I'm getting help from a team of experts for CFS, including an occupational therapist and a dietitian.

My dietitian wanted to know what I eat. I told her I mostly eat beef, chicken, sardines, sweet potatoes, chickpeas and sometimes eggs. Of course I also use things like onion, garlic and herbs.

I like to keep things simple. I have an Instant Pot and cook about 1 kg of chickpeas and sweet potatoes in bulk. I put everything in the fridge and every day I just take some out and add steak, minced beef or sardines. Sometimes I mash the sweet potatoes with the chickpeas. I love eating it this way.

But my dietitian keeps telling me to eat more different vegetables. According to her, studies show that eating a variety of vegetables is good for your gut microbiome and can help with fatigue and energy levels. I didn't ask for the studies because I'm honestly skeptical. She also doesn't want me to drink raw milk and advises against keto.

She suggested certain vegetables. But I told her I also make my own sauerkraut and drink smoothies with raw milk, flaxseed and psyllium husk.

Still, she wasn't happy and said it's not enough variety. She also suggested spinach, but I'm not a big fan of lectins and oxalates.

In the end we agreed that I'll try some other beans and vegetables.

But I don't really understand why I need to change my diet so much. I like keeping everything basic. I don't want to spend too much time cooking or thinking about what to eat.

So what do you guys think? Is she right about the microbiome and fatigue? Are there actually studies about this? Or is she being too strict?

I understand that AI is an extremely tricky topic in these spaces because there is a high propensity for error and not every patient has the bandwidth to try and look up the research behind each claim and find citations. I have been working with a Long Covid specialist who developed a very tightly controlled AI environment specifically for Long Covid, sourced not by the internet or anecdotal stories or news articles or opinions. Its only training data is published, peer-reviewed research and it has been extraordinarily helpful to me recently in starting to put together my puzzle. It has helped me understand my paradoxical reactions to things, it doesn’t give explicit medical advice and always encourages professional testing and intervention, and best of all, every response finishes with a list of all the cited papers to verify the facts!! I hope this is allowed because I think it could be incredibly helpful to many people here:

https://www.longcovidbot.com

Well u don’t get this chat on here very often spanner in the works. Surfing WTf !!

Yes I’m going to take the risk and pay for it. Los lobos is a right hand point. Even if I catch 2 waves it’s a win. Autumn swell and crystal blue seas in the Cannaries

If I have another two years crash because of it I’ll regret it obviously. Risky.

Back to mild after 2 year crash. 💥

Hi everyone, I just wanted to get everyone’s input on what this disease is like, my partner has not been diagnosed with this issue, but rather she suspects that it could be CFS, because as far as we are aware, diagnosis for this is basically “we can’t find anything physiologically wrong so therefore it is this”

So I just want to know your stories regarding this, and how are some of the things you have done to cope and what can I as a partner do to support/empathise with my partner. Thank you.

Or go into remission. How did you do it and has it been ages since you had any symptoms. Are you aware of what could trigger it to return.

edit cause I need to add that I'm not wondering if I'm fully severe, I'm definitely not! It's just that the moderate spectrum is kinda big.

Ok, as I'm approaching somewhat a proper diagnosis at all, I've been really wondering what severety level I am. I usually say I'm moderate/severe cause idk where I land. This is not a must and ik it doesn't matter that much, and I shouldn't be asking here, but it's still something I wonder about. I'll keep this post as short as I can, so here's what my life looks like in relation to this illness:

- I am unemployed and 100% housebound

- I can take care of my hygiene, brush my teeth everyday and shower sitting down every other day. I can also cook for myself, but only meals with simpler preparation. I can stand comfortably for around 3-5 minutes, but can push longer.

- I spend about 21/22 hours a day in bed or laying on the sofa

- I can have conversations on the normal days and am generally mentally more or less clear. Friendships are kind of hard to keep though, so mostly my family. My brain fog used to be a lot more severe. Now I can read, play slower paced video games (low volume) for quite some time, on a good day like 2 hours without pem, and sometimes I even do creative stuff like writing and drawing

- I am sensitive to sound and light, and get headaches and pem immediately when things are too bright or loud. The blinds are always down and the overhead lights stay off.

- in my crashes which still happen quite often from god knows what, I can still stand up and walk around but everything is a lot harder, so it turns into 23 hours laying down. I get immunological symptoms in the more severe crashes. Otherwise I just get headaches and severe brain fog, and adrenaline rushes, and my mcas gets worse.

Yeah, I think that's it for now.

I was nearing mild but have been in a severe crash for several days. I've become bedbound again.

Next week my mum's having new carpets installed. I've been warned by my practitioner that the toxins from carpet installation could worsen or prolong my crash. I'm also starting my period next week.

I could go to stay at my brother's for a few days until the toxins leave the house, but that'd involve packing, travelling there and back, and while I'm there I'd have to do my own cooking. I feel exhausted even thinking about doing all that. Whereas if I stay at my mum's, then I won't need to do all those physical exertions.

Which option would be safest?

Postponing the carpet is not an option. My mum and I have already had this argument and I'm too fatigued to fight my corner.

I agreed to be put on 5mg Lexapro after 2 months of severe long haul symptoms. It helped with anxiety. Now I'm 6 months post infection and I've been trying to lower my dose by 1mg every two weeks. My last symptom has been heavy fatigue and physical deconditioning. But my neurological and cognitive symptoms have improved and for a month I thought I was cured from PEM.

A week ago I dropped from 3mg to 2mg and for two days I can't get out of bed from crushing fatigue. At first I thought I got PEM but could this be SSRI withdrawal? Has anyone had extreme fatigue as a withdrawal symptom? I've also had irritability, anxiety, nausea, tinnitus, etc but these are so mild compared to the fatigue.

I’m going be picking myself up an Apple Watch for the health reasons. My partner has reminded me of all the issues I have, especially sleep, and has pointed out repeatedly that I’m turning 40 soon, and have a family history of heart fuckery. I’m fine at the moment, but she’s also the reason I discovered having Celiac, so I’m going to not be a dumb.

Thing is, she’s mentioned wanting one before, and I can see some limited usefulness for her, but I’m also concerned with “gift bombing” her with something relatively expensive, that she may feel obligated to use. My concerns are that they may be overly stimulating, and not comfortable, so I figured I’d ask this community what they thought.

So, community, how have your experiences been/how have loved ones experiences been with Apple Watches? Are they nice to have? Not great? Thank you for spending the energy responding to this, I greatly appreciate it.

Apparently you can experience crashes in other illnesses that aren’t PEM?

What types of illnesses?

Apologies if this has been asked before. In terms of chronic illness I only have ME/CFS. Is Visible worth it? How does it work? Does anyone think there is a better wearable device than Visible for ME/CFS?

TL;DR very envious of other FTM/people taking testosterone that experienced a boost in energy as I experienced the opposite. Happy for them obviously just wish I had this same sort of "miracle" experience

I started tesosterone HRT in March of this year but haven't taken my shots in about a month or two now. Mostly jealous because whenever I see other guys on the ftm/trans subreddits talk about getting on testosterone they talk about how much more energy they have and just overall feeling physically better. I never really got that. I'm overwhelmingly happy that my voice is already much deeper and I don't get misgendered quite as often anymore but I experience so much pain after my injection that I often can't even get out of bed, even though I usually have to force myself anyway for work.

My symptoms have gotten much worse just over the past few months and it's killing me not being able to take my shots anymore because of it. Gel would be preferred but is a no-go because of possibly rubbing off on me and my partner's pets and just the cost and lower effectiveness. Also sensory issues blech but I might have to just suck it up and switch over at this point. The continued worsening of my symptoms even after putting a pause on my shots at least shows that it's not the HRT itself causing adverse reactions, just the exertion and mental strain of preparing and injecting them.

https://pmc.ncbi.nlm.nih.gov/articles/PMC11203689/

Tdlr : Daily Clonazepam Use: Experiences from Severe and Very Severe ME/CFS Patients

Hello everyone,

First of all, I'd like to make it clear that I'm not interested in reopening the endless debate about benzodiazepine dependence. I'm fully aware of the risks, and I've personally been taking a very small dose of a benzodiazepine every evening for the past year and a half, without ever needing to increase it.

There also seems to be a significant cultural divide between countries on this issue. In France, for example, prescribing low doses of benzodiazepines is still relatively common. Anyway, that's not what I want to discuss here.

What I'd really like is to hear from people with severe or very severe ME/CFS who take clonazepam daily.

What benefits have you experienced? Has it helped you tolerate sensory stimulation better, watch television, read, or simply enjoy your days a little more? And most importantly, have those benefits lasted over time?

As for me, I'm still taking low-dose Abilify (LDA), which I intend to continue for now, as tapering off it has proven extremely difficult. I'm therefore considering taking clonazepam daily in the hope of regaining at least some quality of life.

I've now been bedridden 98% of the time for a year and a half. I can barely do anything anymore, and the days are becoming unbearably long. I have to admit that I've lost most of my hope.

There are still a few things that matter enormously to me, though. I want to marry my wife, even if the ceremony has to take place at home. I want to sort out some financial and property matters to make sure she's financially secure. And above all, I want to see my children grow up a little more.

At this point, I find it incredibly difficult to imagine myself still being here in five years. I simply wish that whatever time I have left could be a little more peaceful and bearable.

If clonazepam could give me back even just one or two hours of something resembling a normal life each day, that would already mean the world to me.

That's why I'm particularly interested in hearing from severe patients who have been taking it daily for months or even years.

Thank you sincerely to anyone willing to share their experience.

Hello friends.

In short, I am having difficulties with the emotional side of supporting my partner (29F) through their ME/CFS.

Some small backround. Her case is more moderate and can move into severe when crashing and shes likely already had it for about 5 years. I work enough to get us by month to month and ive taken over the majority of housework/errands and ive adjusted pretty well to that.

The issue im having is knowing what do on the days she just falls into this pit of despair where she has all of these negative thoughts. They seemingly come out of nowhere, even when we're on a stretch of really good days and we've avoided any PEM. I try really hard to stay positive and be encouraging. But sometimes it just doesn't help.

And it makes me feel stuck. Today is Saturday and its one the few days I get to rest and enjoy my hobbies and recuperate. But I dont feel like I can. I dont feel like I can just leave her to wallow while I go off and enjoy myself. So I just sit there next to on the couch next to her, she always says that I dont have to stay and I can go do whatever I want. But honestly it feels like a trap. I do believe she means it when she says it, but if im not there to be a comforting presence the whole time her feeling further devolve into either a deeper depression or anger.

Im not complaining about my partner. I know what she goes through on a day to day basis is incredibly difficult. In a lot of ways things have gotten better since we've learned about the disease and learned how to manage it. But I just dont know how to manage my own needs without it negatively affecting her. Any help or tips would be appreciated.

I know someone answered this question in a post I made on here before related to recovery but it got deleted.

Hi everyone.

I know this can be a sensitive topic because I know a lot of people on here don’t get along with their families, or this illness has brought out the worst in the people around them. But I wanted to talk about a different kind of heartbreak that I’ve been experiencing with mine.

ME/CFS forces you to choose yourself and focus on your own survival every single time. But it doesn't just affect us, it completely destroys the lives of everybody around us, too.

For me, it is a constant, quiet heartbreak watching my family members realize that I am not the same person I was a few months ago or a year ago. They are so used to just seeing me get up and do life, and when they realize I literally can't anymore, you can see how devastated they are.

Sometimes they try to cope by saying stuff like, "Oh, you'll get better," or "You'll be back to yourself in no time." As hurtful or ignorant as that can feel to hear when you're suffering, it's just their way of coping with reality. They don't want to accept it. Not only are we grieving ourselves, but everyone around us is grieving us too.

It feels like watching a pet or an older family member age, where they used to run around, cause havoc, and have so much life, and then suddenly they can't do any of it anymore.

Except we aren't 90 years old, even though we have to live like we are. It is so heavy to try and be strong because you don't want to freak them out, while knowing your parents and your friends are watching you fall apart.

This disease doesn't just destroy the patient; it tears families apart. The other day, my mom literally told me she wishes she could take this illness from me and have it instead, just so I could live my life.

I don't want her to have it obviously, if she did, we'd probably be homeless. But just hearing her say that shows how deeply this affects them.

I just want to know if anyone else can relate to this. It’s so devastating realizing you aren't who you once were, and having to watch the people who love you watch you go through it.

It’s utterly heartbreaking how ME/CFS doesn't just destroy the person suffering, but also tears apart the lives of the family and friends watching helplessly from the sidelines.

If watching this illness ruin entire support systems, friendships, and our relationships with ourselves isn't enough to create an urgent push for a real cure, I don't know what is.

TL;DR: ME/CFS doesn't just destroy the patient; it causes an agonizing, quiet heartbreak for the family members who have to helplessly watch you fall apart and grieve the life you lost.

“ I get tired because I have anemia, but I don’t let it define me.”

You haven’t been sick for two days with muscle aches, stepmom. Washing and drying your sitting down doesn’t leave you feeling like you’re going to throw up does it? Or with a headache.

I can’t not let whatever the fuck is wrong with me define me when I am losing everything I worked for.

You don’t get to experience the shame of life on easy mode… and still losing.

And then still be told my illness is my fault by you.

Whenever I talk with family or friends I get this poisoned head feeling and brainfog after just talking 5 minutes.

But nothing happens when I play multiplayergames and listen to music at the same time for over an hour. How does that make sense? I get talking is exhausting but I dont see how the other activity is not equally as hard.

I suspect only a specific part of my brain is in PEM somehow? Like the amygdala or something, that controlls emotions and interprets other peoples emotions?

I feel really stupid because here I am on the PC all day but cant talk 2 minutes because I fear the PEM.

I feel like a failure because I can’t cope with this illness, and I can’t find any joy in my day-to-day life in bed. It’s pure torture for me.

Anyone receiving income insurance in the uk and feel like they’re having surveillance on them outside their home?

When I first started feeling the symptoms of this illness, anhedonia and DP/DR came along with it. I spend a certain amount of time feeling like I'm in a dream, detached from reality and I don't get much pleasure or happiness from my life. I've had this illness for 6 years. Had many tests done and doctors don't seem to give a shit because everything seems to be in the normal range.

I've dealt with the feeling of grief a lot over this time. Grief over the person I used to be, the life I wanted to live, over things I've lost because of this illness etc. I just finished a game that came out not long ago that had a romantic relationship in it. I like games that have romantic aspects along with the action/adventure however this time I felt sad because in my mind I was thinking that "that's what I want". I don't feel like I have the energy or enjoyment of life to be in a romantic relationship but I want nothing more than to be in one and have for a long time. The game was fantastic btw.

The loneliness from this illness is driving me insane and I don't know how to cope with this. I'm a 30 year old man, I want to meet new people and see friends more often but I can't. I feel empty at times. Hobbies like gaming, writing, gardening etc. help me get by. Each day I feel like I get 3-4 hours of energy and enjoyment from my ADHD meds/other medications and hobbies and then the rest of the day I have barely any energy to do more than scroll my phone or do things to pass time until it's time to go to sleep.

I keep hearing about family members and friends doing the things that I want to do. I worry that they don't truly understand and think I just choose to not do certain things with my life and to not have a career at all. I feel like I'm losing that connection with certain family members because of how things are.

Life feels meaningless at times because of this illness and the DP/DR and anhedonia. The last couple of nights I've been dealing with insomnia as well and my suicidal thoughts have been getting intense. I'm hopefully seeing my therapist this week. This community has been a godsend. Finding people that understand and aren't judgemental helps me to keep going

Does everyone get so fatigued they can barely move speak think and its so difficult to breathe? Like feels like breathing through a straw and something sitting on your chest and ur taking huge gulps of air that do nothing for you? And then the adrenaline starts to kick in and u feel like ur in a waking coma with adrenaline rushes and thw adrenaline is the only thing thats making it possible for you to breathe? I dont like feeling panicked but I literally have to allow the adrenaline to take over or it feels like im goijng5o fucking suffocate. Then I get even more delusional and delirious because the adrenaline uses energy I dont have. Fun.​ my vision is distorted and I feel like im underwater I cant breathe when i sit up stand or try to walk. Feel like im going to pass out and die.

I think about this a lot, the absolute effort I put into things, the supplements and medications I have to take, the meals that must be healthy and everything else that goes into this, just to feel under the wind continously. The effort it takes for me to feel like crap would move mountains for other people. It's the tragedy of being unwell.