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 I'm also on treatment for ADHD but the benefits from the machine superseded anything I felt on prescription medication.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.

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.

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

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

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.

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

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

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

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?"

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.

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

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?

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.

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)

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?

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'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

Hi guys! Wanted to ask u what do u think about it :) i’ve seen a video today from the youtube channel “ understanding mecfs” that further explains that it might be the right path. Also the nanoneedle stuff seems to point in that direction too. What is your perspective on this med in development? Also do u have news on the state of funding?

I tried Fluoxetine/ Prozac for my PMDD symptoms last month and while it worked INSTANTLY on the PMDD doom, it gave me scary side effects. I have ME/CFS and another autoimmune condition and found that it made me zombie-level tired (already severe) and really damaged my gut health. I read that it's common for ME/CFS people to be intolerant to SSRIs, even in small doses, so I stopped taking it as there was too much risk involved. I am still recovering!

Has anyone tried a different antidepressant that's less fatiguing? Is there a different class that I should ask my GP about? I am looking for something that I can take intermittently at an extremely low dose.

Firstly, I’ve already spoken to my doctor twice. They did a urine and blood sample, which both came back showing no issues.

About 4 weeks ago I started having low energy, nausea, loss of appetite, and a very gentle cough that would come and go for a few minutes a day.

Over the last two weeks it has progressed to heavy fatigue, extreme nausea, dizziness, body pains, but I still don’t have a fever. I do have a more severe cough at least.

I seem to get days where I feel great and almost normal again, but then last night I was going to bed and just had a massive crash with all symptoms going into overdrive. This is usually coupled with huge anxiety as well.

I’m bricking it that I’m heading for long Covid or CFS. I’ve seen what it has done to family members and I’m genuinely petrified. Especially since I’m unable to work, clean my house, go for a drive, etc.

Any advice would be greatly appreciated. My doctor doesn’t seem to care and basically told me to go away.

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

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.

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.

Im looking for a smartwatch for pacing and crash prevention, one that can track my heart rate continuously with alerts when exceeding a set threshold and with fatigue/sleep tracking too.

Do you have any recommendations?