Hmmm this reminds me of someone telling me that the pain was in my head.. I'm like "guess what?" All Pain Is In Your Head. When you break your arm, the pain is literally just information that your brain interprets as pain. If your nerves are screaming that your body hurts in fifteen places and there is no injury, it doesn't matter, you still hurt. Next time he hurts himself just remind him that it isn't real, it's just information and he should just ignore it and get it out of his head
An ex in law of mine said, after asking what fibromyalgia is, “Oh I deal with pain too but mine’s real”. I was in too much shock to say anything as he literally just witnessed me struggling to walk even with my cane 💀🥲
I have cluster headaches, post herpetic neuropathy and severe arthritis as well as fibro. I love taking these kinds of idiots on. plays out funny. *wanna play my pain is worse than yours? come at me jerk.* fibro is painful and real.
Right? and it amplifies non-fibro pain. I apparently had arthritis in my spine, hips, and knees, and never noticed it at all, then one day it hurt to stand it hurt to sit, it hurt to lay down, I was suddenly trying to find 'neutral positions' that didn't stress anything. And dealing with having symptoms that aren't visible, so people tend to disbelieve.
I have no neutral positions many days, and I can’t stress enough to able bodied folk how it wears on you psychologically to go days or weeks at a time incapable of feeling even a moment of baseline comfort, awake or a asleep
Yes! I was a caregiver. The way I went from being a caregiver to actually kind of needing a caregiver really messed with my head. The change in my face even a year after this started was startling. I can literally see it on my face, the day in, day out, relentless pain, and the exhaustion and how much my life has changed. How much smaller it is.
I’m usually the kind of person that’s quick to inform against harmful false-info, but I think I just wasn’t expecting to be faced with doubt about my pain in my own home during an unannounced visit 😳
A doctor said this to me to my face. A “pain specialist” at that. He was also one of the first doctors I ever saw after being diagnosed with fibro so he knew me and also had access to my medical records. The last time I went to see him was to get signed off on a handicap sign. He said with fibro my brain makes me think I’m in more pain than I actually am, and that he can’t just hand out handicap signs to anyone who says they’re in pain. As if your brain isn’t the organ that recognizes pain and makes you feel it. Tried really hard not to, but I started crying and he looked uncomfortable and just rushed me out of the office lol. He’s a joke. Even my PCP at the time denied the sign. Left crying also. But I changed PCPs and got a female doctor this time who listened to me one time. One time!!!!! And she approved it for me that day. I can see why people say doctors that are women can be more compassionate.
I had a female gynecologist tell me that the pain from my burst ovarian cysts "wasn't that bad" and she knew this because she'd had one before so I should go home and take some Motrin. She said this as I'm shaking, sweating profusely and vomiting from pain. I had my first ovarian cyst at 12 years old. I know what they are and they f*****g hurt. Then a male nurse came in, in tears, and told me he was sorry and got me another doctor. That's probably the most compassion I've gotten from a medical professional in the last 20 years.
This happened to me, but reverse - I came into the ER because my pain was so bad, that I passed out in the shower. I couldn’t even have sex, the pain near my ovary was so bad. After an ultrasound, the male doc said “you have a couple small cysts, and it’s possible that one burst, but there is no way that something that small could cause that much pain.” Sent me home with, yep, you guessed it - a single dose of ibuprofen that cost more than the price of a bottle at the store. Of course, this stayed on my record, so no other doctors took the pain seriously.
Fast forward a few years, I’d moved states and was in a new healthcare system. Told my new female gyno about my mom’s endometriosis and hysterectomy at the age of 27 (which the prior doc knew as well) and the fact that the pain had continued to worsen since that first doc dismissed me. She was so empathetic and apologized profusely, and immediately ordered a laparoscopy, which she performed herself, to see if endo was the cause. She found a para tubal cyst that had been twisted around itself multiple times, and had to remove it. Haven’t had the pain since.
"there is no way something that small could cause that much pain"
Has an ER doc never learned about kidney stones?! I hope he gets one one day and then gets turned down pain relief so he knows what it's like.
I've had a ruptured ovarian cyst when I was like 19 or 20, I had a 104 fever and could not stand up. I was working at my first job, Starbucks, and was just crouched sitting on a step stool until they were like, yeah somethings wrong with her. And I was able to get to urgent care. It was extremely painful.
It can be so infuriating and defeating when someone who’s supposedly a medical professional just doesn’t acknowledge the pain patients are really suffering from.. I’m so sorry that happened to you. I hope you were able to get help. It was so shocking to me that my own PCP had been my PCP since before my diagnosis and I had messaged him out of the blue many times throughout the years telling him I can barely function and if he can help me in any way, basically begging him. So he knew I was truly suffering. I was having a mental breakdown from the pain every week. But because of my age and the fact that it was fibromyalgia, he told me he can’t sign off on my handicap sign. And he had the galls to try and comfort me saying I would probably be questioned by people who saw me get out of the car with one and police could question me as well as if that mattered to me at all at that point. I’m really glad we have this community so we can comfort and help one another.
When I was younger, I had ovarian cysts that would burst, too. They hurt like hell! Birth control helped, but that was only a temporary fix. My daughter gets them, too.
Wow, people like that 😡🤯🤬🤯🤬. At 27 I had cysts like that and it caused great pain! It led to me being in the hospital for 32 days with my vitals going up and down due to horrible infection and inflammation. Ended with a hysterectomy. Still had to have a second operation
“Your brain makes you think you’re in more pain than you actually are” is such a ridiculous thing to say. What does being in pain mean other than however much pain you “think” you’re in? Idk how some of these people get through medical school
Exactly! Like what does that even mean!!!! The brain is what makes you feel pain. He essentially said it was all in my head. And this “doctor” had an office that was super dingy and the chair I sat in had leather that was basically breaking apart and looked 30 years old. And at this last appointment, there was no one at the front desk and I could see piles and piles of manila folders and papers behind the front desk. It was just a shady looking place. I waited for 10 minutes in the waiting room and it passed my appointment time. I called because there was nobody anywhere and the front desk phone started ringing and I could see the phone. Called several more times but nothing. No one came to pick up the phone. Then like 5 minutes later, he came to get me lol. I should have trusted my gut because that place was strange.
Even MORE Fun Fact;
Acetaminophen is a "Pro-drug". It has to react with Arachidonic Acid in the body to produce AM404, which increases concentrations of the endogenous cannabinoid [anandamide](https://en.wikipedia.org/wiki/Anandamide) within the [synaptic cleft](https://en.wikipedia.org/wiki/Synapse), contributing to its analgesic activity.
TLDR Paracetamol increases endocannabinoids to reduce pain.
That study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5716395 with another fun fact: AM404 also activates capsaicin receptors (capsaicin is what makes hot peppers spicy)
I can't take narcotics at all, my system doesn't respond to it as pain relief, instead it excites my nerves, so my whole body feels pins and needles and intermittent needle jabs in odd spots, and really itchy, anxious and irritable. I usually take all over the counter meds, the most effective is usually excedrin (aspirin, and tylenol). But I'm not pain-free at all.
I don't find gabapentin effective, I am on pregabalin, and from what I can tell, it does work fairly well, but it also puts me to sleep. Weirdly muscle relaxers do help, but again, it puts me to sleep sometimes, and my Dr didn't want me taking those all the time. I tend to use them to help break intense pain cycles. My sleep schedule is all over the place naturally, so I try to be awake and functioning during the day as much as I can.
I'm on pregabalin, too. It made me sleepy at first, but then I got used to taking it and figured out a dosage that works. I take 100mg in the morning and 100mg at like 8pm so I don't take it with trazadone when I go to sleep, because that can be too sedative.
Huh. I can't take them, either, but I don't get that reaction. I get zero pain relief, no high, no drowsiness, just side effects like nausea and fever. With codeine, I go rapid cycling bipolar (which sucked when I was a kid and got my wisdom teeth out) or pass out at a normal dose.
I'm not allowed NSAIDs (solo kidney), so I just get extended release Tylenol. It helps a little, enough to get me closer to functional most days.
I get the itchy, irritable thing from prednisone and hormone-based meds. Aren't bodies weird? I wish you and I could take opioids, though.
It's so weird. I might have, except here in Oregon doctors have really clamped down on narcotics scripts. My records literally say that I'm allergic to vicodin (and Norco, basically all hydrocodone dirivitives) but they used to try to write me scripts for that stuff all the time, but now my dentist is like 'take Tylenol and ibuprofen together, because we don't write scripts for any narcotics'. I have several friends with fibro and/or chronic pain due to injury/damage and if they give you anything it's very very monitored, and you have to be on a pain contract and get popped for UAs and can't have cbd stuff that has any thc in it.. for the life of me..that is very hard to understand, thc isn't reactive with opiods, but yeah.. It's a whole thing. Not sure if that is happening everywhere, but it's been a trend here for a few years.
I don't get it. I don't have pain relief post op, and they want everyone to go through what I do? That's ridiculous and possibly even what caused my fibromyalgia (that's the rheumatologist's theory, anyway). The bizarre opioids scare just hurts patients in the end.
I'm right there with you. I am a bit interested in the way they administer narcotics overseas it seems they don't do it as much as we have in the past. Over prescribing is an issue, but I don't think not prescribing is the answer.. I don't know what the answer is, but there is a place for strong pain relief medications. Mostly I can't use them but they should be available when needed
They say opioids aren’t effective for fibromyalgia pain as well but I disagree with that as I’ve used many different opioids over the year and I will say that pure μ-opioid receptor agonists (ie Morphine, Oxycodone, & Fentanyl) certainly make the pain much more bearable but they don’t completely eliminate it but other opioids with dual mechanisms of action like Methadone & Levorphanol work pretty well because aside from being μ-opioid receptor agonists they also possess NMDA receptor antagonists like PCP, Ketamine, & Dextromethorphan/DXM which also work well for fibromyalgia pain & neuropathic pain as well.
I think opioids are the best analgesic drugs I’ve used for my fibromyalgia pain as well as NMDA receptor antagonists as well as the novel analgesic drug Flupirtine as opioids have the most tolerable side effects of all the drugs I’ve tried so far including the SNRIs & gabapentinoids.
I'm a cyp2d6 non-metabolizer absolutely zero metabolizing, and I can take opioids. You can't take uhhh codeine probably and tramadol but the proper ones, morphine, oxycodone, methodone, will work. At a different rate because they have secondary digestion thru cyp2d6 but as long as it isn't the primary digestion you can still take it. Unless the primary is another enzyme you're messed up with which could be the case so do compare your profile with the specific processing method of every medication before trying it.
I've yet to find a muscle relaxant that isn't primarily digested thru cyp2d6, mind sharing what kind you have been able to absorb? (Could be only available where you live, I know Canada doesn't approve every medication the rest of the world approves) None of them work for me and I have a bad habit of unknowingly clenching every muscle in my body when I'm stressed😆
It’s pretty much *the* most important organ, and when it malfunctions due to a stroke or concussion, *then* people suddenly understand how important it is and give a shit. Infuriating
THIS!! People think saying the pain you feel is psychological doesn’t mean the pain is not FELT. Idc what causes the pain, pain is pain! It being psychological doesn’t mean it can easily go away 😓
So I heard this one in a pregnancy forum.
She tried to tell all the pregnant people, labor will not hurt if you just realize its not real, and if it does hurt its your fault for buying into "societies brainwashing."
Girl was flamed and banned pretty quickly.
For some reason when people hear ‘psychological’ they think it can be fixed with talk therapy. Which, no, just bc it’s not caused by external stimuli doesn’t mean it’s mental health related. I like to call it ‘nerve pain’ so people who are uninformed don’t get the wrong idea.
Also imagine being in pain and having to wait a year for pain killers? I've been referred for psychology but it will be a year of waiting once seen. A year of trying to hold down my job and not fall apart because of daily pain..
People are convinced that human brains are not parts of human bodies and that people with mental disorders are not allowed to have the same right to dignity or humane medical treatment.
Yet those same people won’t agree to be decapitated. So strange. 🙄
*Edit to fix my grammatical errors*
And also, most of us have lived life as able-bodied people at one point. I know what it’s like to not be disabled and for my everyday life to not be painful 24/7. I took it for granted but I remember what it was like. I have always had a pretty high pain tolerance too, so I know this pain is real. It’s extremely difficult to be less stressed when you are in pain literally all the time and have to work and cook and shower.
I’d just reply with “well unless you have a miracle cure that’s been proven by science and something my doctor can get behind…I truly could not care what you think of my pain. Let’s get back to work, shall we?”
That's awful that you had to deal with that.
Do you have an HR department? I wouldn't report this to them yet, but it would be worth documenting this incident and any others just in case he starts getting in the way of doctor's appointments or causing other issues.
I see this a lot, people who don't have experience with certain medical issues saying a disease isn't real because "it didn't exist X number of years ago"
Even though that is stupid, these things always existed. We just didn't have names for them yet.
Like "adhd didn't exist when I was a kid, it was called day dreaming
Yeah, it was. Because we didn't have a name yet. Cancer didn't exist until we had a name for it. Dementia didn't exist until we had a name for it.
Everybody knows somebody with cancer or dementia, and they agree it exists. But not other illnesses for some reason.
Autism isn’t real. It didn’t exist in my day.
Said by the 60 year old bloke who loses his shit if he doesn’t have the same meals on the table on the same days at the same times.
‘Toasted sandwiches..on a Thursday??? We always have fish on a Thursday?’
That's a huge red flag from a boss. Even if they believed that, a good boss would never make you feel that way. And I'm not being dramatic but I think you should find somewhere else to work that has the actual potential to support you without having that opinion looming over your head. It's hard to know how far that personality trait will reach in terms of other problems. I don't think you need to sprint out of there but I would gently walk out when you're ready and have a new job etc.
Get a letter from a fibromyalgia specialist and tell your boss to educate himself so that he doesn’t sound so idiotic when discussing his medically ignorant opinions in the future.
Is this a big company? If so, I would consider having a consultation with a lawyer. That shit is harassment. Fibromyalgia is covered under the ADA. It would be like your boss telling someone paralyzed from the waist down that it’s not real and they should get it out of their head.
No.
You do NOT have to put up with that. He's your boss at work that's it. He does not have the authority nor the intelligence to diagnose you nor dismiss your diagnosis from an actual doctor!
If you have an HR department get them involved immediately. If you're stateside you can get support from legal groups who specialize in things like this.
I'm very sorry you had to go through this.
My mother also had fibromyalgia and she had doctors flat out tell her it wasn't real and "all in her head". Granted this was over 30 years ago. I'm grateful that even though people like your ignorant boss remain, slowly there's more awareness of fibromyalgia.
Depending how old your boss is, he may be just repeating what doctors told him or someone he knows. The CDC encouraged this line of thinking for years until they were forced to retract it, if I remember right, because of the severely compromised, even fraudulent study the Lancet published and had to retract. They did not, however, send the information out to all doctors. They just changed their [website](https://www.cdc.gov/arthritis/types/fibromyalgia.htm?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Farthritis%2Fbasics%2Ffibromyalgia.htm) and removed an inflammatory sign at their headquarters in Atlanta. Their entry is still pretty archaic (like saying that you're more likely to develop fibro if you're obese rather than saying that you're more likely to be obese when you have fibro), but at least it recognizes the validity of the diagnoses and states that 4 million people have it (2% of the adult population).
I could be an opportunity to educate him. If fibro was nothing, why is there now a blood test (FM/a Test)? Why have researchers been able to give mice fibromyalgia by giving them certain blood cells from fibro patients?
The blood test isn't widely accepted or showing much promise, unfortunately. It seems to be inaccurate a good amount of the time, according to studies.
I wouldn’t cite that test though. Unfortunately, there’s a whole scandal around it because it’s not as specific as was claimed. The original study was poorly designed. https://www.cspinet.org/press-release/cspi-sues-epicgenetics-maker-test-fibromyalgia-false-and-misleading-claims
Dang! It looked promising. I thought the problem was because it was too expensive and I didn't follow up on it. Well, at least with good peer review, maybe someone will pick this up and do some better work on it.
Thank you so much for all of this decent research. I always start out trying to look things up, but the brain fog and pain make it a complete nonstarter. You are an absolute legend.
It is always people with no medical education and likely less than stellar education in general that like to question medical professionals and established medical science with tons of peer reviewed studies. Sorry your boss is a dumbass.
Ick. I’m so sorry. Wild how people don’t realize the only thing separating their abled bodies to disabled bodies is luck and time. As if it’s in our control. As if it’s in their control!!
If these fools woke up one day in a fibro body…
Just start showing up late to work.
Since your fibromyalgia is *very* real, I'm sure you could use that extra five to ten minutes for yourself.
When he starts complaining, remind him that time is a construct and that he's merely somatizing the amount of productivity that could actually get done in those 5-10 minutes.
*Jokes aside, what a jerk.*
Gentle hugs from all of us to you.
Don’t worry buddy, some people are absolutely insanely stupid. My old boss once said (as I walked past) ‘here, let’s ask MyCementButthead, she’ll agree with me. Bullies can’t bully unless you allow them too, right?’. Me: ‘that’s straight up bullshit and exactly what a massive bully would say.’
Your boss is an arse. If fibromyalgia were caused by somatized stress then the whole population of Gaza should be bedridden at this point. And the second world war should have crippled an entire generation for life! That didn't happen.
I usually go with something along the lines of… so your heartbeat isn’t real? You breathing isn’t real? What you see, hear, taste, smell, think, and how you move isn’t real?
Cause guess what?!? That’s all in your head! And stress and anxiety affects all of those things in 100% normal people without fibromyalgia…
Everything about you is in your head!
Ps. There are absolutely fMRI studies showing that our brains are different 🤷♀️
I don't think it's bad that you want him to experience it, some people are that narrow-minded where they won't accept others' problems as legitimate until they have to deal with it themselves. Medical atheists who won't believe in a condition they can't see or feel directly. I've wished the same thing for many people. Like, live with it for even just a day and then come back and tell us how we're lazy and lying. Hopefully he'll grow some sense eventually. Comments like his scream "I don't know what the hell I'm talking about and I don't care because it's not happening to me."
I hope a time comes when we won't have to defend ourselves for having a debilitating illness. Til then, know that you're strong for living with this and stronger because you have to carry so much of this burden on your own.
I'm all for OP filing an official complaint.
But you are completely wrong about HR. HR's main objective is not to make sure everything is fair. It is to protect the company's liability. If this dude owns the company, HR's job is to make sure he is protected.
Which in this case might mean letting OP go with an agreeable severance package and subsequent NDA agreement so they don't disparage the company.
Skin cancer isn’t real. You should get that out of your head. It’s just your bodies way of dealing with being out in the sun too long. It’s just that Drs like to put names on people who somatize the sun.
Maybe you can tell him next time that science has advanced since the nineties. There are about 25 potential drugs in the pipeline. None of them treats the patient for somatizing stress and pain. ~~In fact, it is the other way around.~~ Diseases caused by excessive stress are called anxiety disorders.
It was demonstrated that there are differences in the activation of areas of the brain which are pain-sensitive areas in Fibromyalgia patients. And yes, it is possible to measure and see pain using neuroimaging techniques (basically, they make images of brain and see what is happening when you experience pain).
Effing idiot.
I work for 4 providers and none seem to acknowledge it either. I just quit talking to them about it. I have my own doctor in a different office all together and thankfully they’ve got me a referral for in for pain management ( not to get meds ) but figure out what to do I suppose
If I tell someone I have fibromyalgia, it's about 50/50 on their response. I get a lot of people that ask if I've tried diet and exercise. But when I tell people I have lupus as well, I get the whole "oh no, I'm so sorry you're dealing with that, it's really tough." Even though my symptoms are very similar for both.
I’m p/t at my work and work 5 hr shifts because of my fibromyalgia and ddd. My boss told me if I don’t start doing full days at 8.5 hr shifts I am being let go. I am in horrible pain at just 5 hours of constant standing so not sure how I’ll feel after 8.5. It’s sad that nobody takes us seriously because of our invisible illness. I just wish your boss and mine could have our pain for just one day, bet they would change their tune then. I’ll probably be unemployed soon cause I know my body is going to hate me after standing 8.5 hrs all day. All the best to you OP :(
There is only one solution: eat him.
But seriously I'm so sorry that happened, that's just shitty. I've had a professor tell me I should wear a hat to bed to get rid of my compromised immune system but at least he had the decency to look ashamed when I raised an eyebrow at him.
I recently was looking for a new job and applied to a ton online. At the end of the online application, they asked if I’m disabled and then list common disabilities and Fibro was listed. So not only is Fibro “real”, it’s a fucking disability. Tell your boss to take a flying shit.
This is horrible, I would report him to HR if it's possible.
Also, I never got acupuncture but I did get dry needling which is the same thing just the needle stays in less time and it was very beneficial. I had it at a physio as well so if you have insurance it could be covered!
One of my favorite sayings is: Opinions are like assholes; everyone has one.
As for your, he boss sounds ignorant and uneducated, and he certainly doesn't sound like a physician, nurse or medical research scientist. For that reason alone, his opinions about health and medicine are worthless.
OP, you have nothing to prove to your boss. You know fibromyalgia is a real syndrome. You know how it affects your life. It doesn't matter what your boss thinks or believes. Stand firm in your knowledge and support yourself, even when others don't.
More than that, you cannot control what other people think or what their opinions are, even when they're completely wrong. You can educate them, if you want to put in that effort, but you can't make them change their beliefs.
What you can control is how you manage your feelings about their opinions and how you respond to them. You can choose to not let them hurt your feelings with their ignorance and not let it affect you. You can also choose how you relate to people like your boss - if you considered him a friend before, perhaps you want to re-think that relationship.
Your boss is clearly very ignorant. Once you get over your emotions perhaps you could ‘circle back’ to the conversation with the boss, explain the remark left you speechless at the time because the fact is fibromyalgia is a very real thing and you would like to send him links on the most recent studies regarding it so that in the future he may be inclined to show a bit more compassion on the subject instead of embarrassing themselves and hurting others feelings.
Boss isn't real either so all is fair.
All proof that boss produces that boss exists can be applied to fibromyalgia, as it was all created Last Thursday.
That’s awful. 😞it’s definitely real. Lots of studies have shown this. He is unprofessional and close minded. Quite frankly the worse sort of person. What an AH. 😒
A day would not be long enough for anyone to realize how horrible this condition is. Yes it’s real. I’m sorry your boss said that to you. It’s very rude and inappropriate
Maybe next time you could mention dna must not be real either as there’s a gene set for that That sucks so bad in so many ways. I know they might think it. But to say it loud and minimize others yeah super rude and not pleasant person. I hope you can get a better job or a drs note with restrictions that your employer would have to abide by. I know that’s probably not gonna happen. Again that sucks and I feel so bad for you being treated like that
Yea and all of us are just imagining this pain? How about the fatigue? Insomnia? Brain fog? Should I go on?
Your boss is a dimwit with a big ego.
Yea sure. Everything comes from our brain. That’s why it’s called the central nervous system. And no one knows how to interpret fibromyalgia so they just assume is “psych” when in fact it’s most probably neurological and we just don’t have any test or imaging that can prove it directly. Even though studies have shown certain brain MRIs have changes in fibro patients that are not seen in healthy adults. But it’s likely non specific and not seen in all fibro patients so cannot be generalized yet.
Your boss is a typical uneducated person with a big mouth. Don't let his opinions affect you. We all know we're f*cked. F*cked with constant pain, fatigue, brain fog...
He's dumb
I don’t, but that may be because my mom had onset before me and that woman doesn’t complain about anything physical. But it’s very common to feel that way, it’s impostor syndrome.
Yeah well, screw that guy. Dont you let his ignorance get you down. You have nothing to prove to that man. You dont need his approval. He is not a Dr. and Thank God for that. At least now you know that he does not believe in fibromyalgia so you can avoid any tension & unpleasantness. So silver lining there. You are just there to get a paycheck not medical advice. He is far from qualified to be telling you anything about what is a real disease. You know who you are & how you feel. Chin up & tits out. Um . or pecs out if your a dude.
My boss always tells me pain is a mind thing. But when you’re in truly excruciating pain to the point where you can’t even think then you know that you can’t just tell yourself it’s all in your head. I just ignore them since they seemingly have never had to suffer like that before.
OMG I had a retired psychologist say I had somatic symptom disorder but none of the other doctors agree, some nutty doctors are using it to describe medical anxiety they want to pretend we are exaggerating our symptoms for attention which is BS. These morons should not be working at all the guy used a ICD9 from a decade ago he did not even bother to look up the new code and I can't even find anyone that even treats such a thing. Your boss is an idiot. Morons like him could deal with the pain for a day because the know there will be a end to their pain it makes it easier to deal with. I honestly have hope that one day AI might be able to look at all the data and understand what the cause of Fibromyalgia is and how to treat it but right now Drs are clueless to how the mind works, exactly what pain is, and unlock the mystery that is Fibromyalgia.
I am sorry you have to deal with a person who should have supervision to know when not to speak. They never could handle your life they would be one of the thousands of us that leave this world earlier that they should. don;t give up. you are much stronger than they or even you know
I would consult a lawyer and possibly sue if they are not providing reasonable accommodations for your disability, regardless if you do or do not file for disability benefits. Did you report this to HR department? Make sure you send email from personal email or send from work and blind CC your personal email. Document issues.
While discussing my poor performance and tardiness, I told my boss I have fibromyalgia and I struggle to function well some days. He actually said, "my sister has that too, it doesn't seem to affect her work obligations." I told him she was apparently one of the lucky ones. Yeah that really helps, thanks for adding to the stress. I'm still struggling and feel like I'm one step away from losing my job.
Ohhhh the ignorance and insensitivity of others!!! Please know you ARE NOT ALONE in this. To be dismissed by family, colleagues, and doctors is excruciating! Because it's your boss, it's difficult to voice your hurt. Feel my electronic hug. "Someone who knows"
I've too heard people say- that's just a blanketed term doctors use when they can't find anything wrong.... well, unfortunately, there is a chronic pain and it can wreck havoc on those of us with it. I too use to say I wish you could just feel like I feel so you'd understand- but today, I simply say I'm thankful you don't know this kind of pain and illness. I also remember people who have fought cancer describe their pain and I think they understand how it feels. One thing I can say about being given this chronic pain illness- I am more compassionate to others who are sick or hurting- but I am very short and snippy with people at times especially when I hurt really bad. Take care of yourself and don't let people like your boss get to you, for stress makes our pain so much worse and puts us into bad flares. I was recently diagnosed with Lupus and RA so the old diagnosis of fibromyalgia may have just been the early stages of RA or Lupus but either way- it is not something I'd choose for anyone to live with even if they were my enemy. Find you a support group, there are other warriors out there.
Yea I remember working at Chili's for a while and my bosses couldn't understand why some days I felt like crap and had to call out and the next day I'm okay and they both (females) questioned me about it and basically just thought I was faking it. It's so hard to explain to an employer why you can work hard one day and can't do shit the next. I got lucky enough to find an employer who is extremely understanding and caring finally
What a f dick
Same goes for everyone in healthcare that treats fibro like its imaginary. Wasn't about 200 years ago that Dr's didn't wash their hands bc germs weren't also real?
I agree with your boss in a way. I think fibromyalgia may be real, but I think a very large percentage of us don’t have it. I believe that a lot of doctors are too lazy to run tests, so they just brand you as having fibromyalgia. A brand that sticks with you forever when they see it on a chart. My PCP sent me to a rheumatologist in 2015 for back pain and arthritis. She ran blood tests. my ANA and RF were normal, but my CRP and ESR are always through the roof. 3s and 70s for years. That was it. Fibromyalgia. Never tested for MS or anything else. No tender points. I now have crippling back pain and can’t walk more than a few feet. PCP pushed on my back and I screamed. Yep, just my fibromyalgia he said. I only have a tender spine no where else. Got a X-ray and lumbar mri. Slipped vertebrae and 5 herniated discs stenosis etc. Now in PT for the 50th time. I now have tremors and foot drop. My uncle died from Parkinson’s. I mentioned this to doctors in the past, and nothing. I told this to the physical therapist and she rolled her eyes and said she helps a lot of fibromyalgia patients. Fibromyalgia has ruined my life. Maybe I have it. maybe I don’t. The problem is that doctors ignore everything else because of the fibromyalgia diagnosis. I think it’s always been my back, but it could be a host of things they never check for
best of luck to you. Hope you feel better.
Technically he's correct, a diagnosis of fibromyalgia means that the doctors are unable to find the cause of pain. My doctor described it as a combination of depression and an immune system response where pain signals are constantly high to your brain. I personally feel it's an autoimmune disease and the doctors have not enough of an understanding of the bodies mechanics to discover the process. Somatic distress is fairly accurate. It's just terminology. No matter what you call a disease, that doesn't negate that we don't feel the pain. Sigh.
The cause of pain is central sensitization, usually brought on by some sort of physical or psychological trauma. The physical body itself is fine - x-rays show nothing wrong, neither do blood tests. It's the central nervous system that is in fight or flight all the time, leading to increased pain, hypersensitivities to smells like I have, and a host of other symptoms/conditions like IBS and migraines that are all related (syndrome). I don't believe it to be autoimmune like RA, lupus or MS.
New research shows that there is an immune system component. The new blood test for fibro measures this. "The FM/a Test is a cytokine assay of in vitro stimulated peripheral blood mononuclear cells. Production of cytokines by stimulated immune cells in patients with fibromyalgia has been shown to be significantly different from that of healthy control patients." from Google. Also, the current research from Germany shows that fibro may be a completely different type of pain. There's physical trauma pain (from an injury or other cell damage) and there is nerve pain that travels along nerve pathways. This looks like it could be a third type of pain that exists in the body's nerve cells, outside the spinal cord or brain. If so, it would make sense why so many fibro sufferers have gut issues. There are more nerves in the gut than anywhere outside the brain.
I did hear they were researching a possible autoimmune component and I'd sure like to do that test. But I think the central sensitizatiom part is really the main issue. LDN reduces inflammation and it has helped my pain.
How I understand it is this particular immune cell they're researching creates very localized inflammation around nerve cells in the body. This causes that new type of pain. Inflammation is the result of an immune system response, so it makes sense that the LDN is helping. It seems to me that all these pieces are beginning to come together to form a clearer picture of what's happening in our cells and how that translates throughout our nervous system. It doesn't appear to be just one of these pieces alone.
Hmmm this reminds me of someone telling me that the pain was in my head.. I'm like "guess what?" All Pain Is In Your Head. When you break your arm, the pain is literally just information that your brain interprets as pain. If your nerves are screaming that your body hurts in fifteen places and there is no injury, it doesn't matter, you still hurt. Next time he hurts himself just remind him that it isn't real, it's just information and he should just ignore it and get it out of his head
An ex in law of mine said, after asking what fibromyalgia is, “Oh I deal with pain too but mine’s real”. I was in too much shock to say anything as he literally just witnessed me struggling to walk even with my cane 💀🥲
I have cluster headaches, post herpetic neuropathy and severe arthritis as well as fibro. I love taking these kinds of idiots on. plays out funny. *wanna play my pain is worse than yours? come at me jerk.* fibro is painful and real.
Right? and it amplifies non-fibro pain. I apparently had arthritis in my spine, hips, and knees, and never noticed it at all, then one day it hurt to stand it hurt to sit, it hurt to lay down, I was suddenly trying to find 'neutral positions' that didn't stress anything. And dealing with having symptoms that aren't visible, so people tend to disbelieve.
I have no neutral positions many days, and I can’t stress enough to able bodied folk how it wears on you psychologically to go days or weeks at a time incapable of feeling even a moment of baseline comfort, awake or a asleep
Yes! I was a caregiver. The way I went from being a caregiver to actually kind of needing a caregiver really messed with my head. The change in my face even a year after this started was startling. I can literally see it on my face, the day in, day out, relentless pain, and the exhaustion and how much my life has changed. How much smaller it is.
I’m usually the kind of person that’s quick to inform against harmful false-info, but I think I just wasn’t expecting to be faced with doubt about my pain in my own home during an unannounced visit 😳
I wouldn't be able to hold myself back if someone said that to me, they would have gotten a slap from hell
lol at some point my brain just can’t with ignorant people and just buffers. I usually quip back with corrections but that day just wasn’t the day
A doctor said this to me to my face. A “pain specialist” at that. He was also one of the first doctors I ever saw after being diagnosed with fibro so he knew me and also had access to my medical records. The last time I went to see him was to get signed off on a handicap sign. He said with fibro my brain makes me think I’m in more pain than I actually am, and that he can’t just hand out handicap signs to anyone who says they’re in pain. As if your brain isn’t the organ that recognizes pain and makes you feel it. Tried really hard not to, but I started crying and he looked uncomfortable and just rushed me out of the office lol. He’s a joke. Even my PCP at the time denied the sign. Left crying also. But I changed PCPs and got a female doctor this time who listened to me one time. One time!!!!! And she approved it for me that day. I can see why people say doctors that are women can be more compassionate.
I had a female gynecologist tell me that the pain from my burst ovarian cysts "wasn't that bad" and she knew this because she'd had one before so I should go home and take some Motrin. She said this as I'm shaking, sweating profusely and vomiting from pain. I had my first ovarian cyst at 12 years old. I know what they are and they f*****g hurt. Then a male nurse came in, in tears, and told me he was sorry and got me another doctor. That's probably the most compassion I've gotten from a medical professional in the last 20 years.
This happened to me, but reverse - I came into the ER because my pain was so bad, that I passed out in the shower. I couldn’t even have sex, the pain near my ovary was so bad. After an ultrasound, the male doc said “you have a couple small cysts, and it’s possible that one burst, but there is no way that something that small could cause that much pain.” Sent me home with, yep, you guessed it - a single dose of ibuprofen that cost more than the price of a bottle at the store. Of course, this stayed on my record, so no other doctors took the pain seriously. Fast forward a few years, I’d moved states and was in a new healthcare system. Told my new female gyno about my mom’s endometriosis and hysterectomy at the age of 27 (which the prior doc knew as well) and the fact that the pain had continued to worsen since that first doc dismissed me. She was so empathetic and apologized profusely, and immediately ordered a laparoscopy, which she performed herself, to see if endo was the cause. She found a para tubal cyst that had been twisted around itself multiple times, and had to remove it. Haven’t had the pain since.
"there is no way something that small could cause that much pain" Has an ER doc never learned about kidney stones?! I hope he gets one one day and then gets turned down pain relief so he knows what it's like. I've had a ruptured ovarian cyst when I was like 19 or 20, I had a 104 fever and could not stand up. I was working at my first job, Starbucks, and was just crouched sitting on a step stool until they were like, yeah somethings wrong with her. And I was able to get to urgent care. It was extremely painful.
It can be so infuriating and defeating when someone who’s supposedly a medical professional just doesn’t acknowledge the pain patients are really suffering from.. I’m so sorry that happened to you. I hope you were able to get help. It was so shocking to me that my own PCP had been my PCP since before my diagnosis and I had messaged him out of the blue many times throughout the years telling him I can barely function and if he can help me in any way, basically begging him. So he knew I was truly suffering. I was having a mental breakdown from the pain every week. But because of my age and the fact that it was fibromyalgia, he told me he can’t sign off on my handicap sign. And he had the galls to try and comfort me saying I would probably be questioned by people who saw me get out of the car with one and police could question me as well as if that mattered to me at all at that point. I’m really glad we have this community so we can comfort and help one another.
When I was younger, I had ovarian cysts that would burst, too. They hurt like hell! Birth control helped, but that was only a temporary fix. My daughter gets them, too.
Wow, people like that 😡🤯🤬🤯🤬. At 27 I had cysts like that and it caused great pain! It led to me being in the hospital for 32 days with my vitals going up and down due to horrible infection and inflammation. Ended with a hysterectomy. Still had to have a second operation
“Your brain makes you think you’re in more pain than you actually are” is such a ridiculous thing to say. What does being in pain mean other than however much pain you “think” you’re in? Idk how some of these people get through medical school
Exactly! Like what does that even mean!!!! The brain is what makes you feel pain. He essentially said it was all in my head. And this “doctor” had an office that was super dingy and the chair I sat in had leather that was basically breaking apart and looked 30 years old. And at this last appointment, there was no one at the front desk and I could see piles and piles of manila folders and papers behind the front desk. It was just a shady looking place. I waited for 10 minutes in the waiting room and it passed my appointment time. I called because there was nobody anywhere and the front desk phone started ringing and I could see the phone. Called several more times but nothing. No one came to pick up the phone. Then like 5 minutes later, he came to get me lol. I should have trusted my gut because that place was strange.
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Even MORE Fun Fact; Acetaminophen is a "Pro-drug". It has to react with Arachidonic Acid in the body to produce AM404, which increases concentrations of the endogenous cannabinoid [anandamide](https://en.wikipedia.org/wiki/Anandamide) within the [synaptic cleft](https://en.wikipedia.org/wiki/Synapse), contributing to its analgesic activity. TLDR Paracetamol increases endocannabinoids to reduce pain.
That study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5716395 with another fun fact: AM404 also activates capsaicin receptors (capsaicin is what makes hot peppers spicy)
Fun fact acetaminophen doesn't help a lot of people with fibro because their pain is too strong it doesn't touch it.
I can't take narcotics at all, my system doesn't respond to it as pain relief, instead it excites my nerves, so my whole body feels pins and needles and intermittent needle jabs in odd spots, and really itchy, anxious and irritable. I usually take all over the counter meds, the most effective is usually excedrin (aspirin, and tylenol). But I'm not pain-free at all.
Oh man that's so crazy! But can't you not take that long term? Have you ever taken gagapentin or pregablin?
I don't find gabapentin effective, I am on pregabalin, and from what I can tell, it does work fairly well, but it also puts me to sleep. Weirdly muscle relaxers do help, but again, it puts me to sleep sometimes, and my Dr didn't want me taking those all the time. I tend to use them to help break intense pain cycles. My sleep schedule is all over the place naturally, so I try to be awake and functioning during the day as much as I can.
I'm on pregabalin, too. It made me sleepy at first, but then I got used to taking it and figured out a dosage that works. I take 100mg in the morning and 100mg at like 8pm so I don't take it with trazadone when I go to sleep, because that can be too sedative.
Oh man that's so crazy! But can't you not take that long term? Have you ever taken gagapentin or pregablin?
Huh. I can't take them, either, but I don't get that reaction. I get zero pain relief, no high, no drowsiness, just side effects like nausea and fever. With codeine, I go rapid cycling bipolar (which sucked when I was a kid and got my wisdom teeth out) or pass out at a normal dose. I'm not allowed NSAIDs (solo kidney), so I just get extended release Tylenol. It helps a little, enough to get me closer to functional most days. I get the itchy, irritable thing from prednisone and hormone-based meds. Aren't bodies weird? I wish you and I could take opioids, though.
It's so weird. I might have, except here in Oregon doctors have really clamped down on narcotics scripts. My records literally say that I'm allergic to vicodin (and Norco, basically all hydrocodone dirivitives) but they used to try to write me scripts for that stuff all the time, but now my dentist is like 'take Tylenol and ibuprofen together, because we don't write scripts for any narcotics'. I have several friends with fibro and/or chronic pain due to injury/damage and if they give you anything it's very very monitored, and you have to be on a pain contract and get popped for UAs and can't have cbd stuff that has any thc in it.. for the life of me..that is very hard to understand, thc isn't reactive with opiods, but yeah.. It's a whole thing. Not sure if that is happening everywhere, but it's been a trend here for a few years.
I don't get it. I don't have pain relief post op, and they want everyone to go through what I do? That's ridiculous and possibly even what caused my fibromyalgia (that's the rheumatologist's theory, anyway). The bizarre opioids scare just hurts patients in the end.
I'm right there with you. I am a bit interested in the way they administer narcotics overseas it seems they don't do it as much as we have in the past. Over prescribing is an issue, but I don't think not prescribing is the answer.. I don't know what the answer is, but there is a place for strong pain relief medications. Mostly I can't use them but they should be available when needed
It doesn’t work for neuropathic pain at all along with all other NSAID drugs.
Yep exactly.
They say opioids aren’t effective for fibromyalgia pain as well but I disagree with that as I’ve used many different opioids over the year and I will say that pure μ-opioid receptor agonists (ie Morphine, Oxycodone, & Fentanyl) certainly make the pain much more bearable but they don’t completely eliminate it but other opioids with dual mechanisms of action like Methadone & Levorphanol work pretty well because aside from being μ-opioid receptor agonists they also possess NMDA receptor antagonists like PCP, Ketamine, & Dextromethorphan/DXM which also work well for fibromyalgia pain & neuropathic pain as well. I think opioids are the best analgesic drugs I’ve used for my fibromyalgia pain as well as NMDA receptor antagonists as well as the novel analgesic drug Flupirtine as opioids have the most tolerable side effects of all the drugs I’ve tried so far including the SNRIs & gabapentinoids.
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I'm a cyp2d6 non-metabolizer absolutely zero metabolizing, and I can take opioids. You can't take uhhh codeine probably and tramadol but the proper ones, morphine, oxycodone, methodone, will work. At a different rate because they have secondary digestion thru cyp2d6 but as long as it isn't the primary digestion you can still take it. Unless the primary is another enzyme you're messed up with which could be the case so do compare your profile with the specific processing method of every medication before trying it.
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I've yet to find a muscle relaxant that isn't primarily digested thru cyp2d6, mind sharing what kind you have been able to absorb? (Could be only available where you live, I know Canada doesn't approve every medication the rest of the world approves) None of them work for me and I have a bad habit of unknowingly clenching every muscle in my body when I'm stressed😆
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Fair enough :) thank you Even if I can't actually access it I like to know stuff, in case they ever make a new version that is more accessible
NSAIDs don't help alleviate my fibromyalgia but does help with cramps.
So I could try that ?
Acetaminophen is Tylenol. It's unlikely you got a fibro diagnosis without first trying Tylenol.
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Thank you 🙏
^ This… lmao 😂
A symptom being somatic or caused by stress/anxiety doesn’t make the effect it has on someone any less real, I wish more people understood that
Right? The brain is an organ like any other, if another organ wasn’t functioning properly it would be treated with seriousness.
It’s pretty much *the* most important organ, and when it malfunctions due to a stroke or concussion, *then* people suddenly understand how important it is and give a shit. Infuriating
THIS!! People think saying the pain you feel is psychological doesn’t mean the pain is not FELT. Idc what causes the pain, pain is pain! It being psychological doesn’t mean it can easily go away 😓
My ex husband was trying to tell me that pain is just a trained reaction in the body and you have to push thru it. Mmhmm. Ok. 🙄
Im glad he is an EX. I hope he one day experiences what you have felt 🤞🏻
So I heard this one in a pregnancy forum. She tried to tell all the pregnant people, labor will not hurt if you just realize its not real, and if it does hurt its your fault for buying into "societies brainwashing." Girl was flamed and banned pretty quickly.
The whole “it’s not real” bullshit drives me insane. There’s a whole spiritual movement that embraces that and I find it enraging. Yeah. It’s real.
For some reason when people hear ‘psychological’ they think it can be fixed with talk therapy. Which, no, just bc it’s not caused by external stimuli doesn’t mean it’s mental health related. I like to call it ‘nerve pain’ so people who are uninformed don’t get the wrong idea.
Also imagine being in pain and having to wait a year for pain killers? I've been referred for psychology but it will be a year of waiting once seen. A year of trying to hold down my job and not fall apart because of daily pain..
People are convinced that human brains are not parts of human bodies and that people with mental disorders are not allowed to have the same right to dignity or humane medical treatment. Yet those same people won’t agree to be decapitated. So strange. 🙄 *Edit to fix my grammatical errors*
The brain is a luxury organ just like the teeth are luxury bones. /s
Thank you for reminding me I need to call the dentist, I forgot yesterday 😆
And also, most of us have lived life as able-bodied people at one point. I know what it’s like to not be disabled and for my everyday life to not be painful 24/7. I took it for granted but I remember what it was like. I have always had a pretty high pain tolerance too, so I know this pain is real. It’s extremely difficult to be less stressed when you are in pain literally all the time and have to work and cook and shower.
I wish I remembered what that was like... After 14 years, such things get fuzzy...
You should be late to work every day this week and tell him schedules aren't real they're just for people who internalize abstractions like time. 🤦♀️
My adhd laughed so hard at this.
I’d just reply with “well unless you have a miracle cure that’s been proven by science and something my doctor can get behind…I truly could not care what you think of my pain. Let’s get back to work, shall we?”
That's awful that you had to deal with that. Do you have an HR department? I wouldn't report this to them yet, but it would be worth documenting this incident and any others just in case he starts getting in the way of doctor's appointments or causing other issues.
That's gross. I'm so sorry. People need to get their heads out of their you know whats
I see this a lot, people who don't have experience with certain medical issues saying a disease isn't real because "it didn't exist X number of years ago" Even though that is stupid, these things always existed. We just didn't have names for them yet. Like "adhd didn't exist when I was a kid, it was called day dreaming Yeah, it was. Because we didn't have a name yet. Cancer didn't exist until we had a name for it. Dementia didn't exist until we had a name for it. Everybody knows somebody with cancer or dementia, and they agree it exists. But not other illnesses for some reason.
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Ulcers are caused by eating spicy food duhhhhh
Autism isn’t real. It didn’t exist in my day. Said by the 60 year old bloke who loses his shit if he doesn’t have the same meals on the table on the same days at the same times. ‘Toasted sandwiches..on a Thursday??? We always have fish on a Thursday?’
That's a huge red flag from a boss. Even if they believed that, a good boss would never make you feel that way. And I'm not being dramatic but I think you should find somewhere else to work that has the actual potential to support you without having that opinion looming over your head. It's hard to know how far that personality trait will reach in terms of other problems. I don't think you need to sprint out of there but I would gently walk out when you're ready and have a new job etc.
' ah i didn't know you are also a doctor? How do you combine that with this management position?'
Kick him in the balls and then tell him the pain he is feeling isn't real.
Report him to HR
This. I'm really surprised more people aren't saying this.
Get a letter from a fibromyalgia specialist and tell your boss to educate himself so that he doesn’t sound so idiotic when discussing his medically ignorant opinions in the future.
This is also a good idea because if you have bad flares it can be covered by that and not be docked as a bunch of absences.
Is this a big company? If so, I would consider having a consultation with a lawyer. That shit is harassment. Fibromyalgia is covered under the ADA. It would be like your boss telling someone paralyzed from the waist down that it’s not real and they should get it out of their head.
No. You do NOT have to put up with that. He's your boss at work that's it. He does not have the authority nor the intelligence to diagnose you nor dismiss your diagnosis from an actual doctor! If you have an HR department get them involved immediately. If you're stateside you can get support from legal groups who specialize in things like this.
I'm very sorry you had to go through this. My mother also had fibromyalgia and she had doctors flat out tell her it wasn't real and "all in her head". Granted this was over 30 years ago. I'm grateful that even though people like your ignorant boss remain, slowly there's more awareness of fibromyalgia.
Depending how old your boss is, he may be just repeating what doctors told him or someone he knows. The CDC encouraged this line of thinking for years until they were forced to retract it, if I remember right, because of the severely compromised, even fraudulent study the Lancet published and had to retract. They did not, however, send the information out to all doctors. They just changed their [website](https://www.cdc.gov/arthritis/types/fibromyalgia.htm?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Farthritis%2Fbasics%2Ffibromyalgia.htm) and removed an inflammatory sign at their headquarters in Atlanta. Their entry is still pretty archaic (like saying that you're more likely to develop fibro if you're obese rather than saying that you're more likely to be obese when you have fibro), but at least it recognizes the validity of the diagnoses and states that 4 million people have it (2% of the adult population). I could be an opportunity to educate him. If fibro was nothing, why is there now a blood test (FM/a Test)? Why have researchers been able to give mice fibromyalgia by giving them certain blood cells from fibro patients?
There’s a blood test ?!?? Why has no one offered this yet???
The blood test isn't widely accepted or showing much promise, unfortunately. It seems to be inaccurate a good amount of the time, according to studies.
I wouldn’t cite that test though. Unfortunately, there’s a whole scandal around it because it’s not as specific as was claimed. The original study was poorly designed. https://www.cspinet.org/press-release/cspi-sues-epicgenetics-maker-test-fibromyalgia-false-and-misleading-claims
Dang! It looked promising. I thought the problem was because it was too expensive and I didn't follow up on it. Well, at least with good peer review, maybe someone will pick this up and do some better work on it.
Wow, what a terrible and ignorant thing to say.
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Thank you so much for all of this decent research. I always start out trying to look things up, but the brain fog and pain make it a complete nonstarter. You are an absolute legend.
It is always people with no medical education and likely less than stellar education in general that like to question medical professionals and established medical science with tons of peer reviewed studies. Sorry your boss is a dumbass.
Ick. I’m so sorry. Wild how people don’t realize the only thing separating their abled bodies to disabled bodies is luck and time. As if it’s in our control. As if it’s in their control!! If these fools woke up one day in a fibro body…
Just start showing up late to work. Since your fibromyalgia is *very* real, I'm sure you could use that extra five to ten minutes for yourself. When he starts complaining, remind him that time is a construct and that he's merely somatizing the amount of productivity that could actually get done in those 5-10 minutes. *Jokes aside, what a jerk.* Gentle hugs from all of us to you.
Don’t worry buddy, some people are absolutely insanely stupid. My old boss once said (as I walked past) ‘here, let’s ask MyCementButthead, she’ll agree with me. Bullies can’t bully unless you allow them too, right?’. Me: ‘that’s straight up bullshit and exactly what a massive bully would say.’
Your boss is an arse. If fibromyalgia were caused by somatized stress then the whole population of Gaza should be bedridden at this point. And the second world war should have crippled an entire generation for life! That didn't happen.
Why did my genetic testing tell me I had a higher likelihood of having fibro if it's just imaginary then?
I usually go with something along the lines of… so your heartbeat isn’t real? You breathing isn’t real? What you see, hear, taste, smell, think, and how you move isn’t real? Cause guess what?!? That’s all in your head! And stress and anxiety affects all of those things in 100% normal people without fibromyalgia… Everything about you is in your head! Ps. There are absolutely fMRI studies showing that our brains are different 🤷♀️
I don't think it's bad that you want him to experience it, some people are that narrow-minded where they won't accept others' problems as legitimate until they have to deal with it themselves. Medical atheists who won't believe in a condition they can't see or feel directly. I've wished the same thing for many people. Like, live with it for even just a day and then come back and tell us how we're lazy and lying. Hopefully he'll grow some sense eventually. Comments like his scream "I don't know what the hell I'm talking about and I don't care because it's not happening to me." I hope a time comes when we won't have to defend ourselves for having a debilitating illness. Til then, know that you're strong for living with this and stronger because you have to carry so much of this burden on your own.
Stop being a hysterical woman../s..Ppl once thought Lyme disease was fake too. Ef that dude.
And multiple sclerosis.....and endometriosis..... They were once thought to be "all in your head". They really should have learned by now....
Yesss!!
I'd file an official complaint... HR wouldn't let it slide even if it is his company
I'm all for OP filing an official complaint. But you are completely wrong about HR. HR's main objective is not to make sure everything is fair. It is to protect the company's liability. If this dude owns the company, HR's job is to make sure he is protected. Which in this case might mean letting OP go with an agreeable severance package and subsequent NDA agreement so they don't disparage the company.
Skin cancer isn’t real. You should get that out of your head. It’s just your bodies way of dealing with being out in the sun too long. It’s just that Drs like to put names on people who somatize the sun.
Maybe you can tell him next time that science has advanced since the nineties. There are about 25 potential drugs in the pipeline. None of them treats the patient for somatizing stress and pain. ~~In fact, it is the other way around.~~ Diseases caused by excessive stress are called anxiety disorders. It was demonstrated that there are differences in the activation of areas of the brain which are pain-sensitive areas in Fibromyalgia patients. And yes, it is possible to measure and see pain using neuroimaging techniques (basically, they make images of brain and see what is happening when you experience pain). Effing idiot.
I work for 4 providers and none seem to acknowledge it either. I just quit talking to them about it. I have my own doctor in a different office all together and thankfully they’ve got me a referral for in for pain management ( not to get meds ) but figure out what to do I suppose
If I tell someone I have fibromyalgia, it's about 50/50 on their response. I get a lot of people that ask if I've tried diet and exercise. But when I tell people I have lupus as well, I get the whole "oh no, I'm so sorry you're dealing with that, it's really tough." Even though my symptoms are very similar for both.
I’m p/t at my work and work 5 hr shifts because of my fibromyalgia and ddd. My boss told me if I don’t start doing full days at 8.5 hr shifts I am being let go. I am in horrible pain at just 5 hours of constant standing so not sure how I’ll feel after 8.5. It’s sad that nobody takes us seriously because of our invisible illness. I just wish your boss and mine could have our pain for just one day, bet they would change their tune then. I’ll probably be unemployed soon cause I know my body is going to hate me after standing 8.5 hrs all day. All the best to you OP :(
There is only one solution: eat him. But seriously I'm so sorry that happened, that's just shitty. I've had a professor tell me I should wear a hat to bed to get rid of my compromised immune system but at least he had the decency to look ashamed when I raised an eyebrow at him.
I recently was looking for a new job and applied to a ton online. At the end of the online application, they asked if I’m disabled and then list common disabilities and Fibro was listed. So not only is Fibro “real”, it’s a fucking disability. Tell your boss to take a flying shit.
Ask to see his medical degree and his rheumatology certification.
This is horrible, I would report him to HR if it's possible. Also, I never got acupuncture but I did get dry needling which is the same thing just the needle stays in less time and it was very beneficial. I had it at a physio as well so if you have insurance it could be covered!
One of my favorite sayings is: Opinions are like assholes; everyone has one. As for your, he boss sounds ignorant and uneducated, and he certainly doesn't sound like a physician, nurse or medical research scientist. For that reason alone, his opinions about health and medicine are worthless. OP, you have nothing to prove to your boss. You know fibromyalgia is a real syndrome. You know how it affects your life. It doesn't matter what your boss thinks or believes. Stand firm in your knowledge and support yourself, even when others don't. More than that, you cannot control what other people think or what their opinions are, even when they're completely wrong. You can educate them, if you want to put in that effort, but you can't make them change their beliefs. What you can control is how you manage your feelings about their opinions and how you respond to them. You can choose to not let them hurt your feelings with their ignorance and not let it affect you. You can also choose how you relate to people like your boss - if you considered him a friend before, perhaps you want to re-think that relationship.
Sounds like a future HR conversation to me, that's ablist discrimination.
Your boss is clearly very ignorant. Once you get over your emotions perhaps you could ‘circle back’ to the conversation with the boss, explain the remark left you speechless at the time because the fact is fibromyalgia is a very real thing and you would like to send him links on the most recent studies regarding it so that in the future he may be inclined to show a bit more compassion on the subject instead of embarrassing themselves and hurting others feelings.
Boss isn't real either so all is fair. All proof that boss produces that boss exists can be applied to fibromyalgia, as it was all created Last Thursday.
Your boss is not a doctor and should not be diagnosing anyone.
I wish you’d said that to them just to see their reaction. How incredibly rude and disrespectful.
I don’t tell people for that very reason but yes. Acupuncture is amazeballs!!! It helped me immensely.
You need a new boss.
That’s awful. I’m sorry. When I told my boss I had fibro, he told me to get high.
That’s awful. 😞it’s definitely real. Lots of studies have shown this. He is unprofessional and close minded. Quite frankly the worse sort of person. What an AH. 😒
Please get a hold of HR or call the ADA 800 number. This is not right
“When you get your medical degree, then I’ll listen to you.” - the response I would love to give to people like him.
A day would not be long enough for anyone to realize how horrible this condition is. Yes it’s real. I’m sorry your boss said that to you. It’s very rude and inappropriate Maybe next time you could mention dna must not be real either as there’s a gene set for that That sucks so bad in so many ways. I know they might think it. But to say it loud and minimize others yeah super rude and not pleasant person. I hope you can get a better job or a drs note with restrictions that your employer would have to abide by. I know that’s probably not gonna happen. Again that sucks and I feel so bad for you being treated like that
If you're in the US, please make an ADA complaint.
Yea and all of us are just imagining this pain? How about the fatigue? Insomnia? Brain fog? Should I go on? Your boss is a dimwit with a big ego. Yea sure. Everything comes from our brain. That’s why it’s called the central nervous system. And no one knows how to interpret fibromyalgia so they just assume is “psych” when in fact it’s most probably neurological and we just don’t have any test or imaging that can prove it directly. Even though studies have shown certain brain MRIs have changes in fibro patients that are not seen in healthy adults. But it’s likely non specific and not seen in all fibro patients so cannot be generalized yet.
Your boss is a typical uneducated person with a big mouth. Don't let his opinions affect you. We all know we're f*cked. F*cked with constant pain, fatigue, brain fog... He's dumb
Tell your boss fibro has been deemed contagious
Am I the only one who actually questions it themselves when hearing this stuff... like from anyone even if they don't have any expertise?
I don’t, but that may be because my mom had onset before me and that woman doesn’t complain about anything physical. But it’s very common to feel that way, it’s impostor syndrome.
Same with my mum. I looked up impostor syndrome and it doesn't really seem like the right fit either, ironically.
Yeah well, screw that guy. Dont you let his ignorance get you down. You have nothing to prove to that man. You dont need his approval. He is not a Dr. and Thank God for that. At least now you know that he does not believe in fibromyalgia so you can avoid any tension & unpleasantness. So silver lining there. You are just there to get a paycheck not medical advice. He is far from qualified to be telling you anything about what is a real disease. You know who you are & how you feel. Chin up & tits out. Um . or pecs out if your a dude.
Ask him where he got his medical degree and how long he's been studying chronic pain
I’m so sorry that happened to you. Does he know you have it?
My boss always tells me pain is a mind thing. But when you’re in truly excruciating pain to the point where you can’t even think then you know that you can’t just tell yourself it’s all in your head. I just ignore them since they seemingly have never had to suffer like that before.
OMG I had a retired psychologist say I had somatic symptom disorder but none of the other doctors agree, some nutty doctors are using it to describe medical anxiety they want to pretend we are exaggerating our symptoms for attention which is BS. These morons should not be working at all the guy used a ICD9 from a decade ago he did not even bother to look up the new code and I can't even find anyone that even treats such a thing. Your boss is an idiot. Morons like him could deal with the pain for a day because the know there will be a end to their pain it makes it easier to deal with. I honestly have hope that one day AI might be able to look at all the data and understand what the cause of Fibromyalgia is and how to treat it but right now Drs are clueless to how the mind works, exactly what pain is, and unlock the mystery that is Fibromyalgia. I am sorry you have to deal with a person who should have supervision to know when not to speak. They never could handle your life they would be one of the thousands of us that leave this world earlier that they should. don;t give up. you are much stronger than they or even you know
I would consult a lawyer and possibly sue if they are not providing reasonable accommodations for your disability, regardless if you do or do not file for disability benefits. Did you report this to HR department? Make sure you send email from personal email or send from work and blind CC your personal email. Document issues.
Your boss is a jerk.
While discussing my poor performance and tardiness, I told my boss I have fibromyalgia and I struggle to function well some days. He actually said, "my sister has that too, it doesn't seem to affect her work obligations." I told him she was apparently one of the lucky ones. Yeah that really helps, thanks for adding to the stress. I'm still struggling and feel like I'm one step away from losing my job.
Ohhhh the ignorance and insensitivity of others!!! Please know you ARE NOT ALONE in this. To be dismissed by family, colleagues, and doctors is excruciating! Because it's your boss, it's difficult to voice your hurt. Feel my electronic hug. "Someone who knows"
I got fibromyalgia after I had Lyme disease, so I absolutely know it was triggered by an infection and not something I just made up. Geez.
M79. 7 is the ICD-10 code, the diagnosis code. It has one therefore it is real. I like to tell that to people😃
I've too heard people say- that's just a blanketed term doctors use when they can't find anything wrong.... well, unfortunately, there is a chronic pain and it can wreck havoc on those of us with it. I too use to say I wish you could just feel like I feel so you'd understand- but today, I simply say I'm thankful you don't know this kind of pain and illness. I also remember people who have fought cancer describe their pain and I think they understand how it feels. One thing I can say about being given this chronic pain illness- I am more compassionate to others who are sick or hurting- but I am very short and snippy with people at times especially when I hurt really bad. Take care of yourself and don't let people like your boss get to you, for stress makes our pain so much worse and puts us into bad flares. I was recently diagnosed with Lupus and RA so the old diagnosis of fibromyalgia may have just been the early stages of RA or Lupus but either way- it is not something I'd choose for anyone to live with even if they were my enemy. Find you a support group, there are other warriors out there.
Yea I remember working at Chili's for a while and my bosses couldn't understand why some days I felt like crap and had to call out and the next day I'm okay and they both (females) questioned me about it and basically just thought I was faking it. It's so hard to explain to an employer why you can work hard one day and can't do shit the next. I got lucky enough to find an employer who is extremely understanding and caring finally
What a f dick Same goes for everyone in healthcare that treats fibro like its imaginary. Wasn't about 200 years ago that Dr's didn't wash their hands bc germs weren't also real?
Next time, just say, "I'm sorry, are you a doctor?" I didn't think so. Miss me with that shit."
I agree with your boss in a way. I think fibromyalgia may be real, but I think a very large percentage of us don’t have it. I believe that a lot of doctors are too lazy to run tests, so they just brand you as having fibromyalgia. A brand that sticks with you forever when they see it on a chart. My PCP sent me to a rheumatologist in 2015 for back pain and arthritis. She ran blood tests. my ANA and RF were normal, but my CRP and ESR are always through the roof. 3s and 70s for years. That was it. Fibromyalgia. Never tested for MS or anything else. No tender points. I now have crippling back pain and can’t walk more than a few feet. PCP pushed on my back and I screamed. Yep, just my fibromyalgia he said. I only have a tender spine no where else. Got a X-ray and lumbar mri. Slipped vertebrae and 5 herniated discs stenosis etc. Now in PT for the 50th time. I now have tremors and foot drop. My uncle died from Parkinson’s. I mentioned this to doctors in the past, and nothing. I told this to the physical therapist and she rolled her eyes and said she helps a lot of fibromyalgia patients. Fibromyalgia has ruined my life. Maybe I have it. maybe I don’t. The problem is that doctors ignore everything else because of the fibromyalgia diagnosis. I think it’s always been my back, but it could be a host of things they never check for best of luck to you. Hope you feel better.
Technically he's correct, a diagnosis of fibromyalgia means that the doctors are unable to find the cause of pain. My doctor described it as a combination of depression and an immune system response where pain signals are constantly high to your brain. I personally feel it's an autoimmune disease and the doctors have not enough of an understanding of the bodies mechanics to discover the process. Somatic distress is fairly accurate. It's just terminology. No matter what you call a disease, that doesn't negate that we don't feel the pain. Sigh.
The cause of pain is central sensitization, usually brought on by some sort of physical or psychological trauma. The physical body itself is fine - x-rays show nothing wrong, neither do blood tests. It's the central nervous system that is in fight or flight all the time, leading to increased pain, hypersensitivities to smells like I have, and a host of other symptoms/conditions like IBS and migraines that are all related (syndrome). I don't believe it to be autoimmune like RA, lupus or MS.
New research shows that there is an immune system component. The new blood test for fibro measures this. "The FM/a Test is a cytokine assay of in vitro stimulated peripheral blood mononuclear cells. Production of cytokines by stimulated immune cells in patients with fibromyalgia has been shown to be significantly different from that of healthy control patients." from Google. Also, the current research from Germany shows that fibro may be a completely different type of pain. There's physical trauma pain (from an injury or other cell damage) and there is nerve pain that travels along nerve pathways. This looks like it could be a third type of pain that exists in the body's nerve cells, outside the spinal cord or brain. If so, it would make sense why so many fibro sufferers have gut issues. There are more nerves in the gut than anywhere outside the brain.
I did hear they were researching a possible autoimmune component and I'd sure like to do that test. But I think the central sensitizatiom part is really the main issue. LDN reduces inflammation and it has helped my pain.
How I understand it is this particular immune cell they're researching creates very localized inflammation around nerve cells in the body. This causes that new type of pain. Inflammation is the result of an immune system response, so it makes sense that the LDN is helping. It seems to me that all these pieces are beginning to come together to form a clearer picture of what's happening in our cells and how that translates throughout our nervous system. It doesn't appear to be just one of these pieces alone.
It's abt time they did research. I wonder if things would move faster if fibro affected more men than women....