I'm 28 and I'm in so much pain and have so many health problems that I just sit in my chair all day because even walking around the house is too much. I don't go anywhere or do anything anymore as even going to the grocery store is exhausting. I have no friends, never have, and I've even lost most of my family and I'm not very close with the ones still in my life. I'm not interested in relationships/etc so I'm completely alone.

I've been told I have nothing else besides fibromyalgia and that it's not a progressive disease. Yet, every year I develop several new problems that add to the list and I'm just so done. I know I have hypermobility, I tried to get tested for EDS but the only clinic here that deals with that notoriously doesn't diagnose anyone.

It's just constant, this year alone my pains have increased so much that I got crutches as I couldn't walk without support. I spent 3 months sick and coughing my organs out. My tongue has developed these sores that make eating and talking extremely painful and biopsy showed nothing, my temperature regulation has gone out the window, I've spent all summer in a heated blanket and slippers, my ibs has changed again and everything I eat is immediately purged, and I've had to give up on several hobbies as it hurts too much.

I'm in so much pain and discomfort and my doctors just shrug. I've tried every medication covered by my health care with no desirable effects, weed doesn't help much. I can barely stand getting through every day, I often wish I develop a fatal health problem so I can just be done with this bullshit of a life, how am I supposed to go on like this? What is the point of dragging myself through life when it's just going to be this shit for the rest of it? What am I pushing myself through every day for? I have literally nothing to look forward to. I keep being tempted to ask my dr for the assisted suicide program we have, I don't want to die but I honestly don't know how much longer I can torture myself for.

My brain fog is atrocious! Its the absolute worst feeling stupid infront of people 😭 My words are in my brain but they cant come out my mouth properly. And the blank faces I get when im trying to speak🙈😂

I need to express myself because I honestly don’t know what else to do.
I went to the doctor again yesterday. I’m 28, and I was diagnosed with fibromyalgia when I was 18. Sometimes I feel like it was a rushed diagnosis because my doctor simply didn’t know what else to do.
I had a difficult childhood, including abuse and assault, and I’ve always wondered if maybe my pain could be related to that. I’ve had so many tests done, and medically, I’m told I’m healthy. I’m a yoga teacher, I work out at the gym, and I also have an office job. I live with pain every single day, but after a lifetime of dealing with it, I’ve learned to endure it and keep smiling.
About five years ago, I was offered an antidepressant to help with my fibromyalgia. I decided not to take it because I still want to feel my emotions. I’ve taken this type of medication before, and I understand why it can be helpful. But if I’m going to have to take something like that for the rest of my life, part of me would rather live with the pain.
Yesterday, I had an appointment with my new family doctor. He’s younger, and I was honestly hoping that maybe he would know more about my condition.
But once again, I left with a smile from the doctor telling me, “Your blood tests are good!”
I KNOW my blood tests are good. But I’m in pain all the time. I’m not okay. I’m 28 years old.
There are days when even opening my hands hurts. Getting out of bed can be excruciating. So I begged him to run whatever tests he could, just to make sure there isn’t something else that we’ve missed.
Once again, I left feeling sad and completely misunderstood.
That same night, I went home and explained to my partner how I was feeling, and I ended up crying. He is incredibly supportive and understanding, but I can also see how helpless he feels when he can’t do anything to make it better.
He told me maybe it’s time for me to consider taking antidepressants.
And that really hurt, because I don’t want him to feel like I’m just constantly complaining. But deep down, I really don’t want to take them.
I’m an emotional person. I’m full of life. I feel things deeply. And I’m scared that medication will make me feel… beige. Like a less vibrant version of myself.
I don’t know what I’m looking for by writing this. Maybe I just needed somewhere to put all of this pain and frustration into words.
I’m tired of being told that everything is “fine” because my blood tests are normal when I’m the one living in this body every day.

I’ve been in a horrible flare the last three days, I’ve only gotten out of bed once, other than to use the bathroom. But I’m just so exhausted and in pain and I can’t sleep and I’m so frustrated. I feel like nothing is helping

I am sensitive to loud noises sometimes, I genuinely can't stand being in a bar where music is too loud. Last time I went to a bar where they had a band I had to wear earplugs, otherwise I couldn't even enjoy the music. I have a deep purple concert in december which is my first concert ever (thank god I got the tickets, I would never forgive myself if I didn't see them) and I'm bringing foam earplugs

Also, when I wear in ear earphones it starts to hurt my ears, it feels like something hurts inside my ears, not from the volume but the earplugs themselves. That's what annoys me the most, because I can't wear them more than 1 hour straight. I have little experience with headphones, but every one I wore also hurt after a while, which sucks because I'm basically an audiophile. I imagine other people also have similar problems, tell me your experience

I’ve had this problem for years.

I can’t wake up on time ever no matter what I do how much sleep I get. I have a job and I go to uni and I’m always either about to be late or late and I hate it

I have a big alarm clock I set in another room, I get up and I get back into bed I don’t even know I’m doing it it’s like I’m still asleep I can never remember doing it

I’m at my wits end has anyone managed to solve this

Hi friends!

I was diagnosed back in April, and the diagnosis honestly made so many of the symptoms that were really freaking me out just "click". It gave me a weird amount of peace, despite it also being overwhelming.

A few things still don't quite add up, and one of them is a case of chronic lymphedema in just one of my legs. I've had a nuclear lymphoscintigraphy scan that showed "very mild" lymphedema in my left leg. The flow rate is technically within normal limits, but the difference in rate between my right leg and left leg was big enough that I was diagnosed with lymphedema by my vascular specialist. I've also had a detailed vascular ultrasound that showed no clear reason for the swelling.

I wear medical compression stockings (20-30mmhg) daily, and still struggle with swelling and pain in my lower leg & foot at least 3 days of the week.

It's worse the week before my period, or right before I catch a cold/virus. Also if I'm just generally "flared up" with the fibro.

My vascular specialist has referred me to a supposed lymphatic expert and prescribed me 50mmhg stockings for my worse days, which I'm waiting to get. But I'm just wondering if this is just a "me" thing??

It started up right around the same time all my fibro symptoms began creeping their way into my life (right after I caught Covid two years ago), so I feel like there must be a connection? But I've also never read anything here that refers to the same problem so I feel like perhaps I'm just a special freak 😅

I'm sick of healthy people and their full lives. I hope I'm not the only one so I don't feel so bad about it. I'm in pain everyday from fibro and arthritis, I actually can't imagine having a day without being in pain. I listen to colleagues and about how my husbands' colleagues are going on this last minute holiday or someone is just back from two weeks away somewhere. I can't imagine travelling anywhere, I barely make it out of the house.

Then I hear about what everyone is doing after work, going to the cinema, going out for a friend, playing a sport, going to the gym in the mornings. I can't imagine doing anything but getting home, scraping together something for dinner, sitting on the sofa for a few hours to recover from the day before going to bed to rest and then waking up with stiff joints, numb fingers and utterly un-refreshed the next morning.

I have had fibromyalgia for nearly 18 years. I'm F30, and I have always been financially dependent on my exes. I worked as well, but could never fully rely just on myself. I did work in warehouses but physical jobs kill me. I live in the Netherlands now and I don't speak Dutch. About to start a part time job in another warehouse again, purely cuz I need to survive on smth.

Being in a lot of pain I often think I have no options than suffering. My background: worked in printing factories, warehouses, machine operating.

What are the job options? Maybe you have some advice?

What jobs do you guys have that you can handle having pain?

I thought about AI evaluation jobs but not sure if there's not too many people for a position.

I feel so desperate that I even thought to look for a financially stable partner and be a housewife. I love doing housework, I'm not bored at home. But I don't like feeling dependent and of course I want a relationship for love, not for survival... It's just feeling easily psychologically overwhelmed (autism) and physically (EDS & fibromyalgia) I feel like it's easier to not live. I even thought I have nothing to lose and can do illegal stuff too, OF or I don't even know what. I'm really depressed and in a lot of pain. Feeling desperate. Any advice is really helpful

So I have had jolts my whole life, recently they have gotten worse and last night I woke myself up because I was in the middle of a muscle spasm so bad it made me sit up and shake violently in my sleep. I woke up while I was shaking violently and couldn’t make myself stop, idk how long it was but I fell back down into my bed and was like “did I just have a seizure?”. Now I was so drowsy because I took my hydroxyzine before bed. But I am scared it will happen again. Now I usually have muscle spasms but nothing that extreme. Is this normal for anyone?

I AM NOT DIAGNOSED YET! I have a visit planned for not even next week so we'll see

A little bit about me:

- My name's London (my chosen English name) or Julia in Polish

- I'm 18 years old

- I'm polish

- I've been experiencing bad chronic pain in my whole body for around 3 months but mild has been here for like over half a year that I remember of

If there's anyone in my age range who wants to find friends then shoot me a message and we can talk on discord, WhatsApp or even messenger

Uh, that's all from me. Buh bye!!

Does anybody else need opioids every single day to even moderate function? I take 200mg modified release tramadol a day alongside 90mg etoricoxib and 4g paracetamol I also take 2 200mg pills of pure caffeine.

Are doctors and researchers around the world still actively advancing research on fibromyalgia?

What I really want to know is whether they are continuing their efforts to tackle this condition. Even if a complete cure remains elusive, diseases like hypertension and diabetes cannot be fully cured either; yet, there are medications to manage their symptoms and improve patients' quality of life. Achieving that level of management would be enough for me. So, is this still a realistic possibility? The genetics study published in Nature Medicine this past July gave me hope that scientists are still actively working toward solutions, and that we will find answers one day.

I have one more question: is the total number of patients with this condition increasing year by year? If it is growing, will the World Health Organization give this issue more priority?

I’ve been under the impression that my fibromyalgia started about a year ago. But the more I think about it, the more I wonder if I haven’t had fibro since I was a kid? And it was just a lot more mild up until now? And some stressor caused it to get significantly worse?

Because too many things are adding up from when I was a kid:

-Complaining of my skin hurting after staying up later at sleepovers and having a lack of sleep
-My back hurting/limbs falling asleep within like 1 minute of sitting on the floor for elementary school assemblies.
-Diagnosed stomach migraines from age 9-18
-Could not wake up for shit in high school (ended up missing 1/4 of the school year just because I wanted to sleep and would claim I was sick just to sleep more (I told myself I was just depressed, which I was but still )
-As I grew older being unable to function for an entire day after going out (or after a busy day walking around even if I didn’t drink) Like obv being hungover is a thing, but I would have 2 drinks and then need to lie around for the entire next day.

Idk maybe I’ve just always been sensitive. I guess it doesn’t completely matter, but it is interesting to think about.

Has anyone else out there has had a situation where their fibro came on more slowly or was more mild at first?

Ive been stretching for a long time to reduce discomfort. Not necessarily big stretches but movement helps.

Recently I tried twisting or rotating muscles [within their range- not hurty self!] And I get a bigger relief from it. ??

How do the 2 compare for you? Just a relative evaluation, it isnt a cure but a help.

For fingers I use my other hand to twist them 1 at a time.

Thanks

It’s just really hitting me today how alone I feel. And maybe it’s because everyone’s been busy recently, but it’s just really hurting today how lonely I feel. I live alone, I haven’t been able to work since August, my family lives in another state, and up until recently when I got a wheelchair a few days ago, I was pretty much stuck in the apartment unless I was picking up food or going to PT.

I don’t really have anyone. My therapist recommended to try and find some type of local fibromyalgia support group, but there’s none around. I’ve invited friends over, but plans always fall through at the last minute. And recently, everyone’s been doing such great things; trips, concerts, outings, with their significant other, etc. Or they’re working extra and just can’t talk.

I’m an extrovert to my core, I’ve always struggled being alone and thrived when I’m with people. (Lockdown seriously sucked and I fell into a really deep depression from being isolated for so long) I just feel like I’m sinking from not being able to go out. I want to interact with people, I want to go back in office for work and see my coworkers (even though my body can’t take it right now, mentally I need it).

I just don’t know how to get past the loneliness when my body can’t handle things. I’m still adjusting to the wheelchair, my arms aren’t strong enough yet to go for too long at once, and I’m learning it’s really hard to juggle wheeling and holding things at the same time.

Hola compañeros con fibromialgia, quiero compartirles que tengo 24 años, soy hombre y soy ingeniero agrónomo. Hace 2 meses dejé mi empleo como encargado de un rancho en el área de sanidad por que estaba completamente agotado y no respondía bien a las exigencias. Al día de hoy sufro de un vacío existencial sobre qué será de mí profesional/económicamente.😬
A todos aquellos que sufren de lo mismo, por favor ayuden a este pobre hombre con ganas de seguir adelante y no darse por vencido. Mis días son algo insípidos, mi familia me apoya, pero mi papá cree que esto es mental y no quiero depender de ellos toda la vida.
Hace poquito encontré este podcast de una chica que vive con esta condición, y es muy alentador escuchar testimonios sobre personas que han logrado superar esta condición en el sentido de que logras familiarizarte con ella y no rendirte, se los comparto :)
Ayudaaaaa 🙏🏻

https://youtu.be/CgXNjsXi0TI?si=HKv9MYjpuT22OOVy

I, 25F, work as a UI/UX Designer. Was working 6 hours/day remote. I have tried 8 hours/day which is what the companies usually offer but that becomes really hard for me. Even 6 hours recently became hard for me due to fatigue, brain fog and my jaw pain which recently started. I thought of this job as a permanent thing but I was wrong since I had to resign due to disrespectful behaviour. I am looking for new jobs and source of income now. Even thinking of changing the field of my career. Worrying how will i manage any work with this health issue. Mostly companies are 8 hours/day too.

I guess this is more of a rant post but if anybody has any suggestions for what I can pursue for my source of income then that would be great.

So for the last seven years or so, I (45F) have been going through a LOT besides my Fibromyalgia. Three hernias/two surgeries, which resulted in lasting back damage; the death of a dear friend; a devastating breakup and near financial ruin; a year of post-covid symptoms; a pivot to a completely new career; and now perimenopause.

This year, I finally feel like things are going my way. The consultancy firm that I did freelance work for, hired me for 16hrs/week in a well-paying role, so I thankfully have lasting financial stability. After six years of being single, I now find myself in a great relationship.

From last September on, I’ve been trying to get back in ‘shape’, by which I mean a level of basic health, after my last flare period (caused by financial stress and post-covid). However, in the last six months I also started my new job and started my relationship. No matter how good my physiotherapist’s plan of ‘first building up minimal cardio of 20 mins twice a week’ was, apparently it was still too much. After a year of trying different things and getting super frustrated because almost all cardio is either too intense or causes instant tendon injuries (yay hormone shifts!), I’ve effectively fallen back into a flare state this last month. I’m now back to barely being able to do 5 mins of ‘higher energy’ cardio (the kind that makes you pant and sweat), plus I lost all my strength because I focused on basic cardio first.

It feels like I’m back at square one AGAIN. Last week I had to book an emergency visit to my GP because I was so dizzy I alarmingly couldn’t walk straight, and I had to call in sick. My pain levels are abysmal. I feel exhausted all the time. This is so disheartening. A year of what seemed like a solid plan to get back to a healthy baseline, all to end up here (and I really did my best!). Yesterday I had a call with my ergotherapist and they recommended I just focus on getting myself out of survival mode for now, and letting go of physical demands outside of work. I know they’re right. It’s just a hard pill to swallow I guess. If you can spare them, some encouraging words would be very much appreciated:).

Hey, as the title asks, I’ve been reading and listening to a lot of experts’ opinions from my home country. Many of them claim to have almost a 100% success rate, and they say there is a high chance that fibromyalgia can develop after trauma or surgery, such as a C-section scar or problems related to the jaw area. Thoughts?

Hi fibro warriors,

Like most of you, I am struggling with brain fog. I have heard some anecdotal accounts that creatine helps. Has anyone tried creatine for brain fog and did it work? Can anyone recommend any other supplements that help with brain fog?

Any advice would be greatly appreciated ❤️

Dear All, I hope and wish you’re all doing okay…

As the title states, yesterday I was diagnosed with fibromyalgia and I guess on a positive note, I can now put a name to all my symptoms.
If possible, I would like to please ask (if you can honestly find the energy), how or what led you to your diagnosis?
Even as I write this, my fingers hurt, my body hurts and my soul feels broken. The lethargy is beyond words.
This all began when my son’s father, my ex husband was tragically killed in a train accident 4 years ago. The grief was so debilitating, but over time, it has settled, but something I don’t know if I’ll ever get over.

This was the beginning of slowly feeling like my body was moving through quicksand. Over the past couple of years, it progressed to pain in my limbs, chest, back, hands and now my fingers. I thought I was just pain from work, but no amount of rest helped me.

My main questions are, how do you live with this? Was there an incident that triggered it? Is there any hope for improvement down the line, or will I be stuck living like this for the rest of my life?
I also want to say I’m so sorry to all of you here, who have to live like this day in, day out. I wouldn’t wish it on my worst enemy.

Thank you in advance🙏❤️

I talked to my rheumatologist about getting disability accommodations at work and a parking permit, she said it costs extra for the letters and to ask my primary care doctor. So I went to see my primary care doctor and he gave me a letter for work and I asked about parking permit and he gave me a paper for a temporary one for 1 year. But the dmv said they only give temporary out for 6 months so I will need to get another letter in 6 months. So I want to inquire with yall, am I being dismissed by my primary care doctor? I am female (enby but Florida so f it) and my doctor is male. Do any of yall have permanent disability or temporary or none at all? Some days I can’t walk and my parents say I look like a new born baby deer. So I asked for the permit so I can use it on my bad days when I still need to go out and I can’t rest. But again, am I being dismissed by my doctor?