Well, guys, I'm making my first post here (I think). I'm severe, I've been bedridden for 12 years. Things in this time frame got a bit better, at one point I was able to go to the Gym. Took me an hour bc most time was sitting there due to my POTS. But still. It was movement. I got put on propanolol last year for POTS, it helped my standing. Still, I couldn't get out of bed. Thought it was a starting task issue. Trialed adderall. Did so. Many. Steps. And by that I mean like 5,000 compared to the usual 400.

At this time I was also pushing myself for sooo many doctors appointments. In january, I crashed. I crashed again in April. I have not returned. I have gained weight. I'm so bedridden most days I'm fine not even wiggling my body in bed for circulation which I know is bad. Showers are every 9-14 days. With misery beyond belief. I can't manage even standing bc of pain. I'm investigating what else is causing my standing intolerability.

I've been diagnosed with MALS. I want/need MALS surgery because the pain is too much to bear. It's been 20 years. I'm working very closely with many doctor specialities.

I was told tonight I need to lose 45 pounds to be eligible for surgery. Weight loss has been one of my primary goals for the last 10 years, since I gained 60 lbs off a med. I know all about nutrition. I try to make every food choice good. After medical procedures, I seem to gain weight. So, last year I was 208. This year 245. I am typically 145.

I am completely heartbroken. How to do it when I can't move, moving causes excruciating pain I want to d**, I can't even make myself food. Realistically considering glp which I never wanted.

_____

I'm covered from a practitioner point of view, hopefully they can help. Not so much asking for advice but maybe those super severe might have some? Traditional advice just won't work, as we know. So, I am mostly sharing because I am heartbroken.

Not that I have to lose it, I know I do. It's actually causing me pain right now. But how. That is the question. How without hurting myself. :(( Thanks for listening.

Ps. I need this surgery 😭 I was hoping for in 2 months, so it now probably being over a year is a huge setback. The pain from it is one of the reasons I'm bedridden, and it's causing me massive pain every day.

Thanks. ♡🌹 a flower for also those suffering <3

I have nobody to vent to. NOBODY, friends, family STRANGERS dump on me.

When it's my turn NOBODY IS THERE FOR ME.

I have NO ENERGY in my body. My doctors are not helping. ME/CFS, Long Covid...Thyroid issues, arthritis, adhd, Seasonal Affective Disorder, right side appendix area burning...do I have Autism? Maybe..

My partner CONFRONTED me minutes ago "get off your a$$ & do something" I vacuum, dust, water outdoor plants, clean the kitchen...

I'm at my breaking point, in pain and told him EVERYTHING, it came out controlled, thoughtful it was perfect! PERFECT...

He was quiet, and I thought he would say something profound...

I looked at him...he was looking at his phone...absolutely NOTHING from him.

I don't want anything from ANYONE.

I want to move away from him and his big-a$$ house and live out my retirement 😢 years alone.

But, I'll miss my dog...I can't take her.

Lol, I need energy to pack & move...and lots of money. Rents are my whole disability check here in Seattle.

I've protected myself my entire life NOW, in a spider 🕷 web.

Thanks for letting me vent.

Disclaimer: this is based on my personal experience. I am one person. What works for me may not work for others

I have been having oxygen therapy twice a week for about three months now. I was warned that it may make me more fatigued at first and it would take around 16 sessions before I felt any effect.

Exactly what I was told is what happened. After the first few sessions I slept for about a day after. And around 16 sessions in I began to notice an improvement in my symptoms.

I have moderate MECFS, triggered by a viral infection. I have had it for 12, nearly 13, years. I have spent years bedbound. I use a wheelchair when I leave the house. I had to drop out of education. I have never been able to attain a job. My life has been incredibly restricted.

I am starting to be able to walk more. I have been able to bake. I have been able to go out and meet friends. I have needed to sleep less, and my quality of sleep has been good. When I have flare ups they last for maybe a couple of days, instead of weeks to months. People in my life have noticed these changes and commented on them. I physically look more well.

For the first time in 12 years, I feel hopeful for my future. I feel that I may be able to return to education and start a family.

I definitely still have MECFS. There is no doubt about that. But my symptoms have become significantly less severe.

I feel the need to share my experiences because i truly did not believe it would help. But it did. And i hope that there are others it can help.

Just got this RX from my provider. Supposed to help with PEM and my ME/CFS symptoms from Long COVID. Starting at 30mg twice a day.

Anyone else on this or have tried it? Anything I should look out for or be aware of?

I hate stairs so much. But I have new trainers and they have bouncy soles.

So I had a silly moment of bouncing up the stairs and it didn't hurt or exhaust me, it was just fun.

What is life without a bit of whimsy!

After developing POTS, I had a few bad crashes, and I had to go on medical leave, and mostly bedbound. My family doctor prescribed propranolol (for anxiety), but it disrupts my sleep, so I asked if she would prescribe Metoprolol ER so I don’t get an adrenaline rebound in the middle of the night, and it lowers HR, she said no, because she didn’t believe I have POTS. I said I have Visible, a continuous HR monitor, she said, I would advise against that. And she questioned why I don’t go out all the time. I said because I am trying to pace, and have OI is makes it extremely difficult. The whole interaction made me realize that she doesn’t know anything about ME/CFS, and she asked me to visit her in person to really see that my HR goes through the roof when I stand up. I am really nervous about that visit, because if she doesn’t understand pacing, she’s not going to help me, because then an elevated HR is no problem at all. If I were a doctor, and my patient had an illness I did’t know much about, I would try to learn about it.

I am scared about the appointment, and I would appreciate any advice.

Hello all,

I’m excited to say I’m getting married in 10 months. I had severe CFS 4 years ago and am now mild (80%). It takes a lot to make me crash at this point, but I do start to flare up after 1.5 days of busyness.

My fiancé and I both have big families that are traveling in, so we’re looking at 100 person wedding that will likely span multiple days.

I’m looking for tips or advice you think will help me get through the weekend!

We have an average American wedding budget so can spend for some things but not everything.

Thanks in advance!

I can't do this anymore.

I was diagnosed five years ago with mild ME, and my family was supportive at first, but when I didn't get better, things started to change. My older sister, who had been like my best friend, started to pull away and really stopped including me in her life. My mom and dad are trying, but it's killing them to see me not improving.

Worst of all, my younger brother, who I didn't have a great relationship before, turned mildly ableist. I can't say it's bad, but everytime I see him, I end up in a flare. He lives across the country so I only see him maybe twice a year, but it hurts me so much each time.

Recently, our family started going to therapy. It hasn't helped much, and honestly revealed to me that my brother wasn't willing to change and thought I was the problem, which I haven't been able to forget. He thinks I can get better, I just don't try and said nasty things when I mentioned how worse things can get. He thinks I'm jealous of him, which is crazy because even with the life I have (and I'm not happy in the slightest), I honestly might choose mine now over his. It's just unappealing to me.

The problem is my family sees every little jab at my illness as our previous conflict and don't want to get involved. Even when he's mocking me for going to a park to do yoga instead of running (which was a big step up for me, I overexerted myself a while ago and am still paying the price), my family insists it's a personality conflict.

I've tried explaining. I'm just so exhausted of having to defend myself and everyone acting like I'm the bad guy for not wanting to be torn down in little ways all day every day. I used to work part time, something that hurt me immensely, to pay for an apartment with some roommates, and I feel like I was happier there. I was in horrible pain and could do nothing but sleep on my days off, but having that community of roommates and friends who understand and care is just something I can't believe I gave up. Moving in with my parents was supposed to be so I could get better, not to feel like I don't matter. Physical pain is so much easier for me to push through than emotional pain.

I don't know the point. Just venting ig.

Tldr: my brother has been worsening my condition and my family does nothing about it because they see it as old conflicts. I don't know what to do.

(Let me know if I formatted anything wrong I tried to look over the rules to make sure but ill change anything if I missed something)

If you need to lay down, do you FEEL your blood pressure rising? Rn it seems counterproductive to be on a medication that makes it so that I need to be upright when I feel like what I actually need to do is spend more time laying down but I have to take this because I don’t want my doctor to think I’m noncompliant. I don’t care if my blood pressure is high if I don’t feel it, I’m more concerned that it will make resting more difficult.

Edit to clarify: I have not started it yet, just want to know what to expect

I spend a lot of time in bed and try to stay upright in the day or i get headaches. My wedge is too short and my neck ends up hunched, which is killing me. Can people share photos of their setup: what wedge/pillows you use, how many, and how you're supporting your shoulders so your neck stays neutral rather than crooked or hunched forward

I am about 8 months post viral infection (COVID) that gave me all my current health issues. For about 3 or 4 months there in the middle Id swear I was what you would consider almost severe ME/CFS. I definitely have dysautonomia or some kind of vein insufficiency (official dx as POTS) some sort of connective tissue disorder (awaiting genetic test results), Functional neurological disorder (official dx) and recently discovered some sort of blood sugar issues. I had PEM, at least 3 big crashes that I could track and they were delayed by a few days and resulted in worsening for the next month at least in a baseline. I got to the point where I couldn’t even push myself to the bathroom in my Rollator. I still have brain fog and feel very low IQ/have memory issues. So I had my tag on here listed as severe because I fit that, with sensory overload and all. However recently I’ve made some pretty miraculous improvements. My life is still pretty small in comparison but it’s like I no longer meet the criteria for PEM? I get a POTS flair or MCAS flair but it’s no longer paired with the intense worsening. I still get nerve pain and such but I push myself and push myself and……PEM still doesn’t come. I was diagnosed with CFS without being told about it by my doctor and the only reason I noticed was because I just happened to see it on my chart while at urgent care once for a swollen finger. So of course I have to inform myself and that’s how I got here. I’m terrified to even make this post because I’m very superstitious. I don’t know what to think.

Like the title implies, I'm looking to get my diagnosis of FND removed from my chart. This idiot neuro slapped it on my chart after not even 30 mins of talking to me and zero testing done. I don't fit any of the FND description in terms of symptoms or disease progression, and I believe she only put the diagnosis on there bc of my documented psych history w her organization (which has been fully resolved for years anyway). It has caused so many nasty comments from providers who assume I'm some crazy psych patient, it's incredibly difficult to get taken seriously, and it's also j not accurate. I have notes from my PT and an MRI that prove it's not FND, but honestly my symptoms and medical history prove it enough. It follows me like the plague and I'm sick of it, I need it off but no one seems willing to touch it even when they don't agree w the diagnosis either. I want the medical treatment I deserve, and I have no idea how to go about it. If anyone knows of any reliable providers in NJ, NYC, or CT (preferably in the NY Metro area or around UConn, but I'm willing to go a bit further if necessary), the suggestions are much appreciated.

My muscles are getting weaker, and idk if it's from the CFS or inactivity. idk if I count as moderate or severe. My diagnosis was in March and it's been a rollercoaster since then. I'm scared to push myself because I do get pem from doing things like leaving the house, but I'm worried that I'm exercising so little it's making it worse. Any advice/your experiences?

I’m mild so I sympathize with severe patients. But as milds we are constantly compared with able bodied people, which is so unfair! I can still function but if I do some kind of sports that costs me. A few days ago I went for a swim cuse I just like swimming and my family was doing it so why the hell not. Since then my back has been killing me when I sit for long. I do occasionally swim from time to time so I never know when it’s too much!

All my siblings and cousins are over achievers doing so well in life. I could’ve too but I was at a severe disadvantage. At 25 I was diagnosed with cancer and since then there is one health issue after another. I don’t even have any family and the only family I have lives in another country. My parents too, I have a wife but she lives in anther country aswell. I’m visiting them these days. We were hoping she would be able to come to the states after years of waiting but in January Trump put an indefinite pause on immigrant visas essentially freezing them. So we are parted once again 💔

Meanwhile all my cousin are living happily with their wives, doing good financially! I havea job but I’m always on some fmla or ada accommodations. I feel super shitty doing this too! Why did it all happen to me, every single instance of bad luck!

I’ve been having Long Covid with chronic fatigue syndrome for 5 years now and I’ve been having PEM, hypothyroidism, brain fog , fatigue, insomnia , memory problems and typical ME/ cfs symptoms problem with speech as well .

3 years ago I was in the severe category , but by the grace of God I got to the mild category a year ago and I could do things like going out and even dating, I’ve had two girlfriends in a year that unfortunately ended but I could get a glimpse of what life is like.

The problem is, my mother kicked me out in 2022 because she didn’t believe in my illness and I have been living with my father since then. However , my father has seen that physically I changed a lot . I lost a lot of weight compared to when I was severe and he saw me dating girls etc so he’s been thinking im fine again . The problem is , 6 months ago I took a irrational decision and I met a wonderful girl and she wanted me to marry her and I did marry her , I flew to her country the Netherlands ( im from Spain) and married her and lived with her , in her family’s house for 6 months until we divorced last month and I came back to Spain my country .

Since I came back to Spain , I was running on a lot adrenaline and I was suffering and I remember my father has been threatening me to kick me out of his house since months ago as he doesn’t fully believe im sick , so first thing I did was print my CV and go to my nearest supermarket to give it to them . However , it was the biggest mistake of my life and now I’m trapped .

I have been working since August 1 and the shifts have been heavy loaded with carrying 15kg fruit packages , etc standing 8 hours a day and it’s 6 days a week which is literally slowly killing me . My cfs has been progressively getting worse and my brain is deteriorating as well i have a lot of neurological symptoms and heavy PEM that nothing feels real anymore and I feel incredibly sick and isolated .

As I have been recovering from as well the divorce , from being 24/7 with someone who loved me to now alone with this excruciating illness I feel powerless and suicidal . On top of this , whats making me have suicidal thoughts is that on top of feeling isolated , feeling like my brain is altered , and in bad PEM, my father has told me that if I quit the job he will kick me out .

I have begged him crying my tears out , telling him I will get a sitting job or begging him if I can go back to school , he is denying , laughing to my face saying he doesn’t believe and that if I quit he will kick me out . Im at absolute loss on what to do and I don’t deserve to be going through this severe threats and painful disease on top of the isolation.

I need help urgently , i dont know how and when , but my life is going downhill so fast .

I’ve posted here before about knowing when it’s time for a rollator. The conclusion was that if I was thinking about it, it was time. I still haven’t pulled the trigger.

I just can’t stop worrying about how I will be perceived. I can clearly get around without one. But I’ve seen others say it helped them save energy so they can do more as well as have a seat wherever they need it. I think I’d benefit from that. Walking with a cane doesn’t feel energy saving for me anymore. It helps stability some but that’s it.

I also live with family (hopefully not too much longer than another 8-12 months) who do not believe i’m disabled and I’m scared to even use my CANE around.

I don’t know what to do. I think that for longer outings a rollator could help me do more and save energy, but I don’t know if the mental/psychological damage from my family being cruel would make it worth it. I suppose I could try to hide it from them, but that’s hard.

I don’t know. I have no clue what to do. I don’t expect anyone to have answers, but some gentle encouragement or validation would be nice because I’m really struggling with this.

TLDR; know I may need a rollator/will benefit from one but unable to pull the trigger, family doesn’t believe I’m disabled, need advice/encouragement.

I’m so afraid of not getting better, I just started college and I’m in a crash now. I am constantly stressed and so exhausted. I can barely sleep. I want to be “normal” so bad I don’t understand why this is happening to me. I feel so unlucky. If you have anything or any advice, please share it. I feel very alone.

I think this plays a bigger role than we realize or want to admit. Especially those of us still trying to improve our condition.

Does anyone have personal experience with this or know the scientific basis behind it? I would also be curious if anyone contributes not being on there phone as an asset in there recovery?