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gomenasai

gomenasai

Student
Sep 30, 2022
168
Neurological illness here (I wont go into detail) but a constant suffering/torture I can't cope with.

I am sorry you're in this boat. I can relate to your pain as I'm also in a very simular situation. Best wishes to you 🤗
 
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well2hell

Student
Nov 6, 2022
102
I am deeply sorry you are very severe. I am "only" severe and have been bedbound for almost two years, but ill for a very long time.

I follow all the research but I have given up hope. It's all pilot studies or studies that need replication or studies that show this is so complex we have no clue how to solve it. Not even OMF seem to be any closer than they were years ago when I started following them… and I mean, if they can't figure it out, no one can. Whatever happened to the IDO metabolic trap hypothesis? Whatever became of the nanoneedle? Not enough money… staff quitting… etc.

Very little money has been invested into ME/CFS because the BSP bullshit has held sway (and still does…) since forever. If I hear one more person telling me they don't "believe" in ME/CFS, or that I should do GET… I swear… I'll have a heart attack and drop dead.

I am lucky there's an ME-clinic in my country and I am a patient there. They teach pacing, prescribe Q10, B12 shots and LDN. But that's about it.

PS:
@well2hell

You mentioned being surprised there aren't more ME/CFS warrios here. I think patients tend to flock towards Facebook groups and forums such as s4me or Phoenix Rising. PR used to be very popular, but has gone cold lately.

I am a member of a Facebook group for severe patients and the topic of suicide is discussed very often. I don't think there is one single person in that group who hasn't comtemplated suicide… and not because they don't want to live, but because they CANNOT live.

ME/CFS kills. Just because we are breathing, it doesn't mean we live.
I am so sorry to hear about your situation, @Callie Arcale.

Wherever one finds themself on the spectrum of severity of ME/CFS, they are significantly disabled. Someone with so-called "mild" ME may be able to work but do nothing else than rest in their "free" time, and that is already a very difficult spot to be in. The severe, very severe and extremely severe ends of the spectrum are so incredibly disabling that they are unconceivable to those who have not been there, except for carers (at least the ones that understand ME). That speaks volumes.

With regards to biomedical research, I think there has been an uptick since the publication of the US Institute of Medicine's report in 2015 that was followed by a doubling of funding into ME/CFS research at the NIH. However, studies mostly remain about clinical observations, such as measuring orthostatic intolerance with tilt table testing or the 10 min NASA lean test and post-exertional malaise (PEM) with 2-day CPETs. What we are desperately missing is basic research to understand the biological underpinnings of the disease, and in particular PEM.

I will say about OMF that they are trying to do too much with too little resources. They list about 30 different projects on their website but they do not consistently provide updates on their progress, so we are left in the dark. Circling back to the previous point, I am sad to see that they went from wanting to collect as much biological data as possible and then formulating hypotheses off of these, to the opposite (for instance, the only grounds for the metabolic trap and the itaconate are theoretical). Alas.

I am not completely desperate about the current state of affairs, though. There have been two major advances lately.

First, the NIH intramural study, albeit small, was extremely thorough, covered many physiological aspects (79 researchers participated in the study) and has seemingly identified and detailed some problems like mitochondrial dysfunction. The results should be published in early 2023, and I hope it will bolster research into ME from other teams.

Second, the 25,000 participant strong, genome-wide association study DecodeME launched in September in the UK. Not only are the investigators very rigorous in their methodology, but among them are patients and carers who have worked hard to ensure that all patients with ME can participate easily — even the most severely affected ones. There is no better way to finding clues as to what causes ME than a properly designed genetic study because, where clinical observations may either be a cause or a consequence of the disease, DNA does not change throughout our lives so its implication in the disease can only be causal.

Those are the two hopes that I am clinging on to. The DecodeME team plans to release their first findings in early 2024, and whatever they find will lead to potential treatments. Unless my health completely tanks until then, I will be waiting for these results.

As for the biopsychosocial cabal, they have indeed been around for decades, but lately they have lost credibility. Health authorities in the US and the UK (IOM/NAM, CDC, AHRQ, NICE) now all agree that the scientific evidence they have provided (clinical trials) to support the use of graded exercise and "curative" CBT is of terribly poor quality. Even if one ignores the methodology, the objective outcomes are clear: these therapies do not lead to any improvement in daily step count (as a proxy for general physical activity), fitness, disability benefits, return to work / school.

These days, biopsychosocial advocates are just trying to hold on to what is left of their relevance by writing ridiculous "hit pieces" in medical journals that conveniently tuck the problems in their research under the carpet, or they contact journalists in their sphere of influence to do it for them. All of which get debunked as soon as they come out. Surely that indicates desperation on their end — after all, they have built their careers on this "deconditioning and unhelpful beliefs perpetuate the disease" model. The house of cards is crumbling and they're scrambling to hold the pieces together, no more, no less.

Sadly, they are why we only have pacing, rest and symptomatic medication (for pain, insomnia, orthostatic intolerance and MCAS) to date. Severe ME is even harder because literally anything makes you crash, so pacing, although an obvious necessity, fails most of the time. No wonder then that we seek the contact we crave for on Facebook groups and forums with people who understand and where we can talk about suicidal ideation. As you mentioned, it is a sick twist that we are in the opposite situation to many here on SaSu: we want to live so badly but are trapped in bodies that cannot bear the smallest bout of exertion.

ME/CFS indeed kills, and I hope this changes within the next 10 years. Whether we will be there to benefit from these potential changes is another question.
 
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Cantbereal

Student
Mar 20, 2022
189
Had a lot of issues throughout life but seems mold/mycotoxins which in uk aren't considered dangerous have destroyed my already compromised immune system. I am ordering N early Oct having saved up. I just hope it arrives & suffering can end.
I know mold caused a lot of my problems. Nobody believes it even family husband. I have fungus on every toe! Cant take antifungal meds is gonna take me out so painful! My gut is destroyed I weigh 103 lb from 180.
 
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tryingtoescape

tryingtoescape

Experienced
Dec 30, 2019
213
I want to die so much.
 
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Mlee75

Mlee75

...
Jan 2, 2023
67
Chronic pancreatitis. I've never had alcohol in my life, yet everyone always assumes I'm an alcoholic. I only drink water or sugar free drinks, everyone somehow thinks I'm diabetic. Doctors don't take me seriously. I eat baby food for all my meals because I can't handle real food. I decided to buy myself a cheeseburger and fries as a treat yesterday, barfed it all up while feeling a horrible stabbing pain from my pancreas attempting to digest itself. Every day is misery but nobody seems to care, always trying to get me to eat real food as if it won't (literally) kill me. I'm just so tired of the pain. It seriously hurts like hell and last night I thought I was going to die finally. But instead my body just puked up the undigested food to ease the pain.
I just wonder if having your gallbladder removed would help? I'm so sorry you're going through this pancreatitis is no joke
 
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yufei

yufei

Member
Jan 19, 2023
29
近视,眼镜那么贵。肥胖,未来的慢性病会找上你。由于腰板突出,我不能干重活。精神疾病,然后我的未来只会越来越糟,如果我算上一些压力引起的小问题
 
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jadednfree

Member
May 31, 2022
25
Sorry for what everyone has to deal with on a daily basis :(
I have 24/7 pelvic pain that makes it impossible to function. I writhe and cry all day. I also have POTS. I have more medical trauma than I ever imagined was possible.
 
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punkarmadillo

punkarmadillo

Member
Jan 18, 2023
50
I am medically complicated and medically fragile, my doctors are scared of killing me yet I can't seem to do a decent job of it.

I can't go into much detail as I fear outing myself.
 
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lili

lili

Specialist
Feb 17, 2022
319
I have a stomach condition where I can't eat almost anything. I've had it for a long time and it really adds to my depression. If this would only go away I think maybe I would feel much better to be able to eat more variety of foods. It's hard.

I also have bipolar and cptssd with borderline. And I have psychosomatic paralysis where if I get too stressed my body paralyzes or has a fake seizure thing. It's the worst.
 
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Kta1994

Kta1994

Experienced
Apr 25, 2019
252
I suffer from back pain and also stomach issues like gastritis and reflux since 2017,for 3 years i feel an intense pain in my intestines and bloating along with constipation, no doctor has been of help, also recently i developed tos due to a job that i was overworked beyond my abilities, i feel headaches everyday along with nerve pain on my neck going down to my fingers (right side), also after an antibiotic course i had for a suspected ist, i developed panic attacks and generalized anxiety, i dont know long im gonna be able to stay alive just to make my mom suffer less.
 
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Cleopatra123

Arcanist
Jun 8, 2019
487
I suffer from back pain and also stomach issues like gastritis and reflux since 2017,for 3 years i feel an intense pain in my intestines and bloating along with constipation, no doctor has been of help, also recently i developed tos due to a job that i was overworked beyond my abilities, i feel headaches everyday along with nerve pain on my neck going down to my fingers (right side), also after an antibiotic course i had for a suspected ist, i developed panic attacks and generalized anxiety, i dont know long im gonna be able to stay alive just to make my mom suffer less.
Sorry for all your suffering. Have you had extensive imaging of your brain and next Possibly a nerve disturbance that is affecting your digestive system. You need a good neurologist and gastroenterologist. Are you near an area where decent medical doctors are available? In the past few years since the development and extension of specialists people have had to go from MD to MD, waiting months and months and months to get seen and tested and perhaps be helped by a diagnosis. Now, people just suffer and suffer until the new is worse. Hope you can get the help you need. Have you had any infections in the past 6 years, since you've been ill since 3027?
 
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NickiStix

Member
Dec 13, 2021
60
Can anyone talk ?

I can chat if you send me a message.



Is anyone here planning on CBTing or going to a VAD clinic? Thanks and so sorry to hear about the suffering from everyone. :(
 
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Kta1994

Kta1994

Experienced
Apr 25, 2019
252
Sorry for all your suffering. Have you had extensive imaging of your brain and next Possibly a nerve disturbance that is affecting your digestive system. You need a good neurologist and gastroenterologist. Are you near an area where decent medical doctors are available? In the past few years since the development and extension of specialists people have had to go from MD to MD, waiting months and months and months to get seen and tested and perhaps be helped by a diagnosis. Now, people just suffer and suffer until the new is worse. Hope you can get the help you need. Have you had any infections in the past 6 years, since you've been ill since 3027?
I had a abdominal ct with contrast in 2020, since then nothing, my last colonoscpy was around that time too, im working right now with a neurologist, hopefully she can help me, if not im gonna CTB in less than a year bc this is not life.
And yes i did have food poisoning, thats what started my gi issues
 
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Cleopatra123

Arcanist
Jun 8, 2019
487
Sorry for all your suffering. Have you had extensive imaging of your brain and next Possibly a nerve disturbance that is affecting your digestive system. You need a good neurologist and gastroenterologist. Are you near an area where decent medical doctors are available? In the past few years since the development and extension of specialists people have had to go from MD to MD, waiting months and months and months to get seen and tested and perhaps be helped by a diagnosis. Now, people just suffer and suffer until the new is worse. Hope you can get the help you need. Have you had any infections in the past 6 years, since you've been ill since 3027?
Perhaps there is a possibility that the infections that caused
I had a abdominal ct with contrast in 2020, since then nothing, my last colonoscpy was around that time too, im working right now with a neurologist, hopefully she can help me, if not im gonna CTB in less than a year bc this is not life.
And yes i did have food poisoning, thats what started my gi issues
Perhaps the infection that caused food poisoning has not been completely cured. The symptoms in your intestines and colon are usually called IBS (irritable bowel syndrome), and requires dietary changes. Sometimes that, particularly bloating indicates your stomach is having trouble digesting because of the infection which may have damaged the tissue of the stomach or caused nerve damage to the stomach which is part of digestion. Someting has damaged digestive motility, the digestive activity needed to break down food to be excreted. I use a few homeopathic remedies for the same symptoms.
I can chat if you send me a message.



Is anyone here planning on CBTing or going to a VAD clinic? Thanks and so sorry to hear about the suffering from everyone. :(
Hello, is there still a private message page. If you'd like to chat, you can PM me there.
 
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lexion

New Member
Feb 14, 2023
2
I have been disabled from chronic fatigue syndrome since 2000. My illness has progressed to the point where I can not stay here. In the last few years I have developed unexplained nerve damage and nerve pain - my skin burns almost everywhere including my face. I can no longer sleep even with pain meds.
 
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K

koko

Member
Feb 26, 2023
18
I have had rheumatoid arthritis for 27 years, pituitary tumor removed 9 years ago, that left me with major complication. I lost all endocrine functions and ability to function and even lost apathy. I have PTSD From being abused as a child and bipolar. Sometimes I am in so much pain I can't take it which is a good chunk of why I will ctb.
 
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Cleopatra123

Arcanist
Jun 8, 2019
487
I have been disabled from chronic fatigue syndrome since 2000. My illness has progressed to the point where I can not stay here. In the last few years I have developed unexplained nerve damage and nerve pain - my skin burns almost everywhere including my face. I can no longer sleep even with pain meds.
There is no end treatment or cure now. The syndrome goes to the brain; now called ME/CFS. Myalgic encephalitis, CFS and really can disturb all organs and parts of the body.. There seems no end to any kind of suffering. So sorryfor your pain and I understand. Every day I wish to die, should have done it sooner when I had transportation and money. Do you have a temperature?
 
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cristaleyez

cristaleyez

xe/they/it
Feb 21, 2023
64
Diagnosed rheumatoid arthritis and fibromyalgia.
And a ton of mental conditions that I can't even begin to name.

I can't function when I'm in constant pain. On a regular day-to-day basis, I'm always a 4-6 on a pain scale. It's unbelievable to me that people are meant to be a 0 on a pain scale. Lately I've been leaning more towards 5-6.

I don't know how I'm supposed to live like this. Imagining life without this constant pain fills me with so much joy. And then reality kicks in again.
I want to go to college, but I'm wondering how in the world I'm gonna get around campus. Ugh. Able-bodied people don't even have to think twice about this. People don't realize how privileged they are sometimes.
 
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hellispink

hellispink

poisonous
May 26, 2022
1,230
Aside from being mentally sick, i have hypothyroidism, caused by antidepressants and probably an autoinmune disorder that i am still doing tests to find out what is it.
 
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l0stc4use

l0stc4use

lonely
May 6, 2022
115
i just recently found out i probably have hashimoto's disease which explains a lot of my physical symptoms Which does make me sad that i'll have to deal with this whole life
 
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L

lexion

New Member
Feb 14, 2023
2
There is no end treatment or cure now. The syndrome goes to the brain; now called ME/CFS. Myalgic encephalitis, CFS and really can disturb all organs and parts of the body.. There seems no end to any kind of suffering. So sorryfor your pain and I understand. Every day I wish to die, should have done it sooner when I had transportation and money. Do you have a temperature?
I have low body temperature. I truly believe I am infected, I have been on constant protocols with supplements and or antibiotics for years. Like you I feel I should have done it sooner.
 
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C

Cleopatra123

Arcanist
Jun 8, 2019
487
I have low body temperature. I truly believe I am infected, I have been on constant protocols with supplements and or antibiotics for years. Like you I feel I should have done it sooner.
Yes, low body temperature and shaking chills. Antibiotics won't work, may cause a fungal problem if taken too much.
 
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nosoul

Arcanist
Apr 1, 2023
454
I have had bipolar disorder and recently went overboard with dmt and cannabis, but cannabis use has been for decades.

Lately I've felt no joy and a decline in functioning due to lack of food and sleep.

I feel I'm just faking my interactions with people, going through the motions regarding my dogs.

I feel the best of life has passed me and my brain feels fried. No feelings from cigarettes or weed, eating like crap, but have 2 lovely dogs keeping me around.

I'm trying to get rest and eat but I'm unable to really eat and sleep and it's driving me mad.

I wanted to start a family and get a job but don't feel any passion or reward in getting anything done, can barely get through the day with just a few hours of medicated sleep.

I don't know what to do, fearful of ctb,but I feel mentally unable to keep a job atm.

I'm halfway wanting to get better, but my only income is ssd I just feel a long drawn out life of pain.

I've lost alot of weight recently and I worry about continuing physical and mental decline.

Maybe different than you all, I feel I have Noone to blame other than myself for experimenting and overdoing psychedelics, dmt mainly.

How can I meet someone and say have children if I'm such a zombie. It makes me so sad, I don't know what to do.
 
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nosoul

Arcanist
Apr 1, 2023
454
I have damaged my brain in an attempt to cure depression using Copious dmt. It was working for a while but it has taken away my ability to feel emotion, eat,sleep and my memory and ability to focus has been ravaged.

Because it is such a rare drug, nor much research exists, but it feels like the worst curse ever,going through life not being able to feel emotion, having no hunger, and it's my fault but the suffering is real. My mind is numb and I am forced. To take meds to get any sleep. Prior to this I felt healthy but now I feel compelled to ctb.

There are those of you who currently have it worse so I feel for you all. But I'm already breaking down,my psychiatrist just gave me meds saying it will help with sleep and eating but thus far it barely helps. I hate the feeling of being drugged up, and it just makes me more of a zombie.

Anyway, I feel this is a straight ticket to an early death and the gradual losing of mind, just wanted to vent, but I wish venting made me feel better:(

How are you all coping knowing you are degrading? I feel my dreams are gone, I used to have a cheerful personality, now I'm a shell of a person, makes me feel so trapped and already dead.

I'm working on a plan but I feel my time is near, I don't wish to prolong the suffering, I have no reaction to the most basic things like food, sex, unable to keep a job I feel, I wish I could dissappear.

Can't tell anyone else because they will prob send me to the hospital and never let me out.
 
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Endkrieg00

Endkrieg00

Member
Apr 18, 2023
5
In my case, I have been enduring my anxiety disorder and some sort of "Syndrome" that was diagnosed a long time ago and who knows if there is something else in this wrecked head of mine. Up to date I have been to put up with this things for more than 10 years or a "decade" if you look up in other way, in other words I was obliged to endure this things ever since I been a child.... Finally, with some things pilling out, dissappointment, tiredness, no hope for the future, ineffective drugs for my psychological "treatment" and with a mind of an adult, I come to the decision that I ultimately have enough.

By the way English is not my native language, so I sincerely apologize if Im not writing correctly in this idiom...
Thanks for reading.
 
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henry22

Member
Mar 31, 2023
91
Hi. Newly diagnosed last week though I've been having symptoms for months. Now I'm contemplating suicide. Very lost. Glad there's at least a chronic illness community.
 
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MiraiShisen

MiraiShisen

Student
Jun 15, 2023
146
HI, I have since my 16 birthday unknow genetic disease which is slowly altering my metabolism rate, after 11 years my metabolism is so slow that I barely eat, almost any food makes me feel like garbage, I can not even drink too much water because of it. I have kidney pain which radiate from back, also neck pain, headaches, my bones are like glass and I feel pain in them, cracking all the time. I have stomach pain. Since my metabolism rate went down I developed brain fog, chronic fatigue and serious deppresion. I spend most of my day in bed unable to do anything, I have trouble even to prepare for suicide because how I lack strenght, but I dont have any other choice, despite loving life I have to do this and its haunting me, my other option is wait until this kills me and I dont wanna suffer more I feel overwhelmed by life by burden that was put on me, I fought this health issues really hard and I believed that I will fix this but life is raw a cruel and I dont live in fairytale where everything turns to be good. I feel traped and I can not do anything about that, dont wanna die, dont wanna suffer and dont wanna suicide.
 
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