u/potsbunnyuk

I have very severe ME/CFS. Every doctor’s appointment leaves me in PEM and crying. The stress, the travel, the fighting to be heard – it pushes me over the edge every single time.

“Your tests are normal.” Yeah, no shit. Meanwhile I’m bedbound and nobody believes me.

It’s not just the illness. It’s the medical gaslighting. It’s family saying “but you look fine.” It’s friends disappearing when you cancel for the 10th time. I cry after all visits…

I’m angry. I’m exhausted. And I’m tired of pretending I’m okay to make other people comfortable.

Does anyone else deal with this after medical appointments?

I have ME/CFS, and every single time I try to explain it, people act like I’m exaggerating. Doctors included. “Your tests are normal” – yeah, no shit, my fatigue doesn’t show up on bloodwork. But I know my body. I know when something is wrong.
The worst part is the realization. One day you just sit there and go: “Oh. I’m actually this sick. And nobody gets it. Nobody ever will.”

And the worst part? Every time I come back from a doctor’s appointment I end up with PEM. The stress, the travel, the fighting to be heard – it pushes me over the edge. And then I’m left alone with that feeling of being completely misunderstood, like I’m on the edge and nobody sees it.
It’s not just the illness. It’s the medical gaslighting. It’s the family who says “but you look fine.” It’s the friends who disappear when you cancel plans for the 10th time.

I’m angry. I’m exhausted. And I’m tired of pretending I’m okay just to make other people comfortable.
Thanks for posting this. At least here I don’t have to explain that feeling of being completely shattered and invisible. You get it. It was like that, literally after the visit I had a crying attack…

I ate 2/3 of a small bowl. And that was enough to make me nauseous at 5/10 and feel like I have the flu for the rest of the day.

Why? Because for several months now I've been battling suspected gastroparesis. My stomach can empty, but the food is stuck. Literally stuck. I'm full and nauseous.

And on top of that, I have PEM. And eating a meal is a marathon for me, where I use limited energy just for eating. So I'm exhausted before I even have a chance to digest it.

And no, it's not constipation. I don't have a problem with bowel movements. The problem is in my stomach. The food isn't moving, so I feel nauseous and cold.

The worst part is that from the outside I look normal. So people say, "But you ate, what's wrong with you?"

That's it. I ate it. And now I'm lying under a blanket because my body has used up all its energy for the day.

If you know someone with a chronic illness, don't ask, "Have you had a bowel movement?" Ask, "How are you feeling?" Because for us, two sips of soup and keeping it down is a marathon.

I've completed a marathon today. I'm going to rest.

What about you? What's it like for you? Share your thoughts in the comments – what constitutes a "marathon" for you on a typical day?

#MECFS #Gastroparesis #PEM #Spoonie

I ate 2/3 of a small bowl. And that was enough to make me nauseous at 5/10 and feel like I have the flu for the rest of the day.
Why? Because for several months now I've been battling suspected gastroparesis. My stomach can empty, but the food sits there. Literally sits there. I feel full, full, and nauseous.
And on top of that, I have PEM. And eating a meal is a marathon for me, where I use limited energy just to eat. So I'm exhausted before I even have a chance to digest it.
And no, it's not constipation. I don't have a problem with bowel movements. The problem is in my stomach. The food doesn't move any further, so I feel nauseous, queasy, and cold.
The worst part is that from the outside, I look normal. So people say, "But you ate, what's wrong with you?"
That's it. I ate. And now I'm lying under a blanket, because my body has used up all the energy for the day.

My marathon is done. I'm going to rest.

What about you? What's it like for you? Share in the comments – what constitutes a "marathon" for you on a typical day?

#MEcfs #Gastroparesis #PEM #ChronicIllness

I’m struggling a lot with eating lately. Right now even small amounts of soup seem to make my stomach worse, and I’m scared to try anything else.
I don’t have a diagnosis yet, so I’m just trying to figure out how to get through the day without making it worse.
If you’ve been in a similar spot, what helped you get even a little bit of food down on bad days? Any tips for nausea and no appetite would mean a lot.
Thank you 💛

I've been really struggling with eating lately. Even small amounts of soup seem to make my stomach worse, to the point where I'm afraid to eat anything.

I don't have a diagnosis yet, so I'm just trying to figure out what I can do to get through the day without making it worse.

If you've been in a similar place, what helped you eat even a little bit of food? Thanks for any advice 💛

I know how it sounds but I'm at the point where even thinking about food makes me nauseous.

Gastroparesis-like symptoms, 24/7 nausea, and the worst part is explaining it to people who just say "eat something".
If I could eat, I would.

I'm not asking for a diagnosis. I just need to know I'm not alone in this.
Some days I feel like my body forgot how to be human.

How do you cope on days when even water feels like too much?

CW: medical gaslighting, bedbound

Hi everyone, 23F here.

\*\*Today's crash:\*\*
\- Woke up: HR 51 bpm laying down. Felt "okay" for me = 1/5 spoons.
\- Stood up: Instant grey-out, felt like veins tearing in my legs.
\- HR jumped to 151 bpm in 30 seconds. Collapsed back to bed.
\- Now: 0/5, bedbound. Any movement = PEM. I can add a photo if needed.

\*\*The human barometer part:\*\*
Weather changed + doctor appointment yesterday = 48h crash. My body tracks pressure better than any app. Anyone else?

The POTS/hEDS part:
\- 44 kg, can't gain weight. Mitochondria hate food.
\- Joints sublux constantly. "Joint dislocator" is literal.
\- All tests "normal". Autoimmune ruled out.
\- Doctor said I'm "bored at home" and refused sick leave. Gave me CBT leaflet.

Asking for shared experiences, not medical advice:\*\*

1. How do you document the 51→151 jumps so doctors believe you? Tilt table tips?
2. What helps with the "torn vein" leg pain + adrenaline surges when bedbound?
3. Human barometer coping tips? I'm so sensitive to weather/pressure changes.
4. Any scripts that worked to get a new PCP to listen? I'm in Poland/EU.

I'm isolated and scared. My last post got removed for "incivility" when I was just describing symptoms. If this is too much, I can delete.
Sending spoons to anyone reading. My mitochondria are offline but my heart is with you 💙

\[Edit: Thank you for existing. Reading "me too" helps more than CBT\]

Hi everyone, I have severe ME/CFS and I’m pretty sure I’m going through a gastroparesis flare right now. It’s making everything harder.

For me the worst symptoms right now are:
Nausea that won’t go away, even when my stomach is empty
Feeling full after 2-3 bites
Bloating and pressure that feels like my stomach is stuck
No appetite, but I know I need to eat to avoid crashing

I know everyone’s different, but I’m curious:

What are your most typical symptoms when you’re in a flare?
How do you manage to get through the day and actually eat something?
Anything that helps you personally - food, meds, positioning, tips?
Any advice for getting through this time when everything feels worse?

I’m at the point where even thinking about food is exhausting, so I’d really appreciate hearing what works for you all.
Thanks for being here 💚

I'm writing here because I can't keep explaining to everyone that I need to "go to the doctor." I know. I can't right now.

I'm not looking for a diagnosis online - I just want advice on how to not worsen my condition while I'm at home and waiting for the moment when I have the strength to deal with doctors.

What I'm dealing with now:

Severe chronic fatigue that prevents me from doing basic things

Eating problems - food often sits badly, I get nauseous and full very quickly, even small amounts are hard. I don't have a diagnosis for this, but eating often ends badly

I'm exhausted by doctors and traveling to other cities. Just thinking about it makes me feel worse

I'm looking for advice from people who have been in a similar situation:

What helped you get through the tough times at home?

How can I manage my eating when my stomach doesn't work well without making it worse?

Any tips for pacing when even eating and getting up is too much?

Thanks if you read this far. Even just "I understand" means a lot. 🐙💙

I’m in that place where words feel too small for how bad it is.
I have MS, CFS. Every day is my body saying “no” to just existing. Standing up makes my heart race, eating makes me nauseous, and resting doesn’t help because I’m already resting 24/7.

The sensory stuff is brutal too. Even people talking in the background or a TV on feels like physical pain. The light hurts my eyes and head. It’s like my nervous system has no filter anymore. A normal room feels like an attack. I’m scared I’m scared so much, and I feel like I’m disappearing. People say “rest, pace yourself” but what do you do when you’re already at zero?

I just need someone to say “I see you” and not look away. If you’re in this place too - I’m with you. We shouldn’t have to fight this alone.

Thank you for reading this. It helped to write it.💙🐙
I’m so scary..live.

I have ME/CFS. My heart hits 130bpm just from standing. Some days I can barely eat.

Lately I’ve been feeling completely alone with it.
I reached out when I was scared and struggling, and got silence, “it’s normal”, or blame.
I started thinking maybe I’m the problem. Maybe I’m too unstable, too much to handle.

But here’s what I’m trying to remind myself:
Chronic illness shows you who stays when it’s hard and who runs.
And being left alone doesn’t mean I deserve to be alone.

If you’re here and you feel the same:
You’re not crazy. You’re not difficult.
You’re sick, and you got left with it alone.
And that’s not fair.

I’m posting this because I need to remember I’m not the only one.
If you’ve been there too, I see you.

I have ME/CFS.My heart hits 130bpm just from standing.

Yesterday I asked my boyfriend - who works in a hospital - if eating almost nothing for 2 days is dangerous.
He wouldn’t answer.

When I told him I was struggling, he ignored me, said “it’s normal”, or blamed my illness.
When I cut a bit of my hair because I felt completely out of control, he broke up with me. Said “you broke my heart”, “don’t talk to me again”, “find someone else”.

But knowledge doesn’t mean he knows how to support someone.

Now I’m alone with this.
And the worst part is: you start thinking maybe I am the problem.
Maybe I’m too unstable.

But the truth is, chronic illness shows you who stays when it’s hard and who runs.

If you’re here and you feel the same:
You’re not crazy. You’re not difficult.
You’re sick, and you got left with it alone.
And that’s not fair.

TW: discussion of surgical pain and chronic pain

Hi everyone, flair: very severe.

I noticed something from psychology and observation, and I wonder if others feel this too.

When someone has surgery, for example gallbladder removal, they get immediate care. Flowers, presents, hugs, time off, and a lot of empathy. For about 10 days. People understand post-surgical pain because it is visible, acute, and has a clear end date.

Chronic illness pain is different. It is invisible. It has no end date. For me with Very Severe ME/CFS, the pain is 24/7: allodynia from a ponytail lasts 3 days, bone-deep flu feeling, joint pain from EDS. It is often stronger than acute pain, but because there is no bandage or scar, the empathy stops.

I am not saying surgical pain is not real. It is very real and deserves all the support. I am saying that chronic pain is also real, and it is lonely because it is invisible.

The hardest part is not the pain itself. It is the grief of watching the world show up for 10 days for others, while you are in year 10 with no flowers.

Does anyone else struggle with this visible vs invisible difference? How do you cope when you see the "10-day care" happening around you?

No medical advice please, just sharing experiences.

Hi everyone,

I'm new to posting here but I've had ME/CFS + POTS for 15-20 years, severe.

I tried posting on r/POTS about immediate full-body crashes after "easy" errands and asked how to explain this to family/doctors without sounding crazy.

Instead I got:

1. Comments saying "that's not PEM, PEM is delayed 12-48h" and "sounds like POTS not ME/CFS" - medical gaslighting + gatekeeping.
2. My post was removed by mods for "Rule 2: no diagnosis requests" even though I was asking for communication support, not a diagnosis.
3. The comments diagnosing me were left up.

I'm honestly shaken. I just wanted support. I set a boundary in my post saying I don't engage in debates for health reasons, and it was ignored.

Is r/POTS known for this? Where do you all go for actual support without the gatekeeping?

I'm bedbound today after that post + errands. Thanks for reading. Just feeling very alone.

Edit: I have a doctor appointment in a few hours. I'm scared they won't believe me either after this.

Hi, I'm crying typing this at 5am after another 4am wake-up with HR 113. I need gentle words please :3

**The shoulder pain:**
It's not a normal injury. It's a deep, toxic ache across my left shoulder/neck, like someone hung a heavy coat on my nerves. It goes from 2/10 lying down to 8/10 after standing for 5 minutes. My arm feels weak and heavy. Lying down helps, which makes me think it's blood flow related?

**How it's destroying my life:**

1. **Work:** I had to quit. I literally cannot stand. After 10min my HR is 127, I'm nauseous, dizzy, and the shoulder pain makes me want to scream. No income now. Terrified.
2. **Daily life:** Can't cook, can't clean, can't carry groceries. Washing my hair in the shower = agony. I'm 21 and feel 80.
3. **Weight:** Down to 44kg/97lbs because the nausea + pain kill my appetite. I want to eat but my body says no.
4. **Sleep:** Wake up 4x/night with racing heart and shoulder pain. I don't remember what "rested" feels like.

**POTS connection:** My HR is 58 lying down, 113+ standing. Obvious blood pooling in legs. The shoulder pain seems directly tied to being upright. Does anyone else get this. I'm so scared of being told "it's just anxiety" again, if i go doctor soon.

**My question:** Does your POTS cause "coat hanger" pain that stops you from working/living? How do you cope? How do you get doctors to believe you?

I don't need medical advice, I just need to know I'm not crazy and that it can get better. Gentle hugs only please. Thank you for reading this novel :3

Hi everyone,

Long time lurker, first time posting. Having a really rough flare and my anxiety is through the roof. Hoping for some empathy/support :3

**Stats:** 23F, 44kg/97lbs, unofficial POTS but matching symptoms for 8 months.

**Today's HR data from my watch:**
- Lying down: 60-75 BPM - feels "normal" for me
- Sitting: 75 or 80 BPM
- Standing: 127 BPM - instant nausea, blood pooling in feet/legs
- Night: dips to 56 BPM + 4 wake-ups. Exhausted.

**Other stuff:**

1. Constant nausea, no appetite. Forcing small salty meals.
2. Left shoulder pain - dull ache, worse when in move. Blood pooling related? Anyone else?
3. Frequent urination - drinking 2-3L + salt, but peeing like 15x/day. Is this normal for us?
4. Compression socks 24/7. They help but my feet still look purple/red when I stand.

**Mental health:** Honestly feeling really alone. Just blocked someone who kept dismissing my symptoms and my compression socks 🫤. Told me "you're fine" when I said I wasn't. That mess.

**My questions:**

1. Does your shoulder hurt during flares too? The blood pooling connection is scary.
2. How do you deal with people not believing you? The gaslighting is worse than the tachycardia sometimes.
3. Any tips for 4am wake-ups with racing heart?

Not asking for medical advice, just... have you been here? Does it get better? :3

Thank you for reading. Gentle hugs only please.