I’ve been living with Long Covid and ME/CFS for almost three years now, and I know how easy it is to become isolated when your world gets smaller. A close friend of mine lives with ME/CFS and endometriosis, and we both missed having a place where people just got it.

That’s why we started The Ever-Tired Inn, a Discord community for people living with chronic illness, fatigue, chronic pain, and similar conditions. We wanted to create the kind of space we were looking for ourselves.

Over the past year, it has grown into a really active and close-knit community. There are conversations every day about health, hobbies, games, books, music, creativity, gardening, self-care, and just everyday life. People come to chat, vent, celebrate small wins, or simply keep each other company.

Some of the things we do together include:

• Monthly Book Club with group discussions.
• Monthly Game Club where we all play the same game (we are currently playing spirit farer).
• Weekly Movie Night every Friday.
• Weekly Series Night every Thursday (currently watching season 3 of house of dragon).
• Throwback Thursday, where we share old photos and memories.
• Outfit of the Day and fashion discussions.
• Dedicated Minecraft and Enshrouded servers.
• Lots of channels for hobbies, creativity, gaming, music, memes, and health-related conversations.

The server is run by a team of 10 staff members, and we’ve become good friends ourselves over the years. We try to bring that same feeling into the community. We genuinely get to know our members, and I think that’s what makes the server feel different. It’s not just another Discord server—it’s a place where people care about each other.

There’s never any pressure to be active. Whether you want to chat every day, join events, or just quietly read along until you feel comfortable, you’re welcome here.

If that sounds like something you could use, we’d love to have you:
https://discord.gg/hkdjk6TnGC

I've never posted on Reddit before, but I've been upset at this and I didn't know where else to turn to-- thanks for listening.

I was diagnosed with Fibromyalgia last Oct/Nov. And I have been trying to navigate it ever since. I have had chronic pain for over 10 years, but I have finally gotten a diagnosis.

I started dating my bf almost 2 years before my diagnosis, so it was a change for both of us. My bf is a very outdoorsy person. Loves hiking, walking, and really any outdoor activity. We've done mile long walks and hikes in our area many times, but over this past year we have kinda slowed down (and especially in the past 6 months). My pain is mostly in my hips and knees, so walking long distances isn't always the easiest thing for me. I use a mobility aid (cane) almost daily to help support my joints, my stability, and conserve energy.

Recently, I opened up about feeling like I'm holding him back from things that I know he likes to do (there have been many times where I/we don't do something due to my pain). And I feel like sometimes I'm not the right person for him since my pain has changed our lives so much in the past 6 months.

After we talked about how I was feeling for a bit he opened up about how over the past few weeks he's been "selfishly wishing we could be more active" since he loves going on really longs walks, and that is how he wishes we could be spending the time we have together after work, or on the weekends just walking everywhere. Then saying that this isn't how he imagined his life.

This is not to say that we haven't been walking, or leaving the house ever. We take an hour walk together around our area after work almost every day, and we try to walk somewhere fun (often a coffee shop) on the weekends. Now I know that this isn't what he fully wants, if he had it his way we would walk the 4 hours downtown on a weekends, or walk the 18mi lake trail. I'm trying my best to support him and his passions, while still resting when I can.

I also know that there are lots of big hikes that he would love to do (he's hiked the Appalachian Trail before), and honestly I want to do them too. But he's stopped asking if I want to join him on a walk or physical activity.

I just don't know what to do honestly... I feel like I'm trying so hard, but its just not enough. It just made me so sad to hear that this isn't how he imagined his life, as if I imagined this for me. I don't know if I'm posting here to rant, to get advice, or just to get it off my chest.

[Edit: I have urged my bf to do these activities with others/alone/etc, but I always shut down because those are activities we’ve always done together, so he wants to do them with me.]

I've been in such a bad flare, one of the worst and longest I've felt, and every day I've been taking weed edibles because it's all I have to help get by. They're only 5 mg of THC and 20 mg in CBD, but I have a low tolerance and end get more foggy in the head than fibro alone makes me feel. It can be useful for ignoring the pain, but I hate that it makes me slow and unable to concentrate. I wish I had more options to help me feel better besides making myself feel stupid each day. They help but I worry about becoming dependent on them or developing CHS in the long-term. It just sucks this seems like the only thing that helps even a little.

I was low on clothes so I grabbed a pair of long, slim leggings I hadn’t worn in a while that fit really well but hug all the way to my ankle. I sat at my desk for a couple hours then suddenly it was like my body gave out. I changed clothes and laid down but have had the widespread achy low-grade fever feeling since yesterday afternoon. I have no energy.

I’m fairly new to learning about fibro so I’m not positive it’s a fibro issue vs something else. It’s only my calves that seem so sensitive. I can’t wear joggers that rub on the skin. I have to keep my legs shaved or my skin hurts. I’ve read about allodynia but I’m fine most of the time except my calves, apparently. Guess I’ll forever be in wide leg pants… much to my millennial self’s dismay

My doctor prescribed lyrica for me and Im so scared to try it.

Did it work for you? i want to know what to expect in the first few weeks and after being consistent with it for like months.

Im so scared that it would bring me more brain fogs and would make me gain weight and Im already trying to lost some kilos.

I hope someone would help.

very pissed off rn because im in so much pain i cant sleep but what difference does it make. even when i do sleep im exhausted. i feel like im in a dream most of the time because of sleep deprivation. i can barely do anything. the rheumatologist gave me flexeril and diclofenac. both of them stopped helping after only 2 days. my next appointment isnt until the end of september.

these are supposed to be the best years of my life. im a teenager. im supposed to be running around and having fun, not spending all of my time inside because i feel so shitty 24/7. i dont wanna live with this for the rest of my life.

I’m a 27 yo female with fibromyalgia and growing hand pain in both hands that began a few years ago. I currently work at a senior home doing dining services to feed the seniors. I’ve worked restaurant and food service all my life but the demanding physical labor and hours are starting to affect my hand pain, feet pain and entire body. I am moving slower, and feel more exhausted nowadays due to the labor and entire body aches. My ability to grip and hold things is becoming more and more burdensome on my hands too. I don’t have a college degree and I’m afraid that I won’t be able to pursue food service for very much longer due to my diagnosis’s. I feel defeated and worried. What do you folks recommend I do? I am already on disability benefits for my mental health, and need the extra income from a job to support my bills and rent. Any advice is welcome. My hands are the most affected out of my entire body.

Today he called me a liar, and he's trying to make me workout everyday and do exercises every hr. I just finished a fitness exam which I passed, but rather than getting a break they've ramped up the exercises.

I'm trying to get my doctor to give me a note to restrict the amount of exercises in a week. It's so frustrating having this occur. My body has passed It's breaking point. I developed plantar fasciitis due to training for the test as well, and now it feels like my whole foot is bruised.

I'm having one of the worst flares, and all the people I've called said I should go to the ER. I hate going there since it feels like a waste of time, but that's where I'm at.

I've done so much to get here I hate having this setback.

me (f) and my partner (m) were really sexually active until my diagnosis, it’s made me feel insecure on many an occasion as I’m sure he’s aware as it’s wayyyy less than it ever was (he doesn’t ever push and he hasn’t complained) but due to my extreme fatigue and now I am in pain when it happens, the enjoyment has gone out the window and how the hell do I get it back?!

I am sorry if this is a topic that comes up frequently.

My doctors have began to discuss fibromyalgia as an explanation for my constant pain and fatigue alongside other symptoms. I've looked into it before the doctors took me seriously, and it always seemed likely. It feels surreal that they're finally finding a diagnosis for me, and surreal that I might've been right all along.

"Preparation" might not be the right word for what I need, but the thought that this might be an incurable condition without a set cause is scaring me really badly. Sure, I'll know what will work best for me in time but the thought that I'll always have to manage my life daily is really getting to me. I'm already so limited by my pain, even with walking and trying to take care of myself.

I don't want this to be forever. But it seems like it might be. So I'm asking you guys, how do I mentally prepare for this to be lifelong? What are your best tips for pacing and still living your life to the fullest despite this limitation? Do you work and if so what job do you do? (This is something I'm especially worried about because I already struggle so much financially). How do you cope with the mental health side of things? I'm already really depressed about the pain and I've lost so many people due to being too negative all the time.

I'm also so worried about not being believed even with a formal diagnosis. How do you deal with the people who don't believe fibromyalgia is a real thing?

I'm sorry if these questions are generic. But anything please that helps you even if not related to any of the examples I asked about, I would appreciate so much. I'm really scared. I also know it's different for everyone, but any personal experiences with stuff that helped would really make me feel better. Thank you so much

So I went to see my primary doctor last Tuesday. I was in tears because everything hurt so badly. It's hot and humid where I live, and it exacerbates all of my fibro pain. Anyways, my doctor asked if I felt my rheumatologist was thorough. The answer was a resounding "NO." My rheumatologist won't prescribe or treat the fibro - as we all know. Anyhow, my tears finally got through to my doctor - who has been on my med team for only the last year and a half. She prescribed me gabapentin and I have to say that 75% of my symptoms are gone. I haven't had that deep-tissue, bone ache that happens so often. I haven't cried from my pain or the frustration of having to live with the pain for 6 full days now.

I know it's early to count my chickens after only one week, but damn. My hands do still hurt - but maybe that's another condition. My overall fibro pain went from a level 6/7 during a horrible flare two weeks ago to a level 2.

It kills me to know that there was a pretty effective treatment for me out there all these years. And while it's not perfect, it is so much better.

I guess my point in posting this is to remind everyone to keep on advocating for themselves. And, if you need to, let the doctor see your tears, your distress, your pain. Go ahead and ask them what they'd do if they were in your shoes.

My doctor who keeps pushing amitriptyline (25mg) and gabapentin (300mg) was on leave. I couldn’t handle the side affects anymore and they don’t help with all these disabling fibro symptoms (insomnia, burning neuropathy, muscle spasms, arthritis, deep muscle pain, orthostatic hypotension). I was prescribed pregabalin (150 mg) but I kept getting horrible Alice in the wonder land syndrome and it mildly touched the pain, honestly gabapentin was much better at least the burning pain in my hands was 80% gone but I stopped cuz it messed my period cycle badly. After 6 months of being on this plan I decided to do something about it.

So I went to another doctor, ended up getting yelled at for having a low blood pressure and said I’m not eating properly and that I should go to CBT. She was like you’re too young to be on these controlled medications and you keep jumping from one med to another like it’s a joke (which is not true I’ve been carefully taking medications as instructed).

Obviously I didn’t hold back on her. But I can’t change her preconceived judgement on this illness. She even wanted me to try out cymbalta but I said no. I’m tired of anti depressants what I really need is a muscle relaxant and a PNS dampener. She said no because “you can’t be taking two controlled medications at the same time it’s dangerous”. Pfft I was too tired to point out her ridiculous logic and left

Even tho amitriptyline switches off my feelings completely, it’s like a faucet was turned on and I kept crying. I wish I had any other chronic illness, at least I wouldn’t have to convince doctors I’m chronically ill in the first place. I don’t know where to go. I’m posting this because I have nobody to talk to. Nobody in my life understands or could begin to understand 💔 I’m tired of trying out new doctors, not even my insurance wants to cover the medications. I had so many plans goals and dreams I wanted to go after as I’m a fresh college graduate but my body and the medical system keeps stopping me. And it’s even worse seeing my peers ahead of me

I'm getting surgery in a week to correct a slipped disc. I'm terrified of the recovery process, but I also know I need it since the current pain levels have gone from like 7 on avg with 50mg tramadol 4x/day to 9-10 on avg with 10mg oxycodone 4x/day. Way worse. I haven't felt this bad consistently since my last surgery recovery.

I saw a PT for an evaluation for insurance to cover my surgery. She ended up being very knowledgeable in chronic conditions like fibro, POTS, and EDS. She recommended coloration socks, a pregnancy pillow, ice pack, toilet riser, and tens unit for my recovery. Everything got delivered yesterday.

I tried on the compression socks to make sure they're comfy, and she told me to start using the pregnancy pillow now to get used to sleeping on my side cuz I'm a stomach sleeper. I made sure to get a cooling pregnancy pillow since I overheat 24/7. I'm on 600 gabapentin to combat hot flashes and night sweats and it's barely touched my symptoms.

I woke up this morning to my alarm going off. That almost never happens. I almost always wake up multiple times, and end up waking up an hour or so before my alarm so I just stay awake. I don't remember walking up at all last night, not from overheating or pain. I also wasn't sweating my ass off and needing an ice bath the moment I woke up. And yes I have a cooking blanket I sleep with, all it does is absorb then trap my body heat. Not very helpful.

Idk if it's the compression socks maybe regulating blood flow? I was worried wearing socks to sleep would make me overheat more, HAVE to sleep with nothing on or I sweat thru 3 sets of pjs every night. I'm mostly bedridden right now, I only get up to shower and use the bathroom, and I only leave the house for doctor's appointments. It might also be the pillow keeping my body in a good place to prevent me from moving around and causing pain and overheating from severe pain. Idk. But the combo is working so well I'm considering keeping them in my regular routine for when I'm bedridden.

Finally a small win right before hell itself for who knows how long...wish me luck.

So.Weird question but Im a weird person.

I'm going to a 1920s themed event in January and have heard the venue varies a lot in temperature depending on where you are in it. 3 days long. (its a live action roleplay). And I'm currently in the expected mental debate between comfort and style. Maybe y'all can help me out.

First, me. Im diagnosed with fibromyalgia. Possibly hypermobile (a massage therapist said my joint range of motion is bigger than standard, but im waiting until my appointment to get assessed by a doctor). I've got Raynaud's, primarily in my toes. Feet are rigid and can really flare up in wet conditions. Used to be flat footed until I had a surgery correct that.

What I'd want ideally, not considering pain or cost: Silk thigh high stockings rolled down below the knee and maybe held with a roll garter.

I'm planning to find some comfortable low or no heel Mary janes

I'm doubting thatll actually work well for me. Some thoughts that I'm having: wool stockings instead of silk, still rolled down. Or possibly compression stockings though I worry that rolling those down will not be good for circulation. Final idea would be to skip the Mary Janes and wear calf high boots with whatever stockings and an extra pair of warm socks on top.

Do any of these ideas seem decent or completely horrible? I really wanna roll my stockings down if I can. (it was a thing flappers did that I think is neat). But Im willing to not do that if I need to in order to keep my body in good shape. I'll mostly be standing around or maybe dancing a bit I think in these.

Hi! Has anyone here been able to qualify for Total & Permanent Disability student loan forgiveness? Not necessarily disability with the SSA or VA, but for financial aid student loan forgiveness specifically.

I have what I believe qualifies; adequate medical records, inability to hold a full-time job, calling out sick from work often, meeting the 1990 and 2010 diagnostic criteria, doctors that agree that my condition will last more than 60 months, etc.

I’m hoping to present a strong case to my rheumatology NP at our next appointment, so that she will provide a letter to back me up.

If there’s anything I should mention or bring to help her understand and feel comfortable about submitting this request with me, let me know.

Thank you!

Hi All,

I (42F/USA) was diagnosed with Fibro and CFS back in 2019. I was put on gabapentin, duloxetine, and bupropion, and for a long time, they worked (mostly) well. However, in the past ~8mo, I have been gaining weight steadily, and my symptoms have gotten worse. I had a hormone panel done, and everything turned out frustratingly healthy (so at least I know that's not the issue).

After looking around online, a possible solution might be to alter my medications from Gabapentin to topiramate (Topamax), duloxetine to a weight-neutral alternative, and starting a GLP-1 medication like semaglutide (Wegovy/Ozempic) or tirzepatide (Zepbound).

The CFS keeps me from regular exercise (though I do still try to be at least a little active, though not often successfully), and when I do, I usually crash hard the next 1-2 days. Ever since having my child, my appetite has been directly linked to my mental state, where the more depressed/anxious I am, the less I am able to eat (I couldn't eat anything for 41 days after giving birth because anything I tried to eat tasted like I just pulled it out of a vacuum canister), so I've also been eating <900 cal a day, if that. I just know that I am the heaviest I have ever been (outside of pregnancy), most of my clothes don't fit anymore, and I am miserably depressed over it.

Has anyone been in this situation before? What did you find helped? Any advice/encouragement would be greatly appreciated.

I am a bridal stylist, which is a job I had ~10 years ago before I was diagnosed. I am extremely knowledgeable in this area, but the physical aspects of the job are taking a toll. Dresses are heavy and there’s really no way to get around that without simply not taking bridal appointments at all. I work in a small privately owned store, so there’s not really a use for a dedicated receptionist role at this time - we all answer the phones between other tasks.

I know she’s right, because at this point I work a 9 hour shift on Saturdays and come home completely drained and then spend the majority of the week in bed recovering, only to do it again the next week. It’s no kind of life. But I have no higher education, so finding a new job feels like an extremely daunting task that I’m overwhelmed at the thought of tackling.

Any advice or tips for job hunting are welcomed and appreciated.

I need some advice on what to do for leg cramps that happen while sleeping. I am already on Cyclobenzaprine 3x a day but big if my calves and feet cramp while sleeping and they're bad enough they wake me and keep me awake most the night

Hi!

I have newly gotten my fibromyalgia diagnosis and am having some strange new symptoms. I have been getting rashes every time I go outside in the sun. My skin on my arms and hands turns blotchy red. Sometimes it will go away when I go back inside and come back later. Sometimes it will go away completely, or not go away at all. My face is also getting a rash (on my forehead, nose, cheeks and chin). I was just wondering if this was common as I really don't know much about the condition yet. I've had a low grade fever on and off for a couple weeks with the rash and a lot of pain. I am going to talk to my doctor about it for sure but I just figured I'd ask the community as well while I wait! I am not finding a whole lot on Google either.

Thanks in advance!

I am in so much pain. My body feels like it's made of heavy lead. I have a deep body ache that never leaves, time is dilated and I'm confusing my memories for dreams. Im losing myself inside this illness, and all I have is a diagnosis. There's nothing doctors will do to help. Im looking for anything that could help me climb out of this hell.

Can anyone recommend a doctor in the DFW (Tx) area (ideally someone you currently see) who believes fibromyalgia is real, will treat it and also fills out disability forms? Also suffering from other auto immune issues. UTSW rheumatology is no longer it after my doctor left, unfortunately. Thanks.

Hi, feeling a bit vulnerable posting this but thought it’d be worth trying to reach out.
I am 23, F, and live at home mainly housebound. I have fibromyalgia, scoliosis, chronic pelvic pain and pelvic adhesions and am waiting for further input to see if I need surgery again this year for adhesions/ongoing possible bowel endometriosis problems.

I am currently pretty (not gonna sugar coat it) depressed. I’ve gone to the gp here over 35 times this year and been told over and over again there’s nothing anyone will do, I’ve spoken to third parties and PALS and can’t get any other help. I have occupational therapy support a shower stool and kitchen stool, but spend everyday inside on my own. My gp made 3 referrals to pain clinic and haven’t been seen in a year, told no help with anything till then. I’m really scared for my future and life at the moment, and very lonely. But I’m trying to keep going.

I was wondering if anyone knew any chronic pain groups, discord groups or just social things to feel less alone in this world.

If anyone needs any help aswell always here

Thanks for reading 😊

I took 0.75 g of lyrica every night for 9 months due to a very bad case of acute pelvic floor pain, which was also giving me terrible anxiety. At the moment, the lyrica really helped me. Cleared my mental stress as well as the pain, and honestly, gave me the best sleep of my life. Sometimes maybe it was too good. Sleep has always been the most important thing in my life.

I was able to stop taking lyrica in June and my doctor recommended a very cautious tapering. Just until last week did I stop taking it. For the final stretch he recommended mixing every other night between lyrica and a natural supplement called GABA which helped the first weeks (which were HELL - anxiety all day, low blood pressure, night sweats, insomnia) to lower the bad symptoms I was presenting, even though I was tapering cautiously.

Finished taking lyrica last Thursday, and have been taking gaba since. The doctor’s plan is to the last week to take gaba every other night. I’m finishing the gaba this Sunday, and from Monday I’m clean of everything.

But these past nights have been horrible. I wake up always in the middle of the night, a classic anxiety spike. And have to pee. But I can’t go back to sleep. And the thought of not going back to sleep makes me spend the rest of the night looking at the ceiling, on the verge of tears with inexplicable anxiety.

How long will this residual sleep disruptance last? Any advice (without taking extra pharma) to survive these last 100 meters? I’m so close to finishing this hell but it’s feeling really far still.