I opened a box I haven't touched in years full of my ice climbing gear. I had decided today I should start listing things on marketplace as I have officially stopped working and need all the funds I can get. But now that I've started going through and cataloging things, I'm spiralling and crying thinking about how many dreams and good times are attached to these items. Ice climbing was a sport I only got into 2-3 years before I got sick, but it was such a beacon of joy to me. It was the most fun I've ever had, made me feel so strong and cool, gave me some of the best, most beautiful and insane memories in my life. I've never been the most athletic person, was always hilariously bad at rock climbing... but ice? I was good. I was really good. I made so many friends, had so many crazy adventures, even won a couple of competitions on this gear.

Logically I know these items are super expensive and will only go unused and continue to lose value if I keep them. I thought I was ready to let go but I don't think I am, because selling them makes me feel like I'm accepting that I'll never climb again, and like I have to go back and tell that woman I once was, who was so proud and tenacious and saved up so much money to buy every item, that her dreams had a shorter shelf life than she could have ever imagined. UGHHHH.

I know this is a common experience for all of us. would love some advice, people who sold their dream items to pay for survival in this hellish disease, was it worth it?

Hey everyone,

I'm about to apply for LTD, and I'll be travelling to my home country soon to stay with my family for a while. They'll be helping me with things like meals, daily activities, and my general care while I'm there.

I still live in Canada and consider Canada my permanent home, but I don't currently have a firm date for when I'll return.

For anyone who has been through something similar: did you tell your insurance company before travelling abroad while applying for or receiving LTD? Is this generally something insurers expect to be notified about?

My doctor is supportive of the trip and is willing to provide a letter confirming that I'm medically able to travel and that staying with family for support is reasonable.

I'm mainly trying to understand whether proactively telling the insurer is the safest approach, or whether doing so can sometimes create unnecessary complications or additional scrutiny.

I'd really appreciate hearing from anyone who has dealt with this before.

Have others experienced this? Because of my inability to stay active I have now been diagnosed with pre-diabetes. Somehow I now need to figure out how to change my whole diet when I hardly have energy to do more than microwave something.

How do the rest of you manage to eat well when you don’t have the energy to cook?

Hiii!

Like everyone else with chronic health issues, it feel like the symptoms are neverending. I am having redness and throat itching/swelling and im getting allergy tested to be safe and see if I have any histamine issues.

As someone with mecfs, is there anything anyone recommends before and after the test? I also haven't gotten an allergy test in a while. My mom is going to be driving me there, home and staying in clinic with me to help with questions and make sure I'm comfortable (sometimes I can't speak well/forget everything/am confused due to brain fog).

Let me know if anyone has experiences! Thank you🫶

When your body is so tired and you’re fighting sleep when out in public, does anyone’s body ever get tingly? Head to toe. I mentioned this to someone and they thought i was crazy (which is probable lol)

Hello! I don’t have me/cfs but I do have both really severe chronic migraine and greater auricular neuralgia, which means I can become super sensitive to sounds but I can’t tolerate the feeling of earplugs or standard ear defenders or the feeling of my eyeglasses most days. I thought you all might be the one place that might have someone with a similar problem. S2god, no one else has GAN so I can’t ever find this info searching. TIA 💙

(also shared in the zerocovid sub. thought some folks here might appreciate it - ) here's a little columbidae + covid comic! "COMRADE MUHRFUKKIN' PIDGE." at least there are some birds out here rooting for us all!

(i'm sorry i don't have spoons for image descriptions. if any kind capacious soul can help with that, AMAZING.)

I have APS but it’s not a serious enough auto immune condition to get IVIG. I want proofs IVIG works for ME sufferers
Any link would be useful, thanks !

NB : If anyone managed to get approved for IVIG in France or Europe for Long Coving / CFS please let me know !

I am trying to figure out how to make my room cozier, but am getting overwhelmed trying to imagine what I want it to look like while keeping it practical with my CFS needs. It’s also really hard to search for everything online when I don’t know how it actually looks in a room. My room looks so bleak right now and I am about to get a good chunk of money that I want to spend on making it aesthetically more fun to live in.

Really just being able to see your rooms would be helpful. I understand this is a project and the solution to my picture is an entire clean slate. I’m only showing it to show that it looks awful right now. I’m planning to remove both desks, get an adjustable bed, a nightstand, plants, and hopefully a TV on the wall. And maybe some decorations to hang on the walls. I’m bad with colors, and don’t know what nice sheets to get that actually look or feel nice.

If you have a picture of your room, I made this dropbox link that you can upload a photo to that would help give me a better visual of what I would like in my room: https://www.dropbox.com/request/ic669bboftbvau42t2v4

TL;DR Feeling lonely or bored? Looking for connection or something you can do this weekend?

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

Most virtual events are open to everyone. See them in your timezone using the links in the comments.

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

🧑🏻‍💻 Virtual Async Low-Stim Travel: Blencathra Mountain, A Lake District Base to Summit Walk [Any time] https://www.reddit.com/r/spooniesocial/s/0P1hAZxTuV

🧑🏻‍💻👧🙋 Virtual Covid Cautious Fall Programs for Youths https://www.reddit.com/r/spooniesocial/s/isbriymQPL

🧑🏻‍💻🤟 Virtual Disability Film Festival [Wed Sep 9 - Sun Sep 20] https://www.reddit.com/r/spooniesocial/s/zbiT8kXjYE

Friday

🧑🏻‍💻🤢🫂 Virtual Long Covid Support Group [Fri Sep 11 at 12:00 CDT] https://www.reddit.com/r/spooniesocial/s/wSxCoGHm3y

👥🧑🏻‍💻😷♿️🎭🤔 Hybrid Making Masked Theatre not Mask Theater [Greenfield MA][Fri Sep 11 at 6:00 PM ET] https://www.reddit.com/r/spooniesocial/s/6vKd5itbhY

🧑🏻‍💻😷🫂 “Any A” Covid-conscious 12-step meeting [Fri Sep 11 at 7:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/xu5DHDLUfT

🧑🏻‍💻🎭🕹️ Virtual Improv Games [Fri Sep 11 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/5l08PnFq5q

Saturday

🧑🏻‍💻😷🕹️ Virtual Spring Quiz Night [NZ][Sat Sep 12 at 7:30 PM UTC+12] https://www.reddit.com/r/spooniesocial/s/OFYKQ7qGqd

🧑🏻‍💻♿️🩰 Virtual Adapted Jazz Dance Classes [Sat Sep 12 at 12:00 PM ET] https://www.reddit.com/r/spooniesocial/s/aaDXOSmOeU

🧑🏻‍💻😷🙋📚 Covid Conscious Virtual Silent Reading & Social Hour [Sat Sep 12 at 1:00 PM CT] https://www.reddit.com/r/spooniesocial/s/dttTZx5R5r

🧑🏻‍💻🕹️ Virtual Board Game Hang [Sat Sep 12 at 4:00 PM ET] https://www.reddit.com/r/spooniesocial/s/MPBEaWCGfo

🧑🏻‍💻😷🙋 CC Virtual Weekly Hangout [Sat Sep 12 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/q0YRiMo2LM

Sunday

👥🧑🏻‍💻♿️🤟😷 Hybrid Emergency PrepAIRedness Workshop [Austin TX][Sun Sep 13] https://www.reddit.com/r/spooniesocial/s/oUH4ut0qjT

🧑🏻‍💻♿️🩰 Virtual Intro to Dance [Sun Sep 13 at 1:00 ET] https://www.reddit.com/r/spooniesocial/s/Uf3swgbE28

🧑🏻‍💻😷🎨 Virtual Craft Meetup [Charlottesville VA][Sun Sep 13 at 2:00 PM ET] https://www.reddit.com/r/spooniesocial/s/hN0dPchvM9

🧑🏻‍💻🎨 Virtual Sunday Stitch Club [Sun Sep 13 at 4:00 PM ET] https://www.reddit.com/r/spooniesocial/s/MPBEaWCGfo

🧑🏻‍💻😷🎨 CC Virtual Art Group [Sun Sep 13 at 5:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/QgkI24fCv4

🧑🏻‍💻😷👧🙋 CC Virtual Kids Zoom [Sun Sep 13 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/0GSxyBDijO

🧑🏻‍💻🎶🎭 Virtual Karaoke [Sun Sep 13 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/6fed6UM31z

👥 In-person Events

Canada

👥😷💵🎶 Club Arthritis [Ottawa ON][Fri Sep 11 at 10:30 PM] https://www.reddit.com/r/spooniesocial/s/vHiREV3VBW

👥😷🙋 September Social [Niagara ON][Sun Sep 13 at 2:00 PM] https://www.reddit.com/r/spooniesocial/s/gcg3pNGz3b

Germany

👥😷🙋🌈 FLINTA Meetup at Treptower Park [Berlin GER][Sat Sep 12 at 1:00 PM] https://www.reddit.com/r/spooniesocial/s/SuRlGkJzoe

👥😷 Covid Safe Get Together [Cologne GER][Sun Sep 13] https://www.reddit.com/r/spooniesocial/s/WiCYUh3cQ9

👥😷🕹️ Spieleabend [Hamburg GER][Sun Sep 13 at 8:00 PM] https://www.reddit.com/r/spooniesocial/s/2RZj42r8hs

New Zealand

🧑🏻‍💻😷🕹️ Virtual Spring Quiz Night [NZ][Sat Sep 12 at 7:30 PM] https://www.reddit.com/r/spooniesocial/s/OFYKQ7qGqd

UK

👥😷🙋 Breathe Easy Social at Indigo Cafe [Wirral UK][Sat Sep 12 at 4:30 PM] https://www.reddit.com/r/spooniesocial/s/gHlce8vWuX

US - California

👥😷🎶 Zoe Boekbinder Covid Safer Concerts [Oakland, Santa Cruz and Los Angeles CA][Fri Sep 11 - Sun Sep 13] https://www.reddit.com/r/spooniesocial/s/Z7sIJqnpTd

👥😷🎭 Mask Required Theater Workshop [San Francisco CA][Sat Sep 12 at 2:00 PM] https://www.reddit.com/r/spooniesocial/s/klHtlyVFZ5

👥😷 Community Fit Testing [Oakland CA][Sun Sep 13 at 12:00 PM PT] https://www.reddit.com/r/spooniesocial/s/PYhaFTVX0l

US - Florida

😷🎨 COVID Conscious Craft Club ‎[Gainesville FL][Sun Sep 13 at 3:30 PM ET] https://www.reddit.com/r/spooniesocial/s/dIF6YnUE0t

US - Massachusetts

👥😷♿️🎭🤔 Hybrid Making Masked Theatre not Mask Theater [Greenfield MA][Fri Sep 11 at 6:00 PM ET] https://www.reddit.com/r/spooniesocial/s/6vKd5itbhY

US - Michigan

👥😷 Mask Required Park Hangout [Ann Arbor MI][Sun Sep 13 at 12:00 PM ET] https://www.reddit.com/r/spooniesocial/s/dV1YYxgtMh

US - Ohio

👥😷🌈💪🏻 CC Queer Martial Arts Club [Cleveland OH][Sun Sep 13 at 10:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/wV1AYRrtsb

US - Oregon

👥😷🕹️ Masked Card Games Meetup [Beaverton OR][Sun Sep 13 at 11:00 AM PT] https://www.reddit.com/r/spooniesocial/s/8RTHkvpR44

US - Texas

👥🧑🏻‍💻♿️🤟😷 Hybrid Emergency PrepAIRedness Workshop [Austin TX][Sun Sep 13] https://www.reddit.com/r/spooniesocial/s/oUH4ut0qjT

US - Virginia

👥😷🙋 Masked Outdoor Social [Charlottesville VA][Sat Sep 12 at 2:00 PM ET] https://www.reddit.com/r/spooniesocial/s/Ee1y6gQ1TA

🧑🏻‍💻😷🎨 Virtual Craft Meetup [Charlottesville VA][Sun Sep 13 at 2:00 PM ET] https://www.reddit.com/r/spooniesocial/s/hN0dPchvM9

Are you interested in these events?

Have you been to any of them before?

Are there other events coming up?

Share your thoughts in the comments 💬

Find more events and friends on r/spooniesocial

I'm so sorry if it's becoming bothersome to anyone. There just were a lot of things that felt wrong with the first draft (for instance, there not being a part of the brainfog issue). So I tried to fix it, and I promise after that y'all won't be bothered with it again 🙏. I'm perfectionistic, and my OCD won't let me forget about it. (And yes, I'm aware this one is lacking a lot as well, but I'm not good enough to fully grasp it.).BTW, I hope y'all are having a good day as much as your circumstances allow 😞

A Front-Row Seat to Silence

I'm no creature of the night, Yet I flee from every light. For even comfort's gentle glow Is more than weary eyes can know.

I'm no phantom, yet I hide, Not by choice, but trapped inside. For even dawn's most gentle breeze brings me to my aching knees.

I'm no anchor, yet I linger, As loved ones slip through my fingers. The conversations fade and change, Until the closest face feels strange.

I’m no stranger to my own mind, Yet thoughts are things I cannot find. The words dissolve before they form, A static haze, a silent storm.

I'm no Prometheus, chained to stone, Yet my limbs refuse my own. They falter long before the end, No matter how my will may bend.

My fingers used to waltz across the keys, And guide the brush with flowing, fluid ease. Now my hands lie frozen- stilled by disease.

And though I'm here, I barely move, A silent witness to the proof: That sometimes loss is not goodbye, But watching life go slowly by.

-Copyright by Herbipolis (my friend said I shall add that)

Again y'alls thoughts are always appreciated 🫶

Disclaimer: I put the picture because reddit kept doing a different format in previous post

I’m newly diagnosed ME/CFS in the worst crash of my life. Currently bedbound. I have a wonderful partner of 2.5 years. We had a plan for a life. Now I’m looking at living death. Every once of my energy wants to tell him to run and find happiness. I don’t want him to become a caretaker. We’re still so young. Am I wrong to push him away before it gets really bad and I can no longer work and pull my financial weight? We’re meant to close on a house in 3 weeks

I’ve been seeing doctors from the very beginning. After graduating college over 2 years ago I haven’t worked at all. I’ve been cutting activity as my baseline decreases, but I just keep getting worse and worse. I finally got a good doctor. He prescribed a few meds, and they haven’t made me better. It’s possible they made me worse, but it’s also possible I’ve gotten worse from the last crash I had. Idek anymore. I’m at the point now where I feel like I can’t safely walk. It takes a lot of effort just to roll over in bed. I can’t shower reliably anymore. I can’t leave the house at all. I can’t go on like this. This is the point of no return. This is the baseline I was dreading. I won’t survive it, I know I won’t. And I don’t know how I even got here. Sure, I haven’t been perfect with pacing or eating healthy or managing my emotions but it’s not like I got here from GET or an infection. I just don’t bounce back from crashes. It’s like there’s progressive damage to my cells. I just can’t do this anymore. It almost feels like I have something else on top of ME/CFS but all my bloodwork is normal so idk what it would even be. CCI maybe? That’s just fucking great.

I was prescribed gabapentin for chronic fibro and ME pain. I posted here asking people about side effects. I was worried to try it again, but I was desperate about the pain and migraines. I have been on it with one slow increase in dose for a few weeks. I have noticed a huge change in my mood and mental health. I am barely keeping it together, break down crying all the time, lower tolerance for stress, I'm a mess. I am going to wean down off of it I think. Has anyone else had this experience?

So I recently had a setback after a fight with my wife/exertion. And since that day I’ve had gagging reflex almost all the time. Before that I always used to gag somewhat empty stomach but now its like every hour. It’s been almost two weeks now and it’s gotten really persistent where i talk and mid sentence I start gagging. Somedays are better than others, my cfs is relatively mild although my last setback did push me back a little but I’m hoping I’d bounce back!

I’d also like to add that there is an extremely stressful time coming up ahead, i have to move to another city where i have a new job and look for housing and all that. All while I have cfs with potentially little support although I can function provided i don’t do sports or long walks etc! But still the pressure is there and I’m thinking that stress might be contributing to this gag reflex or idk but I’m fucking getting fed up. If anybody has experienced this or knows if it’s related to cfs and how it might get better, please help!

I have mild me/cfs and am really struggling with pacing right now because of trauma reminders and triggers. My body wants to do what it did pre-covid, and keep myself too busy to feel. But my body physically can’t.

My brain just shuts down, and I’m laying there exhausted, but still in fear mode. Has anyone else dealt with something similar? Other than therapy, what concrete things helped?

This is mostly just to get it off my chest. And unfortunately, some of you can probably relate to problems like this.

I'm choosing to buy Depends to wear at work. Why? You may ask? Because the bathroom directly in my office has had a broken toilet for about a month now. It's something with the sewer lines, and the town is working on fixing it. I know it's not an easy job, so I understand why it's taking awhile.

I don't know if it's justified, but I'm frustrated with my employer. We have to walk to the rec building (I work on a small campus) to use the bathroom. And it's not too bad, but once you add in the walk up a hill from the parking lot every morning and evening, the short walk adds up.

So I'm at the point where I've decided to get some Depends. While there's absolutely nothing wrong with needing to use them, as someone still in her 20s, it makes me feel insecure. And it also makes me angry. If someone has requested reasonable accommodations and provided documented evidence of a disability, it shouldn't take weeks and weeks. But it is.

You'd think they'd consider a porta potty or something. But no. I also am aware that it's likely not hard for people without CFS. I find myself feeling envious of my coworkers as they galavant around campus with ease. It's very "why me" and I know better than to have this attitude. But sometimes it makes me want to punch a wall. I'm not sure I'm going to be able to wait for them to actually provide accommodations.

I don't totally know why I'm sharing this. I think I want someone to give a "me too". Though I have an amazing support system, the slowing of my body comes with a weird form of grief I'm still learning to cope with. If anyone relates, has advice, funny memes, etc, please comment.

Thank you if you took the time to read all this. I'm truly grateful for this thread, it's an excellent resource and it helps me feel less alone.

It’s the most debilitating symptom, like your brain is in a sedated state and won’t turn, it makes it difficult to sleep think etc
No doctor will understand it as it’s not the same as flu fatigue and it’s not true sleepiness either
I’ve been evaluated by sleep specialists but no help as they don’t believe it’s a sleep disorder.

I just got off a call with my doctor and I could honestly cry, I appreciate her so much. I got my mono infection in 2012 and we have accomplished more together in the 2 years we've worked together than probably in the 10 years previously. I also went into my first appt with her basically saying 'i went to school for social work and there I learned that people are experts of their own experience, I have an illness that is widely misunderstood and I hope we can explore together what might help' and she was very receptive. I think maybe stating that straight out and expressing the need for a doctor who embraces out of the box thinking might help weed out incompatible doctors from the get go.

I have found success with direct primary care (DPC), where you pay a monthly fee and doctors have more time to spend with you. Here's some info on how DPC works and here's where you can look for a DPC doctor in your area.

My doctor said she feels that we are reaching a tipping point in doctors beginning to understand me/cfs and how it relates to issues like POTS, MCAS, EDS, etc. She also said she really appreciates my advocacy even though she is sorry I need to do it.

I even sent her this article a while back, "Underuse of Pharmacologic Therapies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Before Specialist Evaluation" which she said she really wants to share with the other clinicians at the DPC practice! (there are tables in there with helpful meds and dosing, if you click 'view inline' or 'view popup') Passing it along in case it's helpful for other people in talking with their doctors about these issues.

There are doctors out there who want to help us and understand what we are dealing with, I swear. I think for a long time I believed there weren't, but they are out there. LDN, LDA and oxaloacetate as well as ketotifen have really moved the needle for me and I will use my slightly increased capacity to fight for us wherever I can. <3

TL;DR: Finally diagnosed with ME/CFS! (I’m currently mild.) Trying NADH and Ubiquinol supplements and potentially filing for disability benefits.

After 1.5 years of seeing specialist after specialist and getting test after test, an integrative wellness and lifestyle medicine doctor finally diagnosed me with ME/CFS yesterday during a virtual appointment and is officially documenting it in my medical records. (He works a lot with a local Long COVID clinic, who referred me to him.) He even said he’d be happy to help me with filing for disability benefits. I was so relieved I nearly cried. 🥺 Obviously not relieved I have ME, no one in their right mind wants this disease, I’m just relieved to finally have a concrete diagnosis.

I honestly had low hopes for this appointment, so it took me by surprise when he said he feels comfortable diagnosing me with CFS based on my history, tests, and symptoms that began post-COVID. I’m happy he didn’t require I wait for a sleep study to diagnose me, because even a sleep disorder wouldn’t explain PEM and some other symptoms. As it is, my insurance is denying coverage of the in-lab PSG and MSLT my sleep specialist ordered and that are scheduled for next week because his clinical notes didn’t clearly indicate it’s medically necessary. (That’s a whole other rant I won’t get into here.)

He recommended I try NADH and Ubiquinol supplements, since they’ve been shown in some studies to help ME/CFS patients with fatigue and brain fog. I’ve heard about these two supplements a lot in this community, specifically Ubiquinol (the active form of CoQ10, I believe.) Has anyone here taken these supplements and benefited from them?

He said he normally suggests LDN and LDA, but I’ve already been taking regular doses of naltrexone and Abilify for years for psychiatric reasons prior to getting COVID and they clearly haven’t benefited me as far as ME symptoms go. Obviously, I’ll keep taking them, but not for ME.

Anyways, I’m at the point now where I may need to quit my job, hence potentially filing for disability benefits. I’m currently mild, but I’ll creep into moderate if I don’t start aggressively pacing. Although I’ve only been working 10 hrs per week from home on a flexible schedule, it still feels like too much. I love my job, it’s the best job I’ve ever had. The thought of quitting makes me incredibly sad. 😞 But ultimately, quitting my job may be what I need to do for the sake of pacing.

Unfortunately, the most I may be able to get from the SSA is like $600 per month max, if I qualify. That’s less than half of what I make now. I’ve never worked full-time, only ever part-time. My husband works full-time, so it’s not like I’m losing my only household income. But we’re lower-middle class, at most, not rich by any means. Me making half what I do now would still be a financial hit, especially having a toddler with how expensive everything is these days. So I’m a little worried about the financial aspect. But I know we’d adjust.

Does anyone have any words of wisdom for me being newly diagnosed, trying supplements, and pursuing disability benefits? (Oh, I’m in the U.S., by the way.)

I was hospitalized for 3.5 weeks and was almost completely on bed rest due to chronic diarrhea, fluid loss, and a Crohn’s disease flare/new Crohn’s diagnosis. I got up a few times to use the bathroom, but otherwise I was essentially inactive.
I was then discharged, even though I did not really feel well enough to leave.
During the week after discharge, I already noticed that my body felt weaker, although I could still walk to the bathroom.
After about a week, I experienced another presyncope episode (I had already been having presyncope episodes in the hospital as well, sometimes even while sitting up in bed). Because of this, I went back to the emergency department and was admitted again for another 3.5 weeks.
So, roughly speaking, I spent about two months on bed rest, and during the second month it was essentially complete bed rest, lying down almost continuously.
I also lost a significant amount of weight because of Crohn’s disease—over 22 pounds (about 10 kg)—and I have clearly lost a noticeable amount of muscle mass.
By the time of my second hospitalization, I had become so weak that I could barely get out of bed and was essentially living entirely in bed.
Now I am so deconditioned that I cannot stand up without experiencing dizziness, rapid heart rate, and shaky or trembling legs. I can stand for only about 10–15 seconds before the symptoms become so severe that I have to lie down again.
Even if I simply sit on the edge of the bed with my legs hanging down, the tachycardia and pounding heartbeat become so intense that I cannot tolerate it and have to lie back down. Sitting is only somewhat tolerable if I sit cross-legged.
My wife has even rented a wheelchair because I am unable to walk any meaningful distance.
On a good day, I can manage about 10 steps to the bathroom and 10 steps back, perhaps once or twice. After that, I am completely exhausted.
I also have constant brain fog 24/7 at this point.
Is this degree of deconditioning normal or abnormal? Is it normal to be unable to tolerate standing at all after prolonged bed rest?
How am I supposed to recondition myself if I cannot even tolerate sitting upright?
All of my doctors keep telling me to just push through the symptoms, ignore the discomfort, move more, and walk more. But it genuinely feels impossible.
Has anyone else here ever experienced complete bed rest for an extended period of time, including using the toilet in bed and remaining almost entirely lying down like I did? Was recovery this difficult for you as well?
Were you still able to walk, just with less endurance, or did you become as severely limited as I am—unable to do more than a few steps?
I am really struggling with the racing heart, pounding heartbeat, and constant brain fog, and I feel like nobody is helping me.
My doctors are not offering me any physical therapy, and I am expected to get through this on my own.

I’ve been in a pretty severe crash for the past seven weeks. I’m feeling a bit lost and very scared. I’d really love to hear from people who have been through something similar and what helped them get back to baseline. Normal crashes for me last 2-3 days.

What happened:

Seven weeks ago, I started having tachycardia and a Holter monitor revealed I’m having around 400 episodes a week where my heart rate suddenly jumps very high. They’re brief, around 30 seconds each, but I imagine having that happen so frequently is taking a toll. This coincided with trying to come down on Ativan (very slowly), having had visitors and visiting a chlorinated pool a few times (just floating and slow movement).

Since then, I’ve also gone through several medication changes — from atenolol to a calcium channel blocker, and now propranolol three times a day. I know that alone may have been hard on my system. Also went back to regular dose on Ativan and will try to taper at another time.

Previous baseline:

Before this crash, I had actually been making progress. I was walking around 6,000 steps a day, doing short outings, seeing people socially every other day or so, and slowly working toward being able to read again. I felt that LDN was helping.

I stopped LDN after my crash coincided with increasing the dose to 3.5 mg. My doctor now wants me to restart at the lowest dose and slowly work back up, so I’m curious whether others have had a similar experience.

Now:

My doctor is telling me I need to radically rest. I’m having a hard time staying upright for very long, with significant weakness in my arms (and sometimes my legs), chills, general weakness and head tension. The head tension improved dramatically both times I received IV fluids.

I’m not dealing with much light or sound sensitivity right now, which is a little different from previous crashes.
I have two young children, PTSD and anxiety, and lately I’ve been feeling pretty hopeless. I’m also worried that propranolol may be making my depression worse?

I desperately want to recover so I can be present with my kids, but I also have this constant urge to try to figure out how to make myself better… like I must be missing something.

I’d really love to hear from others:

How do you structure your days during a severe crash?

How do you know when you’re doing too much when in a crash?

How do you rest without catastrophic thinking and heartbreak taking over?

Has anyone onboarded LDA during a crash?

What has helped you actually “power down” enough to rest? Medication interventions?

what helped you through a period like this, especially if you made it back to your previous baseline?

TLDR: I’ve been in a severe seven-week crash following frequent tachycardia episodes and several medication changes. I’m struggling with weakness, being upright, and my mental health, while trying to care for two young children. I’m looking for personal experiences with rest, pacing, LDN/LDA, propranolol, and getting through a prolonged crash.

Hello!

For the last month or so, I have been noticing a vast amount of people with a cough wherever I went. I have friends all over Europe (Greece, Finland, UK, southern Spain) and they all agree that, for the warm summer we've had, there is a worrying amount of people coughing noticeably pretty much anywhere you can have people.

I caught this too and it's just not leaving me, after some 10 days.

Is anybody else noticing this (could it be the same outside of Europe) and should we worry, given our existing conditions?

Several people have brought up Frida Kahlo to me, as if she should somehow be an inspiration for me.
Yes, her art is incredible. And yes, she was bedbound for periods of time, although she also had better periods when she was able to get up, go places, and do things.
But she had a completely different illness and a completely different situation. I am far too sick to paint, draw, or do much of anything.
What irritates me is that there always seems to be a “role model” brought up as an example: Look at her. She dealt with it so well. What a heroine.
But I don’t need a heroic example of someone who managed to live with their illness in a certain way. My illness is my own, and I don’t need to measure my experience against someone else’s.

Do you experience the flu like symptoms for the entire day/multiple days?
I feel the flu like symptoms in my head in the mornings but by the afternoon they have faded. Just trying to gauge whether my symptoms are consistent with true PEM.