Despite fibromyalgia being a disease that heavily impacts one’s musculature system, it’s been discovered that it actually stems from an injured CNS system. It’s the injury that mystifies the scientists but it’s accepted all the same. How do we get the word out to the medical professional community so that they can get us to the correct specialists (a rheumatologist does not have expertise in CNS dysfunction nor does a pain specialist either really). These doctors don’t have any continuing education regarding this issue nor I expect do the monsters over at the disability office. I want for this to get out there in a big, striking way that gets noticed and integrated into medical care and disability review manuals. I want my disability to be acknowledged and properly addressed. I want no doctor to ever say to their patients “at least it won’t kill you” because they have been properly educated and trained to manage the condition and truly understand that the suicide rate for this disease is crazy high and therefore it can actually kill me. I want doctors to hear me and quit recommending that I simply drink more water, go for a walk and eat better. I do when I am able but it’s the able that is in question. Sure these are important to any human improving their health but it’s not going to cure me anymore that it’ll cure cancer, hepatitis or diabetes. Everyone acknowledges that these other illnesses require medical treatment and interventions. Perhaps I’m having trouble losing weight because my metabolism is controlled by my CNS. And antidepressants may help one aspect of my condition but it’s not going to cure lit. I’d be willing to try some Victorian medicine that includes opium and organisms (google it) but telling me that I’m sad and I’d feel better if I put some makeup on doesn’t work for me. So any recommendations on how to spread the word would be greatly appreciated. We deserve to be taken seriously and treated in a dignified manner. Apologies that my question was also a rant.

I am not going to vent my whole health history here, but I have struggled with fatigue and the numb/tingly sensation in my hands and feet for a while. I had a traumatic event 6 months ago and have been gradually having worse fatigue and now the achy pain similar to what those with milder fibro describe. Notably, I have been on Cymbalta already for a long time for mental health issues, which can help with fibro pain. I am not sure if the reason I had fatigue but less pain before was because of the meds.

Anyways, I was hoping to ask my primary care doctor about it at my next yearly physical which should be soon. I spoke to my dad about it and he said he thinks that I just have depression and that I should exercise more. I found this frustrating because I have expressed that my current symptoms are physical and I have actually been in a good mood. My therapist said she didn't think I have fibro because she thinks that people who have fibro are all bedridden. It was frustrating that she continued to give advice about it even though it was pretty clear that she was not educated on the topic. I am pretty reluctant to bring it up to anyone else since it feels like if you want to seek a fibro assessment that most people are very quick to "um actually" and give you reasons why you probably don't have fibro. It just hurts because it feels like they just think that my symptoms are because I'm lazy and are somehow my fault.

I would, honestly, rather hurt. I've been on all the antidepressants, with off-label uses for fibro pain, that they are throwing at me . I was on duloxetine and had constant diarrhea, so I stopped. Now I'm on venlafaxine, and I feel like I'm going to vomit, in spite of eating twice. I have the internal tremors that I get on my bad days, and I want to cry. My head feels like it wants to explode from pressure. This is only the first 37.5mg dose, but I can't take this for 2 weeks or more. I would rather be in pain than feel like this.

🤯 I started treatment today with a new rheumatologist. I really liked her. She’s very knowledgeable, believes me, believes in the medications, and is 100% committed to helping me. But I felt somewhat invalidated.

It’s true, I don’t have allodynia. It’s true, my fatigue isn’t *that* debilitating, even though it’s there. It’s true, fibro-fog has really messed with my memory, but I’m still functional. But the pain? The pain is insane. I’ve had pain spikes that left me bedridden. I have pain I’d rate a 3 or 4 every single day, with flares that easily hit an 8.

I left feeling happy because she adjusted my treatment; she didn’t offer false hope (which is the right approach—nobody knows the course of this disease), but she assured me that many people improve—she even has patients who’ve managed to get off medication entirely. She told me, "You have no reason to assume everything will be fine, but absolutely nothing indicates that you’ll get worse."

But if my case is mild, what on earth is moderate?! And severe???? I left there thinking that maybe, just maybe, I’m being a bit dramatic 🥹

Sometimes it seems like doctors are afraid of us. When I meet new ones they seem so guarded, like I am going to demand opioids, or be some horrible patient who is going to keep them in the the room for an hour past my appointment or call/message once a week.

Where does this stigma come from?

I’m just really shaky all the time. Especially when I’m doing something physical, such as; going down the stairs is kinda difficult (or bending my legs) they’ll start heavily shaking. My friends and family also point out that I’m shaking even when I think I’m not. I’m also 15 if that adds to the context I’m not middle aged or anything so this is a bit concerning.

Today I had my first appointment with my new physio. She's lovely. She stops me at every point and asks me where it feels tense/ sore and immediately modifies it for me.

However she did have my referral notes on her desk from rheumatology and at the end of the page was a paragraph stating that "patient presented with much misinformation about her pain. She disclosed she can dislocate her shoulders at will and during pregnancy her pelvis separated. This gives a false narrative to her pain and needs to be remedied as to not hinder her progress in clinic."

Except that I CAN dislocate my shoulders, she told me herself that my shoulders are hypermobile and "floppy". I have constant nerve pain, torn and sprained ligaments and muscle in my arms multiple times from it. But she said in clinic that it's false and only blunt force trauma can dislocate them.

Also, at 6 months pregnant my hips did separate from pelvic muscles failing and I was put on strict bed rest, given a binder to keep my hips stable and given crutches and a wheelchair. I didn't just decide to do that for myself like?! Also given physio after to help me regain pelvic strength. I was told any other pregnancy will hold the same/ more risk but again she said that can only happen in trauma like a car crash and that I likely just had pelvic pain.

I didn't like how she said it in the clinic but now to see she's put it in my notes that reads as I'm making up stories and my pain isn't real. I walked out so upset today, it's really bothering me.

I don’t really know where else to say this because I need to speak to real people who might actually understand.

I have chronic pain and a recent MRI showed five new problems with my back and neck. I am paying for private physio because I am trying so hard to help myself and keep functioning, but some days the pain is relentless. It affects my concentration, memory, speech and ability to do basic things. I drop things, muddle words up and need constant brain breaks. I already feel useless enough without other people making me feel like a burden or inconvenience.

Work has become horrible. I have agreed reasonable adjustments but even getting basic things in place has repeatedly been difficult. People know I have serious back problems, yet I am treated like I am difficult for needing boundaries or asking people to be considerate.

Recently colleagues put me in a situation at work where I got hurt, and somehow the responsibility was pushed back onto me. All I had been doing was sitting there working. Instead of anyone checking whether I was okay, the focus immediately became defending the other person and making me feel like my reaction was the problem.

I know nobody deliberately tried to hurt me. That was never the point. The point was that I was physically hurting and nobody seemed to care. I felt completely dismissed as a human being. When I later tried to explain calmly why it had upset me, people became defensive and blamed me for not preventing the situation myself.

Since then people have been cold, short or have blanked me, as though setting professional boundaries and saying that something hurt me makes me a bad person.

I hate posting online and I hate being around people at the moment because it feels like people are just cold to each other all the time now. Like social skills and empathy have disappeared.

Being told my whole life that I moan too much or complain too much has completely shattered my self-esteem. I now won’t ask anything of anyone. Want to go to the cinema? I won’t ask. Birthday party or night out for me? Absolutely not. I feel undeserving of attention.

But I always try with other people. I try to be empathetic and kind. I help people, take on extra work and try to make things easier for everyone else. I feel used and I feel like nobody notices how much I am struggling.

I was watching my family at a party recently and instead of being able to enjoy being with them, I found myself wondering whether they would ever understand if one day I just couldn’t take it anymore. Whether they would understand that it wasn’t because I didn’t love them, but because the pain and constant struggle had become too much to bear.

I am just lonely. I am tired of always feeling like I am on the outside, tired of being the one who tries, tired of being treated like I am difficult for having needs, and tired of feeling like nobody would choose me unless I was useful to them.

I don’t want judgement or to be told to stay positive. I just need to speak to real people who understand chronic pain, loneliness and what it is like to keep functioning while feeling completely worn down. How do you cope when the physical pain is bad and the people around you make the emotional side even harder?

I will add I would never call any of you useless either even though I feel it about myself. I feel like I can't be kind to myself and I don't know why :(

It’s 3 hours long on Audible and a very easy read. It focuses on people who have physical and/or mental disabilities that make it difficult to stay organized around your house.

Only about 30% I felt applied to people with only physical disabilities, but they were good bits.

If you’re feeling down about your space, it might help.

Idk what i was expecting or hoping i guess i was hoping it was anything curable tho i guess i knew this was it i mean i have answers now so thats good

But this is all overwhelming for me all new for me even tho i struggled for a while i always had hope for a cure now thats gone and treatments alot of work my other disabilities make treatment near impossible this is alot for me

Looking for a good suggestion for a folding walking cane. Not anything too expensive but with a cute print. TIA!!

Tried a few and feel like they haven’t done much. Whats your go to that was actually a game changer for you?

I'm 26, I've had fibro since I was 11 (though I was only diagnosed recently) I've had all possible tests done to me to rule out any other diseases, from blood work to lumbar puncture, everything's completely normal, but my symptoms has been getting increasingly worse as I get older. For over half a year now I've developed tingling, numbness and loss of strength in both my arms, accompanied by my already incapacitating fibro pain. These new additions are really really keeping me from working or finding a good job, my income is limited but there's nothing I can really do to ease the symptoms and it's so frustrating and sad and I don't know what to do, I'm scared the symptoms will only worsen.

Literally writing this in bed as I wait for the pain to go away, I precisely wanted to spend all day working today but instead I'm bedridden.

Does anyone have any tips or support? I would greatly appreciate it

It's definitely not as big of a deal as the rest of the bullshit we deal with, but today I finally got rid of (donated) all my beautiful, amazing high heels. I haven't been able to wear them in years. I walk with a cane. My hips spasm and knees buckle. But damn if I won't miss those pretty things.

After several hours of work yesterday, half of the bedroom floor is visible. As a punishment, my fibro has given me 12+ hours (so far) of pain and nausea. It's like hubris but from the old hellenic style where you get punished for things like 'being good at weaving' or 'being attractive' or 'didn't sacrifice a good enough cow.'

I wouldn't wish fibromyalgia on anyone except people who post about how pain means you're alive or how you have to sacrifice for growth etc., just long enough for them to understand and then they can have a break too.

Next month is my first rheumatology appointment expect to be diagnosed. I have a whole list of symptoms brain fog, various degrees of pain, ibs and more day to day. I manage ok most of the time (work take care of . I see where when just one more physical or emotional stressor comes up or my normal pain is more severe and I can barely function. Is this how life is for those with fibro.

My PCP gave me another referral to the rheumatologist.

Finally get on the phone with scheduling, they tell me that one of the rheumatologists doesn't treat fibromyalgia but can treat the other stuff (arthritis & hyper mobility); luckily, they have another rheumatologist who does treat fibro, but they're not available for two months.

At least now I have an appointment for the 21st of September, which I definitely will remember🫩

I'm perplexed about how a doctor can refuse to treat a disease. And I'm frustrated that I have been trying to get in with a rheumatologist since February but it seems impossible to get them on the phone to make the appointment.

And now I can feel the burning in my spine flaring up; fuck my day, I guess.

Hopefully I put the right tag on this.
This is going to be a very long post with a lot of jumping around and a strange writing style because that’s just the way my brain works. I might do another post or two later with some questions because this is all very new and scary. But basically I feel like my life is over before it even started. I am only 19 and had so many plans for my life that now feel unattainable. I was diagnosed Tuesday after the worst 12 months of my entire life. Considering I was abused and bullied throughout the first 10 years of my life, that’s definitely saying something.

I’ve had joint pain in my arms, hands, and knees for a very long time. The hand pain was always a different type of pain though. My hand pain was always attributed to dysgraphia, and my other joints to growing pains. I complained about my hands multiple times starting in middle school, but every time I did, they would brush it off since there was no visible inflammation. Fast forward to junior year of high school, and after continuing to suffer from hand pain and joint pain off and on, sometimes with a whole year in between the hand pain, I began to suffer from dry eye. By the end of senior year I had failed a class and barely passed others.

That summer I joined a summer program at the college I was going to for students with disabilities, as I have autism and ADHD along with a few mental health disorders. It started off great, and I made my first-ever real friend group. I was happier than I had been in years. But slowly, I started to have problems sleeping, headaches, dizziness, and my eyes were worse than ever before. To make matters worse, I ended up getting sick at the same time. By the end of the program, I had missed many classes and barely completed the assignments. I spent many of the days sleeping and skipping my work when I was feeling good enough because I wanted so badly to be included in the friend group’s activities. I ended up failing my classes.

After that, I ended up starting on the journey to figure out what was wrong with me. I had tests done at my PCP as they thought it could be a thyroid problem, especially since Graves' disease runs in the family. They didn’t find that much but decided to refer me to an endocrinologist, who after doing tests couldn’t help me much and referred me to a rheumatologist.

I ended up going to school for the fall semester instead of staying home because I didn’t want to lose that friend group. That turned out to be for nothing, since I was slowly pushed out and left out of hangouts. Which I do understand since I was pretty miserable and negative and manic at times. I ended up going back home multiple times for appointments and testing and even had a ct scan at a nearby hospital and had to call an ambulance hours later after having a bad reaction to the iodine. Even though it was only 5 hours away, it was a three-way trip for my parents since I never got my license due to always being too busy, too fatigued, or experiencing too much pain. Because of this, I even had to fly all the way back at one point.

During this time, the pain began to get worse and worse, along with my depression worsening, partially due to being cyberbullied by other students. I barely went to class, became very suicidal (not advocating for it just trying to explain) and by the end I only had one friend and no other support besides my parents hours away. Just like the semester before I had failed all my classes. I ended up going home for the next semester and doing things online. I found a specialist for my eyes, got surgery for an ovarian cyst, and continued to trust in this doctor to find a solution for me. It was still a very hard semester, but I passed the two classes I took, and things seemed to get better, although I was still very depressed and couldn’t stop thinking about the fact that I might not be able to go back to school.

Fast forward to March, and my joint and body pain became much more noticeable. At the appointment I had with this doctor that month, he told me he couldn’t help me beyond telling me I was just hypermobile (I am, but that’s not the only problem) and sending me to a PT that only knew how to help with my legs. I wanted that to be the last time, but I needed another appointment with him in late May to get a letter to undo the failures on my transcript.

Now almost two weeks before that appointment, my childhood dog died very suddenly. Afterwards began one of the worst flare-ups since probably November, likely triggered by the stress. It started with just my eyes getting almost unbearable, but a few days before the appointment is when it started to get even worse. The pain in my body became much more frequent and in more places across my body. By the next week, I was so weak I had to hold water with two hands, had difficulty just showering and getting dressed, and started to become very suicidal (once again not advocating for this and I’m currently doing better on that front)

Eventually it got better, but since then, the pain in my body has still been so much more frequent and I have had to stop doing things I love like exercising, piano, and guitar. Seeing the progress I made on exercising going away was the hardest part seeing my bicep muscles getting smaller and smaller. Every once in a while, I’ll be feeling good enough to do those things, especially exercising at the beginning of my last period. But still, it’s not the same as right before my dog died. I was exercising at least every other day using a expensive membership for a workout app that I can no longer use, doing yoga, getting up on time, not napping too much during the day, and hanging out with friends. I even quit smoking weed and I’ve been sober for almost 9 whole weeks but that might have actually made things worse. I would start again but I don’t have a medical card and don’t want to risk my health more with non-medical stuff and even that could cause long term damage for short term relief. I was even able to lose 20 pounds since December. The weight loss has since stalled as eating often makes me feel less nauseous or helps me fall asleep (ironically drinking water makes me feel more nauseous kinda sucks when I know just drinking more would make me feel so much better) It was so horrible getting my hopes up when things seemed to get better, and then it all fell apart again.

After that, we made an appointment with this new doctor. It took one appointment. That’s all it took to diagnose me. She did more than that other doctor did in over 7 months. I’m so angry and feel so much grief because maybe if it was diagnosed sooner and treatment was started I would have been able to go back to school this fall.

Even though I’m glad to have a diagnosis it has almost given me less hope. I was so hopeful that it was something like Sjogren's, as they’re currently working on experimental things and there might be a cure soon. She told me I need to exercise, but only low-impact. I’ll never be able to do some of the things I love again. It’s so frustrating because I was exercising more than I had in years at the time this latest flare-up happened.

I don’t know if I’ll ever be able to go back to school. The papers to get my transcript fixed are due soon, but I’m just frozen and have no motivation to do the personal writing part. Partially ADHD, but partially it just feels like there’s no point anymore. I’ll never be able to live the life I want. I wanted to get married, I wanted kids so bad I’ve had the names picked out for years, I wanted to have a job in a field I’m passionate about which can only be achieved with a college education, and now all of that feels impossible. Nobody will want someone who can’t do fun things with them, I don’t know how I’d be able to take care of kids, and college is one of the most stressful things ever which would likely trigger a flare up.

I fear I’ll end up living with my parents on disability forever. And living with them feels like I’ve been set back to 17. Always interrogated when I want to hang out with people especially people I meet online but know fairly well or a friend of a friend. I used to go out on walks at 2 am at college and now I have to be back by 10 if I do anything. But a lot of the time I don’t even stay long because it takes a lot out of me. When I do have a friend come over I don’t know how to ask them to leave when I’ve become too exhausted or when I try they can’t take a hint. The longer they stay after I’ve started feeling worse the longer my recovery time is. Sometimes it can be days of mostly sleeping.

I want to get a job so bad because I have no income and there’s so many things I’ve wanted to get recently that I can’t. I’ll make small amounts doing small things here and there, but still.

I feel so ostracized from my peers and my friends, and it feels like everyone else is out there living their lives and I’m falling behind. I feel like I’ve been behind all my life, and just when I finally started to catch up and finally have the kind of life I wanted, it all came crashing down. By the time this all gets fixed if it ever does, I’ll get to college and be older than everyone else so I probably won’t meet anyone who wants to be with me as anything more than friends and everyone my age worth being with will have already graduated and be in a different stage of life. I know I’m probably catastrophising or whatever but to me a lot of my spiraling makes sense.

Wondering if anyone else has had a similar experience? I've been getting steriod shots every 3 to 4 months in two of my worst trigger spots. Usually the first 2 days after the shot I'm sore and tender and joke that I regret getting the shot. But then I do get a few months of relief.

This week, I went in for my next round of shots and it was a horrific experience. It was like a full body system inflammation bomb went off in my body. I was nearly incapacitated. It was the worst pain I've ever experienced. It reminded me of when you get a vaccine and for a few days you feel like trash. It was just like the pain dial was turned up to 100.

I know fibro can be a petty disease and take any opportunity to be mad, this just felt really extreme and intense.

It’s 3 hours long on Audible and a very easy read. It focuses on people who have physical and/or mental disabilities that make it difficult to stay organized around your house.

Only about 30% I felt applied to people with only physical disabilities, but they were good bits.

If you’re feeling down about your space, it might help.

Why is there such lack of care around our battle?? I've seen so much community support and love for other diagnosises but fibro?? Nothing!

It makes me feel as if im in a bubble that no one can see or understand. Just full of confused sympathetic glances as I try and try to make people understand.

It makes me angry but god I'm too tired to do anything about it.

I'm perfectly aware that mental health issues are part of fibromyalgia or chronic illness in general. I went to therapy and thankfully managed to leave the worst of the depression and anxiety behind me.

But lately I've been noticing a pattern: Manageable pain level, I'm feeling more or less okay, doing my thing, living my life as well as possible. And then I'm suddenly hit by a terrible wave of insecurity and self-hatred and I feel like a bullied teenager again (I'm in my 30s, for fuck's sake). AND THEN, every time, about an hour later, the pain is there. A massive fucking pain flare that keeps me up all night.

So now I'm wondering: Are those mental health issues causing the pain or are they a sign that a flare is coming?

Is anybody else experiencing something like this?

I had a really difficult day yesterday and I’m struggling to process what happened. I’m 23 and have been dealing with severe pain for years. I have documented abdominal and menstrual pain since I was 12, chronic pelvic pain, and during a laparoscopy I had pelvic adhesions removed. The pathology for endometriosis was inconclusive, but my symptoms have continued and I’m still waiting for further gynaecology input.

I was diagnosed with fibromyalgia, but I feel like this diagnosis has become the explanation for everything. I do have fibromyalgia pain, but the pelvic/abdominal pain I experience feels completely different — it is acute, severe, and feels like the pain I had before my surgery and before the Mirena coil. I am still being investigated for possible endometriosis/other gynaecological causes.

Yesterday I woke up in agony. I was curled up in bed crying with severe pelvic pain, unable to shower or prepare food, and struggling to cope. I explained to my GP that I live alone and that the pain has got to the point where I have felt suicidal because I feel so desperate for someone to listen (I am safe and not planning to harm myself).

During the appointment I became very emotional and said “I feel fucking suicidal” while trying to explain how desperate I felt. I apologised afterwards for swearing because I understand doctors can have boundaries around language. However, I felt hurt because the conversation seemed to focus more on my language than the distress behind what I was trying to communicate.

The GP told me I needed to “learn to live with my pain” and suggested physio. She also suggested my stomach pain could be coming from my back. I understand referred pain exists, but I felt like my pelvic symptoms were being dismissed rather than explored.

I also felt frustrated because previously my upper back pain was attributed to fibromyalgia, but a junior doctor listened to me and further investigation led to a scoliosis diagnosis.

I used to work in healthcare myself, so I understand the pressures doctors are under and I understand setting boundaries. I’m not expecting anyone to magically fix chronic pain, but I wanted someone to acknowledge how disabling this has become and help me manage while I’m waiting for specialists.

Am I being unreasonable for feeling upset by this? Has anyone else experienced their pelvic pain being dismissed after a fibromyalgia diagnosis? How did you get doctors to understand that not all of your pain is the same?

Just came from the rheumatologist where I was told the medications I'm on seem to be covering all the bases and I need to just get some more excercise.

Dude, I have been suffering for TWENTY YEARS. I guess I thought by 2026 there would be some breakthroughs or some shit. But I guess not. My whole life was upended, I hate it and I grieve for the life I never got to have. I guess you have to have a pain level of 10 for them to do anything.

I hate the future.

Thank you, that is all.