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Foresight

Foresight

Enlightened
Jun 14, 2019
1,397
Is there a way for an admin to make this a sticky thread?

For those of us with mental and physical disabilities, having to search it out takes a lot of our spoons (energy).
Hello, I agree with you. I took a look and found that under the Support Megathreads Compilation it's listed. I'm thankful to LastLoveLetter for their work there.

I have CFS and fibromyalgia, the fun illnesses that take everything from you and yet no doctors seem to care or know anything about it. Even worse are the ones who run useless blood tests just to say you're perfect and shrug you off.

I've been having intense pain episodes. Last night I ended up taking 50 mg tramadol and smoked some weed and finally got some sleep. Usually when the pain happens if I fall asleep I can escape it. Lately the pain has been so bad it's waking me up.

I lost a whole weekend day to a flare. Holding a full time job and sleeping all weekend because of flares is making me feel empty inside. I barely make it through the workweek, then chores, and that's all I got. It turned me into a shell with no hobbies or activities. That really saddens me. I hope I can gain some energy somehow. I really doubt it.
 
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Cleopatra123

Arcanist
Jun 8, 2019
487
So I'm not alone in all these symptoms, and more.as you and Ophelia. I have such trauma eating, from swallowing to the end that I'm down to 85 pounds, the last of real skin seems to be melting and I'm getting sores from being in bed, sitting on a bed so old it now has hard lumps in it from morning till night. Can't sit in a chaiir, hard to walk, diagnosed with ME?CFS for 40 years and and it's eating alive most of my intermal organs, one by one. The daily grind of getting to subdue of all the systems disburances from eyes to mouth tp throat and heart and neurologically, 40 years and doctors don't believe this stuff.

I'm very sorry for what you are suffering and understand well why you are here. The only way to eliminate disintegrating life, or get any person to believe us is so painful. Death with dignity is where we need to be, at peace. Hugs to you, and all suffering with no help or resolution.
 
FuneralCry

FuneralCry

She wished that she never existed...
Sep 24, 2020
33,762
I suffer from tinnitus and visual snow as a result of brain damage. Whice medication did not work for you and whice has?
I don't really think that theres any medication that could help tinnitus and visual snow from what I know. I'm sorry you are in this situation. It's awful how our bodies can torture us. Best wishes.
 
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Cleopatra123

Arcanist
Jun 8, 2019
487
So I'm not alone in all these symptoms, and more.as you and Ophelia. I have such trauma eating, from swallowing to the end that I'm down to 85 pounds, the last of real skin seems to be melting and I'm getting sores from being in bed, sitting on a bed so old it now has hard lumps in it from morning till night. Can't sit in a chaiir, hard to walk, diagnosed with ME?CFS for 40 years and and it's eating alive most of my intermal organs, one by one. The daily grind of getting to subdue of all the systems disburances from eyes to mouth tp throat and heart and neurologically, 40 years and doctors don't believe this stuff.

I'm very sorry for what you are suffering and understand well why you are here. The only way to eliminate disintegrating life, or get any person to believe us is so painful. Death with dignity is where we need to be, at peace. Hugs to you, and all suffering with no help or resolution.
OMG! I have EXACTLY THE SAME THINGS/PROFILE. Same DIGESTIVE, from mouth (infected) all the way down. Am down to 85 lbs. Trembline and difficult to walk. HARD LUMBS Iin my bed. Like be bed of nail, and at threat of loosing that, even my roof. No help at the hospital yesterday, doctors are blind and insufficiently educated. Yes, eyes, heart and neurologically> I feel crucified, yet I am no profit. I KNOW EXACTLY HOW YOU FEEL. I hope you have some help. I tried to go suspecting things getting worse, but couldn't get it together. Too bad we can't get together and present ourselves for research!!!! I'm also, very sorry for you, I DO UNDERSTAND, (am also a retired nurse). I hope we can help each other in some way Ophelia. Want to talk on PM?
 
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AliceTheGoon

Specialist
Jul 1, 2022
359
I have CFS and fibromyalgia, the fun illnesses that take everything from you and yet no doctors seem to care or know anything about it. Even worse are the ones who run useless blood tests just to say you're perfect and shrug you off.
I'm in a similar boat syndrome-wise...doctors have no interest in dysfunction downstream of biomarkers. And if doctors don't care then the public doesn't care. Just curious, did your symptoms come on suddenly?
 
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sewercide

sewercide

drowning in the sewer
Aug 13, 2022
84
I don't really think that theres any medication that could help tinnitus and visual snow from what I know. I'm sorry you are in this situation. It's awful how our bodies can torture us. Best wishes.
I red that lamotrigine can help some. I hope. I will try it before I ctb.
 
OpheliasFlowers

OpheliasFlowers

Specialist
Apr 2, 2019
348
OMG! I have EXACTLY THE SAME THINGS/PROFILE. Same DIGESTIVE, from mouth (infected) all the way down. Am down to 85 lbs. Trembline and difficult to walk. HARD LUMBS Iin my bed. Like be bed of nail, and at threat of loosing that, even my roof. No help at the hospital yesterday, doctors are blind and insufficiently educated. Yes, eyes, heart and neurologically> I feel crucified, yet I am no profit. I KNOW EXACTLY HOW YOU FEEL. I hope you have some help. I tried to go suspecting things getting worse, but couldn't get it together. Too bad we can't get together and present ourselves for research!!!! I'm also, very sorry for you, I DO UNDERSTAND, (am also a retired nurse). I hope we can help each other in some way Ophelia. Want to talk on PM?
@Cleopatra123 I would love to talk and share, and hopefully help support each other. It's so so so very hard to live like this, with daily physical suffering and with the mental illness(es) and symptoms on top of that and then on top of all THAT...like you said, the doctors don't care. I've been through literal decades of being fobbed off by disinterested, and oftentimes condescending, doctors. You lose hope and motivation to continue trying after awhile, especially when you feel so alone in what you're going through. My heart goes out to you for all YOU'RE going through. Thank you for your kindness and understanding, although I'm so sorry you do understand. Please PM me. Sending you love and support. :heart:
 
Foresight

Foresight

Enlightened
Jun 14, 2019
1,397
I'm in a similar boat syndrome-wise...doctors have no interest in dysfunction downstream of biomarkers. And if doctors don't care then the public doesn't care. Just curious, did your symptoms come on suddenly?
I got into an awful car accident in 2017 and within a few months I was bedridden. Somebody t-boned me. No injuries were found at the time other than a sprained wrist. I've read in the past that emotional trauma + physical trauma is often associated with the development of CFS and fibro.

I feel like death today. Lost my whole weekend and all I have to look forward to is more work and another failed weekend of being locked in bed.

Can't continue with this quality of life.
 
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ropegirl

Member
Aug 20, 2022
7
This is my first time posting and I'm not even sure if this thread is still being watched but for the past forty (plus) years I have suffered with an incurable bowel condition which has resulted in numerous major surgical operations. As well as this I also suffer from bone disease and due to recurrent urinary tract infections I now have stage three kidney disease. Even though I am relatively heathy at this moment in time I just know that it will not be long before I am in serious need, yet again, of medical intervention and I just do not know how much more illness I can take or rather how much more illness I am prepared to take.
 
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Cleopatra123

Arcanist
Jun 8, 2019
487
@Cleopatra123 I would love to talk and share, and hopefully help support each other. It's so so so very hard to live like this, with daily physical suffering and with the mental illness(es) and symptoms on top of that and then on top of all THAT...like you said, the doctors don't care. I've been through literal decades of being fobbed off by disinterested, and oftentimes condescending, doctors. You lose hope and motivation to continue trying after awhile, especially when you feel so alone in what you're going through. My heart goes out to you for all YOU'RE going through. Thank you for your kindness and understanding, although I'm so sorry you do understand. Please PM me. Sending you love and support. :heart:
Hello friends, for no one else will understand us. Please, all suffering from these increasingly toxic and debilitating symptoms, BE FOREWAARNED. I think I've waited too long. Don't WAIT TOO LONG. You find yourself looSING little things, WHICH GET SMALLER AND SMALLER, until the little pleasures even themselves cause distress, LIKE FOOD FOR EG. As a few times nurse in nursing homes, it's not a pretty picture, and when they lift the guardrails, THERE'S NOTHING LEFT TO LIVE FOR AND LOOSE. HUGS
 
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Nolife62

Member
Aug 23, 2022
84
I haven't posted in a long time, but have really suffered from what I believe to be sciatica. For weeks at a time I am bedridden, barely able to move and in so much pain. I have to have help wiping my own ass and it is shameful and miserable. I haven't been able to get disability and doctors won't take it seriously. I feel so lost and broken in body and mind. I just want help, and no one will help me. It feels like my body is a prison and no matter what I do, I can't escape.

Not to mention PTSD, psychosis, autism, and general anxiety and depression.
I too have many conditions that are endless. I'm replying to your post too try and give you a little of your dignity back, I also have digestive issues and had to jump in the shower every time I had a bowel movement which is depressing enough, during the toilet paper shortage I purchased a bidet and it was a game changer (that's sad I know) but I don't have to jump into the shower anymore or use a lot of TP and I don't have to ask for help..
 
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No pain control

Member
Jul 12, 2022
10
I'm incredibly grateful for this thread.

Yesterday my father decided to mock me as I was writhing on the floor in absolute agony from my disease, begging for death. My arms are failing me, I can't stop shaking, I'm going blind, my skin and eyes and lips are drying out, my hair is turning completely white, and my veins feel like they were injected with sulphuric acid (in addition to so many other things). I'm suffering so much and the only people I can turn to for help look down on me as though I were a grease stain on their floor.

I just want to die. Why can't I die? Why do I have to be tortured? I've never wanted to hurt anybody, so why do people get off scot-free hurting me?

If I go to a care home I know the nurses will abuse the everloving shit out of me. Even though my mother frequently visited me in the ICU after my accident I still had to deal with some nasty ones.

If I'm sectioned I'll just be forced to do useless shit like throwing a frisbee at the center of the room (because omg guyzzz the cure for depression is dat simple!!11!!one) and then be confined to a room for the rest of the day in a rock solid bed while staring at a blank wall for hours on end. That's literally all they offer at those places.

People act like I'm crazy for feeling this way… but could you honestly say that you'd be happy living the way I'm forced to live? If I were healthy none of this would be an issue and I could've just continued living happily alongside my family, but that's not how life works. No doctors are willing to help me or provide me with the necessary treatments/surgeries required for me to function and survive (in part due to my shitty insurance), and despite everything I've tried I can't help myself on my own.

My doctors want to put me on psychiatric meds. How is that supposed to help with a PHYSICAL condition??? To top it all off, I'm allergic to 99% of them, and one made me jump off of a building.

I just don't know anymore. I'm so, so tired. I just want to disappear. I'm sick of being here.

I wish I lived in Canada. Then I'd at least have MAiD to look forward to. How ironic is it that I live on the same continent, but am instead confined to this repulsive "second world" nation known as America.
If I could still be a nurse I would treat you with the compassion and respect that you deserve. But I can't be a nurse anymore because of this incredible pain. You are a smart and sensitive person and I don't think your parents or at least your dad realize how precious you are. You are an amazing writer. You express yourself well and I sure can relate. I really feel for you. You are right about psych meds being prescribed for a physical condition. ANYBODY would have mental issues if they had to deal with such physical distress.
 
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neoyokio

Member
Oct 16, 2022
36
I have severe screen/scrolling induced nausea due to migraines so its hard to look at many anwers but I feel all of you and send my love and comisseration. severe migraines and gastrtitis, severe fatigue for 11 years due to undiagnosed lyme and mold poisoning. on ad on, brain fog depression many cognitive issues and difficulty with anxiety, how could you not. countless symptoms. i wish it was easier to look at the screen becuase i want to comisserate with you all.
 
whitefeather

whitefeather

Thank the gods for Death
Apr 23, 2020
501
I filled my RX for medical aid in dying. Anyone else here ?
 
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Sad_Sack

Experienced
Oct 3, 2022
261
I x
,

I am severly sick for 3 years. Every seocond is torture and hell.. is suffrer from Depression and strange psychosomatic Sensations in my body since i was 13. 3 years ago and had a breakdown due to a bad reactions to an antidepressant and severe stress.. my brain is just Fried,
I suffer from:
Chronich Dissociation
Sever Depression Transmitter Swings
Complete Emotional Numbness
Agony pain all over my whole body
Severe pressure in my body
Feeling like i choke every sec, hardcore problems breathing
Brain deadness, everything is a blurr.. i cant think like a normal Person .. i feel like a zombie
My body is so stiff i cant move proberbly, it is like a qm paralyzed physical mentally and emotionally

Every breath hurts, it is hard to talk. It feels impossible to exist.
I gave 3 years all i had but i dont recover. And I have enough.
I dont know if you are still a member here but damn thus sounds so much like what Ive been dea!ing with for the last 30 years. All of it. What really caught my attention is the breathing and feeling like your choking and the weird stiffness. I have that so bad at this point. Its like my breathing muscles are malfunctioning and my ribs won't expand. I move like a freaking robotand my hands won't work right anymore. Tons of pain in my muscles, nerves and spine. The mental stuff is me to a tee as well. Have you found any answer? I hope you are feeling better.
I have severe screen/scrolling induced nausea due to migraines so its hard to look at many anwers but I feel all of you and send my love and comisseration. severe migraines and gastrtitis, severe fatigue for 11 years due to undiagnosed lyme and mold poisoning. on ad on, brain fog depression many cognitive issues and difficulty with anxiety, how could you not. countless symptoms. i wish it was easier to look at the screen becuase i want to comisserate with you all.
I'm sorry for your suffering. Can I ask how you found out you had mold poisoning? Does that last once you are away from the mold? I am looking for answers to my health issues and have wondered about mold.
 
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well2hell

Student
Nov 6, 2022
102
Damn, that's a long time. How severe are you?
I came to this topic expecting to see posts from a few people suffering from ME/CFS (myalgic encephalomyelitis / "chronic fatigue" syndrome). After all, the rate of suicide among ME/CFS patients is suggested to be around seven-fold higher than that of the general population. This is not surprising as quality of life with ME/CFS is lower than in other severely disabling chronic illnesses like cancer, rheumatoid arthritis and long term mental health conditions:

B55C014F C3F0 473B B2FB EA5FF6154E33

But it is an awfully sad state of affairs that people who yearn to live — that is, they dream of doing many activities — are sequestered in a dysfunctional body that punishes them for any exertion, and yet they are neglected by medicine.

They cannot get the care and support they need and ultimately resort to suicide. And, to be fair, adequate care for very / extremely severely affected patients (i.e. bedridden 24/7 in a dark and quiet room, unable to communicate and tolerate light, sound, touch, and usually tube fed) just enables them to stay alive. It does not usually restore physical or cognitive function, or when it does, it takes a long time (months or more commonly years) for marginal improvements to appear.

Unfortunately, medical research on ME/CFS is woefully underfunded so it is progressing at a snail's pace. It will take at a bare minimum five years for an effective and safe treatment to be developed, but more realistically ten or fifteen since next to nothing is known about the biological underpinnings of the disease. In the meantime, more people with ME/CFS will be taking their lives.

Personally, I have very severe ME/CFS and I do not want to end my days. I just wish that a treatment will come around sooner than later, so that I can finally stand upright again, get out of bed and do the things I want to do (just a brief walk outside would be marvelous). But having the knowledge and the equipment to cease my suffering in a peaceful way, should it continue to worsen and reach an absolutely unbearable point, is reassuring.
 
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Smart No More

Visionary
May 5, 2021
2,730
I came to this topic expecting to see posts from a few people suffering from ME/CFS (myalgic encephalomyelitis / "chronic fatigue" syndrome). After all, the rate of suicide among ME/CFS patients is suggested to be around seven-fold higher than that of the general population. This is not surprising as quality of life with ME/CFS is lower than in other severely disabling chronic illnesses like cancer, rheumatoid arthritis and long term mental health conditions:

View attachment 101030

But it is an awfully sad state of affairs that people who yearn to live — that is, they dream of doing many activities — are sequestered in a dysfunctional body that punishes them for any exertion, and yet they are neglected by medicine.

They cannot get the care and support they need and ultimately resort to suicide. And, to be fair, adequate care for very / extremely severely affected patients (i.e. bedridden 24/7 in a dark and quiet room, unable to communicate and tolerate light, sound, touch, and usually tube fed) just enables them to stay alive. It does not usually restore physical or cognitive function, or when it does, it takes a long time (months or more commonly years) for marginal improvements to appear.

Unfortunately, medical research on ME/CFS is woefully underfunded so it is progressing at a snail's pace. It will take at a bare minimum five years for an effective and safe treatment to be developed, but more realistically ten or fifteen since next to nothing is known about the biological underpinnings of the disease. In the meantime, more people with ME/CFS will be taking their lives.

Personally, I have very severe ME/CFS and I do not want to end my days. I just wish that a treatment will come around sooner than later, so that I can finally stand upright again, get out of bed and do the things I want to do (just a brief walk outside would be marvelous). But having the knowledge and the equipment to cease my suffering in a peaceful way, should it continue to worsen and reach an absolutely unbearable point, is reassuring.

I've been wondering for while now, if what I have is cfs. Massive cognitive defecit, unrefreshing sleep, been essentially bed bound for two years. There's other symptoms though that I'm not sure fit. Dryness throughout my system. Drinking liquids isn't refreshing and causes a weird rebound reaction of serious cotton mouth. What I'd describe as nerve pain and disphoria in my hands and forearms. Joints in my hands became really painful and my muscle hurt in a way that's unlike any natural muscle pain I ever felt. All the joints I could once stretch and click are now really stiff and I can stretch it out and click them (seems tied to the dryness thing). Stomach issues have been a real issue and my abdomen and back (kiidney area) is really stiff and painful.

All came following a period of nasty illness. I'd be really interested to hear whether you see anything familiar in those symptoms.
 
whitefeather

whitefeather

Thank the gods for Death
Apr 23, 2020
501
I have encountered multiple members here who, like myself, have chronic conditions and illnesses. I have met members here with a variety of physical diseases (chronic, terminal or otherwise).

I thought it would be useful to have a specific thread for that and a space where people can talk about their conditions (and how they cause or contribute to suicidality), vent and support one another. This is also an opportunity to connect with other members who may be experiencing similar struggles.

For those who have not seen my posts: I'm Persephone. I have a permanent physical disability (that I cannot disclose publicly for privacy reasons), CFS/ME, suspected fibromyalgia, possible rheumatoid arthritis (I am still undergoing tests to determine this), chronic IBS, post impairment syndrome, Raynaud's phenomenon and chronic muscle, joint, nerve and back pain, ongoing genital pain and fibroids, recurring headaches, breathing problems, sleep apnoea, shortsightedness and other visual issues. I also struggle with multiple mental illnesses in addition to this. Navigating complex illnesses and disabilities is a constant uphill struggle, often alienating, ostracizing with no hope or reward in sight and very few people who understand.

If you are dealing with chronic illnesses, physical disabilities or any sort of physical condition (diagnosed or undiagnosed), please feel free to post how you are doing, vent your frustrations and share as much or as little as you feel comfortable with.

I will monitor this thread to ensure it stays on topic and is a safe, supportive space for those who participate.
 
jackie_boy1337

jackie_boy1337

Member
Nov 5, 2022
77
I had no serious health issues to speak of most of my life.
In October 2021 I developed severe, accute, stress-related insomnia that kept me awake for 3-5 days at a time for about a year and one month.

That alone completely annihilated my health, and the complications stemming from that period of time have made my life absolutely unbearable.

Heart attack/stroke, tinitus, hearing "chitter chatter", gaps in memory for periods of time, chronic fatigue, chronic pain (much life a "pinched nerve" sensation in different parts of my body) along with a general body ache I haven't found a way to get rid of.
I had to quit my job because it all became too much to bear and therefore lost my health benefits, so I haven't been able to seek medical assistance because I don't qualify for publicly-funded programs.

All the symptoms combined have become so much that I honestly don't really care anymore, and even if I started receiving 5-star medical treatment tomorrow, there's no amount of medications, surgeries or physical therapy that could ever turn me back into the relatively happy, healthy person I was before.

My one question still remains: How the hell does this not qualify me for the assisted suicide program in the US??
Blows my mind.
 
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well2hell

Student
Nov 6, 2022
102
I've been wondering for while now, if what I have is cfs. Massive cognitive defecit, unrefreshing sleep, been essentially bed bound for two years. There's other symptoms though that I'm not sure fit. Dryness throughout my system. Drinking liquids isn't refreshing and causes a weird rebound reaction of serious cotton mouth. What I'd describe as nerve pain and disphoria in my hands and forearms. Joints in my hands became really painful and my muscle hurt in a way that's unlike any natural muscle pain I ever felt. All the joints I could once stretch and click are now really stiff and I can stretch it out and click them (seems tied to the dryness thing). Stomach issues have been a real issue and my abdomen and back (kiidney area) is really stiff and painful.

All came following a period of nasty illness. I'd be really interested to hear whether you see anything familiar in those symptoms.
I will start by saying that ME/CFS is a misnomer because it is not characterized by chronic fatigue, a symptom which is present in many other chronic illnesses.

Above all, the core symptom of ME/CFS is post-exertional malaise (PEM), which is a worsening of symptoms (and/or appearance of symptoms) after any physical, cognitive or sensory exertion* that is disproportionate to the activity in question.

PEM is peculiar in that it almost never happens right after an activity but is delayed by a day or two (24-48h, more rarely up to 72h). Most people with ME/CFS describe PEM as a "crash", wherein they feel as though they have come down with a bad bout of flu combined with a hangover and jet lag.

If you cannot identify a pattern where activity, be it physical or cognitive, causes PEM as described above, then it is very likely that you do not have ME/CFS.

What attracted my attention most of all was your mention of a trigger - the "nasty illness" which you pinpoint as the onset of your symptoms. ME/CFS is triggered by an infection in about 60-75% of cases, the most typical example being infectious mononucleosis / glandular fever, but also Covid (see e.g. long Covid) and SARS, swine flu (H1N1), Lyme disease, Ross-River virus, giardiasis, etc.

Cognitive impairment and unrefreshing sleep (as well as modification in sleep patterns/structure) are required symptoms for the diagnosis of ME/CFS, so this does ring a bell.

As for your muscle pain, does it feel as if they are burning with lactic acid, not unlike working out at the gym? And does muscle fatiguability come on quickly when you exert yourself physically? Those two elements are the "myalgic" part of "myalgic encephalomyelitis" (ME).

What are your stomach issues? Do you struggle to digest food, i.e. it stays in your stomach for hours after you eat a meal and you are very nauseous or even vomit? This would be gastroparesis, which some people with severe ME/CFS suffer from.

Arthralgia (joint pain) is not a characteristic symptom but some people with ME/CFS have it. But note that it is not an uncommon symptom, generally speaking, so it can be due to other causes and it is worth investigating differential diagnoses.

What I cannot relate to ME/CFS in your description is the sensation of dryness. The only condition that I know of where dryness is a characteristic feature is Sjögren's syndrome, an autoimmune disease, and some of its symptoms overlap with those of ME/CFS.

I hope this helps; please also see the National Academy of Medicine's diagnostic criteria for ME/CFS (endorsed by the CDC), and let me know if you have other questions.

* Exertion =/= exercise: exertion can be any task in your daily life, such as working, walking, socializing, or in more severe cases reading, brushing your teeth, standing up, etc.
 
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Smart No More

Visionary
May 5, 2021
2,730
@well2hell Thank you for that. I really appreciate the effort you put in to outlining things in detail, in no uncertain terms. I'm kind of burned out right now but will return to answer you post in greater detail. For the time being I will say that my symptoms are very much in line with what you described there however the dryness thing does stand out as unusual and kind of throws a wrench in the mix. Though I may be able to offer up some logical speculation on it.

I'm going to rest up and then come back to reply more extensively but honestly, I want thank you so much for engaging with me. I don't want to inadvertently end up hijacking this thread by going on about myself. I may send you a brief private message if that's cool with you but there's no expectations or pressure for replies.
 
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knightxenon

Hope fading
Nov 5, 2022
19
Since i was 16 i am suffering from anyklosing spondalytis..after 13 years it left me disabled...somehow i completed my high school but couldn't complete graduation...last 5 years was hardest..i became bed ridden and had to replace both hips...now i can walk but not more than 15 min....cant work....in debt...my father looks after me...being 29 now i dont know how i will survive if i can't work and cant pay all the debt i am in...living in a overpopulated country with so much unemployment...dont really know anymore
 
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well2hell

Student
Nov 6, 2022
102
@well2hell Thank you for that. I really appreciate the effort you put in to outlining things in detail, in no uncertain terms. I'm kind of burned out right now but will return to answer you post in greater detail. For the time being I will say that my symptoms are very much in line with what you described there however the dryness thing does stand out as unusual and kind of throws a wrench in the mix. Though I may be able to offer up some logical speculation on it.

I'm going to rest up and then come back to reply more extensively but honestly, I want thank you so much for engaging with me. I don't want to inadvertently end up hijacking this thread by going on about myself. I may send you a brief private message if that's cool with you but there's no expectations or pressure for replies.
You're welcome — I'm glad this was helpful. Please take all the time you need and do not hesitate to send me a message if you would like to.

As for the dryness, I mentioned Sjögren's as a disease on its own but it can be comorbid with ME/CFS. I know a handful of people who have both, including someone who received medical aid in dying, and generally ME/CFS can occur along with other autoimmune diseases. Telling the difference is not easy, but what should guide any patient and any clinician is the presence or absence of the hallmark symptom, post-exertional malaise, as described in my previous post.

Edit: beyond the typical delay of onset of PEM of 1-2 days after exertion, I forgot to mention its other essential characteristic: these crashes need a prolonged time to recover from — at the very least one day, but much more commonly a few days, or even weeks or months in case of bad crashes.

Sometimes, crashes are irreversible. This often happens when people with ME/CFS are told to gradually increase their activity while ignoring the symptoms that arise from it, which graded exercise therapy and the "special" version of CBT for "chronic fatigue" aim to achieve.

Those two therapies were the standard of medical care for decades and they have harmed millions of people with ME/CFS — e.g. making them go from able to work part-time to housebound or bedridden —. They are based on shoddy science that has been thoroughly debunked, such that health authorities in the US and the UK now contraindicate them, and of course they have been widely denounced by patients.

Instead, what is advised is careful energy management so that patients do not exceed their energy limits and thus trigger PEM (this is called pacing), along with plenty of rest.
 
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Callie Arcale

Callie Arcale

It’s a tale told by an idiot signifying nothing
Feb 10, 2021
787
I came to this topic expecting to see posts from a few people suffering from ME/CFS (myalgic encephalomyelitis / "chronic fatigue" syndrome). After all, the rate of suicide among ME/CFS patients is suggested to be around seven-fold higher than that of the general population. This is not surprising as quality of life with ME/CFS is lower than in other severely disabling chronic illnesses like cancer, rheumatoid arthritis and long term mental health conditions:

View attachment 101030

But it is an awfully sad state of affairs that people who yearn to live — that is, they dream of doing many activities — are sequestered in a dysfunctional body that punishes them for any exertion, and yet they are neglected by medicine.

They cannot get the care and support they need and ultimately resort to suicide. And, to be fair, adequate care for very / extremely severely affected patients (i.e. bedridden 24/7 in a dark and quiet room, unable to communicate and tolerate light, sound, touch, and usually tube fed) just enables them to stay alive. It does not usually restore physical or cognitive function, or when it does, it takes a long time (months or more commonly years) for marginal improvements to appear.

Unfortunately, medical research on ME/CFS is woefully underfunded so it is progressing at a snail's pace. It will take at a bare minimum five years for an effective and safe treatment to be developed, but more realistically ten or fifteen since next to nothing is known about the biological underpinnings of the disease. In the meantime, more people with ME/CFS will be taking their lives.

Personally, I have very severe ME/CFS and I do not want to end my days. I just wish that a treatment will come around sooner than later, so that I can finally stand upright again, get out of bed and do the things I want to do (just a brief walk outside would be marvelous). But having the knowledge and the equipment to cease my suffering in a peaceful way, should it continue to worsen and reach an absolutely unbearable point, is reassuring.

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.
 
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