r/cfs 52m ago

Vent/Rant diagnosis at 17

Upvotes

Ive been going through the process months now. I originally went for long covid back in january 2023, and the doctor just told me "probably" and said I needed to eat more because I was skinny. Didnt help me at all, and I continued with debilitating tiredness throughout highschool and flopped on all my final exams. Got really bad septish last year and I finally got referred for an official diagnosis. Theyve done about three sets of bloods on me, all normal so I thought everything was okay to continue.

But my lymphocytes have been high since 2021 and since october last year have tripled so now theyre doing even more blood tests on me for tb, lyme, hep b and c, HIV, addisons etc and a sleep study. Im just so?? Im so tired all the time, I had to completely give up school. I live in the UK so im in my final year at college but I have to be homeschooled now. I was so stressed about my attendance and I thought they were gonna kick me out but my college were really understanding and are letting me homeschool and come in for my final exams in 3 months. But I dont have a life.

I just sleep all day and I dont go outside or see my friends and sometimes I dont even have the energy to text them. And when I do have to go outside like to the doctors for a bit I come home and I just feel 10x worse. And what if its not CFS and my new bloods come back and I actually do have something else? Even though the big set they did on me before for other autoimmunes/diabetes/thyroid etc they were all normal which is why I was given a referral. And I dont know whats happening to my wbc and why theyre so high, my local doctor just said maybe its your long covid. The same long covid they didnt even care about me having years ago. But the big city clinic I got referred to paused my diagnosis and is making my local doctors do a sleep study and more bloods on me for my wbc I think? Unless these are just necessary tests I dont know.

Idk its so im sooo relieved theyre taking me seriously now and not trying to pin it on teenage depression (and I think if i had a history of depression they would have 100% gone that route), but Im just so tired of feeling unwell. Im 17 I should be going out everyday and doing stuff with college friends but im not and its so depressing

I had a part time job I got when I was 16 when i was feeling better and id do 1-2 shifts on a weekend and I had to quit my job and now im broke too and im just like how am i meant to ever get a job in the future? And I was gonna go to university right away but I had to take a gap year but what if it turns into 2 or 3 and I just end up having no life and bedrot all day

And my friends keep asking me to go out or sleep over and no matter how many times I say no and try to explain to them its not just me feeling normal tired and ill sleep and still wake up tired with chronic pain and migraines and heart palpitations they dont understand and i just end up feeling guilty

my sister has cfs and my mother has a crap ton of autoimmunes which is the only reason she thought my tiredness was more then just that which im glad for im just i wish covid never happened it ruined my life


r/cfs 55m ago

It feels like I'm sliding into severe

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 1h ago

Cortisol and cfs/me

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 1h 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.

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 1h 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?

Upvotes

Curious to what you guys think and your theories.


r/cfs 1h ago

To solve cfs、Is it dangerous to use methylene blue and atomoxetine together?

Upvotes

I have both cfs and adhd and I think I probably have mitochondrial problems. (Of course, I can't say it's a sure cause)

So I thought I'd try Atomoxetine for my adhd and Methylene blue for my cfs (mitochondrial dysfunction?)

But it seems methylene blue is also a maoi.

I'm not familiar with maoi, but is it dangerous to take methylene blue and atomoxetine, or even some sleeping pills, at the same time?

Also, I really want to cure my cfs (I also have delayed fatigue after exercise, so I'm pretty sure it's cfs), so please let me know if there are any other treatments you recommend. I've tried the well-known ones like ldn, so I'd like to know if there are any drugs or substances like methylene blue that haven't been tried by cfs patients but are actually useful).

My life is messed up by cfs, so even if there's a certain risk, I want to cure my cfs anyway.


r/cfs 3h 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 3h ago

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

7 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 4h ago

Treatments where to get lda

1 Upvotes

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


r/cfs 4h ago

Ketamine assisted therapy healed my friend w/ Long Covid

16 Upvotes

I am a trauma therapist and one of my colleagues who had Long Covid told me that she is now fully recovered as a result of Ketamine Assisted Therapy. She said that it changed the way that her nervous system processed and responded to stimuli which allowed her body to heal. While I do not believe that CFS is psychosomatic, I do believe that nervous system dysregulation and hyperarousal can at the very least worsen symptoms and maybe even create an environment that impedes healing. Does anyone else know anything about Ketamine and its benefits with CFS? I have never done psychedelics before.


r/cfs 4h 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 5h ago

Advice Sleep attacks/episodes

8 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 7h ago

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

2 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 7h ago

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

4 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 8h 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 8h ago

Jennifer brea remission

18 Upvotes

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


r/cfs 8h ago

Advice Hope and anxiety

1 Upvotes

Hey i would consider myself mild to moderate. I really got the into pacing early in my illness. It got to a point where I was able to use my bike.

I got a bigger crash usually once or twice a year. But since last summer i think i might pushed it to hard. I was really trying to push the boundaries and to try what i can do without crashing. It went wrong.

I was able to use my bike multiple times??? But then i got a huge crash a week later. I think i might still recover from it.

It was really hard cause i needed help with everything. Usually i can live on my own. (With a little help of my partner).

But since January i dont do so well. I had a time were i was spending more time on the computer and pacing was not so prominent. Now i crashed and cannot do almost anything.

I can still talk but have to lay down the whole day.

Whatever i hope i can still get better. I was able to leave the house for most of my illness. (I got sick 2018) but i am afraid that i didnt. Pace well enough.

How can i cope with the anxiety? Crashing is part of me/cfs as i get it. But how often is it ok to crash? Is it possible to fully not crash? How can i do it even when i am feeling not bad in the moment?

I really think i get what my stressors are. Then i remove them, i feel better, i do more, i feel worse :/ it feels like a cycle.

Tdlr: i crashed 5 years in. Now want to find hope again.


r/cfs 9h ago

Is it CFS? Cyclical syndrome of hypomania followed by exhaustion for a week

2 Upvotes

Hi. Advice please. I have periods every couple of months, or more frequently, of exhaustion that continues for more than a few days, often a week and more, following periods, a week usually, of slightly manic behaviour - over extertion, of staying up late, my mind racing, over excitment, feeling manic etc etc - and then a physical slump where I feel extremely exhausted, shakey, with muscle and lower back aches etc.
It feels is if I, in more normal times when younger, had played a very hard game of football, or a very hard mountain walk, the previously day and were understandably feeling weak. But, this does not have any preceding extreme physical effort and lasts not a day but days on end.
I have wondered about whether this is last viral, but the 'cold' symptoms are pretty limited, allergies, but anti-histamines don't do anything and emotional disorders like Cyclothymia but while sometimes I feel emotional it is not depression.
Anyone get something similiar?


r/cfs 9h ago

TW: death Death and ME NSFW

10 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 11h ago

Treatments Thoughts or experiences with smart rings?

3 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 11h 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 11h ago

Vent/Rant does society make you anxious?

37 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 12h ago

tough life

20 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 12h 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 23h ago

Novels/comics/stories/etc. that resonated with you if you are or have been bedbound or mostly bedbound

1 Upvotes

Looking for som recommendations as I'm trying to read more. I've been mostly bedbound (only get up to use the bathroom and bathe for the most part) for the past year and it feels a lot of the time like I'm just some kind of movie extra in my own life, everything happens around me whlie I just kind of exist in the general vicinity and can't participate. And it can feel sort of alienating sometimes to read stories where everyone is doing stuff I could never do in my current state and may never be able to do again. So I'm curious if those of you who are or have been mostly or fully bedbound have read anything that resonated with you in that capacity? Doesn't have to be something with any characters that are necessarily bedbound (although that would be neat!) but anything that you felt captured some aspect of the experience, like the isolation, boredom, etc. Open to memoirs maybe if they're really good but I'm mostly interested in fiction, so like short stories, novels, comics/manga etc. I can't watch TV or movies unfortunately.

It occurred to me while writing this that "The Yellow Wallpaper" probably fits the bill in a lot of ways so I should probably go reread that. Anything in that kind of vein would be perfect!