Hmm, do you mean whether they’d find an answer (or even what the answer might be)? If so, it’s tough to say.
Edit: This is a much longer response than I intended to give… My bad!
One of the issues I’ve been dealing with for example is I’m constantly incredibly tired. The feeling that most people have when they first wake up for a couple of minutes where they’re not fully awake even though they’re “physically awake” is the closest I can describe it, except I have it all day most of the time.
Doesn’t matter how much sleep I get, the result ends up pretty much being the same. I do often have sleep issues, but sometimes I think that it’s a cyclical result of me being too tired throughout the day and thus not doing enough, and so my brain doesn’t think that it’s time to sleep because I haven’t done anything (but then because I don’t sleep well, the next day I still end up doing “not enough” because I’m even more tired from the lack of sleep)… I’m not even sure if that makes sense, but when I bring it up to doctors they don’t seem to think it’s a crazy theory.
Trying to find out the root cause though has not been easy, as sadly lethargy and fatigue are very generic symptoms - the amount of things that can cause it (even on a chronic level like mine) is… quite a list. And then if you eliminate one, that doesn’t mean that others aren’t affecting you either.
So for example, it’s common for me to be low on iron and other essential vitamin levels because I have Crohn’s Disease which one of the side effects is that you have a hard time absorbing those nutrients. Nowadays I consistently see a hematologist who checks for these things, and I can have iron infusions done to fix low iron levels.
A couple of years ago, my results were so low that the lab tech called my doctor saying it was dangerously low, who then called me at 8PM in the day saying that I needed to drop what I was doing and go straight to the ER for an emergency blood transfusion. One of the jobs of iron to my understanding is to be a binder for oxygen so that it can be carried throughout your body - if it gets too low, you risk your organs basically not getting enough.
Then last year we found out my testosterone levels were practically that of an 80 year old man - I’m in my late 20s… So I had to start TRT, and everyone hoped that would be the magical fix - sadly, it wasn’t (though it still needed to be addressed anyways). That however comes with its own issues.
Now they want me to get a sleep study done because their next idea is that I might just never (or very rarely) be entering REM sleep - if you don’t enter REM sleep, then you’re pretty much not actually sleeping (an 8 hour sleep without REM is practically just an 8 hour “power nap”). But even if that were the case, and we got it fixed, there’s still no guarantees that there isn’t some other issue that is triggering the fatigue.
As to my gut feeling, I know there is certainly an answer - I just don’t know what the answer is. But there is absolutely zero chance that the majority of the humans on this planet can go about their lives and actually be awake with enough energy to do “normal things” such as work an 8 hour day, and that I’m somehow that unique to just be missing some vital gene or such, especially when I used to be among those people. I haven’t even hit my thirties yet!
Somewhere along the way, something went critically wrong and I lost that “ability”, but as to what that “something” is I unfortunately just don’t know because after all these years I’ve exhausted the list of things I think it could be based off my limited medical knowledge (I of course never went to medical school, but living with an autoimmune disease since before you even started puberty you do at least learn a little bit).
I guess the other tangential fear I have is that I’ll spend the rest of my “good years” trying to figure this out, and that eventually the doctors will just blame it on old age. Time only flows in one direction, once March 16th 2025 has come and gone, it’ll never swing by again - there’s no do-over if they just don’t find the answer in time.
That sounds horrible. I struggle with energy a lot, but not to the degree you’re describing so I can’t imagine…
I generally think we should be careful with self-medicating, and I don’t know if this is allowed on this forum so I’ll accept any consequences:
Have you tried amphetamines/stimulants? Like a very low dose, not anything to make life a party but just a hint to get yourself going, lower than anything you think of. Only early in the morning and no refills during the day, so it won’t interfere with your sleep and won’t build tolerance. And only pure shit, a thoroughly tested substance, not street-meth or other untested garbage that can be mixed with fentanyl and cocaine and a host of other substances - I mean like actual adhd-medication.
It’s not going to solve whatever underlying issue you have (unless it’s ADHD, lol), but if it makes you function and feel better it while figuring it out it could be worth it. Ideally as prescribed by a doctor to monitor your heart and health over time.
Regardless , I hope you find whatever you need to feel better and more energetic.
I appreciate that, thanks! There are two big problems that I’d have with self-medicating. Trying to actually obtain medication that is “clean” and not mixed with other bad stuff (while also trying to navigate the legal issues that could come with it - landing in prison would certainly not do well with my condition…) and then despite all of the medical knowledge that I’ve picked up from being in and out of hospitals, seeing various doctors, etc - I won’t pretend that this knowledge comes even close to understanding all of the inherent risks of said medications, and interactions that can come up from other adjacent medications I take. Hell, sometimes the doctors don’t even do a good job at screening this, and it comes down to the pharmacist warning me “Hey, we show that you’re taking X and Z, the new Y medication your doctor prescribed can conflict with this. Are you sure they’re aware you’re taking X and Z?”. It would seem that even doctors who go through the entire process of becoming a doctor can be bad at this particular (but very important) bit pharmacology - so I’m not sure what chance I’d have at being any better 😅
(Of course, I always make sure my doctors are aware of what I’m taking - the list is large, but I keep track of it very well)
So that kinda just leaves going the “proper” route of this, and unfortunately like other controlled substances, doctors (at least here in the US) get antsy if you even briefly suggest it and are quick to then label you as drug seeking. Then the next problem is trying to get a doctor who is even authorized to prescribe you that kind of medication - a lot of the practices over here have rules that prohibit their doctors from prescribing those substances even if they think its in your best judgment. AFAIK this is because of malpractice insurance, the FDA’s tight grip over it, and other factors that are just out of their control. It is something that is probably worth me trying if nothing else than to rule it out as a potential treatment vector, but as it is, I don’t really have a way to explore it sadly (in a safe manner that is).
Hmm, do you mean whether they’d find an answer (or even what the answer might be)? If so, it’s tough to say.
Edit: This is a much longer response than I intended to give… My bad!
One of the issues I’ve been dealing with for example is I’m constantly incredibly tired. The feeling that most people have when they first wake up for a couple of minutes where they’re not fully awake even though they’re “physically awake” is the closest I can describe it, except I have it all day most of the time.
Doesn’t matter how much sleep I get, the result ends up pretty much being the same. I do often have sleep issues, but sometimes I think that it’s a cyclical result of me being too tired throughout the day and thus not doing enough, and so my brain doesn’t think that it’s time to sleep because I haven’t done anything (but then because I don’t sleep well, the next day I still end up doing “not enough” because I’m even more tired from the lack of sleep)… I’m not even sure if that makes sense, but when I bring it up to doctors they don’t seem to think it’s a crazy theory.
Trying to find out the root cause though has not been easy, as sadly lethargy and fatigue are very generic symptoms - the amount of things that can cause it (even on a chronic level like mine) is… quite a list. And then if you eliminate one, that doesn’t mean that others aren’t affecting you either.
So for example, it’s common for me to be low on iron and other essential vitamin levels because I have Crohn’s Disease which one of the side effects is that you have a hard time absorbing those nutrients. Nowadays I consistently see a hematologist who checks for these things, and I can have iron infusions done to fix low iron levels.
A couple of years ago, my results were so low that the lab tech called my doctor saying it was dangerously low, who then called me at 8PM in the day saying that I needed to drop what I was doing and go straight to the ER for an emergency blood transfusion. One of the jobs of iron to my understanding is to be a binder for oxygen so that it can be carried throughout your body - if it gets too low, you risk your organs basically not getting enough.
Then last year we found out my testosterone levels were practically that of an 80 year old man - I’m in my late 20s… So I had to start TRT, and everyone hoped that would be the magical fix - sadly, it wasn’t (though it still needed to be addressed anyways). That however comes with its own issues.
Now they want me to get a sleep study done because their next idea is that I might just never (or very rarely) be entering REM sleep - if you don’t enter REM sleep, then you’re pretty much not actually sleeping (an 8 hour sleep without REM is practically just an 8 hour “power nap”). But even if that were the case, and we got it fixed, there’s still no guarantees that there isn’t some other issue that is triggering the fatigue.
As to my gut feeling, I know there is certainly an answer - I just don’t know what the answer is. But there is absolutely zero chance that the majority of the humans on this planet can go about their lives and actually be awake with enough energy to do “normal things” such as work an 8 hour day, and that I’m somehow that unique to just be missing some vital gene or such, especially when I used to be among those people. I haven’t even hit my thirties yet!
Somewhere along the way, something went critically wrong and I lost that “ability”, but as to what that “something” is I unfortunately just don’t know because after all these years I’ve exhausted the list of things I think it could be based off my limited medical knowledge (I of course never went to medical school, but living with an autoimmune disease since before you even started puberty you do at least learn a little bit).
I guess the other tangential fear I have is that I’ll spend the rest of my “good years” trying to figure this out, and that eventually the doctors will just blame it on old age. Time only flows in one direction, once March 16th 2025 has come and gone, it’ll never swing by again - there’s no do-over if they just don’t find the answer in time.
That sounds horrible. I struggle with energy a lot, but not to the degree you’re describing so I can’t imagine…
I generally think we should be careful with self-medicating, and I don’t know if this is allowed on this forum so I’ll accept any consequences:
Have you tried amphetamines/stimulants? Like a very low dose, not anything to make life a party but just a hint to get yourself going, lower than anything you think of. Only early in the morning and no refills during the day, so it won’t interfere with your sleep and won’t build tolerance. And only pure shit, a thoroughly tested substance, not street-meth or other untested garbage that can be mixed with fentanyl and cocaine and a host of other substances - I mean like actual adhd-medication.
It’s not going to solve whatever underlying issue you have (unless it’s ADHD, lol), but if it makes you function and feel better it while figuring it out it could be worth it. Ideally as prescribed by a doctor to monitor your heart and health over time.
Regardless , I hope you find whatever you need to feel better and more energetic.
I appreciate that, thanks! There are two big problems that I’d have with self-medicating. Trying to actually obtain medication that is “clean” and not mixed with other bad stuff (while also trying to navigate the legal issues that could come with it - landing in prison would certainly not do well with my condition…) and then despite all of the medical knowledge that I’ve picked up from being in and out of hospitals, seeing various doctors, etc - I won’t pretend that this knowledge comes even close to understanding all of the inherent risks of said medications, and interactions that can come up from other adjacent medications I take. Hell, sometimes the doctors don’t even do a good job at screening this, and it comes down to the pharmacist warning me “Hey, we show that you’re taking X and Z, the new Y medication your doctor prescribed can conflict with this. Are you sure they’re aware you’re taking X and Z?”. It would seem that even doctors who go through the entire process of becoming a doctor can be bad at this particular (but very important) bit pharmacology - so I’m not sure what chance I’d have at being any better 😅
(Of course, I always make sure my doctors are aware of what I’m taking - the list is large, but I keep track of it very well)
So that kinda just leaves going the “proper” route of this, and unfortunately like other controlled substances, doctors (at least here in the US) get antsy if you even briefly suggest it and are quick to then label you as drug seeking. Then the next problem is trying to get a doctor who is even authorized to prescribe you that kind of medication - a lot of the practices over here have rules that prohibit their doctors from prescribing those substances even if they think its in your best judgment. AFAIK this is because of malpractice insurance, the FDA’s tight grip over it, and other factors that are just out of their control. It is something that is probably worth me trying if nothing else than to rule it out as a potential treatment vector, but as it is, I don’t really have a way to explore it sadly (in a safe manner that is).
Mate that’s rough, it’s a lot of stress and you’ve got some horrible symptoms. No wonder you’re worried