Physical chronic illness - suicide

[medobun]

Hi,

I'm searching people with a physical chronic illness like mine to communicate about suicide.
I have a neurological disorder and also suffered a spinal trauma with neurological damage.
My life is kind of a nightmare and my body is a prison for myself.
Having a lot of pain through out my damaged body and I'm pretty immobile.

Would like to get people known with similar issues/situations.
I'm from Germany. Feel free to contact me :)

Regards!

 

[Desdemona]

I have a few neurological disorders, not as severe but they make me house bound and I'm in a lot of pain as well. I've been in chronic pain for about 3 years now but 2019-2020 has been absolute hell

 

[medobun]

I have a few neurological disorders, not as severe but they make me house bound and I'm in a lot of pain as well. I've been in chronic pain for about 3 years now but 2019-2020 has been absolute hell

I fell sorry to hear that. For me the unbearable pain in combination with the neurological issues is pretty much the biggest shit ever. My whole spine deformed. Surgery could be an option, but the outcomes are pretty nasty.

 

[Desdemona]

I fell sorry to hear that. For me the unbearable pain in combination with the neurological issues is pretty much the biggest shit ever. My whole spine deformed. Surgery could be an option, but the outcomes are pretty nasty.

I'm so sorry :( It sucks when the only treatment options are ones that could leave you worse off

 

[medobun]

I'm so sorry :( It sucks when the only treatment options are ones that could leave you worse off

yeah totally and also just symptomatic treatment possible with pain meds. I'm on Oxy on daily basis. But I think you know the struggle.

 

[Pookie]

I suffer chronic malaise and fatigue daily, almost like I have the flu. Blood tests are normal. I also have a neurological sleep disorder which causes me sleep issues. I've been told I may have fibromyalgia. Painkillers don't really help me so I'm forced to endure the pain.

I have a few neurological disorders, not as severe but they make me house bound and I'm in a lot of pain as well. I've been in chronic pain for about 3 years now but 2019-2020 has been absolute hell

Anything help your pain?

 

[Red]

Sympathies to those who suffer this way - I have neurological pain and weird sensations that still remain undiagnosed for 5 years; sharp, visceral pain as well as numb spots, warm/cold water trickling sensations, weakness, tingling, etc... struggling to find hope as the pain alone is enough to want out, without the added pressure of nobody really believing me and losing friends and family as a result. It's funny how people can take someone else's illness personally? Perfect in your time of greatest need
Really opens the eyes to the true nature of people, and how two-faced and cold they can really be to ignore the suffering of someone so close by. Too many times has the interest instantly faded upon hearing the real answer to "how are you?" that it no longer seems like a question but a cue to lie in order to be agreeable.
If only doctors knew the full reach of not probing deep enough to find the cause, how dismissing your symptoms affects the patient's entire life as they struggle to fight on and ignore it, only to be proved right all along when it's too late...
The only realistic hope left is that it proves to be fatal soon; a hope that doesn't feel nearly as dramatic as it sounds. I know it's progressing, so fingers crossed

 

[peacechoice]

I fell sorry to hear that. For me the unbearable pain in combination with the neurological issues is pretty much the biggest shit ever. My whole spine deformed. Surgery could be an option, but the outcomes are pretty nasty.

Whatever you do, don't do surgery unless it is absolutely necessary. It'll only leave you with worst nerve pain than you're already in!
Hey, I can relate to your pain. My incompetent doctors don't want to tell me what I have or order test because they think I'm too young to have any illness. I hate it. My back is always in pain and I am always in pain as well. I have nerve pain from my cervical spine. I already have spinal stenosis and I'm only 21. My life is only going to get more grueling and worst as I age even a little bit. I hate it. If you need to talk please reach out, I know it sucks to have to have pain every fucking day of your life. Of course there are good days but man are the bad days bad. Wishing you more pain free days than bad ones!

 

[Chronicillness]

You sound a lot like me.

Most of my incredibly severe symptoms stem from my issues with the cranio-cervical junction being unstable. I have cranio-cervical instability, tempo-mandibular dsyfunction and dozens of diseases and symptoms that result from a very fucked up spine (neck). I've been suggested neurosurgery to correct a compressed brain stem resulting from the base of my head being unstable. I am in an alternative treatment now for these set of issues, while I have had some success, it is likely that I will need numerous other treatments to fully gain back any semblance of functionality. And unfortunately, we are running out of money and will likely kill myself once those funds dry up.

As of now, I am homebound and unable to freely move around. I am also forced to lie down completely flat on a sloped bed to "reset" my spine, then I am able to sit upright again for a few hours again before I have to lay down again to "reset" my unstable spine.

 

[peacechoice]

Sympathies to those who suffer this way - I have neurological pain and weird sensations that still remain undiagnosed for 5 years; sharp, visceral pain as well as numb spots, warm/cold water trickling sensations, weakness, tingling, etc... struggling to find hope as the pain alone is enough to want out, without the added pressure of nobody really believing me and losing friends and family as a result. It's funny how people can take someone else's illness personally? Perfect in your time of greatest need
Really opens the eyes to the true nature of people, and how two-faced and cold they can really be to ignore the suffering of someone so close by. Too many times has the interest instantly faded upon hearing the real answer to "how are you?" that it no longer seems like a question but a cue to lie in order to be agreeable.
If only doctors knew the full reach of not probing deep enough to find the cause, how dismissing your symptoms affects the patient's entire life as they struggle to fight on and ignore it, only to be proved right all along when it's too late...
The only realistic hope left is that it proves to be fatal soon; a hope that doesn't feel nearly as dramatic as it sounds. I know it's progressing, so fingers crossed

Omg you put my thoughts into your own beautiful words! This is exactly the sentiment that I was looking for. I am saving your post! I have never complained because I thought pain was a normal part of life and when pain got worst this year and more weird things started happening, it was too much to ignore and I finally started to "complain". Once this happened people roll their eyes and stay quiet as if they are telling you to shut up about your illness and stop complaining. I've learned to stop and just say good when asked. I hate it but that's what they want. I also don't want to make life about me. I have like all the symptoms you describe but doctors refuse to listen. My feet go numb sometimes like wtf. I'll walk weird in the store and I can't control it. It was horrible. But no one believes me. I am sorry the doctors don't believe you and I will yet myself out of existence once this "illness" progresses enough to leave me impaired. And pain management is no longer effective. Please reach out to me if you need. I know the feeling exactly!

You sound a lot like me.

Most of my incredibly severe symptoms stem from my issues with the cranio-cervical junction being unstable. I have cranio-cervical instability, tempo-mandibular dsyfunction and dozens of diseases and symptoms that result from a very fucked up spine (neck). I've been suggested neurosurgery to correct a compressed brain stem resulting from the base of my head being unstable. I am in an alternative treatment now for these set of issues, while I have had some success, it is likely that I will need numerous other treatments to fully gain back any semblance of functionality. And unfortunately, we are running out of money and will likely kill myself once those funds dry up.

As of now, I am homebound and unable to freely move around. I am also forced to lie down completely flat on a sloped bed to "reset" my spine, then I am able to sit upright again for a few hours again before I have to lay down again to "reset" my unstable spine.

Out of curiosity, how did you come to find out. I have been doing a lot of research on this and this is one of the things that I think I may have. Not sure will look at mri soon, but please reach out to me? I'm just trying to find a diagnoses.

 

[Red]

Bless you I'm equally both glad and sad that you understand!
There isn't enough help for people like us - instead of trying to find out what it is, they spend too much time proving what it isn't , like it's confirmation bias for them to prove that we're batshit crazy as they suspected all along lol why anyone would pretend to feel like this is beyond me but I guess there are some that would - I doubt they would be able to present with the same manner of consistency or articulation as someone genuinely going through it but nobody sticks around long enough to judge it right!
It's all too much and too much of a revealer when it comes to loved ones and medical professionals around you - the right people don't care enough. While it's beautiful and gratifying to meet someone online or in the local chemist who shows interest and sympathy for your condition, the ones who really need to get involved just don't, even if they're morally obliged, or even paid, to do it!
Just goes to show how crap people are, and this is why I am DONE.

 

[peacechoice]

Bless you I'm equally both glad and sad that you understand!
There isn't enough help for people like us - instead of trying to find out what it is, they spend too much time proving what it isn't , like it's confirmation bias for them to prove that we're batshit crazy as they suspected all along lol why anyone would pretend to feel like this is beyond me but I guess there are some that would - I doubt they would be able to present with the same manner of consistency or articulation as someone genuinely going through it but nobody sticks around long enough to judge it right!
It's all too much and too much of a revealer when it comes to loved ones and medical professionals around you - the right people don't care enough. While it's beautiful and gratifying to meet someone online or in the local chemist who shows interest and sympathy for your condition, the ones who really need to get involved just don't, even if they're morally obliged, or even paid, to do it!
Just goes to show how crap people are, and this is why I am DONE.

Ohh absolutely with you on that one. Doctors don't care they only care about paying their loans off. They look at you with contempt when you tell them what's wrong and roll their eyes at you. The sad reality is that no one cares at all.
Plus I am too poor to deal with all the problems this illness brings me. I can't even afford to be this sick, it's just terrible. I don't even want to try because I know there is no cure.

 

[Red]

That's the extra thing too that they don't seem to understand - there are no positives to living this way, I don't understand why people I've know for years would think I'd willingly be like this, especially when it's proven to have been the opposite to any motivations that they could assign to me; I've not drawn more attention as friends and family have deserted me, no financial gain as I'm obviously poorer and less independent than before!

In an advanced, civilised society there should not be such a thing as too poor or too alone to be ill, like you and I respectively! It boggles the mind to think that anyone would see it as a ploy or any kind, except those that would use it as a tool themselves - I've literally only ever been accused of using my illness to get a free ride by other people who would totally do that with no qualms in my position...

I'm so apologetic for my crappiness it's genuinely pathetic but I know that these particular people would use it completely and apologetically to their advantage that it would actually be criminal lol

 

[peacechoice]

That's the extra thing too that they don't seem to understand - there are no positives to living this way, I don't understand why people I've know for years would think I'd willingly be like this, especially when it's proven to have been the opposite to any motivations that they could assign to me; I've not drawn more attention as friends and family have deserted me, no financial gain as I'm obviously poorer and less independent than before!

In an advanced, civilised society there should not be such a thing as too poor or too alone to be ill, like you and I respectively! It boggles the mind to think that anyone would see it as a ploy or any kind, except those that would use it as a tool themselves - I've literally only ever been accused of using my illness to get a free ride by other people who would totally do that with no qualms in my position...

I'm so apologetic for my crappiness it's genuinely pathetic but I know that these particular people would use it completely and apologetically to their advantage that it would actually be criminal lol

I am so sorry you have to go through all this pain. I really am. I Know it sucks. Like you, I can't fathom a world where people that are sick and poor don't even get a chance at life. We are told all our lives that if we try and we pull ourselves up by our bootstraps that we can make it anywhere. This is absolutely not true bearing in mind the most important thing we have, which is our health. If this is factual, then I can only come up with the conclusion that We're never really given a chance. America does not care. They don't. It capitalism baby. Unluckily for us, we are sick and that is the worst thing that can happen in a capitalistic society. If you don't mind me asking how old are you and what is the illness you suffer from. Just want to make sure we are understanding Each other right.

 

[Red]

I'm 37 and have some sort of mysterious ailment, on top of osteoarthritis, endometriosis and a spinal lesion of unknown cause right now. They're not too bothered about investigating, going is slow despite it being in writing that it still could be an indolent malignancy.
How about you?

 

[medobun]

Whatever you do, don't do surgery unless it is absolutely necessary. It'll only leave you with worst nerve pain than you're already in!
Hey, I can relate to your pain. My incompetent doctors don't want to tell me what I have or order test because they think I'm too young to have any illness. I hate it. My back is always in pain and I am always in pain as well. I have nerve pain from my cervical spine. I already have spinal stenosis and I'm only 21. My life is only going to get more grueling and worst as I age even a little bit. I hate it. If you need to talk please reach out, I know it sucks to have to have pain every fucking day of your life. Of course there are good days but man are the bad days bad. Wishing you more pain free days than bad ones!

Surgery would cover 2/3 of my spine and the outcome is pretty undclear. it wouldn`t be a fix it`s more like a crutch to maybe get more functionality but also the price I would pay is hard. Sounds pretty terrifying. How did u get spinal stenosis with 21 in the cervical spine? I have no free day without pain and also neurological issues. The neurological issues are like stroke like symptoms 20 times a day.

 

[rabbithole]

Hi there. I also have a neurological disease (arachnoiditis) and a spinal cord injury at L2. I'm still able to walk but couldn't because of spasticity when it first happened. When the pain flares up I cannot walk on my feet at all.

I'm sorry you're going through this hell. I hope you have some decent support in your life at least. It's grueling physically but then the emotional anguish is a whole other pain

 

[succor]

Neurological issues here (chronic migraines, nerve damage in spine, neck, shoulder, and leg), GI disease, liver disease, connective tissue disorder, dysautonomia, just to list a few. It's all been going downhill for about the last 4 years in particular but I've had issues all my life. I hope you find some sort of relief from your pain, whether it be through treatment or release. I'm always here if anyone needs to talk. I understand.

 

[W’ren]

My sympathies to everyone...
Hi, i'm 46 and i've been in chronic pain since i was in a serious car accident at 16 that ended my elite skiing career. I was being scouted for the national team and was Olympic calibre... i was that good, that healthy... my body was that strong-
Then i found out i had 2 vertebrae in my cervical spine fused. And i have fibromyalgia- and chronic fatigue, chronic migraines, i have bladder prolapse (stage 3/4), uterine prolapse (stage 3/4) and large rectocele, and these affect my life in a huge way.
I take lots of pain meds. Tried lidocaine infusions- they didn't work... tried a lot of meds. Right now on gabapentin, codeine contin and tramacet for pain plus some antidepressants that are supposed to help pain.. they don't help much but they take the edge off.
Weather makes everything worse. :( rain is awful- and when the pressure shifts my head explodes.
Some days i sleep all day.
I have a big surgery coming up- the recovery time will be 6-8 weeks. Yay me. :/ I'm wondering if i should just ctb before that and save everyone the trouble.
If anyone needs to talk about pain + ctb, I'll chat with you. Or if wants to talk about anything- i'm here.
Chronic pain changes so much- it changed me- it changed how people around me treated me- it affects my relationships and my mental illness- pain, physical issues... makes everything worse and makes life harder..
Hope my experience has helped somewhat-

 

[rvsw]

Bedridden with chronic pain.46. hopefully will ctb soon.

 

[lifeisbutadream]

Yes, that is why i am here too...

 

[the_final_countdown]

This is the only place really where you can list an obscure disease or symptom, and people immediately and readily understand.

They don't downplay the pain. Everybody else shrugs it off as something to live with. But they don't know.