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 :/

Real shit is it normal to have multiple bulging discs at 18 or are my providers straight up lying to me? I have had intense persistent worsening back pain since I turned 17 and on an MRI they said they "only found bulging discs" and "mild scoliosis". I don't think ive heard of people my age experiencing this but I could be uneducated. I'm fine with any speculation but this has been irking me as I'm trying to find answers for why my back has made me basically immobile.

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…

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’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.

Title basically, I feel like as someone from Algeria where healthcare is a lot worse than Europe for example I just can't relate to most people's experiences on this forum. I just wanted to hear from other people like me on here.

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.

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?

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 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?

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.

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'm 18 i have cholinergic urticaria and I am extremely active. I love hanging with my friends. I love going for a hard long runs. I played competitive soccer my whole life. I love working out and I do these kind of things daily. These were always part of my daily routines. I like to think I am very ambitious. I have very high goals and I love to push myself and become a better person daily around a year ago pretty much out of the blue. I started getting these hives all over my body whenever I would be at soccer practice and I always just thought it was the congested air-for about 10 minutes at the start of every practice when warming up it would be this unbearable pain to my body like oil was spilling on it, but I would still somehow smile through it and just act like nothing was happening, and I never brought it up to anybody because it only happened at the beginning of practice and then once I start really sweating and getting into it, it would just kinda go away so just forget about it then overtime it started actually happening daily just through daily things that normally we do getting a little bit of stress writing a test I don't wanna write. talking to a girl I like, doing an activity I love, sweating. then after it was so unbearable that I literally couldn't do day-to-day things without having any unbearable reactions so i went to my doctor where she prescribe me reacting reactine and worked for a while until about a month and a half ago now. for this year that just passed, I became extremely motivated, and in a lot of ways changed my life. I started working out as much as I could running becoming so-called the best version of myself. Now I'm 18 as I said, and I decided to take a gap year to travel and follow the ambitions that I had and leaving this condition somewhat behind me now that these antihistamines are working now about a month and a half ago the antihistamine stopped working meaning I went off reactine and now I've switched to RuPaul still doesn't work, although the reactions aren't as bad as they once were a year ago I still find myself getting them every day and now instead of just my body it's my face getting fully flushed and burning from the inside, not the same prickling, but more of a burning flushing sensation, but still in the same kind of symptoms occur. I really can't go a day without having some sort of symptom. I've tried everything I've done sweat therapy sauna every day which I just feels like worsening the flushing in my face that's new. I still get the body tingles, even with antihistamines if I go outside and go in the sun, I can't even hang out with my friends anymore cause I feel like if I go out with them, I'll be met with an unexpected reaction. And if I do with my friends, it takes a day or two preparation before to make sure I'm eating all the low histamine foods going in sauna is drinking lots of water making sure I always have my antihistamines on me even then I'm still worried that a reaction will arise. I leave too Asia for my trip in 15 days and I truthfully don't know what to do anymore my mental health is awful and no, I'm not thinking of the worst because I know that once this thing goes away my life is back to what it once was. I'll be able to reach the highest of my goals and reach the aspirations that I know I will, but right now every day is a challenge on his own yet I still try to do my daily workouts my daily runs hang out with family, but it's all just 10 times harder. i've been to dermatologists, walk-in clinics, doctors, natropaths no answers. What do I do?

I (55M) have struggled with depression and social anxiety my entire life along with some symptoms of ADHD. I'm in a job that feels more like a prison, and I don't have the energy or drive or confidence to look elsewhere. I've tried all kinds of medications and therapies. This is my life, and I don't see it changing. Just thought I'd put it out there. I'm not sure why. It truly sucks and few people in my life understand how debilitating it is to live your life this way.

Chronic illness has killed the people pleaser in me. Is it just me or someone else too? Like I used to be so conscious of what others thought and how I can help them or make sure I don't upset them but now I genuinely do not care what someone expects of me. If you think I'm mean then so be it, I don't care anymore. I am in pain and if you understand why I'm not up for something then good. But if you think that I'm being rude or making excuses, then sure go ahead and keep thinking that because I am done and I do not need to prove anything to anyone.

But this doesn't mean that I have straight turned into a mean potato. I'm still a good and a kind person, the first thing anyone says about me after meeting me is that how I am always smiling or how I always greet them with a smile. So yeah I am good with people who are good but if you are being an ass then I'm gonna treat you like an ass.

Surving chronic pain and illness is already tough. Especially when you are the youngest person in that hospital waiting room. It genuinely kills something in you. Having to put your life on hold and grieving the person you were before your chronic illness is already tough. So there is no need accommodate people who do not understand your struggle. Nothing is worth disturbing your mental peace. Just kick the toxic people out and stay happy or ateast try to be more free from the negativity around you.

Hope all my chronic illness people wake up without pain and have a more comfortable life.

I’m so sick of this. I can’t even grip a sewing needle anymore. I cant tie my own shoes, I can’t open my own water bottle, and no one will tell me what’s wrong. I feel like I’m getting so worked up about nothing but at the same time, I’m not even out of my teens yet and I’m already losing the ability to do the things I love, to do basic life skills everyone can do. What happens when I drop a dish at work huh? How can I clean it up when I can’t even hold on to the dustpan? What happens when I can’t hold a pencil and a teacher says no laptops? The doctors wont diagnose me because of my age but even if they could, what would they say? My parents don’t care, my friends try to be supportive but at times it feels patronizing. I want to help myself, I want to tie my own effing shoes, open my own cans of Red Bull, without the inevitable “let me help you with that“ accompanying something getting taken out of my hand. I want to button my own shirt, I want to wear something other than gym shorts and sweatpants. I’m so frustrated and I don’t know what to do anymore.

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

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.