At 54, after 30+ years of pain without release, I thought I had come to understand pain, my pain. I thought I knew what the worst pain was, I thought I know how my pain felt.

Then came last Saturday when while already in a flare from getting my flu/covid shots, at about 3am I started feeling sharp pain on my right side back/front just below the ribs. Couldn't sleep, kept getting worse, and worse, and worse. Around 6am I woke my partner and they took me to the Emergency Room where after 3 more hours of pain, pain where I couldn't open my eyes, had tears streaming down my face, where I'm told I was writhing on the hospital bed unable to stay still, moaning and crying out. Pain where I had no ability to respond to questions from the nurse/Dr. (thank the gods for my partner). Pain that Morphine couldn't touch... Finally after 6 hours of this new over the top pain they found a medication that allowed my gallbladder attack to subside.

3 days later I still feel remanents of this pain over the top of my daily fibro pain. I have to have it removed soon they say.

But all I can think is, thank whomever that my daily pain is not this bad. Now I just hope to get it done soon, before another attack, and hope that I can return to the pain I know and have lived with for as long as I remember.

Sometimes, a new perspective is gained... still hurts though.

Been considering it, but I’ve read that there can be complications for people like us.

Do any of you have so many doctors and appointments that when someone calls and leaves a message about Dr. ____, you don't know who they're talking about because they didn't say what doctor's office she is?

Someone called me a few weeks ago telling me the doctor wanted to see me, it was a voicemail but I forgot who the doctor was. I listened to it a few times before I went to my list of doctors and finally figured it out.

The good news is, I got an appointment pretty soon after so I didn't have to worry. But man, i wish the nurses who called remembered to say which office it was besides just the doctors who needed me to make an appointment.

I have eight steady doctors right now so if I don't remember their names, I don't know which doctor I am going to see or which office to call.

Minor rant

Check your Super Insurance cover to see if they offer any early intervention, or Fibromyalgia support services. Mine did not include IPI but did include early intervention assist cover, which allowed me access to the More Good Days program (specific Fibro online program), included.

Wanted to share in case this helps others.

hiiii everyone. i’m looking for people’s experiences of coming off pregabalin, particularly after being on it long-term, and any advice on managing withdrawal. i’m obv going to discuss this with my GP and wouldn’t stop or change my dose without medical guidance, but i’d really appreciate hearing from people who’ve actually been through it because i feel like withdrawal and side effects aren’t always taken seriously by healthcare professionals.

i’ve been taking pregabalin 300mg daily (150mg twice a day) for around 5 years, originally prescribed for anxiety. my anxiety has improved over the years, whether that’s because of the medication, therapy, personal growth or a combination of everything, but i’ve remained on it. i also have several chronic conditions, including fibromyalgia, endometriosis and hEDS, which cause significant chronic pain. my GP has previously suggested that pregabalin is probably helping with the nerve pain too, which is one of the reasons i’ve continued taking it.

the problem is that i’ve become increasingly desperate to come off it, partly because of how awful withdrawal is whenever there’s an issue with my prescription.
even missing one dose can trigger really intense withdrawal symptoms for me. if i miss a full day’s medication, i can become so physically unwell that i’m unable to work. i experience nausea, shaking, sweating, brain zaps and extreme psychological distress. the emotional side is actually quite frightening, with intense crying and a feeling of being almost on the verge of psychosis. it’s honestly horrendous, and it’s made me realise how dependent my body has become on taking this medication consistently.

unfortunately, prescription issues do happen. recently, my GP surgery has started issuing my prescription to the pharmacy on the day i run out, and they’ve refused to move it forward even by a day, despite having done things differently in the past but it leaves very little room for error if i’m too unwell to get to the pharmacy, the pharmacy doesn’t have stock, or there’s any other delay. i end up feeling like i’m pleading with people to make sure i can access my own medication on time, which feels incredibly humiliating and i’ve had doctors allude to me missusing it or taking more than i was supposed to. i know its a controlled drug, but it’s distressing to feel as though i’m constantly having to justify needing a medication i’ve been prescribed and taken as advised to.

i sometimes feel that healthcare professionals underestimate my experiences of side effects and withdrawal. i’m autistic, and i do wonder whether differences in sensory processing or how i experience physical sensations might contribute to how intensely i experience things, although idk whether that’s actually the case. i also have a history of mental health difficulties, and i sometimes worry that this affects how seriously my concerns are taken.

recently, because my chronic pain has been particularly bad, my GP even suggested increasing my pregabalin dose. i was adamant that i didn’t want to increase it. i’m already struggling with the thought of being on it long-term, and the idea of potentially having an even more difficult time coming off it is frightening.

i’d really like to hear from anyone who’s come off pregabalin, particularly after taking 300mg daily for several years. how long did you take to taper, and how difficult did you find withdrawal? did you experience symptoms even with small dose reductions, and what helped? were you able to keep working, or did you need time off? how did coming off affect your chronic pain and anxiety? i’d also appreciate any advice on what to ask my GP for in terms of a manageable taper, withdrawal support or anything i could ask for that might alleviate the withdrawal effects.

i know everyone’s experience is different, and i’m not expecting some kind of miracle tapering plan. i’m just trying to prepare myself and advocate for appropriate support rather than going into this feeling completely in the dark.

i honestly regret starting pregabalin, because i never knew how difficult it could be to come off it. i know it may have helped me at points over the years, but feeling this dependent on medication and being so frightened of what happens when i miss a dose is really affecting my quality of life.

if you’ve been through this, i’d really appreciate hearing your experiences, including the shitty parts. i’d rather have an honest picture of what tapering can be like than have my concerns dismissed or be told it should be straightforward. <3

Today is Horrible. Hip flexor Quad pain, Hip joint pain is horrible . It is beyond anything except my past pre back surgery pain. Position changes..trying to walk to "loosen the muscles joints up etc. Nothing including my meds are relieving at all. I am so over this. Any suggestions?

My best friend has fibro and her symptoms get worse in cold weather. Now the temperature’s changed so much she’s having a really hard time coping. It genuinely breaks my heart seeing her in pain/worn out because of the cold! any suggestions for things that really help you out at this time of year?

please send in anything and everything that keeps you warm/helps pain/fibro flares. I wanna help a friend out and see her thrive this winter!!

I've always wanted to have kids, I'm 22 now, and i was a depressed teen, I thought I wouldn't live until 18, and I did, but still I never had enough hope I would stay alive until not so long ago. Now my life is better, I have long-term plans. My hopes and dreams changed a lot with time, naturally, but having kids was one that never changed. My conditions always were: I will have kids once I manage to have good conditions, so I can raise this kid in the best environment I can offer. I love the idea of influencing a small person from the moment they are born to be confident, resilient, caring, and self-sufficient person while still nurturing the person they are meant to become, and getting to know this person as they find out who they are (and im a psychology major, the last few years the idea of having a child avaliable to test parenting techniques is funny to me)

but today I had a terrible flare up, because I slept a little bit less then I should and traveled to take my grandpa to the doctor, im not his primary caretaker but he trusts me and i love him, so whenever im needed I insist on doing everything I can to help care for me. it was about 8h of caring for him, doctors office paperwork and things to solve, about 3h sitting in an uncomfortable chair (me and a few other people just decided to stand, so it wasn't a personal sensitivity, those chairs suck), and dealing with the complex diagnosis and treatment (nothing life threatening btw). It was about 8h, the whole process, 6am-2pm, arround 11am i was already so tired, but I had to keep going, and when i got home, i was DESTROYED, 0 energy, i forced myself to do the bare minimum and it was so so hard, my stomach turned against me, my spine feels like a bunch of knives and my head is so confused

then, while crying and screaming in pain, I realized that I could not raise a child without being in constant intense pain, and this is hurting so much more than I thought it would, I feel kinda silly for feeling this but im just so sad, I just lost something I didn't even have. A good part of my mental state getting better and a huge motivation for me to keep trying to get better is so I can provide for myself the scenario where I could raise my children without worrying more then the necessary, I was trying to stop smoking so I could live for them, that thought was also inspiring me to do better in college, and I finally have a boyfriend. I wanted kids even if I had to raise alone, I thought of adopting, but having someone by my side that im sure would be a great dad made that future actually possible in my head. I know i can have other motivations for those things, but right now, im just really sad for losing one that was so important to me.

i can't care properly for a child if I cant even handle a similar but WAY EASIER and with less duration version of a child that would actually need me 24/7 for like, 9 years, before getting a little more independent. Kids aren't really known for letting parents sleep or rest.

I was ok with the possibility of not having kids because of external factors, but having this one reason that already exists,b elongs sonely in my personal situation, and doesn't have a cure completely needing my plans is just, so strong, it hurts so much that its something definitive that I cant do shit about

Anyways, this is a rant, but I really wanna ask for the moms of reddit who have fibro:

• how do you do it?

• how much does it wheigth on your body?

• Do you regret having kids when you feel sick?

• Even if you regret it, is it worth it?

• With the wisdom of your experience, would you recommend me to insist on this dream despite the pain, or do you think it is better for me and especially for the kid to just drop it?

thank you so much for reading my rant

After months of trying to get my doctor to listen to me, she finally agreed to give me a rheumatology referral for fibromyalgia, but honestly, the appointment left me feeling even more confused and hopeless.

I have SO many symptoms that seem consistent with fibromyalgia. I experience burning sensations, electric zaps, nerve pain, muscle and joint pain, extreme sensitivity, and so many other symptoms that are affecting my daily life. I have insomnia, brain fog, constant pain and chronic fatigue. I can barely carry a bag without my hand cramping up, and sometimes my body feels like my bones are literally falling apart. My symptoms are making it incredibly difficult to function, let alone work. I also suspect I may have small fiber neuropathy because of my burning and nerve symptoms (please see my previous post for more details).

The frustrating part is that my doctor told me she doesn’t think it’s fibromyalgia, and when I asked her why, she said some of my symptoms don’t fit, specifically the electric zaps and burning sensations. I was genuinely confused because aren’t burning sensations and nerve-like pain commonly reported with fibromyalgia? She said fibromyalgia is more about joint and muscle pain, and I was sitting there thinking, I HAVE THAT TOO! I have the muscle and joint pain, along with all these other symptoms.

She eventually agreed to refer me, but she warned me that most rheumatologists don’t specialize in fibromyalgia and that the wait could be up to a year.

I’m honestly terrified because I’m currently on sick leave, I’ve exhausted my benefits, and I can’t apply for disability without a diagnosis. My doctor basically said she doesn’t know what I’m supposed to do in the meantime. She also suggested occupational therapy to help me manage my symptoms, which I’m open to, but I’m still left wondering how I’m supposed to survive financially when I’m too unwell to work.

I have a few questions for anyone who’s been through something similar:

Does anyone know why my doctor would dismiss fibromyalgia when I have widespread muscle and joint pain, burning, electric zaps, and so many other symptoms? Are burning sensations and electric shock like pains not common with fibromyalgia?
Has anyone had a doctor doubt that they had fibromyalgia but eventually received the diagnosis from a specialist?
Is occupational therapy actually helpful for managing fibromyalgia symptoms?

I’m feeling incredibly lost. I just want answers and some kind of support because I can’t keep living like this, but I also can’t afford to be unable to work indefinitely. I feel like I’m stuck in limbo, waiting for a diagnosis while my life is on hold.

I was diagnosed with fibromyalgia a year ago about a year after I got too sick to work. I woke up today in a funk, unable to explain it until I finally tried to get up, and the pain took my breath away 🙃 I get so angry and depressed with breakthrough pain that I'm ready to end it all. I also have BP2, AuDHD, and suicidal ideation. I was thriving and pretty active literally a month before it all came crashing down. I have a caretaker now, but I don't feel I'm being cared for to my standards. I have no one else to care for me in my family so I'm grateful but my living conditions aren't up to my standards. My expectations are simply to have a clean home and healthy food. I feel like beggers can't be choosers. How do you move past it? What has everyone else's experiences been?

I'm always torn between trying to be preventative due to immune vulnerability vs. that the vaccine tends to put me in the hole for up to a week.

I was hit by a semi-truck while inside my off car without the seatbelt on a year ago, I saw an orthopaedic surgeon and he said he wouldnt operate on my spinal injuries (half a dozen disc injuries), because he worries it will aggravate my fibromyalgia. What. The. Hell. My mum and I don’t even think it’s fibro, we think it’s lupus. I’m in constant pain and suffering and they won’t even give me pain medication. I find it so frustrating and unfair to not operate on someone because of the POSSIBILITY of it making fibromyalgia worse. The risks are:
A: it fixes it and I’ll be in less pain
B: nothing happens and it stays the same
C: it makes it worse and I’ll be in more pain

I started probiotics (like the kind with several million CFU’s of lactobacilli and bifidobacterium) September 2025. I was on LDN 3mg everyday for fibro and could no longer afford it. I had some flare ups and then about 1 1/2 months later, my chronic constipation was gone! I was religiously taking this probiotic and the fibro pain disappeared.

My ANA titer in Aug this year rose from 1:40 when I was diagnosed 2023 to 1:80 speckled. I’m a 33 year-old female.

I started a GLP3 in Aug and my gut slowed down significantly. I was afraid that it would bring back the pain. I doubled up on the probiotics (maybe overly cautious) and so far it’s been about 3 months and I’ve been blessed with not having anything significant.

Has anyone else found benefit from probiotics?

I read some people go through a “cleanse phase” which shows up as generalized pains (it was true for me too), then afterwards it stops. Takes about 45 to 90 days.

Obviously, consult your provider and pharmacist before starting something new. Surprisingly my Urologist was the one who liked the probiotics I picked. I spoke with my Rheum and he said it’s possible that the brain-gut axis responded to there being less waste and inflammation. Continue to monitor and regular lab work.

Hello! I (31F) have been diagnosed since last year, after 4.5 years of tests. I have recently been having severe leg spasms similar to seizures only from the waist down. I usually have leg twitches/shaking and a cricketing my feet at night, but this is so much worse and completely uncontrollable. I have never had it this severe and I am completely out of breath and sore after it’s over. Last night was somewhere between 5-10 minutes long. Is this normal with fibro? If so how does one get treated/tested for it

Compañeros de esta comunidad, les traigo una invitación. Estoy aprendido a sobrellevar mi condición, y hay días que inevitablemente son difíciles para mí y otros que son más llevaderos.
Creo no ser el único, esta condición nos convence de que estamos solos, o incomprendidos, pero también se que podemos empatizar unos con otros y compartir aquello que nos ha ayudado, así como nuestra manera de sobrellevar esta condición.
Si te gustaría hablar de ello, envíame un msj privado, y así de esa forma podemos crear una comunidad.

Dejo claro lo siguiente:
-No se venderá nada (Nada de “recetas milagro” o
“Suplementos”)
-Confidencia total
-El grupo será creado para compartir tu experiencia, cómo sobrellevas la situación, lo que te ha funcionado y lo que no, y un espacio abierto para expresar las emociones (20-25 min)
-El grupo tiene como propósito dirigir a las personas ha escuchar, empatizar y poder estructurar una mejor forma de afrontar esta condición, reduciendo la queja y transformándola por herramientas de ayuda.
-No se pretende resolver nuestras vidas, se trata de crear una comunidad
-Escuchar sin minimizar, preferible no dar consejos médicos del estilo “deberías de hacer X”, sustituirlo por “a mi me funcionó”.

I actually went to the doctors about my pain twice this year. The first doctor did blood tests and an x-ray on my back. Completely normal. She basically just put forward that all of it may just be because I am "inactive".

Then I go to this new doctor(my parents suggested it), and explain it all again. And she suggests fibromyalgia. Almost right of the bat, she does. She wants a few more blood tests to recheck some levels to make *sure* those things aren't causing anything, and then she will really look into fibromyalgia(mainly iron and vitamin D).

I'm not even upset. I've finally got a possible answer to why I'm in pain. Admittedly, I'm even kind of happy that she actually put something forward that makes *sense*.

i finally have an appointment to go over a pain management plan in a couple of days for my fibro, and the rheumatologist strongly recommended gabapentin. i had been on gabapentin a few years ago for anxiety but i didn’t find it helped for that reason and stopped it.
what has been your guys experience with it in pain doses? side effects? does it help?
or
is there anything else in particular i should research or ask for?

Okay so I've always had that 'coat hanger' pain thing. It sucks but i manage.

But this is NEXT LEVEL.

Its like it hurts to touch on side of my neck, it hurts in my traps, and the pain spreads up the side of my head, into my face, down my back, and i can barely turn my head.

Its been DAYS. Is this Fibro? (I am diagnosed but I never know if I need to worry about other things or if I'm just flaring).

Pain killers arent working or heating or anything. Any advice???

Posted this on the chronic illness subreddit. Am tired, could use opinions.

I’m currently pursuing a personal injury claim following a road traffic accident in February 2025, for which the third-party insurer has admitted liability.
Since the accident, I’ve been diagnosed with fibromyalgia, alongside worsening chronic pain and psychological symptoms.
My NHS medical records confirm the fibromyalgia diagnosis, and I’ve been referred to the Walton Centre for specialist pain management.
During my second NHS pain psychology appointment, I was told that fibromyalgia is a lifelong condition and that I will have it for the rest of my life.
I’m currently waiting for an independent orthopaedic assessment, followed by a pain specialist assessment arranged through Premex for my personal injury claim.
My question is:
Has anyone been in a similar situation where their NHS specialists confirmed a lifelong condition, and a Premex or other medico-legal pain specialist was subsequently asked to provide a prognosis?
Did the medico-legal specialist agree with the NHS diagnosis and confirm the condition was permanent, or did they give a different prognosis?
I’m particularly interested in experiences involving fibromyalgia developing or worsening after a road traffic accident.
I’m not looking for anyone to predict my compensation. I’m trying to understand how medico-legal specialists approach lifelong conditions and whether they generally accept the findings of NHS specialists.
I’d really appreciate hearing from anyone who has been through something similar.

It seriously hurts all the time! Even when it’s dry and not in a pony tail. Brushing it’s painful, washing it’s painful and the pain definitely gets worse during flare ups. There are spots that are especially sensitive that I can’t even touch without cringing from the pain. Does anyone have ANY ideas or advice? No answer is a bad answer.

Asking for a friend.

So I got the COVID and flu shots same-day first week of September, and yes, I got the post-vaccine flare. It wasn't as bad this year as last year, so that was nice - it only leveled me for one day.

I got the flu anyway, and oh my god it's a motherfucker this year. It probably hit me extra hard because I had just gotten over a cold (read: I had exactly one tired-but-'almost normal' day in between) and food poisoning (yup), but still. It set off the worst flare I've had in years. The beads of water from the shower hurt my skin. The waistband of literally anything I owned hurt my skin. I could barely move. Coughing made me white out because it literally felt like getting stabbed in the temples. I lost my voice. I coughed up so much gunk I choked on it a couple times. I coughed so hard I threw up three times. I had a fever of 102.4. All food was disgusting and I was constantly ravenous and intermittently nauseated. I couldn't sleep because of the pain from wrinkles in the sheets and the hot/cold fever bullshit, I sweat through the sheets, etc. During the day, I oscillated between being wrapped in the heating blanket and weakly thrashing out of it and then rolling myself back into it. I got dizzy every time I sat or stood up. I will spare you the lower GI drama. I kept crying because of how awful it was even though crying hurt. And I'm sure it's the flu because I went to urgent care (masked up, during the least busy time) to make sure I didn't have bronchitis or pneumonia or something we could kill with antibiotics; they did rapid tests for COVID, strep, and flu, and flu was the only positive.

So, yes, if you get the shot, you can still get the flu, because immune systems aren't perfect and they can only make a vaccine for a few of the strains of the flu each year - scientists have to pick which horses to bet on 6mo in advance (that's how long it takes to make the shots) and sometimes one they didn't pick pulls out ahead, or something mutates significantly, etc. BUT getting the shot means the flu tends to hit you less hard if you do get it!!! It makes the biggest difference in terms of severe outcomes, like needing to be hospitalized versus not. I can't be sure it helped me, but I also can't imagine how much more miserable I could've been without it. Given how sick I was, the hospital seems like a very real possibility. I know some people don't want to get the probable flare of the shot if they might dodge the flu without it, but again, holy shit.

Do whatever is best for you, of course, and I'm not about to debate vaccine science with anyone, but ... speaking as a fibro friend, you want that shot

I am looking for advice from anyone who also has trouble with focusing on work. I wake up and have been doing 10 minutes deep focus, 5-10 minute break. It works for 3 sessions and then after that the fatigue takes over and I can only do 1-2 more sessions after that. It’s hard making it to even 20 minutes of deep focus at a time because the fatigue takes over, that is why I only do 10 minutes before a break. After I do the 3 sessions I can just barely think as good anymore. Today I tried a fourth session an hour and thirty minutes after my third session and it ended in my flaring up. I’m not on medication so if there’s anything that could help with this I’d be willing to try. I have only tried duloxetine but the side effects were a bit to handle and I stopped. I just worry if I can only focus this long per day how will I even hold the job for my career

anyone else on the fence with exervise? I started doing short, low impact chair exercises going into seven weeks now and it sort of helps w pain. I find more stamina too. I have been doing it five to seven days a week. Although still experience insomnia.…. weirdly. I hydrate. eat relatively well. try to move in capacity I can. Meditate a little. Go to sleep on schedule. it’s just hilarious I still experience fucking sleep problems.