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My chronic pain/insomnia has driven me to death at 22. Someone please help me.

seawoven

Greenlighter
Joined
Oct 15, 2014
Messages
4
Please hear me out. I'm begging you, a stranger, to save me. If you have any knowledge of pain disorders or sleep disorders or anywhere I can go to fix this or take to fix this or anything at all, please help me.
It is very long and I'm sorry, it is very difficult to explain the convoluted thing that is killing me right now.
I don't expect anything from this. Everything has made me very cynical. I am a 22 year old girl for reference, I live with my family.
I used to think...I was entitled to have a functional brain and a functional body. I used to think I would have all the chances any other typical person would...to go to school, to work, to travel, to have a family...But that was all obliterated for me.
I have a chronic sleep disorder which would seem manageable if any sleep deprivation whatsoever did not wrack my body and my head with horrible, fucking vicious very physical pain. I think the key to getting anyone to understand this is to get them to understand how much pain I'm in, but I'm not sure how to do that, it is a very unique strange pain that I only feel when sleep deprived, it is a magnification and a combination of a lot of sensations.
My brain does not sleep on its own.
And now it hardly sleeps with any pharmaceutical meds whatsoever.

I have tried everything (obviously that is never true, but I have tried way too many things), truly. I swear...my "sleep hygiene" can be perfect,I will be completely relaxed, exhausted ready to sleep and I won't sleep. Once the pain sets in my anxiety takes over because I know I cannot handle it. It is truly the most indescribable, excruciating sick-nauseaus-electric-rotting-pain I have ever experienced, I know that sounds dramatic. I had issues keeping my sleep in check and I responded terribly to sleep deprivation for over ten years, but the last two years it has become an ongoing source of perpetual torment.
I had to leave school, the disorder destroyed any social aspects of my life(which were rare in the first place), because I became completely unreliable, bedridden and miserable due to my illness. It became so horrendous last year I went on pharmaceutical out of desperation (I would have killed myself if a change didn't happen soon...unfortunately I'm at that point again only worse, I keep spending hours drafting suicide notes and crying over them, I am aware of how melodramatic that sounds)...the school psychiatrist put me on klonopin which was the beginning of my fucked up dependency on that drug. I went off of it three weeks ago and I'm 70% certain this is why I'm at my lowest point again, klonopin has been impossible for me, but I would rather die than go back on it again.
I spend upwards of 3-14 hours just attempting to sleep every day, eventually I go to sleep with high doses of something (my doctor kept upping the elavil but it completely stopped working or never worked in the first place)
I know those 3-14 hours just seem like trivial numbers to you...but those are hours of absolute horrible fucking exhaustion where I don't even think to get out of bed because it feels like, 90% of the time I'm one second from falling asleep, from going under...it feels like it's right there...
but there is some invisible wall between me slipping under..I don't understand. I really don't. I watch my boyfriend (my only social contact who is very fucked up himself, but he has been very supportive) fall asleep instantly, anywhere any time...and it is all I can do not to seethe with envy (not at him..just at the ability, just at the unfairness...this has made me childish, I am just angry my own body would drive me to death over and over again when I'm fighting so hard to live.
It isn't even as simple as that, it has been far more inconsistent and this condition came on very gradually, and I did many things to exacerbate it when I was younger. I can see it all now, and it seems like to much damage to reverse. I wouldn't have the patience to reverse it anymore.

I feel ashamed talking about any of this because I believe my "disorders" are just magnified versions of things most people experience, the difference is...mine has become so festered it has overtaken everything. Society trivializes these issues...
But I also think...well, I haven't found a single person who has what I have (which is more discouraging than anything). The only people I've seen who have a similar reaction to sleep deprivation are people who already have underlying chronic pain issues like fibromyalgia. But none of my doctors or my psychiatrists or therapists believe I have fibromyalgia (I don't precisely fit all the symptoms), or CFS or any of those things. And all my blood tests always show up normally...which funnily enough to the nurses I talk to...is absolutely devastating to me...negative tests don't equate to good news for me. I would do anything to have something positive so I could have a tangible thing to treat or name or know.

Instead I have this nebulous fucking thing that is killing me. And I'm pissed. And it hurts and I'm sad, and I just want someone to understand that...I am suicidal in a way that is not suicidal to me. I have been truly suicidal in the past, and by that I mean..I've wanted to die. But I don't want to die now, I truly don't. I just want relief from this cycle of pain (I'm not saying there is never relief but the relief is too intermittent and too brief to sustain me). I'm scared. That's why I keep crying over suicide notes. I'm fucking terrified.
I am also angry I don't get to do anything I wanted to do and thought I could do..I won't get to love the way I thought I'd love or be who I thought I could be. I won't write what I wanted to write and read the things I wanted to read. I won't meet the people I've always wanted to meet. Even promises of the minuscule possibility of those things isn't enough to keep me alive anymore because it really is that all-consuming pain I cannot tolerate, I have flashbacks of it...it is traumatic enough to have flashbacks and I have it every fucking day again now...my heart clenches when I get in bed because I dread it so much, and I know that makes it worse...but even when that is solved and my anxiety is settled...it is still there. I might be in a state of unfathomably constant chronic stress and I just think it's normal because it's been there for so long. If that's the case.
Can someone help me get out of here? I seriously consider running away to a foreign temple where I know no one's name, where there's no stress whatsoever, just meditation, and I can learn to sleep again. But I don't know if I'm capable and I wouldn't know where to go. I also don't have any money, or else I would have left here a long time ago.

I'm trapped in every sense of the word, I'm trapped by my own body, I don't think most I meet know what that truly means.

It has gotten to the point where even my own boyfriend has admitted he doesn't know what is best for me...to let me die or to keep tormenting myself every day. I have worn away everyone in my life with this. I know that everyone in my immediate family would understand why I killed myself. They have seen firsthand the weeping, every day, the mourning, the pain, the sadness, the hospital visits...

There is not a day that goes by where I have to face the most exasperating, traumatic pain my body has inflicted on me.
This would be anxiety-inducing, depression-inducing, and suicide-inducing to most, if they felt like I did, I think. But maybe I'm just weaker with a lower pain tolerance than most, I don't know, I always question my sanity.
Nothing shows up on CT scans, I've been to the ER multiple times. The main theory from one therapist is that I might have a very severe sensory processing disorder.


I have a doctors appointment on Thursday, this specific doctor has not helped me so far. The worst thing about sleep disorders..while researching, while seeking treatment..is the constant bombardment of useless information, and the realization that NO ONE KNOWS WHAT THE FUCK THEY'RE DOING, in most cases doctors may as well be throwing darts blindfolded, and there isn't even a dartboard there, turns out the dartboard is a pool table or something, or maybe one mind is a pool table and my brain is an innertube and every dart just sinks me further until I drown. I don't know, I can't write metaphors when I'm this fucking sick either, I'm pissed about that too haha.
I have a nearly finalized suicide note and a cocktail of pills ready if I can't get my hands on a gun. I'm not meaning to say this for shockvalue. I'm honestly not even completely sure that survival instinct will not win over in the very end, but I hope it does not. I am not saying this because I hate myself, I'm not saying it from a place of hatred...
I'm telling you I want to die...out of a kindness for myself

I do not want to end up back in the psychiatric hospital (the last time I was there on hold for three days for the same reasons I'm coming to you today...all of the external stimuli made it impossible to sleep even after high doses of haldol they made me take, I felt like my skin was turned inside out, nerves electrified, a blowtorch applied to each individual cell of myself, it was the worst pain I've ever been in my life. I am experiencing a more diminished version now and it is still unbearable), so I will be sure I will succeed.

I am an insecure person, yes. But I know I am a kind person, I know I am a good person, I know I am moderately intelligent or at least used to be, I know I wouldn't have been a completely useless person. I know I am a happy person hypothetically, I know I am funny, I know I am weird in a sensitive charming way.
I know that my life would be worth living if this pain didn't exist, if I could sleep.
I know my pain probably is not the worst pain people have experienced every day while surviving, I know my life isn't the worst life that was ever lived, I'm just trying to say I'm not capable of enduring this any longer and even if I was, I wouldn't want to.


Most or all of you cannot help me in the sense I'm asking. But if you want to talk to me, I would be very grateful for any words.
 

VitamaN

Bluelighter
Joined
Sep 1, 2014
Messages
766
Location
D town
Hey... I watched my brother suffer from chronic insomnia and pills made it worse AND he died at your age...
I don't even look at his toxicology or autopsy record cuz I don't even wanna know. It doesn't matter. He's gone and it hurts.
I can't help you. I couldn't help him. All I can say is I'm sorry you have to endure this. I've seen what it does. I hope you make it out.
 

Echoing Whispers

Greenlighter
Joined
Oct 15, 2014
Messages
8
Hey. Have any doctors recommended rather than pharmaceuticals, certain foods to incorporate into your diet... Some to stay away from? I know the nutrition in some foods help induce sleep (e.g. melatonin), whilst in other foods, the chemical substances can actually limit the absorption of substances into the blood stream (e.g. phytic acid, gluten). Too much sugar would also have adverse effects on hormonal functioning, try eliminating sugar, take it easy on heavy carbs. I'd recommend keeping away from meds (as they disrupt the natural balance of the body) and incorporate natural alternatives on a long-term basis. Change your diet, make an effort to eat well (protein & fats), something positive will certainly come out of this, even if it doesn't cure your sleeping disorder.

It's true. Modern health care generally don't know what the fuck they are doing... Opinions rather than solutions. Look up Nora Gedgaudus, give her a skim, nothing to lose.
 

seawoven

Greenlighter
Joined
Oct 15, 2014
Messages
4
Hey. Have any doctors recommended rather than pharmaceuticals, certain foods to incorporate into your diet... Some to stay away from? I know the nutrition in some foods help induce sleep (e.g. melatonin), whilst in other foods, the chemical substances can actually limit the absorption of substances into the blood stream (e.g. phytic acid, gluten). Too much sugar would also have adverse effects on hormonal functioning, try eliminating sugar, take it easy on heavy carbs. I'd recommend keeping away from meds (as they disrupt the natural balance of the body) and incorporate natural alternatives on a long-term basis. Change your diet, make an effort to eat well (protein & fats), something positive will certainly come out of this, even if it doesn't cure your sleeping disorder.

melatonin supplements do not help me for some reason. I have incorporated many many "natural alternatives" throughout the years...
I am very very healthy and have spent years finding a healthy relationship with food and exercise. I eat very well.
And hey, I'm mostly anti-med too, but I wouldn't even be here to write this if they didn't exist in the first place. I only went on them because it was the only alternative.

It has not helped me significantly, but regular exercise and eating well has influenced me in positive ways i will not deny that...unfortunately this issue has gone far, far beyond that.

I believe that your advice could help a lot of people, but I have already pursued and maintained wellbeing in those aspects of my life and it has not bled over. I wish, more than anything, I wasn't some kind of exception.
 

seawoven

Greenlighter
Joined
Oct 15, 2014
Messages
4
Hey... I watched my brother suffer from chronic insomnia and pills made it worse AND he died at your age...
I don't even look at his toxicology or autopsy record cuz I don't even wanna know. It doesn't matter. He's gone and it hurts.
I can't help you. I couldn't help him. All I can say is I'm sorry you have to endure this. I've seen what it does. I hope you make it out.
thank you. I'm sorry you had to experience that
 

velmwend

Bluelighter
Joined
Jul 1, 2012
Messages
806
Sounds truly horrific. Where does the pain come from when you experience it? I have insomnia (not chronic) and my pain threshold drops dramatically when I've not slept.
 

Echoing Whispers

Greenlighter
Joined
Oct 15, 2014
Messages
8
melatonin supplements do not help me for some reason. I have incorporated many many "natural alternatives" throughout the years...
I am very very healthy and have spent years finding a healthy relationship with food and exercise. I eat very well.
And hey, I'm mostly anti-med too, but I wouldn't even be here to write this if they didn't exist in the first place. I only went on them because it was the only alternative.

It has not helped me significantly, but regular exercise and eating well has influenced me in positive ways i will not deny that...unfortunately this issue has gone far, far beyond that.

I believe that your advice could help a lot of people, but I have already pursued and maintained wellbeing in those aspects of my life and it has not bled over. I wish, more than anything, I wasn't some kind of exception.

I see. I think the most common explanation for certain substances not working is it being inhibited by another, or perhaps that a pre-cursor of some sort is simply not available. Many supplements are usually scams (either harmful or ineffective) and rely on their customers ignorance of physiological processes, the industry piss me off.

Grab a detailed book and deepen your understanding of physiology. I've made a recommendation in the post above, but perhaps one more tailored to sleep would be more suitable, assuming you haven't tried... Who needs Med School.

I'm sorry to say I don't know much about what actually goes on during sleep so wouldn't be able to help there. Wish you luck.
 

Ubi

Bluelighter
Joined
Oct 9, 2013
Messages
295
Location
North
Amitryptaline (spelling mistake)5 mg before bed. Assists R.E.M. Basically, once the body reaches rapid eye movement, it pulls us into a deep slumber hence the good nights rest. You will feel groggy in the morning but anxiety will decrease and so will, hopefully, the pain.
If the body aches do not subside, I suggest talking to your Dr. about a time release capsule that offers hourly doses over 12 hours. That way, you don't have to pop pills every few. Ask them about m-eslon 10 mg capsules. Works for me.
Cannabis too will help. and then there's always a more holistic approach but until your getting the sleep you need, you may need to address your issues with the stronger stuff.

It is about quality of life. your rights to having this. If your Dr. is not keen, find one who understands..
I also recommend finding a basic yogic template and get down on the floor and stretch, breath and stretch. Listen to you body and remember, less is more when stretching. Suggest basic Ashtanga Vinyasa mixed with Anusara method. Sun salutes are a great start though. Find a class and remember, modify to what your comfortable with. Healthy body brings a healthy mind
 

Bebenear

Greenlighter
Joined
Sep 14, 2014
Messages
27
Have you tried weed or a glass of wine? Also.. Maybe you're too healthy. I feel tired and sluggish when I eat like shit. I'm sorry this is happening to you. As someone who suffered from insomnia to a point where I would be up for days (no drugs) until I crash, I can understand a little. It sounds like your issue is worse.
 

THECATINTHEHAT

Bluelighter
Joined
Oct 17, 2005
Messages
7,381
I know this is an obvious one so don't flip, but I'm mentioning it because you don't really broach subject. What is your exercise reigime like? (specifically) Exactly what drugs are you using (legal and illegal)? What times of day do you eat? Have you tried a SAD lamp?

Give us a basic run-down of what your average day looks like in terms of your activities and the food/drink/drugs you consume. Don't give up yet, you're still young and your body will still be changing quite rapidly in terms of metabolism and circadian rhythms.
 

seawoven

Greenlighter
Joined
Oct 15, 2014
Messages
4
Amitryptaline (spelling mistake)5 mg before bed. Assists R.E.M. Basically, once the body reaches rapid eye movement, it pulls us into a deep slumber hence the good nights rest. You will feel groggy in the morning but anxiety will decrease and so will, hopefully, the pain.
If the body aches do not subside, I suggest talking to your Dr. about a time release capsule that offers hourly doses over 12 hours. That way, you don't have to pop pills every few. Ask them about m-eslon 10 mg capsules. Works for me.
Cannabis too will help. and then there's always a more holistic approach but until your getting the sleep you need, you may need to address your issues with the stronger stuff.

It is about quality of life. your rights to having this. If your Dr. is not keen, find one who understands..
I also recommend finding a basic yogic template and get down on the floor and stretch, breath and stretch. Listen to you body and remember, less is more when stretching. Suggest basic Ashtanga Vinyasa mixed with Anusara method. Sun salutes are a great start though. Find a class and remember, modify to what your comfortable with. Healthy body brings a healthy mind

I was on amitryptaline/elavil recently for over a month and it did not help at all, if anything it made it worse. Before that I was on luvox...they've put me on trazodone, zoloft, cymbalta and I'm blanking but at least three other things...I have a journal where I keep track of everything, my memory is completely ravaged by this and copious pot use to deal with it.

I do yoga. Yes, everyone, I smoke weed, if anything I depend on it too much nowadays, it helps me manage some of the pain but it does not help me sleep. yes, I use indica strains.
I abstain from alcohol because it has affected me poorly in the past.

I mostly weightlift at least 3x a week. I don't exercise too late in the day. I do cardio but not too intense for too long or else it runs my body down even more. I walk and I do yoga as well.
I do light therapy every morning when I can. I can tell you that even three+ months of regular light therapy and doing everything "right" did not make a difference. Yes, I'm irregular now because I need to sleep where I can or else I'm going to kill myself due to the severe pain.

Right now I was forced to take high doses of seroquel to pass out but it makes me feel really sick throughout the day and it does not make life worth living in any way. I just weaned off elavil because it did not work in the least. I think I'm still withdrawing from klonopin, but I"m not sure.

I don't really want to go into "specifics" with my exercise and my food because I've experimented for years and though I'm receptive to changes I'm 100% sure these things -are not- the cause of whatever the fuck is happening to me. And the number one most irritating thing for me is strangers telling me random things like "exercise more" or "eat more vegetables" like it's a miracle cure when I do everything I can. In the past I've even done elimination diets to find if any group of food was irritating my body specifically, I've been to a naturopath etc. I have an extremely low-sugar, whole-food, moderate carbs (mostly vegetables and quinoa) and moderate-high protein diet. I take probiotics, fish oil, vitamin D and a B vitamin. I've taken and tried a million other vitamins but I've found them to be mostly unnecessary and excessive so I stopped (this includes "natural" things for sleep like valerian, passionflower, kava etc. they never worked and I swear I give everything a chance for a long period of time).

I don't feel like I have a "circadian rhythm" anymore, it feels completely destroyed. For a while it seemed I had a severe form of delayed onset sleep phase syndrome...or non-24 sleep-wake syndrome, or whatever the fuck.
I got a tramadol prescription from the doctor yesterday, hopefully it will help. I also got a referral to a rhemotologist.
 

Ubi

Bluelighter
Joined
Oct 9, 2013
Messages
295
Location
North
okay. Well, I'm feeling a little reluctant to suggest this again but uh, seems you've tried allot already and no thing be working for ye. So, ask your doc about time release m-eslon low dose. it'll help you sleep, keep the pain at bay, all of it. ONly problem is, you will become dependant so weigh your pro's and con's seriously before considering. good luck
 

somethinghelp

Bluelighter
Joined
May 2, 2007
Messages
36
Please don't give up there HAS to be another option out there for you. I think there is a factor that you are not looking at so if I was you I would try to think about everything that I possibly could. I'm sure you've been to a neurologist, would be interesting to hear what he has to say. I think you need to think outside the box and look at things you never even thought could be a contributing factor. I went through something just like this for a short bit of time just a month maybe. I'm sorry but if doctors won't help you then there is seriously something wrong with the system. There MUST be a solution out there for you, keep looking. Don't give up, I will try to help you as much as I can. Also, Marijuana is very good for helping one sleep, preferably the high CBD kind. I believe that you may have grown a tolerance to sleep medication of all kind. Medicine is a very complex subject. I am more than willing to tell you everything I know or believe on the subject to help you. Obviously something is not right and I think the doctors need do something about it ASAP. I would try a regular hospital rather than a mental health faciltiy. This needs to be fixed and I believe that it can definitely be fixed. Even factors such as diet, excersize and air and water quality can be factors. I think you need to revise everything that you are doing in your life and then go from there. Sometimes when a person has too many obstacles against them it can hinder their chances of recovery, there are many things that we do not even look at in daily life that have huge impacts on our health and ability to recover.
 
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pentouch

Bluelighter
Joined
Dec 2, 2013
Messages
85
Your boyfriend needs to google all your symptoms all day,every day. Yes there are tons of info out there,you cant do it by your self,as you said ,a lot of bullshit out there. Is it a headache? I assume it is,I had insomnia,didnt have headaches tho..but sometimes slight pain in my temples occurred ,thats the tension headache..I know your case isnt about tension headache(also read closely now I understand you have body ache too). Its really confusing.
If understand right,your headaches appear only after not sleeping properly,or not sleeping at all,everyone says that sleep is good for you in the way that sleep kinda detox your brain from stress-chemicals(?)if this what leads to great pain you have,there are nerve problems ..but thats my wild guess. Cannabis is great pain reliever,but it doesnt help me sleep etither,I cant sleep when Im high,my thoughts race and it is frustraiting to fall asleep, so I smoke it not less than 4 hours before sleep.
I feel you on long periods of falling asleep,I cant understand how people around me fall asleep everywhere too,Im not very light sleeper,but Im hard to fall asleep..my problem is that once I fall asleep Im good..so my attention is very focused on when Im falling asleep and this blocks me from falling asleep,so its better to think of something nice and get your mind off the problem. Because you know,when you think of how you walk,you will have problem walking,and when you think of how you breathe you will have problem breathing..On second thought,I understand how people fall asleep easily ,thats how animals can do it too,they dont think about sleep,because they dont think about what sleep is ,they are not conscious about it.On the other hand we,me and you,think about it all the time,and we analyse it,we project our sleep,as a problemthat needs to be solved,and this is getting in our path to actually sleep. So thing that really helps me,is to think about something good,to believe in a dream,the perfect scenario,then I convince my self that I dont give a flying fuck if I sleep or not,because Im not slave to my problem,say fuck it(not in the rage way,but just calm and ready for anyway what will happen,with another words,let it slide) and then after this I let my brain just float around in autopilot,let it think wonder and think whatever,its like relaxing a muscle.
Sorry for my english,I could write it shorter,but its not my native language...
 
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