Does anyone here have CCI? Did you get any sort of therapy or surgery for it? Did it help?

My condition is “mild” and I’m not currently bed bound but have had concerning symptoms that started seemingly around September. I’ve been dealing with a really weird and sudden new symptom where I need to take a 26-30 minute nap every day, no exceptions at all, even if I already get 10-12 hours of sleep at night. If I don’t nap then by 4-6 pm I’m hit with sleepiness, which when I was healthy I could fight and have energy to stay awake the evening. But now if it happens, I start shaking, I get dizzy, my breathing gets slow, gets very hard to concentrate and I need to immediately go lay down in bed and shut my brain off.

I’m wondering however if it’s an overstimulation thing because I don’t actually fall asleep if I need to do an emergency nap but I feel my body start to regulate a bit. And sometimes I even have to get up to sit on the couch to get tired again so I can actually sleep (my bed time normally is 9-10 pm). I also weirdly feel not refreshed after this happens because I’ll be sleeping for 15 hours at this point which is way too long for me.

Today of course in particular I’m on day 1 of my period and I didn’t take my usual nap and now I’m laying in bed but can’t actually sleep yet

I have seen about a hundred patients over the past two decades who have chronic fatigue, but instead of the more common mitochondrial origin, they actually had CCI, which we successfully treated. To help patients try to find if this could be the case, here's a quick quiz: https://centenoschultz.com/cci-quiz/

I've been smoking weed daily for around two years now. I only discovered I have CFS a few months ago (had it the majority of my life). I can get so much done when I smoke. It obviously helps with my chronic pain, but I've noticed that it also helps with my fatigue. I had a sudden crash and could barely get a single word out. After a bit of resting, I ended up smoking a bit. It felt like life has been shocked back into me. I could easily talk and I was walking normally.

It's usually not such a severe difference, but I still get seemingly boosts in energy after smoking. I've realized that it's not very healthy for me to be using this random energy when my body already decided I need to rest, so I haven't been doing so as often recently. I fear it puts me into energy debt and increases my risk of PEM.

I don't want to do it. I have bad OCD when it comes to cars and airplanes. I have bad social anxiety. I have trauma around airplanes and airports. The city, neighborhood, and house I grew up in hold a lot of trauma for me (CPTSD). My brother, who abused me growing up, still lives there.

My grandma passed a few months ago. My parents have been going through her house so they put it on the market. I have to fly up to go through their stuff and decide what I want to keep. I know my dad is then going to ask me to help him with some of the physical labor. I also have to go up to visit my grandpa, who is 94 and has dementia.

Last time I went up, my grandma died before I could see her. I promised her I'd see her one last time. I didn't make it. My uncle says he's going to fly up as well when I do so we can all hang out together. I don't want to. I know him and my mom will want to do activities. We went to the fucking aquarium two days after grandma passed. I had PEM lasting months afterwards. My adrenaline allowed me to do a lot of things with them, but the debt it put me in was not worth it. I don't want to go and intentionally put myself into months of PEM. I'm so fucking terrified, but I know I have to. I have so much regret around my grandma. I don't want to feel that way about my grandpa.

I'm just really scared. I said I'd fly up in a month and every day since I've been panicking. I keep finding myself near tears.

My parents have been struggling immensely since I have become bedbound from mild/moderate this July, how are your parents doing? I just turned 27 and I think they are having a harder time to accept this than myself.

Cross-posting from r/disability bc I’m not sure people will even comment/see my post there.

I just came back from the doctor’s office earlier today with devastating news. I am headed for both a Fibromyalgia and Chronic Fatigue Syndrome diagnosis, and I am absolutely gutted. I have been suffering from extreme fatigue, PEM, and joint pain since I got sick with Covid in September of last year. Everyone thought it was Long Covid, but my symptoms have not improved with that protocol at all. I am only 23 years old, I love showing horses, skiing, scuba diving. I want to be a scientist. There were things in my life that I had planned. To say that I am heartbroken, angry, despondent, that would be an understatement. I am struggling to cope right now as I type this.

My family has never been one to comprehend that sickness can be permanent at any age. They’ve always been “fixers”. Hell, they’ve always struggled with my ADHD and have been struggling with my recent Autism diagnosis. My mom, for as supportive as she is, doesn’t seem to get that these new diagnoses are chronic, debilitating conditions that can’t “just be fixed”. Even as I’m writing this she’s telling me to Google something about liver function. Okay, sure, something to look into. That’s not helpful to me right now!

My doctor has already told me to stop competing, stop skiing, etc, for the foreseeable future. I grew up on a horse farm. Riding horses is a huge part of my life. I’ve only recently been able to compete due to my challenges with my Autism. I was finally getting back to what I wanted to do.

And now I’m sick. I’m sick, and all my biggest support system wants to do is tell me that “we’ll get this managed and you’ll still be able to do whatever you want.” I can barely get through the week (not counting the weekend, mind you!) and I am in pain all the time. Maybe there are ways to “manage” it, but as far as I know, managing means limiting stress. The rest of my family is even worse with this type of attitude, btw. They won’t be able to help me with these emotions either. The only person who I can talk to about all of this without all of the “fixing” is my therapist, and I can only see her once a week.

Is my family in denial? Is this toxic positivity? All I want to do is mourn what I am likely to lose and I feel like everyone around me is constantly trying to make me be delusional about all of this. Or am I the one who is delusional?? I don’t know anymore. I know they are trying to be supportive and helpful, but I feel like I’m not being given any room to grieve or be realistic.

Anyways, sorry about the rambling. I appreciate if you’ve read this far. Can someone give me something to hope for that doesn’t feel crazy?

And any advice to deal with my feelings about this would be so great.

TL;DR: My support system is riddled with toxic positivity and denial about my diagnoses, and it is making the grieving process very difficult for me.

https://xandrolab.com/lpc-neuro/

This is the only option I can find but there’s lots of emerging research on both which looks promising. Fish itself gives me bad headaches/migraines so I’d rather supplement

Have you found anything that helps you to really focus and concentrate onto something ? Can tolerate coffein etc. cuz my blood flow cramps up

I've been dealing with migraines for a while now, and while asking for advice on how to deal with migraines after exercise, I was pointed towards this sub.

I've never been diagnosed with CFS. But it is true that whenever I exercise, the next day is hard. I have trouble getting out of bed, my body feels heavier, I'll usually wake up with a migraine if I didn't already go to bed with one...

How "normal" is this? If I go swimming in the morning, I'll have trouble even doing some light reading in the evening, and will have to go to sleep earlier than normal. Maybe this is just a migraine problem, but I'm curious.

I’m kinda new to learning about my illness. The month of October was a huge reality check for me, as I spent the entire month almost completely bedbound while resting through PEM.

For about 2 weeks now, I’ve felt like I’m reaching that point again. I have had small crashes (lasting 24-48 hours at a time) since then, but they haven’t been as horribly debilitating as it was in October.

Yesterday, it’s like everything hit. I started feeling overall just very unwell, my joints were hurting, my muscles felt weaker, my shortness of breath got worse, and my insomnia took over my sleep. I finally fell asleep after trying for hours and hours, but I woke up and still felt like shit.

———

I do not want to be like this again. My baseline is being mostly housebound, completely unable to do anything physically taxing. I usually spend my days trying to rest, but I am sitting upright and at my PC. There are multiple times throughout the day where I have to lay in bed and just let my body breathe because it feels like so much weight is crashing down on me.

I do not want to have to give up my favorite hobby of gaming since it is the only thing I feel that I can manage anymore, but I also do not want to lower my baseline. Is there a way I can manage pacing and engaging with my hobby? Or if I need to stay in bed due to my limitations, maybe I can find a way to enjoy my hobby from my bed? I don’t know what I’m really asking here. Just seeking someone who can offer advice or comfort.

———

TLDR: My baseline is mostly housebound. I had a big crash during the entire month of October where I was mostly bedbound and it was absolutely miserable. I thought that pacing via being at my PC, sitting upright, and engaging in the one hobby I can manage currently (gaming) would be enough. But turns out I am falling into another big crash again. Is there any way that I can pace but keep my one hobby that is left and saving my sanity?

It's too hard to explain things when I have brain fog, and even harder to explain what brain fog is, but "brain injury" seems to be universally understood. That wouldn't be a total lie, would it? I'm trying to accommodate myself and make life easier and less stressful.

Hello! In short, Ive got a question. I have weird fatigue/tiredness/crash-symptoms since a cold end of November. I noticed some patterns by now - laying down, working/reading/... in bed, all is fine all day. A bit of activity (preparing food, 10min slow walk etc) doesnt change that. BUT for a very slow jog for 5min (I ran a half marathon before...), twice, and a 2h socializing event, I noticed the same thing: first all fine (slowly jogging, socializing), but after ~2h (even when laying dowm after the slow jog; during socializing), a sick-ish feeling comes on (like a mini flu) and I HAVE to lie down, alone. The bad feeling does not change for maybe an hour; then I start to recover and after 2-3h in total after lieing down Im fine again. Also, one time during this "crash", my flatmate drilled in their wall, and I was shocked by HOW BAD that felt. Its hard to describe, but I almost jumped to my headphones to at least buffer against the noise. Im usually not senitive to noise. I also believe I have mild POTS - high heart rate standing, but not laying, increasing "energetic emptiness" when standing or sitting for longer times, which does not really happen when I put my legs up while sitting eg. Neurologically, I dont experience heavy brain fog in general, but yesterday it struck me that I had forgotten a VERY normal/simple word which I had to google after MINUTES of actually concentrating on finding it, never had that before (the word for heart attack in my native language, which is all over TV shows, in some phrases, in the news etc, in other words a word one just KNOWS); and the day before a word like "test" came out like "tesht", which also never happened before and was just odd, but of course also concerning. (Have an MRI coming up in a few weeks)

Im 25m and had no known diseases before (except depression from time to time). I dont have clear other symptoms - some fluctuating ones but the energy related things dominate over all else by a large margin.

...do you think it sounds like early/mild cfs, or unlikely, in your opinion and experience?

Thanks for reading and replying, if you decide to do so. Id be really grateful, as Im quite desperate by now (although I know how much better Im - yet - off compared to many here, and Im sorry for that/feel a bit bad for asking about such a "mild" case here, fingers crossed that doesnt change with the MRI...)

Currently using a travel pillow to help support my head and neck when sitting in bed. I’m finding it’s not giving me enough support anymore. My head just feels too heavy and the travel pillow isn’t high enough at the back. I would love something like a full neck brace but I don’t like anything around the front of my neck. What do you all use to support your head and neck when sitting in bed? I’m in the UK so something I can get here. Thank you for your help!

I was diagnosed with Flu A today and I am panicking. I have been dealing with ME/CFS/“blanket dysautonomia” per my doc since a horrific RSV infection in 2022. Early 2023 was debilitating. I have felt mostly manageable through medications.

I am obese and have lost 85 pounds so far. I have PTSD/OCD of which I am prescribed 75mg Effexor daily and 0.5 klonopin as needed.

I am also on topamax and Zepbound for weight management after losing 60 pounds on my own.

I take vitamin d, turmeric, iron, multivitamins, Xlear, honey throat spray, and wear a n95 - idk, I feel like I really try my best, and I feel so anxious and so defeated right now.

I am sorry for rambling. I had a really horrific 2024 being my dad’s caregiver. And I just throught I was doing good.

What can I do in the acute phase?

First severe crash. 100% bedbound. Heart rate won’t stabilize for three days straight; heart constantly climbs up and down from 65-80, never settles…..resting rate is normally low 50s; do other people experience this?

Hello!

Does anyone here have experience taking higher doses of Coq10 during PEM?
Do you increase your Coq10 dosage during a crash?

I'm looking for dosage recommendations.

I've seen that people on this subreddit taking anywhere between 100 and 4000 (!) mg, so I'm a bit unsure where to start.

Thank you!

So my brain is being very wonky past couple days. When I close my eyes I almost feel dead. There is no one home. I have to open my eyes to remind myself I’m alive. I’m hoping this is intense DPDR, because if not I think my brain is poop fried. I can still think and cognitively function, but laying with my eyes closed is extremely disorienting and makes it hard to rest, fck this illness. Idk how else to explain it besides that. I leave my body the second I close my eyes, makes me nauseous

There were 4 main points that were abnormal:

1. Lack of protective and muconutritive microbiotics (bacteroides spp; Bifidobacterium spp; Lactobacillus spp;H2O2 Lactobacillus; Faecalbacterium p.; Akkermansia m.) plus Enterococcus spp.
2. pH7.5 so too alkaline
3. Leaky gut
4. Too much fat

Everything else was fine. So who has had similar results?

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I honestly feel like my POTS doctor doesn’t understand CFS/ME. From what my body’s telling me and from what my chronically ill friends say and people on here, you have to kind of ride out severe PEM crashes and not push yourself. I’m literally bedridden rn the fatigue is so severe. I tried ignoring it and it got worse. She wants me to just keep walking around and acting like everything is normal. I can’t do that. I get up to go to the bathroom and get food and that’s about it. It was also frustrating the way she assumed I wasn’t doing anything to manage my POTS? She was like I want you to take care of this by eating a lot of salt and wearing compression. GIRL IM ALREADY DOING THAT!!! I’ve been seeing you for a year!😐😐😐 I suggested Corlanor and she agreed to prescribe it if insurance approved it, but I had to come up with that idea myself. She didn’t even think of it. 😐 I’ve tried all four major POTS medications and she literally was like okay I’m out of ideas.

I have had 2 good weeks after i started Valtrex and Celebrex 4 weeks ago. i take both 750mg Valtrex and 200mg Celebrex both twice a day. This was after someone posted a long covid study here and so I asked my doctor about it and he gladly prescribed it. i also am on Low Dose Naltrexone which i started 9 months ago. I’m currently at 3.5mg of LDN and it took care of all my aches and pains, although it was quite terrible at the beginning, and it was a lot of work titrating up from 0.1mg.

Anyways for the past two weeks i’ve felt great. i still have POTS and my pulse explodes when i get up, but my fatigue and physical weakness is better. II control the pots with a LOT of electrolytes, rest and ivabradine. Also my physical exertion envelope and baseline is improving. It takes a lot more than usual to get PEM, but to be fair it’s only been two weeks.

I’m not sure what to make of it, i want to be optimistic but I know better with this disease. Yesterday I had to leave the house for an hour for an appointment and i was tired when I got home. but no PEM so far knock on wood. I kind of feel okay and not my terrible mess of flu like symptoms. I feel normal as long as I don’t over do it. i managed to take a shower (i use a shower stool) but again no PEM like i usually get.

There are somethings that the antivirals have not fixed. First it’s the vivid dreams and nightmares. Second is I still wake up feeling unrefreshed and sick. but by lunch time i start feeling better and after lunch i almost feel normal.

I don’t know if this is the antivirals or the LDN, or the combination of them both. I’m also on Amitriptyline which I’m trying to get off. This could be placebo but then how come I didn’t get placebo from countless other drugs I tried? I would also be curious as to why an antiviral is helping me so much, and if this is a virus, I would suspect COVID given how this all started 1 year after the pandemic.

Again CFS is a very complex syndrome and every patient is different. here are some links on antiviral studies for CFS:

https://www.drmyhill.co.uk/wiki/Valacyclovir_in_the_treatment_of_post_viral_fatigue_syndrome

https://www.globenewswire.com/news-release/2024/11/18/2982814/0/en/Dogwood-Therapeutics-Inc-Announces-Low-Dose-IMC-2-Treatment-Reduces-Long-COVID-Related-Fatigue-and-Sleep-Disturbance-in-an-Investigator-Initiated-Study.html

So idk if anyone remembers my post but I’ve only just been referred to the CFS service so I’ve only got half a clue what’s going on. I’m also mild/moderate for reference

I know PEM is characterised by a refractory period (like 24-72 hours after the exertion) but are you ever doing a relatively low impact task and all at once tiredness hits you like a brick mid task?

I am lucky that I can walk around, but rather than PEM, I just get ‘go to sleep, need a nap immediately’ exhausted in the middle of it. And then PEM after. Or the example that has me in bed rn was a set of test papers for homework. Lights are soft, I have a comfy seat so I don’t get tired. Some mental exertion but definitely with frequent breaks and not high impact at all. My test papers is on my desk and I’m so tired I can’t even guess answers.

It’s not narcolepsy either, so what is it? :0

So I (M,27) am still in the process of getting a diagnosis and figuring out what I have. I've been sick since 2 months and highly believe it's Long Covid even though I would've been asymptomatic to the original infection.

I'm almost certain I have POTS (did a home test which was significant) and wonder whether or not I have ME/CFS due to a debilitating fatigue that never goes away and made me housebound since 1 month, as well as muscle and joints pain sometimes, headaches, GI issues, etc.

One thing I noticed is that when I am able to go for a short walk (1 or 2km max), my HR while lying down seems to be lower than before the walk. The same goes for my "stress level" tracked by my Garmin watch. For exemple, today I was feeling more tired than usual and my HR lying down was around 70/75 bpm when it is usually more between 55 and 70. After a bit of rest I decided to go for a 1 km walk, which was probably too much because I was absolutely wired after that. However, my HR lying down and my "stress level" got down.

Therefore, I wonder if some of you also noticed it as I don't know how to interpret that signal. This lowering of HR and "stress level" seems positive to me, but I'm afraid I'm doing too much and risking to lower by baseline. I'm having troubles to identify if I have PEM or not, or even if I'm in a rolling PEM.

Thanks for the help ! And sorry for my English if there are grammatical mistakes, I'm French so English isn't my first language.

I honestly just want to kill myself right now. I was told I wasn't sick enough to warrant 24 hour care because I won't die without it. Even though I literally would. I might have my mom to take care of me, but it's not enough. My quality of life is zero. I might as well be dying. I might as well already be dead.

And this is the denial of the objection to my original denial. that means i can't do anything about it anymore.

i have no income, no friends, no self reliance, no joy. i have nothing. being severe is torture. and knowing it can get worse from here is even worse. if i make another application and it takes as long as this one im going to get even worse.i dont have another year to sit arounf and get eorse.

this disease has taken everything and once i think its already taken it all it finds a new way to take from me.

I know it's not easy, especially for people in the severe or very severe stages, but in a way, I'm referring especially to them (us). One way or another, this illness forces us into a truly peculiar way of life, and I suppose it's natural to start seeing the world and life from a very different perspective than most people.

Through all of this, have you found, or are you able to find, something positive? My question includes both the more 'materialistic' aspects and the deeply philosophical ones.

Of course, I know that the answer can vary greatly depending on the severity of one's condition. For example, until a few months ago, I considered myself, in some ways, privileged, because I had much more time than a 'normal' person to dedicate to reading. I've worsened to the point where continuing this passion in a structured way is impossible. Maybe I'm asking this question now because I can no longer find anything positive.

So, what about you?

P.S.: I completely understand more pessimistic (or, as some might say, realistic) views, like the idea that an illness like this simply can't have a positive side. But I'm curious to see the various opinions.

i guess i developed autoimmune pancreatitis as a comorbidity of my ME-CFS (https://www.medrxiv.org/content/10.1101/2024.12.30.24319800v1) and my gastroenterologist wants me on what they call a small dose of cortisone for autoimmune pancreatitis (for a while, not indefinitely). i know of the hypersensitivity of PwME to glucocorticoids (https://me-pedia.org/wiki/Glucocorticoid) and i told them about it. they don't seem to know much about ME-CFS but they are open and responsive to studies i link them.

my question now is what else do i need to take into account, is there something i am missing? and if someone has personal experience with this situation i'd be interested in hearing about it!

I'm in so much fucking pain. I was doing ok (mostly bedbound but able to go to the bathroom and sit up for 5-10 mins), then suddenly everything flared. I can barely type. I'm limiting water intake so I don't have to go to the toilet so much, and each bathroom trip feels harder and flares me more.

I'm panicking.

I do have a fibro dx but honestly the fibro folks don't get it. They can push through in a way that we just can't.

I am taking the max of co-codamol 30/500 and it's not even touching the pain.

Any encouragement, hope, tips, solidarity etc needed 🙏

I'm 23 F, been dealing with post viral fatigue from reactivated EBV for 5 months now. Some months better than others. Some days better than others. Im definitely improving , 5 months ago I wasn't able to stand up properly but the recovery process is just so not linear. One day I'm fine the next im bedbound.

However , I was able to go to Disneyland for 3 days doing 20,000 steps a day and felt relatively okay just the normal fatigue and leg pain. Now that I'm home , the tiredness is a lot worse and no energy and quite a bit of brain fog. I don't know if this is PEM or just normal fluctuations in post viral fatigue.

I've only been taking it for a week (3 x 5g/day), so I'm fully aware that the positive effects may soon reverse. However, very few of the many supplements I have tried over the last seven years have not been helpful in any way, even briefly. As such, I was hoping to get advice on which other supplements might be helpful, given that d ribose is (at least temporarily).

I have already tried a few that seem related, but without any long term benefit. Ubiquinol makes me feel slightly off and irritable with a tense head, and with no positive effect. Nicotinamide riboside seems to give me a small boost all around, but I think also slowly gives me insomnia over weeks/months of taking it. I also want to try PQQ, but actually tried it years ago, before having cfs, and don't remember it doing much.

I have also tried many many (afaik) unrelated supplements, most of whuch have done nothing, or have had immediate negative effects; some of which have been amazingly helpful, but at too large a cost (e.g., ashwaganda was completely life changing, and allowed me to be pre-cfs me, but eventually gave me a dysfunctional thyroid so I had to stop).

So any advice on supplements with a related mechanism of action (I suppose anything which targets mitochondrial function?) would be appreciated. Thanks!