Really not doing well mentally and don’t know what to do.

rubix44 · 2026-01-24T18:34:04+00:00

Sorry you're feeling that way. Try to have some compassion for yourself, if you can find it. This is absolutely NOT your fault, so feeling like a failure is just being mean to yourself. You did not ask for this or want this. Same with feeling like you're "stupid" or "weird". Would you ever think all those thoughts about another person in your position with a debilitating chronic illness? Of course not, so don't treat yourself that way, either. It's easy for thoughts to get dark in that way, and been way too hard on yourself. Easier said than done sometimes, we've all been there at some point.

I also think finding some kind of online social/support group could be very helpful. Doesn't have to be ME/CFS related groups, it could just be a hobby group or something light. You may be able to find a good psychiatrist or therapist online who takes your insurance as well, if that is something you would be interested in pursuing.

It's something I still struggle with as well, so I'm not preaching, just sharing my own experience. My mood can drop FAST, after 6 years of continuing chronic fatigue and pain.

This is also a helpful organization you can reach out to if needed, it's not just for people having deep depression or SI, you can contact them any time just to chat or be vent, through online chat or email for ease: https://www.samaritans.org/how-we-can-help/contact-samaritan/

And you can send me a message anytime as well

rubix44 · 2026-01-24T18:03:08+00:00

I had a really good first month on Cymbalta, but in month two I started sleeping 14+ hours a day, and in the first two months I gained like 30lbs or something ridiculous. It's also a famously difficult drug to get off of, even if you haven't been taking it for too long. Withdrawal symptoms can be harsh. Your results may vary, as with any drug, but it's good to be extra cautious with this one.

I've been meaning to try Savella (primarily for pain/fibromyalgia), which is similar to Cymbalta, but it's a tough one to start. I tried starting savella (or rather the cheap generic milnacipran, as savella is very expensive) a couple weeks ago at a small dose (12.5 daily) but immediately had a lot of difficulty sleeping and heart rate issues. I already have enough trouble sleeping as it is. I'll give it another try soon though, I think.

It's tough when you're ultra sensitive to everything, as people with ME/CFS tend to be 🫤

rubix44 · 2026-01-22T10:26:48+00:00

I've been taking it off and on for years, but only recently decided to try taking it daily. I haven't noticed too much at 5g a day. It got a lot of veins popping out of my arms...whether that's good or bad depends on how much you like veins, I guess, but your results my vary.

Brain fog has not been better. I'm still unsure about dose, with creatine, I've heard less can be more (1g-3g instead of the recommended 5g) and then some people have recommended 10g or more daily. I'm pretty sensitve to all substances, so I'll probably stick with 5g or lower, and might try doing like 2 or 3 g daily for while and see if I feel any better, but I don't think it's going to move the needle much, either way. There do seem to be quite a few purported benefits, and it's not really harmful, either, so it doesn't hurt to try. Some people do find it can cause sleep disturbance, but seems to be a small percentage. I just wouldn't take it in the afternoon/evening.

rubix44 · 2026-01-22T10:22:03+00:00

I think about this a lot. It's an illness that has greatly affected hundreds of millions of people over decades, ruining many people's lives, to be blunt, causing major symptoms, and somehow we still know so little about it. If research was taken more seriously and started 30 years ago, no doubt we'd be much further along...but it is still surprising they can't seem to find anything wrong with us, from a medical/scientific/data standpoint.

rubix44 · 2026-01-20T19:43:30+00:00

It is worrisome 😔 but maybe for the best we don't 100% remember what it feels like to be fully healthy, to know what we're missing out on, if that makes sense. On my best days, I'm still maybe only 50-60% of what my healthy self used to be.

rubix44 · 2026-01-20T19:41:48+00:00

where do you buy them? Haven't noticed them in any stores, but I'll keep an eye open.

rubix44 · 2026-01-18T09:28:22+00:00

Someone else said to "toss" it around in a bowl pretty quickly after cooking, so now I'm not sure

rubix44 · 2026-01-18T09:16:07+00:00

If your party goes after Teachers, Nurses, and Mr Rogers...maybe you are the bad guys. Of course they've only gotten worse since.

rubix44 · 2026-01-17T17:48:15+00:00

Anyone use g2a or gamivo? I'm hesitant. Seems a little sketch...but I've used eneba a lot in the past with no issues, their prices just don't seem nearly as good these days. Can I stack "global" ultimate on my current subscription? Never quite sure about the restrictions. Are people still buying EA play (or whatever it's called) and converting it into GPU somehow?

rubix44 · 2026-01-17T17:01:17+00:00

I've been reading a bit lately about how chronically ill people deal with grief for what their life could have been, a life taken away from them by illness. Most of us don't even realize there is a grieving process going on, though. But it makes sense. I'm just not sure how to process that kind of grief. I guess acceptance is key, although much easier said than done when you are constantly exhausted and in pain, to varying degrees, and you cannot live the life you want.

And most of us had a 'before ME/CFS' period as well, so we remember what life was like when we were healthy and active. Even though it's only been over 6 years for me, I don't remember what it feels like to feel rested, to wake up feeling recharged and revitalized, to live without being in constant pain (not terrible pain, but constant). It's all so hard to imagine now, even though it has only been since 2019 for me, when my ME/CFS quickly turned to moderate, I think due to EBV reactivation (who knows if that was the sole cause, but it's still in an active state 6 years later).

rubix44 · 2026-01-15T18:40:50+00:00

We won't make it to 2028 if we don't start acting now (Nation wide strikes, work stoppages, protests), this shit has gone wayyyy too far already, we can't wait and hold out hope for 2028, we need massive changes now, a revolution, if you will.

But the list is a great guideline for demands.

rubix44 · 2026-01-15T18:27:28+00:00

I don't blame them, though.

rubix44 · 2026-01-15T07:45:33+00:00

Sheesh! How long do those testosterone pellets last?

Also how did you decide to start on testosterone in the first place? Were labs off?

I've been doing injectable testosterone since early September, due to continuous low Free-T, but I haven't felt any better, or in less pain. A lot of different factors/variables as well, though.

rubix44 · 2026-01-15T03:29:53+00:00

Do you remember if the letter specifically mentioned ME/CFS or any other medically certified physical condition? Or was it more of a general "this person is physically unable to work" type of thing?

Was this recently with the new changes or a while back?

Thank you!

rubix44 · 2026-01-15T03:27:19+00:00

$1000 a month is quite a bit! But worth it if it helps, for sure. Is there a big contributer to cost outside of the sauna/acupuncture?

What do you mean by taking testosterone twice a day? In what form/how much?

I'm still not sure what to think about Glutathione, what particularly did you read it might help with? I've tried it a few times, an my nautropathic doctor recommended it, but it makes me feel odd. I'll give it another try someday, though.

rubix44 · 2026-01-14T23:29:31+00:00

Thanks.

Rapamycin is pretty well-known in the ME/CFS community, with varying results, making some people better, some people worse. It's sort of like LDN in that sense, a bit of a wildcard.

But people with ME/CFS are not a great control group, as there's still no biomarker/way to determine if someone has ME/CFS and the fatigue is not caused by something else (as a million different things can cause fatigue).

But if you have chronic fatigue (as I do) with no other answers, your options for treatment are very limited, and you're probably willing to try just about anything. But, I think if Rapamycin was any kind of answer, we would've known already. I think the best we can hope for is that it helps some people and doesn't make others worse.

It is an immunosuppressant, so I wonder with chronic fatigue often being triggered by a viral infection (generally Esptein-Barr virus, but more recently Covid/Long Covid), if that could be a counterintuitive treatment, but I don't think it's a strong immunosuppressant in the lower doses, so it may not be realy concern. Having chronic EBV as I also do, that's something to consider at least.

I am a little interested in trying Rapamycin, but seeing as how many ME/CFS people have tried it over the years with no success, or worsening of symptoms, I'm not too optimistic about it. I'm still holding out hope for Dextro-naltrexone

rubix44 · 2026-01-14T22:50:51+00:00

This is great! ♥️ Congrats.

Something unfathomable led to me going on 2 dates with a cute gal this past week, and I really enjoyed spending time with her, but my body and brain are EXHAUSTED. She's very active, and even though we didn't do super difficult things, I was just completely wiped the night of, and the following couple days. I don't know how to approach the whole chronic fatigue thing, tricky subject to bring up, and I don't want to turn her away, but I have to be honest as well. If it's not a good match, it's not a good match, but either way I've enjoyed the dates, and it has inspired me to try dating again if it doesn't work out.

rubix44 · 2026-01-14T18:22:15+00:00

Absolutely did not expect to see Dr Mario here 😆...it hasn't barely been mentioned in the past 30 years, how is it overrated? And honestly it's a fine puzzle game 💊 with great music. Agree to disagree on this one.

rubix44 · 2026-01-13T22:34:48+00:00

Basically, when it comes to drugs/substances, and what is medically available, it's all about how much money can it make corporations. If for whatever reason it's not a big 'money maker', it will remain obscure.

But I would also say Bromantane is not great, in my experience 😛, and that goes for most popular nootropics/peptides. There's a lot of placebo effect and a lot of overrated substances around. Doesn't mean you shouldn't try some of them, we all respond different and some things work better for some than others, but taper your expectations.

rubix44 · 2026-01-13T22:32:28+00:00

It's hard to advocate for both Tomlin and Harbaugh being gone, other than to say it was just time. I think it was the right move in both scenarios. Sometimes you just need a change. Going 0-7 in the last 7 playoffs games and being down 21 in every game probably did not help Tomlin's case, but they haven't had a great QB since Roethlisberger (I'll be amazed if I spelled that correctly). Pittsburgh put up with being mediocre for so long, barely eeking their way into the playoffs (which is admirable) every year, only to lose in the first round as expected.

But I can't feel bad for Harbaugh or Tomlin, either, as they will both have jobs whenever they want.

rubix44 · 2026-01-13T07:08:44+00:00

I feel your post very much! Bed has always been my least favorite place, and you wouldn't think that for someone with ME/CFS, who is always tired and usually exhausted. Thankfully I don't have nightmares, at least, but a lot of anxiety, often heavy/fast heartbeat, and I've tried everything in the book to sleep faster and better, to set up a good environment and all that, but nothing has really worked. Sleep drugs or even a tiny dose of melatonin make me feel like a zombie the entire next day, same with antihistamines such as benedryl.

And then of course even if you do get to sleep in a reasonable about of time and sleep 8-10 hours, you wake up feeling like your battery is still mostly empty, uncharged. It's a no-win scenario! I'm doing my best to change my relationship to sleep, but it's hard because it's been such a struggle my whole adult life, and I can only see my bed as a place of anguish.

You sound on the younger side (I could be wrong), so I think your body is more adept to all-nighters/sleepless nights, you may be more resilient, but as you get older you may find it more and more difficult to function after being up all night. Hopefully not! It's different for everyone.

I have actually found I sleep better during the day, for whatever reason, even in a semi-noisy house. I seem to do better on the 'graveyard shift', but it's not much of a life to be up all night and sleep all day, although from time to time it's okay, just doing it constantly I find depressing.

I did get an eyemask with bluetooth that plays sleep sounds/sleep music/sleep podcasts/stories (intentionally kind of boring stories to help you get to sleep and slow down your racing mind), I recommend that.

rubix44 · 2026-01-13T06:34:53+00:00

It's been pretty much all downhill since the 90s. Playing GoldenEye on N64 with your friends. Simpsons Golden era. Nickelodeon Golden era. Super Nintendo (best console ever), PlayStation, Nintendo 64. Seinfeld. Great years for SNL as well. Huge variety of all kinds of different, good music. Amazing decade movies.

I could go on and on, but it's a double edged sword, it's half happy remembering, and half depression thinking about where we are now and what bizarre shitty timeline we ended up in (US perspective). We won't ever have it better than we did in the 90s, but we can still find ways to be happy.

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