u/Avo_Alma

posted here a couple days ago qurstio about symtom. basically I’m in a really shitty situation. 100% bedridden due to mecfs, struggling with other chronic illnesses as well. i have lipedema everywhere and i mean in basically my entire body. it seems the chronic illnesses developing caused some explosion of lipedema tissue. my bmr is incredibly low i can’t eat on my own and food is generally an issue to due mcas. i have bigger problems ik the lipedema but im just seening the lipedema fat develop more in my body cuz of weight gain and idk what to do.

I don’t know how id loose weight and not become malnitrutitioned eveyhthing is just ugh.

im so severe i shouldn’t even be on my phone what is wrong with me….

very severe. i spend all my time on My phone atleast 7 hr screentime today even though i shouldn’t be on My phone. spent an hpur in notes app writing my feelsinf and writing poems to try and make this mean something . im useless at resting and i keep sabotaging for myself. two days ago i cried nonstop for hours. crashing. still can’t stop. og death doesn’t stop me idk what will . idk what to do anymore i feel

sö stupid pls help

Can you have lipedema tissue in the face? Now ik most sources only say it can be in the lower extremities and arms but i find that not to be true. I am in a very unique situation with my lipedema. I am 100% bedbound and unable to do any sort of exercise or anything due to severe chronic illness. One of my chronic illnesses is called mast cell activities syndrome, currently it is very uncontrolled which means my body is very inflammed and I’m having (mostly mild) allergic reactions almost constantly. The mast cells exist within the conmective tissue which i assume affects the lipedema as well.

Within the past year when i developed new chronic illnesses it seemed like my lipedema exploded everywhere. I just recently noticed it seems to be in my face too. The fat in My cheeks is very painful and strangly hard.(like the rest of my lipedema tissue) I don’t know what’s going on but i feel very sad about it. I feel even wprse about my physical appearance 

ignore all the spelling mistakes its very late and i am tired. thanks.

long story short I’m severely chronically ill, completely bedbound and unable to do much of anything at all due to severe symtoms and risk of relapse. I still have some use of my phone left but yeah. outer wilds was one of the last videogames I started playing before my health got worse. I didn’t finish it, I am like probably half way thrpugh story wise??? the not knowing and being unable to know is killing me. I don’t wanna google ts cuz yk then it’s over. I am gnawing at the walls of mu enclosure lol. like geniuenly I JUST WANNA KNOW THE ENDING I JUST WANNA KNOW EVEYTHIGN BUT DONT TELL MEEEEEE lol

I am fully bedridden because of very severe mecfs. I have noticed I’ve been gaining more weight lately which makes me feel shitty. looking to be more okay with it all cuz there’s nothing i can do to change my body/weight. I guess i just have to accept this new body that is very sick and changing in ways i don’t like. But idk how to do that. I also have lipedema and im scared of that getting worse.

I’m scared for what could happen if/when i gain back ability to go outside. Ik that’s a stupid thing to worry about in my situation but i still can’t let it go cuz society and fatphobia and all that. Afraid of being judged. Advice welcome.

posting here again I just feel like shit today. resting should be all I do, like literally all I do but I can’t for the life of me. I live on adrenaline I cannot put my phone down. any hope of ever regaining the ability to use my phone or do anything at all is incredibly far away. I’m rolling pem since forceverabd idk how to hope I’ll get out:

i feel doomed. worst is I’m truly trying my best. that’s why it feels like I’ll be stuck here foreve.

I am fully bedridden because of very severe mecfs. I have noticed I’ve been gaining more weight lately which makes me feel shitty. looking to be more okay with it all cuz there’s nothing i can do to change my body/weight. I guess i just have to accept this new body that is very sick and changing in ways i don’t like. But idk how to do that. I also have lipedema and im scared of that getting worse.

I’m scared for what could happen if/when i gain back ability to go outside. Ik that’s a stupid thing to worry about in my situation but i still can’t let it go cuz society and fatphobia and all that. Afraid of being judged. Advice welcome.

the docs want me attmitted, at first neurology unit, but they said they wojdlnt be able to acomedate me there. then it was Psych ward. to stay there while simoultaniosly doing a somatic evaluaction. The mecfs doc is still insisting on crashing not being that bad. they want me admitted for a somatic evanuation but i don’t have the energy i don’t understand what use it has. im not dying so idk why i should go to hospital or the Psych ward

min to tired to provide more conetxt. my parents think k need to be atmotted just to check everything but it feels useless. Im tired and i don’t want to be admitted i feel like it would do more harm than good even if i just get attmotted to hospital. I’d rather die than go to psych ward.

My mom has said shell do everything she can so that i won’t get admitted to Psych ward but she still thinks i need to be admitted for a somatic evaluation. so if there is no space in the neurology ward ig psych ward is where I’ll go cuz thats where the docs want me.

idk what to do or what to say pls help

I’m profoundly severe, can’t do anything without adrenaline. situation with doc is better now he atleast agrees on pacing, still on about sentizisation tho but i think thats a little bullshit. problem he has prescribed several meds that do help a littke but hard to tekl when crsah all the time. i think i would really benefit from benzos to precent some crashes ect but the doctor refuses because addictive. ill only take it a couple times a month. i think i might need it to stabilize its addictive so no prescriptuon. How did you go about getting Benzo? How does it help you? maybe i can convince my mom to advocate for me regarding this

is sentization real? especially within ME thank you, doctor is worried I’ll become too sensitive of i rest tOo much after i stabilize(which i haven’t yet at all)

title, i push though alot and do all that i don’t have energ for all the time even tho I’m profoundlu severe. using phone. talking sometimes. stuff like that. adrenaline for everything. i have autistic meltdowns alot but is that possible when I’m this severe? my mom thinks not, so she thinks i can’t be as severe as i am because of it. maybe she’s right idk. is it possible to push though to this degree or???

om trying to stop really really trying

im profoundly severe, everything takes adrenaline. i oberexpert constantl, i cant stop. That’s bad but even worse the me specialist said it was good for me to do things like sit up and to push myself to keep my body goin, even if i crash because ”its not dangerous to crash a little” problem is now my mom thinks this to, i show her the nice guidelines but she doesn’t understand. How do i make my mom understand that all i need to do is stablize and rest?? She thinks im different from other patients somehow cuz i have capacity to cry or argue but she doesn’t understand that i still crash from it.

i try to make her understand tell her that i just need rest but she listen to the doctor and idk what to do? How do i stabilse while being this severe?? how do i convince My parents it’s what i need

I’m 18, profoundly severe. I try to find hope but I can’t I feel like my case is too complicated for there to be a solution. I got sick due to multiple events, it was all gradual. Pretty much immediately I got covid to which made me close to mod/severe but I continued pushing through with school ect. Now In later months I went to multiple docs appt that made me profound.

I have mcas, I’m hypermobile(I don’t think it’s heds but) I’m pretty sure I have cci and there’s no care for that here…

Complicated case due to all of that but also the covid infection. All my neurological symptoms are hell and abilify didn’t help. I don’t see people in this patient group who improve often and that just makes me feel like I am doomed. my doctors even the ME specialist thinks that my severity isn’t actually as bad becsue the newer sensitivities is just functional stuff on top of the physical diseases and idk why…

ever since I got sick a year ago just steady decline, I want to belive there’s hope but I feel like My only fate is to exist in this half life. If anyone has advice ill take it.

the situation is very complicated, I’m profoundly severe and push through all the time when I do anything. my mom is very concerned and wants to have me admitted for groundwork somatic examinatio. the docs agreed to it, if I do get afmitted it will be at postinfektiösa mottagningen Hudding, I don’t think this is a good idea as the main doctor who will be in charge of the admission is from psych and probably doesn’t belive in me. The mecfs doctor has also said some concerning things and for some reason wants me to push though, he is under the impression that my sensitivity tp activity isn’t as severe as it looks and therefor functional even though I have a underlying physical disease. And even though people do become this sic.

it doesn’t feel like a good idea to be admitted but if I say no my dad will be very mad at me (he is abusive) my mom is betyer nd more receptive but I have no chocie but to be with my dad. scared they will sned me to a mental hospital instead or smth. the mecfs doctor wants me to break the cycle of sensitivity but hes supposed to be one of the best doctors in the country for this?? I don’t understand why he thinks part of it is functional… idk what to do. hope this isn’t too confusing so tired pls help

jist to clarify im pretty sure I experience pem from eating but so far I can eat a liquid diet okay. The doctor eill most likley refuse a feeding tube anyway. I’m still in tolling pem

there’s nothing for me. I exist in a hellscape withering away. im so severe I can’t even eat but I do anyway because I have too to survive while even the me specialist doc thinks it’s half psycosomatic. they will probably refuse the feeding tube even wjen k get admitted. im only eighteen and my life is tourture I try to hope but I can’t. it feels like I will never get better. maybe I will just wither like the flowers I haven’t seen for six months.

there is nothing

i just want to get better

if anyone has advice please im so tired

Im shit at pacing have been since I got sick, that combined with comorbidties going untreated and docs appts got me to profoundly severe. I crash constantly I can’t stop and idk what’s wrong with me. eating is hard now causes PEM I think but doctors wants me to keep the function of eating even tho it’s dreadful. I can’t pace now it’s panic all the time, I feel like my body is breaking down… my muscle is atrophyed to an insane degree I’m scared my body won’t b able to recover att all. that I’ll just stay in hell forever due to how bad of a condition my body is in. I feel like I am in hell forever. my only dream is they better but I’m sos scared

im profoundly severe but keep pushing for so many reasons. my life is hell over and over. im only 18 and yet this suffering is my life. Im hopeless . i want to think of a better future but it just feels like its all over, never gonna get better just over. keep crashing and it’s my fault just bullshit and guilt i feel so hopeles… is there hope? i want to belive