I'm just wondering if anyone has been a patient at the NSU clinic. After much deliberation, I finally gave them a call today. I was pleasantly surprised that I could be seen as soon as April (was expecting much longer.) The receptionist emailed me a packet which I need to complete and send in before I can make an appointment. I would love to hear about your experiences. I know there is currently no treatment or cure for CFS but I feel like if I become a patient at least I'll have my foot in the door so that when treatments do become available I'll have access to them.

Struggling with acceptance. Used to be so active, feel like I'm on the tail end of a several year denial/grief process around letting go of my former aspirations, activity level, and that horrible cycle of pushing too far/crashing.

I need a reframe and some acceptance. I have this as part of Long Covid, plus a pre-existing post-viral condition that kicked off after I got Epstein Barr in 2015.
t makes me feel so much despair sometimes to consider that I will never be able to live "full send" again, feel that joy of strength and energy in my body, dancing, exercising, moving, organizing in my community. I am highly ambitious person with so many ideas and its very hard to live slow. Some of the better days give me a taste of that energy again and I am always wondering, what caused it? Did I take just enough B12? sleep the right amount? get good oxygenated air?

I want to be more balanced, and spiritually accepting, but am also struggling with severe poverty, watching so much happen in the world, and my mental illness already makes it difficult for me to accept reality instead of creating my own to live in.

Part of what feels so scary is how people treat disabled folks. Having to ask for more support than I already do, or growing old and needing more support than is deemed acceptable, for an invisible il
lness.
I guess I am asking - does it get better with care? The way my POTS and EDS have? Is there any hope for research to improve the experience of people with ME/CFS?
It might sound strange but I feel like I'm at a crossoads where I can either invest my energy into recovery and getting active again or into acceptance of being bedbound and building other skills to maintain meaning in my life.
Like do I work on exercising again and delete my socials, or further invest in online community? You know, those kinds of choices. I don't know if the latter is totally delusional.

Thank you in advance for any advice or comfort.

I developed my me/cfs from a concussion. (I had a milder version as a kid and now I’m bedbound)

I just read an article - “Pyruvate Dehydrogenase and Tricarboxylic Acid Cycle Enzymes Are Sensitive Targets of Traumatic Brain Injury Induced Metabolic Derangement”

Does anyone have any info on how to treat this?

Thanks

When in a CFS “flare” I get weird internal feelings almost mimicking hypoglycemia? I get flushed cheeks, anxiety, dizzy, fatigued, irritable, excessive hunger, sweaty, and it feels like my body goes into fight or flight. I keep interpreting it as low blood sugar but sometimes it’s after I’ve already eaten a full meal. It’s so damn hard to explain to doctors what it feels like.

By the way I’ve had my sugars tested and they are perfectly normal.

Ugh, the amount of abuse the people in this sub and with this condition face is absolutely ridiculous. It's like everywhere I look involving me/cfs, there is one kind of abuse or another.

Is it possible there are any local support groups, or that anybody might be trying to make any? I'm in a crash right now, but when I am mild, I can get groceries and go shopping and would be glad to help out others nearby. That and I'm pretty good with boring phone calls and paperwork when I can handle sound.

I know there are general location-based mutual aid groups on Facebook, but it just seems like nobody actually gets it unless they have it.

Is there anything like that already?

I do realize the potential for abuse, but in an ideal world, would anyone be interested in something like that?

My young adult child (severe, bedbound for 4 years) asked me to ask you what comfort movies make you smile, laugh or feel happy, hopeful, or calm? They like Blast from the Past as a comfort movie.

Does any have nostalgia moments from past experiences? Since getting more severe. ...

I haven't done anything for years but the more ill I get.... The more i crave it somewhat.

Just asking if anyone has any similar experience.

Mods remove this if it's not allowed

Question in the title.. I saw that Jennifer Brea, the director of the documentary "Unrest" who had severe ME/CFS, had surgery for CCI, and she is now symptom-free... I'm just curious if anyone else has looked more into this.

What paradigm shift have you experienced regarding ME/CFS that has made your life better?

One for me has been to view myself as someone who will always have ME/CFS.

I've been very careful, and even more lucky when it comes to my ME/CFS so before, every time I tried a new treatment, or had a couple good weeks I would start to think, "wow! Maybe I don't have ME/CFS anymore!" Sometimes with an added bonus of "maybe I was faking it all along?" which would inevitably lead me to overdoing it and crashing.

Now, I make an effort to view myself as someone who will always have ME/CFS. Maybe my ME/CFS will go into remission, but like how someone who has survived cancer will always deal with those after effects, I will always need to pace. When I feel good, I can do a bit more, but only a little bit, and always keeping an eye on my energy levels and heart rate. Hopefully at some point I will be able to build up to a "normal" life, but I will still need to pace, even then.

This has helped to cut down on the feelings of guilt for not doing enough, and reduced the amount I crash even further.

He’s coming over for xmas as I haven’t seen him in years. I’m worried about PEM since whenever anyone comes over (even for couple hours) i end up with bad PEM. I’m gonna be lying down on the couch and try and be horizontal as much as possible. But i’m not sure if that will be enough to prevent PEM. Does anyone have any advice? My doctor has prescribed prednisone 20mg for these situations to “prevent a crash” after (he only prescribes 3 tablets per month).

Lou Gehrig's farewell speech after having to retire from baseball because of his ALS diagnosis. Reminds me of how many things I have to be lucky for despite such a raw deal with CFS:

https://youtu.be/3oW1RuGqw7g

Also this one is osbscure but when it comes to pacing there's this line from the movie Gettysburg that always helps me when I know I'm doing too much and it's hard to stop:

"It’s as if tomorrow’s already happened and there’s nothing you can do about it ... knowing it will fail, but you cannot stop it."

I'm specifically looking into strattera (again) but I couldn't find anything in more generic terms on this sub either. So is there some kind of indicator to look out for?

too long, didnt read

This post is about the relationship between chronic inflammation and brain fog, tricyclic antidepressants and chronic fatigue syndrome.

I have been suffering from brain fog and chronic fatigue for unknown reasons since I was 17 years old before the corona pandemic.

However, when I take tricyclic antidepressants, the fatigue disappears all at once, and other symptoms that appeared with the onset of CFS (acne, dry eyes, ADHD-like symptoms) also disappear all at once.

This is my ignorant hypothesis, but I think this is because tricyclic antidepressants are effective against chronic inflammation in the brain.

However, it is really sad that I have familial heart disease, and when I take tricyclic antidepressants, my QT is abnormally long. In other words, I cannot continue taking the medication.

Here are some questions for you all.

① Why do you think tricyclic antidepressants are so effective at reducing my CFS?

② Are there any other ways to replace tricyclic antidepressants? If chronic inflammation in the brain is the cause of my CFS, are there any other effective ways to prevent chronic inflammation in the brain? I thought that this could be improved by treating MCAS, so I tried drugs that are said to be effective against MCAS, but they had almost no effect at all. What drugs are effective against chronic inflammation in the brain?

③Is there any way for me, who is very susceptible to QT prolongation, to continue taking tricyclic antidepressants? Is there an unrealistic method of preventing QT prolongation with some drug or implanting an ICD to prevent sudden death? You may think this is a ridiculous story, but if I don't take tricyclic antidepressants, I can't move from my bed due to brain fog and chronic fatigue, and my days are really empty. Because of this, I spent almost all of my late teens and early twenties in bed. While watching my classmates enjoying romance and sports. In other words, if there is a somewhat unusual way to continue taking tricyclic antidepressants, I am willing to try it. I would like some ideas from a silly me.

This has gotten long, so a partial answer is fine. Recently, it seems that the relationship between chronic inflammation and Toll-like receptors has also been attracting attention. If I could replace the benefits I get from tricyclic antidepressants without using them, I think that would be the most rational way for me. However, even if I take other supplements that are said to be "anti-inflammatory" or MCAS drugs, I don't feel like the inflammation is subsiding, and it's strange that only tricyclic antidepressants can subside the inflammatory symptoms.

Also, to provide some other physical information about me, I have abnormally low cortisol levels, degenerative disc disease, and an allergic constitution. If there are any hints that can lead to treatment even in such fragmentary information, I would like you to point them out mercilessly.

I really want to get out of the swamp of chronic fatigue and brain fog. Thank you for reading this far (I'm typing this sentence with Google Translate, so I apologize if there are any parts that are difficult to understand)

Those of you who experience more fatigue in winter, is there anything that helps you? I *think* winter makes me worse, but this is only my third winter with CFS, so I don't really have enough experience with this to say that it is for sure caused by the seasonal change. However, even when I was healthy I would notice myself getting really tired in winter, so it's probably related.

Might supplementing with Vitamin D help? Getting a bright lamp? Turning the heat up? Moving to Florida probably isn't an option lol. What are everyone's experiences with this?

So I've been stuck in bed for like 8 days now in a crash that is slowly turning around. Have a blanket over my face laying in bed blocking out the light to try and recover faster.

Husband speedily leaves the room every morning without asking if I need food or anything (even though I need breakfast every morning and cant get to the kitchen right now)

Husband comes back to the room 4 hours later to grab something, and immediately "jokingly" calls me a "freak" multiple times because of the blanket on my face. Then as he is walking away I say "hey I need some food". To which he sighs and says "I knew I shouldnt have walked into the room" which really fucking hurt because I havent left the bedroom in 8 days but ok whatever.

He goes and makes me a tv dinner and then brings it up and says "here you go freak" or something along those lines. I finally tell him to stop calling me that because its messed up because I didnt ask for this condition, to which he responds with "why" over and over to every answer I give him so I tell him to leave and give me the food, and he wont let me have it, and says some other stuff I cant remember but acts like I hurt him.

Then finally I shout "go" and he hands me the food and leaves. Now I'm sitting here depressed as hell that this is what I have to go through to get a tv dinner. I had to get this off my chest because I cannot go through another crash because of something this fucking petty.

Thanks for listening. We really should have a day on this subreddit dedicated to "crazy shit people said to me this week" just to be able to see this lunacy more often and to know were not alone cuz this is driving me insane 😭

If I'm in a constant push-crash cycle, and I crash every other day trying to go to the bathroom, I was trying to preemptively rest to not crash going to the bathroom eventually, but my main issue is I'm going over my anaerobic threshold since I have POTS because I'm getting deconditioned. My calf muscle is getting super weak starting to get a Charlie horse feeling walking in it. I haven’t been bedbound for 2 months now. Any advice? Exercises in bed even though I have bad PEM?

Started using the app about 3 months ago and got the armband about 3 days ago. It's not horrible but here are little changes that could make a difference;

• making it easier to charge.

To charge it, you have to take the sensor off the armband and place it into the charger. Having to do this every night then pop it back on in the morning is a bit of a hassle especially when it's not easy to remove it from the armband or charging port. I can imagine this being difficult on really bad days. But the upside is, it doesn't take too long to charge and it lasts all day.

• the light that flashes while it's charging is not great.

Light sensitivity is one of our symptoms and products designed for us should accommodate this need. It would be good to include a way to turn off the flashing light while it's charging. Currently I use the armband to block the light.

• articles in the app use a white background. Again, we're sensitive to light and dark mode would be useful to read the articles without risking overstimulation.

I just wanted to get this out here. Will probably send them an email or something at some point to share as feedback. Overall, it's an helpful app and product, however, these tiny pain points dampen on my experience.

Would love to meet new people in my area :)

Since its hard to keep up a social circle with this shit conditions, I figured asking here 😄

I’ve been currently taking 1000mg x2 a day of oxaloacetate, and have a side effect I haven’t really read online. My heart rate is faster than average and I have random moments it suddenly goes extremely fast for no reason, and I just have to focus on breathing and etc for it to calm down. Sometimes I just have to wait. My optimistic theory was maybe oxaloacetate is giving my body energy and maybe that’s why my heart rate was increasing (I’ve only been on it one week). I really want the supplement to work and dont want to stop (still on it). Anyone have any similar side effect to oxaloacetate (or any supplement), and how did it go? What are your thoughts on me continuing to take it. Thanks :)!?

i forced my self to workout thinking it has benefits but tiredness still the same ,tiredness increases during the exertion but after that by 5 hours it fades away and still tired.

is this considered an evidence that i don't have PEM.

I’ve read through a lot of the FAQs, other information, and posts here. All of which seems to confirm that PEM is a necessary presence with ME/CFS diagnosis.

I’ve been experiencing daily fatigue for over two years now, along with daily headaches and GI issues (mainly bloating) that onset at the same time.

I’ve had extensive bloodwork, imaging, and other testing done. All normal and negative. I’m currently scheduled for an MSLT in two weeks, which from what I’ve found really only checks for narcolepsy. I don’t believe narcolepsy is fitting, so I’m debating cancelling the test.

I’m not sure what other avenues I have, though many people (not medical professionals) have suggested ME/CFS as a potential diagnosis. I just don’t know if that’s fitting either.

Is PEM required for ME/CFS? If I don’t experience PEM, is it safe to rule out ME/CFS?

Thank you in advance.

Post-exertional malaise (PEM) is a delayed worsening of symptoms that occurs after minimal physical or mental activity. The key feature of PEM is that the malaise (extreme fatigue and flulike symptoms) and other symptoms.

if you don't have PEM then you don't have cfs.

should i have experiment and exert myself to see if i have it or no?

if i had exertion what exactly to expect if i have cfs vs if i dont have cfs.

What are some songs that you guys feel like you relate to or have some lyrics you get emotional from?

I personally really like rap and one of my favourites are Metro Boomin. I feel like i relate to a lot of his music, but for other reasons then CFS/ME.

One song he has is «Am i dreaming» - Metro Boomin, ASAP Rocky, Rosiee. Particularly one line from this song hits deep for me. «Got me feeling, like it’s all to much, I feel beaten, but I can’t give up»

Hi team! I thought I’d mention the Sony freestyle projector for those who spend a lot of time horizontal. I’ve had it for 2+ years and it’s been a game changer. It runs between $600-$800 depending on sales and model. It works on the ceiling like a charm! Also, large blank walls! I’ve projected it on a bedding sheet on a clothing rack. It automatically adjusts clearly and with almost any angle.

While electronics are projected to have increases due to the new administration I thought I’d mention this useful tool before it becomes even more expensive. I’m reading televisions are estimated to have a 9% increase. But do your own research.

If you’re able to afford it now, I suggest you invest in it! It’s made being in bed so much easier, and enjoyable, especially on those tougher days.

Keep pacing.

When do you experience noticeable lactate (lactic acid) build up in your muscles in relation to PEM?

(For those not familiar with the lactic acid component of ME/CS, see this https://batemanhornecenter.org/wp-content/uploads/filebase/providers/PEM-L ecture-Slides-ECHO-v4-5_17_2022.pdf or this https://www.youtube.com/watch?v=ioSe6LPVLDM )

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Doctor thinks I have fibromyalgia and not CFS, or ME. But didn't actually decide on a diagnosis. I don't because I don't have pain as the primary symptom plus my problems fit ME ICC much better. I have no idea why he suggested that. People with fibromyalgia can exercise and work, I can't do either, not to mention the neurological problems. Plus he was weirdly fixated on Cymbalta, claiming it helps people with RA and other problems. I don't know about that but I declined because I have never heard of SNRI being useful in genuine ME.

He said his patients with CFS "sleep 16 hours a day and they walk for 5 minutes and have to go sleep, like they can't move". I feel bad for them but I feel like that might be something else

Apparently they can see my old records so that's bad. And fucking terrifying. The last doctor I had really didn't understand what ME is and it led to abuse and neglect from people around me, because they believed I should push through symptoms.

Well I got the bloodwork I needed at least.

I feel like the walls are closing in on me...my parents are getting more aggressive towards me and I don't feel like I have anyone on my side. And I just learned that Dr Hyde died. If it weren't for his brilliant writing and lectures I would have lost all hope. I wanted to write him an email or something and thank him (and maybe ask for doctor recommendation) but now it's too late. I don't know what to do. At this rate I'll never get disability even though I need to because I cant even work 20 hours a week consistently

People who use a continuous heart rate monitor with alarms/alerts for pacing, how do you have your alerts set and what do you do when they go off? What's your rationale or experience that led to doing it that way? I use the Visible app & armband and recently made some changes in my approach that I think are helping, but now I'm curious what other people are doing that I might not have considered.

My current system:

• I left my "exertion" threshold at the level the app calculated for me, which seems kind of arbitrary but is in the ballpark of the 0.6 * (220 - age) formula.
• The app alerts me if I am above that threshold for 3 minutes continously.
• When the alarm goes off, I immediately (or as immediately as I safely can) lie down and close my eyes +/- diaphragmatic breathing until my HR comes down to the low 90s. (My app-calculated Rest zone doesn't quite work for this)
• Once my HR is down enough, I set a 5 minute timer and stay resting until it goes off. This makes my total resting time, from when I first laid down, somewhere in the 6-10 minute range, depending on how long it took my HR to come down.
• When the timer goes off, I go back to doing stuff. Maybe slower than before if I know I was pushing it, or if I've been getting a lot of alarms that day

This is all for ideal circumstances, where I have a safe & clean place to lie down and am not up against a deadline like a waiting Uber that's about to leave. Sometimes things are not ideal and I have to improvise, but this is the general structure I try to follow.

What about you?

Firstly want to say I’m sorry to everyone struggling with this awful illness! Sending you strength and healing wishes.

I was diagnosed with MCAS a few months ago after having strange symptoms for 9 months. I literally “woke up” and was never the same again - horrific daily nausea in the mornings, and weird flu aches, fatigue but not actually needing to “sleep” and weird tingly achy arm discomfort that would wax and wane, and the symptom that never goes is cold painful feet. I thought it was a virus (as that’s how it felt) but it just never went (or it would appear to get better for a few days then come back). Looking back I’ve always had sensitivities but low level that you just ignore, but this changed my world overnight. Tested for Covid, EBV, all reactivated virus’, you name it (spent 1000s on private blood tests only to be told I’m normal) I was sort of hoping it would be EBV as I would have an explanation. So I still don’t know why or how this happened. Really can’t identify a trigger as the last time I had Covid was 2 years ago.

Since starting h1 blockers I have noticed some improvement. I actually thought a few months ago I was on the road to healing when I moved to a hot climate for work I felt pretty good. Then recently after a busy family vacation those horrible achy arms (feels like tingles) has come back again, some nausea or lack of hunger (not as bad as the beginning however!), tender lymph nodes, and just a general feeling of flatness. I can still work (from home), do things for myself but I take my time. I don’t think I’m experiencing any POTS symptoms (only racing heart when I eat which is MCAS related).

I feel like this could present mild ME/CFS? Or the start of it. Although I’m 9 months in now but haven’t seen a decline, more of an “up and down”. This also petrifies me so I’ve been maybe in denial that I don’t want this diagnosis. I can’t answer the question about PEM which I know is the obvious, but maybe I need to start tracking that more to see. I just thought my fatigue was related to MCAS degranulation.

Any experiences or positive advice I would really appreciate it. Thank you all!

My "acivity" was rolling over in bed... 🤣 That is all