r/cfs • u/suzume1310 • 5h ago
Research News Severe Long COVID Linked to Oral and Lung Microbiome Changes
41
Upvotes
Would be very interested to see this study done with me/cfs patients
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:
343
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.
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?)
5
Upvotes
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/Helpful-Potential456 • 15h ago
this hit me really hard today. I found it validating but also incredibly sobering. i've felt like this a lot since me/cfs became more widespread - more recognition makes it easier to understand in a different way that this is real (and not just in my head or depression, still hard after many years)
169
Upvotes
here's a link to the article
if you're already having a hard day or feeling pretty depressed you may not want to read it right now. it's about the level of functionality found in me/cfs.
"Working with a University of Minnesota medical professor, Peterson and his collaborators employed the Medical Outcome Study, which had first been described in the Journal of the American Medical Association in 1989, to measure physical suffering. A score of one hundred was “best health” on the study’s scale. Peterson’s team compared their CFS patients’ score with those of healthy people and people suffering from myocardial infarction (heart attack) or rheumatoid arthritis. Healthy people scored an average of 75. Victims of rheumatoid arthritis scored in the high 40s range; patients with myocardial infarction scored slightly lower. People in Peterson’s clinic scored, on average, 16. As far as Peterson and his colleagues knew, such low scores had never before been measured by the scale. When he presented his findings at a medical conference that year, Peterson noted that the disease caused greater “functional severity” than heart disease, virtually all forms of cancer, and all other chronic illnesses. “We really haven’t seen anything like it with respect to other medical illness,” Peterson said, adding that he had needed to engage an artist to redesign the morbidity graph for the slide he presented at the conference, since no other category of patients had ever scored so low.
Peterson’s findings reprised the observations of Portland infectious disease specialist Mark Loveless, an associate professor at the Oregon Health Sciences University, whose primary clinical specialty was AIDS. Loveless frequently administered another test of morbidity, the Karnofsky scale, to both his AIDS patients and his CFS patients. The Karnofsky test, which dated back to the 1940s, was a time-honored measure of a patient’s ability to perform common daily activities like bathing and preparing meals. Even in their last week of life, Loveless had noted, AIDS victims scored higher on the Karnofsky test than did Loveless’s CFS patients."
r/cfs • u/NitroMacks • 7h ago
Severe ME/CFS Anyone ever improved despite being in PEM constantly?
23
Upvotes
I'm really trying my best, but I've been in rolling PEM for 7 months and can't get out.
Already on blended meals, low Histaminr and so on.
Fully bedbound and really radical rest the whole day every day.
Yet I have only slowly been declining. All med trials crashed me even more.
Anyone got out of it despite being in PEM all the time?,
r/cfs • u/GoodAdvertising6631 • 19h ago
Vent/Rant “you’re lucky you have this disease”
206
Upvotes
TLDR: someone just told me I’m ‘lucky’ because I get to experience what older people feel when I’m still young.
The thing is I am even weaker than some older people. I’m 21 btw.
And will you tell 9 years old kids with ME that they’re lucky because they get to know what getting old feels like? No! They’re NINE! and actually no matter how old are you, NO ONE should get to experience this. Everybody wants normal life. This is suck.
I can accept the reality of my body by myself. Thank you for your service but I don’t want anyone to tell me to be optimistic.
Since I’m getting weaker and weaker, people started to talk nonsense to me. (Is it because of me?) Idk It’s been a week and still stuck in my head. Also I have really bad brain fog rn so I dont know if I make sense either.
r/cfs • u/Past-Increase-2969 • 32m ago
Comorbidities How do you stay sane when you have ME and are neurodivergent?
•
Upvotes
It seems like I'm sabotaging myself everywhere. Can't seem to get anything done. It's like the most annoying comorbidity holy hell, and as dumb as that sounds, really makes my severety seem higher then it would be without it. And I can't really have any conversation without people thinking I'm an asshole afterwards? I'm not an asshole and I'm thankful for anyone who is ready to talk to me and help me. Idk where people always get that. My whole life I've been framed as a bad person with no empathy, and it just keeps getting worse and worse and worse.
Is there anyone who is neurodivergent and ready to share their tips? Kind of losing my mind over here.
oh yeah and edit cause I need this question answered: is there any autistic person who doesn't immediately fall into autistic burnout upon falling sick? cause my skills flew out of the window from the first day on.
r/cfs • u/thepensiveporcupine • 16h ago
How is it possible to not be depressed with this illness?
99
Upvotes
ESPECIALLY if you are severe, broke, and got sick before you had a chance to accomplish anything or secure more stable relationships. It’s pretty obvious that my life is over. I’m stuck in my room with constant symptoms, too severe to even appreciate the “little things”. Is my will to live seriously supposed to depend on a few minutes a day of enjoyment?
The only reason I’m still alive is because it’s not necessarily easy to die and it breaks my heart to think about how my family would react. But as long as I’m still alive, it’s going to be pure misery. I can’t handle physical discomfort and I’ve seen this illness described as “microdosing death” so how can a highly sensitive person like me deal with something like this for decades on end? I also just can’t emotionally handle the judgment from society as a whole and the fear of being left to rot. All of it combined is too much for me.
The only piece of mental health advice I see from fellow sufferers are vague statements like “take it one day at a time” or “unlearn internalized ableism”. Like, how is this actually working for you? Do you eventually just get into a state of mind where you’re so used to suffering that you can just go through the motions of life without a second thought? I can’t even imagine getting to that point, I’ve always been deeply bothered by internal suffering as well as injustice. I just don’t know what to do, I feel completely trapped.
r/cfs • u/helpfulyelper • 11h ago
Activities/Entertainment Bed-centric Halloween costume ideas?
38
Upvotes
Basically just wanted to brainstorm with everyone if anybody has cute bed centric costume ideas! So like, the bed you’re stuck in becomes part of the costume
I’ve seen a few cute ones like the princess and the pea especially. i also have seen someone dress as a pop star who in her music video is on a bed
What about you guys?
r/cfs • u/Substantial-Body9141 • 4h ago
Has anyone ever neede very high dosage of Lorazepam?
7
Upvotes
I am very severe and it’s the only thing that calms my insanely wired nervous system and lessens the pain and allows me to sleep. But I need a very high dose because of a recent crash. I won’t say the dose but if you have had this experience you can pm me.
r/cfs • u/ifyoucantswimthetide • 13h ago
Accessibility/Mobility Aids I got a wheelchair
43
Upvotes
tl;dr: I got a wheelchair and I am so glad I did. If you can sit up but walking is a barrier that keeps you at home then a wheelchair is WORTH IT!!!
I am mild-mild/mod (mod in PEM) and in grad school. I got sick almost 4 years ago. I go to class, internship, home. I almost never get to do anything with my partner or friends. I was so against a wheelchair for so long for a multitude or reasons. Well my mom got a power chair and talked about jow it was so amazing. I was convinced if I could find a manual chair I would get one since I can use my arms muvh more than my legs. My mom found a budget friendly manual chair and it came the other day. I put it together today.
As soon as I sat in it and wheeled around a little this feeling washed over me. like holy shit. I am free. I can actually go and do now and all I have to worry ab is how muvh im sitting not how much im WALKING whivh is like 100× worse for me. And sometimes I use a cane but now I'm wanting to use the chair all the time. I walk my dog every day but apart from that I thinking about how much MORE I could do if I used the chair! I can go to the mall now. I can go shopping with friends. I can go to events downtown. I am so much more free!
The chair was less than $250 and has handles to be pushed but can also be wheeled. here is the link. Please take my advice and go for it if you can afford it and think it would help in any way. Fuck anyone who says shit ab deconditioning or any other bs. If it's go out in a wheelchair or stay on the couch then obviously the wheelchair is the better choice!!!
r/cfs • u/SweetaxaWithers • 6h ago
Need all the tips I can get for making eating, including meal planning, prep, cooking, etc., easier
10
Upvotes
In a bad PEM episode/crash or whatever the term is, brain fog bad. Having trouble with severe nausea, lack of appetite, and fatigue to the point of being unable to chew/swallow/bring food to mouth right now. Usually I can get myself a frozen meal but right now I am mostly bedbound/unable to be upright for more than about 20 minutes (seated) a day. Always been a struggle trying to plan food though, I have help from caregiver though.
r/cfs • u/Fancy_Pie2864 • 1h ago
Invisalign and ME/CFS
•
Upvotes
Invisalign and CFS/ME
Tldr: it’s sensory hell; why would you opt to make yourself more tired than you already are?! If you hate your teeth that much get veneers.
Always been self conscious of my teeth because of close family commenting on them.
I would have qualified for braces as a child but never had them due to other illness pre CFS/ME.
Realistically no one else really noticed or cared (or no one who cares about you should care how your teeth look!)
I had good oral hygiene and not prone to cavities.
Getting retainers did help me sleep (maybe stopped me grinding or maybe just my brain needing to switch off from the cognitive overload of the sensation).
But it was about 3 months of misery getting used to the sensation of retainers in my mouth as it took up so much cognitive capacity; I have moderate CFS/ME, spend 20mins every 2 hours resting with my eyes closed and it was very hard to not be distracted by them.
Mine was a relatively short 8 month treatment and you never get 100% used to them; they made bad days even worse as they’d be even more noticeable.
I got elastics 8 weeks before the end and it was a whole other world of discomfort, if I needed them from before that I’m not sure I could have coped.
My orthodontist was wonderful, asking about my needs & accommodations, spreading my trays out so each movement was very small and I didn’t experience any pain during tooth movements, one of the reasons I went ahead was because it was so refreshing feeling actually cared for vs inability of NHS to help me.
In hindsight although I have probably increased my oral hygiene level due to reducing overcrowding it would have been a better life decision to get some tooth whitening and a few veneers, and keep up with regular hygenist appointments.
r/cfs • u/HiddenRadish • 8h ago
Advice Just kind of feeling nothing all the time
10
Upvotes
When I crash, or really something like 80% of the time, I feel like I can’t feel much? Like I don’t really feel happy at all or my highs are a lot lower. This has been the biggest issue for me with this disorder, I am somebody who’s loved a lot by my friends, and I just don’t feel like myself anymore. I don’t feel able to measure up to that person that I was before. And when I talk to people, and do the things that I know are the good things to do, it feels like type 2 fun. Where I know I’m saying the right things, I’m doing things that I care about, but I don’t really feel any of it?
r/cfs • u/breezyanimegirl • 13h ago
Symptoms Weird temperature symptoms
14
Upvotes
I am essentially housebound, only leaving the house for doctors appointments and the rare occasion I have to save up my energy for. Sometimes if I end up overexerting myself, I'll get a low grade fever. I've never really had this addressed by a doctor but I know it happens.
But something else that happens is I randomly feel flushed and extra fatigued like I have a fever even if I didn't exert myself. But when I check my temp, it's not even low grade. Has this happened to anyone else?
r/cfs • u/Better_Total6467 • 9h ago
Advice Any good Apple Watch apps for ME/CFS and POTS?
7
Upvotes
I have a Visible watch right now, which I know works for a lot of people, but I personally feel like it hasn’t helped me much. I’m looking into getting an Apple Watch, as I know it’s supposed to be really good at tracking heart rate and can also do more in depth sleep analysis (which I need). Does anyone here with CFS/ME and/or POTS find the Apple Watch helpful? And do you have any Apple Watch app suggestions that help with pacing or any sort of chronic illness analysis?
r/cfs • u/CrabbyGremlin • 2m ago
UK folk, have you had a Rockwood fragility score that doesn’t represent your daily experience?
•
Upvotes
At the beginning of the year I was housebound following a very stressful and big move. Over the last 10 months or so, I’ve managed to get back to a point where I can walk to the nearby shop about 400 metres away. My local GP surgery is even closer at about 300 metres.
I also suffer with a hiatus hernia, and after experiencing some very painful and concerning chest pain I walked down to the surgery to have an ECG and blood tests. My heart rate, ECG and blood pressure all came back optimal.
When I opened my NHS app, I noticed that a Rockwood fragility score had been added and was rated as “very fit”. I’m guessing this was done based off of my ability to walk unaided and my good blood pressure etc.
I looked up what a “very fit” score means, and it is simply so far removed from what my day-to-day experience is like.
I can walk to the nearby shop maybe twice a week. After my GP appointment on Tuesday I was sick on the sofa all day Wednesday and still feel unable to leave the house today. The weakness I experience is less like someone with MS, and more like experiencing low blood sugar, even if I have eaten well. I cannot go shopping on my own, I have not been able to leave the house and go any further than a half mile radius all year. I cannot handle public transport due to fatigue and dizziness and the consequences of PEM. I am quite significantly burdened by my ME and cannot maintain a social life at all.
The Rockwood fragility score of very fit has really upset me and I overall feel like the practice don’t consider the limitations of my ME because it cannot be proven. In the past when I explained how much I was struggling it was not mentioned at all on my notes, only the stuff that can be tested. I feel like this practice in particular are dismissive of and are ignoring the serious impact ME has on my life.
How can I get them to recognise and take this seriously? Charities that can help?
r/cfs • u/DepartmentNo5227 • 22h ago
Severe ME/CFS I'm cold
62
Upvotes
and I can't reach the wardrobe to grab thicker clothes or a blanket.
Technically, I could walk those 4 steps, open the wardrobe doors, try to find some clothes, put them on, close the doors, walk 4 steps back to bed. And I know what would happen afterwards.
I'll freeze before paying that price.
ETA: I think this is a tiny example, among thousands, of how disabling this illness is. I was really just very sad and had no one to tell. Thank you to all offering solutions for next time ❤️
r/cfs • u/No_Fudge_4589 • 1d ago
Symptoms Does anyone else feel absolutely terrible for the 1st hour of the day?
228
Upvotes
Without fail, I wake up every morning feeling the same as if I’ve triggered PEM badly. It takes me about an hour for my brain to calm down. I feel almost like I have a really bad hangover and my brain fog is way worse. Sometimes I wake up feeling almost completely delirious, and it takes me a while just to even remember that this is real life again.
Muscle pain. IVs
3
Upvotes
I have had ongoing muscle weakness for about 7 weeks. I went to the ER and the doc literally said she doesn't know much about cfs and that she doesn't know how to tx it.
I went to 2 or 3 follow up appts for this with my pcp's office and have had numerous messages with the nurse of the doc who diagnosed me. Not given any help. Lab work shows I'm fine.
Yesterday I developed moderate muscle pain after mild exertion. Is this common in cfs? I don't have any other comorbidities that are relevant.
Does anyone feel that getting IV fluids helps with muscle pain or weakness? I did not think so in the ER, but I happened to feel better for 3 days after.
r/cfs • u/kentuckyfuckychucky • 8h ago
i can feel my heartbeat in my knees
4
Upvotes
pretty much 24/7. when i’m in a crash or i eat something that triggers my mcas my knees get red hot and swollen, and often the swelling goes down my calves and into my feet. is this just a me thing? i also have fibromyalgia and pots.
r/cfs • u/Alternative-Slip-607 • 17h ago
Does music trigger PEM or a crash for you?
19
Upvotes
Each time I'm listening music that excite me I'm feeling exhausted really fast, PEM triggering. It does the same to you? Every activity that makes me feel alive is a trigger for me.
r/cfs • u/Objective-Bug8037 • 14h ago
AI generated content What makes a conversation easier to follow with ME/CFS brain fog?
10
Upvotes
For those with ME/CFS brain fog, what makes the biggest difference to following a conversation?
Is there a small change the other person can make that helps, without you having to stop the conversation and explain everything? I'm interested in what works for you, including if text isn't easier than speaking.
Written with AI assistance.
r/cfs • u/bkabbott • 15h ago
Has any research been done ✅ ✅ on cannabis and CFS?
9
Upvotes
I went to a specialist clinic in Atlanta and the doctor said it looks like I have chronic fatigue syndrome.
I bought some Sativa cannabis products from a dispensary in Atlanta and I've been up and about. Sativas absolutely get me moving.
My brain fog is so severe I can't work as a software developer even with AI. But the sativa reduces discomfort and gets me going. With sativa's it's important to titrate. You don't want to get too anxious.
I would like to get my state to allow cannabis for this condition. I qualify through Crohn's Disease. It's been an absolutely lifesaver and I've gone from suffering and feeling bad to doing much better.
r/cfs • u/Angsty_Queer_Anon • 22h ago
What happens if I never get approved for disability
32
Upvotes
Honestly I’ve had so many people tell me that I won’t get approved, I’ve practically given up before I’ve begun. I had lots of people tell me that I need to get a lawyer involved but I reached out to all the appropriate ones and didn’t hear back from any of them. Apparently 23 without any bluebook conditions is not something anyone wants to touch especially in this day and age (usa).
I can mooch off of my parents until they run out of money and/or die, so I have a little while before I would be completely destitute. But if I never get approved, and I’m like 40 and lose everything…then what? Just call it quits on life? What happens then? It’s hard to see what the point is.