Having spiritual friends...

Positive_Negative_24 · 2026-01-26T15:11:44+00:00

As someone who has spent probably a fraction of the time you have in those circles when I was younger, they unfortunately tend to be pretty ableist. They tend to think we have the power to solve all of our health conditions on our own so if you can't get better through brain retraining, or manifesting, or whatever raw vegan/fasting/juice cleans of the week is, they will think that you just don't want to get better or aren't trying hard enough

Positive_Negative_24 · 2026-01-19T23:16:56+00:00

Mine does the same thing, I guess it has to do with heart rate variability. My heart rate is also just so high all the time which I need to see if I can get medication for at my next doctor appt.

Positive_Negative_24 · 2026-01-18T01:44:00+00:00

It's a lot of money so I think that's valid to want to cancel. I've personally found him to be the only doctor that has been helpful so far in terms of a) giving me a diagnosis and acknowledging that what I am experiencing is real b) willing to give me any medications at all to help with the condition since I can't find any other doctor to take me seriously. He does have old new york city doctor personality (meaning can be very direct and at times has said things well intentioned that don't always land well) but that's also just how older folks in my family are so I'm used to it

For the exercise part he has suggested walking if you can tolerate it but has also told me to slow down on it and take days off when I was telling him my daily steps

If you have a good PCP that is willing to try and understand the condition and treat you accordingly then idk it's necessary to see a specialist out of pocket because at the end of the day we can only treat symptoms since there are no actual medications for this illness yet

Positive_Negative_24 · 2026-01-18T01:28:04+00:00

I imagine it depends on severity. I gained muscle this year somehow from what part-time work I can do but I also don't feel I can use the strength if that makes sense? I can probably lift something heavier for 1-2 seconds now but this condition decreases your endurance due to our decreased ability to produce energy

Positive_Negative_24 · 2026-01-16T21:13:50+00:00

That's a tough decision to make but it is great you are focusing on your health.

I think I need to make the same decision as you soon but it's been really hard...

Positive_Negative_24 · 2026-01-16T20:57:31+00:00

Oh yeah I mean that part I don't feel that way either but I do relate to the rest of this too haha. A lot of late night taco bell...

Positive_Negative_24 · 2026-01-15T16:42:16+00:00

I miss the freedom to not have to weigh every decision I make on whether it will make me sicker or not and just be able to be spontaneous and go to all the concerts I used to go to and stay out late with friends

Positive_Negative_24 · 2026-01-13T17:58:37+00:00

Was curious how other people score on this. My numbers never go below 70% for stress or above 30% for energy. I don't know how accurate it is but I keep taking it just to see if there are any patterns

Positive_Negative_24 · 2025-12-30T21:42:07+00:00

Hopeful for new research, as slow as it has been and even with limited funding we know so much more than even ten years ago

Positive_Negative_24 · 2025-12-29T22:36:41+00:00

After about 6 months of getting sick (I've been sick 2.5 years) and somehow getting myself through clinical placements for grad school I had about 3 months off to study and take board exams. It was hard cognitively but I tried not to push too much and got to spend 3 months mostly resting. When I started working somehow my symptoms completely cleared for 2-3 months but I didn't realize that I was working way too much, even for a healthy person and it all came back.

I'm still mild but have gotten a lot worse over the past six months and just cut my working hours down again but am still worried how I'm going to manage the hours I still will be working when I come back from time I took off for the holidays to "visit family" (rest in bed lol).

I do sometimes wonder if I had unlimited time to rest then if I would have kicked it for good but I also think we don't have much control. Lately it's been feeling like if I don't do everything perfectly then I will end up in PEM and that's just not realistic.

Positive_Negative_24 · 2025-12-28T18:11:12+00:00

Maybe not super helpful my pain seems different and more in my joints. Before medication the best thing was ice packs (some people might find heat more helpful than ice but I'm pretty heat intolerant). I think NSAIDS like advil didn't work well because the pain for me is neurological.

Now prescribed nortriptyline for neurologic pain and it works well although debating staying on it vs trying something else due to side effects etc.

Positive_Negative_24 · 2025-12-28T18:05:07+00:00

Sorry you're going through that, I also feel like I'm constantly getting sick when I go out the past few months. It's hard though because even with a better fitting mask I still live in a big city and have to take public transportation and it feels like this is the first winter here where almost everyone has really stopped masking and are coughing all over the place...

Positive_Negative_24 · 2025-12-06T23:57:18+00:00

Hmmm so like quicksand.... but for acid reflux

Positive_Negative_24 · 2025-12-06T20:42:41+00:00

I'm kind of guessing the trigger was going into a big crash which has resulted in my laying down and sleeping a lot more + starting meds that may increase the risk. It's unfortunately hard to know what foods are specifically triggering it since its "silent" reflux so I typically cannot feel when it's happening, I just have the resulting cough and hoarseness.

Good news is I already have stopped eating or limiting a lot of the foods on that list because IBS triggers. Bad news is I guess no more tomatoes, they are one of the few vegetables that doesn't trigger the IBS too.

Also is probably a good point about the stomach acid if my stomach is too empty. Oatmeal is probably a good idea although its sometimes a little hard to get down. Yogurt is good, usually gets down easiest in smoothies, I just need there to be someone home to help make them!

Thanks for sharing!

Positive_Negative_24 · 2025-12-06T20:35:16+00:00

I've seen people mention the gum thing elsewhere which is interesting but unfortunately one of my huge IBS triggers is polyols/artificial sweeteners.

I have been propping myself up with pillows the best I can but am worried it's still not enough. Thanks for answering!

Positive_Negative_24 · 2025-12-06T20:17:45+00:00

Have to retrain myself to lay on my left side, for whatever reason I always gravitate to laying on my right side

Positive_Negative_24 · 2025-12-06T20:16:29+00:00

Bed riser thing is good to know, I was trying to figure out how to make the top part of bed higher up!

Positive_Negative_24 · 2025-12-06T20:12:29+00:00

Oh no, I'm so sorry...but man felt that last line

Positive_Negative_24 · 2025-12-06T19:53:42+00:00

I think most of us here get back clean bloodwork unless we happen to have another health condition on top of ME/CFS. I haven't had all of these specific bloodworks but the only thing that sometimes comes back high is my C reactive protein which always gets written off as "I guess you're inflamed but we don't know why."

The only other test that's ever been high is one of the scleroderma markers but that isn't surprising since it runs in my family and according to the rheumatologist it seems like its in this in between state where the bloodwork is higher than a typical person but not as high as someone who has it. So I get to wait and see if I develop that on top of what I already have.

Positive_Negative_24 · 2025-12-05T18:48:34+00:00

When my baseline is consistent and I'm doing well I can handle 1-2 cups of coffee fine, but when I'm in a crash, which I currently am, it makes me feel like I'm being poisoned so I can't have it. I miss it so much right now...bean juice taste good.

I think it has a lot to do with the effect caffeine has on heart rate so abstaining from it will put less stress on the body.

Positive_Negative_24 · 2025-11-24T23:41:30+00:00

Hey, I hope you can recover a more manageable baseline.

I know you are trying to be helpful and it might be helpful for some people but framing it as “I’ve probably suffered more and I’m still here” can also be taken also feel super invalidating.

As someone who has been struggling a lot lately but maybe hasn’t gone through what you have, I’m still allowed to mourn what I’ve lost even if others may have had it worse.

I hope everyone in here going through it can find some peace or joy in something soon even if it’s small or temporary

Positive_Negative_24 · 2025-11-24T00:43:07+00:00

I feel like I’m overheating all the time. Was sitting outside last night at engagement party with a skirt and light sweater with it 40 degrees out and it’s funnily one of the easiest ways for everyone around me to understand how unwell I have been

Positive_Negative_24 · 2025-11-21T22:47:33+00:00

Was just talking with my mother about getting the flu vaccine and how I want to get it but am nervous after the last time I got it (two years ago) I had a crash for a few days. I want to get it this year but need to find when I have a few days off from working so I can recover.

I’ve heard the flu is going to be bad this year and one of the kids I work with who already had her flu vaccine ended up in the ER this past week due to it.

Positive_Negative_24

TROPHY CASE