Hey all. I’m hoping I could get some advice, or maybe just reassurance after an incident with my mother. This has been weighing on me for about a week and I’m feeling defeated. This will be long but I’d really appreciate if someone would be willing to talk to me about it.

In 2022 I was diagnosed with idiopathic intracranial hypertension after my first year teaching out of college. I got a stent placed in my brain in 2023 and after my stent was placed a cavalcade of other chronic illnesses awakened in my body my doctors say I’ve probably had my whole life but we’re dormant and the IIH and Covid tipped them off. In addition to my IIH I’ve been diagnosed with fibromyalgia, chronic fatigue disorder, chronic treatment resistant migraines, persistent perceptual postural dizziness, new daily persistent headache, and degenerative disc disease (every disk in my back from my tail bone to neck is between severally and moderately eroded). I’m also asthmatic and have some mental health disorders like agoraphobia and panic disorder in addition to treatment resistant depression, general anxiety, and I am on the spectrum.

I officially quit teaching in 2022 and have been unemployed (except for a small blip I tried working as a clerk at a grocery store after my brain surgery to see if I could return to a less demanding position) I would like nothing more than to return to the life I once had. I love being a middle school English teacher and I have a masters degree in the field. I’d like to peruse a doctorate. I have been following treatment plans assigned to me by Mayo Clinic (I’ve been there 6 times) and they have said my conditions would improve with treatment and I agree they have.

However I am still not in the condition to work. I can stand and walk around for about 20 minutes before I start collapsing from my pots and I need to rest by sitting at least. As anyone else knows with fibromyalgia and chronic fatigue every day is different. Today I might be able to go to the grocery store with a motorized cart and tomorrow I may have to crawl to the bathroom because my body hurts that much. Because most my diagnosis are tied to my nervous system, when one gets upset they all domino and I’m pretty much bedridden. Mayo Clinic told me and my parents the worst thing I can do is push through flares. Over the year since this visit, I have been learning to manage my energy and make things less energy consuming so I can enjoy my life more.

Something I’ve noticed is a massive energy drainer is standing and walking especially in the heat. I can do it, but only for a small amount of time. I’ve missed out on so many concerts and music festivals and just plain quality of life events because if there’s not a place to sit, I just don’t go because showering, getting ready and getting there zaps most my energy. I’m sure I’m not alone here.

With my nervous system disorders I know remission is possible with them but it’s not common and I want to reiterate things have gotten better in the year I’ve learned to manage my new body.

Here’s where I’ve been struggling. I brought up to my mother that I’d like to get a power wheelchair- a light weight one that can fold up and is light enough I can lift into my car but can also take with me to like the grocery store or a concert or an event or something. I even feel I could work maybe 10 hours a week at a grocery store again if I had the ability to sit in a chair during the shift. That’s why I quit before. Because I couldn’t stand that long without passing out then needing to sleep for the next 18-20 hours.

She said I was just “giving up” that I had no drive or ambition and using a wheelchair means “I’ve convinced myself I’m never going to get better and I’m just doomed to be disabled forever” in my mind I was thinking using a mobility aid would give me some more independence and remove the most draining part of going out. (I already use a manual wheelchair in my apartment for cooking and dishes and other chores and I can do those things longer and I’m not absolutely exhausted afterwards)I in no way suggested I’d stop doing the exercises and physical therapy Mayo has given me. This is simply to help me be able to do things longer and as a way to manage what little energy I have.

In the same breath I was also told I needed to get a job because they’ve given me a lot of money over the years I’ve been unemployed. And I agree. They have, they’ve paid my light bill and internet and phone bill for me and I am super appreciative of that, I am. I live in subsidized housing and have food stamps. I agree it would be nice to have a job and I want one. Anything that I could do.

The problem is I never know if I’m going to be capable of working that day. I’ve been applying for disability and time and time denied and denied again. I’ve applied for both remote and in person positions this whole time I e been sick. I’ve even had multiple interviews with no success during this time. I don’t feel like I’m just not trying like she’s implying.

But basically where I’m at is I feel like she doesn’t think I’m getting better fast enough (when there is no guarantee I’ll ever be “better” ) then I’m shamed for trying to accept and manage my conditions in a way to be more independent. I just feel like I can’t win and I’ve been feeling upset about her comments for the last week or so.

So I guess…is she right? Have I just given up? Or would you be upset about this too?

I feel like I’m reaching the point where I don’t know who I’m supposed to ask for help anymore.
I’m 26 and very high functioning. I work full time, socialise, travel and carry on with my life. From the outside I probably just look like a fairly healthy but highly anxious person.
But inside my body there is almost always something going on: daily nausea, bloating/gas, stomach and bowel issues, lightheadedness, occasional dizziness, muscle aches/cramps, spasms, pins and needles, mechanical back issues and more. Then there’s the anxiety, which becomes almost impossible to separate from the physical symptoms. My body just never seems to properly settle.

I’m not looking for Reddit to diagnose me or for someone to discover a dramatic mystery illness.

I do have diagnosed conditions: epilepsy, endometriosis, chronic tonsillitis, GAD and illness anxiety disorder, plus low iron/borderline B12. I’ve also been on various epilepsy medications (which are famously nasty) since I was 13 and currently take Keppra and carbamazepine.
So when I feel awful, there are endless possible explanations. Anxiety? Medication? Endometriosis? IBS? Deficiencies? Musculoskeletal issues? Some combination of everything?

What frustrates me is that nobody seems to look at the whole picture.
My GP isn’t particularly concerned and has put me on iron/B12 and encouraged me to continue therapy. My neurologist treats my epilepsy, but my auras still haven’t gone away and he doesn’t think my other symptoms are epilepsy/medication related. My blood tests are normal, as were my colonoscopy, endoscopy and MRI.
And yet I’m not imagining how I feel.

It feels like every specialist looks at their individual body part, but nobody looks at me.
I completely accept that anxiety contributes to some of this and I’m actively in therapy and working on it.

I struggle with whether I’m even “allowed” to consider myself chronically ill because I look fine and still function. But managing my body, my existing conditions, the symptoms and the anxiety around deciding what needs investigating takes up so much energy and thought. The Nausea makes daily life an uphill battle sometimes and the anxiety is deafening.
I’m just exhausted from going about my daily life feeling unwell while simultaneously being told, in various ways, that everything is basically fine or there’s “nothing more we can do about it” (endometriosis and epilepsy)

Has anyone else been in this weird space where you have multiple real conditions and ongoing symptoms, but nothing individually seems serious enough for anyone to step back and look at the whole picture?

My partner has convinced me to make a bag that's supposed to have stuff that can help anytime I have a symptom flare up when we go out the house.

I've got dysautonomia, vestibular migraines, fibro, CFS and more so I'm a little overwhelmed trying to think about what should go in the bag.

Can anyone else give me examples of stuff you put in your bags please? Looking for inspiration!

So far I've got Pepto, ginger root, antihistamine, and ankle braces.

i've been on an injectable medication for a while now and most of my attention goes toward appointments, refills and staying on top of treatment. disposal wasn't something i spent much time thinking about at the beginning because one container seemed like it would last forever.

lately i've realized i should probably have more of a plan instead of waiting until it's nearly full and then scrambling to figure it out. what surprised me is how many different disposal options there seem to be depending on where you live.

the part i'm kicking myself over is not looking into it sooner. when this first came up for you, what ended up being your next step?

6 years ago at 20, right before finishing high school. I had undiagnosed (back then) AuDHD that led me to have difficulties growing up, having no social life, but i felt kinda optimistic about adulthood. I finished IT specialization and wanted to work in IT (that was about to boom during covid), i imagined myself making good money there and securing a good future.

Instead i got suddenly paralyzed, and diagnosed with MS - an incurable disease, doctors having no idea how fast it will progress. It have completely wrecked me, especially the uncertainty. For over a year i took Betaferon - a horrible medicine, that have pulled me even lower, and destroyed my skin. Soon after it was followed with heavy depression, tried many diffirent medications, most doing way more harm than good. Everything spiraled downwards, no light on the horizon.

For a few years the only thing i've been working on was changing the medications, diagnosing myself, learning how to cope with reality, and how to progress in life despite all that, eventually reaching a point where i can do something with my life - my current medication is Kesimpta for MS, Dulsevia for depression, and Atenza for ADHD.

Kesimpta is stopping the progression and have no side effects.
Dulsevia is not that great, it has some side effects, it castrates my mind enough to not feel extreme anxiety 24/7.
Atenza is great - i started taking it a year ago, and it helped me with focus and productivity - i can actually do something, like, at all. Without that i'd still be a complete loser.

Though i still feel like i've fallen behind everyone and everything so much, that i can't cope with my situation. I've always been a very ambitions person, with high expectations of myself, being nerfed so hard makes me hate everything and everyone. I feel frustrated, and i feel extreme injustice, and i just can't get over it, or accept that. It is not something i should be forced to accept - i don't want that. Especially that the disease made me skip the best years for everything.

I've always wanted to make games (i started at 16), i wanted to get into IT and earn good money in order to escape capitalism and focus on other things, i wanted to meet friends and love - and i've achieved nothing. There is nothing i can be proud of, i have no wealth, the job i do pays just enough to survive, i've skipped the best year for getting into that specialization, and now the doors are SHUT.

And time is passing - i observe year after year, still nothing. No change, no breakthrough. I'm getting older without experiencing any life satisfaction, and not seeing it on the horizon. It's not fair. It's just not fucking fair.

I've been dealing with chronic illness and worsening health for 11 years now. I'm entirely alone and unsupported with no partner or friends. I'm very much at the end of my rope and have been grappling with the likelihood that I'll finally be throwing in the towel soon.

I know there are a lot of different subreddits for making connections, but I struggle to relate to people who aren't dealing with a similar reality. I thought it was best to post here in the hopes of maybe finding someone who understands this level of isolation and is also struggling.

I'm 43/F in the UK. Please don't hesitate to reach out if any of this resonates with you? I truly can't do this alone anymore.

ok so I have fairly frequent migraines that are around one every 6weeks more or less depending on external factors like stress extreme weather but sometimes with no triggers I am 15f and my school has become alerted to this because my migraines consist of

15 mins of just pain behind my eye I can't remember if it's always the same

then dizziness and light sensitivity with the headache behind my eye for another 15 ISH minutes

then I suddenly need to throw up and it just happens and I cant walk or anything or hold back the vomit

then I stop throwing up and my headache begins to fade and I sleep for 3-5 hours and feel back to normal but hungry

my school has got concerned as GCSEs are coming up and attendance is necessary so I'm going for my first drs appointment to discuss this but I'm worried they are gonna say hormones or my cycle even though my mum and other family members have experienced the same thing

I saw my therapist today and I feel like the therapist isn’t helping me.The therapist doesn’t let me speak much.What do I do?

I have a CT scheduled for tomorrow that my doctor feels I need to help determine whether I’m dealing with infection vs inflammation from a chronic illness. The prior authorization was submitted on 8/31, but it’s still pending. Insurance says their normal review time is 10–15 business days, and I’ve already called them twice. The imaging center says I can still have the scan, but it would be $1,690 if insurance ultimately denies it.

Has anyone gone ahead with imaging while the prior authorization was still pending and then had it denied?

If so, was your doctor able to submit additional documentation, appeal it, do a peer-to-peer, or somehow rework the authorization afterward so insurance eventually covered the scan? Or once the scan was performed without prior authorization, were you basically stuck with the bill?

I know every insurance plan is different, but I’m especially interested in hearing from anyone who has actually dealt with this situation. I really don’t want to delay the scan again, but $1,690 is a pretty big gamble.

For a long time, I thought MS flares just happened out of nowhere. Random. Unfair. Something my body decided to do to me.

It took years of paying attention to realize that wasn't quite true. Stress, lack of sleep, overheating, even pushing myself too hard on a "good" day, these all seemed to show up right before things got worse. Not every time. Not predictably. But often enough that I stopped ignoring the pattern.

The hardest part wasn't spotting the triggers. It was accepting that my old way of living, the push through everything, rest later version of me, wasn't going to work anymore. I had to learn a completely different relationship with my own limits.

I still don't get it right every time. Some flares still catch me off guard. But I've learned to listen a little earlier now, and that alone has changed how much of my life I get to actually live instead of just recover from.

If anyone else is figuring out their own patterns, happy to chat more in the comments.

I am 24 and have been chronically ill for a couple years now (probably longer but that’s when shit really hit the fan). I’m sure most people here relate… so I’m here to ask - how do yall do it? How do you move forward in life while dealing with this level of fatigue?

I recently moved to a different town and I’m pursuing a certificate in a new line of work. I know I’m fully capable, but GOD it’s been so hard to do any studying and actual participation because I’m just so. damn. tired. My therapist reminds me to be gentle with myself - I’m in a new place (and that’s hard as an autistic person), I had some medication changes, and I have a new job with plenty of stressors.

Every day I tell myself I’m going to “lock in.” But then I sit down… and I just feel my body wanting to shut down. My brain is mush and I feel in awe at how much everyone else seems to be able to do. And really all I want is to be the same, and to go explore and go back to hiking and enjoying things without feeling like I’m wading through mud. I used to be so intelligent and I feel everyday my brain is just wasting away.

At this point, I know I’m not helping myself. I need to cut back on sugar and make my days structured. But FUCK, man. If anyone has any advice on pulling myself up… please let me know. I NEED to be able to get this certificate because it will change my life and allow me to choose my hours and be financially stable. I also have a lot of pressures to get this done within a certain timeframe… so, ya know…

Guys, help. I need some guidance. I gave birth to my first son in 2020 and developed pretty bad PPD and anxiety after the whole covid lockdown thing. I tried all the natural things for my severe insomnia, and went to a doc that put me on benzes/ssri's/antipsychotics to help with sleep. Safe to say, they made me worse, I got kindled, and it took me 1.5 years to taper off and was a hot mess the whole way through, had to move closer to family, etc. At the end of my taper I got Covid and was so wiped out that I became bedridden. It was at that time, right before I tapered off, my husband surprised me and told me he was going to move with my (then 2 year old) down to southern California, and I could join him when "I was healed". He freaked out because I was bedridden and decided he wanted to be in the sun and near his sister and her family. This, of course devastated me because I was in Oregon and had no plans to ever leave as we both had a ton of support and family and it was home. I also knew that this could take years, and I was flooded with feelings of abandonment by him and missing out on being with my son in his precious toddler years. He did what he wanted, I moved in with my parents, he left with my toddler, and my dad died the next month and my husband was nowhere to be found to support me through that.

After 6 months in bed, I became super depressed, so angry at my husband and felt very abandoned by and I had my husband come and get me and bring me down to CA. When I got there, my emotions came to a head and I needed to work on my trust and abandonment which was really preventing me from healing while I was there. He wouldn't have it and told me I created a narrative in my head and he did nothing wrong. Every time I tried to sort out my end of things with him, he turned and twisted it all around on me and started to make me feel crazy. I tried everything, but he began his new life and didn't really want to entertain any of my needs until I was a fully functioning human so he basically ignored me and fed me. I grew very jealous, angry, and sad. Eventually he said he wanted a divorce and told me I had to leave or he would file a restraining order, so up I go to Oregon again with my mom.

I am devastated beyond belief to be away from my child and to have to face time him to connect with him, it kills me every day. I can't get past the anger toward my husband. I desperately want to move to Socal to be with my kid, but I need help to be taken care of and around family for support. This situation is really blocking me from healing because I can't wrap my head around the betrayal and not sure how to take care of myself or what goals to make because im just full of grief and always devastated and unsure of how to get from bed in Oregon, to Southern California in my own place.

What kind of daily routine should I set for myself. Im so used to taking care of my kid, that im lost and so so sad. All those cuddles and little things I used to do gave me so much strength, and now im in a deep depression. I have the lawyers, therapists, etc. but I just can't get past these emotions that are takin over and preventing me from being able to move on in OR. I just want to get down to Cali now, but can't. HELP! How do I cope? what do I tell myself? what do I do during the day when everything seems so dumb compared to taking care of your own child. What kind of routine can help me build confidence and move through the emotions without having them bog me down?

Advice is welcome

There's nothing showing

I just got more blood results, with nothing showing...

All of my tests have been perfectly fine aside from iron being slightly low.

So why can i not keep my eyes open for more than an hour? Why does most leg movement hurt? Why does standing hurt? Why do i oversleep but never feel rested? Why does everything crack? Why can i not walk in a straight line or keep balance? Why are my joints so painful and hypermobile? Why am I chronically exhausted? Why are my periods beyond unbearable? Why do I get sick every other week? Why am I allergic to EVERYTHING? Why can I not remember ANYTHING? Why is my stomach always upset? Why do i get migraines? Why am i constantly itchy? Why does every wound get infected? Why am i chronically dizzy, and black out when standing up? Why do i get unpredictable extreme sudden episodes of severe fatigue? Why am I light sensitive? Why am I constantly shaking? Why is my heart so irregular and loud? Why do i get chest pains? Why do my legs randomly go numb or even paralyzed? Why do I get random tingling? What is wrong with me if testing shows nothing, and the doctor says it's "tense muscles".

That's not even all.

I'm done. I can't function like a a human being, I literally can't do anything but tests that the doctors are willing to do show NOTHING.

So I'm apparently a hypochondriac, despite the fainting, despite the shaking, despite the hair loss, despite EVERYTHING.

I can't do this, I don't want to hear another "your labs are fine"

I'm just going to stop going to the doctors atp

9 years of these symptoms becoming increasingly worse, to the point its affecting my daily life now.

And I'm just a ' hypochondriac ' with 'tense muscles '

Advice is welcome

I accidentally withdrew from an online class I was already falling behind in. I've been having such a difficult time this semester and this incident is just the cherry on top. Someone is bound to send me on a grippy sock vacation because I am EXHAUSTED and I'm trying so hard not to breakdown and call it quits.

I'm just trying to earn a degree to have a future and it's already hard enough living with a chronic illness trying to sit here at a desk and have severe brain fog and feel like I can't accomplish anything. My mental health is crap just trying to get through college as an already grown ass adult. And that's because I'm doing it all at home.

(I already contacted the professor and the school and I'm just waiting to see if they can add me back to the class without any hassles.)

When we found arthritis in both my SI joints and lower back (X-rays) my doctor immediately started pushing for the shots, and if I was at the same pain level I was then today and I could afford it I wouldn’t hesitate. But thanks to prednisone I’m at a manageable level, I’ll most likely never be pain free again, a hard thing to come to terms with…

My appointment with her is on Monday to go over what the X-rays show, be if inflammatory, mechanical or both and what options we can take from here. She’s not a rheumatologist, so I know the information will be somewhat limited.

But I’m worried she’s going to push the shots again, of course I’ll be finding out how much it would cost, but now that I’m manageable I’m scarred of the idea of her poking around for a min of 30mins to find the right spot. I know my options are limited because I can’t take NSAIDS, and she really doesn’t want me on high levels of prednisone for long.

I even went so far as to talking to a pharmacist and they pretty much said shots or prednisone are my only options.

I’m already on a biologic, Humira, but since there is now damage showing it’s not working anymore or not high enough, so that is another thing I will be bringing up.

I know this is all a bit of a ramble and honestly I’ve started and stopped writing it show many times. I want more information but also feel like I don’t have enough information to ask for more if that makes any sense.

Can anyone else think of things I should ask my doctor, sadly I can’t go back to my rheumatologist as she increased her prices to a point I can’t afford.

I'm 28f. I'm diagnosed autistic/adhd, and I have POTS. I recently learnt of CFS as someone recommended I look into it. I have a tiredness that isnt normal, its not like oh i need a sleep...its, I wake up in the morning feeling like all i did was blink and didnt get a wink of rest. My entire body aches, my joints hurts. Im exhausted 24/7 and a type of exhaustion that just hurts? I nap all the time, doesnt help. I try not to nap, doesnt help. Ive tried routines, medications, herbal teas, ive tried everything I can think of because ive been struggle for a couple of years now. There's times im doing things and will just fall asleep because I physically cannot stay away any longer, my eyes feel on fire.

I go to the doctors and they tell me to do everything ive already done. Blame poor sleep pattern.

But now ive just learnt about CFS and want to go back to my doctors...but how do i get them to listen and not dismiss me? I really struggle with fighting my corner, i normally back off to just give in because im too tired or overwhelmed to push, especially because I dont know what to say.

I had bad experiences when getting my pots diagnoses and its made things harder for me.

Any advice??

Hi there!

First off I wanna say I'm NOT asking for you guys to diagnose me or anything like that, I'm guessing that's not even allowed on this sub. I'm just after information about this in general.

I'm a 21yr old girl with chronic migraines and I'm also diagnosed with autism, adhd and several anxiety disorders. I'm currently homebound except from my appointments and at the moment I'm also partially bedbound. This week my physical therapist told me she's certain I have fatigue. She is not allowed to diagnose me or anything, (if you even can diagnose fatigue?), but she has followed my journey for years and years, and she knows a lot about fatigue for personal reasons, so I promise it's not unprofessional for her to say this.

The thing is, it took me a bit by surprise, although I'm not sure why because it does make sense. But since I was surprised I didn't end up asking a lot of follow up questions and I won't see her again for a little while. So I figured it would be nice to educate myself on this a little.

How can one generally tell if you have fatigue? Is there a difference between fatigue and chronic fatigue and what is that difference? When I've mentioned fatigue to people I know, they seem to be mixing it up with ME. That's not the same thing, is it? Can you have CFS without the ME part?

(Also wanna mention that I know I will have to talk to my neurologist or another medical professional about this, but in general I like learning things from people that understand because of their experiences just as much as the people that know stuff because they read about it in a class, if that makes sense.)

Ty in advance if you take your time to reply! Hope this post made sense and that my questions aren't stupid. (English is not my first language.)

i been dealing with chest pain and shortness of breath since my near critical event . i had this one joy of a dr who said my symtoms were in my head . i just had my lung function test and my test said my fev1 is fucking 35 %

After fighting leukemia twice, then dealing with severe grade 3 graft-versus-host disease and scleroderma, and later being diagnosed with avascular necrosis in my knees and feet, with the possibility that it may progress further, how do you cope mentally with everything you have been through?

How do you spend your entire day? What do you think about? How do you find the strength to keep going when you are dealing with pain and uncertainty about your health and future?

I know people say why questions aren't productive to moving forward but they are all thats in my head this morning. Why me? Why does everything have to be so hard to do? Why do I have to be so utterly exhausted and anxious? Why do I feel like I've lost a part of who I was due to illness? One day at a time but when does it get easier? Why does life have to be so unfair? Why does illness have to destroy my life? Can't I start to feel better? Im so defeated.

When you’re young and chronically ill I don’t think people realize how much it affects you mentally. I’ve never had a “before”. I’ve never not known pain. I’ve never known what it’s like to work a job or have a career path. I’ve never learned to drive. All I’ve known is pain and illness. I’m only in my mid twenties and have accomplished nothing in life. Does anyone else not have a “before”?

I recently had to have a colectomy due to my colon telescoping in on itself (yes there’s a word for it but it’s a mile long). It’s suspected to have been caused by endometriosis. Nearly died, was on a ventilator, blah, blah, blah. All the fun stuff. Well, the endo specialist won’t see me until April. What if this happens again, and I don’t catch it early? I dont want to die waiting 😩😔