r/mecfs

I have just asked my GP (in the UK) to be signed off work fully. I am currently doing 6 hours but am experiencing PEM, fatigue, body aches, brain fog etc. I think I need to be off for a period of time to properly learn how to pace and stabilise before building up work again. However the GP has refused saying the local me/CFS clinic has told them not to as it makes fatigue worse and people don't go back to work. Thoughts where I go from here?

Im wondering if anyone who has this condition (especially moderate-mild) has managed to complete a PhD program, no matter how long it took you. It’s been a dream of mine forever. I did complete my Bachelors with a reduced course load while I was still pretty squarely mild but I’m definitely more on the moderate side now. I may go into more detail about what program I’m interested in and my specific situation in another post or in comments but right now I just wanna hear if anyone’s done it at all? Thank you 💖

SUMMARY: I'm trying 45 grams/day of dark chocolate. Only on day 4, so too soon to be sure about causality; but it may be helping with mood, attention, orthostatic intolerance, and physical appearance.

DETAIL: Every morning, I eat 45 grams of vegan chocolate chips, 69% cacao. I eat no other chocolate.

Though it's too early to be sure that there's a causal link, I've noticed better mood, better attention, better physical stamina (in the sense that there's less orthostatic intolerance), a reduction in the recent flareup of a podgy look in my chest and belly (from inflammation?), and a nicer face (less of the inflammatory puffiness; smaller pores; color seems more even; usual dry patch isn't dry; and the two creases between my eyebrows are much less visible). My appetite for Coca-Cola is much less.

As for my attention: I've been able to watch a movie in chunks of about 20 to 30 minutes. Ever since I got CFS (5 years ago), my norm for movie-watching has been chunks of 3 to 5 minutes, 15 minutes if I'm lucky. (Before CFS, I could turn on Turner Classic Movies and watch three in a row.)

Orthostatic intolerance: I still spend a lot of time lying down—but, when I am sitting up or on my feet, there isn't nearly so much desire to get more horizontal. Just before writing this post, I spent a while washing dishes, and it didn't make me feel sick. Yesterday, I had a long shower—and afterward I kept on with my activities, instead of lying down feeling sick.

Why am I doing this? Until I started this experiment, it had become my norm not to eat much chocolate (I'd go many weeks without). Recently I had some at night, and got the sense that it was keeping me wide awake for many hours, in a way that p.m. coffee and Coke didn't. I looked it up, and read that it might be the theobromine in the chocolate, acting as a stimulant. I also had a feeling that, in the many hours after the chocolate, I was not as PEM-y as I should be after the day's errands. That got me curious about chocolate in CFS; I found "High Cocoa Polyphenol Rich Chocolate May Reduce the Burden of the Symptoms in Chronic Fatigue Syndrome" (https://pmc.ncbi.nlm.nih.gov/articles/PMC3001690/pdf/1475-2891-9-55.pdf).

By the way, the study found that the chocolate was not associated with weight gain, despite the calories in it. The authors hypothesize that the increase in feeling energetic causes a compensatory increase in activity. I suspect that the subjects also, despite being told to maintain their diet, subconsciously made compensatory reductions because of the chocolate.

In case it matters: the chocolate chips are made by Enjoy Life, the Dark variety; the listed ingredients are unsweetened chocolate, cane sugar, cocoa butter; the 45 grams have 210 calories. I eat them in the morning, to keep them from messing up my sleep.

We'll see how it goes.

Anyone else in here with severe ME/CFS who can’t safely access standard medical care due to how sick you are? I’ve had multiple post-viral crises over the last 15 years and my new primary care doctor instantly said she thinks I have a chronic relapsing form of AE but I’m too sick at this point for invasive testing to confirm or for standard treatment options. I am unable to safely attend in person appointments or go to the ER where they don’t understand any of this. Looking for advice on how to get help without wrecking my baseline. I’ll post a brief summary about my history and my current baseline function. Not sure if I’m so sick from so many years of untreated AE or if I have both ME/CFS & AE. Either way I need help. Thank you so much for any guidance.

History:
35yo female, bedbound & housebound with severe “ME/CFS” & POTS/dysautonomia, with a history of unresolved PANS, chronic relapsing progressive neuroinflammation & extreme acute critical episodes of sudden systemic, neuropsychiatric & neurological collapse within 2-8 weeks after viral triggers (HSV2/COVID/Influenza) lasting months, with each resulting in permanent & progressive worsening of baseline function. Core features of acute critical episodes include sudden onset of near-psychosis, flu-like body aches & malaise, severe cognitive impairment, short term memory deficits, awake central apneas (manual breathing), convulsive loss of consciousness with incontinence (possible seizures), episodes of catatonia resembling absence seizures, extreme weakness & fatigue, sleep/wake instability, cyanosis of the lips & nail beds, extreme darkening around eyes, HPA axis collapse including loss of body hair & growth of lanugo hair, fluctuating lethargy, changes in awareness, severe episodes of hypotension (as low as 80/50) with delirium & hallucinations, extreme headaches, persistent fevers, sudden increased sensitivity or intolerance to meds previously taken, episodes of shaking/shivering, episodes of near paralysis & other neuropsychiatric, neurological, metabolic & autonomic symptoms.
Ongoing sequelae & deterioration of baseline have continued, despite partial recovery from acute crises.

Current function at baseline (flares make it much worse):

Bathing - Assisted seated shower every 4-6+ weeks; each triggers tachycardia, lightheadedness, adrenaline surges, neuropsychiatric flares and flu symptoms lasting days; caregiver uses wipes weekly to clean me as much as possible, as doing it myself causes crashes

Toileting - Requires assistance during flares

Feeding - Cannot prepare meals; eats in bed; small snacks can trigger BP drops or surges; requires assistance during crashes

Mobility - Mostly bedbound except for toileting; maximum standing 3–5 minutes or seated 10 minutes max on a lower symptom day (sitting up in bed only, can’t put feet on floor for more than 2 mins) - sitting up or standing leads to instant worsening of symptoms, often unable to be upright at all during flares & have to remain supine all day, even eating or drinking (roll onto and prop up head a bit to eat)

Overall - 22+ hours/day in bed, mostly reclined with feet elevated; strict pacing; rolling symptom flares from simply existing despite maximum pacing efforts; I am sometimes technically “able” to do minor tasks but they result in worsening of symptoms. My life revolves around minimizing symptoms & avoiding major/dangerous prolonged flares.

I feel like the title explains itself. I miss myself. My fiance is busy alot, and he always apologizes for working and being busy. Like, thats what he is supposed to do. He is supposed to work. And yet he feels sorry bc im miserable at home. Im less miserable when hes around, but still miserable. And i just so dearly want a life. I cant talk to my friends about it, and i dont want the advice from my family. I feel alone. I have the most perfect partner, and i feel so alone. Im tired of being in pain, and im so tired of sleeping. I have a few hobbies now, i used to not be able to do anything, but those are limited. Im just done. And i want to binge watch a show and i cant bc it will throw me into a crash.

I just listened to piranesi, and i understand the horrors of it all. But i wish I had what he did. He was content. Was it misguided and built on trauma? Yes, but he was content. How do i get that. How do i see beauty and feel alive while trapped in this goddamn body.

I developed sudden onset cfs 6 years ago while working a ransomware recovery effort. We were required to work 7 days a week, long hectic hours. Towards the end I developed a viral infection. It was not COVID. I suspect it was a reactivation of the Epstein-Barr virus triggered by extended chronic stress. I have the markers. It literally was a very sudden onset of cfs. I collapsed after the last string of straight working days. I haven't been the sane since. For the first four years I relied on the healthcare system to help me. What a waste. Their stated strategy then, as is now, to rule out every possible cause before treating it. Basically I was a cash cow for many unneeded tests. I can't even get a list of all tests they want to run. Basically they are stalling. After four years of this my cognitive ability was fading. I was getting worse. I managed to keep my job by doing nothing outside of work other than resting for the next work day. I never got any advice from my doctors on how to manage the condition, much less treat it. My doctors didn't even know what pacing was. I finally took matters into my own hands. I started researching heavily. Right away I learned about D-Ribose, Acetyl-L-Carnitine and Ubiquinol CoQ10. These helped significantly. Over time, I found even these can trigger PEM so I started a balancing act of which days do I skip what supplement. But life was improved. I could walk more, but no vigorous exercise. Recently I came across a study showing promise. NMN (Nicotinamide Mononucleotide) and NR (Nicotinamide Riboside) are both dietary supplements used as precursors to boost levels of NAD+, a critical coenzyme involved in cellular energy and metabolism that declines with age. My cfs seems to be caused by a disfunction of the mitochondria triggered by a post viral infection during a period of prolonged stress. I tried taking NADH orally to boost mitochondria function, but I saw no benefit. Research indicated that NADH is broken down in the gut, so it isn't beneficial. As the NMN + NR supplements are needed precursors to generating NAD+ I figured it was worth a try. Its been a little more than a week, but I've noticed much improvement over everything else I've tried. I sleep better, wake feeling more refreshed and have more energy throughout the day. I quit taking Acetyl-L-Carnitine and Ubiquinol CoQ10 as it was causing inability to sleep with the NMN + NR supplement. This has been the best I felt since the onset of cfs.

20-ish years ago, I was a yoga teacher. It was never my career, but I had regular students, a strong practice. An hour a day of meditation/breathwork was normal. I spent weekends at meditation retreats. I studied techniques and traditions.

Point being: this isn't something I'm averse to or resisting trying. It was once a big part of my life.

But now: if I try, it just feels terrible. Overwhelmingly so. The problem isn't my mind, it's my body. If I start to focus inward and connect with my body, it just feels so toxic. Like I'm full of this stagnant, acrid, black sludge. I can take maybe a few seconds of it.

To make matters more irritating, assorted healthcare providers are constantly pushing meditation or breathwork. Often with "that" tone (you know what I mean). I haven't murdered any of them, but only because I'm pretty sure I can't dispose of a body without triggering PEM.

My old life tells me to sit with the discomfort. Let it move through me. My new life says "hard pass." Insight appreciated.

Anyone have similar experiences?

Ich hoffe hier finden sich vielleicht auch einige Reddituser aus Deutschland mit Me/CFS.

Meine Neurologin hat mir jetzt schon zum zweiten Mal eine Reha empfohlen. Allerdings kenne ich Rehas nur mit dem Konzept der Aktivierung.

Dass Maßnahmen dort gemacht werden müssen und dass das nicht zusammen mit Pacing funktioniert.

Hat jemand Erfahrungen mit Kliniken die sich damit wirklich auskennen und den Patienten die Ruhe geben, die sie brauchen?

Hatte jemand bereits eine Reha?

Ich überlege ob das wirklich sinnvoll für mich ist..

I’m (21F) about to finish uni. Recently diagnosed with ME after years of health getting worse (this year a drastic decline in being able to leave the house/being able to do basic tasks).

I felt symptoms from age 15/16 and doctors just kept putting me on folic acid any time I’d have the energy to go to the doctors about it (they already had me on the mini pill- so no periods).

Anyway, the last two years of uni have been awful. Problems with my attendance, loss of passion in what I do. I think I’ll pass but I feel like I’ve not actually done anything I’m proud of and that hurts most. I can’t go back and live with my family (bad relationship- currently minimal but considering no contact). (They also don’t understand my mental/physical health issues and quite frankly don’t really care)

My partner is doing his final year at uni next year. We want to keep living together in the city we are at uni, but once I’m out of uni in a few weeks I don’t know how I’ll survive financially- I can barely do basic tasks to look after myself. The job hunt has been endless and nothing- and no work from home jobs either. I don’t think I’ll be able to cope not living with my partner (for context I also have BPD *ffs* - I manage it very healthily but still really struggle with attachment/separation anxiety)

I’ve been referred to an ME specialist but it’s all a waiting game. PIP is the next thing but I’ve had an awful experience with them before so not feeling too confident. I’m just kind of lost and mourning the life I thought I’d have. Things are getting more difficult by the day and it feels so isolating and like no one understands (other than my partner who tries his best).

I don’t know anyone who has ME, so no one to talk to/get advice from or just relate with. When it first started getting this bad and I got diagnosed I thought: “Wait? How do people with this survive? How will I? How do other people manage this? How do they work and get money to live?”

Any comments would be much appreciated

I have me/cfs and it’s been gradually getting worse for about a year but I’ve been ignoring it because I was still able to function except now I really can’t function!

I’ve seen some people take electrolytes and I was wondering what other things along the same lines has worked for people

I’m willing to try anything really as long as I can access it in the uk without a prescription.

Symptoms include.
Severe fatigue and PEM
Headaches (not sure if they’ve got to the point they would be classed as migraines)
Randomly going really hot especially if I’ve exerted myself
Brain fog
Leg weakness
Some dizziness when I stand

Give me your most unhinged chronic illness hacks!

Anyone else have experience with creatine supplementation? It seems to have drastically improved my adrenaline dumps, but now I’m feeling more fatigue

Thanks in advance for your comments 🙏🏽

I’m here due to Covid. Have had long covid 2 years 7 months.

My symptoms :

* SEVERE cognitive fatigue

* concussed feeling

* confused mentally

* memory loss

* blank mind / numb brain

* vision changes (DPDR) constant 24/7 dreamstate vision that makes it feel as if I’m not really here at all.

Can anyone give me any hope?

I’m feeling like giving up :( I’m trying not to. But I need more capacity to be able to survive in this world.

My symptoms started 9 years ago and i have yet to find a diagnosis. I cannot attend college or hold a job and it's heavily affecting my life yet my family believes it's just anxiety due to not having a diagnosis. Doctors have no idea what it might be. They suggested me/cfs a few months ago and after doing my research i realized that for once all of my symptoms matched but they eliminated the option after i was unresponsive to duloxetine and pregabalin. Now they're telling me to exercise more yet any sort of activity even just walking to the bathroom and back makes my symptoms worse. I cant even sit on a chair for more than 30 min without my dizziness and pain getting unbearable. They're insisting i'm just out of shape and that it's mental health related. While i've never been an athlete, i used to be quite active back when my symptoms were more manageable. And if anything my mental health is bad because of my physical health not the other way around.

Is it still possible that it might be me/cfs despite not responding to treatment? Is it worth trying to press further?

Sorry i need to vent :(

Every day is the same. No improvement for months. I sleep 3–4 hours, even benzos don’t help anymore. I’m reactive to everything. Every crash gets worse. Even in my dreams I wake up with my heart pounding at everything. I just lie in bed and the whole bed shakes from my heartbeat.

My mother is terrorizing me. Yesterday I had a mental breakdown and almost suffocated. This happens every week. I ran out of the house, went down the stairs, collapsed and my legs gave out under me.

There’s been too much damage already. No regeneration anymore. I haven’t been able to eat properly for 5 days. Nobody takes me seriously — people just kick me when I’m already down and destroy me mentally even more.

Nobody understands me. I can’t even leave, and I can’t improve either, because I know what I’ve done to myself. I live in a country where nobody cares. My family situation is horrible. Everything gets worse day by day.

I feel like I’m losing control from all the suffering, and people just make jokes about me.
I cant even recognise myself, atrophy, no more hair, old skin, dehydration.

Hi everyone. For context I have moderate-severe M.E, bed bound with multiple conditions alongside M.E such as POTs MCAS hEDS endo etc. I have dentist booked it as I have 1 dead tooth and 1 infected tooth (due to being bed bound leaving house for appointments/check ups so difficult and has led to neglecting my body/teeth). I’m extremely nervous as even typing a message right now is enough to send me into a flare and PEM crash, has anyone got any advice on best things to do before/after extractions in terms of PEM crashes/flare ups. And any advice on if you’d opt for inhalation sedation or IV sedation as I’ve been offered both. Thank you guys.

Stuck inside in a horrible crash, would love to gather reasons why being inside is also great.

Mine:

- Driving: Navigating traffic and the anxiety of getting on a highway, drunk drivers, getting lost, finding parking!

- Waiting in line at a busy restaurant while sooo hungry, taking forever to get the food, then seeing people eyeing my table and knowing I need to quickly eat and leave

- How much more concerned I am about my appearance when I’m outside

- Trying to cram so much in a day that I’m never present or enjoying myself, but just worried I won’t make it to the next thing in time (I used to do this a lot when I was more able bodied)

- Honestly I do not miss partying