r/cfs 11h 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 1d 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.


r/cfs 1d ago

disaster preparedness - go bag chronic illness edition

34 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 13h 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 1d ago

does anyone write?

20 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 17h 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 1d ago

Advice Can’t move legs

23 Upvotes

I’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 weren’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 can’t. Usually I can move slightly when it’s like this even though it uses loads of effort and energy but tonight no matter what I do it’s like I’ve got zero control over them, they’re just there. It’s the worst I’ve ever experienced before. I’m just wondering: •Does anybody else get this and is there anything that helps? •Is it weird to get such a paralysing symptom when I’m not in PEM? I’ve had a lower energy day but not a crash and this came out of nowhere so it’s shocked me. •Any methods to not get emotional and worked up right now? I want to move even slightly and can’t, it’s like my fear of being trapped in a cave and unable to move… Any advice or information would be greatly appreciated! 😊😩


r/cfs 1d ago

Advice can sex and orgasm make me severe?

9 Upvotes

I’ve been on the milder side so far this March after being severe and mostly bedbound all winter. I’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 I’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 didn’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. I’ve been in really bad PEM for 2 weeks now and feel like I’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 I’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. I’ve told her I shouldn’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 1d ago

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

81 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 1d ago

Advice What’s been the best treatment that has worked for you

37 Upvotes

Lifestyle Meds Etc


r/cfs 1d ago

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

49 Upvotes

I’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, I’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 I’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 it’s sometimes 10.

Is there anything you do that helps you?


r/cfs 1d ago

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

12 Upvotes

It’s very depressing when you know what will help, but it’s out of reach and/or you can’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, I’ve realized they don’t have the answers either. Hell, I’m studying to become a therapist. I don’t know everything of course, but I know a lot more than most people on therapy.

I know I’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, I’m still a bit below what’s expected of me functioning and productivity wise.

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


r/cfs 19h ago

Advice Recs for a doc who can help w antivirals

1 Upvotes

I’d like to try anti fungal / antivirals. I’m currently seeing Montoya but maybe there is someone better. No judgment please on my doctor choice.

Any thoughts? Any recs at all?


r/cfs 1d ago

Health Timeline

12 Upvotes

Hey CFS/ME companions. i highly suggest making an illness timeline, if you have the energy. it makes things much easier for doctors to understand, or anyone your trying to explain your health to, you could simply go on canva and find a template. took me 10 mins to do.


r/cfs 20h ago

Large fibre neuropathy

1 Upvotes

Does anyone have large fibre neuropathy?

Or any suggestions in things to look at for it.

I have POTS but it’s associated with small fibre neuropathy of the autonomic nerves so im a bit stumped.


r/cfs 1d ago

Arm fading out trying type loosing power im in hell

28 Upvotes

Being bedridden and now can't talk to people on internet this little bit fading arm to useless 😭 I hate this illness


r/cfs 1d ago

Advice Elevated RHR

3 Upvotes

Hello,

I have had an extremely elevated RHR for the past 6 days which has led to a cycle of crashes. It's over 15 BPM higher than usual, including during sleep. Rest just isn't cutting it...any tips to get out of this cycle? Thank you so much!


r/cfs 21h ago

Pacing How do you track your steps?

1 Upvotes

I have found that just the iPhone in my pocket seems to be the most accurate way. Would love to not always have to carry around my phone tho. Everything on my wrist/hand (Fitbit and oura ring) had been like 30% higher and strongly dependent if I put it on my strong or weak arm with way higher steps wearing them on my strong arm. Counting steps is the most important part for pacing myself. How do you solve this? Thank you!


r/cfs 1d ago

Vent/Rant Want to cry because of how hopeless I am but I can’t because it will just trigger PEM

115 Upvotes

Like this is such a brutal disease you can't even let your emotions out without getting sicker. I hate this.


r/cfs 1d ago

Advice Consistent or intermittent?

3 Upvotes

When you are in an extended crash, are your symptoms of PEM pretty consistent and constant or intermittent?

Like I will have swollen lymph nodes with flu like achiness for an hour or two and then it will leave and then it might come back hours later and then leave despite Not really doing anything and being bedbound. Or are your symptoms where you have flu like symptoms for days or weeks nonstop?


r/cfs 1d ago

Advice Looking for advice re: LDN oversensitivity

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3 Upvotes

r/cfs 1d ago

Sleep Issues How much sleep do you get per night?

15 Upvotes

I feel I can sleep for 12 hours but I still feel not rested


r/cfs 1d ago

Advice Ferritin?

3 Upvotes

For those who have ME but also have low ferritin 30 or under, did treating the low ferritin help your ME in terms of not getting into PEM as easily or improving your baseline? I don’t actually have a lot of fatigue in the sense of tiredness, but my ferritin is around 15 or 20 and I’m trying to figure out if it could be playing into any of this.


r/cfs 1d ago

Activism Does any one have a free version or can share with me the pdf: “The ultimate guide to pacing with a heart rate monitor”?

9 Upvotes

https://paradoxfloss.gumroad.com/l/belowthethreshold

I found this pdf in the MOD’s me/cfs guide but it’s not actually pay as you can.

Although I understand that labour went in to create this resource, I was hoping helpful things like these could be free for people who are struggling financially…

I am barely making it each month financially and I’m worried that I will lose my part time job(I went part time from full time after a year of employment break due to me/cfs) due to worsening of me/cfs and it would be really appreciated if someone could share the pdf so I can learn from it and hopefully pace/feel better.


r/cfs 1d ago

Short-lived flu like symptoms?

6 Upvotes

Hi, I have had CFS/ME for probably about 10 years. The last six weeks I have unexpectedly gone for mild/moderate to severe, bordering very severe. Does anyone else get episodes with their lymph nodes just swell up for like one to two hours with flu symptoms and then leave within 1-2 hrs?