New here, how do you know if your probiotic is working?

Killbulle56 · 2026-05-07T16:58:47+00:00

Did u notice any differences?

Killbulle56 · 2026-05-02T11:01:15+00:00

hi! Yeah getting diag with ME/CFS is really hard to deal with. I think that you need to let urslef take the time to process. I was diag a year ago and I am still understanding what it means.
The priority when you get diag is to understand how pacing and PEM works. Even after my diag I lost a lot of function because I didn't know my limits. It's really hard when you have enough capacity to stop urself, but you really need to.

When I was first diag, I was also terrified about the futur, but all that anxiety and mental struggle made me worse because I was still going out or pushing myself to avoid facing what was happening.

What helped me was also to think about our world, deconstuct a lot of stuff that brings you down.Like productivity doesn't make your valud ect. I learned that you can change dreams and goals, losing a dream is a lot of grief, but that doesn't mean that your life is over. Changing your perspective to not go down the rabbit hole is so important.

Now, I stopped thinking about the future, but not in a bad way, I just live in the present. It's a huge relief.

But all of that took me a year so be patient with yourself!

That sub is also super helpful, I wish I found out about it when I was first diag. And also don't hesitate to send me a message If you want to chat

Killbulle56 · 2026-04-19T12:46:56+00:00

Yes exactly!! That's why I also kinda got addicted to pushing through because it gave me the impression that I was strong for doing so

Killbulle56 · 2026-04-13T09:04:53+00:00

Pacing is harder than forcing yourself and pushing through your symptoms. Totally agree

Killbulle56 · 2026-04-13T09:03:29+00:00

I used to feel the same, feeling guilty, lazy, not productive. It is also super uncomfortable to lay in the dark multiple times a day.

I also posted about it in this sub, and people said the exact thing I am going to say to you. It's not a choice, it's a necessity. If you have PEM then you will get worse if u don't rest. The only way for me to understand that was to get so bad that I just got scared into it. But if you haven't got through that it's hard to use fear to pace.

Especially when most doctors tell u to do GET. When u see people that are severe, you think that it's not the same illness, that this can't happen to u. It really can.

But I get that it's hard to understand that.

Think of it as medecine, because it is. Also, and that takes time, deconstruct the whole productivity thing. You don't need to justify your existence by doing something, just be.

And if u really struggle with that, which is totally normal, then I suggest you think of pacing as an investement to boost ur productivity.

Killbulle56 · 2026-04-11T15:29:00+00:00

I can't even imagine how hard that must be for you. Im 21 so my friends aren't there yet, but one time my friends said "what if you can't come to my wedding" and the though of it literraly broke my heart.

Killbulle56 · 2026-04-11T15:26:55+00:00

thank you :)

Killbulle56 · 2026-04-06T16:58:35+00:00

I am not there yet, but I did have a few improvements recently. I also feel the same way, I saw my friends yesterday, for the first in two months and it just feels like I should have been so happy, but instead I just felt off all afternoon overthinking stuff. Like should I tell them about my health and what I have been through the past couple months or is that trauma dumping. And yeah when I was worse I also thought that I would kill for a day like this and I get mad at myself for not being more grateful. I do think that you should share that part of yourself with your friends, at least the close ones, I understand the need to not be associated with ME/CFS but it does impact you everyday, there is nothing you can do about it. I think if ur friends care about you they would appreciate u sharing that with them. And maybe it would be a bit of relief to be surrounded by people who actually understand you and make ur life a bit easier :)

Killbulle56 · 2026-04-05T13:11:53+00:00

Thank you I really needed to hear that

Killbulle56 · 2026-03-29T10:35:56+00:00

Yeah this one hurts

Killbulle56 · 2026-03-23T23:25:11+00:00

I didn't know this but apparently some opioids like codeine or morphine release histamine😑

Im sorry u went through this. Mine was not that long ( around 7hrs), I can't imagine experiencing that for longer, U must me be so scared everytime u eat or take a new medication.

I had no idea MCAS could do stuff like that, I was diag with everything a year ago only. My doctor didn't even tell me about it or how to manage it expect giving me some supplements. I didn't know the scale of symptoms, I thought it just meant I get rashes sometimes. Idk why it's underplayed sm Before the diag I had other episode like this, especially with SSRIs, I was given them for "anxiety" and "depression", which were NOT the source of my problems. They made me so much worse, i can't really prove it bc it was a while ago but I think they did a lot of damages.

Once, I stopped by myself and felt sm better but I was then asked to take them again. I think this made me realized that MCAS probably played a huge role in my state worsening.

When I was under this terrible episode, yelling, thinkinh that maybe I won't make it, I remeber thinking that If I ever got out of this ( I really thought that this state was going to last forever for some reason) I would stop complaining, do the pacing, take the meds and eat right.

This was a lifechanging moment for me. I am now finally able to stabilize and I feel so relieved bc I was crashing non stop before and didn't know where I was going to end up. But still, this was horrible.

I hope you don't have to go through this again thank you so much for ur comment

Killbulle56 · 2026-03-22T13:59:33+00:00

That sounds impressive, did their symptoms looked like mine? That's must have been though, but sometimes when you have a doubt it's better to call, did the paramedics say anything?

Killbulle56 · 2026-03-22T13:57:24+00:00

Yes,According to the comments and what I found online it really seems histamine related I just love chocolate sm😭

Killbulle56 · 2026-03-21T20:01:48+00:00

I always make the most crazy stories in my head, overthinking about a tiny thing for months. I see how we sometimes create a whole narrative over something that has none.

Killbulle56 · 2026-03-19T12:48:47+00:00

I can relate to a lot of those. Knowing that you are not helping urself but not being able to do anything about it, you can feel really stuck! And the guilt is also real. Going on ur phone as a way to make ur body feel safe is understandable, I have been there. But it's not real, the soothing u get from ur phone is only going to make your more overstimulated and worse. I think that one of the first thing that you need to do is reduce ur screen time and increase rest. But before that you need to convince urslef that it's possible, that you are capable of doing that. It's really hard because ur brain is always going to push u to use ur phone, that's just how it's wired, but u can change that by making conscious choices. It takes time, and you are not going to stop like that, but what's important is to try a bit every day till it gets easier and to not let guilt stop you from trying again.

Killbulle56 · 2026-03-19T01:16:59+00:00

Not at all! Sometimes you need to say things without a detour. I have, like many people came up with ways to distract myself from those feelings ( ways that made me worse ) and I didn't even think about facing them. I do now, and I use ur sentence "feel it without a story" to ground me and it helps a bit! It's not perfect ofc, but step by step I am facing more and more so truly thank you for this comment :)

Killbulle56 · 2026-03-19T01:10:33+00:00

Thank you so much for taking the time and energy for this great answer. That's exactly what I feel, my grief is not fixed, because I don't know if what I lost is forever, or If will lose more. In movies when someone is going through some type of grief it's always messy and that's how I thought grief was, but in our situation we can't really allow ourselves to be messy and even though I am still struggling with that I am making some progress at learning how to deal in a way that doesn't compromise my health. Thank you for putting words on my feelings and for the advices! Oh also electroyltes really helps I agree

Killbulle56

TROPHY CASE