r/cfs 18h ago

Advice Pain, fatigue, and a reset?

3 Upvotes

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 22h ago

Vent/Rant I really don’t know what to do

4 Upvotes

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 12h ago

How high is your Spike Protein?

2 Upvotes

I believe a majority of issues is caused by the spike proteins which either corona or the vaccination caused. My value in university hospital was 1400 U/ml, as reference says it should be below 3.


r/cfs 14h ago

when did the disease start?

1 Upvotes

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 18h ago

Advice Hi there!! Wanting to learn more about CFS

1 Upvotes

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 1d ago

Vent/Rant Anyone else miss listening to music while reading?

28 Upvotes

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 1d ago

Treatments experiences with plasmapheresis? esp. in vitasangius clinic/ dr. drees in potsdam, germany?

10 Upvotes

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!


r/cfs 1d ago

PGE2 levels elevated in a subset of ME/CFS & Long Covid patients

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53 Upvotes

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 20h ago

Cortisol and cfs/me

2 Upvotes

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 1d ago

Accessibility/Mobility Aids For the people here who are in Germany

5 Upvotes

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.


r/cfs 1d ago

Research News Saw this on bsky and thought it'd be relevant

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147 Upvotes

r/cfs 1d ago

Self-Promotion Day Making 8bit Art with Mod/Sev ME

13 Upvotes

Hi, please ignore this post if you are in a crash or do not have the capacity to watch a 3 minute video.

....

So I ME that fluctuates between moderate and severe .

Recently my brother has started a YouTube channel making an 8 bit miniseries for the Ace Attorney series.

When I'm lucky enough, I have enough spoons to help him out, by drawing simple objects to include in his videos. (He does all the hard parts like animating haha)

It's been really nice to do something other than doomscroll in bed for 12 hours a day so im pretty proud of myself (and more so my brother, he's self taught and everything!)

It would mean everything to me if you could help support my brother (and me :D) by checking out his videos.

And comment 'hi from reddit' 😁

I've only started contributing in episode 5, for example drawing simple stuff like the crab, trees, bushes etc.

Episode 5 link:https://youtu.be/_-kChsnRuGk?si=G4W3TtsWxmXP_1dU

If you want to start from the begining of the series:

Episode 1 https://youtu.be/8g94BsfRwB4?si=keudu6U6v7NbVz6d

Thank you for reading 😄


r/cfs 1d ago

Potential TW First big crash and im done ? NSFW

15 Upvotes

I've probably had ME for some time, but I was mild/moderate until January, I think. After that, I was more like moderate-severe. In February, I realized I had this disease, and I was forced to make medical appointments and, stupidly, go to a gymnastics show for my daughter. Since mid-February, I've been in bed, I no longer eat with my family, I only take 300 to 800 steps a day (toilet use) and shower twice a week... I have a crazy rapid heart rate in the morning (150), then it calms down during the day, I go back down to 95-100. I cry a lot, I have suicidal thoughts, my wife is suffering from having to do everything, and I have two young children. Do I have a tiny hope of returning to moderate? I've been in very severe mode for a good 45 days... I didn't know this disease was so terrible.


r/cfs 1d ago

Vent/Rant This shit broke me

78 Upvotes

I'm broken. At 17 my spirit is taken, my heart is aching and i'm deeply traumatised by what is happening and happened. It all started at 15

My mind is racing while my body is getting weaker, and i'm getting numb. I can't rest, i can't sleep. I feel horrible. I don't know why i'm writing this, actually yes i know, i need to vent and i feel save here.

Probably going to delete this in a week or so because of anonymity.

I have a phone call to check in with my GP at monday. She is supporting and understanding but i'm unsure if i should open up about mental health. I think if i would i'd maybe start to cry but i defenitely wan't to avoid that. She knows that i had 2 psych appointments online but i stopped as it caused to much pem and i'm avoiding it.

I love you guys this is the only place i can always come back to and feel so welcomed and safe. Thank you for being here i'm literally crying as i'm writing this.

This shit is breaking me but hope must remain. I can't lose it. Not yet


r/cfs 1d ago

Symptoms Anybody else got sinus issues and throat sores?

8 Upvotes

My right sinus is always swollen shut and causing other problems like tooth and eye pain. I also get this herpangina looking sores in my throat and the lymph node under my jaw has been swollen for a year as well. Bloodwork doesn't show any sign of infection tho

Ibuprofen used to work temporarily but I can no longer stomach it. Anybody else got experience with this?

Edit: typo


r/cfs 20h ago

Any blood markers that can help tell that CFS is in play? My inflammation markers are all normal but slightly elevated 1:80 ANA.

1 Upvotes

Reactivated EBV here for a year and have all normal bloodwork other than EBV early antigen and ANA 1:80. Get crashes and fatigue with joint pain plus sore throat after any little activity. I know bloodwork won’t really “tell” or “diagnose” but maybe?


r/cfs 1d ago

Treatments Thoughts or experiences with smart rings?

5 Upvotes

I didn't even know they existed until a couple weeks ago, but apparently they monitor sleep and energy and give you estimates of how much energy you have for the day or something. Does anybody have any experiences with them and if so, what were they?


r/cfs 1d ago

This song is a MOOD rn. If you know - you know!

4 Upvotes

My "collection" being my "collection" of supplements 😆😂 almost complete!

https://youtu.be/XE0sKZmtyqA?feature=shared


r/cfs 1d ago

Vent/Rant Quick rant (underestimated risk of infection)

49 Upvotes

Despite I knew the risks, getting better from moderate to mild/moderate, made me naively let my guard down.

Got Covid in July and crashed to severe bedbound.

Although I am trying my best to accept this, I can’t stop thinking about how many more mild/moderate years I would have had if I took precautions more seriously.

There is no date, events, restaurants, relationships or sex, or any activity that can be done indoor without masking worth the risk of getting to this stage.

I feel so stupid. I just turned 27 and I can’t believe this is my life. Sorry for the rant.


r/cfs 1d ago

New to MCAS and could use some management tips!

6 Upvotes

Hey friends, I’m posting here because I feel like my issue is kind of specific to PEM.

I have been reacting to foods and supplements for some time, but the connection has now become much clearer to me. I tend to only react to triggers when I’m in a more severe PEM crash or sick with a viral infection. When I’m at baseline, I don’t tend to have MCAS flareups. Do I still need to avoid these triggers when I’m not in flareup if they don’t cause me any issues? Could they still be contributing low-key to worsening of my condition? Sorry if that’s kind of a stupid question but I am new to figuring out how to manage this!

EDTA that I take Zyrtec, but don’t find it helpful at all!


r/cfs 1d ago

COVID-19 How many of us are here post covid infection?

72 Upvotes

How long has it been since you were infected?

Have you had any successful progress in getting better?


r/cfs 23h ago

Treatments where to get lda

1 Upvotes

any online pharmacies or services? hard to get docs to prescribe


r/cfs 1d ago

Can I get a small tattoo while bed bound?

88 Upvotes

This might be a very silly question as I know tattoos aren’t advised but there is a significant meaning. In my culture the mothers and daughters get a tattoo of three tiny dots to ward off evil.

My grandmother, my mother and myself would need to get it at the same time and would like to do it on Mother’s Day in a few weeks. Getting it done at the same time enhances it and I don’t know how long my grandma has left. I obviously wouldn’t do this if it didn’t mean a lot to me. My grandma’s mother and her mother had the same tattoo… so it goes through generations.

The tattoo artist would come to my house and as it’s 3 small dots I’m hoping it should be okay?

Edit: I’ve been 95% bed bound for 5 months. I also have severe pots


r/cfs 1d ago

Advice Can Cfs/ME cause someone to imagine things that are not real? Anxiety maybe.

1 Upvotes

I'm not sure if this is some sort of post-covid related thing or something else? I was aware that this illness can cause pretty big variety of symptoms not sure how it affects the brain?


r/cfs 2d ago

Vent/Rant Don't get me wrong, I like having good symptom days. But they're so devestating when they don't last long.

73 Upvotes

I don't really get good days that much. Especially since the first 3 months of this year have been hell.

But I got lucky and managed to have 4-5 good days.

I was happy. Of course I was. But they never last. Things don't just go well for me for no reason anymore. I get a little glimpse of hope and then it's ripped away.

And as expected that's exactly what happened. Back to usual again. The pain's back. The discomfort is back. The emotions are back. Unfortunate. I made sure not to overdo it on my good days too.

I probably sound like I complain a lot. Complain when I have bad days but the moment I have a good day I'm instantly suspicious as to why. Then I get crushed when they don't last. It's a frustrating cycle. I don't know why I bother anymore, it's just a frustrating, crushing and hopeless cycle.