Falling apart - Chronic Fatigue Syndrome

Keendog

Professional
I've probably seen more people with this problem than anyone on this board and here are my conclusions:

1) CFS is not a single diagnosis. It's a grab bag term for a number of different issues that cause fatigue
2) Some treatable conditions need to be ruled out such as depression, MS, cervical spondylosis, hypothyroidism, hypopituitarism, cancer, connective tissue disorders, diabetes, cardiomyopathy, Obstructive sleep apnea, etc
3) most causes will be untreatable and related to neurobiological reactions to infections, mitochondrial dysfunction, or unknown causes.
4) most remedies are of dubious benefit and ensuring a healthy lifestyle including exercise to tolerance is important to maintain some stamina


Outcome is entirely variable and dependent on the mechanism and the patient's mental health. Those that sink into depression with this condition inevitably have far worse outcomes than those that maintain positive attitudes. Unfortunately negativity is hard to reverse course on as it's often personality driven.
How many would you say manage to recover? What was their treatment plan, pharmaceutical, physical therapy, psychology etc?
 

Harry_Wild

G.O.A.T.
Well, when I am down right sick and weak, I go all out on the highest price meats that I can buy like Prime grade ribeye steak $20+ a lb., fresh wild salmon, wild bass, extra large unfrozen shrimp precooked recooked in butter and loads of freshly made mash potatoes like a quart of it. I recover fast after consuming those tasty meals that are marvelous treats. I found out spending $150 on food and cooking it at home is much better then dining out and their food might not be as fresh and you don’t get the quality nor the quantity one desires either. It cost 3X more too.
 
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I've been getting pretty ill lately, all tests come back negative and CFS is what I'm battling day to day. Given up on comp but still try to hit socially. Moved to a part time job working from home 19 hrs a week but even that is a bit much. I need to nap in the middle of each work day to get through.

Lately I've been feeling quite weak and have some injuries and pain building up and just generally feel like my life is slipping away as I seem to be getting worse.

I guess I don't know what my question is, does anyone have any direct experience? Something to give me hope at least. The prognosis for anyone who has cfs and had every other possible cause eliminated is very poor. I'm only mid 30's
I'm so sorry to hear this, bro. I can't give any better medical advice than others have here. All that I can say is that you are not alone and my thoughts and prayers are with you. I truly hope that you will recover in the future.
 

ollinger

G.O.A.T.
Every mL of alcohol kills brain cells, damages liver, cirhossis, causes bowell cancer, lowers sperm count. And that is before you consider social harm from alcohol.
Most people drink at least a little and don't seem to wind up with cirrhosis, so lets' not be overdramatic here. Lowering sperm count seems a good thing to me, but here again, we've never heard of social drinkers being unable to reproduce. The only thing I'd agree on is that there's probably no clearly safe dose of alcohol that can't have at least a very slight effect on raising cancer rates, but with modest drinking the effect is extremely small
 

Dartagnan64

G.O.A.T.
How many would you say manage to recover? What was their treatment plan, pharmaceutical, physical therapy, psychology etc?
I think the post viral ones are probably close to 50%. The ones with mental health issues, chronic pain and CFS it's a lot closer to 0%.

The treatment plan is generally focus on nutrition, sleep and exercise and managing mental health. Not much else you can do when you don't have a physiologic process to clearly target.

Every mL of alcohol kills brain cells, damages liver, cirhossis, causes bowell cancer, lowers sperm count. And that is before you consider social harm from alcohol.
Well aren't you the Quaker. Lots of social drinkers without any of those things. Pretty sure I've never seen significantly raised health issues in someone that had one oz of alcohol daily. And they probably fared better socially than teetotallers do.
 

Grip n Rip

New User
Well aren't you the Quaker. Lots of social drinkers without any of those things. Pretty sure I've never seen significantly raised health issues in someone that had one oz of alcohol daily. And they probably fared better socially than teetotallers do.
This is response to someone claiming alcohol is good for the heart and dementia. Again since @ollinger claimed it would love to see the study he is talking about because, frankly, that is BS.

Alcohol is bad for you, from a little killing your braincells to regular drinking raising the risk of the other problems. Enjoy it as much as you want but don't kid yourself you are doing yourself any favours. If you've heard opposite it's likely it would've been industry pumping out nonsense.

Most people drink at least a little and don't seem to wind up with cirrhosis, so lets' not be overdramatic here. Lowering sperm count seems a good thing to me, but here again, we've never heard of social drinkers being unable to reproduce. The only thing I'd agree on is that there's probably no clearly safe dose of alcohol that can't have at least a very slight effect on raising cancer rates, but with modest drinking the effect is extremely small
Well we agree then (y). But as far as not being able to reproduce never heard of drinkers droop? :sneaky:
 

Slowtwitcher

Hall of Fame
This is response to someone claiming alcohol is good for the heart and dementia. Again since @ollinger claimed it would love to see the study he is talking about because, frankly, that is BS.
There ya go. My signature once again wins.

 

Slowtwitcher

Hall of Fame
I've probably seen more people with this problem than anyone on this board and here are my conclusions:

1) CFS is not a single diagnosis. It's a grab bag term for a number of different issues that cause fatigue
2) Some treatable conditions need to be ruled out such as depression, MS, cervical spondylosis, hypothyroidism, hypopituitarism, cancer, connective tissue disorders, diabetes, cardiomyopathy, Obstructive sleep apnea, etc
3) most causes will be untreatable and related to neurobiological reactions to infections, mitochondrial dysfunction, or unknown causes.
4) most remedies are of dubious benefit and ensuring a healthy lifestyle including exercise to tolerance is important to maintain some stamina


Outcome is entirely variable and dependent on the mechanism and the patient's mental health. Those that sink into depression with this condition inevitably have far worse outcomes than those that maintain positive attitudes. Unfortunately negativity is hard to reverse course on as it's often personality driven.
Dart64 knows what's going on here. If you're thinking of a "solution" or that you can "help," read that post again.
 

WildVolley

Legend
weird. Sometimes I do that type of sleeping. Wake up in the middle of the night and do some things then go back to sleep. Though i feel better with 8 hours.
I often wake up around 2am and then read for about 45 minutes to an hour. I have an e-reader with colored side lighting, so I can mostly stay in the dark.

I was wondering to what extent people have studied environmental toxins with respect to CFS? When I was in my early twenties I developed a cough one winter which was killing me. The doctor didn't help. I started looking at my environment and found some black mold in a closet. I was able to eliminate it with bleach and almost instantly recovered. I don't really have any ideas about what sorts of environmental hazards or pollution might cause CFS?
 

RogueFLIP

Professional
I don't really have any ideas about what sorts of environmental hazards or pollution might cause CFS?
There are some CFS patients that can trace the start of their symptoms to environmental hazards or pollutants, sort of like the pebble that started the avalanche so to speak.
Others can trace the start of things to a trauma like a physical trauma that they just couldn't recover from. Sometimes there's an emotional traumatic event such as a death, divorce or rape. Sometimes doesn't have to be a specific event, just a cumulative process on the body/mind of one or the other or both.
Other folks with CFS will not have any idea of how this happened to them, just a slow downward slope.
 

Harry_Wild

G.O.A.T.
Spend all day in the sun, even if you are in cold climate but better to go some where “HOT” and humid. Just sit and soak it all in for a couple of days. On a yacht would be perfect. Then go and take a walk. Maybe, on a beach?
 
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Dansan

Rookie
Who diagnosed you with CFS? Sounds more like idiopathic chronic fatigue, ICF...either way it's a broad umbrella for the unknown.

I'm def curious about the lifestyle/personal life thing, the things that read between the lines. Depression, stress, anxiety, work type/schedule, alcohol history, mental health, ect. As someone in their 30s, this kind of thing creeps up on ya with all the pressure and other factors...can really knock ya back a peg or two. Happens more often than you think. Confluence of the perfect storm, just hammers ya down. My uncle died of a heart attack at 36. Good friend died of an aortic aneurysm at 39. All of em' were just broken and beat up, overworked, tired and stressed to the max. The body follows the mind. Who knows there could actually be something medical going on that is subclinical, but don't overlook the other factors. Get a therapist, even mentally healthy and strong minds seek therapy.
 

Harry_Wild

G.O.A.T.
Cooked up 5 extra jumbo size shrimps #12 in butter and salt. Steam it in a microwave steam dish. Quick white rice with microwave boil water. Food might get your energy and stamina back to normal.
 

Dartagnan64

G.O.A.T.
This is response to someone claiming alcohol is good for the heart and dementia. Again since @ollinger claimed it would love to see the study he is talking about because, frankly, that is BS.

Alcohol is bad for you, from a little killing your braincells to regular drinking raising the risk of the other problems. Enjoy it as much as you want but don't kid yourself you are doing yourself any favours. If you've heard opposite it's likely it would've been industry pumping out nonsense.
Agree that too much alcohol has negative consequences. Just like tennis. Ever hear of tennis elbow?

Alcohol is the great social lubricant and we are social people. There are some socialization benefits to modest alcohol use. But I agree there are probably no physical benefits. Unless you are Johnny Fever.
 

ChaelAZ

G.O.A.T.
I've been getting pretty ill lately, all tests come back negative and CFS is what I'm battling day to day. Given up on comp but still try to hit socially. Moved to a part time job working from home 19 hrs a week but even that is a bit much. I need to nap in the middle of each work day to get through.

Lately I've been feeling quite weak and have some injuries and pain building up and just generally feel like my life is slipping away as I seem to be getting worse.

I guess I don't know what my question is, does anyone have any direct experience? Something to give me hope at least. The prognosis for anyone who has cfs and had every other possible cause eliminated is very poor. I'm only mid 30's

How's it going? Any update?
 

Harry_Wild

G.O.A.T.
I'm still here. On a cortisone trial. Hardly sleeping, fatigue minimal though.
Looks like you are recovering since your fatigue is minimal. Sleep should get back to normal over the next 2-3 days? So what was the diagnostics on your condition and the cortisone trial working?
 
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