Hacker News Reader

Comment by thrwtllwy | Hacker News Reader

Fibromyalgia and CFS have been tossed around but never officially diagnosed.

The practical experience that I have is frequent exhaustion from things that should be easy, difficulty focusing, flu-like aches and tons of migraines.

View on HN

I've lived through this myself. There is hope. I had the great fortune of being able to live with family until I could weather the storm. It turned out I needed to de-stress by life, live with accepting people, and eat delicious and healthy food over the coarse of a few years. I had destroyed by mind and body burning the candle at both ends with little to no nourishment (physically and non-physically), and the tax man came.

Every hope for your success..

Fibromyalgia, CFS, .. labels like that are used when the doctors have no clue, just give up and don't wanna look further into your issues. Then they blame it on stress and psychological issues. That's 1000 % wrong.

Most likely you have a virus or bacterial infection that hasn't been detected yet. I'm in a very similar situation like you so I'm speaking from personal experience. Ever been bitten by a tick? Do you have gut issues?

Read this, very important: https://www.hardtowrite.com/pathogens/

As for earning money: Assuming you're too unwell to consult, you can do mindless tasks on Appen. https://connect.appen.com/qrp/public/home Things like checking search results for Bing or Google, improving Apple & Google maps. Pay is between $15, $24 / hour depending on the project.

Doctors checked me out for various things and then sent me to a psychologist who declared I had “health anxiety” when I was developing adult-onset type 1 diabetes. I had been in pain for months, every day, and lost tons of weight, then turned it around with a very specific diet (coincidentally low carb) and they acted like I was just being paranoid about food. It’s maddening how some doctors, for one reason or another, disregard almost anything a patient says.

You should all (also OP) look into Fabry. It's a genetic disease which for some only shows up in adulthood. My Mum went through decades of chronic pain and though she had Fibromyalgia. There are dozens of papers showing how Fabry is often misdiagnosed as Fibro.

I had similar except the migraines, from gallstones and cervical spine misalignment. I suffered for over a decade, but never gave up hope. Once the obvious pain showed up in the gallbladder and I found a good chiropractor, my issues are almost completely gone.

All I can say is focus on fixing the problem. Do whatever you need to do to diagnose yourself, heal yourself, and focus. Going to work through the pain an fatigue was tolerable only because it kept me able to pay the chiro/surgery bills.

Self diagnosis comes through process of elimination sometimes. Try eliminating or adding different things from/to your diet for a month, one at a time.

My aunt had this exact same symptoms. In her case, after years, she was diagnosed with diabetes, which some prior exams had missed somehow. Treating for diabetes fixed her chronic pain.

It's just an anecdote, of course. I hope you get cured :)

I had increasing difficulty with fatigue for years and it turned out to be Celiac disease. Then, I got type 1 diabetes after going GF to treat Celiac, which was a slow onset which made things very difficult for 1-2 years. My situation isn’t too different than what you describe, actually, even after diagnoses and treatment.

Have you been checked out for celiac? I had all sorts of unexplained health effects but the #1 thing was feeling exhausted all the time and falling asleep after lunch every day.

Those symptoms sound very similar to the fatigue I have, but I have type 2 diabetes and the fatigue started very suddenly after a brief viral infection. I've had the usual tests for Celiac but they were negative. I have seen some signs of improvement on a very low carb diet but it hasn't been consistent and I have trouble sticking to that kind of diet due to cost coupled with the fact that, as an amputee, it's hard for me to get to grocery stores.

Have you done a sleep study to check for sleep apnea?

Reply on news.ycombinator.com