We literally share a bathroom. My family called me retarded because I'm shutting down and don't want to get sick. If I get worse from this I could just kill myself, I don't know.
Just sucks. Doesn't matter what I eat or do I still crash and feel like shit for hours after. It'll probably get even lower.
I have an MRI today at 5 pm and I'm terrified. Brain and spine mris. I don't want the contrast because of mcas and my body has been EXTREMELY sensitive to anything. I don't think I could handle it. Has anyone done it or should I not? I also got a permanent tinnitus spike last mri and my bad left nerve side kept itching the entire time. Everything sucks.
My left side is always tight. I can list lots of reasons why. My jaw is also misaligned. I have tmjd. My vision in my left eye is worse than my right. My right side is mostly okay, less inflammation and whatnot. Problem is, I can't get my vision to work together. I need to rule out bvd but I don't have the money. I feel zero emotions ever since December 2024. Dpdr constantly. I get floaters bad in my left eye. I have zero libido. My neck is always tense. I can no longer picture things in my head when I used to have 5/5 clear thought vision in my head precovid. I've been a whole mess. I cant distract myself. My brain feels like it's fighting itself to process things together. Does anyone else struggle with this? I feel like killing myself it's unbearable.
I have diagnosed reactive hypoglycemia but no endo wants to figure out why....that's all I know. I'm basically bedbound atp. Normally, blood sugar runs low in my family. I experience fatigue and anxiety relating to both. My face also burns and flushes. First was after I ate, then second was 3 hours later.
How do you know if you're experiencing pem if your symptoms are random and you feel shitty majority of the time? I do know that eating is a trigger for me, it makes me crash instantly, but that could be something else... I just have chronic fatigue 24/7 that disables me. I cant tell if pain or brainfog flareup is specifically pem or my body is just failing on that day.
How do you know if you're experiencing pem if your symptoms are random and you feel shitty majority of the time? I do know that eating is a trigger for me, it makes me crash instantly, but that could be something else... I just have chronic fatigue 24/7 that disables me. I cant tell if pain or brainfog flareup is specifically pem or my body is just failing on that day.
My brain barely functions but I also can't think the same way I used to. All I did was create. All gone now.
Every time I eat I crash horribly from low blood pressure and I get very reactive hypoglycemic. It's been a year+ now since this started happening and I've had it on record of it happening but I've received no care for it at all. Doesn't matter what I eat or drink, always happens and I have to fight passing out every time. I get zero energy from food at all. I ate just a sweet potato, bam I'm out for the day. I'd rather starve myself because I'm terrified of eating now. My endocrinologist sucks because I've shown signs of adrenal issues and she only started giving me spirolactone for my excessive hair, and even though I saw her previously for these issues she said to me "do you have proof of these episodes" ....YES!!! YOU MADE ME DO A MONITOR A YEAR AGO!!!! My stool is always flaky and orangish looking or greenish and I have severe constipation 24/7. I also have scoliosis so idk. Sleeping has never given me energy. I have to get a cpap soon so I'll see how that ends up, but I have diagnosed vocal cord dysfunction and struggle breathing even when awake so whatever.... I'm so fucking confused on what to do because I feel like I'm a joke and as you can see healthcare does NOT want to help me. I have little quality of life now. The only thing that gives me any amount of energy is caffeine, but I'm severely anhedonic and I can never focus my eyes anyway. I cant afford bvd testing. Heeelppp. Does anyone know what to do.
Okay I don't know if it was just coincidence or not but I just started taking dandelion (it's really cheap and a natural antihistamine I suppose) and kid you not a GIANT glob of snot that's been stuck in my sinus for like a week and giving me eye pressure just released into my throat I couldn't believe it. Not even Benadryl or pepcid helped me in that regard. Apparently it's also supposed to alleviate head pressure. Like I said, idk if it's coincidence but wow that felt crazy. I feel like 40 percent better after that. If you're not afraid to try a different herb or supplement maybe try it and see how you feel. Dandelion tea is really cheap also.
Thinking of taking fish oil and ginkgo biloba together for a bit as an experiment. My legs and arms often go numb and I experience some blood pooling and consistent brainfog. Not much has really helped. I have a lot of health problems that exacerbate this issue (like scoliosis and syrinx for example) so it's hard telling what is what, but the cfs has GOT to stop. I'm willing to try whatever since doctors aren't helpful. Has anyone tried this method? Has blood thinning helped anyone?
Seems like a nerve thing. I get random deep itches, no redness or anything. Just feel itches that last a few seconds in any part of my body. Does anyone know what this is or if they cured it?
So I have a syrinx and just got confirmed I have scoliosis in my lumbar spine. I have about every symptom you can imagine with eds just have no one to diagnose me and my PCP is clueless on who to send me to.... Just dealing with the "rare" things. Does anyone else here have either a syrinx or scoliosis and would it be caused by chiari or tethered cord because I haven't been able to find anyone to figure those out either. I feel like all of this is connected in some way but no proper ideas on how to treat or what to do. I have severe gi issues all my life and I went to get an appendix X-ray and that's how I found out I also have scoliosis. I was never in an accident that warranted a syrinx to form.... It was an incidental finding (even though I am showing symptoms). Idk what this post is about I'm just feeling clueless and lonely as a zebra.
So I have a syrinx and just got confirmed I have scoliosis in my lumbar spine. I have about every symptom you can imagine with eds just have no one to diagnose me and my PCP is clueless on who to send me to.... Just dealing with the "rare" things. Does anyone else here have either a syrinx or scoliosis and would it be caused by chiari or tethered cord because I haven't been able to find anyone to figure those out either. I feel like all of this is connected in some way but no proper ideas on how to treat or what to do. I have severe gi issues all my life and I went to get an appendix X-ray and that's how I found out I also have scoliosis. I was never in an accident that warranted a syrinx to form.... It was an incidental finding (even though I am showing symptoms). Idk what this post is about I'm just feeling clueless and lonely as a zebra.
I already have bad posture, a syrinx, and now confirmed scoliosis. I have a fuckton of health issues. Don't know what caused what, or what's causing things for me. I've struggled with constipation and gi issues my entire life. All of it is really affecting me. I know scoliosis is mostly idiopathic but does anyone know what I should do in my case? Could my syrinx cause scoliosis or tethered cord? If anyone has any ideas at all. I'm probably in the rare minority here since syrinxes are pretty rare (1/100,000) apparently. Just feeling guilty for being alive I guess.
I went to get an abdomen X-ray for my awful bowel movments and severe constipation. I'm extremely backed up. They noted "dextroscoliotic curvature of the lumbar spine". How bad is this? Does anyone else have scoliosis? I never knew but it makes a lot of sense. You'd think my gastroenterologist would note that constipation is common if you have scoliosis but nah. No doctors care about this condition.
Just wanted to share that lithium orotate 5mg once at wake once at night is helping my flight or right response. I'm FAR FAR FAR from cured, but it seems like one of the only supplements that is helping me calm my nervous system down. I've gotten better sleep (even with diagnosed sleep apnea). Stay safe everyone. Just wanted to share in case someone is looking for something else to try.
okay probably not what y'all want to hear... but I am FAR from recovered. I have a very very long unpredictable road ahead of me, but I wanted to share this small victory. I managed to clean my room without any sort of stimulant of the sort. not taking any pain meds either (I prefer not to but besides the point). my muscles do ache, but I think it's more so due to pots or deconditioning over months of inactivity. I became a lot more clicky after covid unfortunately, it's still there but I'm trying my best to be a functional human being. I also went to an event today (wearing a mask) and made over $125 selling some of my old stuff that I no longer need. I feel okayish. Obviously I'm a little scared but I think today was a win. Just wanted to share some of the small victories, anything is possible. Don't give up, even if it seems impossible.
sorry for low IQ post I'm pretty brainfogged atm but I need the best cohesive test for this shit, maybe the 3. I suspect I've had bartonella for 10+ years due to bad neuro symptoms after being in a flea infested home. I have had a tick on me years ago. so long-term infection. I'm not made of money but I need to know. what test has helped you the most? my parent will only help pay for one so I need for it to count. thanks everyone
has anyone recovered from anhedonia or dpdr? I recovered decently in 2024 and I was very happy, but I've been reinfected in 2025 and I've developed a million other health issues since. I would love to pass my time with art or talking but I feel little to no emotions besides despair and I often feel poisoned in my brain. has anyone managed to get out of the head pressure lack of emotions or creativity stage? I miss daydreaming. that kept me sane.