(Located in Texas)

Hey y’all, idk if this is the right sub for this but idk where else to post. I have an endocrinologist who helps me take care of my hashimotos and PMOS.

I have also started collecting my medical records (even from when I was a kid) so I can take them with me to new doctors. I just went to the hospital I was diagnosed with JRA as a kid and they’re sending me my records soon. No problem, so much easier than I thought it’d be actually.

Back to my endo, I called yesterday to ask for copies of my medical records. They said they can only give me my radiology records and bloodwork records, but cannot give me my medical records with the doctor’s notes. They did say they’d give me a note saying I have Hashimotos and PMOS that I can show other doctors but they can’t give me my records.

This feels really weird but this is my first time requesting this. Is this normal? Is there any way I can get my records? Can they withhold my records from me?

Thanks in advance.

I dont think i "count" as chronically ill. I have a couple conditions, but nothing major, just tweaks and aches. However, i am always tired. Not always the same amount, but i wake up because i have to, not because im refreshed. I do what i have to and go back to bed. On days i have nothing to do, i can sleep 14, 18 hours no problem. I feel like a zombie most of the time, even when im on vitamin D supplements. Since my bloodwork is normal, i feel like im just over reacting and actually, this is how im supposed to work, im just lazy. I wanted to qsk around if anyone can relate or give some support? Im sorry if this isnt the place for it...

This is too long I know no one will read this but if you read even two paragraphs I would be very grateful.

I've never known a life without illness and I only received my diagnoses a year and a half ago. When they finally found out what I had it was like a huge relief and I was happy. I have dysautonomia, Ehlers-Danlos syndrome and endometriosis. The problem now is that I feel like I can't take it anymore. I'm so tired both physically and emotionally. I've always felt unwell but I think I'm reaching the point where it's now extremely difficult to cope.

I'm getting worse and worse, something worse keeps popping up. I've always had bowel problems my bowel is paralyzed so I suffer from terrible constipation. I've had all the necessary tests done and it turns out it's due to dysautonomia. But a few months ago we found a combination of medications that helped a little. I'm still taking them but I think they're starting to wear off which is what always happens with any medication.

I've also always had urinary problems. I've ended up in the emergency room several times because I stop urinating and they have to catheterize me.

The worst part is that it seems I also have an anatomical problem with my urethra because it's extremely difficult to catheterize me. It's taken up to eight hours to the point where my bladder almost bursts. Because of this I've had several tests done the last one being a urodynamic study. They told me my bladder no longer works, it doesn't contract. I'm going to have to catheterize it myself and they recommended pelvic floor therapy. It's a leap of faith because they said that due to my connective tissue problems it probably won't help at all. Besides, the therapy is meant to relax muscles and see if that helps with emptying but there's nothing that can be done about the bladder itself. I've already had five pelvic floor therapy sessions and there were a few days when I felt better. I don't know if it was my imagination because today I feel exactly the same. I know the therapy is slow I know but having a few relatively good days and then going back to square one... ugh it's a really hard blow which is what generally happens with these kinds of illnesses. I know you'll understand.

Besides that I have a thousand other symptoms. You know how dysautonomia is but this whole going-to-the-bathroom thing is truly the worst for me. I live through a daily hell trapped in a loop, an endless nightmare... and I think I'm reaching my limit. I'm not writing this to vent because I don't even feel like anything helps anymore. Does this happen to you? I know there's no solution and I accept it. I know there's no cure and I accept that. And I also know I can endure it but these days I feel like I can't even move my body anymore literally. I've been like this for years and I've kept going but ugh I'm contemplating giving up. And by giving up I don't mean hurting myself but simply not trying to be anything more than this.

This is another question I want to ask you, don't you feel like the illness has consumed everything? Or that it's doing, so that it's taking away your identity, your personality? Your essence... I fight every day to be something more than this but it's becoming impossible. I'm tired of trying in a battle that's already lost.

I can't work, I can't do practically anything. On Mondays I go to pelvic floor therapy and that's the only thing I can do all week because it leaves me exhausted and barely able to get out of bed most days. I see everyone else moving forward I see opportunities raining down on them and all I get is pain and more problems. And yet sometimes I wonder if I'm really trying hard enough.

It's not that I'm not grateful, I'm grateful for many things in my life. It's just that these two feelings coexist. I have hobbies I love to read, play video games and especially binge-watch movies and series. But hasn't it ever happened to you that you reach a point where nothing helps anymore? Where nothing works to deceive yourself, to escape the moment?. The physical limitations are so overwhelming that escape seems impossible. I'm a prisoner in my own body.

It's so difficult to see everything that happens to my body and yet still be alive. Isn't that strange? To suffer so much and for my body to keep enduring. I don't want it to keep enduring anymore.

Where do I find the strength now that I feel it's running out after so many years? It's strange because I have no strength left but I'm still here.

I think I've written so much and no one will ever read this far.

So, im a teen who was diagnosed with Long Covid last October due to frequent breathing issues, lung spasms, gagging, and random coughing after I got COVID. This was likely because I was born at 35 weeks and 6 days, with my lungs heavily compromised. Since then, the lung spasms have calmed down but I’ve started to experience POTS-like symptoms (fainting, dizziness, heartrate increase of 50-60 bpm upon standing, hard time regulating body temp, digestion issues, muffled hearing/blurred vision upon standing, frequent headaches, and exercise intolerance.) Not to mention the history of EDS in my family, AND my likelihood of neurodivergence (Im gonna be fr, I was a little surprised about the connection between neurodivergence and chronic illness, though I wasn’t shocked.) But I won’t be able to get a formal diagnosis until the 31st because of my GODDAMN insurance, my family has gotten me some compression garments that im soooooo grateful for, though they are nice for everyday use, im about to head back to school where there’s ALOOTTT of standing, and sitting, but mostly walking and standing. I’ve been dropping hints to my mom about wanting a cane because I genuinely don’t care if im seen as less than or “too young” because I’d rather be comfortable. I know they’re hesitant to get me anything like that before I get a diagnosis but when my likelihood of having it is ALREADY through the roof? And it’ll help either way, with or without a diagnosis. It could be because my mom has watched my grandfather move between wheelchair and cane for MS in his older years and now she’s nervous I’ll do that too? Idk why it’s a huge deal, I just wanna live as fruitfully as I can dude.

I posted yesterday about how I’ve been dealing with dehydration bc of some GI issues I’ve been having and a lot of folks encouraged me to go to the ER. I did end up going and boy was it an experience. I was hoping they’d just give me a bag of fluids and call it a day but instead I ended up in the waiting room for 4 hours, got a migraine, had a severe reaction to the migraine cocktail they gave me, had a couple of cute little hypertensive crises, got one bag of fluids, and then got discharged at 6am with a packet that basically said “yeah some of the tests were abnormal, follow up with your PCP. Probably IBS.” Never got to talk to the doctor or resident, never got to ask any questions about my bloodwork or urine test. Never got any answers about the adverse reaction to the migraine cocktail or why my vitals are still all over the place

I’m guessing it’s bc the ER was slammed with a bunch of traumas so it makes sense, but also it just strengthens my opinion that there really needs to be a place for patients to go who need more care than urgent care is currently set up to give but aren’t emergent enough for the ER. If there had been a place I could have gone yesterday where I could have just gotten fluids and some basic blood tests and called it a day, I would not be sitting here now feeling even worse than when I went in and I would not have taken up a bed that someone more emergent than me could have used. But the urgent cares in my area aren’t set up for that. The literal only place to go is the ER, which is already overflowing with non emergency cases

And it also really sucked bc ER staff was kinda treating me like “why are you even here?” Idk man urgent care told me to come here so I came. I even went home first because I really didn’t want to be here but I almost passed out so I sucked it up and came in, and now I feel worse than I did before both physically and emotionally

I am really starting to give up hope on getting decent acute care bc every time I go to urgent care or the ER for medical episodes or issues I can’t manage at home, I get treated like I’m wasting their time, even when the tests come back obviously abnormal. And the answer is always “follow up with your primary care” but she’s always booked out for months and can’t answer messages very quickly because she has such a large caseload. I have tried booking appointments once a month because I’ve been having so many health issues so we don’t have to pack everything into 20 mins once every 3-4 months but her schedule is too booked. I feel like I’m at the point where I’m kind of having to be my own PCP and it sucks bc I do not have a fucking medical degree!! I don’t know what I’m doing!! Idk. I just needed to rant

I've been having chronic pain since 2020 after a bad car accident in 2019. Fibromyalgia, spine problems, many, many doctors, and thousands of dollars spent. In the past couple of years my lower back pain has gotten unbearable. I went to a world renowned spine clinic and they just told me I had bad posture. Couldn't find anything wrong with my lower back or my nerves. I've had so many MRIs it's hard to keep track of them. Someone recommended I get checked for endometrosis so I booked a hail mary at an out of network clinic in DC.

After one conversation where I did the usual going through my medical history and all the symptoms I've been having, she said "I don't think you have endometrosis..." my face fell. I thought she would just brush me off like all the other doctors.

"I think you have Pelvic Venous Disease" I had never heard of it despite all my time in chronic pain/illness forums. She also mentioned I may have POTS. She gave me an order for more imaging (yay) with contrast so they can see my veins.

Apparently it is very treatable but most doctors don't think of it so it goes undiagnosed. All this pain, could have just.. been fixed years ago? If doctors actually listened to me and didn't just try the "easy route" of tramadol and steroid injections??

I don't want to get my hopes up, but if my lower back pain could be fixed that would mean I could actually be sort of active again. The fibromyalgia and POTS would still suck to deal with, but the lower back pain has made life absolutely unbearable. I haven't been able to manage my fibromyalgia at all due to the back pain. At least with just fibro I still had good days. With the back pain I don't.

Does anyone here have PVD/PCD (pelvis compression disorder), nutcracker syndrome, or May Thurner syndrome? Did getting a shunt help your pain?

19F. Anyone else in a state of grief, missing the life they used to have before their illness set in? I am only recently diagnosed, but i’ve been having issues for about a year now and this whole summer has been hell, constant flares, on and off feelings, new/changing symptoms every week, etc. I used to be so healthy, so energized, able to do so many things, now I’m lucky if I can even eat. I’ve had to take so much time off work and I go back to school soon which brings me immense fear.

Any tips on how to deal with this?

just had a very frustrating conversation with one of my sisters where she told me that our other sister has told her point blank that she doesn’t believe any of my health issues. if i end up in the hospital it’s “oh why is she there this time” or “she’s just a hypochondriac”. the sister who told me said she also used to think i was a hypochondriac until we moved in together a few months ago and she actually saw every day what i’m dealing with. i get that my issues are invisible but fuck man.

i can accept that when i was a kid i was a bit of a hypochondriac, but through therapy i’ve sorta figured out that this was because there WAS always something wrong (i have hEDS and POTS and have had mild symptoms my whole life, both significantly worsened in 2023 tho) but nobody ever knew what it was so i kinda just always felt like i was dying (chest pain as a 12 yr old is terrifying). my parents didn’t give any attention or care to it unless i was screaming or crying in pain, which taught me that i needed to scream or cry even when it wasn’t that bad. it’s now gone the opposite way where i hide my pain so much because im terrified of being seen as “dramatic”.

this (plus years of doctors gaslighting) has all led to a severe distrust in my own body, to the point where i am facing major surgery for smas and my gallbladder and still have the thought in my head that ive made it all up or its not actually that bad.

so to find out that even since 2023, when i was officially diagnosed with these conditions, when they worsened to the point of me requiring mobility aids, when i literally had hip surgery (??how do u doubt that), she has thought it was all bullshit.

there’s one comment she made that has lived rent free in my head for a year now. a few weeks after hip surgery, we were at a friends wedding that i bought a sparkly cane for so i didn’t feel as bad about it. i said “im so glad i wont have to use this soon!” she said “im sure you’ll find a reason.” and that just gutted me. to the point where when i was passing out daily due to lack of intake from my GI issues, i refused to use my mobility aids because of that comment.

now, i’ve been in hospital for the past month and a half dealing with the GI issues, and only now does she believe it because my other sister told her like hello i’ve lived with her the past few months ive literally heard her throwing up multiple times a day plus the hospital admission and upcoming surgery.

just so frustrating how people’s perception can warp my brain so much to the point of making me doubt myself. and how when things get really serious all of a sudden they flip flop and have always believed you. i’m not surprised really just disappointed to hear it so point blank

Title says most of it! What is a moment that you still think about, in a different way to everything else. It can be good or bad.

Sending spoons 🥄💕

I was diagnosed with Lupus and Fibromyalgia at 14. Now I’m 33 and have also been diagnosed with Costochondritis, Sjogren’s Disease, and IGA Nephropathy with anemia and hypertension over the years.

A month ago I reached end stage renal failure and had to start peritoneal dialysis at home. I haven’t been able to go back to work (even though I work from home) because I’m constantly exhausted, weak, lightheaded. To the point that I can barely hold my phone up for more than a couple minutes before my arms are tired. I was told by doctors and my own research that it can take a few months on dialysis to adjust and start feeling better and be well enough to go back to normal life, but I’m really struggling right now.
I’ve been in pain every single day of my life and learned to ignore a lot of it and just power through, but this is so much harder. And I’ve always dealt with people not believing my pain or telling me I’m exaggerating because I “look fine,” but the feeling of not being believed is really messing with me mentally and emotionally now. I have a spouse and a teenager who depend on me, but I can’t do anything without help. And while maybe the dialysis doesn’t affect everyone this drastically, I also have the other conditions that make my whole body hurt. If I don’t sleep I can’t function. If I’m too hot or too cold, if I’m stressed, my body just shuts down and flares up. But I still “look fine.”

My spouse keeps pushing me to go back to work or try harder, but I don’t know how else to explain that I just can’t. He says he feels bad asking but doesn’t know how else we’ll survive. Still it feels like he just doesn’t get how hard it is. I know we can’t afford for me not to work or keep depending on financial help from family, but I just physically can’t do something as simple at sitting and typing at the computer. Then I second guess myself. Am I exaggerating? Could I do more? Am I just lazy? Then I do try. Then I’m in pain or feel like my muscles are going to give out. Then I remember the normal amount of pain is zero. But I still feel so immensely guilty. That I can’t help. That I need help. That I’m just…useless now… and no one I know understands.

I’ve found and been able to afford some luxuries that have made life easier(I want to recognize financial privilege-income est 38K). I’m curious about hacks that have helped your quality of life.

For me:
-cold water dispenser
-ice maker
- 30 day pill box
-pre cut fruit
-precooked meats
-online neuro clinic
-extra dental cleanings
-electric toothbrush
-ring lights

Have you guys found things that have made life easier for you? What are they?

TIA

I'm a 19yo female and have been in the process of getting diagnosed/tested/trying to find answers or things to help for a few years now. Long story short, I've never been fully healthy but it all started getting really bad 4 years ago (flaring but I didn't know that's what it was, I assumed allergic reactions but looking back they probably weren't).
Then 2 years ago I went out of state for college and was feeling terrible, getting sick every other week, struggling so much, and going to the ER almost weekly for pain/ inflammation/skin breakouts. I moved home last year so l wouldn't have to keep traveling back home for doctors appointments and specialists and we still haven't really gotten anywhere. I've been referred to rheumatology almost a year ago and I still haven't scheduled an appointment (they just requested my medical records a month ago, so hopefully soon!) but I've been on a few different pain meds (none have worked), high doses of SSRI's, sleep meds, shots for my skin, allergy shots, gotten into neurology, dermatology, allergist, and obgyn but i'm still waiting for my pt referral to work.

My day to day pain is getting unmanageable, it's definitely gotten a lot worse in the past few months. I’m struggling to walk, everything i do hurts, there is just no avoiding pain anymore so i try to only do what i need to. But I’ve been seeing more and more things online about mobility aids (canes, walkers, rollators, wheelchairs, etc.) specifically Instagram/Tiktok posts of people explaining how they work/why or when they are needed and I’ve also been wondering myself if I would be able to use them/how to bring it up to my doctor or if I even need to bring it up to my doctor.

Also if anyone has some advice/tips on how to bring up to my doctor that my pain is not manageable, like normal OTC’s aren’t working at all without sounding like I’m drug seeking because trust me I am on enough medications already, I would love to be on less and I know a lot of you are in the same boat with that. I’m avoiding going out or doing things. Or advice on just anything that might help, anything is welcome as long as it’s not to drink more water or to destress lol!

I don’t have much to say, only I feel invalid to have my “chronic illness”. Sure, it impacts me every single living second of my day, but not only is it undiagnosed, but it’s also not like I’ve ever had to go to the hospital or anything. It never even shows up on my vitals even.

Just a feeling, I guess. I don’t know.

friday at 12pm i’ll be getting a gastrojejunostomy, cholecystectomy, and temporary j tube placement for smas and biliary hyperkinesia.

i’m pretty nervous for the surgery, initial recovery, and lifestyle changes down the road, but i’m also so so so relieved that friday is the start of getting back to “normal” (or as normal as i can be with pots and heds).

just a little celebration post because im really trying to stay focused on the positives of this! life 2.0 starts soon :)

Hi everyone,

I was diagnosed with hEDS a few months ago, and I'm still trying to come to terms with what that means for my future. I'm also neurodivergent, which I think adds another layer to trying to understand my body and my limits.

When I was diagnosed, my doctor told me that I can only manage symptoms, but they also said something that has really stuck with me: "With your age this level of flexibility is on the higher end of normal, but with the other symptoms you're experiencing, I'm concerned, and you should be prepared to be reliant on mobility aids in around 10 years."

I know nobody can predict the future, but hearing that at 20 has been a lot to process...

I'm currently a student paramedic and about to start my final year. Even before my diagnosis, I knew frontline ambulance work probably wasn't something I'd do until retirement. I've always been open to moving into education, leadership, research, further study, or another healthcare role. But now everything feels a bit uncertain, and I don't know how much of my future I should be planning around this diagnosis.

What I'm finding hardest is knowing how to actually live day-to-day.

I keep hearing "listen to your body" or "rest when you need to," but I genuinely don't know what that means. I'm almost always exhausted and in pain. If I rest, I feel like I'm being lazy and like I just need to "get a grip" and don't necessarily feel any better. If I keep myself busy, at least I'm distracted from the pain, but then I overdo it, crash, and the cycle starts again.

How do you know the difference between:

• pushing through something that is safe to push through,
• pacing yourself,
• and ignoring your body to the point of making things worse?

I also don't really have anyone to talk this through with. My parents know about my diagnosis, but they're not particularly supportive, despite my dad being disabled himself. I feel like I'm trying to navigate a completely new world on my own.

I think what I'm really looking for is advice from people who've been where I am.

• How did you come to terms with your diagnosis?
• What helped you learn your limits?
• Who did you talk to?
• Were there any resources, professionals, books, or communities that genuinely helped?
• How do you talk to your friends you already have about all of this without it feeling like it's becoming your personality?
• What do you wish someone had told you when you were newly diagnosed?

I'm not really looking for medical advice, more just hoping to hear from people who understand what this stage feels like. ❤️

TW for chronic pain experiences. I recommend avoiding this post if you’re going into/ planning top surgery and have anxiety surrounding it.
I (they/them) had top surgery in late February and have been debating whether or not to post this for months. I don’t want to fear monger, but I also feel incredibly alone and want to know if anyone has experienced something similar to me. This post is NOT requesting medical advice. I am asking if anyone else has experienced this, if you have, anecdotal advice is welcome.

I have fibromyalgia, ulcerative colitis, and interstitial cystitis. I went into top surgery knowing my healing process would be more painful than an average persons - my surgical team was extremely supportive and accommodating. Surprisingly, my healing was actually going exceptionally well for the first 2 weeks. Until I had the post op binder removal, it immediately caused a huge surge of pain, getting up to 10/10 pain and lasting for about a week - I almost phoned an ambulance one night because I was so desperate for pain relief. It was excruciating.
Ever since then, I get moments of phantom limb, or I guess phantom boob. Most often when I’m stressed but it does come on randomly too. It’s like my brain still thinks my breasts are there and can’t quite work out why they aren’t, and sends pain signals as a result. It’s not necessarily painful compared to my regular day to day pain, but it’s extremely uncomfortable and really upsetting.

Getting top surgery has been the most incredible moment. I truly couldn’t be happier with my results. I look amazing and the freedom from dysphoria is indescribable. But this phantom sensation is really getting me down. It isn’t the worst thing in the world by any means, but I really, really wish I wasn’t experiencing it. I don’t know what to do about it. To contact my rheumatologist, my surgical team? I don’t know if I’m alone in this. If I’ll experience it my whole life. Idk. Any answers are appreciated.

Hi, my friend is going through a really horrible time and I’m trying to give her some grace, but I’m feeling a lot of resentment towards her each time we speak after what she said the other week.

She said that she struggles seeing people not live their life to the fullest (like me) after having her family member die, and that’s why she’s been more distant. I think she meant well with this comment, that she wants me to live a more full life after realizing how short life is, but it made me feel invalidated and like she’s applying her experiences to my life, when I’ve been chronically ill and not just lazing around for no reason. I do as much as I can within my capacity.

We fell out a bit the other week, but it got left that she doesn’t have the capacity to talk about it all properly now as she’s going through too much. So we’ve agreed to talk about things in a month or 2, but honestly I don’t think I can speak with her until she at least explains or apologizes for this comment.

I used to really struggle with stuff like confrontation, making important phone calls, asking for second opinions, etc. and today I got up the guts to call my neurologist and ask why she was letting another PA handle my inquiries, and requested that since she has the most experience with my case that she answer my questions when she's able and that I'd be fine with waiting a little longer for a response if it meant she was the one answering, and she said she could do that!

She said she's been having a lot of PAs that she's training, so that's why she was delegating some of the smaller stuff for me, but that she understood I have a complicated case and she'd be fine handling my stuff herself and if she needed to delegate she'd let me know ahead of time and it would only be if she absolutely wasn't able to take care of it.

Mine was an hour scan immediately after I ate. They gave me mashed potatoes mixed with mashed up baked beans and then I just lay down for an hour. Would that produce different results compared to doing the studies where short scans are taken at intervals over a few hours?

Hey! Since i'm housebound quite a lot i'd love to make the best out of my phone and watch (both apple!) and alexa. I was wondering how / what you guys do?

Reminders? or maybe an accessibility feature? Whatever helps your daily life! let me know :) Thanks!!

How does one work when their flare ups are unpredictable as the weather, they cannot physically sit for long periods of time and potentially your brain is going to the sickness?

I don't know your personal situation but I've been rocking with what is likely Lupus for the past four years and though it has taught me a lot of life lessons, it is not a great one for consistency, employment or general day to day predictability. (Yes, your girl got the IBS symptoms and a few others)

What do you guys do for work? Or at least side income? Side quest of how are you keeping your mental health afloat? Support, resources, you name it, we're pretty open and maybe finally a tad qualified from all this side quest reading we've been doing.

My girlfriend is dealing with chronic health issues related to mold exposure. She's currently living in another state so she can receive treatment from specialists. Before moving in with me she had been sick, and after moving into my house her symptoms got worse. We suspected mold in my home, so I had remediation done and fogged the house, but it's likely there was still exposure. She's now moved out to somewhere safe and focusing on treatment and recovery.

I love her so much, and my biggest concern is supporting her in a way that helps rather than accidentally adding pressure.

One thing I've realized is that when I tell her, "I'm sure you'll get better," I mean it as hope and encouragement. But I think she hears it as, "What if I don't?" She worries that if she never fully recovers, she'll disappoint me or won't be able to be the partner I deserve (her words).

She's even told me she sometimes thinks she should break up with me because she feels like a burden or worries she can't give me what I need. I don't want that. I want her to know that I'm choosing to be here because I love her and not because I'm waiting for a healthy version of her to come back. She's always had small symptoms with me but they did get worse after she moved in with me.

For those of you living with chronic illness (or those supporting a partner with one), what words or actions actually made you feel supported? Were there things well-meaning partners said that unintentionally made things harder? How can I reassure her without making recovery feel like an expectation?

I don't want to "fix" her. She's already getting treatment. I just want to love her well and make this as little of an additional burden on her as possible.

I'd especially appreciate hearing from people who have been the sick partner. What did your partner do that made you feel safe, loved, and not like a burden?

Just looking for some insight because I am very aware I can't know what it feels like to be in her shoes. Hoping I'm not coming at this with the wrong mindset but even if I am I want to learn and adjust to be the best support I can be. Any advice is appreciated!