u/Mr_SpicyMayo

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.

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 could swim for about 1h - 45m before my body triggered in water does anyone else have a similar experience with em its at least a small win so i can exercise a bit compared to normally

I have erythromelalgia and even though I have already dealt with my lupus the pain and exhaustion still hit hard every day and it makes everything feel heavy and unreal. I am seventeen and graduated early but instead of feeling proud I feel stuck in this haze where nothing feels interesting or meaningful anymore. I always imagined myself doing hands on work like plumbing tech repair or anything where I can move think and actually do something but right now even the things I used to enjoy feel empty. I feel depressed worn down and unsure of how to move forward because the dreams I had for myself feel like they disappeared before I even got the chance to chase them

What can i do to regain my motivation for life cause i feel like i don’t have any anymore

I can barely walk for 5-10 mins on cold days before im in pain

I have erythromelalgia and even though I have already dealt with my lupus the pain and exhaustion still hit hard every day and it makes everything feel heavy and unreal. I am seventeen and graduated early but instead of feeling proud I feel stuck in this haze where nothing feels interesting or meaningful anymore. I always imagined myself doing hands on work like plumbing tech repair or anything where I can move think and actually do something but right now even the things I used to enjoy feel empty. I feel depressed worn down and unsure of how to move forward because the dreams I had for myself feel like they disappeared before I even got the chance to chase them

What can i do to regain my motivation for life cause i feel like i don’t have any anymore

I can barely walk for 5-10 mins on cold days before im in pain

I have erythromelalgia and even though I have already dealt with my lupus the pain and exhaustion still hit hard every day and it makes everything feel heavy and unreal. I am seventeen and graduated early but instead of feeling proud I feel stuck in this haze where nothing feels interesting or meaningful anymore. I always imagined myself doing hands on work like plumbing tech repair or anything where I can move think and actually do something but right now even the things I used to enjoy feel empty. I feel depressed worn down and unsure of how to move forward because the dreams I had for myself feel like they disappeared before I even got the chance to chase them

What can i do to regain my motivation for life cause i feel like i don’t have any anymore

I can barely walk for 5-10 mins on cold days before im in pain

For others with EM — does anyone else not flare every time? Are you able to take hot showers or sleep under blankets without it triggering most of the time? Mine isn’t consistent, and when it does happen it’s usually pretty bad, which is starting to make me paranoid.