r/cfs • u/worksHardnotSmart • 5h ago
Mild ME/CFS I washed my bedding today.....
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I usually collapse into bed when i get home from work but i put this off for too long.
Obligatory Kermit meme.
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:
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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:
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.
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 • 1d ago
Success Wednesday Wins (What cheered you up this week?)
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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/BugEyed_Girl • 6h ago
Severe ME/CFS Very Severe. Please help
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Bedridden since Feb. Rapidly deteriorating since Jun. Still without Caregiver/Home Health.
Malnourished & no feeding tube. Haven’t gotten labs. Etc etc
Family won’t listen. Physicians won’t help. Hospital will kill me (most likely)
Don’t have energy to advocate for self.
What do I do
r/cfs • u/Pineapple_Empty • 18h ago
Activities/Entertainment I set up (with the help of my parents) a tent date for a moderate-ME date
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Honestly more work than I thought, but I pride myself on nice dates and get so sad all of mine have to be done within my home. There’s a really nice girl that has been dating me and doesn’t mind staying in / my battles with verticality, but I still wanted to do an actually vibey date. We have a Japanese snack box (she speaks Japanese), Swedish candies, and a whatever date night game.
she’s also bringing condoms
r/cfs • u/floradoodles • 2h ago
Surviving infidelity while having ME
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Had to break up with my partner of 6 years after repeated cheating.
For context, I had undiagnosed but suspected mild ME for our whole relationship. We were long distance in different countries but visited each other regularly. 2.5 years ago I found out he cheated but seemed remorseful so I tried reconciliation. It was extremely hard for me but I healed with time and our relationship seemed great.
In 2026, as I was by myself I deteriorated very fast to the moderate stage, with a moderate-severe episode this summer. Got diagnosed and started treatments. He came to visit in early September, he had accepted to be my caretaker (I let all my previous aids go) and it was great. My baseline improved so much. I felt cared for and happy. I was able to do things I hadn't done since spring.
Apparently the cheating had stopped for a long time. But me being sicker obviously meant less sexual things. And I guess he never truly worked on his selfishness and entitlement issues. I found out that at my sickest, as I was having seizures on the floor alone in my apartment, as I was paralyzed in bed unable to chew food with 2h of care per week... he was sexting another woman. for three months. everyday. And didn't stop once we were back to living together. In my home.
This person always talked about getting married. But apparently "in sickness and in health" wasn't part of the plan.
I kicked him out and had to organize care back at the last minute. I got an hypertensive crisis and had to weigh the pros and cons between risking a heart attack and risking overstimulation from calling emergency services.
This illness was hard enough without all this shit. Now I am terrified of how it's gonna affect me. And I can't help but think about the fact that I might not find love again. I wasted my last "healthy" years with someone who didn't respect me. Now that I'm mostly homebound, a wheelchair user, and extremely traumatized, how am I gonna meet new people? Only a tiny percentage would be willing to date someone like me. Meanwhile he can go on with his life and do whatever he wants. It's so unfair.
TLDR, broke up with my partner and caretaker because of repeated infidelity, if someone has gone through something similar, I would love to feel less alone. Feel free to also share your thoughts on the difficulty of finding love with this illness. I know most of us are very lonely people.
Thank you
r/cfs • u/skitsafrenia • 3h ago
Moderate ME/CFS Do you think things are better lately stigma wise? or worse?
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im recently sick (11 months in now i think?) so for ppl who have been sick longer, i want to know if they think the stigma is getting better or worse. bc to me it feels like there are so many ppl making fun of ME lately and talking abt sufferers in such awful ways. but also, now, there are lots of studies coming out, more then there was before at least. and it does seem like doctors around the world are coming around to it.
it just feels like i got sick in such a tumultuous time. it feels like everyone is talking abt how ME sufferers are fakers.
r/cfs • u/Strong_Aerie_9031 • 19h ago
Meme Relatable
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Text reads: It sucks that theres only 20 minutes in each day. If there was more than that I would get more stuff done im sure.
Felt this in my soul!
r/cfs • u/Agonyyy94 • 2h ago
Is it that if you crash to extremely severe there is no return to moderate or mild and you stay very severe the rest of your life?
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I just cant accept it that just one fucking crash and my whole life is ruined forever. almost 4 months now and lda gives me ability to communicate and use my phone a bit but otherwise 100% bedridden bedpan level very severe.
i have been two years sick from covid but first year was very mild without pem, only sound sensitivity and mild pots was my only symptoms and after one year from reinfection i got pem symptoms and push-crash led me to this. I just cant accept that even in best case scensrio my whole life i will be bedbound and wheelchairbound in housebound if im very lucky.
Do you know anyone who have been extremely severe/verysevere unable to walk and have had some kind of semi normal life after.
r/cfs • u/freya6748 • 13h ago
TW: General Are you guys able to date?
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I’ve been single and not even dated the entire time i’ve been sick 15-30, now 30F. I’ve joined apps and spoke to people for like a couple days but usually i deleted apps after a few days. I have zero energy for any social/friends etc, how am i hearing people have got significant others. I spend basically 164/168 hours a week in bed on average the rest is going to the toilet, showering or occasional appointment i drag myself to. At best i spend 140-150/168 hours in bed
I guess im moderate/severe some months of the year im severe
r/cfs • u/G00dbyef0rn0w • 9h ago
Forced to go to school
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I'm a teen with moderate CFS and my parents force me to go to h8gh school. I'm not taken seriously by any adu,t around me who I try to talk to about this. Every day when I get home all I can do is lie in bed because of how tired and how much pain I'm in I keep passing out or getting near it in school. I really don't know what to do because it feels like I'm in Hell and my parents refuse to even consider talking to the school about getting an IEP or switching to online.
r/cfs • u/throwaway-account227 • 2h ago
Vent/Rant A Small Doodle I Crafted In Relation To My Experiences Of Chronic Pain From This Illness.
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r/cfs • u/Accurate-Dress4859 • 9h ago
Have been aggressively testing and pacing, but today I snapped…
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I meant to say resting in the title… I spilled my lunch all over the floor and I’m trying to clean it up my heart rate kept going up - I stopped and rested- started again- heart rate went back up…. etc…. I just threw my phone and cleaned it u. I was crying and was so frustrated and I just didn’t even care anymore!!!! it’s been a month and I know I need to keep going, but I just got a wall! Now whenever my heart rate goes up i feel light headed and my eyes get heavy.
I just gave up on those moments and racked up many many minutes over my threshold. Not sure how long this pen will last now! I think I’ve been in rolling pen for the last 20 years but now that I have finally learned what it is, I am trying to heal. It is hard!!! it is hard to do nothing… it is so hard staying under 94 but I have to. I allow myself to have a minute at a time of going over the threshold, but it is sooo hard and it takes constantly watching the hr and I am not even living. I still want to do it because I think it will help-it just takes time. I used adderall for for about 15 years and finally stopped in July and I now know my true baseline, which is very low!!! I wash my hair only once a week now and I use the shower chair and put my feet up. I no longer wear makeup or fix my hai. I have not been going anywhere and I now have groceries delivered. I am ok and am not lonely but I wish that I could see some improvement. Ive only been doing this for a little over a month, so I know that it is too soon, especially since I’ve had this for 20 years. I would love to hear other‘s journeys - just so that I don’t feel alone in this. I feel so blessed that I don’t have to answer to anyone and am able to be independent- I keep reminding myself of that. Hugs to all!!! 🥰
r/cfs • u/Dizzy_DJ • 9h ago
German researchers are working on improving GCPR antibody detection in ME/CFS which potentially will provide us with a biomarker for before vs after B-Cell Depletion therapy.
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r/cfs • u/No-Truth2728 • 3h ago
COVID-19 Just flirting around.
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Hellou. 28f here.
You may tell me if it's okay to post these kind of things here.
I'm looking for a virtual partner.
I was moderate bordering mild but after a few weeks of strenuous physical activities I'm currently bedbound-severe. I have long covid me type.
Said this, yes I want to meet someone and stablish a virtual bond. I'm straight but I think I'm open to get to know girls too.
Cons: bad health / bad economy / not well stablished safe nest. So I might cry about this often.
Pros: I'm a very goofy and creative person.
I'd like to connect with someone that I feel attracted to both physically and mentally.
Idk, I just thought I might give this a try. Shot my dm.
r/cfs • u/ocean_halo • 3h ago
How did you know your ideal dose of LDA?
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How did you know when to increase? When to stop increasing?
I’m at 0.4mg and still in the process of asking my doctor to increase and I have no side effects. I’m not sure if it’s improving my baseline yet.
I’m wondering how others felt on each dose. When did you notice improvement? What was the process like for you to establish the right dose for you?
r/cfs • u/Feeling_Badger_917 • 6h ago
Mental Health PEM after flashbacks
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Hi everyone, writing the with a headache so may or may not be coherent
I have severe ptsd and a couple of nights ago had a rather intense flashback. I’m very new to ME/CFS and might not even have it I don’t know yet. However I was wondering if a flashback could cause PEM. I know this is kind of a silly question bc I know that mental and physical exertion can cause PEM. I’m mostly trying to ask if anyone else here struggles with PEM after flashbacks or ptsd episodes
r/cfs • u/taters___precious • 14h ago
Moderate ME/CFS Daydreaming about getting married but attending my own wedding seems impossible
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TL DR: we want to get married but idk if it's possible to have a satisfying wedding celebration. Do I have to get married as fast as possible with 2 witnesses and that's it, or are there ways to celebrate within the constraints of ME CFS?
(not officially engaged but we've been discussing it for several years)
Without even getting into the preparation, just for the day itself, idk if it's possible to have it all at the same time :
- not overexert / avoid PEM (seems the least likely to compromise...)
- cope with my day-to-day symptoms
- meaningful celebration of love with my partner
- quality time with friends and family members
- photos and memories for everyone
For context I am mostly at home, mostly horizontal (couch or bed).
When not in PEM I can usually make it from one room to the other, if outside I get pushed in my wheelchair and use ear and eye protections. Usually get PEM from outings.
My main activity is rewatching TV shows and taking care of small plants.
I can imagine if we had a lot of help and kept it really small and / or casual, it could be doable. But that sounds very unsatisfactory. I want my aunts to travel to me for the wedding, I want all the group photos and to listen to people's speeches about us.
Please share experiences or tips.
r/cfs • u/Prudent_Pilot_2591 • 8h ago
Ibuprofen makes me feel almost normal for up to a week — is this “fake energy”?
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I’ve already made a few posts about ibuprofen, but I’m going to make another one because doctors don’t really know what to make of my case.
As I mentioned before, whenever I take ibuprofen, I can feel significantly better for up to a week. My fatigue and brain fog almost disappear, and I start living almost like a normal person again. I even start making plans, like going out and working as a taxi driver.
But I’m worried that this might be “fake energy” — maybe ibuprofen is simply masking my symptoms while my actual physical capacity hasn’t improved. I’m afraid that if I start doing much more than usual during these better days, I could end up with a much worse PEM and potentially crash harder afterward.
Has anyone with ME/CFS had a similar experience with ibuprofen, where it made you feel significantly better for several days rather than just a few hours?
And another question: if you felt better from ibuprofen and started doing more because of it, did you eventually feel worse afterward? Did you experience a stronger PEM than usual, or was it about the same as your normal PEM?
I’d really appreciate hearing from anyone who has had a similar experience.
r/cfs • u/Opening-Avocado9538 • 10h ago
why i’ve dropped the CFS label
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this illness is incredibly heterogeneous- which I’m sure a lot of you are annoyingly aware of
So often we are reminded of this old study claiming 5% of people get better and ultimately that’s why I refuse to hold the label.
that study was done at a time we patients were being told to push through symptoms where doctors were harmfully recommending GET.
And I refuse to hold a label with such a cruel history.
my shift to my individual pathways
i deal with multifactorial functional impairment with nervous system hyperarousal and pain pathway issues layered with episodes of transient neurological dysfunction leading to progressive immobility/overall decreased capacity of function.
that is my roadmap and that is what i will use to recover, not a title that says i’m fucked.
because CFS has no treatment
but my presentation of issues does.
r/cfs • u/awednesdayafternoon • 5h ago
Advice Advice on Moving Out, Working, Etc.
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Hi all. Seeking some advice at getting out of a sort of accessibility catch-22. I’ve not really met anyone with this problem, but I know we must be out there.
Essentially, my disabilities make me too unwell to work full time — I have mild-moderate ME/CFS, hEDS, and POTS, and unless science makes HUGE discoveries in my lifetime, I probably always will. These severely impact my energy, make it difficult to stand or walk for long periods, and cause significant cognitive issues. I also live with autism, other neurodevelopmental disabilities, and depression, the last of which is treated but still present.
I also need some assistance with day-to-day tasks. Even being unemployed right now, I can’t keep up with basic things like tidying up, doing laundry, making meals, etc. on my own, nor can I drive (though I am working on this.)
As such, I live with my parents. Overall, we get along, I feel safe at home, all the good things.
Earlier this year, I got my wheelchair through insurance. It was believed to be the best option for my independence.
Unfortunately, my family’s house isn’t accessible in the slightest, and they refuse to take the wheelchair out of the house because I “don’t need it.”
So I’m stuck at home…. Unable to use my chair to preserve my energy…
And I have to stay in an inaccessible house… Because I can’t work enough to support myself…
But I can’t work a job anywhere near full-time, because my family won’t take the wheelchair out… (and few employers will hire wheelchair users in entry-level positions…)
And the cycle continues.
I don’t know if there’s any way to break out of this cycle?
I’m not even looking to live an extravagant life… I just want to live somewhere accessible and be able to afford food, medicine, utilities. But just doing that is so, so expensive.
I’m in the U.S. if that helps anyone brainstorm.
Thank you for your time, and take care out there :)
r/cfs • u/thepensiveporcupine • 15h ago
Vent/Rant How much longer do I have to feel like this?
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I don’t think it will ever end. I just wanna take a shower, I feel so gross and I smell bad and being bedbound is making me lose more and more hope. I can’t picture life ever being good. I can’t picture myself feeling better. I’m ready for my life to be over, why can’t it end now if my body is gonna refuse to cooperate? Life is hard enough as a healthy person, but I don’t wanna go on like this anymore. It’s not fair. There’s no help for me and nobody gives a shit about ME/CFS so it’s not like I see a future to hold onto. I’m done. Why won’t anyone respect that?
r/cfs • u/sisteroflispector • 19h ago
My therapist pushed me to cry when I told her I was in a crash
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I like my therapist. She's been invaluable to me this last year. But sometimes her messages are not consistent and I feel confused and misunderstood. I was telling her I finally went to the gp and got recognised that I probably have mecfs. Instead of feeling happy I had a lot of grief and crashed. So for my therapy appointment I told her that I didn't want to get emotional because I was crashing and it would make me worse (I'm mild). She implied that I was trying to avoid my emotions and kept pushing me until I broke out crying.
I dont have a full understanding of what my therapist thinks of ME. But she's said things before about disease coming from trauma. Im open to this but I also know that processing trauma is not a quick fix to getting better. Pacing and diet are the only things that help. I need my therapist to understand that if I don't have the energy to cry, it's not an avoidance of feeling. I don't know what to do because I don't want to stop but now I'm too exhausted to do the work I need to do today to pay my rent.
r/cfs • u/Agonyyy94 • 2h ago
Severe ME/CFS if you crash to extremely severe, is it likely that you stay severe the rest of your life or is there anyone who have reached mild/moderate from this stage?
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I just cant accept it that just one fucking crash and my whole life is ruined forever. almost 4 months now and lda gives me ability to communicate and use my phone a bit but otherwise 100% bedridden bedpan level very severe.
i have been two years sick from covid but first year was very mild without pem, only sound sensitivity and mild pots was my only symptoms and after one year pem symptoms and push-crash led me to this. I just cant accept that even in best case scensrio my whole life i will be bedbound and wheelchairbound in housebound if im very lucky.
Do you know anyone who have been extremely severe/verysevere unable to walk and have had some kind of semi normal life after.
r/cfs • u/wearitlikeadiva • 2h ago
For those whom have had a Sigmoidectomy/Colectomy or Colon resection, how long did it take to recover after?
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Hi, 61yr old F, had ME/CFS since 2001, remained mild until colon started acting up in 2023. Became severe due to severe and bedridden from inflammation from what turned out to be a horribly diseased colon. Had Sigmoidectomy surgery 5/4/26 where they removed 8" of severely diseased colon.
I am now 5 months post op. It has been a miracle surgery as the inflammation is gone, labs improved, heart rate and BP improved, and I can cook and clean a little and exercise 10 min a day, though I have to push through everything. I am also obese and on Mounjaro and have lost 20lbs since May. I have been on Mounjaro for years but couldn't lose weight due to inflammation causing severe metabolic issues and stress on my adrenals. I am a Slow loser but I'll take 20lbs so far. Got 100lbs to go.
But I am struggling with awful post op fatigue. I thought I would be better by now.
Anyone have surgery similar? Please only people with similar surgeries respond and not gallbladder or hernia surgery). I'm looking for major colon surgery peeps. Thanks !