u/chronically_eva

TW for medical trauma used in context and talking about poop + medical advice welcome! This will be long, sorry.

Context: Last year in February my life changed. I started experiencing significant gastrointestinal issues that progressed a lot with time. To keep it shorter: many typical symptoms associated with gastroparesis and intestinal dysmotility + other possible conditions of the gi tract. Fast forward to August last year when I ended up in the ER for severe dehydration, anemia and malnutrition. At that point I was 10 kilograms down on the scale. They did take me seriously, did blood tests and performed an ultrasound and upper endoscopy. Except anemia, dehydration and vitamin deficiencies they found nothing. I was surviving on a 125 ml bottle of ensure so constipation wasn't present at that time. My doctor suspected gastroparesis or intestines related dysmolity/condition. I got diagnosed with unspecified intestinal dysmotility. They didn't want to let me out since I was in such a bad shape without knowing the exact cause. There were no available places in the ward so they decided to move me to another hospital for further testing. Sadly that was a huge mistake, if I knew I wouldn't agree. At that hospital I was left with no nutrition and help. They stopped all IV's and didn't do any more tests. They also took me off of my psych meds and POTS medication which resulted in heavy mood swings, s thoughts and nearly fainting in the bathroom with a heart rate of 160 (hit my face and cut open my lips). They called a psychiatrist on me and told me it's all psychosomatic and in my head. I heard awful things like: "There's nothing wrong with you, just eat and stop faking it" or "so what everyone has some pain sometimes, I do too and am I laying here taking up someone's place? No, so shame on you" or "You have to stop drinking ensure, those are only for very sick people and you're not sick, just a faker" and so much more things. I tried to advocate, my parents tried but nothing changed their opinion. I was too exhausted to keep fighting for help from people who should take care of me. They let me out after 5 days of torture with no medication, no referrals, no nothing. Just awful medical trauma that grew stronger than I thought. I continued to struggle. Saw 2 different doctors outpatient using on it the rest of my energy and was gaslighted again. After that I gave up, nobody cared about me. Not one doctor cared if I live or die. I shut down and struggled in silence.

Jumping to now: I lost even more weight and things are not going great. I'm struggling with severe constipation and don't know what to do anymore. I was constipated for 2 weeks, managed to have a very small bowel movement after laxatives. They didn't work as good as before. Now it's been almost 2 weeks again so a month in total with almost no bowel movement. For the past few days I've been in so much pain and discomfort, my symptoms progressively got worse. Horrible abdominal pressure and pain, significant bloating etc. It gets progressively harder to urinate, my period didn't come also. Everything I eat makes the pressure worse but still no bowel movement. I can feel the stool pushing against my rectum. I get the typical feeling of having to go but nothing comes out. I am scared to push really hard and try to force it out, I don't think it's a great idea. I am sweating so much, I feel extremely dizzy every time I stand up, I fainted 2 days ago. My head hurts so much, my heart rate is acting up. It's difficult to walk, sleep or think. Yesterday I noticed a brownish fecal smelling liquid oozing out of my rectum. I don't think this will resolve at home. I am scared it's a fecal impaction and terrified of getting a bowel obstruction. Logically I know I should go to the ER but my trauma grew so strong I'm willing to risk my life and wait until it's so bad an ambulance has to be called. I know I am stupid, I wish I could forget what my eyes saw and what my ears heard at that hospital. I wish it didn't destroy me so much and didn't make me doubt in receiving help from medical professionals ever again. But it did and I don't know what to do. I'm not looking for someone who will tell me I should go because I know it, I want someone with a similar constipation experience tell me what to expect, how to convince myself this is necessary. If there's really someone out there with a good experience that didn't leave them traumatized. I am at lost and don't know what to do. Can somebody please help? In any way...

Yesterday I went to the bathroom to get ready to sleep. After around 5 minutes my legs started feeling like jelly/cotton. Vision went blurry, tinnitus etc. I decided to lay down to prevent injury in case I do faint (it's not common for me but happened before). I slightly elevated my legs and as I was laying there my hearing became muffled, I was struggling to keep my eyes open, vision went pitch black and I fainted. My heart rate was fine so I doubt it was my POTS. Once I regained consciousness I stayed laying down for around 15 minutes until I felt better. Went straight to be, checked my blood sugar and blood pressure. Blood sugar was fine, blood pressure slightly low but it was within my baseline. So still I have no idea what caused it beside maybe my BP or blood sugar being different during this episode. Anyways, I layed down in bed feeling a bit better but my legs were so heavy. I noticed they are kind of not cooperating, like I was telling them with my brain to move but nothing happened. When I really focused I was able to slightly wiggle my toes. My feet were a bit numb but beside that I still felt pressure and pain. I couldn't wake up my parents because I obviously couldn't get up. Beside that it was 2AM so they would be pissed. So using my hands I turned myself to the side and went to sleep. Maybe I should've went to the ER but they dismissed my neurological symptoms many times so I doubt they would help in any way especially because I could still wiggle my toes.

I find it really weird and confusing, as I said earlier I don't faint often and when I do it's due to my POTS or low blood sugar, but I never had something like this happen. Anyone had something similar happen to them? I don't even know how to call this "event". What do I say when I find a good neurologist who takes complex cases? It's not complete paralysis, more like brain - body connection failure idk. Any insight is welcome!

For context: I have a VUS in the COL12A1 gene that is so rare only 2 people worldwide have it which leads to no research and re-classification. Based on my symptoms and medical history my doctor suspects Bethlem Myopathy type 2 or EDS - myopathy overlap. There's not really a dedicated subreddit so I hang out in here.

Anyways I have a few questions that don't leave my mind and little to no answers. Looking for someone with similar experiences and more answers than me. I'd love to learn more so I can understand my body better.

Question nr. 1: I have bladder issues that make my life quiet hard. Reoccurrent UTI's and issues with emptying. I always had problems but they got significantly worse in the past few years. I almost never can pee without pressing on my stomach/bladder. If I don't press my bladder can't empty entirely. That issue also causes bladder retention despite drinking lots of fluids. For a while I thought I had a slight bladder prolapse but I think it's something with the muscles. Has anyone with mEDS or another muscle related disorder experience this?

Question nr. 2: Can muscle related genetic conditions affect stomach and intestines and it what way? I have horrible gastrointestinal issues. They started in 2024, I ended up in the hospital then but they didn't found anything in the endoscopy or ultrasound. Problems returned a year later but much stronger. So many symptoms related with gi tratct. Doctors said it could be gastroparesis or CIPO or both. Got diagnosed with unspecified intestinal dysmotility then gaslighted and dismissed in another hospital by doctors telling me it's psychosomatic and all in my head. That hospital admission traumatized me so much I barely looked for help since then. Since beginning of this year it got even worse, I lost lots of weight, my constipation got so bad to the point of taking laxatives to avoid a bowel obstruction, I was told by my GP it's probably some form of malabsorbtion due to my meds not working properly anymore. Procrastinating taking a referral to a hospital specializing in diagnosing and medical nutrition due to trauma. I'm also scared because I don't know what to expect, I want to have some picture of what could be the reason for my body acting that way.

Question nr. 3: Skin manifestations. I thought I had hEDS for a long time but one thing never really aligned with hEDS features. I experience extremely easy bruising and abnormal skin/tissue fragility. Bruises come from nowhere or appear after touch/pressure for example kneeling for a few minutes. My skin often tears and is very prone to wounds. Combined with my high pain tolerance I often catch myself not feeling anything unusual until I look on some part of my body and see blood. Sometimes someone points it out and I'm extremely surprised because I don't recall anything that could've caused it. I'm very prone to scarring as well. I get scars from the smallest cuts ever or even cat scratches (I have 2 cats). My scars are mostly hypertrophic and keloid which is also unusual for hEDS and never made sense to me. I'm conflicted about how BM or mEDS can affect skin. Some resources say it is not typical, some say it absolutely can happen. So what's the truth?

I know it's a lot of asking but possibility of this diagnosis is still "fresh" so I'm just trying my best to understand my symptoms while waiting for further testing and results. I lived with sureness of having hEDS for years and this is something completely new to me, I'm just trying to wrap my head around this. Not looking for advice, just trying to learn about all of this and determine what are the facts.

I'm building a simple page with comparison tables and having some annoying issues. Already fixed one with a help of an old post in this subreddit. Second one is: I need to use keyboard shortcuts to copy and paste text into different table grid. Using my right mouse button like you can usually do doesn't work. After clicking the page automatically scrolls up and highlits the first grid in the very first table on the top of the page. There's no copy or paste option in the pop up window so it's not even a scroll issue entirely but also notion not detecting other table grids than the first one on the page. When I use CTRL-C and CTRL-V it works just fine. Is there a way to fix this?

I'm looking for a wire that:

1. is not too hard so it can be shaped but hard enough to hold it's shape once it's bent
2. can be flattened with a hammer without struggling
3. on the more affordable side so no pure gold or silver
4. preferably hypoallergenic
5. comes in all sorts of gauge, need thicker one for wire based pieces and thinner for wrapping

I wanted to go for surgical steel to match other components but there's no thicker options and they're mostly silver. Heard about copper, brass, gold filled and some other ones. Which one is the best in your opinion?

I'm sure this question was asked before but I want to lay out my exact situation.

I DO NOT WANT KIDS! I'm 20 and I don't think I'll ever change my mind but that's irrelevant. I don't want kids not only because of my multiple chronic illnesses but many other factors as well. I've been with my partner for almost 2 years and I'm not on any birth control apart from condoms. I have crippling anxiety so every single time I panick I might be pregnant and I'm sickly tired of it. The reason I haven't gotten on any yet is because we are not doing that so often + I'm scared of possible side effects. Another factor is I suspect I might have PCOS or early stages of endometriosis. That kind of prevents my mind from acting before I figure this out - I know it's stupid. My constant struggle is what type of birth control should I take into consideration. We all know the side effects in healthy people but what about us with connective tissue disorders? For context I'm already struggling with depression and acne since I was like 12 so this getting worse is one of my fears. Many listed side effects are literally my everyday symptoms so would that get worse or just stay the same? What is the safest birth control for us? With least side effects? At the same time most reliable? I know that's a doctor kind of questions but as we all know women often get dismissed and I wanted to have some knowledge from fellow zebras first! So if you have any experience or successful stories feel free to share! Appreciate all the help :)

Do those two have correlation? I feel like they do but I don't know what exactly makes them overlap?

I've had bad gastro issues for 1.5 years now and they're getting progressively worse. I noticed my bladder not working as it should. It was always kind of working wrong (I had to squeeze my stomach really hard to fully empty my bladder) but now it's not only that but also I feel the need to pee but I can't or only a little bit comes out. So I can go a long time without peeing even though I've had lots of fluids.

I don't know if the key is in constipation or muscle movements or both. Even when I'm not constipated it still happens?

Is there a way to fix this or at least make it less debilitating? I'm waiting for a referral to get back to evaluating process and receive treatment/nutrition so for now I'm on my own.

(For now I'm diagnosed with unspecified intestinal dysmotility but doctors in the hospital suspected CIPO/GP)

I'm struggling with horrible insomnia and it's draining the life out of me. Usually I can't sleep because of pain, gi symptoms or simply because I'm exhausted but not "sleepy tired". For the past few months it's gotten so much worse. I have at least 10 days a month when I don't sleep at all, lots of ones when I sleep only 2-4 hours and the rest is my body forcing sleep on me so I don't die. Occasionally I nap during the day on days with no sleep but it's a rare event. I'm on prescription sleep meds that I changed multiple times because my body got used to each one. I tried melatonin and all of the sleep methods that people recommend (lights down before sleep, no screens etc). Nothing seems to help and I' m constantly in a survival mode. Before it was a few nights and you can survive on no sleep if it's occasional, but atp I AM IN HEAVY SLEEP DEBT. Even when I do sleep, I wake up frequently during the night and always feel tired in the morning. Luckily I don't work now but if I wanted to get a job again this is simply not going to work out. I'm trying my best to understand my body, what's the possible reason behind this? All of my ideas are just assumptions with no real remedy.

Is anyone of you in a similar situation? Do you have any unusual things that help you? I'm willing to try anything atp!

Many people are venting and sharing their negative experiences so I thought I could share some positive things to brighten up your day 🩷

I'm an ambulatory wheelchair user, I need it mostly for long distances but on bad days I use my chair whenever I go out. So far I've had very positive experiences. People often ask if I need help, they never grab my chair before I give them permission. My power assist run out of battery in the middle of the crosswalk and a nice lady with a dog offered to help me get home as the power assist is quiet heavy. We had a little chat, she was very kind! I got home safely and very grateful for the kindness. Didn't had an issue with public transport yet although it's pretty common for chair users. They are always kind, put out the ramp and help me get inside. Beside one time when the seat belt in the disabled spot was broken nothing bad happened. Actually there was a young couple and since the seat belt wasn't working I had to hold on for dear life and sadly didn't had enough strength so I was bumping into them. We laughed about it and this girl offered to put her foot against my chair and hold it in place. She did until I got out! Super grateful! One random guy helped me get into the tram without putting the ramp down and said "You're so pretty, I could drive you like that all day" It may be a little creepy but I took it as a compliment hah. Had many people help me open the doors and get inside when they saw I was struggling. I have an issue with opening them normally because they're heavy so I really appreciate the help.

So it's not always black and white, they are good helpful people out there!

My doctor said can't diagnose me with hEDS because they only do genetic testing and hEDS is a clinical diagnosis. Told me to make an appointment with one of the top doctors in my country which means lots of waiting.

Ordered another genetic test specifically focusing on the gene I got a VUS in. Blood draw on May 20th and again 2 months waiting for results. Also told me to go to a neurologist and do an emg and muscle biopsy because she suspects I might have Bethlem myopathy along side with EDS. They also wrote that I am possibly a carrier of Ulrich myopathy mutation so I have another solid reason to not have kids I guess...

I'm happy about the tests for myopathy as I have some muscle weakness that is slowly progressing but disappointed she can't diagnose hEDS and I'll have to struggle again eh...

She said that EDS & miopathy overlap is very common in mutations in my gene. She told me that it's probably not mEDS so that's good at least.

Didn't see that coming tbh and a perspective of having another rare disease with no cure scares me a lot. Especially because I was not expecting this at all.

Happy that my rare variant will get more testing though and could possibly lead it on the road to be reclassified as pathogenic. That could give more clearance to future people with that specific variant!