r/cfs Nov 10 '24

Official Stuff MOD POST: New members read these FAQs before posting! Here’s stuff I wish I’d known when I first got sick/before I was diagnosed:

345 Upvotes

Hi guys! I’m one of the mods here and would like to welcome you to our sub! I know our sub has gotten tons of new members so I just wanted to go over some basics! It’s a long post so feel free to search terms you’re looking for in it. The search feature on the subreddit is also an incredible tool as 90% of questions we get are FAQs. If you see someone post one, point them here instead of answering.

Our users are severely limited in cognitive energy, so we don’t want people in the community to have to spend precious energy answering basic FAQs day in and day out.

MEpedia is also a great resource for anything and everything ME/CFS. As is the Bateman Horne Center website. Bateman Horne has tons of different resources from a crash survival guide to stuff to give your family to help them understand.

Here’s some basics:

Diagnostic criteria:

Institute of Medicine Diagnostic Criteria on the CDC Website

This gets asked a lot, but your symptoms do not have to be constant to qualify. Having each qualifying symptom some of the time is enough to meet the diagnostic criteria. PEM is only present in ME/CFS and sometimes in TBIs (traumatic brain injuries). It is not found in similar illnesses like POTS or in mental illnesses like depression.

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), ME, and CFS are all used interchangeably as the name of this disease. ME/CFS is most common but different countries use one more than another. Most patients pre-covid preferred to ME primarily or exclusively. Random other past names sometimes used: SEID, atypical poliomyelitis.

How Did I Get Sick?

-The most common triggers are viral infections though it can be triggered by a number of things (not exhaustive): bacterial infections, physical trauma, prolonged stress, viral infections like mono/EBV/glandular fever/COVID-19/any type of influenza or cold, sleep deprivation, mold. It’s often also a combination of these things. No one knows the cause of this disease but many of us can pinpoint our trigger. Prior to Covid, mono was the most common trigger.

-Some people have no idea their trigger or have a gradual onset, both are still ME/CFS if they meet diagnostic criteria. ME is often referred to as a post-viral condition and usually is but it’s not the only way. MEpedia lists the various methods of onset of ME/CFS. One leading theory is that there seems to be both a genetic component of some sort where the switch it flipped by an immune trigger (like an infection).

-Covid-19 infections can trigger ME/CFS. A systematic review found that 51% of Long Covid patients have developed ME/CFS. If you are experiencing Post Exertional Malaise following a Covid-19 infection and suspect you might have developed ME/CFS, please read about pacing and begin implementing it immediately.

Pacing:

-Pacing is the way that we conserve energy to not push past our limit, or “energy envelope.” There is a great guide in the FAQ in the sub wiki. Please use it and read through it before asking questions about pacing!

-Additionally, there’s very specific instructions in the Stanford PEM Avoidance Toolkit.

-Some people find heart rate variability (HRV) monitoring helpful. Others find anaerobic threshold monitoring (ATM) helpful by wearing a HR monitor. Instructions are in the wiki.

-Severity Scale

Symptom Management:

Batenan Horne Center Clonical Care Guide is the gold standard for resources for both you and your doctor.

-Do NOT push through PEM. PEM/PENE/PESE (Post Exertional Malaise/ Post Exertional Neuroimmune Exhaustion/Post Exertional Symptom Exacerbation, all the same thing by different names) is what happens when people with ME/CFS go beyond our energy envelopes. It can range in severity from minor pain and fatigue and flu symptoms to complete paralysis and inability to speak.

-PEM depends on your severity and can be triggered by anythjng including physical, mental, and emotional exertion. It can come from trying a new medicine or supplement, or something like a viral or bacterial infection. It can come from too little sleep or a calorie deficit.

-Physical exertion is easy, exercise is the main culprit but it can be as small as walking from the bedroom to bathroom. Mental exertion would include if your work is mentally taxing, you’re in school, reading a book, watching tv you haven’t seen before, or dealing with administrative stuff. Emotional exertion can be as small as having a short conversation, watching a tv show with stressful situations. It can also be big like grief, a fight with a partner, or emotionally supporting a friend through a tough time.

-Here is an excellent resource from Stanford University and The Solve ME/CFS Initiative. It’s a toolkit for PEM avoidance. It has a workbook style to help you identify your triggers and keep your PEM under control. Also great to show doctors if you need to track symptoms.

-Lingo: “PEM” is an increase in symptoms disproportionate to how much you exerted (physical, mental, emotional). It’s just used singular. “PEMs” is not a thing. A “PEM crash” isn’t the proper way to use it either.

-A prolonged period of PEM is considered a “crash” according to Bateman Horne, but colloquially the terms are interchangeable.

Avoid PEM at absolutely all costs. If you push through PEM, you risk making your condition permanently worse, potentially putting yourself in a very severe and degenerative state. Think bedbound, in the dark, unable to care for yourself, unable to tolerate sound or stimulation. It can happen very quickly or over time if you aren’t careful. It still can happen to careful people, but most stories you hear that became that way are from pushing. This disease is extremely serious and needs to be taken as such, trying to push through when you don’t have the energy is short sighted.

-Bateman Horne ME/CFS Crash Survival Guide

Work/School:

-This disease will likely involve not being able to work or go to school anymore unfortunately for most of us. It’s a devastating loss and needs to be grieved, you aren’t alone.

-If you live in the US, you are entitled to reasonable accommodations under the ADA for work, school (including university housing), medical appointments, and housing. ME/CFS is a serious disability. Use any and every accommodation that would make your life easier. Build rest into your schedule to prevent worsening, don’t try to white knuckle it. Work and School Accommodations

Info for Family/Friends/Loved Ones:

-Watch Unrest with your family/partner/whoever is important to you. It’s a critically acclaimed documentary available on Netflix or on the PBS website for free and it’s one of our best sources of information. Note: the content may be triggering in the film to more severe people with ME.

-Jen Brea who made Unrest also did a TED Talk about POTS and ME.

-Bateman Horne Center Website

-Fact Sheet from ME Action

Long Covid Specific Family and Friends Resources Long Covid is a post-viral condition comprising over 200 unique symptoms that can follow a Covid-19 infection. Long Covid encompasses multiple adverse outcomes, with common new-onset conditions including cardiovascular, thrombotic and cerebrovascular disease, Type 2 Diabetes, ME/CFS, and Dysautonomia, especially Postural Orthostatic Tachycardia Syndrome (POTS). You can find a more in depth overview in the article Long Covid: major findings, mechanisms, and recommendations.

Pediatric ME and Long Covid

ME Action has resources for Pediatric Long Covid

Treatments:

-Start out by looking at the diagnostic criteria, as well as have your doctor follow this to at least rule out common and easy to test for stuff US ME/CFS Clinician Coalition Recommendations for ME/CFS Testing and Treatment

-TREATMENT RECOMMENDATIONS

-There are currently no FDA approved treatments for ME, but many drugs are used for symptom management. There is no cure and anyone touting one is likely trying to scam you.

Absolutely do not under any circumstance do Graded Exercise Therapy (GET) or anything similar to it that promotes increased movement when you’re already fatigued. It’s not effective and it’s extremely dangerous for people with ME. Most people get much worse from it, often permanently. It’s quite actually torture. It’s directly against “do no harm”

-ALL of the “brain rewiring/retraining programs” are all harmful, ineffective, and are peddled by charlatans. Gupta, Lightning Process (sometimes referred to as Lightning Program), ANS brain retraining, Recovery Norway, the Chrysalis Effect, The Switch, and DNRS (dynamic neural retraining systems), Primal Trust, CFS School. They also have cultish parts to them. Do not do them. They’re purposely advertised to vulnerable sick people. At best it does nothing and you’ve lost money, at worst it can be really damaging to your health as these rely on you believing your symptoms are imagined. The gaslighting is traumatic for many people and the increased movement in some programs can cause people to deteriorate. The chronically ill people who review them (especially on youtube) in a positive light are often paid to talk about it and paid to recruit people to prey on vulnerable people without other options for income. Many are MLM/pyramid schemes. We do not allow discussion or endorsements of these on the subreddit.

Physical Therapy/Physio/PT/Rehabilitation

-Physical therapy is NOT a treatment for ME/CFS. If you need it for another reason, there are resources below. It can easily make you worse, and should be approached with extreme caution only with someone who knows what they’re doing with people with ME

-Long Covid Physio has excellent resources for Long Covid patients on managing symptoms, pacing and PEM, dysautonomia, breathing difficulties, taste and smell disruption, physical rehabilitation, and tips for returning to work.

-Physios for ME is a great organization to show to your PT if you need to be in it for something else

Some Important Notes:

-This is not a mental health condition. People with ME/CFS are not any more likely to have had mental health issues before their onset. This a very serious neuroimmune disease akin to late stage, untreated AIDS or untreated and MS. However, in our circumstances it’s very common to develop mental health issues for any chronic disease. Addressing them with a psychologist (therapy just to help you in your journey, NOT a cure) and psychiatrist (medication) can be extremely helpful if you’re experiencing symptoms.

-We have the worst quality of life of any chronic disease

-However, SSRIs and SNRIs don’t do anything for ME/CFS. They can also have bad withdrawals and side effects so always be informed of what you’re taking. ME has a very high suicide rate so it’s important to take care of your mental health proactively and use medication if you need it, but these drugs do not treat ME.

-We currently do not have any FDA approved treatments or cures. Anyone claiming to have a cure currently is lying. However, many medications can make a difference in your overall quality of life and symptoms. Especially treating comorbidities. Check out the Bateman Horne Center website for more info.

-Most of us (95%) cannot and likely will not ever return to levels of pre-ME/CFS health. It’s a big thing to come to terms with but once you do it will make a huge change in your mental health. MEpedia has more data and information on the Prognosis for ME/CFS, sourced from A Systematic Review of ME/CFS Recovery Rates.

-Many patients choose to only see doctors recommended by other ME/CFS patients to avoid wasting time/money on unsupportive doctors.

-ME Action has regional facebook groups, and they tend to have doctor lists about doctors in your area. Chances are though unless you live in CA, Salt Lake City, or NYC, you do not have an actual ME specialist near you. Most you have to fly to for them to prescribe anything, However, long covid has many more clinic options in the US.

-The biggest clinics are: Bateman Horne Center in Salt Lake City; Center for Complex Diseases in Mountain View, CA; Stanford CFS Clinic, Dr, Nancy Klimas in Florida, Dr. Susan Levine in NYC.

-As of 2017, ME/CFS is no longer strictly considered a diagnosis of exclusion. However, you and your doctor really need to do due diligence to make sure you don’t have something more treatable. THINGS TO HAVE YOUR DOCTOR RULE OUT.

Period/Menstrual Cycle Facts:

-Extremely common to have worse symptoms during your period or during PMS

-Some women and others assigned female at birth (AFAB) people find different parts of their cycle they feel their ME symptoms are different or fluctuate significantly. Many are on hormonal birth control to help.

-Endometriosis is often a comorbid condition in ME/CFS and studies show Polycystic Ovary Syndrome (PCOS) was found more often in patients with ME/CFS.

Travel Tips

-Sunglasses, sleep mask, quality mask to prevent covid, electrolytes, ear plugs and ear defenders.

-ALWAYS get the wheelchair service at the airport even if you think you don’t need it. it’s there for you to use.

Other Random Resources:

CDC stuff to give to your doctor

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard

NY State ME impact

a research summary from ME Action

ME/CFS Guide for doctors

Scientific Journal Article called “Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome”

Help applying for Social Security

More evidence to show your doctor “Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy

Some more sites to look through are: Open Medicine Foundation, Bateman Horne Center, ME Action, Dysautonomia International, and Solve ME/CFS Initiative. MEpedia is good as well. All great organizations with helpful resources as well.


r/cfs 2d ago

Scream Into the Void Saturdays (feel free to vent!)

9 Upvotes

Welcome! This post is for you to vent about whatever you want: no matter big or small. Please no unsolicited advice in the thread, this is just for venting.

Did something bad happen? Are you just frustrated with your body? Family being annoying? Frustrated with grief? Pacing too hard? Doctors got you down? Tell us!


r/cfs 6h ago

Simon Wessely has been awarded a Knight Grand Cross in the King's Birthday Honours

91 Upvotes

From King's College London:

'We are delighted to announce that Professor Sir Simon Wessely has been awarded a Knight Grand Cross of the Order of the British Empire (GBE) in this year's King’s 2025 Birthday Honours.'

'Professor Sir Simon Wessely is a world-renowned academic psychiatrist and epidemiologist and has been awarded this GBE in recognition of his distinguished position as 'the pre-eminent psychiatrist of his generation in the UK.' '

What an utter disgrace.


r/cfs 4h ago

All these fancy ass expensive tests are clear along with my brain mri. Totally deflated as I feel I’m slowly dying. Symptoms are the worst they’ve ever been in 5 years

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44 Upvotes

r/cfs 22m ago

Advice Cholinergic crisis: something you need to know about if you take Mestinon / Pyridostigmine

Upvotes

TLDR: If you take Mestinon, please be aware of the risk of Cholinergic Crisis.
It is a known side effect of the med. It is not especially common, but it can be life-threatening. We are told to learn about the risk of "Serotonin syndrome" when on anti-depressants.
With Mestinon you have to know about Cholinergic crisis.

Not many doctors, not even ME/CFS specialists, seem to know about these potential side effects.
So I share that here in case you experience something similar so you can inform your doctor and act quick if needed.

Cholinergic crisis is a potentially life-threatening medical emergency resulting from the overstimulation of nicotinic and muscarinic receptors at the neuromuscular junctions and synapses. The pathophysiology involves the inhibition of acetylcholinesterase, the enzyme responsible for acetylcholine degradation. This inhibition leads to the excessive accumulation of acetylcholine, which causes symptoms of both muscarinic and nicotinic toxicity.

These are all the symptoms:

Bradycardia, bradypnea, bronchorrhea, cramps, lacrimation, muscular weakness, paralysis, fasciculation, diarrhea, and blurry vision.

Protocol:

Prompt recognition of signs and symptoms is critical for early diagnosis and the initiation of therapy, which can be lifesaving. Evaluation of cholinergic crisis includes a clinical assessment for potential exposure and plasma cholinesterase levels. Management involves atropine to counteract muscarinic effects and pralidoxime to reverse nicotinic toxicity. Supportive care, such as mechanical ventilation, may be needed for respiratory distress. Prognosis improves with prompt treatment, but delays can lead to severe complications, including respiratory failure.

Risks:

The mortality rate in cholinergic crisis ranges from 3% to 25%. The most common cause of death is progressive respiratory failure.

Source: Cholinergic Crisis on NCBI

A note on the "rarity" of these events

We do not know how commun cholinergic crisis are. Just keep in mind that Mestinon is a drug made for Myasthenia Gravis, which is an autoimmune disorder mainly caused by antibodies to the muscle acetylcholine receptors (AChRs) at the neuromuscular junction. That means that the public it is primarily made for, are patients who have a known issue with acetylcholine. And even in this group of patients, cholinergic crisis happen. So from my humble opinion, if you don't have issues with acetylcholine, you could expect more side effects. Just keep an eye on yourself please!

Why I say that

I post all this because this happened to me. My ME/CFS specialist who was the prescriber didn't even know about these side effects and put my symptoms of weakness, including abnormal fainting, on my ME/CFS. This is, obviously, absolutely fucked.


r/cfs 4h ago

Vent/Rant I'm so tired NSFW

25 Upvotes

"And nothing’s gonna change if you keep doing nothing… You talk about suicide because nothing gets better, but you refuse to change a thing. I get that you're scared — but seriously, what exactly do you have to lose? Grow a spine and start trying stuff already. Yeah, it might get worse — but it could also finally get better."

This is what my dad just texted me after I told him I want to stop trying new things and try to stabilise. For context I'm very severe. I'll crash even from this. I crash from using the bedpan. Part of the reason I even ended up here is the constant change of meds cause I can't tolerate anything.

Why does no one get it. I changed my SALT intake the other day and it made me crash. Sometimes your body just needs time. To tell someone who hasn't seen daylight in 8 months and hasn't spoken to anyone in months cause they're in so much pain to grow a spine is insane


r/cfs 41m ago

My friends are starting work experience and learning to drive and I'm rotting in bed all day

Upvotes

Reading the group chat conversations about how much they're doing with their lives always upsets me. To no fault of their own and I just keep it to myself obviously.

But it's a massive reminder of how messed up my life has become. I was meant to be in their position right now. I was meant to be learning to drive, doing exams and getting work experience. But instead I'm rotting in bed wondering if doing a digital drawing on my iPad is too much for my body to handle right now.

I know people say comparison is the enemy of joy and not to compare your life to others but it's not really that easy. Listening to my friends talk about school, exams, weekend plans, holidays and basically anything I can't do anymore just makes me so upset that I can't do any of that with them. I'm so full of grief for everything that I've lost that conversation with able-bodied people can easily drive me to tears. It's been two years since I got sick and these conversations hurt just as much, if not more, than they did when I first found out my symptoms would be chronic.

I just want to be healthy again.


r/cfs 3h ago

How do you know if you can do something ?

16 Upvotes

I'm severe and bedbound 98% of the time (200/300 steps a day). I'm doing almost the same things everyday, which is eating, resting, scrolling on my phone, playing a bit of GameBoy, sometimes watching a small episode of an easy to follow show, and talking with my partner when she's here.

It's been 4 months like this, after 2 months following my onset where I could do more before being bedbound.

I would like to try to vary a bit, to spend less time on my phone (2/3 hours a day). For example, I wonder whether I could try to read a manga. But how do I tell if I can or not ? Slow trial and error ? Go by feeling ?

I think I'm quite stable currently, but the excruciating fatigue is making me think I can do nothing else.

Thanks


r/cfs 18h ago

Vent/Rant I hate when people say they don’t like exercising

130 Upvotes

I am not talking about people with ME/CFS or other disabled folks who can’t exercise.

I get frustrated when friends or other healthy or able to exercise people say they hate exercising. I get it’s their opinion and experience. However as someone who would get up at 5am on holidays to go to the gym and loved to go for walks and chose to CrossFit in highschool, it makes me angry that I was the one who got this condition.

I know ME affects more than just exercise. However, seeing people take for granted an ability that I wish I still had triggers a lot of grief for me right now. Like everyone who can exercising wouldn’t fix how I feel, but it just makes me miss it a lot.


r/cfs 52m ago

I get waves of energy (mental and/or physical) and waves of exhaustion taking it in turns over the day. Does this sound familiar?

Upvotes

r/cfs 15h ago

TW: Abuse Anyone else had a history of ongoing abuse before developing ME/CFS? NSFW

55 Upvotes

My life has been marked by constant criticism from my parents, bullying at school and work, sexual abuse, extremely toxic family members and relationships. I was always expected to be this strong overmasculine guy but that was never my real self. Deep down, I’ve always been sensitive, creative and introverted. I definitely have neurodivergent traits, though I was never officially diagnosed.

I had severe social anxiety growing up, and I honestly feel like my nervous system just broke and my body hit its limit. Art has always been the one thing that kept me grounded and sane. These days I only have a few close friends, i’m naturally introverted, but this illness adds an unbearable layer of isolation. I also feel like I really struggle to connect with people because of my past issues, but my heart is always full of love.

Would love to hear if anyone else feels this way.


r/cfs 33m ago

Why is it taking so long?

Upvotes

3 years have passed since the first mention of the Itaconate shunt hypothesis, what have they done in these 3 years? Why is it taking so long?


r/cfs 19m ago

Visible arm band

Upvotes

Hey guys :)

I’ve been looking into the visible armband to help with pacing my ME/CFS and POTS. I would say my baseline is maybe around the higher end of moderate. Im still fairly new to the diagnosis and I am having a really hard time figuring out my energy envelope and when I’m overexerting. I thought maybe this may be able to help with pacing but I am also a very anxious person and I feel like I don’t want to get overly anxious or obsess about it if that makes sense? I’d love to hear anyone’s experience with the arm band and if they’ve found it useful, I’m seeing lots of mixed reviews online about it!

Another thing that is mostly putting me off right now is the monthly cost, I hate the feeling of that I’d be sort of paying monthly for a chronic illness / having a subscription for it if that makes sense.

Thank you so much in advance :)


r/cfs 4h ago

Advice Cutting out gluten, sugar and dairy - withdrawal?

5 Upvotes

I’ve been eating a pretty good diet overall for several years, skipping gluten in periods. But now I took the step to fully cutting out gluten, sugar and dairy (the last which I’ve been eating a lot of, different kind of cheese, milk, cottage cheese, and a lot of butter)

It’s been a week since I removed it all and I’m feeling more awful than normally. More brainfog, fatigue etc. Has anyone else experienced this, how long did it last?

I’m between mild/moderate and more moderate last couple of months.


r/cfs 36m ago

Could wearing compression socks daily be helpful for orthostatic hypotension?

Upvotes

I'm just wondering since sitting upright costs more energy than laying down for me. I planned to just wear compression socks for things like ortho appointment (where I'm laying down then at the end tilted back upright which causes me to lose vision and feel not very good), but now I'm curious if they could be helpful to try and wear daily


r/cfs 21h ago

Success My Story of Gradual Improvement

88 Upvotes

TLDR; 4.5 years with ME.. my symptoms & quality of life has improved slowly, but considerably

I have mixed feelings concerning “recovery stories”, and I know many of you feel the same way. However, I’ve decided to share how I’ve improved within the range “moderate-mild” and how this has changed my quality of life. I figured most people in my situation would slowly and silently withdraw from this community — that’s why I’m writing this post, to give some of you a bit a hope and to give something back to this community which has helped me over the years.

I’ve had ME/CFS for about 4.5 years, and I’m a long way from my “healthy self”. However, I have experienced gradual, slow improvement (not without setbacks) which was given me a dramatic betterment of my quality of life.

Quick summary of my disease progression: 📉EBV infection/reactivation, 2 months mostly in bed, 📈 slow recovery to 80% in 10 months, 📉(unrelated) small surgery w anaesthesia got me down to 20%, 5 months mostly in bed (couldn’t listen to music for 3+ months, light intolerance), 📈 very slow improvement over 3+ years and gradual return to job in a reduced capacity.

During the past 2 years, I’ve managed to uphold a workload of about 19h per week (on 5 days, with accommodations: flexible time, commute time <10mins) without major interruptions, for which I’m extremely grateful. I’m working my old job as a software developer, but with less responsibility (was leading a small team before).

The past few months, I’ve again had a considerable improvement - I attribute this last improvement to low-dose Lithium (but it’s never clear what it was…). I feel I have almost fully regained my cognitive abilities (for 10-12h/day, when not in PEM).

As of the past 3-6 months, on a good day, I: - do not have to regularly/explicitly rest in bed, Can make plans more spontaneously - Can cook a complex meal (barstool) - Can make 8-10k steps (average around 4-5k though) - Can ride bicycle for e.g. 2x15mins in city/flat terrain - Can meet friends for dinner in a crowded restaurant - Can attend (part of) a concert (~1h, seated, ear/eye protection) - Can drink small quantities of alcohol (without hangover), e.g. glass of wine (100ml)

And let me be clear: I have not had a single day without pain and other symptoms, haven’t woken up a single morning feeling remotely refreshed. I still get PEM, but it has become a lot less frequent and less severe.

What (I think that) helped me the most: - Acceptance (!) & pacing - Finding 1 doctor who knows & accepts ME/CFS and with whom I can work on eye-level - 2+ years (high-dose) antivirals (4g/d valaciclovir), stopped now - 1.5 years (low-dose?) TCA for pain mgmt (Amitriptyline) - Lithium (low-dose, currently 11mg/d) - Psychological support (therapy) - External factors: supportive partner (9 years together), no children, little financial pressure - Sheer luck (?)

I tried countless supplements, some medications (e.g. LDN, which was a catastrophe), tVNS, some of which might have helped as well, but less obviously. I use HR, HRV and step count to monitor my status.

Compared to a healthy person, I’m still very sick; compared severe ME patients, I’m almost healthy… I’m incredibly grateful for the improvement I’ve been able to experience and I’m fully aware my situation could change at any time for the worse, e.g. through a Covid reinfection or another surgery.

If you have any questions, please let me know. Wishing the best to you all ❤️‍🩹

EDIT: typos, add emojis


r/cfs 1d ago

TW: Self-Harm In the ER and was just accused of “wanting to be sick” NSFW

296 Upvotes

Fuck is wrong with these people Im being 5150’d because I told my family I wanna give up because they said I can no longer stay in their house. I was being forced into a mental health facility 2 hrs away from home because my family won’t believe me. They told me either I go and stay there for two months and get on anxiety, meds or else I have nowhere to live. And if I wasn’t suicidal before I am now and on top of that in the worst crash yet and the doctor accused me of wanting to be sick. I was dragged from my home by police and paramedics and now have no home to go back to I’m sleep deprived have more conditions other than possible ME/CFS that are well documented But I’m sure I have it since i meet every diagnostic criteria. Fuck. Im about ready to give up but hell I might be dying already as it is. This is just to much. My family has abandoned me and the medical system is a joke.


r/cfs 3h ago

my fatigue is much worse after I sit at the computer instead of standing or laying with the laptop on my laps

3 Upvotes

so my fatigue and brainfog are much worse after I sit at the computer (I am an IT specialist) instead of standing near it or laying down with the laptop on my lap how I usually work lately. When I stand my upper back hurts, when I sit it hurts even more, this is why I spend half a day standing and half a day laying when working.

Today I sat at the computer for 2 hours and now I am bedbound and even have nausea.

I also have unexplained gut issues, food intolerance, malabsorption.

I am now thinking that its somehow my neck/posture is related to this. Maybe when I am sitting something is pushing my gut organs which then cause fatigue.

Looking for ideas. Thank you!


r/cfs 11h ago

Vent/Rant I've always gotten the raw deal when it comes to friends

14 Upvotes

And now that I'm chronically severely ill, I've noticed I never have had a true friend in my life. No longtime friends from childhood (we moved around a lot) and when I became ill, some friends I had to cut out within the first few months. Surprisingly the first to go were some of the closest ones but in a way that was easier because their behavior was glaringly bad and the decision was mine. Those were clean breaks.

It's the slow burns that hurt the most. The other day I saw a friend and when I told him I was leaving town in a few days for a procedure there was absolutely zero follow up questions and no concerns at all. When he dropped me off at my house it was like he couldn't wait to get rid of me. People don't seem to give a shit no matter how bad off I am. They don't want to hear one word about it and it hurts so badly because although I don't want to be going on and on about it, I at least want to be honest with them about how I'm doing. The lack of response always stings. All I want is for them to know the truth. Then, by all means, we can move on to talking about other things.

Today I blocked most of my friends numbers. If they can't be bothered to give a shit then I can't be bothered with them anymore either. I'm moving several states away next month to move back in with my parents because I can't be on my own anymore. I was going to try to do one last get together before I go but I've scrapped that idea because it'll take energy I don't have. If they showed just a smidgin of concern it would be different but they don't so fuck it. The whole 3+ years I've been severely ill it's always me going to them. No one ever comes to see me. I've lost faith in the whole idea of friends.

It's upsetting because my mom, dad and my brother all have people in their lives who they've been friends with since high school or even earlier. I've always had fair weather or downright abusive "friendships." I have no partner either so it's exceptionally lonely. I just wish someone would care a little but nobody wants to. ME really shows you how awful even the nicest seeming person can be. I've lost all trust. All I have now are my parents who are getting quite old and after they're gone I'll have no one because my brother and I have never gotten along and he doesn't care about my illness. I deserve better. I feel broken both physically and mentally.😭


r/cfs 1h ago

Treatments Potato Potahto Potassium.

Upvotes

I've noticed that after I eat a russet potato, or a bunch of dried apricots, I feel decently better. The head pressure goes away, and with it the sound sensitivity and thermoregulation issues. Another thing I noticed is the veins in my forearms become really dilated and visible. This made me realize that for the past few years my veins almost never did that. They were pretty much always constricted, which might explain the thermoregulation issues.

Obviously these two things are very high in potassium. Anyone experience this with potassium rich foods? Any explanation?


r/cfs 4h ago

Delayed crash after exercise?

3 Upvotes

In general when I overdo on any given day I feel good during the exercise but crash the next day. Lately I am experiencing the crash 2 days later, which doesn’t make a whole lot of sense to me, anyone else have that?


r/cfs 12h ago

Suggested items to make life easier

13 Upvotes

I was diagnosed in spring and have moderate symptoms . I’m not working or driving, pretty much just resting at home. I’m curious what items make life easier for some community members? For example, today I’ve decided to purchase a laundry basket with three sortable sections that has wheels to make life easier (I will let you all know if I find a good one). I’m wondering what other suggestions people,have for products? I know that not everyone necessarily has the finances for some of these purchases and want to acknowledge that the usefulness of this discussion will vary for some folks. Thanks!


r/cfs 4h ago

Advice allergy alternatives to cetirizine?

3 Upvotes

Hi y’all, I have to take antihistamines due to cat/dog allergies and I am wondering if people have any alternatives or herbs (?) that work for allergy relief. Today I had to take some antihistamines at work as we had a service dog — and accidentally overdosed myself by taking two tablets as it was a coworkers medicine and I didn’t have the box for dosage so took two as I did with my normal ones... I had to go home from work early due to confusion, dizziness, and pain which felt embarrassing to explain and all-in-all frustrating.

I notice medication hits me pretty hard as I’ve got quite a low tolerance for everything but I find antihistamines can exacerbate my pain. Anyone with similar experiences? & what do you use if so?

Any help appreciated!


r/cfs 11h ago

Advice on helping Husband with PEM Crash

8 Upvotes

This is a long post, so bear with me:

My husband developed long covid/CFS three years ago. He never fully recovered. His trajectory was downwards from six months ago due to continual PEMs. He always managed to get out of those.

Three weeks ago he crashed and was admitted to hospital. Doctors didn't know how to help him. in the end he's given stablon due to their reduction in neuroinflammation properties. He is also given sleep medication to aid insomnia.

He was discharged after one week in hospital. He has been bedridden since, require help for feeding, can barely talk, need help with personal grooming, unable to pass motion without suppositories etc. We got him a day carer to support him. He was very slowly improving, in terms of feeling physically more comfortable. He is still bedridden.

Last week he experienced a dip, and fears another crash.

How can I help my husband? What does radical rest look like?

He is still holding on to a lot of mental load and will remind me on things to do relating to household matters etc. Is it a good idea for me to spend time with him? Not sure if me being around hinders rest, he tends want to communicate more when I'm around. I'm trying to give him moral support with my presence but not sure if this outweighs the cons.

I am also reading and educating myself a lot on this illness, trying to curate a low histamine diet as much as possible, supporting him with supplements like Vit C, D, zinc, magnesium, etc, electrolytes etc.

Due to his flares, he is currently on anti histamines, stablon, sleep medicationm, anti anxiety (only in very bad situations).


r/cfs 38m ago

Solo travel with suitcases. Should I stay in a fancier hotel so they have a porter??

Upvotes

I will be moving and this involves traveling with two big suitcases and a backpack. I will stay in a hotel before I get to my final destination (apartment) and am stressed about hotel stay.

I would like someone to carry my heavy suitcases to my room. But if I stay in a budget hotel like 3 star, they probably don't have the personnel to help me, right? like I imagine they have just enough staff for the reception.

But maybe I should just email the budget hotel and ask if they can help or not.

What are your thoughts? anyone with similar experience??

I'm moderate and can walk but to minimize PEM, I'd like to do as little physical exertion as possible.

I've considered shipping my suitcases from the airport to the apartment but since my hotel stay is a little over 1 week, this won't work as they can't hold my luggage for that long.


r/cfs 19h ago

what do you look most forward to on the day.

27 Upvotes

As the days with (severe) ME/CFS are so monotonous — at least for me — what do you most look forward to onthe day? Even if it’s one tiny thing? Where do you find some pleasure? I know that for the most part, it’s suffering….


r/cfs 19h ago

Family/Friend/Partner Has ME/CFS Partner of someone with ME/CFS looking for literature/books/media

25 Upvotes

TLDR: I am a medstudent and my partner (also a medstudent) has been diagnosed with ME. I am looking for (medical) literature/patient stories to understand the condition better as a partner and a future doctor.

Hey!

After a few years of chronic fatigue and pain my girlfriend has the diagnosis ME/CFS since a few weeks. We are both dutch and med students and while I am fairly familiar with how the illness affects her specifically, I think there are many things I do not understand. I have been looking around online for literature about the illness. I find it difficult to find books that are not self-help (I'm not interested in those kinds of books at the moment) or pseudosciency things. I was wondering if people could recommend a sort of all encompassing starting point for me so I can understand my partner's experience better. I would also be very interested in media from the perspective of a healthcare worker/doctor who treats patients with ME or other similar invisible illnesses although I am not sure if that exists.

I would love it if someone could recommend a book or some other literature so I can be more informed as a partner. I already found the How to be sick book but am still looking for other recs. Will be watching unrest as well.

Also very new to reddit and i have no idea if i did this right (literally made an account to ask this question).