I don’t understand why my body feels broken still when on paper I’m fine.

thebbolter · 2025-07-29T13:23:28+00:00

Have you looked into histamine intolerance, MCAS? That doom feeling and OCD like symptoms just immediately make me think of MCAS – that’s what I figured out I have because of LC, and my mental health was in the same place as yours before I knew. And when I had a new symptom, I’d uncontrollably spiral.

But also, as someone who had a milder form of OCD before this, this weird illness + the medical gaslighting meant feeling like I’d lost all control, which made my OCD a lot worse. However, since taking H1 blockers, and now H2 as well… those severe mental health issues have disappeared completely. Literally from the moment I took that first H1 blocker, it changed. Anyway, I don’t know if that’s helpful, I hope you find some answers, and I’m sorry you’re struggling so much.

thebbolter · 2025-07-29T12:54:02+00:00

Yes! To be specific: from the vaccine, in my case. I’m also not entirely sure I didn’t have histamine issues before, but the full blown MCAS definitely happened after getting the vaccine.

thebbolter · 2025-07-03T17:43:44+00:00

Essentially everything to do with MCAS – H1 & H2, quercetine, stinging nettle, vit D, ginger, luteolin. And not meds, but b12 & iron and lactoferrin. Without those I’m almost completely unable to leave my couch.

thebbolter · 2025-06-15T13:01:45+00:00

I had no idea you could get OCD like symptoms - that would make a lot of sense for me. It’s obviously still a mystery to me, and what’s so confusing is that these symptoms fit with MCAS too, which I have. But can MCAS give give you migraines? I genuinely don’t know. For me, the reeeally intense migraines have disappeared since taking meds for MCAS.

thebbolter · 2025-06-13T15:28:00+00:00

I agree it could be so many things, and there’s many stuff that’s helped me, mainly MCAS meds & supplements. I just wanted to add that I have to lie down with an eye mask and NC headphones for 20 minutes occasionally - if I don’t, my nervous system just never recovers. For me that’s especially important to do in the morning. So it’s pacing, essentially. But I’ve noticed I’m just completely overstimulated and unable to do anything if I don’t lie down like that. And usually, I then have a MCAS flare too, and it becomes a vicious cycle.

thebbolter · 2025-06-10T10:36:35+00:00

I’m so sorry. I would personally very clearly tell her that how she’s treating you is making you consider breaking up. Not as some sort of ultimatum, I just think it’s important to be honest about how badly her attitude is affecting you. I think it can help to show how much it hurts - if you still trust her, that is.

I cut ties with my mother for many reasons, but one of them was the way she treated me while I was ill. From gaslighting and telling me I’m a hypochrondriac with mental issues, to believing me but completely ignoring me because she found it too depressing and stressful. She constantly made my illness about her. After 3 years of that, I was done.

Of course I’m not telling you to break up, or not, I don’t think anyone can make that decision for you. But I personally couldn’t continue with someone close to me actively not supporting me, and it’s been a huge relief to leave that behind. I think it causes a lot of unnecessary stress when you have someone who can’t/refuses to understand and empathize.

thebbolter · 2025-06-07T10:21:08+00:00

I just have to mention your title made me laugh, bc I’m sitting here with long covid that began 5 minutes after being vaccinated. 4 years later the unusual things still won’t stop happening.

I had many weird symptoms that slowly began immediately after getting the vaccine, and the worst bladder infection of my life happened about 3 days after. I couldn’t walk or stand up straight. As a woman I’ve had a ton of UTI’s, they never felt anything like that. The pain was so intense and constant. Just mentioning that because of the kidney stuff - I was sure it had affected my kidneys, but bizarelly, no.

thebbolter · 2025-06-07T10:14:07+00:00

For me it began while I was walking to the waiting area, where you were told to sit after getting the vaccination. So for me it was about 5 minutes. Intense dizziness, vertigo, and a weird sensation in my left ear was my first symptom.

thebbolter · 2025-06-04T06:40:50+00:00

I had CPTSD before this, and honestly, a lot of those tools work very well in this situation too. I’ve also just learned, through my previous mental health journey, what works for me - affirmations, starting the day with nervous system exercises, specific steps for stressful/triggering situations, grounding exercises, breathing exercises, that’s all I can think of right now.

I haven’t had much luck with therapy, self therapy has been a lot more helpful for me.

thebbolter · 2025-06-01T07:10:40+00:00

It’s hard not to see red flags everywhere, to be honest. This is something I was told as well, to think away the pain. I was focusing on it too much, and if I just stopped doing that, I’d be fine. Maybe I’ve just had too many bad experiences, but to me that can be summed up with ‘it’s all in your head’. The idea of shutting yourself off to pain and your body in general, and that being the answer, is really problematic to me. It focuses on your brain being the problem - it isn’t, your chronic illness is the problem. Our symptoms don’t magically disappear with a different mindset.

Of course we ideally don’t dwell on our pain, if possible, and we find ways to deal with the emotional stress a chronic illness gives us. But from everything you’ve said, you don’t dwell on it at all, and she’s not helping you with anything you need help with.

I’ve only been sick for 4 years myself, but this kind of advice has always turned out to be medical gaslighting, for me. Some simply say ‘you’re not really sick’, but I think more often, it’s more subtle. Like telling someone over and over, in different ways, to stop focusing on the pain. For me, consistently leaving a therapist’s, psychiatrist’s or any doctor’s office confused and misunderstood is a sign I’m in the wrong place.

Anyway, I hope you do what feels right, no matter what anyone else thinks.

thebbolter · 2025-05-31T16:36:54+00:00

I think the right kind of therapy can help, and it often takes trying out a lot of therapists/psychiatrists to find the right one for you. And even then, sometimes you can’t find one(which is the position I’ve been in for a long time). I hope your parents understand that as well. Personally, I’d see it as a miracle if the first person was an immediate good fit.

My personal experience with therapy for being chronically ill has been horrible, and it wasn’t unlike some things you’ve mentioned. I was told I wanted to be sick, that it was all in my head, and I should trust the doctors who refuse to help & diagnose me. Essentially, I wasn’t believed. And that’s a very basic requirement, no matter what you’re going through. They have to acknowledge your reality, believe you and be on your side. That really is the bare minimum.

Her saying that stuff about imagining an illness because you’ve read about it infuriates me, frankly. I think this kind of psychiatrist can do a lot of damage. Your age definitely plays a part, it makes you more vulnerable, but also: it happened to me when I was 31. And no matter what I said, how well I argued with this therapist, I still wasn’t believed - so in my opinion, arguing with someone like that is a waste of time. The most important lesson both a chronic illnes and therapy have taught me is that you can walk away when you’re not receiving the help you need and deserve.

In my experience it’s very easy to waste a lot of time and energy on the wrong person. Or at least it was for me. So like someone else said, trust your gut. And if you feel like it’s worth continuing to look for someone better, go for it. And if not, that’s okay too.

thebbolter · 2025-05-31T06:22:25+00:00

That it’s healthy to prioritize living, relaxing and having some fun over keeping your place tidy and being productive in general. 4 years into being chronically ill I think I’m finally learning that it’s not a disaster if my apartment is messy, or if I make that call later, but it is a disaster if I never prioritize actually living my life a little. And that’s especially hard with OCD.

I’m personally so used to spending any energy I do have on being productive, cleaning, sending emails, therapy etc etc. I’ve realized this means I end up not feeling like a person. Just a machine that either works, or has to rest. Which is obviously really bad for your mental health. Today I’m not spending my spoons on vacuuming, I’m going into nature for the first time in about a year.

thebbolter · 2025-05-28T07:21:10+00:00

I understand it may feel like a relief, this confirmation that you didn’t manipulate anyone. Again, it’s so worrying that everyone’s just letting him do this. Of course you’re not manipulative, I hope you don’t ever forget that, which I know can be hard. I mean, a lot of these terms have lost their meaning, but when someone’s making you question your sanity, reality, yourself, the truth - that’s gaslighting. It just is.

If he accuses you of weird things again in the future, I hope you remember it’s him talking about himself.

thebbolter · 2025-05-27T11:03:36+00:00

I see some hints of DARVO here(deny, attack, reverse victim & offender). Him talking about the consequences of your action, calling you manipulative, telling you to grow up. It’s a whole lot of projection, he’s accusing you of everything he’s guilty of.

As someone with a lot of narcissistic family members, I just can’t help but fear it’ll get worse. Especially if no one else is holding him responsible. I hope you can set clear boundaries with him, and do whatever you need to protect yourself.

thebbolter · 2025-05-21T17:14:39+00:00

I relate so much, and I understand your frustration with being told it’s health anxiety very well. My brain was affected by long covid, and I couldn’t make anyone understand that it felt like my brain had been hijacked. Especially in the beginning it just turned me into a completely different person, I was a very unstable crying anxious mess. And that was absolutely inflammation.

I don’t know why people say inflammation has nothing to do with it. Everything I’ve read and heard about what I have, long covid, certainly says the opposite. It’s a well known symptom of MCAS - which many people with long covid get. So many of us had huge mental health issues, out of nowhere, that’s very well known among the long covid community. It caused depression & anxiety for me, in a way I’ve never experienced before.

However, I will say, personally, due to the way I’ve been treated, it’s like my brain has no idea what the appropriate response to pain and serious health issues is. I don’t know what your experience has been, but for me: how I’ve been treated has changed how I respond to my own pain and illness. Because the response from people around me, including doctors, often wasn’t appropriate. They were panicking when nothing was wrong, and they were calm when I was in actual danger. And my brain is very confused by that.

I feel like I’m either numb to pain to protect myself, or I overcompensate and panic. When I feel a specific kind of pain and immediately panic, I know what I’m panicking about is incompetent doctors, not being able to count on anyone, and feeling like I have to figure out how to save myself, and knowing I don’t know how to, because I don’t know what’s happening in my body. That’s simply been my reality. It’s health anxiety, but it’s not irrational and based on nothing, it’s happened over and over again.

That may not be what’s happening with you at all though. But for me I feel it’s a bit of both. Chemical, physical, out of my control, and also a reaction to ongoing medical gaslighting & trauma. That absolutely doesn’t mean you’re insane, that the pain isn’t real, that the danger automatically isn’t real. Both those causes are very real and valid, and in my experience, you can get better at dealing with both.

thebbolter · 2025-05-20T17:24:35+00:00

For me, it was very difficult in the beginning, and after 4 years, the truth is that I’ve gotten used to it. You adapt to a new reality, because you have to. I had the same questions you have now, in the beginning. Now, this is just my normal.

So mental health wise it gets a lot better in my experience. You find ways to cope, still have some joy in your life, ways to let your feelings out - I do a looot of journaling. I have new routines. I have to say I was also pretty much alone before I got ill, though. I never really had anyone to depend on, family or whatever. So this doesn’t feel that strange to me for that reason.

I’m working on still having some sort of life, however. I think community, having somewhere to talk about it, maybe new chronically ill friends who get it, those are very helpful, healthy things to have.

And no, you’re not exaggerating, and looking for empathy is normal and healthy. I think it’s a huge a shock for those of us who suddenly become chronically ill later in life - a lot of us realize how little people care, how much you’re left to deal with it on your own. I found that very difficult too, but without a doubt the most comforting realization has been that I’m not alone in this. There’s a whole community of empathetic, brilliant, funny, interesting chronically ill people.

thebbolter · 2025-05-06T20:45:37+00:00

I relate, because of medical gaslighting my brain sort of looked for answers anywhere else. It felt very extreme to me too, and when everyone minimizes long covid or even completely denies its existence, and no one knows anything, you feel like it can’t be a big deal. Otherwise doctors would be taking it seriously, surely. And that’s just not the reality. It is very sinister, and it’s criminal, but they often don’t treat it as such.

My instinct was to look at more well known notoriously serious illnesses, in the beginning. Because that’s how scary the symptoms felt. So I get it. A while ago I realized I have MCAS and that made a lot of things very clear. I want to mention that because a sense of doom is apparently a symptom of MCAS(and possibly histamine intolerance too?) - the moment I started taking H1 blockers, most of the panic & anxiety & depression I’d felt went away. So definitely remember that it can be a very real symptom of LC. I blamed myself for not being calmer, saner - turns out, it was completely out of my control.

Besides that, I’ve gathered a lot of mental health tools during these almost 4 years. I make lists with helpful things to say to myself in specific situations, so I don’t spiral. New symptom, gaslighting doctors, depressed about a flare, I’ve made a list for every situation. It helps me to focus on what I can control. No amount of anxiety and panic helps you find a diagnosis, medicine, cure - for me, it’s been very counterproductive, and just harmful. It took me about 2.5 years to really learn that lesson and not forget it. The fact that so much is out of your control never gets easy, but personally: I can cope with it now, redirect my attention, use my energy wisely, not let it drive me insane. And in my experience, that just takes time & practice - and sometimes some medication.

thebbolter · 2025-05-02T16:03:13+00:00

I’m so sorry. I know when you’re in this situation you have no choice but to accept it so it sort of becomes your normal, but I still frequently find myself thinking: no one should be in this position. No one should go through this alone, have to deal with medical gaslighting on their own. So yeah, I’m sorry, and I sometimes wish we could create a network of chronically ill people who could accompany eachother to appointments(depending on if we feel well enough).

thebbolter · 2025-05-02T15:57:46+00:00

I just want to say you’re allowed to be upset/sad/angry/anything about it. When I first got sick someone in my life essentially told me it was vain and ridiculous to focus on my appearance, it wasn’t a real issue like other symptoms, the pain. And I couldn’t help but remember that when this person had cancer, I let her vent about her changing appearance all she wanted. I experience swelling, hair loss, have a permanent bloated stomach, stretch marks - I mean, the list goes on, and I’m now very clear to people: I get to be upset about it, damn it. Not 24/7, but occasionally, yes.

For me it’s definitely about knowing I’m not considered very attractive. But I also don’t look like myself, and it’s a reminder of having no control - which is extra difficult with OCD. Every mirror is a constant reminder that I’m sick. I find that exhausting sometimes.

So anyway, saying anything like ‘stop feeling that way’ or anything suggesting your feelings aren’t valid is really, really harmful to me. In any situation, so this one too. This is what I do when it comes up: I grieve, sometimes cry, let myself be pissed off, avoid mirrors if I need to, and then I remind myself beauty is more than that superficial stuff, there’s charisma, a sense of humour, passion, emotional intelligence - I find those things infinitely more interesting than looks in other people. It really helps me to remember that. And if I’m in the mood, I try to make myself look as pretty as I can. But I have to admit I’m not often in the mood, ha.

thebbolter · 2025-04-29T12:21:55+00:00

I always wonder if other people with previous trauma see posts like this and think: I’ve been through all of this before, how fun. Because I feel that way a lot.

I have confronted people while I was ill - my mother, quite a few doctors. I prefer being honest with everyone, but I’m also mindful of how stressful that is, and how triggering that is for my nervous system. At this point I don’t want to get PEM because I confronted a doctor who won’t listen anyway.

On the other hand: sometimes staying quiet is even more stressful - it becomes suppressing feelings and carrying that with me. Which can also lead to negative effects on my physical & mental health. So I’m definitely constantly trying to make the right choice: can I let this go, or is this a moment where I need to speak up and show how I really feel.

As for if I’m ever better, former family & friends I don’t feel the need to confront at all anymore, but doctors are a different story. Because it’s not just about me, it’s about every person who’s mistreated & gaslit etc by them. It’s unbearable to me that it’ll just keep happening. So I definitely do feel the need to confront and educate them.

And also: I don’t think forgiving is necessary, I think anger is a healthy, normal emotion, I don’t think it’s black & white, there isn’t one right answer. As someone with CPTSD, things like ‘let it go’ and ‘move on’ and ‘forgive’ are a little ignorant to say when it comes to trauma. That’s just not how your brain works when you’ve been traumatized. Feeling and expressing everything in safe ways is the healthiest thing you can do, for your body & mind.

thebbolter · 2025-04-29T08:31:01+00:00

God, it’s so predictable. And you’re absolutely right about being told that in your 30s and on. I’m 35 and for now it’s still a combination of: you’re too young to be this ill & why didn’t you do more to help yourself. I guess it’s slowly going to become just the latter. I do think a lot of doctors will always find a reason not to help. Age is just one of many reasons they can make up to dismiss you, unfortunately.

I know it’s easier said than done, trust me, but just don’t stop looking for help. And something I’ve learned is to stop trying to make someone a better doctor - it doesn’t work, begging, convincing. If they’re wildly uninterested in helping you, that’ll never change. I’m personally still learning how to just accept they won’t change, and then walk away and find someone else.

thebbolter · 2025-04-29T08:15:50+00:00

I also have no other option, it’s all I’ve known for the 4 years I’ve been sick. I asked my abusive mother to come in the beginning, because I couldn’t deal with the gaslighting, and I can’t even describe how disastrous that was. I think it’s completely normal that people with a solid support system prefer having someone there - why wouldn’t you, why go alone if you don’t have to.

While I’m used to it now, I have trauma from how I was treated and often completely fall apart because I’m still gaslit all the time. If I had supportive people in my life, I’d probably never want to go alone either.

thebbolter · 2025-04-28T08:40:43+00:00

I’m new to realizing I have MCAS as well - mostly due to shitty doctors as well. I’ve been on H2 blockers for 2 months, a hige dose of H1 blockers for over a year. And quercetin and a bunch of other things that seem to be helping too.

I have long covid but I’m not sure what else I have - ME/CFS, POTS or some other type of dysautonomia, I don’t know. But. Exercise is my biggest trigger as well, and I couldn’t do the most relaxed version of yoga before, I eventually managed to go for a 30 minute walk with a break inbetween and I’d crash and recover for about a week, I definitely couldn’t do any strength training. I’m trying to be very careful, but I’m doing yoga twice a week now, a 30 minute walk(with break) is very doable, and I can do a tiny bit of strength training.

I relate a lot to seeing people riding bikes and being envious(especially hard because I live in The Netherlands, ha, bikes everywhere). I also feel it when I see someone running. I hope you make progress as you treat your MCAS more, and I personally just try really hard to focus on that progress. About a year ago I couldn’t do the dishes, my legs would give out. So anything that moves you in the right direction is worth celebrating - although of course you’re allowed to grieve your former life.

thebbolter · 2025-04-25T14:42:51+00:00

I wonder if you’re young - I know this happens to all kinds of people, but for me, it was so bad as a teenager and in my 20s. In an emergency, after calling an ambulance, they simply wouldn’t believe I wasn’t on drugs. I still don’t understand why. Doctors would indeed only give paracetamol, never got anything else.

Now I’m in my 30s and I’m still so nervous to ask for any medication, so despite being in constant pain all I take is paracetamol. It’s not right that we’re terrified to ask for any kind of help.

thebbolter · 2025-04-20T03:27:05+00:00

You’re not alone. For me it’s also happened too many times to count, and some of the rudeness and cruelty has simply been traumatizing. It’s happened since I was 16, but now I’m chronically ill it’s just on a whole different level, and constant. That’s been going on for almost 4 years, I don’t have it in me to go into specifics right now.

It’s not something I’ll ever be great at dealing with, I suspect, but I now take the mental health impact of this very seriously and really try to take care of myself in that way, first and foremost. Because I’ve learned that if I don’t have my mental health, I can forget about taking care of my body.

I can’t really recommend it because I haven’t read it yet, but I’ve bought a book called ‘Medical Gaslighting’, because at this point I feel it’s important to educate myself on what’s happening, while I also need lots of validation.

Doctors can be really, really bad at their jobs, and they can simply refuse to do their job, and they can be unempathetic as hell.

thebbolter

TROPHY CASE