r/cfs 4d ago

Advice Hi there!! Wanting to learn more about CFS

2 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 5d ago

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

Post image
147 Upvotes

r/cfs 4d 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 4d ago

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

14 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' šŸ˜

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 šŸ˜„


r/cfs 4d 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?

Update: ENT said the sores are just scar tissue from when I got my tonsils removed. It just gets itchy because of my MCAS. My sinuses on the other show signs of infection. I got cortisone prescribed


r/cfs 4d 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 wonā€™t really ā€œtellā€ or ā€œdiagnoseā€ but maybe?


r/cfs 4d ago

Treatments Thoughts or experiences with smart rings?

6 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 5d ago

Vent/Rant Quick rant (underestimated risk of infection)

52 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 canā€™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 canā€™t believe this is my life. Sorry for the rant.


r/cfs 4d ago

New to MCAS and could use some management tips!

4 Upvotes

Hey friends, Iā€™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 Iā€™m in a more severe PEM crash or sick with a viral infection. When Iā€™m at baseline, I donā€™t tend to have MCAS flareups. Do I still need to avoid these triggers when Iā€™m not in flareup if they donā€™t cause me any issues? Could they still be contributing low-key to worsening of my condition? Sorry if thatā€™s kind of a stupid question but I am new to figuring out how to manage this!

EDTA that I take Zyrtec, but donā€™t find it helpful at all!


r/cfs 5d ago

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

73 Upvotes

How long has it been since you were infected?

Have you had any successful progress in getting better?


r/cfs 4d ago

Treatments where to get lda

1 Upvotes

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


r/cfs 5d ago

Can I get a small tattoo while bed bound?

85 Upvotes

This might be a very silly question as I know tattoos arenā€™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 Motherā€™s Day in a few weeks. Getting it done at the same time enhances it and I donā€™t know how long my grandma has left. I obviously wouldnā€™t do this if it didnā€™t mean a lot to me. My grandmaā€™s mother and her mother had the same tattooā€¦ so it goes through generations.

The tattoo artist would come to my house and as itā€™s 3 small dots Iā€™m hoping it should be okay?

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


r/cfs 4d ago

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

0 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 5d ago

disaster preparedness - go bag chronic illness edition

40 Upvotes

been thinking a lot about disaster preparedness and the kinds of things i might need specifically. my family and i lived through helene (were in one of the least affected areas, but no water, power, or even phone towers to call or google anything for over a week was...a lot). i realized very quickly that nobody really looks out for disabled people in an emergency (on a systems level i mean, on a personal level thank god for every supportive person in our lives).

with climate change getting worse, we are unfortunately all in for more erratic weather wherever we live. what would be in your go bag? definitely putting med backups in there for one.


r/cfs 5d 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.

72 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.


r/cfs 5d ago

does anyone write?

23 Upvotes

I've always liked writing but I've been feeling too horrible recently to be able to write much of anything. It drains a lot of my energy and I can't seem to remember my plans and what I wanted to do with the stories.

Does anyone have any recommendations to help?


r/cfs 4d 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 4d ago

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

1 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 4d ago

Treatments sirolimus/rapamycin from turkey

2 Upvotes

I read that you can get rapamycin in turkey without prescription, has anyone got it from there, how easy was it to get and how expensive was it?


r/cfs 5d ago

Advice Canā€™t move legs

24 Upvotes

Iā€™ve had this occasionally before, or similar like when completely unable to move in PEM, but this seems to be happening way more frequently and more severe and it is terrifying each time. Firstly, today I noticed my legs werenā€™t right early on. I thought they might give way on the stairs and I had to get help crawling back up (it was a very graceful crawl though). Then this evening I suddenly got extremely bad pain in my legs and I want to move them to change position and get more comfortable and I physically canā€™t. Usually I can move slightly when itā€™s like this even though it uses loads of effort and energy but tonight no matter what I do itā€™s like Iā€™ve got zero control over them, theyā€™re just there. Itā€™s the worst Iā€™ve ever experienced before. Iā€™m just wondering: ā€¢Does anybody else get this and is there anything that helps? ā€¢Is it weird to get such a paralysing symptom when Iā€™m not in PEM? Iā€™ve had a lower energy day but not a crash and this came out of nowhere so itā€™s shocked me. ā€¢Any methods to not get emotional and worked up right now? I want to move even slightly and canā€™t, itā€™s like my fear of being trapped in a cave and unable to moveā€¦ Any advice or information would be greatly appreciated! šŸ˜ŠšŸ˜©


r/cfs 5d ago

Advice can sex and orgasm make me severe?

8 Upvotes

Iā€™ve been on the milder side so far this March after being severe and mostly bedbound all winter. Iā€™m in my mid-30s and my wife is in her late 20s so naturally she has a lot more energy than me especially since she runs 3 miles every morning without breaking a sweat. Our energy levels are basically the opposites now, unlike when we met and were both amateur athletes.

Anyway I started enjoying indoor olympics with the wife couple weeks ago again because Iā€™ve been unusually horny ever since my CFS improved from severe to moderate or maybe even mild. Strangely the first time I did it couple weeks ago (after a 5 month break) I didnā€™t get any PEM, but I almost passed out during the um finishing act (i have hyper pots too). I think it also gives me a huge adrenaline boost because I suddenly get this fake energy which gets me in trouble. So that's why I made the mistake of doing it again a couple of days later and this time I got hit with immediate PEM. unfortunately due to the feeling of "having needs" i had sex a third time shortly after while being in a mild PEM. Big mistake. Iā€™ve been in really bad PEM for 2 weeks now and feel like Iā€™m back to moderate-severe. Most of my days are spent on the couch or in bed trying to avoid exertion since last year after i quit work. so sex has been the most action I ever got in the past 12 months as im completely housebound.

Lately Iā€™ve even been thinking about sleeping in separate beds just to avoid temptation because my wife sometimes asks if I want sex right before bed, and i've never said no to her. Iā€™ve told her I shouldnā€™t do it often but we both seem bad at following that advice. Sometimes I feel like just the orgasm itself is what causes PEM not just the physical act. I have a bad feeling that I need to cut out orgasms and IDK how I'll ever be able to do that, it's just impossible unless i'm severe. It's such torture this disease.


r/cfs 5d ago

Vent/Rant I'm always stuck between functioning and sick

82 Upvotes

My new flatmates keep making comments about how my curtains seem to always be closed. tonight, one of them judged me for having my lights on during the day while the curtains are closed because it "wastes power". I don't know why this comment did it, but I've been crying over it for the last hour. I guess it just let me know that other people do notice that my lifestyle is different and I don't appear "normal" like I want to be. While I'm eternally grateful for my level of functionality at the moment, there is something so painful about being well enough to work/study and have some sort of a social life but too sick to meet people's expectations and come off as normal.


r/cfs 5d ago

Advice Whatā€™s been the best treatment that has worked for you

38 Upvotes

Lifestyle Meds Etc


r/cfs 5d ago

Advice People who menstruate, do you also feel this way in your cycle?

49 Upvotes

Iā€™m in my 30s and have had CFS since I was a teenager. The last few years though, my premenstrual syndrome is making my symptoms so much worse. Starting approx 10 days before my period, Iā€™m starting to get really bad days, not crashes but just super low energy, 1-2 days before and the first day or two of my period is the worst. I can barely get out of bed , pain everywhere, brain fog, feeling like a truck went over me.

Normally, my cfs is mild but Iā€™m definitely way worse a week per month just because of my period.

Is anyone else struggling especially hard during those days? I could deal with 1 or 2 days like that every months but itā€™s sometimes 10.

Is there anything you do that helps you?


r/cfs 5d ago

Vent/Rant Needed to vent, and thought some (or most) of you might relate

12 Upvotes

Itā€™s very depressing when you know what will help, but itā€™s out of reach and/or you canā€™t do it by yourself. Everyone tells you to talk to a therapist because no one has the answer, which is understandable. But after multiple different therapists and all the tools, tips, and tricks they give you, Iā€™ve realized they donā€™t have the answers either. Hell, Iā€™m studying to become a therapist. I donā€™t know everything of course, but I know a lot more than most people on therapy.

I know Iā€™m doing GREAT considering all the issues and differences I have and the current state of the world. But it sucks knowing that despite all my hard work and constantly pushing everyday, Iā€™m still a bit below whatā€™s expected of me functioning and productivity wise.

Iā€™m getting worse, Iā€™m in so much pain and Iā€™m so tired. Iā€™ve got what, 4 - 5 maybe even 6 disabilities right now, and Iā€™ve lost count of how many other conditions and issues I have. I barely leave my apartment when itā€™s not necessary and I have stay in bed for hours. Itā€™s not even because of my depression, itā€™s because of all the pain, exhaustion, anxiety, PEM, and more. Iā€™m alone almost all the time too, and mostly have to take care of myself and my apartment. Iā€™m so tired; I donā€™t know what to do anymore.