u/thepensiveporcupine

Sufferers that are more well versed in science than me seem to be in agreement that the chance of seeing a life changing treatment in the next decade is slim to none. I’ve been hesitant to “overmedicate” myself because I was holding out hope that I could maybe naturally get to a mild baseline and hold on for a better treatment but I realized I was being delusional and I might as well put bandaids over my symptoms because it’s going to be a LONG time before I get my life back, and it’s possible I never will. It probably doesn’t seem like this big of a deal to those of you who have been sick for decades but I really hate medication, especially for an illness in which most of the medications available to us don’t touch the root cause. At this point, I don’t think there’s a single system in my body that isn’t being chemically altered…except for the one system that needs to be altered. So the rest of my life is just dedicated to remembering to take certain pills at a certain time and having to treat myself like a guinea pig and deal with side effects, for what? I mean, my only other option is to spend money I don’t have on even more experimental treatments, or just give up completely and focus solely on pacing and risk getting worse from my unmedicated comorbidities.

If you need to lay down, do you FEEL your blood pressure rising? Rn it seems counterproductive to be on a medication that makes it so that I need to be upright when I feel like what I actually need to do is spend more time laying down but I have to take this because I don’t want my doctor to think I’m noncompliant. I don’t care if my blood pressure is high if I don’t feel it, I’m more concerned that it will make resting more difficult.

Edit to clarify: I have not started it yet, just want to know what to expect

I wouldn’t even consider myself severe but I just can’t take this anymore. I don’t know what I’ll do if (probably more of a “when”) I become severe or very severe. Why do I feel like I’m handling this so much worse than everyone else? I hate being sick, I just wanna wake up one day and feel like I’m back to normal. When I feel like this, I get angry that nobody can figure out this illness and that there’s no promising treatments on the horizon. I get so angry at the thought that I have to feel like this for the rest of my life and it’s not getting any easier. Why can nobody end my suffering? I’m so mad at everyone who can’t help me. It feels like nobody is angry enough.

I keep imagining a future in which I’m no longer sick. When this is all over, I wanna just live alone in the woods and take care of several animals. As I thought more about this, I realized that I sound like Lennie from Of Mice and Men and probably won’t get my happy ending.

I crashed last week and seem to be out of the worst of it but slightly before the crash I started to feel really dizzy. This happens even when I’m lying down with my eyes closed, in fact, that might make it worse. It’s worse at night and is triggered by thinking too hard, swallowing too hard, or breathing deeply. It will feel like the room is spinning and my brain just stops working. It will last for a few seconds before I panic and the adrenaline snaps me out of it. This makes it hard to fall asleep. At first I thought it was just a PEM symptom but now I’m beginning to think I’ve developed a comorbidity like vestibular migraines or possibly CCI. If this is a ME/CFS symptom then why does it happen and how can I make it stop?

I’m just getting out of a pretty bad crash brought on by a period of a few days in which I was anxious about the future and depressed about the state of my life. I didn’t even think it was THAT bad but apparently my baseline is so low now that even that was too much. Now that the brain fog cleared up a bit and I can start actually thinking about my life again, the depression is back, and with it I seem to be feeling worse again so I’m intentionally avoiding thinking about things. But wtf, I can never feel a negative emotion ever again? While I’m going through one of the worst things a human can experience? This isn’t sustainable. I’m not talking about managing it, as I know the general advice is “the only way out is through”, I CANNOT handle any negative emotion without crashing so it seems I need to avoid them entirely.

Disclaimers: Yes, I am seeing a therapist. No, I will not get a new one because I’m comfortable and don’t have the energy to update a new one on all my lore (plus this one is very accommodating). Also not willing to go the medication route because I‘ve been there and done that, antidepressants don’t fix the problem and I learned that I don’t metabolize them well. Plus I’m on a million different meds and concerned about polypharmacy.

One of the worst parts of crashing is being unable to take care of my hygiene. It’s actually one of the things I fear most about declining as well, since I don’t know how much longer I’ll be able to shower regularly on my own. At baseline, I shower (sitting down) every other day. During flares I will shower every 2 days. Now I’m in a pretty nasty crash and today was supposed to be a shower day but I don’t think I could do it safely. I’m hoping I’ll be able to tomorrow but I’m afraid I won’t.

I have sensory issues when it comes to the feeling of greasy skin and hair and smelling my own body odor. I start to get itchy and I suspect my own dander makes my allergies worse, which worsens inflammation. I’m also concerned about the risk of yeast infections or UTIs. Ugh I wish hygiene didn’t take so much energy. I’d feel so much better if I could snap my fingers and be clean :(

Idek if I’m in a crash or if this is just a new, worsened baseline. I’ve been feeling flu-like and weak but it genuinely feels like my brain is mush. I have trouble thinking…it hurts to try to finish sentences in my head, I forgot names and words, and reading on my phone is getting more difficult. When I try to push through the fog, I feel nauseous, weak, and a sense of vertigo. It feels like I’m on a boat that’s spinning around, this is even just when I’m lying down. I got my blood pressure taken at the doctor and the top number dropped by 20 when I stood up (I believe I went from like 110/70 to 90/66 in less than a minute). I definitely feel this lightheadedness on standing but I think my BP runs low even just laying down. I go from having a high HR to bradycardia with PVCs. I’m also more sensitive to light and movement. And my muscles are weaker, I’ll have moments where they seem to just turn to stone. Idk why I feel so much worse, the only thing that seems to have changed is that my emotional state has worsened but aside from that I feel like everything has actually gotten better…better air quality, I’ve been eating less sugar, doing less, but I guess I’ve been more anxious and depressed and this is the price I have to pay for daring to grieve my life…

There’s a lot I’m worried about, particularly an upcoming appointment, and I’m just so worried it won’t go well and I don’t know what to do about future care. All this stress just has me feeling…weird. It’s not even like a usual crash, I just feel weird. Like my body is shut down but not in the usual crash way, it’s hard to explain. And now that I’ve manifested it, the appointment probably will go poorly because my brain is mush and I probably won’t be able to explain anything well. I probably just sabotaged my future care and will be stuck with my previous provider who gaslights me and who I didn’t end on good terms with…

I’m only in my 20s but I’m just so over life. My teen years sucked and my life never took off because I got sick right before I could start a career. I’m stuck in my body, dealing with bullshit I never would’ve tolerated prior to getting sick. I have no real options anymore. If I were to go by what my mind is telling me to do, I’d run away, delete all my socials, and start a new life. But how the fuck am I supposed to do that when I struggle just to get around my own house? And with what money? This just couldn’t have happened to me at a worse time and although I’m an atheist I just can’t shake the idea that I’ve been cursed. I want nothing more than to just undo this curse.

I always knew that nice people were far and few between, but since getting this illness I’ve come to realize that even the nice ones aren’t that nice. People are determined to believe this disease is fake even when presented with evidence that shows otherwise. I believe it’s actually the majority of people who think it’s psychosomatic, even when they’re nice to me it feels like there’s that bit of doubt that I’m not REALLY as sick as I say I am. It makes me feel like nothing is ever gonna get better for me because the quality of my life depends on other people, and they have proved time and time again that not only do they not give a shit about me, but probably want me dead.

I’m on the severe end of moderate so I’m pretty limited in my mobility due to a combination of severe muscle weakness and POTS. Sometimes I will get an adrenaline surge or feel very anxious and will feel a strong need to move my body to get that pent up energy out, although I know I would crash if I went on even a super short walk. I also get this after meals when I can feel my blood sugar spiking. I could feel that my lack of movement is damaging my body, but movement is also damaging my body. Either way I feel super uncomfortable all the time and like my body is a complete disaster.

I never quite felt comfortable using this app but somebody gave me a free armband and now I feel obligated to use it. My main problem is that I feel like getting a notification that I’m in my exertion zone if I’m in a situation I can’t get out of (like an appointment) or even if I’m just sitting there would stress me out and make it impossible for me to actually rest. It’s also worth noting that emotional distress has been my demise for the entire duration of the illness, since it’s nearly impossible to pace.

It’s so terrifying to feel myself forgetting words, not comprehending the things I read, not knowing how to respond to people, and losing track of time. And then when I force myself to think, it feels like I’m spinning around in space and I feel nauseous, oxygen deprived, and like I’m on the brink of death. Especially when this is in combination with the physical symptoms, feeling like my muscles are turning to stone and I may one day never be able to move again. I hate it so much. I wish it would stop happening. I can’t force myself to pace better or make better lifestyle choices either because I have no sense of discipline. I never have, it’s partially how I ended up this sick to begin with.

As much as I hate the physical symptoms, there’s just something about the brain fog that when it flares, I start spiraling thinking I’ll never be able to use my brain properly ever again and I desperately wish I can get reprieve. I’ve pretty much accepted that I’ll never be able to exercise again but being able to use my brain to at least 90% would be a fair compromise I think…

I wanna be free. I’m at the age where I should be taking risks and pushing my body to its limit. I wanna make money, exercise, travel, just feel like a human. I’m supposed to spend the rest of my life pretending to be dead until I actually am? Sounds like a scam to me. Every day I’m stuck with the memories of my old life, yearning to go back, and wondering what my life could’ve been like. I wish I could at least see it. I wish I could see how pretty I was supposed to be, the job I was supposed to have, all the friends I could’ve made, my future husband and kids and whatever else. I know that’s not how life works though. None of this is fair, it’s not the life I wanted. It’s among the worst things I could’ve imagined for myself. I’m angry about it 24/7 but can’t express it because of course, punching a pillow or screaming takes up too much energy than my stupid body can produce.

Fuck this stupid body or brain or whatever it is. I never should’ve been born if this is all I was gonna be.

I hear mixed things about this. For more severe patients, sunlight is too overstimulating and many have heat intolerance. Mild patients tend to report that being out in the sun helps their symptoms. I’m moderate but more on the severe side and I’m wondering if it would help me to try to get a bit of sun. Any other moderate-severe patients manage to get some sun this summer?

I developed severe POTS almost 3 years ago after I got COVID while experiencing withdrawal symptoms from tapering off of Lexapro. Several months later it became apparent that I also had ME/CFS, and have been mostly housebound since. I have had no periods of relief and seem to be getting worse. While the severity of symptoms do fluctuate, I have never had a remission and have never felt like I could return to normal. I genuinely feel like my brain or nervous system is damaged, and given that this all started with SSRI discontinuation, I firmly believe my brain is involved.

I’m also autistic and have suspected hypermobility so I feel like it was a matter of time before my body “broke” in some way, but I genuinely believe I’ve suffered a neurological injury that can’t be repaired.

Thanks to this illness. It ruined everything. Now life is a million times harder with only a small fraction of the pleasures that healthy people experience. I don’t enjoy anything, I always feel awful, I have no money, no accomplishments, nothing. No purpose. I’m just in a constant wait mode. I know I’ll be very severe at some point but I’ve spent this past year pacing just enough to delay it but I won’t be able to for very long. I’m getting ready to just give up on life altogether but I’ve been delaying that too.

Primarily because I wanna know how to fix what’s wrong without fucking something else up. Being told to accept that science moves slow just isn’t good enough for me. I wanna know why I feel like shit and I want to know when (or if) it will end. I don’t know how to explain to people what’s wrong and why I can’t do things because I can’t even understand it myself.

Maybe I’m just hoping this is the case to give me peace of mind in knowing we’re closer to a targeted treatment than it seems but idk. Do you think it’s possible that somebody, somewhere, knows what’s causing PEM or how this disease is triggered? Is it possible that someone has found a way to get rid of PEM, and possibly cured themselves of it?

It’s hard to ask these questions without getting conspiratorial. Part of me hopes there really is a secret cure being hidden because that means there theoretically is a way out.