Looking for others with chronic pain who understand

[littleearthquakes]

Hey all. I'm new here, though I've been a lurker on and off for a couple years and have read through the handbook etc. I've been disabled and chronically ill with severe illness and pain since childhood. I'm also mentally ill and autistic, so that's complicated things too. I was gaslit about my symptoms for decades, told it was just anxiety or my anxiety was making me sick, victim blamed, felt so scared and alone. Finally found out this is a common female/AFAB experience and was finally diagnosed with a bunch of conditions including EDS, POTS, MCAS, and ME/CFS.

I developed a debilitating jaw condition last year that's made me lose so much weight I'm almost underweight now, can barely speak or eat, the pain is unbearable. I also have chronic migraines, stomach pain, GERD, neuropathy, pelvic pain. Too much to list but my entire body is basically fucked. Everything I do hurts me. I'm so sensitive to everything. I can't do any normal stuff anymore and just try to rest and limit things as much as possible to prevent pain so basically have no life or fun anymore ever. Even when I do nothing it hurts.

People just really do not get it. I think my conditions might be slowly killing me. My vision's been getting weird. My stomach's not working right. I don't trust doctors and still worry about COVID and doctors never help and are shitty about masking now so I just do what I can for myself and these conditions don't have proven treatments or cures anyway. I wish there was an option for a safe and accessible way I could end this but there doesn't seem to be, though I'm continuing to research.

Right now what I'd appreciate most is connection. No one in my life can hold space for when I want to talk about how serious this is and how much I want to be done. It's been so hard to feel alone and I'm looking for friends who might get this. Feel free to reply or DM.

 

[fantastic_unicorn]

It's awful. I'm sorry you're dealing with this. Sucks cause I want to live but can't deal with the sickness. In the same boat. Hugs

 

[iloverachel]

I am so sorry you are going through all of this that sounds truly terrible
I don't have chronic pain myself, just mental pain but i have friends with chronic pain and from what they tell me its awful and debilitating

 

[ihateearth]

Hey all. I'm new here, though I've been a lurker on and off for a couple years and have read through the handbook etc. I've been disabled and chronically ill with severe illness and pain since childhood. I'm also mentally ill and autistic, so that's complicated things too. I was gaslit about my symptoms for decades, told it was just anxiety or my anxiety was making me sick, victim blamed, felt so scared and alone. Finally found out this is a common female/AFAB experience and was finally diagnosed with a bunch of conditions including EDS, POTS, MCAS, and ME/CFS.

I developed a debilitating jaw condition last year that's made me lose so much weight I'm almost underweight now, can barely speak or eat, the pain is unbearable. I also have chronic migraines, stomach pain, GERD, neuropathy, pelvic pain. Too much to list but my entire body is basically fucked. Everything I do hurts me. I'm so sensitive to everything. I can't do any normal stuff anymore and just try to rest and limit things as much as possible to prevent pain so basically have no life or fun anymore ever. Even when I do nothing it hurts.

People just really do not get it. I think my conditions might be slowly killing me. My vision's been getting weird. My stomach's not working right. I don't trust doctors and still worry about COVID and doctors never help and are shitty about masking now so I just do what I can for myself and these conditions don't have proven treatments or cures anyway. I wish there was an option for a safe and accessible way I could end this but there doesn't seem to be, though I'm continuing to research.

Right now what I'd appreciate most is connection. No one in my life can hold space for when I want to talk about how serious this is and how much I want to be done. It's been so hard to feel alone and I'm looking for friends who might get this. Feel free to reply or DM.

I'm very sorry. It sounds like hell. Chronic pain is so hard for others to understand. No wonder you may want to die. Neuropathy isn't easy to treat from what I've heard. My hands and forearms and neck are on fire and hurt with movements and spasms at times daily. They don't know what the cause is and some downplayed my pain too. A doctor once refused helping me due to my age.

I'm not closer to finding out what it is and what they thought it was but I have to work and help family. Because people can't visualize pain they may not believe it. I can't lift much and hold things for long periods. I use software to type easier. I hate my life and it's getting worse without knowing what it is. Death means no more if this.

I'm on a medication called Topamax for migraines and more but it's impacting my vision. I wear glasses to help. Topamax does help me. Nothing helps for the pain and limited motion in my hands fingers and arms now. It's numb pins and needles with constant throbbing pain. I use them less to make it hurt as less as I can. Soon I may not be able to work. I do what I can since I need money, but I don't know what's going to happen.

If you'd like a friend I'm here to just listen. I don't have the things you mentioned but I'm tired of being in pain with no answers and having to get up every day to a life that sucks. I hope I can die very soon if someone shares SN that costs less than $100. For the first time in life due to health I don't have money to spare. I can understand what you mean.

 

[littleearthquakes]

It's awful. I'm sorry you're dealing with this. Sucks cause I want to live but can't deal with the sickness. In the same boat. Hugs

Exactly. I do want to live, there's a lot I still wanted to do, I have relationships I care about, but I can't do anything I enjoy anymore and my whole life is feeling pain and/or trying to avoid more pain and it's agony. I'm sorry you're in the same boat. Hugs

I'm very sorry. It sounds like hell. Chronic pain is so hard for others to understand. No wonder you want to die. Neuropathy isn't easy to treat from what I've heard. My hands and forearms and neck are on fire and hurt with movements and spasms at times daily. They don't know what the cause is and some downplayed my pain too. A doctor once refused helping me due to my age.

I'm not closer to finding out what it is and what they thought it was but I have to work and help family. Because people can't visualize pain they may not believe it. I can't lift much and hold things for long periods. I use software to type easier. I hate my life and it's getting worse without knowing what it is. Death means no more if this.

I'm on a medication called Topamax for migraines and more but it's impacting my vision. I wear glasses to help. Topamax does help me. Nothing helps for the pain and limited motion in my hands fingers and arms now. It's numb pins and needles with constant throbbing pain. I use them less to make it hurt as less as I can. Soon I may not be able to work. I do what I can since I need money, but I don't know what's going to happen.

If you'd like a friend I'm here to just listen. I don't have the things you mentioned but I'm tired of being in pain with no answers and having to get up every day to a life that sucks. I hope I can die very soon.

Neuropathy is so terrible. I have some of that in my hands and feet and other areas and it's terrible. Are you open to DMs? I would love a friend who understands this stuff.

 

[persimmon]

Hey all. I'm new here, though I've been a lurker on and off for a couple years and have read through the handbook etc. I've been disabled and chronically ill with severe illness and pain since childhood. I'm also mentally ill and autistic, so that's complicated things too. I was gaslit about my symptoms for decades, told it was just anxiety or my anxiety was making me sick, victim blamed, felt so scared and alone. Finally found out this is a common female/AFAB experience and was finally diagnosed with a bunch of conditions including EDS, POTS, MCAS, and ME/CFS.

Sorry you're going through all this - I'm here because of chronic pain also. There are quite a few of us around so you're not alone.

 

[ihateearth]

Exactly. I do want to live, there's a lot I still wanted to do, I have relationships I care about, but I can't do anything I enjoy anymore and my whole life is feeling pain and/or trying to avoid more pain and it's agony. I'm sorry you're in the same boat. Hugs

Neuropathy is so terrible. I have some of that in my hands and feet and other areas and it's terrible. Are you open to DMs? I would love a friend who understands this stuff.

Yes sure. It's very frustrating. I just tried to talk to my father about the pain after the test I had today, but sometimes people don't know what to say. I try to not blame them. It's isolating. I'm gonna take a break and rest for a bit but I'll be around in a few.

 

[LunarLight]

I haven't experienced chronic pain myself but my former partner had fibromyalgia (or maybe EDS). Pregabalin helped a lot. Have you tried it? I fully agree that most doctors are shitty but some of them are safe.

 

[littleearthquakes]

I haven't experienced chronic pain myself but my former partner had fibromyalgia (or maybe EDS). Pregabalin helped a lot. Have you tried it? I fully agree that most doctors are shitty but some of them are safe.

I've tried basically every med in every category. MCAS makes me really sensitive and I usually react too much to even tolerate them enough to see if they'd help. I've seen dozens of specialists over the years.

 

[Meteora]

I love Tori.

It is horrible that you don't get the help you need..... how do people think you should continue to live? I relate very much, have constant pain, too. If the soul suffers the body aches. The problem is that doctors don't make this connection. It is too inconvenient.
You are not alone .

 

[LunarLight]

I've tried basically every med in every category. MCAS makes me really sensitive and I usually react too much to even tolerate them enough to see if they'd help. I've seen dozens of specialists over the years.

Holy shit. I'm so sorry. I can relate in a way because I've seen dozens of specialists and tried every med in every category but it was for my mental health. I think physical pain is worse though. That's why I'm so afraid of growing old.
I already feel fucked, I can't imagine how fucked you must feel. I hope you're gonna find people here who can fully relate.

 

[littleearthquakes]

I love Tori.

It is horrible that you don't get the help you need..... how do people think you should continue to live? I relate very much, have constant pain, too. If the soul suffers the body aches. The problem is that doctors don't make this connection. It is too unconvenient.
You are not alone .

I was hoping someone would know the Tori references. She's been my favorite musical artist since I was 11 and has helped me get through some major shit.

I know, right? If people lived with even a fraction of my pain they'd be feeling the same way but it's so easy to downplay or dismiss it or not take it seriously. Doctors don't know what to do, the system is broken and biased. I'm sorry you have constant pain too. Hugs

 

[Meteora]

I was hoping someone would know the Tori references. She's been my favorite musical artist since I was 11 and has helped me get through some major shit.

She's a great artist...

If people lived with even a fraction of my pain they'd be feeling the same way but it's so easy to downplay or dismiss it or not take it seriously. Doctors don't know what to do, the system is broken and biased. I'm sorry you have constant pain too. Hugs

Yeah I know, I think the same, if people felt the way I feel.... they'd have killed themselves 10 times already.
Thank you

 

[littleearthquakes]

Yes sure. It's very frustrating. I just tried to talk to my father about the pain after the test I had today, but sometimes people don't know what to say. I try to not blame them. It's isolating. I'm gonna take a break and rest for a bit but I'll be around in a few.

Getting an error trying to DM, not sure how that works on here, feel free to message me if you can (unless I need to enable that but can't find any options).

 

[ihateearth]

Getting an error trying to DM, not sure how that works on here, feel free to message me if you can (unless I need to enable that but can't find any options).

I get this message when clicking on your profile:

"Oops! We ran into some problems.
This member limits who may view their full profile."

I don't understand what it means.

 

[littleearthquakes]

I get this message when clicking on your profile:

"Oops! We ran into some problems.
This member limits who may view their full profile."

I don't understand what it means.

I got the same error. I think I fixed it so members can see my profile and message me now.

 

[willitpass]

I also have chronic pain and health conditions, though I severely self harm in many ways so it's hard to know what of it all is my own fault. I've had severe health issues including being placed in a coma before. The medical gaslighting is horrible, everything is always chalked up to anxiety or you see a specialist who says they can't help you, go see this other specialist. Even standing up has become painful as a live with muscle and bone pain every day. Because I think so much of what is wrong with me is due to my own treatment of myself it's hard for me to feel valid in my pain, as after all, didn't I do this to myself on purpose?

Im sorry you're suffering OP. I hope you find relief somehow.

 

[strangelife]

I really understand you, you are in a difficult situation, it is very difficult to accept. I am also very ill and in a similar situation. I always thought it was better to die than to become such a vegetable, and so fate turned out to be very angry with me. It feels like we are attracting trouble to ourselves, what I was most afraid of was happening to me. How do you live, can you leave the house?

 

[WearyWanderer]

I've tried basically every med in every category. MCAS makes me really sensitive and I usually react too much to even tolerate them enough to see if they'd help. I've seen dozens of specialists over the years.

Same But also nothing really helps anyway.

But also accidentally took something that made everything 1000x worse