Heya! My girlfriend has both fibro and EDS. She’s been talking to me a lot recently about being really concerned about her health and weight. I want to emphasize that her weight isn’t and never will be a factor in how much I love her, I really do just want to see her happy again.

Here’s where I need some extra help - she has battled an eating disorder before. She started feeling a lot better after she got help and helped herself out of that.

But she talks to me like she’s on the other side of some peak in her life. We’re both 20, and she feels like her life is being stripped away from her. Reading through this subreddit I’ve seen so many people share that sentiment, but I’ve also seen so many people find hope and purpose.

I really want to support her in every way. She is my everything. But I’m scared, the only advice I’ve found for those with mobility challenges is to “count calories, count calories, count calories”
That is NOT an option. It’s such a slippery slope, and as someone who has body image and has experienced problems with food, it is absolutely the last thing I would wish upon her.

I don’t know if I’m phrasing any of this right. And there are probably a million things that she’s feeling and experiencing that I’ll never fully grasp, which is why I want to confide in this community. Literally anything would be a nice starting point.

Hi guys! I have fibromyalgia and chronic migraine... I'm tired of explaining for my friends and family how I feel. I'm looking for friends that understand my reality... If u are at the same place and want to talk dm mee ❤️

Some things about me:

• Brazilian

•24 years old

• graduate as geography teacher on May 2026

•have a dog: Apolo

•having chronic pain since 8 years old

•love TV shows, puzzles, music, reading etc

What a about u?

​

Hello. I am kind of new to this community, and I am curious to hear your stories of diagnosis, how long it took to get that diagnosis, your struggles, etc. I find other people's stories to be fascinating and insightful and I think it will help me better process my own recent diagnosis.

I have had a history of issues starting from when I was a teen. I'm 31 now. Back in the 2010s I was put through the rigamarole of tests after it turned out that I wasn't "overreacting" about my pain and symptoms, of which I had many, including really really horrible TMJD. After I fought for a referral to a head and neck surgeon and then asked for an MRI, we found I had severely damaged jaw joints and would likely need joint replacement surgery. I was then tested for every autoimmune issue under the sun because I was so young and the level of joint degeneration I had was insane. Then, I was tested for Fibromyalgia using the pain point diagnostic. Based on that, I apparently did not have fibromyalgia, because none of the pain points hurt, just "felt uncomfortable".

The final results: we don't know why you have all these symptoms and we don't know why your jaw is so damaged. There was no real followup. I got the surgery, things got better, but I still had a lot of unaddressed issues. But my quality of life was finally at a place where I could function enough to have a job, even if doing said jobs was definitely a constant internal battle.

Despite all of that, I did pretty well for myself. Graduated University, got into my career of choice, moved states, moved up the ladder. It all got worse again when I turned 30. All of the symptoms and flare-ups had begun escalating again. My new doctor didn't mess around and immediately ordered every test she could think of. She found I had a positive ANA result, but my tests did not pan out in not much else. But based on that, and my history, she immediately diagnosed me with Fibro just this last week. And unfortunately, due to how the Rheumatologists out here work, my referral for further testing was rejected.

Is Fibro the whole story? I kinda doubt it. But does it explain a lot? Yes. And I am finally getting put on some treatments that might actually help with my quality of life. I just hope it helps.

Or simply BREATHE. 😭 And both heavily.

But attempting for someone that does not suffer from this understand that it is CHALLENGING to EVEN breathe should be a craaazy thing to explain to people when u look healthy in the outside :/

Most of the times when I'm hurtin like that really bad and I'm in a conversation with sbdy I can only get monosylabic or just do small talk cuz i'ts getting soo hard inside myself to even let a word out.

Only with simply breathing I just feel the tension in my diafragma and tummy that won't let me exhale, and the neck pain and headaches it generates (that also exist in fibro on its own) it's just... I understand it is because oxygen won't get in your brain so easy cuz of tension, therefore, if its hard to breathe it will be even harder to TALK and think through it all lolol

I've been diagnosed 2 years ago but lived with this thing for 15 years -started when I was a kid- . In the last months or maybe years been having more anxiety due to flares and living with family again and they dont rlly understand fibro so a lot of the time they just think I barely speak or I'm in a terrible mood when I'm only just ✨hurting around😭✨.

Well, just little more detailed fibro things I feel lol.

I've been experiencing episodes of vertigo(i think?) and dizziness sometimes lately, when waking up either from a full sleep or even a little nap. its a new thing and its pretty disruptive, it feels like im falling & it lasts for hours, gradually improving, but for a while i really cant get out of bed. is this something that could be a fibro thing? does anyone else experience this or have advice?

I have fibromyalgia and ME/CFS. During flareups/ PEM I have to use a cane.

The ammount of confrontations I'm having with men while using a cane is incredible.

When I'm not using a cane sometimes guy's will try to intimate me but all Inhavevto do to get them back down is not be intimated and give them a mean look.

When I'm using the cane confrontations are much longer and make me feel like the situation could escalate to violence at any point.

I'm thinking of counter strategys but I wanted to know if anyone had tried them and how successful they'd been.

Fimling them and puting it on Instagram #bigMenYellingAtChronicallyIllGirls. Its leagal to do that here in the UK but they could just break my phone.

Strobe light for night. I used to carry one but I lost it.

Air horn

Tagging spray (UK legal alternative to pepper spray)

Just screaming at them and hoping they wont actually hit the disabled girl

Has anyone tried any of these and can tell me if they worked or suggest anything.

De escalation has been my first choice its just failed.

Edit: For people asking more about the men. Its always drunk or druged men and city centers or in a bar club setting.

EDIT 2: Please stop recommending illegal things (like hidden bakdes). If the streets are too rough for a chronicly ill girl I'm pretty sure prison would be too.

I’ve been getting hives for no good reason, most of the time being around when I get a flare. It’s always on my arms. Ives watched everything, what I eat, my laundry detergent, literally anything I could think of. I can’t pinpoint anything. Anyone else with fibromyalgia experience rashes like hives? If it’s not linked to your fibromyalgia, what other condition is causing this symptom? I have a list of illnesses, fibro just seems to be the one that affects literally every bit of my body.

Hello, I'm looking for advice for my GF who has fibro, I hope I make sense as english isn't my first language.

Lately she has been suffering from some severe bouts of cystitis and since all tests have come back negative (urine tests, Antibiogram, ultrasound, manual exam) she has concluded (she's a biotechnologist so ít wasn't an uneducated guess) that it must be interstitial cystitis triggered by fibro. My question is, for those of you that have experienced the same condition, is there something that helps you relieve the pain? Antibiotics are of course a no go since it's not infective.

Thanks in advance!

I can’t do anything, I sit at home all day while my boyfriend works, and then we hangout for maybe an hour before I have to go lay down again or sometimes (like today) he just got home from work and then left right away. Which is fine, I want him to have his own life obviously, he needs to be with people other than me. But it feels like im always alone. My only companion is my pain. I had a massive breakdown because I just feel so alone and im so sick and tired of being in pain. I just want it to end.

I'm on...

Amotryptoline

Clonazepam

Citalopram

Lanzoprasol

Carbamazepine

Fenofybrate

Something else for my cholesterol

Manjaro

Metformin

Insulin pens

And a new addition, ketamine.

I've had enough man. I lie here daily on so much medication to be in so much pain, so little desire to carry on. I can barely move, my mind is constantly confused, silence is so loud. I'm a 38 yead old male with a wife and 3 children, have been ill for 6 years now since my body welcomed a disease called sarcoidosis and since then my life has been on a debbie downer.

I work in assisted living and I love my job. I have been so torn but my pain has been so bad, I just started taking meds (pregabalin) and my doc wants me to take Cymbalta but we a waiting for my psychologist to approve that because I am taking Lexapro.. anyway I have been considering getting a different job because of my pain, I love my job so much, it makes so so sad it’s making my job so hard to do. But what are jobs to work that I could make enough money to live?

It has served me faithfully for 15 years, but now I have to apply it three or four times just to go to sleep. Driving me crazy. Suggestions?

Hi everyone,

​I wanted to see if anyone else experiences this specific symptom. Sometimes when I go to scratch a normal itch on my back, it feels like I catch a nerve or a specific spot "wrong," and it immediately triggers a long, intense bout of pain.

​Instead of the relief of a normal scratch, the area erupts into a severe, lingering ache that honestly feels like my skin is on fire or deeply bruised. It takes a surprisingly long time for the burning sensation to calm down, even from just a light or normal scratch.

​I know allodynia (pain from things that shouldn't hurt) and hyperalgesia are common with fibro, so I’m guessing it’s tied to that, but the sudden intensity of it always catches me off guard.

​Does anyone else deal with this? If so, have you found anything that helps calm the nerve flare down once you've accidentally triggered it?

I usually use Ruqui extra large. Open to suggestions:

I have fibro, me/CFS, hypermobility (not eds), Audhd. The rare moments I'm not in pain, I fall asleep fast like I've been drugged.

Cue in trying low dose naltrexone, 2mg. I see hope. It's my first day. It's helping a bit, like maybe half way. I. Finding myself feeling snuggly, and like I just want to sleep a lot. I don't feel sedated like other meds have done (gabapentin, ugh).

Have others experienced this? I know only time will tell. Curious if the med is making me tired, or I'm just feeling relief and exhausted.

Update: I read about the LDN and see now it takes a while to get going. So I'm likely feeling subtle changes, as I'm incredibly sensitive. This is why I mentioned the Audhd. The tiredness is probably more side effect than result. However, the cold is less prickly.

So i used to take 1200/2100mg everyday gained a ton of weight in the last 5 months so i decided to quit it’s been 7 days and ive decided to have alchol but it doesnt feel the same feels different i dont get the usual nice relaxing buzz why’s that is it cause im withdrawing im so confused it doesnt give me that nice relaxing buzz when i drink??

Even smoking weed during withdrawals doesnt give me the munchies or put me too sleep when it did before whats happening to me can anyone explain?

I've been going through hell lately and tbh have very little in the way of friends. i do some amount of YouTube sometimes. Play some games. Generally exist sometimes live in new Zealand. Sadly my city has no really fibromyalgia community.

Hello all

56m recently diagnosed with fibromyalgia & allodynia

I’ve had ongoing back issues for the last 30 years and over the last year or so started to feel what amounts to a sunburn on parts my body. I got sunburned a ton when I was a kid, so this is the closest thing I know which can relate it too

I can tolerate shoes, but socks, pants, & long sleeve shirts drive me crazy. Of course now I’m being told I need to return to the office for work (I’m a federal civil servant). I can wait for the Colorado winter and trying to wear shorts and a loose t shirt everyday.

All this to say: I’m diagnosed, but still relatively new to this world. Does anyone else suffer with allodynia and have the constant “sunburn” feeling? Has there been anything you’ve tried that has dulled the sensation to where it’s tolerable?

Thanks for any insight you are able to share.

Does anyone else experience random pains when you're stressed? for the last couple weeks I've had a bunch of random pains. multiple places in my face, also pain in my neck, and in my back too. I have no idea why. I've also had a bit of virus thing in my throat but not enough to get sick. I've been dealing with a lot of stress lately and idk if that maybe triggered my fibro? also I've lost like 3 kg in the last month for no reason. idk if that's related

i'm really starting to worry i'm not strong enough

Anyone else suffering with this? I have not been able to sleep much as I just cannot stop itching everywhere. It's never normally this bad, I've changed nothing. My nose and face itches, my torso itches, my head itches, my arms and legs itch, I just can't get away. I've taken allergy tablets in the vague hope it'll help, I've applied moisturizer, I've used cold compresses, but I'm just stuck in itchy hell

Anyone else suffering from this?? I feel like I'm going insane!

Hello! I will be moving in 3 weeks, and I have started packing today. I have moved countless times, but the last move was the 1st with my fibromyalgia and chronic illness flare ups.

The last move was so bad I ended up splitting and was soon diagnosed with dissociative identity disorder. The pain, exhaustion, and stress on my body was too much. I have no memory of packing my last apartment so I don’t know what I did wrong. That’s why I wanted to get some advice from y’all!

I live in a 1 bedroom fully furnished apartment, with my emotional support dog, and will be hiring movers to move everything. I am moving down the street so it won’t be as long of a day.