r/cfs Nov 10 '24

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

316 Upvotes

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

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

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

Here’s some basics:

Diagnostic criteria:

Institute of Medicine Diagnostic Criteria on the CDC Website

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

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

How Did I Get Sick?

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

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

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

Pacing:

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

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

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

-Severity Scale

Symptom Management:

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

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

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

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

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

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

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

-Bateman Horne ME/CFS Crash Survival Guide

Work/School:

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

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

Info for Family/Friends/Loved Ones:

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

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

-Bateman Horne Center Website

-Fact Sheet from ME Action

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

Pediatric ME and Long Covid

ME Action has resources for Pediatric Long Covid

Treatments:

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

-TREATMENT RECOMMENDATIONS

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

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

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

Physical Therapy/Physio/PT/Rehabilitation

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

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

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

Some Important Notes:

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

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

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

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

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

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

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

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

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

Period/Menstrual Cycle Facts:

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

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

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

Travel Tips

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

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

Other Random Resources:

CDC stuff to give to your doctor

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

NY State ME impact

a research summary from ME Action

ME/CFS Guide for doctors

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

Help applying for Social Security

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

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


r/cfs 4d ago

Wednesday Wins (What cheered you up this week?)

15 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 46m ago

Remission/Improvement/Recovery For those who haven't had it done, please get screened for a sleep study.

Upvotes

I recently got tested for sleep apnea and was given a CPAP machine after an extremely awful result.

I've dealt with a near constant feeling of mental fog and exhaustion from high school onward and I never was able to get a clear reason for why I felt so terrible. I went to different doctors and I tried different things but it was all basically in vain.

The CPAP machine is the biggest boost I have had in literally years. I'm also on treatment for ADHD but the benefits from the machine superseded anything I felt on prescription medication.

If I had known I'd get this kind of benefit, I would have done the test years back.

You do not need to be obese to have sleep apnea. You simply have to have an airway which relaxes too much while sleeping. Just cover your bases. They even offer home tests for people who don't want to sleep in a clinic.


r/cfs 3h ago

Tips for ME/CFS (hygiene mainly with some misc)

26 Upvotes

Just sharing some tips I find helpful. Many of these are hygiene related, but there are also various miscellaneous ones. I've included a few bullet points with different ideas. I hope this helps somebody!

Feel free to share your own tips too :)

Struggling with brushing your teeth: - You could try keeping toothpaste in your room and apply it using your finger. - Or I believe it's possible to find disposable toothbrushes with toothpaste already applied that you could keep in your room - Or mouthwashing is also an option

Struggling with getting changed: - Don't do it all at once if it's too much. You could try splitting it into sections over the span of minutes, hours or days to prevent overdoing it as badly. For example changing your top first then changing your lower half at a later point when you feel able to - When you go to the bathroom you could change your lower half (pants, underwear, that kinda thing) while you're there to preserve energy

Struggling with bathing: - If you're able to shower but it's difficult on your body you could try a shower chair or sitting down in the shower. If showering costs too much energy there's different ways to go about it too aside from baths. - Get wipes to clean your body. If possible to exfoliate as well I would recommend to as to avoid a build up of dead skin, but if it's too much for your body to handle don't push yourself too hard. - Get a cloth and bowl of water and clean yourself. You can also buy exfoliating gloves which work well in my experience. - Ask for assistance from a carer if you feel comfortable with it and have one

Struggling with washing hair: - Ask for assistance from a carer if you can and ask them to do it over the sink. I do this while sitting on my shower chair over the sink. Although it can get uncomfortable with the hark sink against your neck, I use an inflatable pillow with suction cups to cushion my neck - Dry shampoo (can cause issues if you overuse it I think) - You can get shower caps that come with shampoo (shampoo caps) inside of them to wash your hair with

Struggling with remembering things: - Sticky notes that you keep in your field of vision so you don't forget - Alarms - Or something I like to do is if I need to do something soon and I'm worried I might forget while on my phone, I open another tab in the background with the notes app, write what I need to do then leave the tab open in the background. That way if I go to close an app on my phone I'll see that tab and remember.

Struggling with headaches: - Migraine patches that go on your forehead. In my experience they don't take all of the pain away but they help a bit. Plus they're cold when you apply them, good for summer heat. - Painkillers - Closing the curtains

Struggling with heat: - Wear as few layers as possible - Can try migraine patches mentioned above - Cooling mat to lay on - Large fans that can sit beside your bed - Neck fans (I am such a neck fan enthusiast, I really recommend them!)

Struggling to cook/make food: - Frozen meals - Asking a carer to help - Sitting down while cooking - Takeaway - Eating the deconstructed versions (for example, eating a sandwich in seperate parts instead of all of the ingredients together) - Snacks and premade food


r/cfs 13h ago

Just figured out I’ve been living with moderate/severe me/cfs for years.

139 Upvotes

I've never had the language to describe what was happening to me. I just assumed I was lazy, depressed, having flashbacks, dissociating, etc. which was simultaneously true.

Why can't I make myself food? Why do I avoid taking care of myself? Why does even the thought of a shower overwhelm me? Why can't I get out of bed for days or weeks after leaving the house for a few hours? Why can't I get or keep a job?

No, I'm not officially diagnosed. But thanks to this sub I have the language to describe what's happening, and know that there are other people who struggle like I do. I'm not alone. My experience has always been valid.

I'm going to finally fully explain my experience to a doctor. I've had many doctors appointments but things always seem to get dismissed. I'm taking someone with me this time. I'm going to advocate for the help I need.

Thank you for reading.


r/cfs 6h ago

Research News What is some exciting research I should be looking forward to?

22 Upvotes

Hey guys, i am feeling very hopeless at the moment. Everything feels pointless and I don't see the point of going on like this. I just don't want this life.

I keep seeing studies coming out but not changing anything for us. It just feels like it would take litteral dacedes for anything to change. By that time I would be too old and probably deteriorated even further.

Anybody know of any research going on at the moment that could mean something?


r/cfs 3h ago

Anyone experiencing the opposite of the ‘October slide’?

11 Upvotes

My symptoms went from bad to worse last Sept-November and I became solidly severe. Couldn’t tolerate light, sound, screens, sitting up, talking, could barely walk even with my cane the 8 steps to the toilet. Couldn’t read more than a couple of sentences of a book, in depth article or any poetry.

I’m definitely still severe, but my FUNCAP is confirming what I’ve been noticing over the last two weeks alone. Some small improvements to sensory stimuli, I can sit up now for 45 minutes, reclined mind you, but much more upright than before. I’ve also started being able to read just a little bit again. I’ve managed today for the first time in 6 months to listen to relatively chill music through my headphones, it’s been very low level background in a small speaker til now or nothing at all.

I have posted in previous posts that in the past months I’ve been put on beta blockers and now have carers 4 times a day washing, dressing me and cooking for me. So these are obvious factors. But there still seems to be a slight spring upswing and I wondered if anyone else was feeling this?


r/cfs 1h ago

Advice Has anyone in the north of England been to this inpatient clinic?

Post image
Upvotes

Some of my family members are urging me to “be proactive” and get on the waiting list of this inpatient clinic.

They still see my condition as a problem to be solved rather than my perspective which is a tragedy to be endured.

The bottom line however, is that there is no treatment for M.E and I am cared for at home where I can pace myself in my own surroundings.

“Centre of psychological medicine” furthers my concerns for obvious reasons.

I am terrified of the severity and difficulty of this condition however an inpatient ward simply sounds like a waste of time and energy I do not have but would be great to hear a story to the contrary or if someone can point out flaws in my thinking


r/cfs 2h ago

I’m mentally paralyzed by fear

6 Upvotes

Nothing just this. I really try to stay positive but i’m kinda going insane… i’m pretty broken


r/cfs 3h ago

How to differentiate the fatigue from CFS, POTS and MCAS??

7 Upvotes

As the title says. If you have all 3 conditions, how to differentiate between the fatigue you get from each?

Just trying to figure out what I can control and what I can’t. I’m exhausted all the time even when not in PEM.


r/cfs 19h ago

I think we should all be allotted PTO days from this disease

124 Upvotes

Like you get 2 weeks off from having ME/CFS per year. You can do whatever you want on those days and whatever you do won’t cause PEM or worsening of your baseline. risk free days. Oh and the longer you’ve had the disease, the more pto you accrue per year 😁

what would you do??


r/cfs 5h ago

Sleep Crashing

10 Upvotes

Does anyone else crash in their sleep? I will go to sleep and crash 1-3AM (it even affects my dreams) and it wakes me up. I will then decline throughout the rest of the night and start the day in hell. It has accelerated lately and is very scary. If you do have this, have you found anything to prevent it?


r/cfs 6h ago

Vent/Rant I keep failing at pacing and idk what to do anymore

11 Upvotes

I'm very severe. No going to the toilet, no speaking, no sitting up, no food that you have to chew, no light, no sound, etc. Anything over 1h of screen time in VERY small fragments makes me crash. Still I've been ending up with up to 4h every day for weeks ever since starting an ssri (Paroxetine). It's like all my discipline is suddenly gone. I'm rapidly declining and I'm in even more pain every day than usually. Every day I feel super guilty and sad because of it and then because it's so difficult to just lie there and try not to cry because that'll also make me crash I go on my phone. Idk, it's like I've just completely lost the ability to pace. I've tried apps to not go on my phone and I've tried people telling me to pace and nothing is working. I always manage a couple days and then first it feels worse because I start to come out of rolling pem so the adrenaline stops masking some of the symptoms and I end up lacking the motivation to keep pacing. I just don't know what to do anymore, every day I tell myself today I won't go on my phone at all but I've been doing this shit for half a year and I'm done. I can't do it anymore but obviously that just keeps making things worse. I'm so mad at myself


r/cfs 2h ago

Advice Specialist in UK

6 Upvotes

Are there any private specialists treating people with ME/cfs? I'm tierd of waiting around on the NHS and not getting any proper plan of action. Thanks


r/cfs 23h ago

Vent/Rant Doctor told me CFS doesn't exist

202 Upvotes

Just a rant here: A doctor the other day told me there's no such thing as chronic fatigue and then sent me a link to a Mayo Clinic article about idiopathic hypersomnia, which as far as I can tell is simply another name for chronic fatigue; it is unrelenting fatigue with no known cause and no known treatments. So he believes in idiopathic hypersomnia and not chronic fatigue. CFS simply doesn't have a chance of medical advancements if medical professionals don't take it seriously. At least that's how I'm feeling in this moment.


r/cfs 4h ago

Did anyone ever get their brain function back from being in complete darkness?

6 Upvotes

I want to know if anyone who could not do screen, Movies, tv, laptop etc get back their ability to do these things again? If you did, what helped you? (Apart from pacing and resting)


r/cfs 11h ago

Advice Is it normal to have extremely intense anxiety with this illness? Specifically in regards to brain pem. Or is that more associated with the LC group?

18 Upvotes

My son is quite literally screaming in agony from the intense anxiety. He is very very severe & his brain burning has almost become constant. We have no idea what to do. We’ve never heard of a case so severe.

His fight or flight won’t shut off.


r/cfs 2h ago

I'm still confused whether I have PEM or not

2 Upvotes

It's hard for me to understand when I'm in PEM as my symptoms are so inconsistent. One day I could have temperature dysregulation and high hr then the next I could have headaches and acid reflux. Change in symptoms aren't reliant on exertion.

Do I even have CFS/ME or just long covid/ chronic fatigue. Wish there was a test for this


r/cfs 2h ago

Standing a while (for severe/very severe)

2 Upvotes

Good morning I don't watch TV anymore, I'm on my phone too much I know, and be careful. Afterwards I learned, it's only been 2 months since I knew that I had this disease. I had it for two years, but I forced it (alcohol, sport, work). Too bad. Being in bed all day, I still get up to take steps in the room. I tested a half beta blocker for the first time at midday and it's been a year since my bpm was this low standing (75/80)... Isn't it risky to get up a little anyway? I still have trouble knowing what a pem is, a crash yes, I've had a few in recent weeks, taking me from severe (even moderately severe two months ago) to practically very severe. I don't know what a pem is exactly... a weird feeling in the head when you're in front of screens too much (pain in the center of the head)? Tinnitus (I have it all the time)? I'm never tired... EVER! I started Mirtazapine 7.5 to stop benzos and sleeping pills. How do you know when you can start moving a little more? Do you no longer need a weird feeling in your head? I've had this since my last huge crash at the end of January, the final one which excluded me from the moderate (mild) stage. I could still drive 5 hours straight, go shopping, make love to my wife... Difficult to know if a shooting pain in the head is a constant pem... I feel like I'm in an EM group permanent neuro inflammation and burned autonomic nervous system.


r/cfs 3h ago

Disability Payments Looking for support groups in Germany

2 Upvotes

I live abroad, but my condition is worsening and I will have to move back to Germany soon. I'm going to try to apply for Erwerbsminderungsrente, although I doubt I'll be successful. It would be good to connect with others to find out what the best steps are to get some financial support. I've already been diagnosed, but I'm not even sure if that'll be recognised 🙄

Ideally no Facebook because I don't have an account and don't want to create one but if that's the best option then so be it. I'm only interested in the legal aspect, not emotional support. As far as I can see the charities do no offer legal assistance.


r/cfs 10h ago

Horrible « CNS attacks », CAN anyone relate?

7 Upvotes

Very severe, can’t talk or tolerate anything.

Yesterday I had a medical appointment at home, I had the chance to stay in my bed but I still had to talk a bit and stay in the light for 15 minutes. During it I sudden my had a scary attack, sudden onset of extreme DPDR and confusion, then there was like a heat wave or electric wave that traveled across my whole body and brain, it made me very weak and I thought I was about to collapse. I then had extreme racing thoughts, hallucinations and and hot flashes during an hour before being a bit better.

Then this morning I had a similar thing happening while looking at my phone, sudden wave in my whole body, I now feel like I’m on the verge of having a stroke from nearly every stimulation. What do you think this is? It doesn’t really feel like my usuals adrenaline dumps, it feels more related to the cns or brain. Thanks


r/cfs 21h ago

Advice Why do we crash after bathing? Is it the heat?

51 Upvotes

Thanks for the replies but here is how I "bathe" I sit in the bathtub, use the handheld shower and leave the bathroom door half open so it doesn't get too warm and steamy. Wash my hair first so the rest of my body stays chilled.

Turn the water on and off again many times so I cool down between shampooings.

But after I get out and wear my Apple watch again my heartrate is still around 100 which means it probably was high in the bathroom too


r/cfs 1d ago

The moment you realise someone doesn't understand

119 Upvotes

Some examples:

In response to me saying I need to pace my energy: 'You don't want to help yourself'

'In response to me saying I had a headache: 'They can be caused by stress, but I don't think you are stressed.' (laughing) Me: 'Why?' Them: 'Because you're in the bed all the time.' And later when I said you can be stressed in the bed, they smirking said 'like what?' (I have been very stressed by not being sure I'll have energy to do stuff, by isolation, lack of change of scene)

And in response to me needing help with other stuff: 'You seem like you can do this', 'You seem loaded up with energy, so that was why I was surprised you said you couldn't' (after saying other stuff that showed a strong lack of understanding). 'You don't seem like you need help with that.'

Or when I do something and say I can't do it every day. 'But you did it today!'

Or when I say I'm struggling mentally being in bed all the time 'You can just walk to the living room.' And then I say I cant walk to the living room. 'You can just walk and hold onto the walls, here and here, and here'. And I say it's not about that, but they don't understand.

So so many more. It's heartbreaking. The worst part is, I feel the need to explain my condition, but it doesn't help, they just have more questions and more misunderstandings, or just comebacks to me. But if I don't explain they also don't understand.

Do you have this? Isn't it disturbing when someone you think understands you suddenly thinks you're a lot better than you are or have an easy life, or that your attitude is the problem?


r/cfs 1h ago

Advice Numbness and pins and needles

Upvotes

The last year or two I have been getting increasingly bad numbness and pins and needles, just down my left side. It started in my arm, but it is now the whole side of my body. Lately I have also been getting very stiff and my muscles all over are just not working like they usually do. I'm on year 38 of ME at this point, and also have POTS and chronic migraine. It maybe I'm just getting more background damage over the years, with who knows how many crashes.

The only advice I have got from doctors is it's probably related to ME or migraines, but that's it. No treatment and it's steadily getting worse. I feel like rigor mortis this days and it's disturbing TBH.

I know symptoms can change over time and I am getting older, but are there other PwME on here who have the same symptoms? It would be reassuring if there were I guess! There is no point trying to talk to doctors any more. They have no interest in helping. Currently in a very severe crash the last 2 months and that isn't helping.


r/cfs 2h ago

CFS and Heart Attack w/Stent

1 Upvotes

Hi all. 3 days ago, I had a heart attack requiring 2 stents and was in the hospital for 2 days.

Has anyone here ever had a blocked heart artery that required a stent, while having CFS? What I am wondering, since the stent allows for more blood flow to the heart, did it have any effect on your CFS or fatigue/energy levels?

It is too soon for me to recognize any changes since everything is different at the moment. I will post again after I am recovered from this to share any positive or negative outcomes.

Thanks


r/cfs 3h ago

Does this fit mild cfs or could it still be something else?

1 Upvotes

Hi everyone. So Id be very grateful about some opinions - in as short as possible: first weird crashes in September every few weeks, not associated to exertion, still very often sports. End of November what felt like a weird cold (stuffed, but no runny nose, flulike without fever or much else). Then for months fluctuating, possibly postviral symptoms (potslike, sometimes muscle sensations, sometimes insomnia, forgetting words occasionally, sometimes unable to get out of bed in the morning...), worsening until I went fullstop 2 months ago. (No sports since 4 months) When I crashed already after 2h working in bed I stopped everything, since then incredible improvement. The only thing that seems left are frequent "flulike" days. Eg- 3 almost healthy days, then on the fourth flulike without other symptoms, maybe sore throat. On the fifth fine again. No brainfog. No pain beyond some normal muscle unwellness as in the flu. No cough, fever etc. I live these days basically normal except feeling pretty shit. Next day as if nothing had happened. A lot of stuff already tested for. What do you think, does that fit mild or rather something else? Or "postvial fatigue/LC but possibly will clear by itself?"


r/cfs 15h ago

For those who rest most of the day, do you do it with breaks?

11 Upvotes