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.

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.

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??

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

I’ll start by saying I’m mild, so this will likely come across as me being a whiny b!tch to those of you who are severe. This turned into more of a vent and diary entry.

I recently got my POTs under better control with extended release propranolol and did less than an hour of weeding 2 days ago. My HR spiked too high for too long, Visible warning me, so I stopped, rested legs up and went back to it but could tell it was too much still so I stopped. Then yesterday we went car shopping (before they’re double in price) and I could feel my legs and arms getting heavy on my way home.

The evening just took me worse into fatigue, deep horrible aching all over, flu feeling, sound sensitivity, headache and weakness beyond repair. Do you ever hope that “Oh, I’ll just get a really good night sleep tonight and I’ll feel OK tomorrow.” That’s what fixes problems for most everything else. Hydration and rest, better in the morning.

Not for us with ME.

I had plans to go to the protest today. I want to do my part to fight back, for my family, my trans kid, my teen daughter, myself and my communities. I feel so guilty that I’m laying here doing fck all while everyone is out there causing good trouble.

I wanted to plant the rose bushes, and help my husband build garden beds in the 70F weather. Get some sunshine on my body, feel the breeze, touch the dirt, hear everyone mowing their lawns and the kids playing outside. Help my son clean out his new-to-him car. So proud of the man he has become.

ME won’t allow it.

But here I lay. Crying alone In my dark cool bedroom, avoiding sunlight and sounds because it hurts. Not eating because my body won’t digest it well. Drinking so much water but regretting it when I have to shuffle and creak to the bathroom every 30 mins. Trying to find a comfortable position so my limbs will stop aching. But never finding it.

ME is cruel.

Why has my body betrayed me so? How long will it punish me for again? When will I get to enjoy my family and my environment again? Will I ever actually recover?

ME will never let you know.

I’m mild, for now, so I’ll recover back to a baseline that may or may not be worse than before. But definitely worse than when I was healthy. Then every day I’ll have to continually pull myself back from doing too much, but never knowing what too much actually is for me. Forever in fear of that horrible feeling that washes over your whole body, knowing that something you did in the last 48 hours was “too much”.

ME is too much.

If you got this far. Thanks for reading. I think I needed to write it out. Thinking of you all 💕

TLDR: Feeling down today so wrote a blog post about a mild person (me) succumbing to PEM from gardening and missing all of the things that they love and planned to do this weekend while there is one day of beautiful weather outside.

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

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?

I just had a blood draw 2 days ago, and I am completely blasted. I slept more than normal, and I am unable to concentrate or think much at the moment. I feel no interest in doing anything heavy, or even thinking, I just want to rest.

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.

hi guys!!! first time posting here; i was diagnosed with cfs a year ago (along with pots and junior fibro), and have been struggling getting through the day. because of my stomach aches that i get with my pots, i have avoided any carbonation JUST in case.

but recently i had some, and realized it made me feel a little awake!! not the caffeine, but the bubbles!! feeling the electricity like feeling in my mouth makes me feel a little more aware, even if just for a moment. so far i've felt the best results from sparkling water!!!

not anything to write home about, and barely enough to make a change,,, but it's a nice little victory for me :) just thought i would share.

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.

How frequently can you take benzos without developing reliance and addiction?

I currently limit myself to one lot of 2mg of Lorazepam a week when I’ve overdone it or need sleep. Trying to establish if I’m having withdrawal symptoms or just standard CFS nonsense.

Any thoughts much appreciated!

I can’t list EVERYTHING bc I’ve been sick for almost a decade and tried a lot of things.

But currently I’m taking Ivabradine, Midodrine, Flucrocortisone, LDN, Montelukast. Still very severe.

Most recently tried a one moth course of Valtrex, no result. Rapamycin no results and was affecting my lipids so I had to stop.

I’ve tried in the past propanol, atenolol, gabapentin, antidepressants, cromolyn, trazadone for sleep (had to stop) and the list goes on.

I’m thinking on asking again about Mestinon and LDA. another recent meds that people are seeing results and I can suggest to my doctor?

I think what I need to target the most is PEM and general tolerance to exertion (I have none), weakness including respiratory (PFT shows restriction), neuro inflammation like brain burning and hurting and also toelenwfe in cognitive exertion, GI/MCAS…

Thank you!!

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

I'm so severe I start notice this effect after I started ldn I search on apple and cider vinegar in this subreddit and the covid subb and found a lot of pots about apple Now I start connecting some dots I didn't have the ability to type on keyboard or phone fast but after ldn when I eat an apple I found myself able type like I was before cfs

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?

First of all, I know that running on adrenaline is definitely a no go. Been there, big mistake

But you know when you do a difficult task and it's way too overwhelming for the first 10 minutes but then the brain starts clearing up and everything gets way easier? I assume that's the adrenaline kicking in

What I noticed is that if I stop after that and pace as usual I keep the clear head for the rest of the day, or even multiple days, without any consequences. I've been doing this every other day for a few months and it's been going without incident or worsening of any kind

So, is it fine to use a bit of adrenaline if you don't use it for overdoing it?

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?

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

I want to feel more connection with people. i’m severely affected. how do you do it? i can not do video calls. sometimes text feels so disconnected or something; hope you get what I mean hè?

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.

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

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)

I’m waiting on my local ME/CFS team to evaluate my case (2 months or so until I’m supposed to hear back) but since my last flare-up, a few weeks ago, my appetite has gone and hasn’t come back.

I also feel significant abdominal pain if I eat/drink more than my insides can handle, which is honestly pretty little, and this has really become limiting on how much I can take in. Some research suggested this might be visceral hypersensitivity. I do have fibromyalgia, though.

I’ve gotten a full GI workup semi-recently which was normal, and my GI Dr. wants me to wait for the ME/CFS team for most of my symptoms. I do have an appointment to discuss possible meds for my appetite at the end of this month.

I’m wondering if anyone else has symptoms like these, and if you’ve found anything that helps keep you fed/hydrated? Thank you all, I hope this post is ok.