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Comment by jaxgeller | Hacker News Reader

If you are living with CFS i recommend giving https://cfsremission.com/ a look.

Crazy, I basically self diagnosed myself with CFS and got rid of my symptoms over time by discovering most of the recommendations on this page myself. I figured it had something to do with a funky immune system and gut bacteria, and changed my diet and took supplements and probiotics, and it's mostly gone. I even take bacopa, wild. This is really heartening to see that I was on the right track. My wife thinks I'm a hypochondriac with a bunch of placebos.

Also check out http://recoveryfromcfs.org/.

Orthomolecular approach. Nice.

Woah, I’m now wondering if CFS might be what’s been wrong with me for a while, but I’m not sure. I definitely have terrible sleep, I can barely stay awake during meetings, and I have some of the other symptoms sometimes associated with this (tender lymph nodes in neck, IBS, tinnitus.)

I’ve been in and out of the doctor for a couple years, with weird pains, and most recently a lymph node that is a little enlarged in the neck. Obviously there are some scary (but unlikely) potential explanations. But, my sleep quality degrading over the years is something that has been happening much slower, and started much earlier.

Not a huge fan of self diagnosis but maybe some of the proposed dietary changes would be worth trying, since they seem fairly innocuous. I’m sure eating more apples won't hurt.

If anyone has experience with CFS and has advice, I’m all ears. I’d kill to sleep like I did when I was 18.

The hallmark of CFS is post-exertional malaise, which is feeling terribly after exertion that is overly strenuous (for you). The onset of PEM can be a few hours, a day, or even a week or more after the exertion, so it can be very hard to pin down. The real way to tell is to cease exertions for a period and see if there is improvement in your symptoms. Contrast this with depression, where exercise will tend to improve your symptoms.

A second hallmark is unrefreshing sleep. Not necessarily that you don't sleep or don't sleep well, but that no matter how long or how well you sleep, you wake up feeling like you just ran a marathon. If you don't sleep well, see a sleep doctor. That may fix the issue.

Create a spreadsheet of possible illnesses that cause the symptoms you have, and start working through what testing needs to be done to exclude them. A number you may be able to exclude off the bat because they don't fit well or you have recent testing from a physical that would exclude them (e.g. common cancers). Then working with your doctor to get tests to exclude the rest. Have you done a sed-rate test? (Often it is low <3 for ME/CFS, but normally nobody looks at it in that direction, they only look for it being a marker of inflammation if its high.) Have you had a sleep study to rule out sleep apnea for example? Have you checked yourself for orthostatic intolerance or POTS? (Easy to do with a pulse oximeter at home before worrying about official tests.) And so on. You'll find plenty of information at me-pedia to help you along the path of a differential diagnosis.

For anyone reading this that doesn't know what a "sed-rate test" is, it's an erythrocyte sedimentation test[0]

[0] https://en.wikipedia.org/wiki/Erythrocyte_sedimentation_rate

(I'm fully recovered from CFS, although I still have occasional mild IBS).

There is certainly an overlap between CFS, IBS, lymph nodes, pain, fatigue, sleep problems and tinnitus: they can all be caused by stress. The most likely explanation ("I can barely stay awake during meetings") is probably that you need a better job.

Having said that, you do need to rule out other explanations, such as cancer. Talk to your doctor and see what he/she thinks.

Meetings were just an example; I can barely stay awake period. My job is great, and my work life balance is good.

And of course, we are watching for cancer. It’s very unlikely at my age, but I definitely can’t rule it out.

Do you have exactly the same symptoms when you take 2 weeks off work to go on holiday (say, after the first week)?

Yeah, last holiday I took I felt horrid the entire time. I actually had some fairly bad headaches and ended up getting tests done; they came back normal.

Headaches and fatigue typically happen after the stress, so if you do have a stressful job then it can take a few days or longer to recover.

Even if you like your job and you think it's great, that doesn't mean it isn't stressful. IMHO if you have meetings then your job isn't great, but maybe you're a strange person who enjoys meetings :)

Anyway, all I'm saying is to think carefully about your job and decide whether or not it is right for you.

Also worth getting a sleep study done, in case it is sleep apnea.

You say you've seen the doctor, hopefully that included seeing a sleep specialist and having a sleep study done? Sleep apnea is very common, and people can have it even if they do not snore and are not overweight (although gaining weight is a major risk factor). And in earlier stages patients may not even have apneas, they just move out of deep sleep.

Maybe you've already been checked but I just thought I'd mention it since it's a very commonly overlooked diagnosis (an estimated 80% of cases are not diagnosed), and declining sleep quality and falling asleep during the day are major symptoms of it. I have a relative that eventually got treated and it made a major difference for them.

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