r/mecfs

Trying to get diagnosed and I’m unsure if I have ME

Minutes to hours after I exert, whether it be walking, curling a dumbbell laying down, or just using muscles for anything remotely strenuous, I’ll have a hyperventilation fit where it feels like I’m suffocating. They can last hours

Does anyone else experience this? It’s much more extreme than just normal out of breath immediately after exercise

Sorry, I don't really have anyone to talk to about this and I just need to get it off my chest.

Recently I almost got an apartment lease. It was a wonderful place and it would have been so perfect. It was in my local area and it was wheelchair accessible (which is very rare in the rural town where I live and grew up). It had this secluded little patio section facing a small lawn and beyond that, a beautiful pine forest.

I was second in line for the lease. My dad went to the showing and took pictures for me. I had already (stupidly) started moving in in my head. I had imagined being able to walk a few steps outside and stand barefoot in the grass. To be able to watch the trees from my bedroom. It would be a small but significant freedom.

My current apartment is on the third floor with stairs and no elevator, so I can't go outside without help and even then it's very hard. I haven't been outside in almost a year.

I used to be an outdoorsy person and I loved hiking, taking long forest walks and swimming in lakes. Now I watch the far away forest beyond the railroad outside my window and listen to the blackbird early in the morning when I can't sleep.

Then I got the email. I didn't get the lease. The one person before me in line had taken it. At first I just showed everything down and tried not to think about it, but now, a week later, I'm crying. It was like I almost had a small fragment of freedom and then lost it. The cruel thing is that I never had it, it was just a dream and wishful thinking. But it still feels like a big loss somehow.

This is maybe silly but I just can't help it. I thought I had accepted everything ME has thrown at me. Stolen from me. All the lost hobbies, friends, opportunities, freedom. I grieved them extensively and eventually landed in a kind of peaceful but dull acceptance. But this just hit me like a truck and I feel like it's reopening all of that grief all over again.

I'll be turning 30 in about a year and I've been sick for about 5. I can't help but feel like life is just slipping by and I'm just sitting here, completely stagnant. Not that this apartment would have changed much, but it would have changed a little bit. It would have given me the ability to partake in the nature I love, even if just a little bit.

Thank you for reading, I wish you all well

I've had M.E for 30 years. I went through years of bed bound to some sort of remission years ago. The past 5 years have been well managed, though knowing I still had M.E my energy envelope was bigger than it ever was, I saw warning signs, acted appropriately and even if I did crash, it was short lived and manageable. I thought I was somewhat in some sort of recovery and over the last 2 weeks I've pushed and pushed with physical exertion, squatting and pulling tons of weeds, renovating my gardens, thinking I'll be fine because I'm not like I was years ago. 3 days ago I started to feel extremely weak, shaken, my legs were wobbly and my boyfriends voice was starting to make my body tremble. I knew I needed to rest ASAP. He surprised me Thursday with a shed, I desperately needed to tell him that I need to rest (despite being together 4 years and me telling him about my illness in vague terms, he's never seen me very ill) I allowed him to come put the shed together, he kept asking me to go in and out of the house to get tools, after 30 minutes, I could feel my legs giving up on me but I pushed through. He then came yesterday due to a problem with my fence, when I was almost on my knees with fatigue. I actually lost the ability to speak and my legs were giving way. I had to send him a video about M.E last night.

I'm scared right now. I haven't been in a crash for years and I'm worried that this is the beginning of the end again. I adapted my life and brain years ago to acceptance. But having lived a somewhat less fatigued life over the past few years, I'm struggling to cope. I can't have the TV on, I can't verbally talk to anyone. I can't watch social media videos and all of my little hobbies that I need and want to do are now impossible. I'm scared that I've done ongoing damage and this is going to be permanent again. I forgot how bad this is, how boring, lonely and frustrating. Counting every of the hour of the day to disappear like I used to.

I know you're all suffering and believe me, I had a good 10 years of being confined to bed and dark rooms. I never expected remission, but to some degree I was in it. I'm angry at myself for not forcing complete rest when alarm bells started ringing a few days ago! I'm annoyed that I didn't speak up to my boyfriend that I absolutely couldn't see him the other day.

Sorry for the rant. I forgot how bad this is, but also take comfort in knowing that I went into a type of remission to a certain extent. You can be sick for years and think it's forever but suddenly you get a little better gradually for no known reason. I'm praying I haven't permanently pushed my body out of remission.

Hi everyone. I have neuro-Sjögren’s, and I was wondering if anyone else with neuro-Sjögren’s experiences something similar.
Besides my dysautonomia symptoms, I have episodes where I feel extremely unwell, and the fatigue is completely out of proportion to the amount of activity I do. For example, if I simply get up to pour myself a glass of water or walk a few steps around the house, I feel like all my energy suddenly disappears. My muscles start to ache, and it feels as if I've done intense physical exercise, even though I've barely done anything.
This isn't just the dizziness or rapid heart rate that I associate with POTS. It's a completely different feeling, a whole-body collapse. I feel like I have to lie down immediately, not because I think I'm going to faint, but because it feels like my body simply can't keep functioning. It's as if every cell in my body has run out of energy.
During these episodes, I also have a terrible overall feeling that is very difficult to describe. The closest way I can explain it is that I feel as if I've been poisoned or intoxicated. I feel profoundly weak, nauseated, my muscles ache, and my entire body feels extremely unwell. Sometimes these episodes even happen while I'm already lying down and doing absolutely nothing.
These episodes can last for several days, not just a few hours, before I gradually start to feel better again.
Has anyone else with neuro-Sjögren’s experienced this? Is this considered part of the disease, or did you eventually find another explanation?

I’ve had this illness sense I was 14-15 and i used to be such an independent person, I did my own laundry, cooked my own meals, got myself where I needed to be (bus, bike, whatever I made it work). Now I’m almost 20 and I can’t cook, can’t do my own laundry, I can still shower independently but like come on that the bare minimum for survival. I live entirely off of my dad and while I’m grateful I know it can’t continue like this forever. Eventually he will stop supporting me and then I’m fucked. I quite literally will die. I wanna be able to go to stores and buy what I want, I want to be able to order things online without asking him, I want to be my own person. I’m applying for disability but my primary doesn’t believe in ME/CFS and my specialists refuse to fill out the paperwork because “it’s my PCP job”. I just don’t know what to do anymore. Before I got sick I already thought my life was miserable but now it’s soo much worse. At least then I had the ability to do things

​

​I have a physical chronic illness, and I spend my life being sick, unable to do anything. It is a situation that I am suffering through completely every single day. I miss out on everything, I can't participate in anything, and I am already at my wit's end, deeply sad to be left behind alone at home and missing all these moments.

​But what drives me crazy and makes me so angry is that right now, in the evening, I am still getting these endless remarks from my family like:

​"You could have come..."

​"You could have done this, why don't you want to?"

​"Oh, you don't want to go on vacation with us?"

​"Why don't you want to come to this family meal or go to the restaurant?"

​Do you not understand that I cannot move? Stop pretending my illness is a choice, a refusal, or a whim. If my body allowed it, I would go out and join you in a heartbeat!

​The reality is so brutal: I have absolutely no one. I have nobody except my parents, whom I try to interact with as little as possible because they are the most toxic people around. But if I stop talking to them, who am I going to talk to? I am forced to live with this chronic illness where I can't do anything, and on top of that, I have to deal with these constant remarks.

​For the past four years, I have been trapped inside the house 24/7, facing every single morning in this same room. But to them, they think it's a choice just because some incompetent doctors haven't handed over the right medical diagnosis yet. They act like without an official paper, I am making it all up. Why can't they just open their ears and listen to me?

​They are deeply stupid and bad human beings. It completely drives me to despair—how am I supposed to be okay? To have so little empathy is toxic and unhealthy. I am trying with all my strength to focus on my well-being, on my mental health, on staying calm, and on not making my fatigue worse. But this total lack of support and constant guilt-tripping is pushing me over the edge and making me lose my mind. I just need people to respect my physical limits instead of blaming me for them.

Hey folks, I’m not super familiar with reddit so I wasn’t able to search this subreddit to see if this has been asked before, though I’m sure it has.

My specialist suggested I ask communities on Reddit and Facebook for input from other folks with MECFS. I’m currently working retail, trying to save up enough money to go back to school in September to finish my Master’s. The past few years, I’ve usually worked research jobs, which pay well and allow me to work remotely, but I haven’t been able to find a research job in the past almost-year. Currently I’m working at a Home Depot, doing an extremely physical job (I’m not a sales associate) surrounded by overstimulation (sound, people asking questions, radio calls going through my bone conduction headset, overhead fluorescent lights, etc.). The job starts at 6AM and I get out at 2:30. I’ve got accommodations for “short breaks as needed”, but the way the store’s decided that works is that the mini-breaks (which are actually for PTSD flashbacks, which are NOT breaks for my body or my mind) are subtracted from one of my two 15-minute breaks. Needless to say, I don’t take my “mini-breaks”. The job is really taking a toll on my body, even with another accommodation that says I need 1 day off after/before every day I work. I spend those days off just recovering in PEM, which means my house is turning into a disaster and my pets don’t get taken care of unless my partner does it, etc. Long story long, I need a new job but have no idea for what would be better.

I also have autism and ADHD, so I will *absolutely* get fired from any kind of admin/reception role because I don’t (personally - I know some AuADHDers do!) have the right skills.

In case it matters, my undergrad is in Political Science and History, and most of my work history has been in public administration and governance research.

What’s the best job *you’ve* ever had? What should I look for in a job? If I get an interview, is there anything I should ask specific to my MECFS?

TL;DR – Long post.

I need to get this off my chest because I don’t know how much more of this I can take.

Three years ago, after COVID, I developed what I now know was Long COVID. Back then, nobody in my country knew much about it. No doctor warned me about pacing or post-exertional malaise. I was never told that pushing through could make me permanently worse.

Looking back, I think I was still mild. I had exercise intolerance and I felt that something was very wrong, but I was in complete denial. I kept trying to live my life. I took beta blockers and sleeping pills just to get through the days, convincing myself that if I rested a little or waited long enough, I’d recover.
Instead, I kept pushing and crashing.

Crash after crash after crash.
I didn’t understand what was happening to my body. I had no idea that every crash could be making me sicker.

Today, I am severe.
Almost every tiny movement can trigger a crash. I wake up with a racing heart and pounding palpitations. Even normal movement makes my heart feel like it’s trying to beat out of my chest. It feels like all the strength is being drained out of my body.

I’ve been in what feels like one continuous crash for nine months, and I can’t find my way out. I spend almost all my time lying in a dark room, but even that doesn’t feel restorative anymore. My body is exhausted, yet my brain won’t switch off. I can’t get refreshing sleep, and I feel trapped in this horizontal life.

The hardest part is that I even have to pace socializing. I miss my friends so much, but if they come over, I often crash afterwards. The adrenaline keeps me awake, so instead of feeling happy after seeing them, I end up paying for it physically.

The pounding heart has always been one of my crash symptoms, but now it feels different—stronger somehow. I don’t understand why I never seem to improve anymore or what keeps triggering these crashes. It’s terrifying because I can be lying completely still and still feel my heart pounding. Meanwhile, I know people whose resting heart rate is much higher than mine, yet they don’t feel anything like this.

The hardest part is looking back and wondering what would have happened if someone had simply told me about pacing three years ago. Maybe I would never have become severe. Maybe I’d already be living my life again.
Instead, I learned about pacing when it already felt too late.

Now I keep asking myself: how do people recover from this stage? If it takes years just to become stable, and there are no guarantees, how do you keep fighting? Even staying in bed doesn’t always make me feel stable anymore.

Anyone around me is shocked, and me also that i was unresponsible for my health. And there are no treatments. I miss my friends. Im used to suffering already but i want to be symptom free at least for a little bit. This is not healthy and sustainable anymore and sometimes i feel that i don t really care anymore what happens. My BF wedding is coming, im in crash, i know i could go for 1h but pay for it after.
I never feares my symptoms, my insomnia, my high HR, palpitations, that was the problem, i pushed tru it all the time.

The PTSD from countless crashes is becoming just as hard as the physical illness. Every symptom makes me fear another crash. It feels like my

life revolves around avoiding the next one.
Has anyone else gone from mild to severe because they didn’t know about pacing?

Has anyone spent months in what felt like one continuous crash and eventually improved? Is there still hope at this stage? I genuinely want to hear from people who have been through something similar.

hi everyone, i've (33F) been following this reddit page for a year and a half, since i got really sick with potential mecfs / long covid / post viral fatigue / floxing (probably a combo of all). but i didn't have the capacity to post. I'm going to make a TLDR at the bottom of the post, but to summarize in the beginning so you can see if it's worth your spoons to read, i'm going to be sharing the medications and other things that helped me over the last year and a half of dealing with this disease. it seems i am finally recovering so now it's time to process this horrific experience.

a summary of the last year and a half: i spent 3 months in very severe category bed or house-bound, 6 months sometimes able to leave the house but in a crash cycle ( i think i still qualified as severe or moderate in this phase). 3 months feeling like shit but somewhat functional. in the worst moments I was in the FUNCAP 1-1.5 range and nowadays I am feeling like a Funcap 5 or so.

and just in the last 3 months or so do I feel like i'm starting to come out of the tunnel and the worst of the illness is starting to feel in the past tense.

for the longest time, i felt there was no hope because my body was not recovering and I was still at the mercy of the crashes and PEM. when i was having some good days, I was still waiting for the other shoe to drop. And I know that MECFS has no cure and I was fitting the diagnosis criteria because of the PEM. However, at the beginning of this year, I got motivated to just try more things and see if anything at all could help me. even incremental improvement is something to celebrate because this disease takes away so many dimensions of life.

months 0-3: a very what the fuck is happening time, week after week still expecting to recover and not understanding what was happening. crushing fatigue from just walking to the bathroom, unable to turn over in bed, couldn't handle being outside of my room. couldn't process tv/media, constant panic attacks and overwhelm. crashing from daily living tasks, complete exercise intolerance, could barely feed myself, it was so hard to breathe, heart constantly racing.. you guys get it ok, fucking dire. feeling the worst ever while trying to get insurance, manage to do some work which would give me PEM. ok i won't linger too long here.

For the first 7 months or so I think I was too lost and foggy mentally to make much strategic plans but i did implement

-pacing, avoiding crashes. but i felt quite lost because it wasn't always predictable what would make me crash.

- gluten free diet (i noticed immediately my body felt less inflamed. i think i developed an intolerance later in life)

- acupuncture- i think this helped me get out of the initial phase of not being able to leave my bed but after a few months i stopped noticing improvement

- iron supplementation. my ferritin levels were in the single digits and they've slowly been improving but it's taken the better part of the year to get them higher.

- supplements like magnesium, vitamin e , vitamin c (these were prescribed by my doctor to help with underlying inflammation from endometriosis)

month 6 I started to do IFS + somatic therapy with an experienced practitioner which I do think has helped slowly over time.

around month 8 of getting sick, i was prescribed LDN. starting dose 1.5 mg, moved to 3 a few weeks after that.
- instantly (as in a few hours later) noticed myself getting out of a crash/ neuro-inflammation spiral

- every time i increased the dose i noticed my heart was wonkier and my pots would flare up

- noticed myself feeling noticeably happier
-over time I was having increased capacity (daily steps started to increase steadily, before this anything over 4000 steps was an instant crash)

- flares where i became bedbound again started to get shorter (became 1 week instead of 3 weeks)

In the winter, around months 10-12 I felt that there was a plateau happening and i wasn't getting better. the damp cold was making my asthma worse and my apartment was having a leak. i was able to cook a bit but not stand very long. still getting flares from housework. I was pretty much unable to work and not even sure how i was going to make ends meet. still coudn't exercise and was crashing a lot. my parents were fully financially supporting me for 2 months. stopping the panic of survival helped me massively. i wish i had asked for help / knew what to ask for sooner.

around month 13 is where I went to my doctor and said please lets try as many pharmaceuticals as possible. He gave me a list to work through slowly. I also decided to be quite aggressive about pacing and energy boundaries. I was also chugging salt water and fruit juice, but it was hard to keep up with the amount i needed.

we tried: antihistamines daily morning and night (ebastine and cetitofen)
i started to notice that it was helping my debilitating POTS symptoms , particularly the racing heart in the morning and i had less burning muscle feelings when i would wake up and try to get dressed.

i started to implement nervous system regulation when i would have flares which helped because my panic about my symptoms and constant monitoring for when they were arising would make me feel way worse.

month 14 got on fludrocortisone to raise my blood volume/ increase blood pressure and treat the POTS. one of the only clinical signs that was appearing was low blood pressure and racing heart so my doctor decided to try it. now here's when i got my wings. Within a few days of taking it, I was suddenly able to stand for like 2-3 hours. It was the best feeling ever. I take it daily still and take between .05 mg and .75 mg (half or 3/4 of a .1mg pill). that way I didnt need to drink as much salt and sugar.

month 16 I got the final and best medication: ivabradine, 2.5mg the rockstar that has finally calmed my racing heart that has plagued me for most of my life and incapacitated me during all this long covid business. it has changed my life. my heart stays steady. i'm not as constantly anxious.

month 17/ today: i take my meds every day and for the most part i feel pretty 'normal' just that i go a bit slower than others and need to rest a bit more after big days. but i don't have to be so careful all the time, i feel like i can "push it" a bit and experiment with my capacity. i can walk uphill and carry my groceries. i go out dancing and can live to tell the tale the next day. all of this seemed fundamentally impossible a year ago. sometimes i have a crash-y day but it only lasts for one day. around this time i'm feeling like i can socialize and meet people. i had started dating in the winter but i think it was too soon and put stress on me.

my hopes for the future are to start to strength train without flaring myself to help with bone density loss. i'm also finally working part time and i'm hoping to stabilize financially because i've been in a very precarious situation the last year. yeah, basically, i finally can think a few months ahead. i never thought i would get that back. i also hope to start to share about this experience because it has been life altering and yet i had no words to express it for so long.

tldr: LDN helped me, daily antihistamines helped me, POTS medications to lower heart rate and raise blood pressure helped me most of all. probably time too and trauma therapy. all went from very severe to mild.

PS my initial illness onset was a flox sandwich (where the bread is a bad virus, and a floxing in the middle). i was toast after that.

i already had a POTS and endometriosis diagnosis and was having very very mild long covid symptoms for a year prior to all this mess.

i'm open to questions! thanks for reading!

Tldr

​Living with severe brain fog means much more than just having a bad memory or being unable to read. For me, it completely destroys my brain's filters. When I get stressed, I lose my ability to think critically, to look ahead, or to evaluate information. I become completely vulnerable, easily manipulated, and influenced by my own panic or by whatever others tell me to do—to the point where it feels like I am changing personalities and losing control over who I am.

​I wanted to share this because people truly do not understand what severe brain fog feels like. In my current state, I cannot read, I have major memory issues, and I cannot think clearly. That is already incredibly hard, but I realized something even more terrible that is very difficult to explain to others.

​Basically, whenever I start getting stressed or exhausted, every single idea that enters my head passes through without any filter. This is exactly what makes me so easily manipulated and influenced. The moment I think about something or hear something, my behavior changes instantly.

​It feels as though I am not even myself anymore. I have no self-awareness or feedback on my own actions, no deep thoughts like I used to have, and absolutely no foresight. I can no longer look ahead or predict the consequences of what I do. To give you a concrete example: before I fully understood my illness, I blindly followed catastrophic political or ideological trends simply because I had zero critical thinking left. There was no filter or sorting on my part. It was just a loop of hearing and applying, hearing and applying, with absolutely no distance, as if I were completely disconnected from my own intelligence.

​Right now, I am in a relaxed phase, so I can see things very differently. My thoughts are calm and settled. But the moment I switch into a stressful phase—where my mind starts racing and repeating on a loop "I have to do this, I have to do that"—I perceive everything differently. Because of the brain fog, I completely stop reflecting. I just react immediately to that stress or to whatever people tell me to do. It feels like I am changing personalities, and it is so strange.

​I don’t know if anyone will truly understand this, and I find it so hard to explain. But it is a very real daily battle: this fog destroys my internal filters, takes away my ability to plan or think for myself, and leaves me completely at the mercy of the next panic thought or outside influence.

My girlfriends 32th birthday is in about 4 weeks. She has ME/CFS from Long Covid since 2022. Her Bell-Score is 10, so most of the time she is mostly confined to bed or our couch (otherwise she is risking a crash).

In the last years I gifted her vouchers for little activities she liked, but as her condition worsened she could not redeem them. I remember that this made her really sad.

So this year I want to make a few gifts that she can use/have/redeem right away. But I would like your inspiration, as I am not really sure how to adjust my gifts or how to find gifts that are suitable for her condition (as mentioned Bell Score 10).

What she likes:

- she bought some old barbies recently, she said that the childhood memories made her happy (she got the ones she had as a child)

- she loves to spend time together with me. Just cuddling, watching a good Netflix show, have a good dinner (regardless of whether self cooked by myself or food delivery)

- she is really into the Harry Potter movies (already bought her all DVDs)

- she loves the autumn (the rain, the falling leaves, the cold), hates the summer (she doesn't like the warmth)

- she has her favourite sweets and snacks and kind of favourite restaurants where I order or fetch the food

- she has her favourite fruits

- she has her favourite musicians and comedians, I already bought her tickets for christmas, but we had to sell them because of her bad condition

I am really struggling to find some good ideas that will make her happy. If she would be healthy I would gift her a travel together to norway or sweden and she would be the most happy person on earth. Or a trip to London to see all the Harry Potter locations. I know that anything she likes which we could to together would make her really happy.

Some thoughts of mine:

- I thought about making her the "perfect autumn day": butter beer, Harry Potter, her favourite autumn sweets, good food etc. But autumn is still 6-8 weeks after her birthday and it will still be another voucher for later

- I thought about watching her favourite musicians or comedians on a stream/dvd and order a great dinner etc. + her favourite fruits

So I am looking for help, as the community of people who are self affected with ME/CFS migth have a good idea or inspiration.

Thanks for your help!

​

​This is where I realize that psychological health is just as important as physical health. Because of my stress and everything, I have made a lot of mistakes that directly worsened my physical condition. It is truly essential to take care of both.

​Unfortunately, we have normalized being stressed and sad, as if it were a regular state of being and we just had to ignore it.

​Yet, I now see that this stress has truly ruined my life, and on top of that, it worsens my current medical condition. I am not joking; people often minimize this or think it is nothing important... But actually, it is. It really is.

​Pay attention to your emotions.

I somehow ended up backing myself up with treatments to try and I’m feeling kind of frozen in indecision about which to go with. I am housebound, mod-severe for the last year. Suspected MCAS and pots, PEM, concussion like symptoms. Currently I take ultra low dose naltrexone (.5mg), coq10, Zyrtec x1 daily, magnesium, and just recently iron because my ferritin is low. Here’s all the potential new things I have in my possession/ready to go:

Upping the ldn dose
Oxaloacitate
Thiamine (vit b1)
Folinic acid (I have MTHFR gene)
Guanfacine
Ketotifen (my allergies have gotten worse with summer pollen)
Leaving for a different city for a week to stay in house that is confirmed to be mold free to see if there is mold in my house making me sick

It’s not a good idea to do any of them at the same time and I’m just not sure how to go about prioritizing. I have adhd which makes it worse 😭 I was excited to try Ketotifen but I heard some stories that made me nervous. I know I’m supposed to up my LDN dose cause it’s sooo low but I always feel a little weird when I up it so I’ve been putting that off too cause things keep happening. All of these things could have the potential to really help me but I just feel stuck :(

TL;DR - Has anyone experiencing perimenopause had improvement of me/cfs symptoms with hrt?

Long version:

My CFS was in remission for several years until COVID hit and it came back. Now every year or so I gain a new weird symptom or two.

In the last year or so I've also realized I'm almost certainly in perimenopause, and lots of my new symptoms could be either completely attributed to that or exacerbated by it. I was 37 when the pandemic hit and now I'm wondering if hormonal shifts could be at least partly to blame for my CFS returning since this peri bs has been going on for awhile...(I was just told at first I was "too young")

Notably, my fatigue worsens significantly right before and during my periods (much more than it used to -it's basically a crash now), and my most recent hormone levels for estradiol, testosterone and LH were fully half or lower than all my previous work ups over the years. Progesterone remains consistent, however.

My theory is lower estrogen = greater fatigue for me, in which case perimenopause could be a culprit? I also tend to "overreact" to hormonal fluctuations generally and I've read that especially estrogen can be all over the place during peri.

Just wondering if anyone has seen any me/cfs improvement with hrt for their perimenopause!

Hello! I am 17 and I cannot drive in a very car-dependent city. This means I can't work, I can't go to school on my own, and I am essentially trapped in the house.

I was learning to drive last year until I one day couldn't lift my arms. I was about to be on the level of highway driving. Now, I can drive but only for around 15 minutes on a good day which is promptly followed by a week of flare-up.

I need help deciding whether I should continue learning to drive and if there's any accommodations for my situation.

- My legs go numb or tingle and cramp within 5-10 minutes.

- My back becomes so distractingly painful and I need help getting out of the car.

- Since I am learning to drive, I get pretty overwhelmed to begin with. Having to deal with brain fog on the road has gotten me lost and almost into 3 wrecks. It's simple things I struggle with the brain fog: which side of the road I should be driving on, which pedal does what, how to turn, red means stop.

- I have been nearly falling asleep in public lately and I am terrified of falling asleep behind the wheel. Talking to my doctor about starting amitriptyline for fatigue.

Edit: Are there any stretches you might recommend for building driving muscles? If I find treatment for the fatigue, any modifications to my seat that could help? Could it be that my anxiety when driving is making this significantly worse than my body would naturally respond to driving? Anyone find success in a similar situation?

Extra information: I am parent-taught learner and my Dad drives with me. I have my learners permit until October of this year. I drive in a Ford F-150. I am taking 30mg of Cymbalta which worsens my fatigue drastically and does not help my pain. I have supportive people who are willing to drive me if I cannot permanently.

The despair always feels more real. The hope feels like “copium” as the kids say. But sometimes I’m huffing that stuff and covering my ears and singing “lalalalala” at all the people who deny any hope of recovery. I will reach some deep zen and something within me will flip and I’ll be healed. I’ll catch a cold or get a vaccine abd spontaneously recover. I’ll massage my neck and something will slip back into place and I’ll be healed. I’ll try another one of hundreds of pill and that will be the one. I’ll just slowly regain vitality until I’m not sick anymore.

But then it comes crashing down. And I see my life. And I think about the future. And no matter how I try I see only darkness. There has always been a deep pessimist within me. I am pessimistic as a protective mechanism. I cannot tolerate the feeling of hoping for something and having it not come to fruition. It makes me feel a feeling that is sort of like embarrassment only 100x worse. It is the deep skeptic in me. I contain no amount of magical thinking and every time in my life I have permitted myself even a sliver of optimism I have been thoroughly smited and punished for it by the universe. There is only so much that you can be beat down before you learn.

I cant live years in dark room, no sleep, adrenaline, elevated HR, i just want to go out and have fun. If im gonna do that i will end up back in bed, but whats the point for waiting? I cant even expand… like i dont care anymore what happens im suffering from years. I destroyed my body by not pacing. Now im just surviving. My baseline doesnt even exists.
My BF wedding is coming i am desperate to go.
Like who whas that unresponsible to crash and push themselfes for months with high hr adrenline insomnia?
I destroyed my health, now i cant even enjoy staying in the bed because there is no regeneration just stress on my body. Otherwise i would be stable; logically. Sounds, lights its too much. :((

Hey all! <3 I am new to the garmin4pacing game, I have the vivoactive 5 for a week now - so maybe it’s just a time question.
But I am quite confused at the moment cause all my data looks amazing and that doesn’t feel quite accurate at all.
I always recharge to 100% bb, sleepscore looks at least good and stress is okay (low at night, showing some high stress during low activities during the day).
But this is nowhere near how I feel.
I am a bit disappointed cause I was hoping that it would confirm and mirror my symptoms, how I saw it with other users.
Do I use it wrong?
And do you have over all tips on how to use it right?
I am using all those Jens Hansen Watchface etc.
thank you!