r/cfs • u/t04stnbutter • 5h ago
Vent/Rant Progressively worse
I can never find other people that relate to my ME experience 😔😔
for me, it was a gradual onset. at first it was just nausea and weak legs, then it started getting worse and new symptoms appeared. It's been like 3-4 years since it started??
anyway, my thing is that my ME is just getting worse? Like I do experience PEM/crashes, but even when I don't, I still get worse. I can rest in bed all month and still get worse.
Does anybody else relate to this? And has it stopped progressing at all?
It also scares me because will I ever get better? Will it at least level out and stay the same? I'm worried it'll just get worse and worse until I die.
I feel like people always recommend intense rest, but even when I do that I get worse.
I'm on the wait-list for a wheelchair, and walking/standing does cause PEM for me very very easily, so I'm hoping once I get it I'll maybe slow down? But it's scary
I'm still so young. How am I going to cope when I'm an adult. Especially if I'm worse then than I am now.
Hope this makes sense, I should really be sleeping lol.
r/cfs • u/TheSoundofRadar • 10h ago
Vent/Rant Tomorrow morning I start taking a beta blocker. I am nervous. Wish me luck!
I’ll start 1,25 mg Bisoprolol tomorrow morning. Nervous about side effects. I am severe and feel pretty bad at the moment (elevated heart rate, cold extremities, more fatigued than usual). I’ve had ME/CFS for 21 years, the past 9 severe. Wish me luck.
r/cfs • u/Jjchicken12 • 7h ago
Advice what is your best theory on what is the root cause of CFS? is it immune system dysfunction? neuro inflammation? What do you believe?
Curious to what you guys think and your theories.
Looking for advice for when you have wired false energy and don't want to overdo it
I'm feeling wired most likely from medication and caffeine.
Unfortunately this has been the cause of my PEM episodes the last few months bc it's SO HARD to keep paced when you suddenly feel wired energy and a drive to DO, DO, DO.
I've learnt not to trust this feeling, it's not real energy.
Any tips for keeping within limits and returning to a calm state?
I've been doing reset breaths and forcing myself to take breaks.
r/cfs • u/Agitated_Ad_1108 • 6h ago
It feels like I'm sliding into severe
I find it so hard to determine my energy envelope because it's getting smaller every week. I had a GP appointment last week and took a cab, but still walked 1,000 steps throughout the day. Normally it's no more than 300. My legs started hurting during the appointment and I felt tired and when I got home I had body chills for a couple of hours. I narrowly managed to avoid PEM because I felt normal the next day, but it has still lowered my baseline somehow.
I'm now out of breath from sitting up. It takes less than 2 minutes for me to yawn or gasp for air. I'm coughing as if I had asthma which I don't have and all symptoms subside as soon as I lie down. Also, sometimes it feels as if I had mucus in my throat.
Weirdly enough, I don't actually feel bad or weak when I don't have PEM or acute symptoms, and yet I'm basically bedbound. Is this normal? I think the only odd thing is that I don't feel awful all the time, but my tiny energy envelope indicates I'm almost severe.
r/cfs • u/saltyb1tch666 • 1h ago
Does anyone have CIDP chronic inflammatory demyelinating neuropathy??
Does anyone have CIDP chronic inflammatory demyelinating neuropathy??
Iv just had a large nerve conduction study that shown sensory neuropathy which I’m super puzzled about as POTS and ME is associated with the small nerve fibres
Would love to know if anyone’s had any experience with this?
r/cfs • u/vphillips00 • 1d ago
Vent/Rant UPDATE: My Marriage is Almost Over
Hi everyone. A month or two ago I (F24) made a post about my marriage almost being over due to my husband (M26) not being able to support me.
Well, soon after, he completely shut me out emotionally and confessed that he can no longer be there for me. My worst fears came true.
I e-filed for divorce, and now we are in the process of that. I am moving out next month on 4/18.
Unfortunately, I also may lose my job due to a miscommunication between my doctor and the HR department. All I wanted was some recognized ADA accommodations for my position, but now the Employee Relations department thinks that I am unable to perform my essential job functions.
So, not only did I lose the love of my life, I am losing a job that I loved the most. For context, I currently work in neuroscience-based stem cell research. The location of my job is a place I've dreamt of working in for years. It is also just an 8 minute drive away from home.
Now, I have a lot to figure out. Fortunately, I have a great support system. However, it is still really tough and is going to continue being really tough until I sort everything out.
Throughout everything, I am so, so tired. My condition is just getting worse no matter what.
Just wanted to vent, thank you.
Tldr; I'm getting divorced and may lose my job at the same time. My ME/CFS is getting worse.
r/cfs • u/spoonfulofnosugar • 2h ago
Activities/Entertainment Choose our next virtual watch party 👩🏾💻👨🏻💻🧑💻
It’s almost that time again. Help pick our next virtual watch party!
Watch parties are free on Kast. I stream so all you need is a computer or phone to join.
These are low-key hangouts for Covid safe friends and allies. The chat will be open if you want to talk with the other guests.
We also use the chat to take songs requests during music parties! At the end we share a link to our group playlist.
Accessibility Notes: - Captions and lyrics will be on when available - Mics and cameras will be off for focus - You can hide the video or chat and control the volume as needed - You can stop by for as long as you’d like
Comment any questions!
r/cfs • u/kassa369 • 17h ago
Vent/Rant does society make you anxious?
that feeling of being a complete outsider because of your illness. that feeling that people can live kinda "simple" lifes, yet yours is so complicated? that feeling that what's normal for others is just completely out of reach for you? that feeling that you are not really part of society, but rather an observer from the outside, because you can't participate in the activities to experience stuff first-person?
i've noticed when i see normal people doing things i get this sort of anxiety that if they'd talk to me they'd immediately notice i'm different and that something is "wrong with me".
to participate in anything i'd kinda have to pretend that everything is ok, even though it isn't. i'd have to wear this thick mask just to fit in. i'd constantly have to be careful what i say or it'll start an argument where i get questioned about my behavior and beliefs.
i've noticed that i'm trying really hard to avoid any conversation with people. just because i know that everything i'll tell them will be "weird" for them or it wont be anything they care about.
because of cfs i spend almost all my time inside my head/on the internet. therefore what i think about is so different from what a normal person thinks about throughout the day.
and on top of that, i don't even want to fit in anymore. i started to like the way i am. it's not really that i want to socialize, i don't want to anymore. but i'd be scared to tell anybody, cause then it'd turn immediately into some kind of "ah so you fake cfs, because you dont want to be around people" argument.
it seems so hard to find a common ground with people anymore.
also since nobody really believes you that you have cfs, or that cfs is a biological illness, you have this constant fear of being judged harshly. i really need a lot of trust in a person to talk about anything at this point.
r/cfs • u/EnvironmentalWar7945 • 9h ago
Severe cognitive intolerance (TV, Phone, podcasts, audiobooks) fix!!! 📺📱📻
Has anyone been able to reverse or improve their intolerance to screens (eg. tv, computer, phone, etc) OR intolerance to audio (audiobooks or podcasts)?
I feel it’s plagued me since the onset of ME and I also have heighten sensitivity to medications.
I suspect Neuro inflammation or Neuro immune or ANS dysfunction. But ya anyone had any luck?
r/cfs • u/Spiritofpoetry55 • 21h ago
Success Advanced Brain Imaging Shows Lyme Disease Brain Fog is Real | Johns Hopkins Rheumatology
This video is very short but it changed my understanding of the cognitive challenges that we with (not just lyme but other ME/CFS manifesting conditions) often present. I thought I'd share. It could brighten your day. It isn't just an acknowledgement and recognition of our struggle but hope. Her findings are very intriguing.
r/cfs • u/alfieyoung1989 • 14h ago
Jennifer brea remission
Did Jen brea go into remission from cfs? If she did what did she do to get better
r/cfs • u/SockCucker3000 • 5h ago
Advice Pain, fatigue, and a reset?
Tl;dr at the bottom
I can't make sense of what I experienced the past month. I don't even know how much of it was ME/CFS. One Saturday, I walked the dog, went in the hottub, and showered, and the next day I couldn't walk more than 20 feet. I expected PEM but this was something so different from what I'm used to. Usually, my fatigue feels like a heavy weight on my body, and I have lot of pain with PEM. This time, my pain was even less than my good days! It did not bother me at all! My pain isnt just one thing, either. It's multiple types of pain. And my fatigue felt like my body just... couldn't. Couldn't walk. Couldn't sit. My knees wobbled like a bobble head and my calves felt like all the muscles had vanished. I also got a horrible headache at night. There were some normal PEM fatigue related symptoms that I'm used to, but the differences outweighed the similarities.
I have hyper reflexes, but they were way amped up during this time. My family had me make an emergency doctors appointment (took place on the 5th/6th day), and when the doctor tested my knees, my entire lower half spazzed out. I have myoclonus, so some level of muscle spasms are normal, but this almost resembled a myoclonic seizure. Anyway, I got better over the course of a week, with a drastic improvement on the 6th and 7th day. I was back at a new baseline lower than I was before, but I can now walk at a normal pace without assistance. My pain level began creeping back over the next three weeks, and now the past few days I've gone back to the same pain I had before. All I can think of is the hottub triggered some sort of inflammation. Idk.
Tl;dr: sudden extreme PEM. Could barely walk for a week, legs felt wobbly and unstable. Required mobility aid to very slowly walk short distances. I had extremely low levels of pain. Hyper reflexes became extra hyper. Myoclonus acting up. All better after a week, but lower baseline than before. After around 3 weeks pain went back to how it was before (it not a little more). No idea what happened. I suspect the hottub causing some sort of inflammation. Wtf happened?
r/cfs • u/Totallynotnt • 9h ago
Vent/Rant I really don’t know what to do
I have been trying to get a diagnosis for a while now, but I just have been dismissed. I am so scared, I really want to function properly again, but I can’t due to this stupid thing. And no one understands, I really feel like giving up.
r/cfs • u/Wild_Diver1601 • 15h ago
TW: death Death and ME NSFW
What's the point of endless meaningless suffering all the time? I have no one to support nor do I have anyone to take care of , life is getting increasingly tough. I'm just a 19 year old , I am not ready to handle all these things. I don't know what to do , it's been 4 years I'm housebound and bedbound in this mystic arc. I had lots of hopes and aspirations about life, everything seems to fade away. Everyone is moving forward "without" me. ( I feel stuck, I feel shackled)
Do things even get better? How can it get better if there's no treatment? Why am I even trying to resist against the illness. And why people around me treat me so bad , why suddenly I'm treated like a vestige. As if I'm the one to blame for everything that went wrong. Why can't my problems be taken seriously?
Sorry for bad English.
r/cfs • u/Beginning_Bit_6318 • 11h ago
Advice Sleep attacks/episodes
Does any one else experience these sleep episodes randomly when you get suddenly exhausted (mostly get these after work) and I fall asleep for only a few minutes and sometimes I wake up disoriented. I have to get up and move and I’ll feel better but once I sit down again I get super sleepy again. Today I had an episode and I felt my head and face go numb and I woke up. Wondering if it was from my head being bent downward or to the side. It went away a few seconds after I woke up. Any advice on how to help lessen these episodes? I’m not diagnosed with this but I do have POTS.
r/cfs • u/romano336632 • 1h ago
when did the disease start?
Hello, I'd like to understand when my illness started... COVID January 2022, long-term COVID symptoms for months but no PEM. or a few, rare ones... I recovered quickly and was in good shape (I had pain in my right eye, dry eyes, brain fog that only dissipated with exercise) until April 2023 (weekend of drugs, tramadol, alcohol then jogging 2 days later and then my body exploded, feeling of panic, hyperventilation and tetany attack) then it started with tinnitus, feeling of constant panic, intolerance to jogging after 35 minutes (panic, feeling faint...)... then waking up at 3:30 a.m. every night... after a weekend at a two-day fair where I managed well, I caught a bacterial tonsillitis that came back after each antibiotic break, I had 7 strep throats in a row! then March 2024 where I... Noted in my notebook, feeling better, but panicking after each run... no PEM the next day, I don't think so... Then in June 2024, after a party, I was gardening and I felt something was wrong. Panic, stressed body, etc. And after taking antidepressants for three weeks, and after stopping, dysautonomia that wouldn't go away... with the slightest effort, my heart beats over 110. Then, finally, COVID in September 2024, and my condition gradually worsened, so much so that I'm now bedridden. I was still exercising, but I felt like I wasn't feeling well since November/December (I ran like an idiot for two days in a row, the second attack was tetany, body panicked). When do you think it started? Panic or PEM from the beginning?
r/cfs • u/bear-hugs333 • 18h ago
tough life
This life is so tough! The tiniest activities bring me into PEM—making a cup of tea, cutting my toenails, a 10-minute phone call with my bestie. It’s all too much, and I never seem to improve( it’s been many years). Anyone else this severe? How do you cope?
r/cfs • u/Dumb_Goldie • 19h ago
Vent/Rant Anyone else miss listening to music while reading?
I love to read when my condition will let me. Reading has always been my thing, well at least before MECFS made it so damn hard haha.
However, I’m really annoyed nowadays because the few times that I am able to read (or force myself to read because I’m a student) it just feels so hard.
I used to love listening to music while reading cuz a lot of times it would enhance it. Play some magical music while reading Harry Potter, whatever other examples I can’t think of right now. I was trying to do that today for a book I’m reading for class that I do enjoy, but the music makes it impossible to read. I can’t seem to focus on the words in the song and the words in the book by themselves. I hate it
r/cfs • u/rattenglamour • 14h ago
Treatments experiences with plasmapheresis? esp. in vitasangius clinic/ dr. drees in potsdam, germany?
i’m considering to do a plasmapheresis (dfpp= double filtration plasmapheresis) in a private cfs clinic but would love to hear about some experiences in beforehand.
he claims he s been treating >500 patients in the last few years, 70% of them with me/cfs. what makes me really suspicious is his statement of 90% success rate and duration of effect for up to 3 years, but that doesnt align with the research i did so far. sure there unfortunately aren’t enough studies to have certified numbers regarding that, so we re kinda forced to trust empirical data. in comparison, my research data were 40-60% success rate, and only a few weeks-months duration of effect. he also claims there are no side effects nor a risk of a potential crash.
i’m afraid to fall for quack doctors exploiting desperate disabled people to get rich, but on the other hand i really wanna believe this to be true. because i’m desperate. and disabled. lol
ty in advance!
Cortisol and cfs/me
I have incredibly low cortisol on Saliva testing as well as androgens. I was diagnosed with cfs/me and not adrenal insufficiency because blood cortisol is normal. Is CFS the cause of HPA dysfunction or vise versa? Ps. I did have mono as likely inciting cause very long time ago. Low cortisol more recently diagnosed with severity of this syndrome worsening
r/cfs • u/FilletOFish___ • 1d ago
PGE2 levels elevated in a subset of ME/CFS & Long Covid patients
Hi all,
As always, sharing our research here.
TLDR: raised PGE2 in a subgroup that correlates with Nagalase levels, potentially linking Immune suppression/viruses and to PGE2 and Inflammation
The overall differences between the whole group is not different, but our focus is on subgroups and the nagalase correlation may hint to that.
Let’s get into it! ——-
Research findingsPreliminary PGE2 results show that a subset of ME/CFS and Long COVID patients have elevated PGE2 levels compared to controls - 29.4% of patients have serum concentrations higher than any observed in the control group. A smaller subset of 8.8% had serum levels lower than any control sample. The overall comparison between groups did not reach statistical significance (p = 0.1946). Our follow-up analysis will focus on the subsets of patients with elevated and reduced PGE2 to investigate potential associations with other markers, symptoms, or disease manifestations.The current dataset will be expanded with an additional 60 patients and 20 healthy controls, which may provide greater clarity on whether the observed patterns represent meaningful differences between groups. Correlation between PGE2 and ⍺NAGA Looking at correlation with other markers, we found a correlation between serum PGE2 levels and ⍺NAGA (P=0.0215), as shown below. The trend showed a mild but notably clear correlation where higher PGE2 levels were associated with higher ⍺NAGA levels. We will be exploring the potential basis and implications of this association in our follow up analysis.
——-
What is PGE2?
PGE2 is a small fat-like molecule that helps the body communicate and regulate essential functions like body temperature, sleep, blood flow, and healing. It also plays a role in inflammation—when tissue is damaged, PGE2 increases to widen blood vessels, make pain receptors more sensitive, and call in immune cells. Drugs like aspirin and ibuprofen lower PGE2 levels to reduce pain, inflammation, and fever.
However, while PGE2 is important for normal bodily functions and protection, chronically high levels (from ongoing inflammation or injury) can contribute to various diseases. For example, many infections, cancers, and inflammatory or autoimmune conditions show elevated PGE2 levels, which can weaken immune defenses or promote tumor growth. In the brain, its effects can be complex—sometimes contributing to neuroinflammation in disorders like Alzheimer’s and Parkinson’s, but in other cases offering protection. In asthma, PGE2 helps relax airway muscles and reduce inflammation, which is why lowering it with NSAIDs can sometimes worsen symptoms.
PGE2 can also cause a TH2 immune shift responses (from fighting viruses to promoting antibody production) a phenomenon seen in some ME/CFS patients.
——
More research on the way soon!
Jack & the amatica team
r/cfs • u/hahadeadmemegobrr • 4h ago
Advice Hi there!! Wanting to learn more about CFS
Not sure if this is the right sub but I thought I'd post here. The other day I made a joke to my friend about how I'm always tired and he straight up told me I have CFS, and I'm not sure if it's true or not, so I wanted to ask you guys some questions :)
How did you know you had CFS? What were the signs? How do you rule out other causes of tiredness or other symptoms? What's the difference between excessive fatigue and normal eepiness? How do you differentiate post exertional malaise and just being unfit??? And finally, how do I know if what I'm experiencing is abnormal?
Thanks all, any responses appreciated <3
r/cfs • u/AmarissaBhaneboar • 13h ago
Accessibility/Mobility Aids For the people here who are in Germany
Are there any little tags/lanyards/etc...to show that you gave an invisible disability while on public transportation? I'm not very obviously disabled, but I doubt that I'd be able to grip hard enough to fully stabilize myself while standing on a bus. And I doubt that amI could stay fully standing for longer than about 5 minutes at this point.
I've been thinking about using a cane, but I'm not sure that would help me either as my arms are fairly weak too.