u/backwat3rgirl

i got approved for SSI last year with less medical info. now they're saying they don't have enough to determine if im disabled and need me to attend an exam. there is a telehealth option but i cannot speak due to very severe ME/ CFS. my parents speak for me at medical appointments bc of this. im completely bedbound and cant do anything including any and all ADLs. i don't understand what's happening or why my medical records would suddenly not be enough anymore when i have more diagnoses than last year. i have very extensive medical records. i applied for physical disability but included my mental health conditions on the forms. i don't have a lawyer. i don't know what to do. i cannot lose my payments and medicaid. any advice is appreciated

i’ve had the fitbit inspire 2 for about 4 years and ever since they switched to google health it’s basically useless. i’m looking for a replacement that will track my sleep and heart rate and help with pacing. the visible armband is outrageously expensive and the subscription program feels pretty exploitative to me. the other one i’ve seen highly recommended is garmin, but they look so bulky, especially since i’m used to wearing a fitbit. does anyone have alternatives that have worked for them?

i know repressing emotions/stress is bad in general, but feeling them can cause me to crash - they’ve been the main source of my deterioration actually (mostly emotions triggered by outside stressors). i’m obviously extremely sad, angry, and scared about my condition and loss of function, and i’m not sure if it’s more harmful to allow myself to feel these things or not. when im in PEM my emotions are uncontrollable, but now that my baseline is settling i just don’t know what to do. i’ve been repressing like my life depends on it, and it probably does unfortunately. i can’t do therapy because i can’t talk and i can’t risk starting any new psych meds bc im super sensitive to almost all of them and could cause another crash. any advice?

i’m very/extremely severe and eating is starting to cause PEM. i have to lay down halfway through and struggle to get 1000 calories a day. my GI has mentioned it i’m just so scared of having a surgery and the infection risk

i probably know the answer to this, but are there any resources in the US for addiction that are safe for ME patients? i’m severely dependent on weed and benzos to deal with physical and mental issues and it’s making my mental health so much worse. i had a severe benzo addiction in high school and this feels like a full blown relapse. i feel like i need to go to rehab but im mod-severe so thats not an option for me. i also don’t want to talk to my doctor because i do genuinely need benzos for my symptoms sometimes. if i tell them about addiction they’ll stop prescribing them completely

other than medications, does anyone have any tips for getting through panic attacks when you’re severe? when i get to a certain level of panic i cannot stay still which obviously backfires on me big time. i have to get up and keep myself busy until it subsides and i can’t pace when im running on pure adrenaline and not thinking about long term consequences. it really sucks because i was just having a breakthrough with the crash im in rn and then had a 30 minute panic attack before deciding it was worth it to take my rescue meds. i guess we’ll see in a few days how bad it got me lol. i’ve dealt with this my whole life, some of my earliest memories are panic attacks so i’ve tried most of the typical techniques but my options are limited when im in a crash.

i use a fitbit to track my heart rate and saw mine got down to 38 while i was asleep today. i have a low resting heart rate in general so it doesn’t necessarily shock me but it does put me a bit on edge. i’m severe so obviously not doing any cardio or exercise in general. i’ve had holter monitors and everything and mentioned it to doctors before and they said not to worry unless it’s sitting in the 30s but it still worries me a little. anyone else?

this is mostly directed towards people who have had long hair most of their life/have an emotional attachment to their hair. i think im going to need to shave my head because i can’t take care of my hair anymore and i have very mixed feelings about it. i have long-ish curly hair and it’s been a big part of my identity my whole life. i anticipate being treated much differently by doctors/people in general if i go through with it as well. im very worried about my doctors in particular seeing this as an indicator of a mental health problem. i’m so torn, i know it would feel amazing and save me so much energy but im terrified of the social consequences (i live in the deep south U.S. for context)

i am also nonbinary and i’ve always wanted to shave my head (i present no different than an average cis woman rn) but i would’ve loved for it to be a step i take because im ready to and not because i have to. it’s definitely an internal battle as well, there’s a lot of factors and i feel almost vapid for not just doing it without a second thought.

any similar experiences or advice?

can you combine 12.5mg seroquel IR and 0.5mg klonopin or is that too sedating? i have a fair tolerance to benzos so i dont feel much from .5mg, im trying to taper off rn but still dealing with insomnia and want to take my seroquel. i cant get in contact w a pharmacist rn so im just wondering if anyone’s taken this combination and been alright. im 5’3F 110lbs for reference

i don’t know what i’m doing wrong, i’ve been resting as much as i possibly can and im still getting worse. i’m so scared and i don’t know what to do anymore.

i’ve heard it can improve hypermobile EDS patients because it strengthens ligaments but i’m curious how it affects ME. i’ve been considering starting for a while due to dysphoria and the possibility that it could help would be the push i need. i also just want hope that something could help me at all. feel free to respond if you’re taking it for reasons other than dysphoria as well!

they are the only thing that helps my symptoms and prevents me from crashing further but this crash has lasted over a week already. i got sober from them when i was 17 before i knew i had ME. now 20 and severe and it seems like the only way i can get proper rest and relief from PEM

does anyone have body wipe recommendations? i ordered some but realized they were antibacterial which i know you’re not supposed to use frequently bc they can cause antibiotic resistance.

i’ve been in a crash for probably the past week and continued pushing myself because i would have moments after resting where i felt better and thought i’d be able to do things. now im dealing with weakness, flu-like symptoms, dizziness, brain fog, and sensory sensitivities. i know i just need to rest but it’s really hard to get real, restorative rest when i’m so scared i wont improve. i always tend to jump to the worst case scenario when i’m in PEM. i’m trying to focus on the positives - i can still eat, walk to the bathroom, and tolerate using my phone even if i maybe shouldn’t be doing those things.

the only thing that helps my symptoms is klonopin (most likely bc it’s a mast cell stabilizer on top of helping anxiety) but i’m already relatively dependent on it and don’t want to get worse. i have a major history of addiction. i’m also wondering if taking sleeping meds during the day and just forcing myself to sleep would be beneficial or if that’s a bad idea.

does anyone have advice or words of encouragement? anything is greatly appreciated

i’ve tried rebooting the device multiple times, deleting/redownloading the app, and restarting my phone but nothing seems to work

sometimes i feel like i look down on or feel superior to my partner. i obviously don’t know if this is actually true or if it’s just ROCD taking the wheel. we have been going through legitimate problems as well and i can’t say the resentment that’s come from that doesn’t play a role in how i view them. i definitely see myself as less at fault and subconsciously place myself above them in this weird sort of hierarchy in my brain and i really don’t like it. sometimes i feel “too good” for them. the tension is without a doubt mainly coming from issues on their end, but i certainly am not without fault. i find it hard to not think this way when i’ve been hurt/wronged, i think it’s probably a sort of defense mechanism. i just want to feel like an equal and not above or below them.

does anyone else struggle with this and have any advice?

does singulair help brain fog at all? i know it’s meant for asthma/respiratory issues but im wondering if it helped anyone in other ways. i’m just scared to start it bc of the possible emotional side effects and i want to know if it’s been worth it for others, brain fog/fatigue are by far my worst symptoms

is there anything ME/CFS related that can cause extreme shifts in mood? out of nowhere a few days ago i started feeling extremely suicidal. i’ve struggled with ideation but promised myself nothing would ever come of it no matter how bad it gets. it’s so unlike me to feel like this which makes me think it has some sort of a physical cause. the only thing that changed was i took cromolyn for a few days which caused me to feel like this, but it didn’t stop when i discontinued. i know if i tell a doctor i think there’s a physical cause for my suicidality they’ll immediately dismiss me. of course i’ve felt down due to having this condition, but a switch has never just flipped like this overnight before. i’ve also been in therapy/medicated most of my life so there’s no undiagnosed mental health conditions or anything.

has anyone experienced something similar?

i took 3 doses of cromolyn before stopping because it made me extremely suicidal and feel like i was losing my mind. it’s been a couple days since i took my last dose and this feeling still hasn’t gone away. it’s very unlike me to feel like this and i’m scared that i permanently messed up my brain from taking it. i know that’s an extreme assumption i just don’t really know what to do bc if i tell any doctor that i don’t think they’ll take me seriously. i’ve been in therapy/medicated most of my life so i don’t have any undiagnosed mental health conditions or anything

i was told to take 3mg of doxepin by my psychiatrist, but she said insurance will only cover 6mg so i have to split it. i picked up the meds and there’s no line down the middle which i know usually means they’re not meant to be split. should i ask my pharmacy before trying or is it just a bad idea?