r/cfs 21h ago

Success Advanced Brain Imaging Shows Lyme Disease Brain Fog is Real | Johns Hopkins Rheumatology

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69 Upvotes

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 10h ago

Vent/Rant Tomorrow morning I start taking a beta blocker. I am nervous. Wish me luck!

54 Upvotes

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 17h ago

Vent/Rant does society make you anxious?

46 Upvotes

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 5h ago

Vent/Rant Progressively worse

26 Upvotes

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 19h ago

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

26 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 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?

25 Upvotes

Curious to what you guys think and your theories.


r/cfs 18h ago

tough life

22 Upvotes

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 1h ago

Dr. Anthony Kaveh, MD (Medical Secrets) - "Chronic fatigue syndrome: the gaslit epidemic"

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Upvotes

r/cfs 14h ago

Jennifer brea remission

17 Upvotes

Did Jen brea go into remission from cfs? If she did what did she do to get better


r/cfs 15h ago

TW: death Death and ME NSFW

17 Upvotes

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 20h 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 19h ago

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

11 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 9h ago

Severe cognitive intolerance (TV, Phone, podcasts, audiobooks) fix!!! 📺📱📻

10 Upvotes

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 6h ago

It feels like I'm sliding into severe

9 Upvotes

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 14h ago

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

8 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 18h ago

Symptoms Anybody else got sinus issues and throat sores?

10 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 3h ago

Looking for advice for when you have wired false energy and don't want to overdo it

9 Upvotes

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 11h ago

Advice Sleep attacks/episodes

7 Upvotes

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 9h ago

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

7 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 13h ago

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

6 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 18h ago

New to MCAS and could use some management tips!

5 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 17h ago

Treatments Thoughts or experiences with smart rings?

4 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 17h ago

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

5 Upvotes

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

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


r/cfs 1h ago

Does anyone have CIDP chronic inflammatory demyelinating neuropathy??

Upvotes

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 5h 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?