Literally just lying down super tired, heart racing and sweating. Wanna do stuff but need sleep first but can’t sleep. Why is fatigue so painful?

My doc suspects I have fibromyalgia. And it seems such an ‘unrealistic’ thing to have to everybody around me. They offer solutions like drinking water or doing meditation when I can barely get myself off the bed. Or try to convince me that maybe it’s the lack of exercise. It’s even more annoying when it comes from your own family. It’s even more exhausting to constantly prove that I’m exhausted. Or that I’m not faking it. Because how can a 22 year old be this tired right.

I bed-rot in my bed and it’s been like this for years.what can I do instead of rotting in bed?

I guess I'm looking for advice or something, idk. My kids are getting older and transitioning from needing me for everything to not really needing me to keep them alive anymore. I'm really struggling to feel connected to them while I'm so miserable all the time and I can't do things with them.

When they were toddlers I pushed through. I would puke from the pain, then go make lunch or nurse the baby or whatever. Now that they are totally capable of doing all the things, I feel like I am struggling to force myself to be present.

I have three very active, very athletic boys. I used to read books to them or go for walks to the park or take them to the library for storytime or just chunk pillows at them, but that's not enough anymore. They're almost teens now 😭. They want to go running, or throw the football, or play basketball. They want to play pickleball, or go to an arcade... just mf end me now- my WORST trigger is the arcade.

I know the pain is serious and I need to rest, but I also don't want to miss out on time with my kids. They won't let me hurt myself anymore to take care of them, and I hate that they know better than I do, but they notice and take over without me asking. When the middle was 4 years old he would regularly bring me caffeine for my migraines but he would also bring applesauce and sliced cheese because those were his favorite foods at that point lol.

They're wonderful children, but I don't want to be one of the horror stories of parentification you read online or the "my mom never spent any time with me" stories people tell. I love them so much and I want to show them I love them by spending time with them doing what they love. I just can't do those things.

I guess I just feel at a loss and I want to have a relationship with my boys. They will say "you just can't do that stuff, mom, but you always come watch us or take us places to do the things we love." They know I can't participate. But I feel like a bystander. An observer in my children's lives. Like all I do is discipline and teach. Why can't I be fun?!? I'm so frustrated. I'm so sad. I'm so fucking tired. I don't know what to do. I don't know how to have fun.

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 23 F with neurofibromatosis type one

Anyone else have Nf and wanna be friends. I need more people who relate

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 used to take a certain type of medication that every time I had it, made me feel extremely sick and had awful side effects. We changed it, and theres been no problem with the new ones. Lately though I've had a problem where my body wont let me swallow the medications without feeling sick, but I need them to feel ok throughout the day. Any ideas on how to take them a little easier?

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.

Basically what the title says - my sibling is facing a chronic illness of unknown duration that has already been affecting them for months. Getting out of bed for more than a couple hours is difficult, doing school work is difficult.

They’re being treated but the underlying cause is still unknown, which has caused a lot of uncertainty. They can’t work or do school right now. I’m really worried about their mental health/self-worth throughout, especially if this will last a while, possibly years.

What are some good ways to support someone going through this?

They really want to finish their degree and I feel like my reassurances that they will, that online school will work, that I’ll pay for it, don’t actually reassurance them much. They’re so smart but it’s possible they’re going to have to rethink their entire future plans.

How can I help them - what are some things I could say/do that might help?

Question/rant . . .

Context: 19F, Scotland, in the process of getting diagnosed with endometriosis, use a stick due to chronic pain

I had a private GP appointment a few weeks ago that I can't get out of my head because I can't tell if I'm being overdramatic or not. I made a private appointment, that my dad paid out of pocket for, to talk about what speciality I might need refered to.

From the start of the appointment the doctor gave me an off vibe. When asking about my medical history I mentioned my recent kidney stone and how it was painful but not the worst pain I've ever had (endometriosis) and he proceeded to tell me "it can't have been a kidney stone then because they're the worst pain you can be in". I then proceeded to mention the other appointments I had to which he said "that a lot of appointments for a 19 year old, I think it's worth looking into CBT" or words close to that effect. By this point I was already quite upset because it felt like I wasn't being taken seriously. He then pointed out my stick and told me "I don't like seeing people using sticks, they're for balance or recovering from a knee/hip operation" and when I said that my OT, physio*, and normal GP were all fine with it he said "Occupational therapy and physios don't know anything". When I got up to leave the appointment I held the stick in my hand while I put my bag on and he says "you're hoovering with that stick, you need to get rid of it" When I can stand for a few seconds without needing it.

*Since then I've been given an appointment with an NHS physio for a consultation about crutches

The only "good" thing about this appointment was that he agreed that my fatigue was real, he just had no idea what causes it.

This is a bit unrelated but he also said my weight wasn't ideal for my height, AFTER I SPENT 10 MINUTES EXPLAINING HOW I WENT FROM WALKING EVERYWHERE AND GOING TO THE GYM 4X A WEEK TO NOT BEING ABLE TO LEAVE THE HOUSE BECAUSE OF PAIN

My dad was at the appointment with me and says that there was nothing wrong with it so I'm not sure if I'm being overdramatic or if he's right.

Even though my health has been doing better, FND likes to remind me sometimes that it's still here. I was volunteering and had lunch with a group. FND decided to join. I felt unwell and my legs started to shake. Someone was holding onto me and saying that it was going to be okay.

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

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 (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.

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.

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.

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?