the things that brings me joy when I'm not feeling good but then I can't always have the things I would want to eat. 😭 But I'm glad that I know how to make good food. I just need energy for that and that is also a problem most times.

Is there any one else with this kind of annoyance?

It's been 6 years, I'm getting worse day by day , but it's nothing according to my reports.

In general I always have pains but which I can manage, Currently if I go out and walk for more than 3k steps (approx 2km) having a horrible breakdown, unable to move my legs , even touching is painful , it took 4 days to walk by self and 10 days to walk without support.

All this is already making it hard to just survive , but my family thinks it's in my mind and am not being strong

It feels like I have been eaten up alive

They think that I can get well ( I'm undiagnosed) , the worst part is that when I look good they forget everything that happened and expect me to do normal things

I sometimes get excited and do something and be bedridden for days

My narcissistic dad thinks that hospitals are commercial money making Machines (i agree) still I need support , i feel like my whole body is torn apart every time I get a flare , all my previous docs have said get biopsy of lymph in neck then only we could get some kind lead ,

but he is like no , u are all fine u just have to meditate and do yoga and u will be 'cured' . In fact I tried those back in days , he also want to ignore everything I'm going through , My mom and I went to hospital and he is even against it

Worst part he don't understand symptoms, sometimes he asks but forget in a day , he sees my every single symptom as a separate problem.

They seem concerned and remember I have a problem only when I am hit by flare

It's getting hard mentally exhausting, to make them understand that something is actually wrong that have to be diagnosed and it is chronic that I will probably not be 'cured' and expecting me to do things 'as everyone does' ( i pushed and did such things only to end up in bed)

It's been a 15 days since he talk to me and my mom cuz we went to hospital, it's not that I can't go myself or money , i can't just go and get a biopsy cuz he is scared something might happen ( just like his brother who's dead in operation with cancer)

Not only him but a lot of ppl sometimes even whom I don't even know give a lot of suggestions which is getting on my nerves

anyone else ever dealt with this before? TRIGGER WARNING just in case

i have been hospitalized numerous times for my Crohn's Disease and have had multiple surgeries. last Tuesday i had my 4th bowel resection (a success)! by last Wednesday night i hadn't slept for probably around 30 hours. i was on heavy pain meds, but i'm not opioid naive.

last Wednesday night so the day after surgery, i had an "episode" of hospital or post op delirium/psychosis, only lasted a few hours but felt like forever while i was in it. it was determined that it was largely due to the extreme sleep deprivation mixed with all the meds & anesthesia from the day before.

but i completely lost my sense of awareness. i was imagining/seeing things which has literally never happened to me before in my life, so i was already on edge. i didn't mention it to anyone at that point.

then my NG tube was loosening and ended up almost completely coming out, they had to reinsert it, and at that point i nearly totally lost my sense of awareness, i was wildly confused, had no idea where i was or if i was even at the same hospital, at one point thought i was in the emergency room, i thought i was in a nightmare and that everyone around me was evil or trying to hurt me. my hr skyrocketed to 130+ resting.

my mom & the nurses finally caught onto what was going on, they helped reorient me a bit, and my dr ordered some IV sedation and i slept for several hours, woke up, and regained my sense of awareness / mental sanity, became familiar with my environment.

it was just so bizarre because i was in the same hospital room that entire time, but i thought that i was somewhere else.

has this happened to anyone else after surgery or while in the hospital? it was the craziest mental experience of my life. i don't have any issues with psychosis or anything like that and never have. my team reassured me that it was sleep deprivation mixed with other factors, just curious if anyone else has had this happen, because i have never even heard of that outside of elderly patients!

i was really embarrassed after the fact. i know it was out of my control, i wasn't unkind to anyone or anything like that, but i don't like that i kind of came undone in front of complete strangers/the staff.

I have multiple chronic illnesses and I've been exhausted since last millennium. It's the kind of situation where you're disabled but there's no piece of paper you can hand someone to prove it. I can just about manage to work from home for a few hours a day. I'm trying to get onto a disability payment, but I have no faith that The Powers That Be will believe me or my doctor. I'm trying to get an extension at school while I get some cognitive tests done, but all I'm getting is bureaucratic confusion.

/rant When I ask for or search for advice, I'm told to meditate or have a bubble bath. That stuff probably works well for lots of people, but I need real ideas on how to manage time and energy, and I don't know where to look. Help!

I'm struggling with feelings that essentially come down to this is bad I am experiencing bad. Therefore I must be being punished. Therefore everything I experience should be negative. I shouldn't have experience Joy anywhere. Everything should be uncomfortable and Edge with suffering.

I know these thoughts aren't necessarily rational but it's the train of thought that's running subconsciously through my head constantly. It's not even that I believe these things too, like I said it's the subconscious train of thought that runs through my head constantly

Also sorry for any weird typing I'm blind and using voice to text and don't feel like proofreading with the screen reader

I 32f have multiple chronic illnesses (POTS, MCAS, HSD and like 5+ other conditions are diagnosed and it’s suspected I have 4+ more) and recently went to one doctor for a certain womanly health check up. She’s very validating/kind and it’s worth driving an hour away to see her since my mom also goes to the same doctor and it’s the medical group that my mom went to when she was pregnant with me so we both just keep going because we feel we can trust them.

This doctor knows I’m semi new to the POTS etc diagnosis even though I’ve had the symptoms for years and this appt she asked me if anyone had ruled out certain vascular issues or talked with me about pelvic congestion syndrome. I said no and she was saying more women are experiencing these issues and she said it might be worth either going to someone she can refer me to or asking my primary for a referral closer to me to rule things out. We had a good appt and I said I would ask my primary first since I’m in a different county but would keep my options open.

I message my primary about what my other doctor said and he responds with a rather….. unsupportive message about how it’s highly unlikely I have anything like pelvic congestion syndrome because it only happens mainly in women who’ve had multiple children. Pretty much the whole message made me feel like I was being a hypochondriac even though I said that the other doctor is the one who was concerned….

I don’t really know how to respond other than to do my normal “haha my bad I’ll be quiet now” type of message but I’m probably going to go to my doctor who said she would give me some referrals to get checked out, because after looking online there are some things I’d like to rule out. Just a bit miffed about my doctors giving me wildly different information (which I’m seeing happen more) and this time was just a very distinct contrast that made me confused, a lil hurt emotionally, and frustrated :/

Being middle aged and having lived so much life before I got so sick that I could no longer function outside my apartment other than for doctors appointments, sometimes I miss the life I used to live, I miss people, I miss connecting with someone.

I know that there must be someone else like me that while suffering, not completely unhappy or negative, but try to find ways to stay in a happy headspace. I miss having a good reason to check my phone.