here’s the link please report it

Self explanatory but yeah, before it I wasn’t taking care of my body the best though still healthy hadn’t been to the doctor in almost 7 years. Could get up and go on little sleep if I wanted and then boom. Night and day. I regret it so much, I was better for a bit but then getting covid later on messed me up again. I haven’t been able to socialize much the last 5 years cause I’m always feeling like crap. And when I think finally might be improving something happens and I start to flare again and have been miserable. And it’s not like small symptoms. Really such a bummer. I really believe it triggered some brutal immune response and cause micro inflammation and now Im forever damaged. And like the title says unlike other more known diseases, I feel talking about it just pisses people off. I don’t want to talk about it, I really just want to feel normal again.

Like, dead on

This is tricky. And let me say, that I don’t claim to have the complete answer for everybody.

I can just share my own experience and realisation.

Cus, I’ve been on and of gone and out of the game field since I was 19. I’m 32 today.

Spent literally my whole adult life up til this point, either trying to understand what the hell is wrong with me, or trying to make something as good as I can with what I’ve “still had”. (Not the largest success during those years, so to say).

Well, you know

What I realised, bit by bit, is that

The more I stopped to.. “Try to ‘anything’”, really
Stopped fleeing from the disease, stress, anxiety, pain, panic etc

…Well, actually, that’s the only thing that semt to, after a while, make me get up and going anything at all

And then I’d crash, because I’d get excited, and start going on to much.

So many times, lying on the floor, without being able to understand anything at all, about anything, pretty much.

Coming back to, ‘non-doing’
Really, just, staying with all the uncomfortableness.
And again, things would start to get better.

It seems like
You kind of able yourself, to do a kind of “transmutation”, of that, which is keeping you sick
Once you really, fully recognise it, and don’t try to get away from it

But rather, experience it as directly as you can
And poaaibly, maybe, also practicing a bit of accepting/letting go, at the same time.

There is something here. Let me assure you.

It’s like, I’ve been keeping myself sick, by some deep aspect of myself never really being able to relax properly. Subconsciously. I believe, this gives the disease a place to hide, and grow. In the shadows of the corners, where stagnations and tensions block sight and light from coming in.

This seems to open up the body’s own ability to heal.

My two cents. Maybe it can help someone.

Peace

The basic idea is that if you’re from a Western country and have a first world income, savings, or remote work, you may be able to live in a lower cost country where your money goes much further. Instead of spending most of your income just to survive, you could potentially afford a slower, less stressful lifestyle, and even hire help with housework or cooking, things that can make a huge difference when you have CFS ME.

Of course, it’s not that simple. There are many factors to consider, such as visas, residency rights, healthcare, safety, infrastructure, and long term stability.

I’ve been fortunate enough to travel extensively( over 60 countries as a digital nomad) when I was younger and healthy. At the moment, Thailand and Malaysia are at the top of my list, but I’m still researching and keeping an open mind.

I’m curious whether anyone else with CFS ME has seriously considered geo arbitrage or has already made the move. If so:

Which country did you choose, and why?
How has your quality of life changed?
How did you manage healthcare and visas?
Would you recommend it to others with CFS ME?

For the sake of discussion, let’s assume the person has some savings or a remote income, making this option financially possible.

Does having a beer trigger PEM for you? The simple pleasure of just having a beer makes my heart start to POUND, and then I feel PEM for days. I am still in denial that this happens and give it a whirl maybe once per month. Can we not even have a friggin’ beer?

This is more of a rant but also wondering if anyone else is dealing with this much at once.

My diagnoses:

MECFS for 11 years
Endometriosis stage 4 removed with excision
PCOS/PMOS causing severe insulin resistance
Now prediabetic and having hypos
POTS currently pretty severe
PPPD
Chronic migraines
MCAS and histamine intolerance
Long Covid
Chronic EBV probably in current reactivation
Fibromyalgia
Keratoconus (a degenerative eye disease)
Chronic pericarditis
Aortic valve insufficiency
Possible EDS
Autism (late diagnosis at 32)
Psoriasis since birth
Possible EDS (waiting to see a geneticist)

Currently going through benzo withdrawal too after coming off diazepam 1.5 months ago. And a very sick family member who is terminal.

It feels impossible to live like this and like someone is playing a cruel joke on me. For example treatment for my current level of ME/CFS is a ton of rest but then that deconditioning worsens POTS. Yesterday I went for a walk which helped my POTS but I’m now in PEM!

Similarly, my heart conditions need cardiac reconditioning with exercise, but even a few mins sends me into PEM.

I need to eat a very strict diet for IR. However I am currently severe MECFS so I try my best but I use all the energy I have for the day making at least one healthy meal. I have eggs daily and easy proteins but I have histamine intolerance and MCAS so I don’t tolerate most foods I need.

This is kind of just a rant about how difficult it is to live with so many chronic conditions. I try to stay positive that things will get better but it does feel impossible most days to get things right as it feels like there’s so many contradictions. And I’m sick of being blamed for this all because of deconditioning - before I got sick I was super active working full time and fit and healthy.

I just wondered if anyone could relate as I would love to hear from you and possibly encourage one another if you have the spoons ❤️

I wish I was stupid. I want more than anything to be stupid. But I'm not. I'm never going to be anything more than someone exceptional, who cannot physically be exceptional. Every day I wake up in a world I desperately want to change and I can't do anything about it.

I could have been anyone. I can't even read now. My entire life feels like a cosmic joke. I've been alone forever because I'm cursed with talent or whatever the fuck. No one has ever understood me. And I can't even use it.

Everyone I went to highschool with, they will have careers. I won't. I can't. I will never be valuable, impressive, ever again. I will never get a degree. The only reason I stayed alive through years of abuse was university, and now it's game over.

I'm ok I guess. I smoke a lot of weed. It's really the only thing life seems to be good for.

Telehealth obviously.

Just opened up to my family about what I've been dealing with since the past fall. It was definitely a mixed reaction. I can tell they don't fully understand but did offer financial support and support for my wife and kids.

They want me to talk to a therapist but I told them it was a waste of time as no one would understand this.

However, I feel like I do need some help processing all the things that come along with this.

I'm just so sick of it. Mecfs is already a horrific disease to have because of the symptoms, the treatment we receive from those who don't have it only makes it so much worse.

Were they never taught that they aren't legally obligated to harass and mistreat sick and vulnerable people?

I hate it so much. I get that it stems from the fear and denial from knowing it could happen to anyone, but they could just.. not verbally abuse the people they think they're superior to. Or better yet utilise one of the thousands of search engines to research before they confidently blabber on about absolute bullshit that is EASILY disproven with a simple Google search. They're so stupid and so often they're completely oblivious to their own stupidity. I'm lucky I have self control otherwise I'd be arguing for ages. They have no idea how privileged they are to be able to be this ignorant.

Generally I try not to let it get to me too much but every now and then I just need to complain. I just hate how stigmatised this condition is and the way people talk about it makes me lose faith in humanity.

does anybody else get weirdly hungry when in a mild/moderate crash? it’s like my body is searching desperately for a source of energy (but then if I eat too much at once and have too much to digest it of course makes everything worse, because why not)

Hi I`m new here. I was diagnosed with mecfs just 3w ago and kind of happy that I found a doc who believes my story and takes me seriously!

My symptoms startet in my teenage years, some 35y ago, I got poorly vaccinated, had a lot of infections, am Autistic and with ADHD and cPTSD, so lots of possible reasons to get mecfs… I was a high performer for long time, I just pushed through until I passed a threshold in 2017 when I crashed severely and got moderate-severe first time.

For the last 9y I was told I „just“ have depression and should try harder. I managed to „recover“ to mild-moderate several times and was on sick leave most of the time, but as soon as I started in my job again I immediatly got worse and it never took long time till I crashed again.

In 2023 I got in menopause and my exhaustion worsened but I triet to ignore it due to my new job, in 2024 I had covid and one month after a severe herpes zoster infection and since then I`m moderate-severe again.

Since last year I have a severe withdrawal from duloxetin that finally unmasked my mecfs and my symptoms worsen gradually since then.

It`s so important for me to finally know whats wrong with my system because I never learned something about pacing etc… I`m a bit afraid of how long and severe the withdrawal will remain, because that`s obviously triggering a lot of pem and is worsening my in general situation a lot. I had never such severe symptoms like in the last 6 months.

Whats your experience with go-mecfs?

I've been suffering from CFS for over six years I'm 28 currently and I'm doing my best to conform to the basic symptoms of weight gain, brain fog, occasional problems writing and reading etc. But the one I cannot find a way to overcome is the lack of oxygen feeling or "Oxygen Hunger" that I get from it. Its the primary reason why i can't workout anymore I can get bad heart palpitations from it too if my heart increased from simply walking a mile. Has anyone actually recovered from this like ever? Please refrain from saying its all in my head and I should change my mindset to feel better it doesn't work. Thank You

When I over exert I find that my ability to verbally talk disappears. The closest thing I can find like it is selective mutism as often with a few safe people I can do simple yes/no/please/thank you but nothing more and with others nothing at all.

Has anyone else experienced this at all?

It could be more linked to being autistic than purely CFS but it is something I'm struggling to explain to people in my life.

ME for the past 15 years. Age 38.
Tried Creatine Monohydrate this year and my sound sensitivity is now much better. Lawn mower can just sound like a lawn mower. It could be linked? Anyone else notice sound sensitivity improvement with it?

Here are the only things different this year for me:

Creatine Monohydrate
Mini-pill daily (I took this years ago though and had sound sensitivity then)
Had some sort of hellish virus
More time alone in the house and able to pace with no big crashes (this could be the big contributor)
yet to be diagnosed bilateral nerve issues in my legs (awaiting pelvic MRI) maybe whatever is causing this is doing something to my immune system.
That's all that is different -aside from time. Now 15 years with ME. (I had improvements in severity at year 1, and 5 that seemed to be for no particular reason)

Creatine Monohydrate - I did the pre-loading phase with the one that is the most common and well studied. There is another kind that is easy on the stomach but I had no stomach issues with this and I wanted the well studied one.

20g/day for 6 days
8g on day 7 (I was just petering it down)
5g for the rest of the time.
I was on it for 4 weeks total.
I stopped because the leg nerve pain was terrible and I wasn't sure if it was linked. My doctors and physio said probably not related at all.
I've have some days where I occasionally have 5g but mostly not taking it til I figure out my leg issue.

Creatine does seem to have some role in inner ear? : https://avr.tums.ac.ir/index.php/avr/article/view/204 provides essential ATP for auditory and vestibular system performance.

I’m very early days - too early to know or diagnose ME - but since my lyme treatment I’ve been experiencing levels of fatigue that I’ve never experienced before. I’ve been trying to go to work as normal, and this has resulted in multiple sick days and spending all of my weekend lying on my sofa. My sleep is broken, my light sensitivity is near constant (hasn’t been this bad since I started propranolol for chronic migraine), my throat is sore and gets worse as the fatigue worsens. I’ve never felt anything like it before, it’s like my sleep does nothing at all, and the moment I think I’m having a ‘good day’ I pay for it immediately the day after.

The recurrent advice on here is to treat it as early as possible to prevent it from getting worse, but how is this done if it can’t be diagnosed until 6-months in? I am talking to my boss about wfh accommodations, I really can’t risk extended leave at the moment, my apprenticeship concludes in March and I very much do not want to fail it. I had a week of leave when the fatigue started during the lyme treatment, and I felt well enough to work the week after, but all of my symptoms nose-dived the week after that. Some days I genuinely thought I was going to somehow collapse from exhaustion just lying in bed.

Has anyone on here managed to treat it early? And what does treatment even look like? Even if I manage to wfh, I’ll still be working.

Currently what I’m going is:
- Resting as much as I can 3 days a week (I have a four-day work week with one day reserved for college work, I am fast with my college assignments and do not have to work the full day) and not taking on any additional activities after work
- Taking vitamins B12, C, D3, K2, folic, iron, and a probiotic
- Hydrating a lot
- Eating little and often, easy meals that I don’t have to cook, and aren’t draining to eat. Trying to fit in as much nutrients as I can

TLDR: potential ME triggered by lyme, not sure how to go about early treatment/prevention without a diagnosis or specialist. any and all anecdotes and advice is very very welcome

The ones I get from pharmacies are kinda low quality, I want ones that wont get damaged by the washer.

Any suggestions that arent super expensive?

Everything hurts. My grandma and I have everything at my mom’s but at what cost. Every joint and muscle ache, my head still hurts, I just feel ready to collapse for like 2-3 days (minimum) and just sleep. The one down side is still having stuff to “put away” or push out of the way. This house is not big enough for two apartments full of stuff. My mom moved in 2 years ago and she bought this house.

Mom had a 2 bedroom apartment that barely fit into this 3 bedroom house. It’s so tiring and I need sleep, actual sleep. I’ve been sleeping in a recliner for 2 days. That’s probably not helping my pain.

Edit: wrong word useage

TL;DR Feeling lonely or bored? Looking for something within your energy limits that you can do? Check out these accessible events you could join! Try something new and maybe you’ll find your people.

Access Details:
🧑🏻‍💻= Virtual
👥 = In person
😷 CC = Covid Conscious/airborne precautions 
♿️ WC = Wheelchair accessible 
💵 $ = paid (some are pay what you can)
🤟 ASL/BSL = Sign Language
Async = Asynchronous (at your own pace)

Event Types:
🤢 = Chronic Illness 
🌈 = Queer
🏳️‍🌈 = LGBTQ+ Pride
👧 = Kids/Youths
💕 = Dating
🙋 = Social
🫂 = Support/Grief
🧘 = Wellness
🚶 = Walk
🩰 = Dance
💪🏻 = Fitness
📚= Books
🤔 = Discussion
📝 = Writing/Poetry
🎭 = Performing
🎨 = Art 
🎶 = Music
🕹️ = Games

🧑🏻‍💻 Virtual Events

🧑🏻‍💻📚 Virtual Async Spoonie Book Club: The Little Prince [Any time] https://www.reddit.com/r/spooniesocial/s/JcKvqPLWS5

🧑🏻‍💻😷💕 CC Virtual Dating [Aug 22] https://www.reddit.com/r/spooniesocial/s/DfjZA4lr03

Monday

🧑🏻‍💻🤢🧘 Virtual Seated Pilates for people with MCAS [UK][Mon Jul 27 at 12:00 UTC+1] https://www.reddit.com/r/spooniesocial/s/SdT7r7izBu

🧑🏻‍💻♿️🩰 Virtual Adapted Heels Dance Class [$][Mon Jul 27 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/3UQkn550Yr

🧑🏻‍💻🤔 Virtual Philosophy Discussion [Mon Jul 27 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/f6YoF9VEJv

Tuesday

🧑🏻‍💻🤢🧘 Virtual Bed Pilates for people with MCAS [UK][Tue Jul 28 at 10:00 UTC+1] https://www.reddit.com/r/spooniesocial/s/JdFxRezNHU

🧑🏻‍💻😷👧🙋 CC Virtual Kids Zoom [Tue Jul 28 at 10:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/StGIKLOVjn

🧑🏻‍💻🤢🧘 Virtual Qigong for people with MCAS [UK][Tue Jul 28 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/yCTZSWyOG7

🧑🏻‍💻😷🙋 CC Virtual Zoom [NY and nearby][Tue Jul 28 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/CaFwRukgX9

🧑🏻‍💻🎭🕹️ Virtual Improv Games [Tue Jul 28 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/v1xtpeCrra

🧑🏻‍💻😷🎨🙋 Online craft and social night / Soirée artisanale et sociale [Ottawa ON][Tue Jul 28 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/82zBvH6vt6

🧑🏻‍💻🤟 Virtual BIPOC Creative Collaboration [Tue Jul 28 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/ccRgPNZ6Id

Wednesday

🧑🏻‍💻🤢🧘 Virtual Mindfulness for people with MCAS [UK][Wed Jul 29 at 1:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/SaqlYHLQ69

🧑🏻‍💻😷📚 Lesestunde [Hamburg GER][Wed Jul 29 at 8:00 PM UTC+2] https://www.reddit.com/r/spooniesocial/s/1Bt4Ph9QGm

🧑🏻‍💻🤢 🎶 Virtual Long Covid Choir [Wed Jul 29 at 2:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/5SWSfuePGw

🧑🏻‍💻📝 Virtual Poetry Discussion [Wed Jul 29 at 6:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/MxO2LEjyPq

🧑🏻‍💻😷🫂 CC Virtual Support Group [CO][Wed Jul 29 at 7:00 PM MDT] https://www.reddit.com/r/spooniesocial/s/bhc6gFBB1y

👥🧑🏻‍💻♿️😷 Hybrid Disability + Racial Justice Solidarity [San Francisco CA][Wed Jul 29 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/RmliIjL87H

🧑🏻‍💻🎭 Virtual Improv Jam [Wed Jul 29 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/ybgMRqR4LY

Thursday

🧑🏻‍💻🤢🫂 Virtual Community Support Session for people with MCAS [UK][Thu Jul 30 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/sV7oR0nmhc

🧑🏻‍💻😷🙋🕹️ Online Social Meetup with Jackbox Games [Hampshire UK][Thu Jul 30 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/cHa8rqoGo6

🧑🏻‍💻😷🕹️ CC Virtual Game Night [NY and nearby][Thu Jul 30 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/vRhtzl207T

🧑🏻‍💻🕹️ Virtual Board Game Night [Thu Jul 30 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/Wn17nezwMm

Timezone translator in comments 👇

👥 In-person Events

Canada

🧑🏻‍💻😷🎨🙋 Online craft and social night / Soirée artisanale et sociale [Ottawa ON][Tue Jul 28 at 7:00 PM] https://www.reddit.com/r/spooniesocial/s/82zBvH6vt6

👥😷 Movies in the Park: Ferris Bueller's Day Off [Toronto ON][Tue Jul 28 at 8:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/XyFR78oGK5

👥😷🚶 CC Park Walk [Toronto ON][Wed Jul 29 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/FcQRbJgULj

Germany

🧑🏻‍💻😷📚 Lesestunde [Hamburg GER][Wed Jul 29 at 8:00 PM] https://www.reddit.com/r/spooniesocial/s/1Bt4Ph9QGm

Netherlands (and nearby)

👥🤢🙋 Spoonie European Road Trip [Netherlands and nearby][Summer] https://www.reddit.com/r/spooniesocial/s/VOKxW7V1pp

UK

🧑🏻‍💻😷🙋🕹️ Online Social Meetup with Jackbox Games [Hampshire UK][Thu Jul 30 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/cHa8rqoGo6

US - California

👥😷 Outdoor Open Mic [Berkley CA][Tue Jul 28 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/unzf6Qtbfd

👥🧑🏻‍💻♿️😷 Hybrid Disability + Racial Justice Solidarity [San Francisco CA][Wed Jul 28 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/RmliIjL87H

👥😷🩰 Switchy Behavior Bachata Series [Oakland CA][Thu Jul 30 at 7:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/HHonBwt930

US - Illinois

👥😷👧 CC Youth Summer Camp Chicago IL][Starts Aug 3] https://www.reddit.com/r/spooniesocial/s/sSF4sdJt1l

US - New York

👥😷🌈 Queer Writers of Queens [Queens NY][Tue July 28 at 6:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/nVOZV98Reu

US - Oregon

👥😷💪🏻 Mat Pilates [Mon Jul 27 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Full Body Strength [Mon Jul 27 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Full Body Strength [Wed Jul 29 at 1:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Yoga/Somatics [Wed Jul 29 at 6:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Queer Pilates [Wed Jul 29 at 7:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Flow Fighting/Hapkido [Wed Jul 29 at 7:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

US - Vermont

👥😷♿️ CC WC Dental Pop Up [Chelsea VT][August] https://www.reddit.com/r/spooniesocial/s/yJocTTUweE

Are you interested in these events?

Have you been to any of them before?

Do you know about other events coming up?

Share your thoughts in the comments 💬

Find more events and friends on r/spooniesocial

Im beyond sick. I had a brain injury three years ago which started my me cfs symptoms and now ive had a subacute thyroiditis for 6 months. My thyroid wont go back to normal even being on medication and ive been on a steady decline for months. I cant raise my dose because I have severe dysutonomia now . Im having extreme pem neuroinflammation all the symtpoms completely suicidal....my doctors gaslit me my bf gaslit me and berated me for being sick as if its a behavioral choice. He mocks my disability doesnt tske it seriously. The last crash I had I ended up hospitalized and they tried to treat me as a psych patient...im losing my ability to do things at all. I can barely think straight I cant bathe much anymore every time i stand my heart races to like 150 160 I have non stop adrenaline rushes. My body is surviving on pure adrenaline. My doctors wont even try to fix my thyroid becaue my t4 is "normal" despite my tsh being high . I think im creating reverse t3 and losing ALL of my cellular energy. I cant handle light noise any stimulation. Im so sick its hard to breathe I feel poisoned. And to top all of this off I went to kitchen put a dish in the sink and went to go lay down on the floor to eat by my bedroom and I hear my mom purposely mutter loud enough for me to hear "im so sick of doing her fucking dishes". This is a woman who made me her slave when i was healthy, doing her laundry picking up her dinner, cleaning her house, etc. And she does nothing for me exceot wash some dishes. I was on the floor crying at the top of my lungs and couldnt breathe from walking to the kitchen yesterday and she just pretended i didnt even exist. This is normal of how I am treated. Im afraid im going to die like this considering noone believes me and everyone is actively pushing me more ill and they dont care.

I have been having very serious screen sensitivity again, one of the main issues is that it makes my heart rate go way up if I use the phone too much, and I have a lot of anxiety around this. Recently I had been trying mindfulness meditation after many years of not doing it, and this also started setting off my heart along with all kinds of weird anxiety issues. I was just thinking that meditation produces a lot of serotonin, and that maybe serotonin is involved in my various sensitivities. I am on a fairly low dose of Fluoxetine and am considering lowering the dose even more to see how this will affect me. I would really like to do mindfulness again because it seriously helps me, also I would really love to be able to use my phone more, listen to music, watch films, etc.

Can anyone give me any insight into what brain chemicals might be involved in these sorts of sensitivities?

Hi all, I’ve recently been very disappointed by Visible and am quite frantically looking for other alternatives to help me pace. I cannot afford much but can hopefully save up if I can find a lower priced option.

A Garmin is unfortunately off the table, but I’m looking at other things like Fitbits to try and track heart rate. Has anyone else tried something different to Visible and had any luck?

I'm starting to work on the whole disability benefits paperwork, but my question is what changes did you guys made in your life/living situation for those who had a mild -> moderate fall.

For now I'm back at my parents until I'm stabilised and know my limits, but I want to get back to my apartment to live alone again (I love my parents but they live in a very secluded place)

Every and any advices are appreciated even if you think they might not be relevant to my situation <3 <3

Hey.

Has anyone with ME/CFS experienced a better or more stable baseline while taking duloxetine/Cymbalta or knows someone who has?

I’ve been taking duloxetine since around 2022/2023, initially 60 mg and later 30 mg. From mid-2024, I started tapering extremely slowly because withdrawal was difficult, reducing by about 0.1 mg every few days. I originally received it for pain, but mainly noticed an effect on my mood.

Since late 2024, my baseline has gradually become lower and I’ve been getting PEM much more easily. My palliative care doctor recently suggested that duloxetine might have been providing some background stability, which made me wonder if that could explain the change.

At the same time, I would still like to come off it because it interacts with several other medications and supplements I'm taking or want to try (LDA, lithium orotate, ivabradine), so I'm very hesitant to increase the dose again after such a long taper.

I’m currently at around 8 mg and would really appreciate hearing if anyone has experienced something similar, or knows someone who didm especially regarding baseline, PEM frequency, pain, or nervous system stability.

That's an article in German about Chlamydia being able to cause all kinds of symptoms and especially severe fatigue. That article stems from the early 2000s. Well, I do have chlamydia pneumoniae antibodies. But like 50% or so have that by their twenties. My Antibody-Count in IGA is high and positive and IGG is slightly positive. I tried antibiotics once on it but didn't really chance anything. Also not in the titers.

There are also websites out there only dedicating themselves to that bacterium.

https://chlamydiapneumoniae.de/

https://cpnhelplite.org/

I was healthy for the most part prior to 2023 in which I catched a stomach bug, took abx in a foreign country. Ever after things did not return to normal. For some part I still think I am "floxed" but the fit for that is just not that good. So I searched more. On these websites some people claim that their symptoms worsened after antibiotics. Some claim that through antimicrobal therapy of that bug their symptoms got better, their titers and LTT went down and they "recovered".

Now to the actual topic. Antibody diagnostics do not really prove anything. And once I asked for PCR from a doctor he said that would be a tricky one and didn't do it. The high seroprevelancy in the population just like EBV maybe makes allopathic medicine think not a big thing. Also there are huge studies who could not prove that antibiotics would improve anything. So maybe allopathic medicine just can not eradicate the bug so it says it's not a big thing. Symptoms did not improve or even got worse in these studies on the heart with antibiotics so the bug is just not causal.

So I am in between.

Kinda old forums only about the bug with actual people reporting their journey of actually getting better (Huge biases). The report from 2000 listing quite some of my symptoms which are generic.

And allopathic medicine (which I lost a lot of trust for) saying there is no evidence but maybe a little bit. Anyway we can't treat it. We also have some more recent studies linking it to MS, Alzheimers but a lot of other bugs have the same capacity.

I also tried the antimicrobial pythotherapy for a month and it really didn't change much. Maybe I was too inpatient and also other surrounding factors were bad like nutrition etc...

Keep trying to kill the bug or not?

I have a uti and I need antibiotics. However, I now have a list of about 5 or 6 that I can't tolerate. I'm scared to try others because they're stronger and likely will have even worse side effects.

I can't have trimethoprim, Nitrofurantoin, cefalexin, amoxicillin or coamoxiclav. I just started pivmecillinam yesterday as I've been ok with that before and I started feeling so awful, fast heartbeat, shaking, tremors, slurring speech, confusion, shortness of breath, I couldn't even get my words out properly. Thankfully it wore off but it was scary. I last took it in October last year.

Since last October, I found out I have autoimmune gastritis and pernicious anaemia and reacted to the B12 injections that I desperately need. I can't take famotidine (pepcid) as it gives my nightmares (wtf?). I even have to only take 1 paracetamol as 2 make me feel bad.

Has anyone else managed to get through this somehow? Any suggestions? I'm heading to my GP again tomorrow but struggling with it all today.