Disabling fatigue--have you ever been this down?

I am having the same problems and feel chronically fatigued. I just got diagnosed with sleep apnea but don't have a CPAP yet. What helps me through my day is 1000 mcg vitamin c and 2000 mcg vitamin b12 taken 4 times per day. Makes me feel like a human. For the headaches with eye pain I take sumatriptan with 2 aleve as needed.

Good luck!

bast wrote:"rain on my parade" ?
i wasn't having a parade, Julie.

Bast: Maybe you should add to your somewhat exhaustive list of symptoms something like 'Hypersensitivity to everyday run-of-the-mill cliches'. Hope you feel better soon.

Sir NoddinOff wrote:

bast wrote:"rain on my parade" ?
i wasn't having a parade, Julie.

Bast: Maybe you should add to your somewhat exhaustive list of symptoms something like 'Hypersensitivity to everyday run-of-the-mill cliches'. Hope you feel better soon.

SNO,

As an FYI, there is a group of people who are literal minded and don't understand typical expressions. It has nothing to do with being hypersensitive as due to brain wiring, they truly don't understand what they mean. As a result, they interpret them in a literal fashion.

I am not saying this is true of Bast since I don't know him/her but I wanted to throw that out there.

Kudos to Julie for the way she responded to Bast on this issue.

49er

49er

Hi Folks,

Thanks for all the responses in general. I will try to get back to some of your specific posts in time.

Regarding the CFS possibility brought up by "bast." Thanks for being concerned. I will describe some of my long-term history, which should dispel the possibility that I have CFS or Fibromyalgia.

One day in 1993 after an organic chem. lecture, I rather suddenly felt a bit sick and lightheaded. I figured I was just hungry since I get hypoglycemic suddenly 2-3 hrs. after a meal. But this time was different. After eating, I was puzzled to find that I didn't feel any better. Unfortunately, I also suddenly couldn't focus well on my studies since I was now oddly fatigued. From that day forward I would have "non-restorative sleep." It is peculiar in that it hit so suddenly. But it's possible that it was really more gradual, but just hit a threshold of perception at that point.

I began to see doctors and getting tests. Yes, if you are thinking of it, then I was probably tested for it.

Coming up with nothing, the Drs. began to consider "alternative" hypotheses. One was CFS or Fibromyaligia. Because, at the time I was also having a lot of varied pains, though I now know they were mainly due to neck and back problems and have mostly cleared up. To make this part of the long story shorter the conclusion was that I did not have CFS. The reason was the following which directly contradicts much of the symptomology of CFS:

In 1994 I took up ice figure skating. I found that the combination of cold (I HATE exercising in heat) and the hard-core aerobic workout consistently lifted me out of my fatigue--for at least a few hours. I felt terrific after exercising, and so began to skate up to 5 days a week, and at some times 2 times per day, varying 10-15 hours/week for about 5 years. And I didn't putz around either--I skated hard and fast, usually pushing 100% for 2 solid hours, while the kids in the sport spent half their time taking breaks at the boards. I even combined skating with weight lifting at the college gym. As you might imagine, I became very physically fit during those years.

Skating was a true lifesaver, and powered me through my B.S. degree. In the final semester in 1998 I burned out though, and so I canceled plans to go to grad school after accomplishing the unique result "summa cum laude," GPA of 3.96, and then completely bombing the GRE.

In 1994 I had a sleep study. The result was zero apneas, and some PLMD. The overall impression of the Drs. was that it was "unremarkable." They tested me on some carbidopa to see if I'd sleep better, but that didn't help.

So I gave up on the Drs. for nearly 10 years. During that time I thought that a solid diagnosis for my problem was just not determinable. Or perhaps I had a destructively symbiotic combination of several smaller ailments, such as the hypoglycemia, untreatable PLMD, and perhaps damage done from unmentionable self-abuse during high school.

Over the years I've spent countless hours reviewing current developments on a range of medical problems including CFS, to repeatedly review the diagnostic criteria in order to be certain that it didn't apply. Always the conclusion is "no" for CFS. At the same time, out of desperation, I have tried many of the supplement-based experimental remedies for CFS, hoping that even if I don't have it proper, I might just get an energy boost from something used to treat it. But nothing ever worked, except exercise.

So I continued to manage my fatigue through exercise, which still provided a temporary boost up until a few years ago. Then finally in 2010-2011 exercise--my trusty supporter for nearly 16 years--started to become ineffective. And I became increasingly worried that I was doomed.

Fortunately, since my PCP didn't consider this, a work Dr. advised me to get a another sleep study. So now I am diagnosed with OSA, prescribed a APAP machine, and within a few days (barring DME shenanigans) from beginning treatment.

I hated the idea of possibly having OSA and needing CPAP for many years. I was convinced the first PSG couldn't have changed, so there was no point getting another. Perhaps I subconsciously also feared that it would turn up that I DID have OSA if I got another PSG. As with many things in life, only the recent rapidly steepening trajectory of my condition into utter incapacitation cured me of my denial, bargaining, and any reservations about CPAP--all within the past couple days! I am now eager to get on CPAP.

I just want to begin recovering. I don't care what it takes. I'll do anything. I think I'll even like my CPAP machine.

49er wrote:

Sir NoddinOff wrote:

bast wrote:"rain on my parade" ?
i wasn't having a parade, Julie.

Bast: Maybe you should add to your somewhat exhaustive list of symptoms something like 'Hypersensitivity to everyday run-of-the-mill cliches'. Hope you feel better soon.

SNO, As an FYI, there is a group of people who are literal minded and don't understand typical expressions. It has nothing to do with being hypersensitive as due to brain wiring, they truly don't understand what they mean. As a result, they interpret them in a literal fashion.
I am not saying this is true of Bast since I don't know him/her but I wanted to throw that out there.
Kudos to Julie for the way she responded to Bast on this issue.
49er

49er: I know you probably didn't mean to insult Bast, but I think you just did. In spite of your awkward caveat, I think you're implying that Bast is not brain wired enough to understand the simple phrase "Rain on your parade"? I think Bast was probably just little overtired and maybe a little snappish (plus didn't sense instant approval of 'the list'). Whatever the reason, I think Bast is more than intelligent enough to know the implied message of the post, including all its nuances. (Indeed, in a later post, it was said that the phrase and it's implications were understood.) Please guide me to the peer reviewed data about this supposed group of Americans who, given reasonable intelligence and social development, can't understand a basic and simple everyday cliche. Stand and deliver (oh, that's kinda of a tough one, sorry).

Funny; I met a lady a couple weeks ago, who was recently diagnosed with MS.
It seems her chronic fatigue was years ago attributed to 'stress',
and she was instructed to exercise to reduce the symptoms--it worked, but more recently,
she was forced to forgo exercise because of an injury; and the fatigue returned.
Now she is being treated for the MS, but exercise has a significant positive effect on all her symptoms.
Some doctors can have tunnel vision; and sometimes need a nudge to consider other causes.
Whatever the outcome, good luck with your continuing struggle.

Bast - this is ridiculous - "your response makes me angry, actually. you seem so smug in your assertion that doctors know so much more than we possibly could, and that we need to give our power to them in terms of understanding what's going on. most of us know our bodies much better than any doctor ever could." I never said we need to 'give them our power' in any sense, just to be cognizant that they have the background and we don't, much as we like to think we do.

Joannie - You make very good points.

I was not trying to be a know-it-all, but have seen some of the disasters that followed from patients trying to dx themselves via the internet, and when someone feels as terrible as the OP did, likely to grab onto the first thing that sounds possible, they could well be headed for trouble, maybe badgering their doctors (who certainly don't know it all but don't necessarily pretend to) to prescribe this or that for a condition they don't have, and end up worse than before, I throw in my 2 cents. Sue me.

To the OP - I do hope you find answers and feel better soon.

If there is anything that I may add, it is that one of the purposes of this forum is to EXCHANGE INFORMATION. We share what we have learned and what has worked for us. It is up to the readers of these posts to decide individually what to believe, what to consider, or what to do. What we don't need here are people to filter or redirect the discussion because they do not share the same ideas or approaches to treatment. It is pure arrogance to do so. I'm very sensitive to people telling me or others what we should or should not be told. We're mostly thinking adults here, so don't treat us as if we are children or village idiots. No one appreciates a control freak.

IMHO, there wasn't a thing wrong with the information that Bast shared. It is good information that addresses AHI15's questions. I've have personally wrestled with chronic fatigue for the past several years, so I appreciate the information. Chronic fatigue has been a much longer journey for me than OSA. OSA has only be one leg of that journey. Diabetes, heart disease, hypothyroidism, and medications have also played roles. My approach to dealing with chronic fatigue has been to tackle one potential cause at a time. That method works for me because I am able to cross off potential causes from my list. If I still have chronic fatigue after I have my OSA under control to my satisfaction, then I will seek addressing other potential causes. I still plan on remaining on CPAP because it is beneficial to my health, just as I plan to remain on insulin and Synthroid because they also benefit my health. However, I will ask questions along the way just as AHI15 has done, and I hope there will be helpful people like Bast who will be there to share their honest opinions or experiences.

Julie wrote: I was not trying to be a know-it-all, but have seen some of the disasters that followed from patients trying to dx themselves via the internet, and when someone feels as terrible as the OP did, likely to grab onto the first thing that sounds possible, they could well be headed for trouble, maybe badgering their doctors (who certainly don't know it all but don't necessarily pretend to) to prescribe this or that for a condition they don't have, and end up worse than before, I throw in my 2 cents. Sue me.

Julie: I know we've been on opposite sides of the fence before... but on this thread I'm totally shoulder to shoulder with you. Well said about the dangers of using the internet as the your main or sole diagnostic tool. I really worry about the folks who abuse that knowledge base. Way to go, girl

My apologies to the OP for temporarily hijacking this thread but I hope you will understand.

SNO, why the snippy response? I did nothing to warrant that.

If you really care to find out more information, you can do a google search. But yes, there are people who have average to above average intelligence who have trouble with understanding so called simple phrases.

And no, I didn't insult Bast as I qualified what I said. I was stupid to think you might care to learn something but live and learn.

49er

Sir NoddinOff wrote:

49er wrote:

Sir NoddinOff wrote:

bast wrote:"rain on my parade" ?
i wasn't having a parade, Julie.

Bast: Maybe you should add to your somewhat exhaustive list of symptoms something like 'Hypersensitivity to everyday run-of-the-mill cliches'. Hope you feel better soon.

SNO, As an FYI, there is a group of people who are literal minded and don't understand typical expressions. It has nothing to do with being hypersensitive as due to brain wiring, they truly don't understand what they mean. As a result, they interpret them in a literal fashion.
I am not saying this is true of Bast since I don't know him/her but I wanted to throw that out there.
Kudos to Julie for the way she responded to Bast on this issue.
49er

49er: I know you probably didn't mean to insult Bast, but I think you just did. In spite of your awkward caveat, I think you're implying that Bast is not brain wired enough to understand the simple phrase "Rain on your parade"? I think Bast was probably just little overtired and maybe a little snappish (plus didn't sense instant approval of 'the list'). Whatever the reason, I think Bast is more than intelligent enough to know the implied message of the post, including all its nuances. (Indeed, in a later post, it was said that the phrase and it's implications were understood.) Please guide me to the peer reviewed data about this supposed group of Americans who, given reasonable intelligence and social development, can't understand a basic and simple everyday cliche. Stand and deliver (oh, that's kinda of a tough one, sorry).

49er wrote:My apologies to the OP for temporarily hijacking this thread but I hope you will understand.
SNO, why the snippy response? I did nothing to warrant that.
If you really care to find out more information, you can do a google search. But yes, there are people who have average to above average intelligence who have trouble with understanding so called simple phrases.
And no, I didn't insult Bast as I qualified what I said. I was stupid to think you might care to learn something but live and learn.
49er

Sadly, my Google search found nothing. Repeat. Please identify the peer review study you are referring to. I'm not being snippy, just academically curious since I've worked at several of the finest medical teaching colleges in the world and have never heard of this 'cliche deprived' group of Americans to which you refer. Accountability, in the end, accounts for all. (forgot who said that, Disraeli ?)

People:
Are we trying to help the OP, or engaging in a pissing contest?
Excessive fatigue leaves one quite unprepared to wade through all this sniping.
Please consider why we are here.

chunkyfrog wrote:People:
Are we trying to help the OP, or engaging in a pissing contest?
Excessive fatigue leaves one quite unprepared to wade through all this sniping.
Please consider why we are here.

I apologize to all the site members - I overreached in my attempt to provide a 'teachable moment' about accuracy and accountability regarding what you write on this site. Now, back to the problem of sleepy daytime folks.

chunkyfrog wrote:People:
Are we trying to help the OP, or engaging in a pissing contest?
Excessive fatigue leaves one quite unprepared to wade through all this sniping.
Please consider why we are here.

Well put. Seriously, I was perfectly happy with the info. bast provided. It would have been most helpful to simply add a supplemental point such as from person X: "BTW, don't get overwhelmed by concerns of a second possible ailment such as CFS right now, as you DO have OSA, so get on the road to treatment first, then when you are feeling better, consider if there are additional problems..." That might have spared a lot of bandwidth.

Granted there is some validity to being concerned that one in an impaired state of mind may have trouble with a new pile of information. But that is my problem. It doesn't mean that one is doing something reprehensible by suggesting I consider other issues.

Actually, I HAVE made the mistake once of self-diagnosing myself. I assumed that I didn't need another sleep study because the first one couldn't have changed. It took a second Dr. to get me out of that rut, which my PCP wasn't about to do. Partly that may also be my fault since I presented mainly with insomnia. I think my logical argumentative style, proposing hypothesis, etc., may have helped bias the Dr. away from considering another PSG.

Then again, I could also say that a core competency of a Dr. must be to NOT let the patient's self-diagnostic theories interfere with the systematic pursuit of a diagnosis. So I still think my PCP blew it.

On another note, I studied ADHD symptoms for several years, was positively diagnosed, and concur with the diag. This is a tricky one since ADHD symptoms heavily overlap with sleep deprivation. Except for one thing, the fact that the ADHD symptoms must have been present in one form or another since age 7. When I look back at the whole sordid affair of my childhood, it's really sad that a fairly obvious case of ADHD was overlooked.

I have also suspected depression over the years. After all, it leads to insomnia, which leads to fatigue, which leads to depression. There is only one problem. I am not depressed. I just don't fit the criteria well enough to concur with a diag. It matters what is the cause vs. effect. In my case, depression when it occurs is caused by fatigue not the other way around. However, I could easily find that probably 50% or more of psych. Drs. would happily give me an incorrect diagnosis of depression depending on how I presented which symptoms first (it's even happened in the past). Then they'd try to give me those awful antidepressants which I have quite a distrust about. But that would be a tragic error. Ultimately:

No matter how hideous my condition, I am still responsible for my recovery and making the FINAL decisions about whether any Drs.' advice or diagnosis is valid, and whether the treatment proposed is warranted and offers an acceptable risk/reward tradeoff vs. other available options (including doing nothing). The best way to be one's own best friend in this internet age is to use it to get educated and go over the facts yourself until you either agree or disagree with the Drs.

My fatigue is presently nearly incapacitating, but not totally so. It mainly slows me down to a crawl. The funny thing is, the internet is actually the most stimulating thing in my life right now! It's truly a godsend, as I'd probably lounge on the bed all day without it.

For someone who is totally incapacitated, I hope that in this internet era, that family members would investigate every possible angle of their interactions with Drs. Basically I don't trust Drs. I don't trust experts. Our culture pressures people into believing that they must always defer to authorities to decide what is best for them and for society. But sometimes I need experts. It's an imperfect world.

I hope I get my frackin' machine soon!

My prayers are with you tonight. Interrupted sleep breathing can be a debilitating thing. Its also scary.

Feel free to PM if you ever need a friend to bounce things off. Im a fellow student--learning from all the really smart people on here.

And yes, ive been as low as you. I wont describe all my symptoms, but i also have another immune disease besides apnea. I have to monitor everything and its a time consuming pain in the butt for someone who used to be a non-stop on the go athlete.

A few things that might help:
1. get oximetry data and correlate. Look at your data every morning with sleepyhead or encore. Try to correlate sleep events to certain problems such as leakage, backsleeping, eating habits, weight, etc.

2. considering getting an oxygen concentrator. I use one when i feel bad for about 30 min. I bought it on craigs list although i do have a scrip. It can also connect into your cpap!!!

3. Make sure you dont have another condition such as adrenal fatigue or POTS. Get a cardiac workup if you havnt. Get blood work and thyroid information. They both can cause debilitating exhaustion.

4. Anxiety meds might help. See Dr. Cheneys work on fibromyalgia and the drug combo of klonopin, doxepine, and magnesium and see if it fits you. Or something that works for you if you need it. Serotonin depletion is very important.