u/Mr_SpicyMayo

Hey there. So I’m dealing with a family that loves to compare me to other people with EM, even though EM varies quite a bit between each person. I am currently 17, and my mom and other family members continue to say things like “You can work,” or “You know, there’s someone I was reading about who has EM and they work.” I’m still in the phase of trying to find medication that works for EM. I also have lupus too, but that’s a whole different ball game. It is in remission, but it still activates with heat and movement, basically a double whammy. I’m just curious why my family has to be like this, because it really hurts. They don’t understand that they constantly say things like “You’re at the age where you can work,” or “You can do this,” or “This person did that, so you can too.” It’s so annoying. I know they are still figuring things out, but it’s really painful. They ask me why I can remember the things I want but can’t remember simple tasks. My answer to that is honestly I’m not sure how. I kind of just zone out and work, but I get fatigued and often overwork myself constantly. How do I get them to stop before they push me over the edge? I’m super sensitive about basically everything, and honestly I don’t really care about anyone else’s stuff as much anymore. I mostly only care about myself. I just wish that they understood, but they don’t, and it sucks. What can I do to make them understand? Because they don’t. They make me feel like a burden. My mom said today, “We give you food, buy you what you want, do little and big things for you, so why can’t you watch the dogs for me?” I will admit it is her birthday week, but I’ve managed to forget about it every day. It just disappears. I hate my memory. Is it bad that I want to kill myself just so I don’t have to be a burden? I honestly haven’t been thinking about suicide a lot, but it feels like something I should do because I really don’t have any value. I am trying to start a business, but I have a feeling it will flop. I’m just unsure what to do. I know that everything I have and most of the things I’m given are things a lot of people don’t have, but I really don’t want to be here. And it’s weird because I’m at a point where I’m happy enough to not think about suicide anymore, but anything that annoys me makes me think about it. I just don’t understand myself. I know this type of behavior is selfish, but being selfish is all someone like me has in times like this. Can I please get some help with this? I’m genuinely curious what everyone’s thoughts are. Am I just being a spoiled crybaby, or am I just doing what depressed people do? I’m so confused. I really don’t understand myself anymore. I wish something would end the torment that comes with being alive. I want someone to end me because I know I cant I JUST wish i could be like Asta from the black clover or just someone who people wanna be like but i cant i just want to leave man im so done

I’m currently a 17-year-old male dealing with two major chronic illnesses: lupus and Erythromelalgia. I honestly believe that Erythromelalgia (EM) fucking sucks there isn’t anything good about it. I’m struggling right now because it feels like people think I can do so much more than I actually can, and they get angry or annoyed because they don’t believe this is my limit. I think they’re still used to the old me, but it hurts, man, because they have these expectations and hopes for me.

My mom wants me to be successful and have a good life, but I sadly don’t think the “good life” part is possible anymore with the way things are going. I don’t understand why they can’t see that I just can’t do as much or basically anything anymore without triggering symptoms after a bit. My grandma seems to think I can do way more than I can. I’ll admit I can sometimes, but there are major consequences when I do, like extreme fatigue for the next few days or just constant soreness.

I also have memory issues that confuse me because I can remember some things well, but I forget almost everything else. I’m currently starting a small computer business to resell used PCs for good prices because I love PCs, and it’s something I’m still somewhat able to do. But even then, I cleaned a PC for about four hours and I’ve been completely beat for like two days afterward.

Is there any way I can show them how I feel? I explain it to them, but they always say they want better for me and are just pushing me. I know they mean well, but it hurts. I just wish they understood. My grandma says if she had what I have, she would “just work,” but… do you understand the pain that EM carries? It hurts so bad. I feel like they underestimate EM and how truly debilitating it is.

Are there any solutions y’all recommend or am i fucked

All for 60$ you all said it wasn’t possible mwaaa hahahahaha

- 1060 3gb
- i5 4690k
- 16gb ddr3 1600mhz
- 250 gb sata ssd

Theres also a case, psu, cooler and mobo and a few other goodies
Still running stress tests will update soon

Im currently running a GIGABYTE Radeon RX 9070 XT
Which i got for 650 i haven’t had any issues with it other than drivers or adrenaline being finicky af I’m really enjoying the card and I’ve had it fr about 5 months maybe a bit less. Prior to that i had a Gigabyte Radeon RX 9060 XT I’m confused why they get so much hate cause i love comparing the hate of each brand its so funny reading comments

Erythromelalgia made me not be able to walk my grandma down on my moms wedding and now i feel like shit literally and mentally this shit sucks ass

Is blotchy redness all other arms and legs from em i have em in my feet chest hands and face i also have lupus could i be having a lupus Em Reaction to high stress i had a testicular torsion scare ive had 1 before and lost a nut and when the 1 i had now started hurting today it sent me for a loop think i almost had a heart attack went to Emergency room

I'm 17m and I'm not okay anymore. I'm not sure how long I can hold on. I've had Em for about a whole year, maybe a bit longer and I'm falling apart. I feel like the cheese inside of a grilled cheese when you stretch it apart except I'm at the part where the cheese gets thin and starts breaking I don't feel like me anymore i know i shouldn't share this with everyone here because most likely all of you are suffering as well i must say I also have lupus even though it's in remission it's still a pain in the ass and it's something that adds onto the Em It causes Issues like Swelling joint pain muscle pain fatigue Etc. most of this is also triggered by heat 

I am currently at a point where I believe I may be starting to lose it. I think I may be borderline psychotic or perhaps at least mildly crazy. My dreams have been very bad lately. I think they may be influenced by my mental health.

I share this with y'all as I hope that this can be seen by y'all and maybe garner some sympathy. I'm going to start hard but it's true. I currently have daily urges of wanting to KMS at least twice a day or more. I know that I am unwell, but I worry that sharing my story or at least the full story with those that love me will change how they see me and they may call 911 or 988 so i don't tell them everything.

So far, I have told my mother that I've had thoughts about overdosing and about how I'm always sad and depressed, but I haven't told her much more than that. I do not want to tell her everything because I do not wish to stress her out more than she already is. She has a wedding coming up soon and she works a good bit.and she manages other imploye i dont really do much with my mom any more because If I move my arms, legs or any part of my body too much it can cause the Em to trigger which also causes my lupus to trigger in a weird way. I try to go to places like goodwill for fun but I still trigger there and I push myself too much which always saps my energy and I'm always sleepy after going to a few.

I try to go to places like Goodwill to keep my mind occupied. It honestly doesn't work well. But I'm so done that it at least gives me something to do. I don't have any friends, a GF, a job or any dreams anymore and I can feel myself fading into something eviler and I'm scared.

I just wonder why me why not someone else. I know it's selfish, but this is too much. I can't do this for much longer. I have everything most people would want a pc a house a home a dog a loving family but i don't have the ability to move without eventually being in pain sometimes the pain is super super bad to i basically just eat for joy now I lay in my bed waiting for death praying something or someone will kill me because I'm too weak to kill myself I'm so gone i can barely play games which use to bring me great joy now i barely play on my pc anymore i know i may sound spoiled rude or maybe even crazy but I'm sorry Em has destroyed me its changed me into something i cannot recognize anymore 

I ask for so much now because it gives me joy to have new things, new items. But i always feel bad as I wish I could support myself but i can't because I'm so broken physically and mentally. Ive Considered asking my mother if it was okey if i didn't go to her wedding but idk i just wish that i could support myself support my dreams but i cannot anymore because im to mentally unwell so lost so gone i zone out so much so so much my memory is that of a goldfish so i cannot take care of my medical and my mother has to im a fool no im worse than trash i just wish i could help instead of being useless garbage and actually help those around me like they help me but i cannot.

I'm done for now ive forgotten the rest of what i wanted to say thank you for reading my scrambled madman writings i thank you for listening to me and this may be the last text i send for a while or maybe forever

I’ve been writing in a diary because I forget the pain, lose my sense of myself, and lose the overall feeling of what I’m going through. I like expressing how I feel, but I can’t always do that out loud, so I’ve been using a notebook. It doesn’t really help, but maybe someone would find it if something ever happened to me or if my conditions got worse.

There aren’t any therapy places available, and I’m just unsure who I am anymore. I feel myself changing becoming more selfish, more unaware, more mentally unstable. I need friends, but I’ve never been able to make any. I never fit in, never had the energy. I feel like a sack of potatoes… no, worse, because potatoes are useful. I feel useless, tired, sick.

Maybe my mind just can’t handle the complications of having both Erythromelalgia and lupus. I don’t know if I’ll ever be able to support myself or survive on my own. I wake up, play games, sleep over and over because EM has taken my dreams from me.

I want friends who don’t pity me, who understand me, who actually take time for me even when I can’t always give the same back. I feel selfish because if I’m not, I get sad. I ask and never give because I feel like I have nothing to give just emptiness and fake empathy. I feel broken and tired.

I wonder if I’ll ever feel understood, or if I’m truly selfish or broken or both. Maybe I’ll become something more someday… but most likely I won’t. I’m 17 and already feel like my life is over, even when I push past the pain and the urge to do nothing so my EM doesn’t trigger.

I graduated, but I’ve realized I might not be able to use it because of all this. I’m so tired, so sleepy, so done. I just want someone or something to make it stop, even though I know people love me I just can’t feel it the same anymore. I bury my feelings because I don’t know how to use them.

Been really confused lately. I can’t tell if things are changing because the weather’s getting colder, because my meds are doing something, or because I’ve been breathing really slowly and paying closer attention to when I’m about to trigger. I’ve actually been able to stand for much longer before anything starts. For me, the warning signs are when my skin gets hotter and red, and then those waves of pain start building.

It’s confusing because I don’t know if I’m adapting to my condition or if the meds are helping. Honestly, I don’t think they are but I’m still hoping. I also don’t know if this improvement is just because I’ve been monitoring myself more carefully and controlling my breathing. I breathe so slowly sometimes that I get lightheaded if I push it too far.

Maybe this is progress. Maybe I really can live my life a bit more. Or maybe it’s nothing. And of course, while typing all this, my feet triggered just from sitting criss‑crossed 😭

I hide my pain a lot, especially when it’s not “bad enough” to complain about. I’m going out with my grandma today, and I’ve been dealing with EM, but I’m trying to get out of the house so I don’t go insane. It sucks that people think this is my normal, because it’s not. I try not to move much since it causes sharp pain and a ton of discomfort, and lupus makes everything worse.

I just don’t know how to explain to my family that this isn’t my normal, even though it feels like they think it is. It also feels like they think I only go out when it’s about me which is kind of true, but only because if I don’t get out sometimes, I start to mentally break down from being alone for so long doing nothing except gaming.

https://preview.redd.it/lhgxr79u74ih1.png?width=2408&format=png&auto=webp&s=b6919031c72dc29bdaaeba6e3d3bdbe536aba4a2

There is another row of frogs behind me

for this Hey! I'm currently setting up a community for people who have both erythromelalgia (EM) and lupus. I recently made a post asking for name ideas, but this one is different I'm looking for feedback on the community itself. I noticed that erythromelalgia doesn't get talked about much in the lupus community, and lupus doesn't get talked about much in the erythromelalgia community. I wanted to create a space where people living with both conditions can connect, share experiences, and support one another. I'd really appreciate any suggestions on what you'd like to see in a community like this. Whether it's resources, discussion ideas, rules, or anything else that would make it more helpful especially from the lupus side of things I'd love to hear your thoughts. Thanks! :)

I'm currently setting up a community for people who have been diagnosed with both erythromelalgia (EM) and lupus. I feel like lupus doesn't get talked about much in the EM community, and I'm hoping to create a space where people like me can connect, share experiences, and support each other through the challenges of living with both conditions.

I was wondering if anyone has ideas for things I should include on the community page, especially for the EM side of things. Are there any discussion topics, resources, or features you'd like to see in a community like this? I'd really appreciate any suggestions!

Im so close to giving up

Basic info about me: I’m M17, I have Lupus and Erythromelalgia , and I’m starting to lose it. I feel like my life is worthless, and I’m struggling to keep going. I’m just unsure how to keep going when I feel like I’ll never achieve anything. I can barely move without causing flares after about 10–20 minutes, and I feel like I’m no longer a member of society. I’m so lost, tired, and upset about my current situation that I don’t know what to do anymore.

I have a loving family, but I still feel alone, stuck, and trapped inside my own body. I just want someone to be here for me — someone who understands and loves me. I don’t know what I’m supposed to do with my life when everything I wanted to do is failing and fading away.

I don’t want to hurt myself or do anything harmful, but I just want to die. I want someone to end my suffering because I have too much to lose, too many people who would suffer if I did. But I can’t do this. I need someone or something to fix me because I’m so done.

I don’t have a job, money, or anything that would let me live on my own or support myself financially. Because of all this, I feel like a failure and a loser. Every happy movie I watch makes me even more unhappy. I can’t do this. I constantly feel like I want to cry. I want someone to help me, but they can’t, because nothing is working.

I just wish I had income so I could have fun and enjoy life even a little more. Right now I’m tired and done. I honestly just want money so I can buy tech and fix it, so I have something to do. But I’m lost. I’m so lost. I’m tired. I’m so tired. Please, someone help me.

Basic info about me: I’m M17, I have Lupus and Erythromelalgia , and I’m starting to lose it. I feel like my life is worthless, and I’m struggling to keep going. I’m just unsure how to keep going when I feel like I’ll never achieve anything. I can barely move without causing flares after about 10–20 minutes, and I feel like I’m no longer a member of society. I’m so lost, tired, and upset about my current situation that I don’t know what to do anymore.

I have a loving family, but I still feel alone, stuck, and trapped inside my own body. I just want someone to be here for me — someone who understands and loves me. I don’t know what I’m supposed to do with my life when everything I wanted to do is failing and fading away.

I don’t want to hurt myself or do anything harmful, but I just want to die. I want someone to end my suffering because I have too much to lose, too many people who would suffer if I did. But I can’t do this. I need someone or something to fix me because I’m so done.

I don’t have a job, money, or anything that would let me live on my own or support myself financially. Because of all this, I feel like a failure and a loser. Every happy movie I watch makes me even more unhappy. I can’t do this. I constantly feel like I want to cry. I want someone to help me, but they can’t, because nothing is working.

I just wish I had income so I could have fun and enjoy life even a little more. Right now I’m tired and done. I honestly just want money so I can buy tech and fix it, so I have something to do. But I’m lost. I’m so lost. I’m tired. I’m so tired. Please, someone help me.

Hey, just wanted to get some opinions. I’m setting up a community for people who have both EM and lupus. I think this name looks good, but I’m open to feedback:

DualDiagnosisEMLupusCommunity
DualDiagnosisEMLupusGroup
DualDiagnosisEMLupusSupport

ErythromelalgiaLupusSupport
ErythromelalgiaLupusGroup
ErythromelalgiaLupusCommunity

Open to other names tho (:

Hey, just wanted to get some opinions. I’m setting up a community for people who have both EM and lupus. I think this name looks good, but I’m open to feedback:

DualDiagnosisEMLupusCommunity
DualDiagnosisEMLupusGroup
DualDiagnosisEMLupusSupport

ErythromelalgiaLupusSupport
ErythromelalgiaLupusGroup
ErythromelalgiaLupusCommunity

Open to other names tho (:

For context, I have this weird habit where I need to know where all the good loot is before I commit to a serious playthrough. 😂 Because of that, I usually do 2 or 3 basic runs just to learn the map, figure out the mechanics, and find the best loot locations. Once I feel like I know the game well enough, that's when I start my "real" playthrough the one where I'll probably sink anywhere from 500 to 1,000 hours into building an amazing world and taking my time with everything.

So far, I've been having a blast with the game. The only thing that really drove me crazy at the beginning was the water... it definitely got on my nerves for a while. 😂

I'm also super excited to get back into using drones. If you set them up correctly, they can automate so much and make life a whole lot easier. I can't wait to get to that stage again and really optimize everything.

Just looking for people dealing with the same stuff I am. I’m 17m, and it already feels like most people don’t really get me. Having lupus on top of that just makes everything harder. I’ve had lupus since I was around 9 or 10 — it’s been long enough that I’d have to ask my mom.