Venting chronic pain caused by mental illness

[pretty_city.lights]

I have chronic joint pain and stomach problems. i cant eat, sleep, walk, or socialize like a normal person and all the things i enjoy doing bring me pain. ive been getting tests done for years and go to physical therapy regularly, but my doctors have found absolutely nothing. Last time i went in, they said that my joint problems are likely due to de-conditioning from depression and my stomach problems are likely complications of anorexia. im just so mad at myself. i cannot fucking believe i did this to myself. So much time and money spent to figure this out, and its my fault? I finally know the cause of my issues and there is nothing i can do about it. I have tried so hard to get better and I am just so fucking tired of living like this. They wont prescribe me painkillers because of my addictions, which of course pushes me towards illegal drugs like coke and ketamine which i already had a problem with. That and drinking/smoking is the only way i can get relief from my pain. I spend every day laying in bed doing nothing and talking to no one. I cant even play video games like i used to (which used to be my favorite hobby, i love the escapism of getting really invested in a game and being able to ignore everything else, even if its just for a little bit) as sitting up makes my joints and stomach hurt even more. My doctors started treating my symptoms but nothing has made a dent, and most of the medications theyve tried have made me feel worse. I want to be hopeful so bad, i want to believe that theres a solution or a treatment that will end my suffering, but i dont see any real options for me besides catching the bus and getting the fuck out of here for good. I feel so trapped. I'm sorry for rambling, im not a good writer but i wanted to get my thoughts out. I know theres a thread on chronic pain, if this is the wrong place to post let me know and i will take it down. Thank you for reading

 

[theboy]

Fibromyalgia

 

[pretty_city.lights]

Fibromyalgia

i have thought about this quite a bit in the past, it does match my symptoms. unfortunately it doesnt seem like there are any tests for this, but i have had a lot of other conditions ruled out already so maybe i will mention this to my doctor. do you have any experience with the treatments/medication for this? i will absolutely do my own research, just curious about what that might look like. thank you

(or were u saying that you have fibromyalgia? sorry, im dense haha.)

 

[AAE]

If you are also hypermobile and/or have elastic skin you should look up Ehlers-Danlos Syndrome. (EDS) I have the most common type which they say some can live with "just fine" but at age 40 it's hell.

 

[FuneralCry]

I hope you find the relief from suffering you search for, I wish you the best.

 

[WhiteRabbit]

I'm guessing you've already been tested for autoimmune issues?

 

[pretty_city.lights]

If you are also hypermobile and/or have elastic skin you should look up Ehlers-Danlos Syndrome. (EDS) I have the most common type which they say some can live with "just fine" but at age 40 it's hell.

I am hypermobile and have elastic skin but i dont fit the criteria for eds. thank you for your comment, i hope you find peace and im sorry youre suffering

I'm guessing you've already been tested for autoimmune issues?

yeah, still no dice. really does feel like my body is attacking itself though lol

 

[theboy]

i have thought about this quite a bit in the past, it does match my symptoms. unfortunately it doesnt seem like there are any tests for this, but i have had a lot of other conditions ruled out already so maybe i will mention this to my doctor. do you have any experience with the treatments/medication for this? i will absolutely do my own research, just curious about what that might look like. thank you

(or were u saying that you have fibromyalgia? sorry, im dense haha.)

No, I don't have that disease but according to your account it is "my diagnosis".

Yes, I have a lot of experience (I don't know if it's good or bad to say that) but I can talk about it extensively since I have a vast medical history.

 

[pretty_city.lights]

No, I don't have that disease but according to your account it is "my diagnosis".

Yes, I have a lot of experience (I don't know if it's good or bad to say that) but I can talk about it extensively since I have a vast medical history.

thank you, i will look into this. I'll update the thread if i get any answers :)

 

[AAE]

I am hypermobile and have elastic skin but i dont fit the criteria for eds. thank you for your comment, i hope you find peace and im sorry youre suffering

Thanks and hugs back! The fact that you're hypermobile and have elastic skin should mean that there is something wrong with your collagen, like with EDS but if all criteria aren't met you can still be diagnosed with Hypermobility Spectrum Disorder (HSD). The doctors don't know everything about it yet and they haven't even identified the gene that causes EDS Hypermobile Type but things are moving so much faster thanks to the internet. I wish you luck!

 

[death_by_life]

Fibromyalgia

Yes! My first thought, too. I've had it for 40+ years, and tried to get disability for it but was denied because I was too "articulate" and too young (I was 43 at the time).

Stuff that works:
Eating relatively well (I'm not a saint here, but I try)
Melatonin
Amitriptyline for pain and sleep
Lorazepam if you can get it for "spot treatments"
Being self-employed so I can make my own schedule
Having animals to take care of so I *have* to get up and move at least once per day
Cannabis
GABA (though not if you're on SSRIs or SNRIs)
Engaging in learning something (can be difficult to do when overwhelmed, but really does help when I can do it)

No other pharmaceuticals have helped. My previous therapist helped, but she retired. Ignore the "do gooders" that think one silly little cure (like turmeric or something) is the answer to everything, it might help but not enough. Also ignore the people who say "you have to want to get better," because that's just bs. Social support is great if you can get it (I'm too weird for friends or a partner, so I'm on my own).

I'd be happy to chat more if you like, but that's where I'm at after all this time.

 

[pretty_city.lights]

Yes! My first thought, too. I've had it for 40+ years, and tried to get disability for it but was denied because I was too "articulate" and too young (I was 43 at the time).

Stuff that works:
Eating relatively well (I'm not a saint here, but I try)
Melatonin
Amitriptyline for pain and sleep
Lorazepam if you can get it for "spot treatments"
Being self-employed so I can make my own schedule
Having animals to take care of so I *have* to get up and move at least once per day
Cannabis
GABA (though not if you're on SSRIs or SNRIs)
Engaging in learning something (can be difficult to do when overwhelmed, but really does help when I can do it)

No other pharmaceuticals have helped. My previous therapist helped, but she retired. Ignore the "do gooders" that think one silly little cure (like turmeric or something) is the answer to everything, it might help but not enough. Also ignore the people who say "you have to want to get better," because that's just bs. Social support is great if you can get it (I'm too weird for friends or a partner, so I'm on my own).

I'd be happy to chat more if you like, but that's where I'm at after all this time.

This is really helpful, thank you! do you mind me asking what field you work in? totally okay if thats too personal, im just curious. one of the main things ive been struggling with is finding a job that doesnt make my pain flare too badly. I will definitely look into those medications, i have an appointment scheduled to have my symptoms evaluated so hopefully something will come of that. Also, i totally agree with the having pets thing. I know it doesnt work for everyone, but i have a cat and he is often my sole motivator for moving around and getting shit done. Again, tysm for the advice, i really appreciate it! I would also be totally open to chatting, im not a great conversationalist but its always nice talking to other disabled folks. feel free to dm me, no pressure ofc :)

 

[death_by_life]

This is really helpful, thank you! do you mind me asking what field you work in? totally okay if thats too personal, im just curious. one of the main things ive been struggling with is finding a job that doesnt make my pain flare too badly. I will definitely look into those medications, i have an appointment scheduled to have my symptoms evaluated so hopefully something will come of that. Also, i totally agree with the having pets thing. I know it doesnt work for everyone, but i have a cat and he is often my sole motivator for moving around and getting shit done. Again, tysm for the advice, i really appreciate it! I would also be totally open to chatting, im not a great conversationalist but its always nice talking to other disabled folks. feel free to dm me, no pressure ofc :)

I'm glad it's helpful! I might doxx myself here, but ultimately I don't think anyone would come looking for me here if I ctb, so it probably doesn't matter. I'm a horse trainer and photographer (two separate businesses). I only work part time, and it's just about enough to mostly pay the bills but it does allow me to be fairly flexible with my schedule. Mostly I coach clients through working with their horses, so if I'm not feeling well I don't have to do a whole lot of physical activity, and I can reschedule if I really need to. Long story short, I had to make up jobs that I'm strongly motivated to do, because yes, working a "real" job is too much. I guess my advice here would be to see if you have anything you're very motivated to do, and see if you can make that into a job. It took several years for each of my businesses to get going, and there have been a number of years where it's really, really sucked, but it's still better than a "real" job.

Melatonin and GABA are over-the-counter drugs, at least in the US, so it could be possible to try them depending on where you are. Cannabis is not legal in my area, but is in nearby areas so it is accessible. I'm not sure how that works out for you, and I wouldn't specifically recommend that you try it if you haven't, but it could be an option. Proceed with caution if you do though, since it doesn't work the same for everyone.

Yes, having cats has been a blessing and a curse, since they make it easier to stay and yet harder to leave, and my horses are the same. The horses also provide "forced exercise," and some movement (as much as possible, really) is really good for fibromyalgia. The tricky part is knowing when to push and when to coast or stop entirely. I'm lucky that I have someone who can feed my horses if I can't, but I do my best to do it myself if at all possible because as I say the movement is mostly good, and it does give a sense of accomplishment on really bad days.

I'm happy to DM as well, though I'm not always consistent with communication, especially on bad days. But I'm more than happy to answer questions!

 

[KuriGohan&Kamehameha]

Your doctors are full of shit. It's easier to blame physical pain that can't be explained on a nebulous concept of mental illness than refer you to more complex/expensive testing or admit they simply don't know. The cop out explanation for chronic pain with no obvious textbook easily identifiable physical signs is deconditioning or mental issues by lazy and dishonest doctors. Even everything 'mental' has an underlying physical cause even if we don't understand it yet.

Since they aren't giving you painkillers, I'd assume they're trying to treat your nausea and joint pain with antidepressants, but some of them can actually make stomach pains worse, if they have serotonergic properties, so that's something to be aware of if you feel like the meds aren't sitting right with you. When my stomach issues were at their worst, atypical histamine blockers were the most effective thing for me, but it varies so much by person what helps and what doesn't.

I'm sorry you're in this situation. I've been in a similar boat for over half a decade at this point, I got tired of the gaslighting and bullshit and quit dealing with them because they wouldn't take me seriously and said so many hurtful things. No one should have to deal with this sort of thing when it is already tough enough to have painful conditions, support from others is a huge component of coping with disease.

We can only hope in the next few years there is significantly more research into chronic pain and it's causes. Like someone else mentioned, you might want to look into EDS if all your autoimmune tests haven't shown anything, as rare genetic diseases that aren't regularly tested for can be a cause of joint pain. Wishing you all the best, I know chronic illness is awful to deal with.

 

[_void]

Sending you gentle hugs. I suffer with multiple chronic pain diagnoses and I wouldn't wish it on anyone. It makes quality of life so poor and trying to navigate simple every day tasks that others wouldn't even think about a nightmare.

No medicines the doctors prescribed ever helped me, I only just experienced the horrible side effects making things worse. If the pain gets worse and you go to hospital you are seen as a drug seeker. Addiction or not it's inhumane of your doctor to not provide you with pain relief. If they worry about addiction they could very easily just make your prescriptions smaller, like a week at a time or something, they did that for me at one point after a ctb attempt.

I wish people could really understand how chronic pain severely impacts our mental wellbeing. I understand how truly tough and debilitating it is and I understand how it is to feel abandoned by the system. It breaks my heart that others have to experience this.

 

[pretty_city.lights]

I'm glad it's helpful! I might doxx myself here, but ultimately I don't think anyone would come looking for me here if I ctb, so it probably doesn't matter. I'm a horse trainer and photographer (two separate businesses). I only work part time, and it's just about enough to mostly pay the bills but it does allow me to be fairly flexible with my schedule. Mostly I coach clients through working with their horses, so if I'm not feeling well I don't have to do a whole lot of physical activity, and I can reschedule if I really need to. Long story short, I had to make up jobs that I'm strongly motivated to do, because yes, working a "real" job is too much. I guess my advice here would be to see if you have anything you're very motivated to do, and see if you can make that into a job. It took several years for each of my businesses to get going, and there have been a number of years where it's really, really sucked, but it's still better than a "real" job.

Melatonin and GABA are over-the-counter drugs, at least in the US, so it could be possible to try them depending on where you are. Cannabis is not legal in my area, but is in nearby areas so it is accessible. I'm not sure how that works out for you, and I wouldn't specifically recommend that you try it if you haven't, but it could be an option. Proceed with caution if you do though, since it doesn't work the same for everyone.

Yes, having cats has been a blessing and a curse, since they make it easier to stay and yet harder to leave, and my horses are the same. The horses also provide "forced exercise," and some movement (as much as possible, really) is really good for fibromyalgia. The tricky part is knowing when to push and when to coast or stop entirely. I'm lucky that I have someone who can feed my horses if I can't, but I do my best to do it myself if at all possible because as I say the movement is mostly good, and it does give a sense of accomplishment on really bad days.

I'm happy to DM as well, though I'm not always consistent with communication, especially on bad days. But I'm more than happy to answer questions!

I tried to dm you but i think my account may be too new unfortunately :( I'll do a compressed response here in case it still goes through. I also have an interest in working with farm animals, but always figured i wouldnt be able to do it due to my pain. It makes me happy that youve found something that works for you, and honestly makes me a bit more hopeful for my future (the bar is low, but still lol) as for cannabis, i do smoke and take edibles pretty regularly. It helps with my joint pain but makes my stomach pain worse, so its a trade off but its usually worth it in my mind. I definitely agree that i wouldnt reccomend anyone start smoking if they havent already. I am probably addicted to it, but its far from my biggest issue and im all for harm reduction, so im content with my use for now haha. In the process of trying to get my medical card rn, im hoping that will make things a bit easier for me!

Your doctors are full of shit. It's easier to blame physical pain that can't be explained on a nebulous concept of mental illness than refer you to more complex/expensive testing or admit they simply don't know. The cop out explanation for chronic pain with no obvious textbook easily identifiable physical signs is deconditioning or mental issues by lazy and dishonest doctors. Even everything 'mental' has an underlying physical cause even if we don't understand it yet.

Since they aren't giving you painkillers, I'd assume they're trying to treat your nausea and joint pain with antidepressants, but some of them can actually make stomach pains worse, if they have serotonergic properties, so that's something to be aware of if you feel like the meds aren't sitting right with you. When my stomach issues were at their worst, atypical histamine blockers were the most effective thing for me, but it varies so much by person what helps and what doesn't.

I'm sorry you're in this situation. I've been in a similar boat for over half a decade at this point, I got tired of the gaslighting and bullshit and quit dealing with them because they wouldn't take me seriously and said so many hurtful things. No one should have to deal with this sort of thing when it is already tough enough to have painful conditions, support from others is a huge component of coping with disease.

We can only hope in the next few years there is significantly more research into chronic pain and it's causes. Like someone else mentioned, you might want to look into EDS if all your autoimmune tests haven't shown anything, as rare genetic diseases that aren't regularly tested for can be a cause of joint pain. Wishing you all the best, I know chronic illness is awful to deal with.

Im sorry youre in a similar situation, i relate to this a lot. About a year ago they gave me a diagnosis of hypermobile arthralgia, which i thought would mean they could finally treat me but apparently it just means "you're hypermobile and have joint pain." which, like... yeah, lmfao? I'm trying to change doctors right now, i had an appointment with the new pcp recently and she at least seems more attentive so hopefully something will come of that. I'm not currently on antidepressants, but i have been in the past and they did indeed make my pain worse. Not trying to discourage anyone from seeking medication, i imagine there is probably an antidepressant out there that works for me, i just dont have the time or money to figure it out. Thank you for your reply, im sorry you're dealing with this too.

 

[pretty_city.lights]

Sending you gentle hugs. I suffer with multiple chronic pain diagnoses and I wouldn't wish it on anyone. It makes quality of life so poor and trying to navigate simple every day tasks that others wouldn't even think about a nightmare.

No medicines the doctors prescribed ever helped me, I only just experienced the horrible side effects making things worse. If the pain gets worse and you go to hospital you are seen as a drug seeker. Addiction or not it's inhumane of your doctor to not provide you with pain relief. If they worry about addiction they could very easily just make your prescriptions smaller, like a week at a time or something, they did that for me at one point after a ctb attempt.

I wish people could really understand how chronic pain severely impacts our mental wellbeing. I understand how truly tough and debilitating it is and I understand how it is to feel abandoned by the system. It breaks my heart that others have to experience this.

Its so hard to explain how exhausting chronic pain is to someone who has never dealt with it. it breaks my heart as well but i am, (somewhat selfishly) glad that others can relate. Its nice talking to people who can understand how tiring it is. I'm sorry you share this experience, its truly so draining and i agree that the healthcare system fucking sucks. Im in the US, not sure how it is where youre located but i imagine the dissmisive nature of doctors is pretty universal. I hope everyone in this thread is able to ease their pain in one way or another, though i know thats a very complicated, difficult thing for many of us. Still, wishing you peace and sending hugs as well

 

[death_by_life]

I tried to dm you but i think my account may be too new unfortunately :( I'll do a compressed response here in case it still goes through. I also have an interest in working with farm animals, but always figured i wouldnt be able to do it due to my pain. It makes me happy that youve found something that works for you, and honestly makes me a bit more hopeful for my future (the bar is low, but still lol) as for cannabis, i do smoke and take edibles pretty regularly. It helps with my joint pain but makes my stomach pain worse, so its a trade off but its usually worth it in my mind. I definitely agree that i wouldnt reccomend anyone start smoking if they havent already. I am probably addicted to it, but its far from my biggest issue and im all for harm reduction, so im content with my use for now haha. In the process of trying to get my medical card rn, im hoping that will make things a bit easier for me!

Aw, bummer. Well, I don't know when you get the ability to DM, but hang out a little longer and it will happen. Maybe there's a metaphor in that, I don't know...

I'm getting close to 50, and probably the only useful thing I've learned is that we are the only ones that can help us. Which sucks when you're capacity is always really low and frequently literally nothing is possible. So when something seems possible, it's got to be something I really want so I stand more of a chance of trying to do it. Horses are that. And sometimes it's still not enough to want to keep going. So, I hope you can find a back door that works for you. There's got to be a way for you.

Same re: cannabis. I quit for 2024, but started again around mid-December. It was nice to see the difference, but yeah, this is what I'm doing for harm reduction right now. I hope you get your medical card! That would definitely make things easier.