Venting Chronic Pain and Hopelessness

[apfelstrudel]

I have fibromyalgia and it basically drains the life out of me. It's been two years since I got the diagnosis, I think 5-6 years since the symptoms started. Every day I'm in pain and so fatigued that I can't do anything. I'm unemployed, can't handle basic household chores and even "fun" stuff like meeting up with friends, hobbies, etc are draining me. Even tho I'm having fun and experiencing joy. It's just too much for my body. So I'm just laying in bed all day.

I live in Germany and have healthcare, but nothing I tried is working and my doctors aren't willing to try experimental stuff, even when I'm basically begging them for it. I feel like I'm standing in front of a wall and I'm too weak to climb it. Everything seems so hopeless. I don't know how many doctors I have to visit to finally get the help I need. I don't know where to get the energy to keep going.

And it's not like that's my "only issue"; I'm struggling with depression, OCD, eating disorders, CPTSD and some other ~fun~ stuff. It's just that for the first time in my life my wish to CTB is not primarily coming from my mental health problems and I don't know how to deal with it.

I don't wanna die, I just don't wanna live like this anymore and I don't know when (or if) my life will ever seem worth living to me. I feel like I'm just rotting away, dissociating until the next doctor tells me that they can't do anything else for me. Then repeat.

Edit: What especially frustrates me, is that I know that some off-label medicine (like adderall and other adhd stimulants) improve my well-being, but since I don't have an adhd diagnosis my healthcare provider won't pay for that. Without a prescription they're illegal here, and even if I was willing to risk that, I wouldn't be able to pay for it. I'm pretty sure I have adhd, but I'm not able to get a diagnosis bc literally everyone providing them has their waiting lists closed or I would have to pay them. I would, if I could. But I can't. This whole situation is so stupid and pointless. I'm gonna go cry now lol

 

[FuneralCry]

It really is so cruel how people have to suffer so much in this existence, it must be so dreadful what you are going through. But anyway best wishes, I understand why you'd feel so tired of it all.

 

[Enlighten]

That sounds truly terrible. How are euthanasia laws in Germany? I'd figure you have a strong case, because of your physical suffering. It's a shame they don't want to try out anything. They care more for the potential responsibility risk than the chance of making you better.
I wish you courage in these hard times <3

 

[randal_bond]

I have fibromyalgia and it basically drains the life out of me. It's been two years since I got the diagnosis, I think 5-6 years since the symptoms started. Every day I'm in pain and so fatigued that I can't do anything. I'm unemployed, can't handle basic household chores and even "fun" stuff like meeting up with friends, hobbies, etc are draining me. Even tho I'm having fun and experiencing joy. It's just too much for my body. So I'm just laying in bed all day.

I live in Germany and have healthcare, but nothing I tried is working and my doctors aren't willing to try experimental stuff, even when I'm basically begging them for it. I feel like I'm standing in front of a wall and I'm too weak to climb it. Everything seems so hopeless. I don't know how many doctors I have to visit to finally get the help I need. I don't know where to get the energy to keep going.

And it's not like that's my "only issue"; I'm struggling with depression, OCD, eating disorders, CPTSD and some other ~fun~ stuff. It's just that for the first time in my life my wish to CTB is not primarily coming from my mental health problems and I don't know how to deal with it.

I don't wanna die, I just don't wanna live like this anymore and I don't know when (or if) my life will ever seem worth living to me. I feel like I'm just rotting away, dissociating until the next doctor tells me that they can't do anything else for me. Then repeat.

Sorry you're suffering so much. I have ME/CFS, among others (not the worst of my ills, for sure), and also have pain all over my body. At one point the pain became hardly bearable. I decided to try experimental treatment myself. I went ahead and bought Guaifenesin from the US. I know well not to expect any help from official medicine. You know what, it did help. I couldn't believe it but it did. I also started getting this horrible body odour and had to take showers every day or every second day (not a mean feat for me with so little energy). My carer helped me, of course. I wouldn't have done it myself. I still have pain but nothing like before.
I don't advise you anything. Just thought that I would share.

 

[apfelstrudel]

That sounds truly terrible. How are euthanasia laws in Germany? I'd figure you have a strong case, because of your physical suffering. It's a shame they don't want to try out anything. They care more for the potential responsibility risk than the chance of making you better.
I wish you courage in these hard times <3

As far as I know it's outlawed here. People usually go to Switzerland for that, but I don't have the money and they'd probably reject me bc of my mental problems. Which I kinda get, but it sucks lol

 

[moondazed]

I'm sorry you're in so much pain. I can only imagine how that would tear you down over time. I agree with Enlighten, I'd assume the reason doctors won't try experimental stuff is due to liability. Pitiful how much beauracracy prevents people from getting what they need.

Hope you find some peace

 

[apfelstrudel]

I'm sorry you're in so much pain. I can only imagine how that would tear you down over time. I agree with Enlighten, I'd assume the reason doctors won't try experimental stuff is due to liability. Pitiful how much beauracracy prevents people from getting what they need.

I'm sorry you're in so much pain. I can only imagine how that would tear you down over time. I agree with Enlighten, I'd assume the reason doctors won't try experimental stuff is due to liability. Pitiful how much beauracracy prevents people from getting what they need.

Hope you find some peace

Thank you <3 Yeah, it's definitely due to liability. There's not a lot of "official" treatments and the healthcare providers don't wanna fund off-label use. Which is a shame. I know that some substances definitely help me, but I don't have the money to just buy them myself. It's a sick joke honestly

Sorry you're suffering so much. I have ME/CFS, among others (not the worst of my ills, for sure), and also have pain all over my body. At one point the pain became hardly bearable. I decided to try experimental treatment myself. I went ahead and bought Guaifenesin from the US. I know well not to expect any help from official medicine. You know what, it did help. I couldn't believe it but it did. I also started getting this horrible body odour and had to take showers every day or every second day (not a mean feat for me with so little energy). My carer helped me, of course. I wouldn't have done it myself. I still have pain but nothing like before.
I don't advise you anything. Just thought that I would share.

Thank you for sharing <3

 

[BlazingBob]

I have fibromyalgia and it basically drains the life out of me. It's been two years since I got the diagnosis, I think 5-6 years since the symptoms started. Every day I'm in pain and so fatigued that I can't do anything. I'm unemployed, can't handle basic household chores and even "fun" stuff like meeting up with friends, hobbies, etc are draining me. Even tho I'm having fun and experiencing joy. It's just too much for my body. So I'm just laying in bed all day.

I live in Germany and have healthcare, but nothing I tried is working and my doctors aren't willing to try experimental stuff, even when I'm basically begging them for it. I feel like I'm standing in front of a wall and I'm too weak to climb it. Everything seems so hopeless. I don't know how many doctors I have to visit to finally get the help I need. I don't know where to get the energy to keep going.

And it's not like that's my "only issue"; I'm struggling with depression, OCD, eating disorders, CPTSD and some other ~fun~ stuff. It's just that for the first time in my life my wish to CTB is not primarily coming from my mental health problems and I don't know how to deal with it.

I don't wanna die, I just don't wanna live like this anymore and I don't know when (or if) my life will ever seem worth living to me. I feel like I'm just rotting away, dissociating until the next doctor tells me that they can't do anything else for me. Then repeat.

Edit: What especially frustrates me, is that I know that some off-label medicine (like adderall and other adhd stimulants) improve my well-being, but since I don't have an adhd diagnosis my healthcare provider won't pay for that. Without a prescription they're illegal here, and even if I was willing to risk that, I wouldn't be able to pay for it. I'm pretty sure I have adhd, but I'm not able to get a diagnosis bc literally everyone providing them has their waiting lists closed or I would have to pay them. I would, if I could. But I can't. This whole situation is so stupid and pointless. I'm gonna go cry now lol

I completely understand and am dealing with a cluster of chronic illnesses and also mental issues. I'm basically stuck in bed every day. I don't want to die either but I've been battling this for 20 years and I'm just done. Like you, stimulants really helped me but I can't get them.

 

[Scattered-Soul]

I completely understand your feelings, I'm dealing with the same symptoms and doctors aren't of any help so we're forced to basically rot away and potentially deal with it ourselves while at the same time we're denied the option of assisted suicide (which isn't legal both in my and your country I think). We're encouraged to keep going and it's not like we don't wanna get better but nobody can help us and we're just expected to deal with it. What I find the most frustrating is how useless the health care system is, it's pretty bad in my country but from all the interactions I've had with people from all over the world and all the stuff I've learned it seems like it's pretty much the same everywhere when you're someone who has a bit of an unconventional illness. I'm glad that at least you were able to get a diagnosis eventually (despite that not helping much which I'm sorry for) because the medical gaslighting and effort someone has to go through in order to get there can suck all of your energy on its own.

"I feel like I'm just rotting away, dissociating until the next doctor tells me that they can't do anything else for me. Then repeat." - I feel like I could've written this myself, that's been my life for quite a while now and what sucks is that it feels like such a waste of money every time but there isn't any other option either. And I genuinely feel like most doctors don't even care that much and don't even wanna bother dealing with it or trying to find something that could potentially help. I feel very frustrated with the lack of research surrounding our issues as well. It's such a pain honestly and there's no other outcome other than hopeless in a situation like that. I'm sorry.