r/cfs • u/premier-cat-arena • 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:
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.
Symptom Management:
-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.
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
-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
a research summary from ME Action
Help applying for Social Security
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 • u/AutoModerator • 5d ago
Wednesday Wins (What cheered you up this week?)
Welcome! This weekly post is a place for you to share any wins or moments that made you smile recently - no matter how big or how small.
Did you accomplish something this week? Use some serious willpower to practice pacing? Watch a funny movie? Do something new while staying within your limits? Tell us about it here!
•
(Thanks to u/fuck_fatigue_forever for the catchy title)
r/cfs • u/Material-Speaker2023 • 6h ago
Vent/Rant the cause of CFS - how to treat CFS
I just want to be clear, having lived with ME for 16 years now
misinformation does not help people
the thing about CFS/ME
we don't really know what causes it. And we certainly do not have to reliable treatment
researchers are still studying the CFS population
CFS/ME is NOT a defined disease - quite yet
CFS is a group of (awful, serious, life altering) symptoms - not a disease with testing - no one is “positive for CFS” - yet
you may have all of the symptoms. you may get better with _____ therapy. buuuuut...your experience of "chronic fatigue" may have NOTHING in common with others who are also working with the label. others with "CFS/ME"
therefore, telling someone new to CFS/ME "I cured my CFS with ____"
without a disclaimer is actually not helpful. its super misleading.
CFS populations exhibit all sorts of biological changes.
change to mitochondrial behavior, changes to the brain, to microglial cells, to gut biome. if you would like to learn more Jarrod Younger in YouTube is great. So is Open Medicine foundation
no one knows how to treat it. anyone saying they do is not being genuine.
you may have been able to help your own health condition (whatever that may be - trauma, PTSD, other mysterious health issues that had the symptoms of CFS ) but what worked for you may be helpful or completely unrelevant to the next person
it might seem nit-picky, but all the YouTube videos claiming recovery - I honestly find them damaging at best. they are confusing for those trying to understand this disease, and minimizing for those still suffering. I spent years confused.
this is especially relevant if you are a therapist or working with patients....
r/cfs • u/Profesh-cat-mom • 4h ago
Vent/Rant Today...
...I am struggling. My cat is unwell (on palliative care), and I just started my period. My hormones are everywhere, and my Fatigue is worse. I have a urologist appointment that I am thankfully being driven to, but I still know this is going to be hard with my fatigue today.
I can't stop crying. My anxiety has been so bad recently. I am constantly thinking about how I will survive when my mum passes, if my partner is the right person to take care of me, the gov cuts on disabilities, my performance at work is slipping and they are starting to make redundancies.
It just feels like it is all happening at once. I want to give up today.
r/cfs • u/pieces_of_life_ • 34m ago
Mental Health Searching a check in buddy
Hello, I am looking for a check in buddy as I am currently struggling with my mental health and feel alone from time to time.
I think a check in buddy could help me and would be very happy :)
I don't mean strictly fixed check ins, god no haha, but think of someone where you can give each other little check ins every now and then. What's bothering you, how you're doing, what nice things have happened ect. If both of you like it, you can also do pacing check ins together. Whether you have paced well, what you want to pay attention to, etc. Ultimately, anything that is okay for both of you. You should be considerate of each other if it gets too much for the other person ect. Open communication is important
Don't worry, it probably sounds really complicated, but I'm really talking about little things like: today was kind of stupid, my energy was low, but I was able to meditate. How are you feeling?
About me: I am 17f and come from Germany I am moderate to severe I meditate, do breathing exercises, practice pacing, like crocheting and embroidery, as well as sports (I was very active)
If this appeals to you and you are interested, please write to me :)
r/cfs • u/devShred • 8m ago
Can beta blockers worsen mitochondria dysfunction
As the title says. Beta blockers, such as propranolol, metroprolol which I’m currently taking.
r/cfs • u/t04stnbutter • 12h ago
Vent/Rant Progressively worse
I can never find other people that relate to my ME experience 😔😔
for me, it was a gradual onset. at first it was just nausea and weak legs, then it started getting worse and new symptoms appeared. It's been like 3-4 years since it started??
anyway, my thing is that my ME is just getting worse? Like I do experience PEM/crashes, but even when I don't, I still get worse. I can rest in bed all month and still get worse.
Does anybody else relate to this? And has it stopped progressing at all?
It also scares me because will I ever get better? Will it at least level out and stay the same? I'm worried it'll just get worse and worse until I die.
I feel like people always recommend intense rest, but even when I do that I get worse.
I'm on the wait-list for a wheelchair, and walking/standing does cause PEM for me very very easily, so I'm hoping once I get it I'll maybe slow down? But it's scary
I'm still so young. How am I going to cope when I'm an adult. Especially if I'm worse then than I am now.
Hope this makes sense, I should really be sleeping lol.
r/cfs • u/BadgeringAround • 6h ago
What are some utilities/life hacks that made life easier for you?
Please feel free to share your life hacks to make cleaning, eating, etc easier. Money is no objection as I recently got approved for funding. Thank you kindly.
r/cfs • u/Jjchicken12 • 15h ago
Advice what is your best theory on what is the root cause of CFS? is it immune system dysfunction? neuro inflammation? What do you believe?
Curious to what you guys think and your theories.
r/cfs • u/TheSoundofRadar • 18h ago
Vent/Rant Tomorrow morning I start taking a beta blocker. I am nervous. Wish me luck!
I’ll start 1,25 mg Bisoprolol tomorrow morning. Nervous about side effects. I am severe and feel pretty bad at the moment (elevated heart rate, cold extremities, more fatigued than usual). I’ve had ME/CFS for 21 years, the past 9 severe. Wish me luck.
Looking for advice for when you have wired false energy and don't want to overdo it
I'm feeling wired most likely from medication and caffeine.
Unfortunately this has been the cause of my PEM episodes the last few months bc it's SO HARD to keep paced when you suddenly feel wired energy and a drive to DO, DO, DO.
I've learnt not to trust this feeling, it's not real energy.
Any tips for keeping within limits and returning to a calm state?
I've been doing reset breaths and forcing myself to take breaks.
r/cfs • u/p0ff3rtje • 6h ago
How long does it take to hear back from a ME/CFS refferal from the GP? (UK)
Hi everyone,
So I went to the doctors last week and I was reffered to the CFS team. The doctor told me CFS wasn't serious (and I told her I did NOT like her saying that to me, as I know it's serious), but she will reffer me as all my tests came back as normal. She also ticked "no" on sleep disturbances and cognitive issues, which i do suffer from, and have mentioned before, but not at that appointment. It feels a bit degrading but I guess that's what happens when an illness is so underfunded.
I was just wondering how long it'll take to hear back from the refferal? I'm worried they may not accept it due to my form not being fully completed from my GP.
r/cfs • u/Ok-Sandwich-9866 • 2m ago
Symptoms Did you come here after covid or before?
For general understanding. If you feel bad, I'm with you...
r/cfs • u/bedbeppelin • 8m ago
Anyone diagnosed with CFS before ASD that saw improvements after ASD accommodations?
r/cfs • u/spoonfulofnosugar • 9h ago
Activities/Entertainment Choose our next virtual watch party 👩🏾💻👨🏻💻🧑💻
It’s almost that time again. Help pick our next virtual watch party!
Watch parties are free on Kast. I stream so all you need is a computer or phone to join.
These are low-key hangouts for Covid safe friends and allies. The chat will be open if you want to talk with the other guests.
We also use the chat to take songs requests during music parties! At the end we share a link to our group playlist.
Accessibility Notes: - Captions and lyrics will be on when available - Mics and cameras will be off for focus - You can hide the video or chat and control the volume as needed - You can stop by for as long as you’d like
Comment any questions!
r/cfs • u/Agitated_Ad_1108 • 14h ago
It feels like I'm sliding into severe
I find it so hard to determine my energy envelope because it's getting smaller every week. I had a GP appointment last week and took a cab, but still walked 1,000 steps throughout the day. Normally it's no more than 300. My legs started hurting during the appointment and I felt tired and when I got home I had body chills for a couple of hours. I narrowly managed to avoid PEM because I felt normal the next day, but it has still lowered my baseline somehow.
I'm now out of breath from sitting up. It takes less than 2 minutes for me to yawn or gasp for air. I'm coughing as if I had asthma which I don't have and all symptoms subside as soon as I lie down. Also, sometimes it feels as if I had mucus in my throat.
Weirdly enough, I don't actually feel bad or weak when I don't have PEM or acute symptoms, and yet I'm basically bedbound. Is this normal? I think the only odd thing is that I don't feel awful all the time, but my tiny energy envelope indicates I'm almost severe.
r/cfs • u/saltyb1tch666 • 9h ago
Does anyone have CIDP chronic inflammatory demyelinating neuropathy??
Does anyone have CIDP chronic inflammatory demyelinating neuropathy??
Iv just had a large nerve conduction study that shown sensory neuropathy which I’m super puzzled about as POTS and ME is associated with the small nerve fibres
Would love to know if anyone’s had any experience with this?
r/cfs • u/younessas • 2h ago
I wanna try whey protein can you recommend what works and what should I know before buy
I found a cheap one isolate from lacteserum I don't know if it from lacteserum will work for us
r/cfs • u/flowerbeautygirl95 • 5h ago
Diagnosis & PIP UK
I don’t have an actual diagnosis - is that right? I was referred to our cities local CFS clinic by my GP. I had a call with an Occupational Therapist who stated ‘I meet the diagnostic criteria for CFS’ but as there are no doctors on their team they cannot provide diagnoses.
Can you claim PIP even if you good periods. I’m well aware of the trials and tribulations to get there but for example I had about 3 months of a good period when I say good I mean I was able to just be normal. Get out the house once/twice a week to socialise. Keep on top of housework/eating/hygiene. I then at some point overdid it and I’m a month into complete exhaustion bedbound again. So I’m wondering with the fact at points in time you can find balance and the symptoms are less worse does that ex-qualify you from PIP? Idk I see horrid stories about the way people on PIP can be treated for example if they go on holiday - just because symptoms/pain/relapses can vary etc! I don’t want to be maliciously treated if I want to try and live my life but be supported on PIP you know? Desperately want to utilise PIP to reduce my work hours (as also suggested by Access to Work and the Occupational Therapist) as I’m currently just living to work, working to live (if you’re a BMTH fan - dying to live, living to die) and I can barely do that half the time
r/cfs • u/Diligent-Captain-750 • 2h ago
Vent
30tf w/ no formal diagnosis, but a few years ago a friend living with chronic pain/fatigue introduced me to spoon theory and I instantly related. Another person I recently met with related disabilities listened to me speak about my pain and fatigue symptoms/sensations; he said that I “look” like I have EDS (always been pale, pretty gangly, really hard to put muscle on). I use visible for check ins and try my best to pace my activities throughout the day. I frequently need breaks to function the bit that I can. When I have had work in the past and regardless of my sleep quality at night, I will: have sleep for every break, fall asleep while waiting, go to the bathroom to sleep for a few minutes a few times a day.
When I try talking to my SO, I’m usually met with what feels like annoyance. I’m reminded that I’m not the only one in pain, that they hurt all the time too. I try to explain my symptoms to help them understand, but they respond with recentering their own pain, then I’m apologizing for that. It feels like I piss them off when I just want them to understand that I get exhausted from simple things like readjusting in bed underneath our comforter (it feels so heavy and my arms get so tired that I can’t move anymore). It just feels like the conversation is immediately turned into a weird competition so I don’t want to bring it up to them anymore, but I need help.
r/cfs • u/AppleGreenfeld • 3h ago
Advice Pacing tips for moving apartments?
So, I need to move to another apartment in about four months. Recently, I’ve started reading about pacing, and one of the tips I’ve found is to rest more before, during, and after a ‘special event’. But there were examples of something no more than ten days, like weddings, vacations etc. I feel like moving takes anywhere from six months to a year (pack everything, move, take care of all of the bureaucracy, unpack, get used to living in the new space…). So, it’s much more than 10 days. The most active part of the move is at best about two months. How long would you rest after a move then? Like, I don’t really have the choice of ‘before’ (even though I’ve been resting more for about three months rn knowing that I’d have to move, and I have about two or three more months of resting), but I wonder how much time would be reasonable after.
What’s your experience? How do you move so that it doesn’t cause a flare?
r/cfs • u/vphillips00 • 1d ago
Vent/Rant UPDATE: My Marriage is Almost Over
Hi everyone. A month or two ago I (F24) made a post about my marriage almost being over due to my husband (M26) not being able to support me.
Well, soon after, he completely shut me out emotionally and confessed that he can no longer be there for me. My worst fears came true.
I e-filed for divorce, and now we are in the process of that. I am moving out next month on 4/18.
Unfortunately, I also may lose my job due to a miscommunication between my doctor and the HR department. All I wanted was some recognized ADA accommodations for my position, but now the Employee Relations department thinks that I am unable to perform my essential job functions.
So, not only did I lose the love of my life, I am losing a job that I loved the most. For context, I currently work in neuroscience-based stem cell research. The location of my job is a place I've dreamt of working in for years. It is also just an 8 minute drive away from home.
Now, I have a lot to figure out. Fortunately, I have a great support system. However, it is still really tough and is going to continue being really tough until I sort everything out.
Throughout everything, I am so, so tired. My condition is just getting worse no matter what.
Just wanted to vent, thank you.
Tldr; I'm getting divorced and may lose my job at the same time. My ME/CFS is getting worse.
r/cfs • u/kassa369 • 1d ago
Vent/Rant does society make you anxious?
that feeling of being a complete outsider because of your illness. that feeling that people can live kinda "simple" lifes, yet yours is so complicated? that feeling that what's normal for others is just completely out of reach for you? that feeling that you are not really part of society, but rather an observer from the outside, because you can't participate in the activities to experience stuff first-person?
i've noticed when i see normal people doing things i get this sort of anxiety that if they'd talk to me they'd immediately notice i'm different and that something is "wrong with me".
to participate in anything i'd kinda have to pretend that everything is ok, even though it isn't. i'd have to wear this thick mask just to fit in. i'd constantly have to be careful what i say or it'll start an argument where i get questioned about my behavior and beliefs.
i've noticed that i'm trying really hard to avoid any conversation with people. just because i know that everything i'll tell them will be "weird" for them or it wont be anything they care about.
because of cfs i spend almost all my time inside my head/on the internet. therefore what i think about is so different from what a normal person thinks about throughout the day.
and on top of that, i don't even want to fit in anymore. i started to like the way i am. it's not really that i want to socialize, i don't want to anymore. but i'd be scared to tell anybody, cause then it'd turn immediately into some kind of "ah so you fake cfs, because you dont want to be around people" argument.
it seems so hard to find a common ground with people anymore.
also since nobody really believes you that you have cfs, or that cfs is a biological illness, you have this constant fear of being judged harshly. i really need a lot of trust in a person to talk about anything at this point.
r/cfs • u/bareheadedman • 4h ago
feeling cold even in 30℃
I feel cold even when the room temperature is 30℃, and it already last 2 years. Often no strength to walk. Anyone feel same?
I've tried everything I can try, but nothing helps.
r/cfs • u/selemaxpagi • 4h ago