u/Another_throwaway446

It doesn’t matter if I do nothing extra. I did NOTHING. Same food, same entertainment, same level of activity and sleep. I just felt good. No headache. Higher HRV and less reactive heart rate. Depression lifted. I DID NOT EXERT MYSELF AT ALL but I’m still paying for it. Now I’m in a crash. I didn’t do anything at all that would normally trigger a crash. It is seemingly just punishment for not feeling miserable for a few days. Again, I did *nothing* different. I watched the same videos and ate the same food etc etc. I was literally just not feeling like I wanted to die while doing my usual routine and now I’m being punished for it. I hate that improvement is never real and always just a dark omen of future suffering.

(The context of this post is that I have a severe disability which now keeps me inside in low stim activities every day.)

I just don’t in how to be interested in someone who I have no context for. I’ve tried making friends online but it’s just awkward. Sometimes people reach out asking if I want to be friends and say yes and try to talk but I don’t come across very well online I guess cause they never respond. I hate texting I hate trying to somehow have an interesting conversation online it feels so fake. But I’m lonely. It’s just that strangers online don’t really fulfill my loneliness.

I keep thinking about people I used to know. I keep thinking about this guy I worked with 4 years ago. In slow shifts, we’d get talking. He admitted something about his mental health and his feelings about the world that I felt too. I’d never heard anyone express it exactly the way I felt it. I remember the look in his eyes when he realized I was the same. To me it was really profound. Maybe he wouldn’t even remember. A few weeks later he stopped coming to work. No one seemed to know what happened. I fear sometimes that he ended his life but I’ve never known one way or the other. I think about him all the time and I wish I could find him. I know I never will.

I think about old coworkers, old friends. People who used to be in my life because we were both in the same place at the same time. Those were the connections that always meant the most to me. I don’t know if those people knew how much their presence meant to me. I can’t function without it. I can’t find community unless people are forced to be around me I guess. Or I’m forced to be around them. They all liked me, I know they did. But those kind of connections aren’t the ones that stay after you leave. Especially when you’re too disabled to even see your other friends.

I loved those people so much. I loved the people in my life so much. I cannot sustain or create those connections anymore.

I somehow ended up backing myself up with treatments to try and I’m feeling kind of frozen in indecision about which to go with. I am housebound, mod-severe for the last year. Suspected MCAS and pots, PEM, concussion like symptoms. Currently I take ultra low dose naltrexone (.5mg), coq10, Zyrtec x1 daily, magnesium, and just recently iron because my ferritin is low. Here’s all the potential new things I have in my possession/ready to go:

Upping the ldn dose
Oxaloacitate
Thiamine (vit b1)
Folinic acid (I have MTHFR gene)
Guanfacine
Ketotifen (my allergies have gotten worse with summer pollen)
Leaving for a different city for a week to stay in house that is confirmed to be mold free to see if there is mold in my house making me sick

It’s not a good idea to do any of them at the same time and I’m just not sure how to go about prioritizing. I have adhd which makes it worse 😭 I was excited to try Ketotifen but I heard some stories that made me nervous. I know I’m supposed to up my LDN dose cause it’s sooo low but I always feel a little weird when I up it so I’ve been putting that off too cause things keep happening. All of these things could have the potential to really help me but I just feel stuck :(

Basically I got Covid pretty bad but then recovered but then 2 months later I got a concussion which was also pretty bad but I was slowly recovering but then 2 months after THAT when I was about 50% recovered from the concussion I woke up one morning unable to speak and then by the evening couldn’t walk or eat by next morning couldn’t roll over or open my eyes now I’ve had severe me/cfs ever since. Sorry I’m always on this forum. Anyways I’ve been reading about anti virals for long covid but the problem is idk if I have long covid or not. Can long covid hit you 4 months later? Cause *something* happened that made me wake up unable to speak and then devolve over 12 hours into very severe ME but I just have no idea what. Like was it covid virus reactivating or something or was it all purely physical I just wish I had some way of knowing but doctors don’t care for finding “root causes.”

Basically that. Warm rice bag at the base of my neck is the only thing that helps the awful achy nerve pain at the base of my skull that I get during PEM or when I have a migraine. But I know that MECFS and MCAS causes brain inflammation and I read that heat will make brain inflammation worse so now I’m not sure if it’s safe for me to keep doing that. I’ve tried ice,which is what everyone recommends. Ice makes my symptoms worse and feels awful. :(

I’m mostly just wondering if anyone who knows more about the theory surrounding mecfs has any ideas about what this might be. It’ll be later in the day after I over exerted myself, but before PEM had hit. It feels kind of like thirst, but water doesn’t help. So then I think maybe salt, but salt doesn’t help. So maybe food, and I’ll eat some food, when that doesn’t help, maybe a different kind of food. But nothing helps.

One time, after over exertion, I broke my diet and ate fries and a shake and a burger, and the feeling ever came, and I didn’t crash. So part of me wonders if it’s just the need for carbs because my fucked up mitochondria are wasting so much energy or something? But I’m not really well versed I. How that all works. If anyone has any ideas pls share!

I don’t think I’ve ever truly rested in my life. Don’t get me wrong, I’m great at being alone with my thoughts, I can walk or ride the bus or sit by the ocean with nothing but myself. But I cannot close my eyes and lay still and be in my head. I never have. When I was a kid my parents had to sing me to sleep or I’d have a breakdown cause I hated being in my bed having to be still with my eyes closed. Then I learned to self medicate with media. Phone till I can’t keep my eyes open has been my sleep routine for 12 years, sleep depriving myself so that I’ll knock out the moment my eyes shut. If I am forced to observe the inside of my skull with zero sensory input, it is not restful. It is racing, churning, zooming. I actually really don’t know if a calm restful stillness is possible for me. I was forced my my illness to be still and in the dark for months when I was severe, but it was sickly, feverish, stuffy, anxious. It was not restful.

I have tried. So much. But any time I try to observe my body, just be present in my body and mind, I find these inherent anxieties that just seem like rocks at the base of my personhood that simply do not budge. The oldest one is climate change which I have had since about age 10. The rest have changed over time, but for the last 14 months, it has been: my dad’s declining mental state, my dire financial future, the disturbing actions of my government and the infection of ai slop into everything, the unending dirt and clutter that one accumulates just by being alive, and most obstructively, the fear that there is hidden toxic mold making me and my family sick.

This is what exists where rest is supposed to. It is like a thick sticky pool of tar at the base of my consciousness that I have row over, or an else be consumed. And I’ve tried plunging into it. I’ve tried many times. But I’ve discovered there is no bottom. It’s not an “the only way out is through” thing. I just end up covered in gross tar and feeling worse. So I stay on the boat. And the boat has to keep moving to stay afloat and it’s unstable and I feel seasick and I’m aware of the tar beneath me but at least I’m not covered in it.

Meditation doesn’t feel restful. It just feels like trying to build a raft over the tar. Somatic tracking just feels like sitting in the tar and going “look look look tar tar tar I’m in it see no don’t panic I’m in it and that’s fineeee here I am and it’s fine fine it’s fine it’s fineee here I am, drowning in the tar, I’m acknowledging it so it can’t hurt meeghhuhkjsbd”(*drowns again*).

How tf am I supposed to get the fucking tar out of my brain so that I can get out of my rocking paddling boat and be still for once in my life and maybe actually heal? 😩 Especially with the mold thing, and with MCAS and other environmental allergies. It’s like ocd. Once you get the idea in your head that your environment is poisoning you it’s really hard to ever feel truly zen.

I’m not split attraction, I feel sexual and romantic attraction the same ratio no matter what, I do the same sex activities, have the same number of crushes, find the same number of people hot, and watch the same amount of porn women vs men. But yet, with men, it’s like you dialed up the sensitivity dial. It’s the same feelings but stronger. All the same but the feelings men give me are louder.

But the thing is, sometimes I don’t really have the energy for the louder feelings. Sometimes they are so strong they overstimulate me. So my comfort zone is with women, that’s what I mainly seek out. But it just seems wrong to do when I’m feeling less with them. My orgasms feel just a little more flat, the butterflies in my stomach are a little softer instead of stabbing. But they still happen and I still enjoy it.

Sometimes I just wish I could open up the panel in the back of my brain and turn the attraction to women dial up to match the attraction to men. I actually wish for it so deeply, all the time. Because the way that it’s all the same feelings but just slightly dulled truly makes it feel like, there is something there, but I’m just being blocked by static interference, or like foggy glasses, muffled ears. Like if I just scrubbed those glasses and took of those things earmuffs and reconnected my brain, suddenly I could feel for women the way I so desperately wish to.

Idk if anyone will really know the answer to this, but I’m having trouble parsing info.

I buy full fat coconut milk, the type that is half or more coconut cream. I probably consume ~1/3 - 1/2 cup a day in oatmeal, smoothies, etc. would this make MCT oil supplementation redundant? I’d been reading all the benefits for my particular condition, which is neuroinflammatory, but then realized maybe I’m already maxing out whatever those benefits might be with the coconut fats already in my diet.

Honesty, unless they are talking about copious sugar, deep fried food, or charred meat, I don’t want to fucking hear it.

I just cannot tolerate the demonization of foods. I avoid the foods that give me hives. I avoid the foods that give me reflux. But I have to fucking eat. It makes me start panicking every time someone does this. People forget that some of us have fucking starved before. People forget that sick people need fucking calories and it’s scary trying to be well enough to consume enough calories. When someone tells me how one of my safe foods is actually killing me it makes me literally have a panic attack. I think I’d be dead without coconut milk don’t fucking tell me I can’t eat it. Oooh don’t eat sunbutter it’s bad for your brain. Get out and of my fucking face I didn’t fucking ask you. My brain feels better when I eat it so I eat it. Because that way I’m not fucking dead cause I’m fucking eating. I eat a well balanced diet all the foods I eat are nutritious it’s a rainbow of colors simple foods and it’s stuff I can access and make to keep me alive. So you should say good job and move on. Like wow you’re sick AND you’re managing to feed yourself? Amazing job no notes.

Okay so dementia runs in my family and when I got genetic testing not put me in basically the highest risk category for Alzheimer’s so that sucks. I’ve had my eyes on ketotifen as the thing that might pull me out of my severe illness, but now I learn it is classes as the type of antihistamine with dementia risk 😭 I already have been taking Zyrtec for a year which makes me nervous but I think from my understanding is less of a risk. Has anyone had to make a similar decision? How did you weigh it? I’ve never had anaphylaxis, I’m able to eat without dying, but I have severe neurological symptoms and various skin reactions

Last year I was being carried to the restroom and could not speak, open my eyes, or chew. This year I have been cooking every meal, cooking for fun even, seeing friends for multiple hours, long car rides for appts with no crash, writing poetry, writing fics, doing voice acting, going outside. Last week I decided to experiment and rolled 3 blocks on my bike to the ocean. Ate dinner with a friend. It was great. I felt great. It didn’t feel like a push at all. I think if I’d just done that, I would’ve been 100% fine. But the next day I had another social engagement. I knew it was stupid, but it was someone I hadn’t seen in a year, and we couldn’t meet at my house because of a new refrigerator that means I’m unable to spend time in the living room without earplugs. So it was me who asked if we could leave the house.

We went to a cafe. I had to walk down a parking lot. I thought I’d be a little beat the next day but be fine. Maybe a day of PEM, like the one other time I walked a little extra this year. Stupid stupid stupid. Didn’t rest properly afterwards. I think I was upset that it was difficult and trying to prove to myself that I was fine. The PEM came on slowly which is how you know it’s bad. If it hits immediately that’s actually a good sign. This time it took 3 days. Now day 6 worse than ever. Shouldn’t even be typing this. I haven’t been in true PEM since December and I don’t remember how to summon the patience. I can’t remember how to get out. I rested all day yesterday and still woke up worse. I can’t believe I threw away a whole year of progress for one stupid social outing that wasn’t even fun.

It’s not the prospect of my own suffering that’s upsetting me. It’s the prospect of how it affects everyone else. I can’t do months of having every meal brought to my again, being unable to see friends, having to video call doctors. Missing people visiting from out of town, missing their play performances, being unable to keep up with shared interests. Letting down my friend who last week commented that I seemed night and day from last year. All the financial aide I’m supposed to apply to put on hold and thus putting more financial burden on my family. If I could just be this way and not have it effect anyone else, I could handle it. I could live like this indefinitely if I was living in some sort of pod that was payed for completely by the government or a very rich person with full service food and everything. But I just don’t think I can live like this again man I just don’t think I can.

My concussion gave me me/cfs so I just read a lot of cfs and long covid recovery stories. But ultimately it is a concussion that did this to me and I really wish we had the same resources, but it’s a lot harder to find the success stories for PCS :( I know not everyone gets better but I also know plenty of people do eventually

I'd love to hear stories of setbacks that you had along the way of recovery. I'm in a major one myself and could use an excuse to stop catastrophizing.

I'll go first since technically I've been improving well over the last year: I've had three major set backs, each brought me back to my worst, but I ultimately came out of them and was able to continue to improve. One was early days after getting too excited about crafting, about 3 weeks. Craniosacral therapy, creatine, and a heartier diet seemed to help get me out that time. One was middle days, after traveling and getting a nerve block for my head, which made me feel worse. Only a week and a half in bed and then back on my feet. One was just a small 4 days in April after hitting my head a bit, then back on my feet. Each time I returned to my previous progress point and was able to keep gaining abilities. I'm hoping I'll be able to say the same for this setback in time 🥹

I was doing so much better since January, expanding activity, almost never getting any PEM. But this week I left the house tow days in a row. The first time I was so happy, so encouraged, so amazed, I biked a few blocks slowly and ate a burrito with my friend by the ocean, and it was easy, didn’t feel like a push at all.

Then the next day I want to a cafe with my friends. That time, it wasn’t so easy, when I was standing order I felt very very faint, and afterwards I felt tired. But not horrible, just tired. Figured I’d sleep it off. But I got a horrific migraine that night that kept me up a bit. The next day, I felt kinda crummy, but figured again I’d sleep it off. The next day, even worse, fluey, body heavy, not tolerating any media. Today, can barely stand, heart rate through the roof, limbs hurt, writing this hurts, can’t speak. I’m doing all the calming things but I’m just feeling sooo dejected. 😞 I thought I was getting better. I don’t understand what is happening to me. I was extremely severe a year ago and I’m having trauma flashbacks from it.

I just want to understand why. Why has this happened to me, what did I do wrong, and why am I not better yet. Why couldn’t my body handle these things. Why did it take so long for the crash to fully hit. What is the actual mechanism that is making my muscles hurt and my throat hurt and my neck stiff and my brain not work. And why now, when I was doing so much better 😢 I’m thinking maybe I want it too bad. But I can’t help wanting it when everyone around me is constantly telling me that I’ll get better. I want to prove them right and I keep failing. I don’t know how to not believe my body is broken when it does this. It feels so immensely physical, all these sensations at the base of my skull like my own skull is strangling my body and brain of energy as punishment for my hope. Any insights to help me would mean so much 🙏

I am experiencing PEM for the first time since becoming more moderate after being severe. It used to be that PEM meant i literally can’t open my eyes and have to just lay still all day, have food delivered to me, etc. in a way, that was easier, it’s simple.

Now PEM just means I feel shitty. Not shitty enough to close my eyes and rest so I just try to do mild entertainment on my phone. I make my own food. The weird thing is, when I get up to make my food, I feel better. I’ll be struggling with head sensations, unable to tolerate anymore media, limbs sore and heavy, starting to feel really fluey, but then when I get up, move around, I get a new wind and feel more normal, and that’ll last for about 40 minutes and then I go back to feeling more crummy.

I hat I can figure out, is if this m and the movement is good for me or not, or if it’s “false” energy that is ultimately hurting me but I just don’t see it. I’ve been thinking a lot lately about how frustrating it is to have such a distinct, pin point able symptom as PEM but with basically no information or knowledge on wtf is actually happening or why. It’s so frustrating.

Okay so I’m going to apply to SSDI this year but I’ve been steadily improving the last few months and I’m worried it will make it more difficult to be approved because my doctors are all insistent “you’re getting better.”

Here is my problem: I am a 23 yo college dropout. I dropped out of school because of health issues. I worked since age 18, but I worked counter food service or factory work. I took these jobs because before I became severe last year, my fatigue was all mental. I couldn’t handle any job that took a lot of thinking. The physical aspect wasn’t always easy, at times I had to take months off, but it was as easier than anything else I could’ve been doing with myself.

I’m frustrated by the whole thing. So many older adults in these forums and such, or in stories of “partial” improvement, describe part-time working from home for their old job or a related field or expertise. I have no such thing. I was always monetizing the physical ability of my body. That was quite literally my only asset.

I’m frustrated because I didn’t have time to develop something to fall back on. If you already have put in all the energy to learn a skill and practice it it’s a lot easier to go back to it then it is to fully acquire a new skill. I hate the thought of being just as well as other people with ME but not being able to work like they are because I simply didn’t get to pre-load my life before I got sick. I hate it because other people will point to those patients and act like it should be possible for me.

What could I even do??

Okay so at this point it’s happened enough that it’s a real pattern. I have always had insomnia and trouble sleeping. I’ve pulled all-nighters many, many times throughout my life. I know it’s not healthy but it just happens sometimes. But I’ve noticed something strange: if I pull an all-nighter before a day of big exertion, I do not crash in the following days??

It’s known thing that sleep deprivation can mask CFS symptoms. Because being severely sleep deprived pumps your body with adrenaline. So that part is to be expected. But what confuses me, is that the effect is “true.” As in, there is no rebound. I just don’t crash. Three days ago I had my tilt table test for POTS, unfortunately I couldn’t sleep because I was so nervous. It screwed up the results because the sleep deprivation also dampened my autonomic response. But I also walked 2x my regular steps, rode in the car for 2 hours (which has always crashed me in past), was upright for 10 minutes for the test, and ate fast food afterwards breaking my diet, and I just…recovered. Felt like shit that day, slept, woke up, normal ever since. No PEM. That’s one example but it’s happened several times before. I had been couch bound for 10 months, but on a whim begged my friend to take me down to the ocean. Again, so nervous I didn’t sleep. I sat upright for 2 hours on a bench and with her and talked until I stopped being able to form sentences. Usually, that’s a really bad sign. But that time, I just went home, slept, woke up fine, zero blowback.

It’s so odd. It makes me wonder about the process of PEM. Like maybe it is some kind of immune response, and having a different crisis (the sleep deprivation) distracts my immune system? Or maybe the chemicals that my body makes to try to make up for the lack of sleep, also makes up for the broken energy processes in my body?

I’m definitely not advocating anyone try to test this, I would never do it purposefully. But it’s really weird when it happens.

I’ve only ever been with one person. It was a year and a half relationship and we started saying I love you pretty early on. I truly felt it. Sometimes I would stare into their eyes and feel so overwhelmed with love that I didn’t even know what to do with myself. I was extremely heartbroken when it ended.

But I’ve heard all these things about what “real” love is and isn’t, and it’s making me unsure. Because it was not a smooth relationship. It had a lot of issues the whole time. I often felt like I couldn’t handle it anymore and needed to break things off. Not because of them being terrible or anything, but just because we were both very needy, and wore each other out.

Now I don’t know how to determine if I’ve ever experienced love or not. I remember the moment I “realized” I was in love with them, and I did not doubt it at the time. Not one bit. I’d heard that when you know, you just know. And I did, or so I thought. But it didn’t feel like this giant, soul-enlightening thing. It didn’t make the sun shine brighter or birds sing prettier (I felt that way at the very beginning of our relationship, when I was giddy all the time, but that was before I felt I was in love).

Some have told me that it’s not real love if you don’t feel totally secure in the relationship. I never felt totally secure. We kind of knew it would end from the beginning because of our life situations. But I feel the loss of them in my heart still, three years later. So why would I feel that ache if it wasn’t love? It’s honestly just so confusing and I just wish I could understand for sure so that I know if I’m supposed to be searching for an even better feeling or if I’m just supposed to look for that feeling again. I have mild OCD and sensory processing disorder so it’s possible that just makes it more confusing for me also.

It’s kind of stupid because I wasn’t having a lot of sex before. So far in my life I haven’t even kissed someone I’m not in love with. I hadn’t been with anyone for a whole year when I got sick. But the thing is…I was always passively *hoping* for it, and fantasizing about it. Getting excited when I met someone new who was attractive. Getting to flirt with random strangers, have fun conversations with customers and then all my coworkers go “ooooh they were hitting on you.” Meeting a girl at a concert and letting her take me out. Crushing on my friends. Just the world buzzing with possibilities. I spent so much time building the confidence to see myself as sexually desirable, I never did anything in high school, I’ve only ever been with two people and I had so much more of myself to explore. It’s all I think about. I’ve always been a horny romantic lol. It’s no fucking fun yearning if nothing could plausibly come from the yearning. I’m so bored I just can’t stand it. I’ve sexted people a few times online just to try to feel something but that shit is just kinda sad and the people have always ended up being it great. And I rarely have the energy for that anyways. I’m so depressed about it. I have so many fantasies that have never been fulfilled. Even simple things like someone else making me climax on their own without my having to finish the job. But also more deeply held stuff. I see myself as such a sexual being, this is gonna sound stupid but I feel like sex is poetry and I had so much poetry to live out and I just don’t get to. I’m sad. I just want out.