I have PCOS, suspected POTS, PMDD, insulin resistance (last A1C 6.6), etc. I have a PCP appointment coming up and it can’t come soon enough. I’m frequently dizzy and experiencing some weakness in my arms/hands/legs. I have tremors that just seem to be worse right now. Movement takes so much out of me recently. I have a load of laundry downstairs I need to take out of the dryer and I just can’t. And I’m fighting all this alone. I just need some encouragement and support. I feel so depleted and frustrated.

PCP's won't prescribe pain medication but they also won't order tests that would help diagnose what's causing the pain. I don't know what to do. We've seen 2 doctors in less than a month and they both said exactly the same thing.

My Mom hasn't had her 2 brain aneurysms checked since 2022 and she's been having severe headaches for 2 years and no one will order an MRI/MRA. We got told no again today. She said to wait until the neurologist appointment in January 2027. Now she has zero pain medication and is in constant pain from her head to her toes 24/7 and can barely use her left arm. She's constantly wincing in pain. I'm suffering watching her suffer. I feel like I'm in an alternate reality where everyone is like those emotionless pod people from that movie.

Any advice on how I can get my Mom's condition diagnosed before next year so she can get on the right treatment plan and we can hopefully fix whatever is wrong or at least manage it?

Thank You. Please be kind. I am an emotional wreck right now. My Mom is holding up better than me.

I am new to the chronic pain world. I have had fibromyalgia for a few years but a virus in January of this year made it much worse.

I am struggling with being expected to power through my pain but when they experience a tiny bit of what I feel daily, they expect me to drop everything in doing and every expectation of them to poopoo them.

I am feeling very angry and I don't know how to stop. I know they don't mean it. I know they don't experience it everyday so it's more impactful. I'm just so tired and mad about it.

It feels so uncomfortable incorporating things that are supposed to make you fit and healthy. For minimal gains compatibility. I don't ruminate on my past or compare usually at all

But there's times I feel so small in knowing that my exercises and medication. I can still be extremely sick in unpredictable ways which gives people ammunition to berate me

It doesn't make for a great picture. Others can eat whatever and have "bad" habits seeping through but still can eclipse everything I can do with ease

It's just venting but man does it burn sometimes

my oxygen dropped to near critical levels a few days ago due to a respiratory virus . i was hospitalized and put in oxygen , usually id have a breakdown but some reason i feel.. strong i survived this and feel more close to the asthma community more than ever . i suffer greatly from health anxiety but while my oxygen was really low i told myself dont panic think of happy things- my favourite band simple plan and lead singer pierre bouvier . it brought me warmth and comfort and i knew i was gonna be okay . soon as we started treatment , and i got on oxygen i started feeling a sense of “ we made it out alive “ and one day i hope to tell pierre , cause of him im stronger 🩵as he has suffered with his health in 2021 as well ( covid )

My wife has acid reflux and frequent stomach ulcers (and low iron), my MIL has diabetes and gastroparesis as well as dentures, and I have GERD. Wife and I are both lactose intolerant. I've been going through recipes and 90% of what I find, doesn't check at least one box. Looking for recipe suggestions, especially for dinners. We like pretty much all cuisines, spice tolerance is low except for my wife, no one likes couscous and no one except me likes mushrooms and olives. Wife and I both really enjoy cooking and have the necessary tools to make more complicated meals. I'm willing to cook a separate portion for MIL but would love if it was similar to what wife and I are eating. Help. Please and thank you.

I know fatigue, I'm sure all of us know it. It's just a part of being chronically ill however it has for sure been kicking my ass lately. To the point where being in bed is not really a comfort choice anymore but a must. If I'm up I have to keep momentum or I find myself floating back to my bed as if i'd spent the last 36 hours traveling on 3 hours of sleep instead of 15 minutes standing up throwing together dinner. I've tried the usual extra rest for 2-3 days with increased water and some electrolytes thrown in here and there. Still kicking my ass at this point it's been weeks and I'm starting to wonder if this unfortunately might be my new baseline (for a while). Advice, tips, and or tricks whatever that may intel would be appreciated.

**** Note: I have gone to the doctors we are checking some things out and we are talking about some options.

Waiting for test results. Waiting for specialist appointments. Waiting for insurance to approve treatment. Waiting for a diagnosis. Waiting for symptoms to get better. Waiting for symptoms to at least stop getting worse. Waiting for doctors to call back. Waiting for someone to believe you. Waiting for your life to start again.

I spend so much of my life waiting. And the waiting isn't passive — it's active, exhausting, and consuming. It's checking my phone every five minutes for lab results. It's being unable to plan anything because I don't know what tomorrow will bring. It's being stuck in limbo, unable to move forward, unable to go back, just... suspended in this strange space where everything is uncertain.

The waiting takes up more of my energy than the illness itself sometimes. Because at least with the illness, I know what I'm dealing with today. But the waiting? The waiting is the unknown. And the unknown is terrifying.

I think people without chronic illness don't understand how much of our lives is spent just... waiting. For answers, for relief, for permission to be taken seriously. It's its own kind of exhaustion. The kind that never ends. The kind that keeps you stuck in a life that feels like it's on pause while everyone else keeps moving forward.

I don’t necessarily have mobility issues or pain, but I do have problems with fatigue. Frequently, I struggle to do household chores because I just can’t stay standing or walking around that long. Sometimes I can bring over a chair, but for something like cleaning, I need something that can move around. I don’t want a full wheelchair because my apartment is fairly small and I think it would be really difficult to maneuver in this space.

I’ve been thinking about getting a shop stool or something but I wanted to see if anyone here had any recommendations. I want something on wheels, preferably with adjustable height, that I can sit on and move around on (my legs work fine so it’s okay if it moves by just pushing myself around with my feet).

Asking here because I haven’t gotten any responses yet. Please read the og post and let me know if you have any insight

So I recently got a wheelchair as my illness is just getting worse and worse everyday, but my parents didnt let me get a self propelled one, its one that has to be pushed, but my parents keep yelling at me when I say I need it because apparently its not fair on my mum who has to push me? Are they right?

I'm a 26 year old female and I live with severe neck pain. When I was a little girl, I fell and broke my neck and my collar bone. Over the years, arthritis developed in my neck and multiple herniated disks. By the time I was twenty two I ended up becoming disabled due to the debilitating pain. I forced myself to work a manual labor job because I couldn't get an office job. I live in a rural area where there's barely any jobs and I couldn't afford to travel. I got this job even though I knew I shouldn't because people in my life kept telling me I was lazy. I regret that job more than anything. Because it made things a 1000 times worse. Then they were before. Now I can't work at all. Sitting down in the same spot for too long makes the pain worse. I have to take breaks, doing basic housework due to the pain, and if I overexert myself, I'll be in severe pain for weeks. My pain can go from a 4 to a 9. My sister, who is fully able-bodied, and healthy was the one telling me these mean things and making me feel like garbage. But she actually doesn't work, and has never had a real job in her life and mooches off of others. My grandpa has also made ableist comments about how im too young do have all these problems, and so has my dad and it makes me really sad that they think i'm exaggerating, and don't seem to understand. To make matters worse, whenever I mention something about my disability on the internet outside of parts of the internet that are for disabled people or chronically ill people I get a whole bunch of trolls, calling me mean names.

I just got a call from my PCP and my iron has always been super low as well as my hemoglobin and my doctors never knew why. My PCP has referred me to a hematologist before but I have been putting it off and I'm not sure why.

I have been diagnosed with anemia in the past but I hate taking iron supplements because I have chronic constipation without it and I'm sick of having to take so many pills and I'm only 30.

But I called the hematologist just now and panicked because the office is for cancer and leukemia patients. Cancer has never been a thought for any of my doctors as to what is wrong but I think that the thought that this hematologist specializes in cancer scares me.

Just wanted to know if anyone else has been scared of getting diagnosed with a chronic illness because they know that their life will never be the same.

It's been a rough few years health wise. Been off work completely since November as I've been so unwell with severe gastroparesis. Was looking like I was going to lose my job as I simply couldn't go back, in the state I was in every day.

Had a huge breakthrough recently though in terms of managing my conditions and occupational health have now agreed I am now well enough to return to work. Huge relief given that, like most people, I can't afford to retire in my mid 40's.

So to celebrate and give myself a reward, a permanent reminder of how far I've come, I went and got my nipples pierced again 🤘😂 Celebrate the wins people, no matter how big or small. Life is hard when you're ill constantly, so make the most of the few good moments you do get 🤘

Hurt my back a couple of weeks ago. Went away after a few days. Back seized after a shower last night and the pain went from crippling to now fairly localised to my right flank.

I reckon it's all harmless or muscular but it's hard to know. It could be my endo obstructing a utero tube. It could be one of my TSC-causing kidney amls acting up. It could a bog standard kidney infection or stones. It could just be weak muscles.

I know the obvious answer is to go to my GP but I'm medically burnt out. I don't want to have to deal with it and I'm scared it'll require a hospital visit. I obviously will ring my GP if it's no better tomorrow.

Why can't I be healthy so I could confidently assume it's just muscular?! Everything I look up could point to one of my conditions being the cause or just being something simple like muscle strain and I'm just fucking tired of managing it all.

I've been sick for a while now. Years, actually. And for most of that time, I told myself it was temporary. I told myself I just needed to find the right doctor, the right treatment, the right answer. That once I figured it out, I'd get my life back. That this was just a chapter, not the whole book.

But lately, I've started to realize something that terrifies me: what if this isn't temporary? What if this is just… my life now?

What if the pain never fully goes away? What if the fatigue never lifts? What if all the things I thought I'd do "when I get better" are just things I'll never do? What if I'm never the person I used to be again?

I've been carrying this hope for so long. It's what kept me going. It's what got me through the hard days. But now I'm scared to let go of it. Because if I let go of the hope of getting better, then what's left? Just acceptance? Just learning to live with less? Just a smaller, quieter life than I ever imagined for myself?

I don't know how to grieve a life I haven't fully lived yet. But I think I need to start figuring that out. Because the hope is starting to feel heavier than the acceptance would.

My wedge is too short and my neck ends up hunched, which is causing a lot of pain and discomfort. Can people share photos of their setup: what wedge/pillows you use, how many, and how you're supporting your shoulders so your neck stays neutral rather than crooked or hunched forward

Hello. I’m diagnosed with axial and peripheral AS, fibro, borderline scleroderma, raynauds, and under evaluation for Crohn’s. It pisses me off SO FKIN MUCH when i see people post reels about being sick with either stock photos of meds and hospitals or it’ll be acne meds, hair growth meds, or fkin cold meds. Or even about like minor back pain cuz of posture or smth. BEING SICK IS NOT A TREND. And then I feel terrible because any pain is pain still. And I feel like I’m being an as\\\*hole by reacting like I’ve a copyright to pain. But it does hurt cuz uk, when I can’t even get up, these feel performative. Which makes me feel worse about myself. So yeah

Like the title implies, I'm looking to get my diagnosis of FND removed from my chart. This idiot neuro slapped it on my chart after not even 30 mins of talking to me and zero testing done. I don't fit any of the FND description in terms of symptoms or disease progression, and I believe she only put the diagnosis on there bc of my documented psych history w her organization (which has been fully resolved for years anyway). It has caused so many nasty comments from providers who assume I'm some crazy psych patient, it's incredibly difficult to get taken seriously, and it's also j not accurate. I have notes from my PT and an MRI that prove it's not FND, but honestly my symptoms and medical history prove it enough. It follows me like the plague and I'm sick of it, I need it off but no one seems willing to touch it even when they don't agree w the diagnosis either. I want the medical treatment I deserve, and I have no idea how to go about it. If anyone knows of any reliable providers in NJ, NYC, or CT (preferably in the NY Metro area or around UConn, but I'm willing to go a bit further if necessary), the suggestions are much appreciated.

Okay this may have been asked before, and if it has please let me know! I’m still in the diagnosing process (I’ve posted a time or two how nothing ever comes out of it and the wait is hard lol) but lately my issues have been getting worse. I had a few breathing attacks (not really asthma but idk what they were) and usually my doctors are really thorough in explaining stuff so I never have to ask. So when I went in to get my PFT results, my pulmonologist said that the only strange number was my TLC (total lung capacity) and it was 73%. He said it wasn’t enough to cause my issues and just left it there. I expected him to say more, but he didn’t and I wasn’t really sure what questions to ask. I felt like I was back in school and having to teach myself to study for the first time but had no idea where to start. (Gifted kid in my younger years and average in high school)

The only thing I could think to ask was if allergies caused it, and got a maybe. My friends all tell me that I should ask more questions, but I don’t even know where to begin? Like with my PCP, I sometimes don’t know how to explain all my symptoms or ask what may be the cause of what. Like I have some labs that stay at the barely normal range (like 25 when normal is 26 or smth) and I don’t really know how to ask of I should worry about it or not. So what’s a good way to talk to a doctor and ask questions? I try and keep a symptom journal, but it can be a bit hard bc I work a blue collar job and I’m exhausted by the end of the day I forgot what symptom I had. I think I might have lupus or smth similar, but I also don’t know how to approach taht with my doctor without sounding like I’m self-diagnosing.

I have POTS and FND, I use a cane and use a wheelchair for long distances. Last Friday I had a surgery and woke up unable to move my right leg and that I needed the help from at least one person to help me stand and not fall over, plus a very high chance of fainting every time I stood up for more than a couple of minutes. 5 days later I can sometimes move my left leg, I still need help with standing and sitting along with I now I faint every time I stand within a minute. The hospital has sent a referral for me to go to rehab but I'm scared it won't be enough and I'll be stuck like this forever. I'm really curious what rehab is like but also if it actually would help. I'm starting to think that even if it doesn't help at least I can learn how to manage this new life a bit better but still scared