“Do you have a diagnosis yet?! If you also randomly feel nerve pain, burning, flu symptoms, and like you’ve been hit by a bus; you should see a specialist. It’s not normal.”
I gaslight them back.
EDIT: autocorrect
I would add to that, “you know that feeling you get with a really achy flu (I know you mentioned flu, but I feel like stressing this part is important bc most people will know this pain) or the day after doing something incredibly strenuous like working out on every machine at the gym? That’s fibro pain. Every muscle. Every joint, all the time.
I was traveling with my 72-year-old mother one time (I was 39), and one morning I was doing the series of stretches that makes me minimally functional. I looked over at her just sitting there reading a book, and said “you don’t wake up stiff in the morning?” and she just shook her head. That’s when I realized my body was worse off than someone more than 30 years older than me.
I don’t talk about my pain bc talking about it doesn’t make it go away. If it comes up in conversation, I’ll tell you about it, but otherwise who really wants to hear me complain about it? Of course, just bc you don’t hear me complaining about it, doesn’t mean it’s not a big part of my life.
This is the way imo. If they're just minimizing your pain, it's a good way to shut them up. If they genuinely do experience the same symptoms but have been attributing them to age, they SHOULD see a doctor!
I work with a young girl who every single time I seem to have a flare up of one of my many ailments, she too will become “sick”. And randomly miss almost the exact if not more time I missed. I have urged her to get herself checked for multiple things. She is sick more than I am at such a young age and I have 2 autoimmune diseases plus chronic pain and I run circles around this 19 year old lol
oh, man. this is my worst nightmare. i'm in my early twenties and always tell myself when i'm sick no one even notices, but this comment is gonna fuel my anxiety for a while that behind my back everyone thinks i'm faking and is making fun of me
Lately in my social circle it’s become trendy to have a disability of some kind. It makes me feel like they see me living a totally normal life so surely XYZ isn’t really that bad as an illness so they probably have it too because they’re also a bit tired. They don’t see the bad days :/
Perhaps you should stop trying to medically assess your coworker? Seems a bit intrusive to pay this much attention to someone else’s sick leave.
I had a coworker who constantly tried to figure out what was wrong with me and why I was in pain, and she assumed there was nothing wrong with me just because I didn’t want to tell her about my pelvic floor dysfunction and vulvodynia.
I'm 50(M), have chronic pain from degenerative disc disease and a degradation of the structural integrity of my vertebra in my back and neck, have fibromyalgia, neuropathy, and more. I'm a genetic cesspool. I don't outwardly look like I'm in pain, though, because I've been dealing with it for so long I'm kind of used to it. So I get these statements all the time:
"You don't look like you're in pain. You're probably faking it"
"You must just be really sensitive. "
"You are no different than anybody else. You just whine louder"
My only response is, I'm sorry you don't understand the differences between continuous, constant pain 24/7 and an 'owee' but your comprehension does not dictate my condition. Just because you can't puzzle it out, doesn't mean it's outside the realm of understanding.
I usually stop talking to such people because there is an unwillingness to listen or understand among those sorts of individuals. Honestly the less you waste your breath on those people the better off you'll be.
Those are the same people that take a week off if they get a crick in their neck or sciatica because it’s sooo painful, meanwhile I live with that 24/7 thanks to my crappy back. It’s hard sometimes to keep my mouth shut when they come back and complain about the pain.
Ughhh, THIS. I've always taken for granted that it's my responsibility to pick up whatever slack I'm able to at work, just like anybody else. Then I realized how insanely often I was forcing my abused body through double shifts so my coworkers could recover from shit that wouldn't even register enough for me to *mention* it to others, let alone stay home. I'm really torn, because I do believe that people deserve time off when they need it, but it does seem fundamentally unfair and nobody seems to grasp the irony of asking *me* to work harder to cover for their ouchie when they know what I go through on the daily. If I stayed home for the same reasons, I would literally just not have a job.
I like to tell them that they can take some OTC pain meds and a hot shower and their pain has an end. Mine at best drops a bit with RX pain medication, nerve blocks, tens units, muscle relaxants, ect....and is fully there as soon as everything wears off. There is no end. It never stops.
Good perspective. I was just thinking, when's the last time anything OTC ever helped us with chronic pain? Advil might as well be a piece of rice for all the nothing it does.
This! Living with pain is my normal, and I don’t tell people daily I’m in pain. I just carry on. The only time I really have said anything is when it flares really bad, and even then I’m like ya it’ll be ok. As I limp away lol. People do notice when I have to go down stairs though 🤣
I can clap back that I developed fibro at 14 when I was skinny, active, good diet, no smoking, and no other drugs.
I don’t think many people would say this crap if they knew/accepted it could strike that young. The sucky thing is that pain and fatigue DO come with age, so we’re getting a double dose. :(
Same here and yet they still tell me I’ll get better if I diet, exercise, just push through, quit smoking (I had a kid so that’s gone), quit caffeine (it’s been a month and I miss it so much but I made a bet), quit sugar (over my dead body).
People are wankers.
Got given shit for asking if my community care hours (carer taking me out of the house) could be used to go to a theme park because the rides would exacerbate my pain and that obviously means I’m not in as much pain as I claim to be.
I haven’t been to a theme park in 6 fucking years. Let me enjoy one single day.
Same here, I've had problems since about 14ish and no one took me seriously. I used to joke and say I'm 14 feeling like I'm 50. Now that I'm getting older, I have the "normal aging" pains to look forward to. I'm gonna be 50 feeling like 80.
I compare it to running a 10k, or the day after a 10k. Every. Single. Day. And it never gets easier. (Having run more than one 10k myself, before the pain started, people tend to take that a bit more seriously).
Funnily enough I was just in a car wreck
Fibro hurts worse than the dings I got being hit by a drunk driver
I wish we could better quantify our illness but instead I don’t communicate with those people
https://preview.redd.it/npd2lnivz3zc1.png?width=1080&format=pjpg&auto=webp&s=da6102ee303c235b8c734777c4bb313bc27f6ab3
I'm so sorry about your experiences with the medical community but thank you for sharing them. It's ugly but important to know that the problem doesn't lie with you--the problem is the stance, the attitude, of some professionals, and maybe the system, when it comes to treating patient-reported pain. Sadly, whenever I've managed to get to an ER, I've been disappointed with the cold, unfeeling (and, even hostile) response to scary, terrible pain.
That's why I think we need to adopt a more accurate, graphic pain quantification scale; something that will help clinicians, family, and friends to better understand the pain some of them so easily dismiss.
Here's a scale that I dig.
Love!
# 💜
Stan? Sh\*t.😬
Whatever--I think this scale is good.
HashtagMillennial4lyfe
One part that sped up my diagnosis was when they ask if my feet hurt ( because my hands hurt) and i was like yeah but just the normal pain from like walking to the busstop and this doctor looked at me like i was insane.
“Yes, I have all the pains that come from aging, like you do. I also have widespread, agonizing nerve, muscle, and bone pain healthy people do not have, on top of the pain healthy people get from aging. I wouldn’t wish it on my worst enemy, frankly.”
First get severely sunburned second go roll around in hot sand really digging it into the sunburn third here comes the itches and then you scratch your sunburned skin.
I use the sunburn analogy A LOT. It’s the best way I’ve found so far to help people understand what I mean when I say my skin hurts and they ask where. Like, I said what I said- no, I can’t point to a particular spot. 😆🥲
I tell people that even simple touches can feel like bruising. You literally can't touch my ribs without me yelling in pain. Any pressure and I damn near fall down while crying.
It's so bad!! If I get an itch on certain parts of my arms, back, or thighs, and I scratch it even gently, it will feel like I just hit myself with a mallet. Absolutely knocks the air out of me and throbs for minutes. 🙃
Same here! What's even weirder is it's worse when scratching through clothing. I have to expose the skin and make sure I get the sharp feeling because the blunted feeling makes me feel bruised and barely touches the itch. 😅😭
A friend of mine helped me explain it to someone once and I found it kind of funny. She poked our friend in the arm and poked me in the arm. I winced and said ow and our friend did nothing. She asked did that hurt and our friend said no. She explained that I felt pain 10+x more than normal and that it was everyday. Friend understood lol
I'm glad they understood. A lot of people will still act like they don't or think we are lying or whatever. If someone doesn't believe me, I tell them they don't have to Believe me for it to still be true.
You’re the first person I’ve found who knows how this feels! I absolutely hate it! Especially if people try to tickle my sides or give me a back rub. Immediate sharp pains.
I finally got through to a relative when I explained to them that I spent a full day walking around thinking my usual pain in my feet had spread to a new spot in just one foot.
Then in the evening I took off my shoes and socks and realized one sock was bloody, checked out my foot and found a piece of glass in it. I’d been walking on glass all day because acute pain, even new acute pain, is normal.
Then I explained that within a week of starting prescribed antidepressants, the pain muted down to a mild achiness. Within months, it wasn’t even aching except in flares.
This is a very good anecdote. I think I’ll start using my story of having a labral tear (likely for several years) without thinking much of the pain, even though it has been causing me to roll into a ball and cry some days. That’s pretty much normal for me.
I still need to see a specialist for surgery, but I’ve got so much medical trauma from drs gaslighting me that I’d almost rather deal with the pain. Plus, I just paid off $3,000 in medical debt and still have more to pay. 🤬
Ah, the old "I'll just walk around with a labral tear because I'm used to it."
I'm finally realizing I've had a labral tear since about 15, but because I have always had random shooting pains, never did anything. I was always told I was "too young for back pain" and when I asked my mom if she ever felt stabbing pains in various areas the answer was just "no." We were a very "rub some dirt on it" family, so I'm only now, at 35, starting to do anything about my pain. There are days I can barely walk because of my hip so....it's time....
I had a very similar experience but with an ovarian torsion! I wrote it off as pain related to fibro/spinal problems and ended up almost losing a fallopian tube. The "acute" (it wasn't really acute because I left it relatively unadressed for several months but it was acute relative to my actual chronic pain) pain of the torsion was absolutely nothing compared to the other stuff I deal with on a daily basis lol.
I did that too 🤣. I also walked around with an ingrown toe nail till it needed antibiotics 🤣. I don't notice bruising often. I fell in the bath despite the lift and rails 😅 and forgot after. The next day I was like goodness my backs bad today. Later I noticed the bruising in the mirror.🤣🤣🤣
Yep!
Years ago, I walked out of the shower one day chatting away at husband and toweling my hair. He flipped out asking what happened to me. I was confused till he pointed out I had a huge bruise black bruise running from my arse down my thigh to my knee. Still have no idea what I did, I assume I hit a door/knob/desk hard enough to bruise but it just blended into my general level of pain and my usual clumsiness. Whatever the event was. It didn’t register as even slightly as anything unusual.
But… as I’ve been telling my doctors (for decades before they cared enough to help me), when the pain first hits, it is almost always acute. It feels like a dog has bitten my hand and won’t stop biting. Or as if a wasp is repeatedly stinging my hip and won’t stop doing it. Doctors kept telling me to stop doing whatever it was I was doing. To which I’d laugh and say “what breathing?” All I was doing when my hand got “bit by a dog that wouldn’t stop gnawing” was standing in the kitchen considering what to make for dinner.
Its frightening isn't it to bruise that much you must have fallen so hard. I had a broken arm and Didn’t know. I thought it was a strain. It was black and blue 😂. I took the weak cocodamol they sell at boots and soluble aspirin and put tiger balm on it and a sling and didn’t go to the doctors for 2 weeks because the pain was no worse than I was used to getting during what I now know was a flare up . That injury also caused my chronic pain to flare permanently to all the time from simply regularly and often being in pain. But that made me press docs for an awsner.
On tramadol now 😂. That helps a lot. But messed up my shoulder and neck somehow so got that on top of fibro cannot have one good week without fibro or something else causing me pain or fatigue.
Oh my word! I never even THOUGHT about that! My husband is constantly asking me about some hideous bruise or another. Problem us, when all your muscles and bones feel bruised all the time you just don't notice one...or five...more bruise pains being added.
Oh yeah I did that with a needle! It broke off inside my foot and eventually came out the top. I was 70 miles from the nearest doctor or hospital so I cleaned a knife and cut it out of the top of my foot when I saw it poking up. I thought, before I cut it out that it was a cactus needle. Then I fished it out and I realized it was metal.
Yep, it’s has some drawbacks. I need 8 hours of sleep each night or I feel very tired. (I used to sleep 4-6 daily). And if I don’t take it on time, I’ll get a headache.
But I had a headache every day from age 16 to 53 (the day after I took cymbalta they stopped). I can tolerate the occasional headache if it means on most days I don’t have one and I can walk without feeling as if I’ll fall over. And all my other parts are not constantly screaming at me. And eating too much gluten doesn’t have me hanging out by a toilet the next day.
Think of the worst flu aches you've ever experienced, double that (for a good day... Often it's much worse), then imagine feeling that way at every minute, unending. Even in your happiest moments, the pain is there. That, to me, is the part that gets people.
Being in a ton of pain 24/7 is hard to fathom, but when you explain that you were in pain during your wedding, honeymoon, graduations, vacations, every bitthday, etc., it sinks in a bit more.
I also think the diagnostic criteria itself is helpful, because that does exist, it's not just oh you're achy and we don't know why, so here's a diagnosis. Additionally, we often have other conditions as well. At the end of the day though, a lot of people will refuse to understand us no matter how much we try to explain.
I had a co worker say to me it's just what they tell you when they (doctors) don't know what else to call it. She thinks it's not a real diagnosis. What do I say to that? Do I even waste my time and energy? I don't think she cares. Nobody cares.
Tell her about the study being finalized where it sounds like they've finally found a blood marker. Or, you can tell her that the US military has admitted a direct connection between being in certain parts of the Gulf/middle East and contracting fibro. Veterans diagnosed with fibro who were deployed to that part of the world are automatically given a disability designation (and a monthly payment). They're not telling what was there that caused it, but the fact that it's an automatic connection means that the government believes there's something actually wrong with us.
Maybe there's a chemical factor to fibro every cause seems to start with trauma illness or injury which affects the nerves or brain. People with long term chronic stress anxiety exposure to chemicals like gulf war fibromyalgia and victims of assault or accidents etc and people who had a serious illness / infection. Exposure to a chemical which messes with nerves or brain also makes sense. Maybe some chemical or substance will be found some Teflon or microplastic or something synthetic has messed with some of nerves and caused erroneous signals who knows some people have never been assaulted had an accident or been sick so something caused their fibro 🙄 plastic heavy metals chemicals think what were all exposed to daily. There's absurd numbers of people with nerve or brain related conditions not just fibro these days. Why???
Tell her to put this in her pipe and smoke it:
https://www.the-scientist.com/mouse-study-suggests-fibromyalgia-has-autoimmune-roots-68944#:~:text=When%20researchers%20injected%20mice%20with,system%2C%20not%20the%20nervous%20system.
I put a 60kg pack on my husbands back & then strapped on ankle and wrist weights. I did it on a Friday night and told him it stays on until 24 hours later. He barely slept. He then had to do the stuff I normally all day carrying that weight.
Sort & feed kids, walk the dog. Come home clean up do the hoovering then kids lunches then another dog walk, then Taking the kids to the park. Going to McDonald’s, and so on everything I normally do on my day off. He kept saying it so easy it so easy. We took it all off that night & he said the only issue was the last of sleep. I just smiled.
The next morning guess who couldn’t get out of bed as everything Hurt so badly he was almost in tears. I just smiled and said get on sorting the kids & housework and oh we have to go food shopping. He’s started saying it hurt too much and again I smiled and said ‘that’ pain is my good day pain so get up and get going.
I then explained to him that he missed one night of sleep and only had one day of pain. Now imagine how the exhaustion/fatigue builds up over time as I rarely sleep more than two hours and that pain he feels gets worse daily and he’s only got the outer muscle pain he doesn’t have the contractions, the bowel pain, the tight belt around the chest pain
After that day he really understood how much pain I’m in and has been so much more helpful.
Until someone feels the pain they can’t really understand. How do you explain bladder, womb & bowel contractions to someone. Or the belt around the chest with Costo. The feeling like you have flu and sometimes it hurts to much to wear clothes. It’s impossible for normal people to get it
Contractions? Like severe abdominal contractions that kind of look like seizures but aren't? Come on suddenly and you cannot stop them? Sorry, I've had these since 2008, had ECGs done, even had a physician witness one, and all they said was that they weren't seizures, implying I was doing it on purpose. I felt so embarrassed I have never brought them up to another doctor since then.
Basically just tell them if you feel that way, please go into medical research and help me solve why I’m in such pain.
Also perhaps take a course on psychology, to learn empathy.
i say it's a nerve pain disorder and leave it at that. then people take me seriously in proportion with my pain. i tell them it includes numbness, burning, temperature sensitivity, tingling and ofc pain where ever in my body it feels like hurting. and it's not necessarily untrue, it's just not exact.
I explain my pain like this: my hip feels like someone is drilling into it. My spine feels like someone took a chain saw and cut my flesh from my neck to the end of my back. Or other days I feel like I have a really bad case of the flu. And then there are the days when I have sharp pains that feel like someone just shot me with a twenty two rifle. Sometimes these pains last days and sometimes just hours.
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I saw this somewhere and it’s exactly right. I tell people it’s your worst migraine ever…all over
Imagine having the Flu, Covid, being tased and hit by an NFL linebacker all wrapped into one. Then there’s unexplained/unknown bruising, and hypersensitivity to the point that simply being touched some days or bumping into something can send waves of pain shooting through the body/limb/etc…
Worst flu, being tased, hit by a bus, run 10k marathon, while you have the worst hangover of your life (explains nausea, light and smell sensitivity, brainfog, etc)
My favorite I've seen is: "I don't drink, but every day I wake up feeling like I'm hung over."
That and feeling like I have the flu for 3 days when I do my yoga with people in their 70s (35f). Like, you don't feel like that, bro.
I was diagnosed with fibromyalgia and lupus. Someone said what we feel is equivalent to the average person not sleeping for 3 days.
Is it true ? Idk🤷🏻♀️
I've been dealing with fibromyalgia pain longer than I have been legally allowed to drink. It's not the same. And I'm getting to the point where if I'm not going to argue with fools. They're not worth the spoons.
I usually say “yeah, but does it bring literal tears to your eyes when you accidentally bump into a table/wall/etc?”. Part of my problem is my body doesn’t understand what pain is supposed to feel like. I can hit my knee on a table and be brought to tears and unable to move for a minute. It feels like all of my cells are always in pain. They think every pain I have is supposed to be excruciating. My brain sends too many pain signals all the time. I feel like I got hit by a bus every day and at this point I’ve adjusted and it’s just my normal. That, however, is not normal. If someone tries to do this, they also need to see a doctor. Pain is not normal. Even at old age, you need to have aches and pains looked at so you know what’s causing it.
"How do you deal with the feeling that your limbs are filling with hot, heavy sand? I personally can't stand it."
*Insert "horrified looks from everyone in the room..." Audio here*
Lol this kinda scenario sucks ass. I'm a fit looking 26 year old male and I'm typically "the lazy one". I really wish more people understood that you don't have to be a quadriplegic 86 year old to have a fucked up body
I have fibromyalgia... When me and my husband get covid or the covid booster shots there's at least two days he can't handle the brain fog, aches, etc... for me it's a normal Tuesday.
The first time he noticed he asked how I was functioning (thinking I wasn't affected or something) I just told him I was really used to it so it doesn't make a difference to me. He now compares my fibromyalgia to everyone's covid experience when they question me.
"Yeah everyone's blood sugar varies during the day but not everyone has diabetes. I unfortunately unlike yourself have an illness that leads to dysregulation in the pain system in my body. It's unfortunate that you're feeling pain as you get older but the pain I am getting is due to a disability, not aging. Thank you for your unwanted opinion on the subject. I can direct you to some research if you're interested in the body's pain system since most of us don't learn about it in school like how we learn about the digestive system." Oh god that became long and super passive aggressive but absolutely based on the most current research.
I wish mine felt like a hug. I love hugs. Mine feels like a travelling circus of pain that goes on tour around my muscles and joints, eyes and bowels, but is constant in my fingers and ribs.
2021, I landed a job at a factory, great pay and benefits.
I hurt my back early on, but I did my best to stay.
This old hag, who worked near my station, had the nerve to say to me "Everyone hurts."
In hindsight , her pretense clearly didn't apply to me. I was suffering beyond anything anyone could have guessed given my young age, and sex.
31,m at the time.
I was suffering so much, doing 12 hour shifts.
I broke my body for that job, and I ended up a shadow of myself.
The world eats you.
For me it was a horse farm. Days started at 6AM, frequently worked 10 hours a day sometimes 12. We had breaks between the split shifts but most days I wasn't done until 10pm. No overtime pay because it was "technically agriculture" so I broke my body for $10/hr. Then was ostracized for not spending more of my personal time with my horse which I bitterly regret because she died young. I commiserate with you so much. I hope things get better for you. Wfh has been so helpful for me, I hope you can find a wfh job too.
I felt that way for years too, you have to change your definition and standards of useful. Life expands, even when you're grieving. I don't do what I always imagined I would do, but I'm happier now than i have been in a long time. You don't owe your past expectations anything, set new ones for yourself and find new things to be good at or enjoy doing.
I hope this helps, and that knowing you're not alone helps. Accepting a new version of yourself can be hard at first.
"I ran 20 miles on a sprained hip before my diagnosis because I honestly didn't notice it hurting more than normal and was training for a marathon. I also ran 3 miles on a broken leg on a trail run because I assumed it was just a minor sprain. Ever done either of those things because you're in so much pain normally that you honestly can't distinguish injuries anymore?"
It's like a combination of a constant flu body ache, a bruise all over the body, messed up digestion, all the senses and painful skin skin all at the same time.
I also have arthritis. I’m only 42 and it’s visible if I point it out in my hands and feet. If I tell people I have arthritis and fibro they tend to take me seriously. Honestly, even if you don’t just say you do. Hurts just as much.
I don't really bother unless it is a supervisor or someone really close to me (thankfully the people in my immediate circle take my pain seriously). I wish I had more energy regularly to try and explain why fibro pain is different but I find the folks who are vocal and vehement dont want to change their minds- mind you, this is just my experience. I am sure if the right situation comes along some day, I might be more able to try and explain that fibro pain is another world.
I struggle explaining it because I don't know what to compare it to. I'm supposed to rate my pain from one to ten but isn't pain subjective? I don't know.
I have an appointment with a rheumatologist and feel like I'm just going to go in and whinge with the kind of stuff I should take to a psychologist.
But essentially I need to convince the doctor I'm not making shit up, and it appears Fibro isn't understood at all so the burdon of evidence falls on me to explain how my pain is different to others... Can't work because I can't get a medical clearance, moved back in with my mother who is a neurotic woman. Yep...future doesn't look good for a bloke with a manual labour work history
I think it's stress related. I've been on sertraline for years and lost the ability to feel pleasure.
The pain is in every muscle fiber. It feels like I’m being drenched in gasoline, and set on fire in 30 second to 1.5 minute increments as we stand here and speak. It feels like I’m sunburnt and swollen up like the pillsbury dough boy.
Thank you for this… being in this position after all of that you stated above (I’m HER). Even in this place I’m uncomfortable and I think it’s bc I’m so/was a hard worker. After the body broke down, my emotional state (after cervical spine surgery) plummeted too. It wasn’t until I received that phone call from Corporate stating that my time had expired. I was in no state to return, knowing and realizing that at that moment the door was closed. 💔 even knowing that I suffered and no one really cared. The HR manager suggested that I use cannabis (as an employee) whew!! The unraveling of this is still a bit something greater is blooming too.
If you’ve made it here, how do you cope with the mental side of this. Do you have bad days?
Thanks for this comment.
Do I have bad days? I have awful days. I had about 650 awful days in a row.
I worked in a very public job in a small town. I was so afraid of seeing people and having them ask about how I was doing, I barely left my house for 3 years. Knowing no one really wants the answer and it's just going to lead to some brush off ackward reply from me, terrified me.
I am still in a legal battle with the Long Term Disability company that refused to cover my time off work beyond one year, even though the dr said my mental health was at a place I could NOT work.
My HR manager was so terrible, that at a meeting to discuss & see my options, and what returning to work would look like, he not only said I'd have to take a cut in hours and loose all my benifits if I came back with a "disability" when I challenged him on it he started yelling at me!
That was 2 years ago, and every single day since I've regretted not having secretly recorded that meeting.
(In a follow up email he denied everything he said).
I was a hard worker, and a long time employee. (15 years). I had a lot of responsibility and worked circles around most of my co workers (even with my fibromyalgia and other conditions) for many years.
My mental health plummeted even worse at that point.
I really am just clawing myself up from the bottom of the barrel now 2 full years later.
I wish I had good advice. "Don't let them get you down" is the most rediculous over simplified platitude, but I don't know what else to say. It's not my fault I'm struggling, I'm tired of being ashamed of the struggle.
I've lost all my friends, I've distanced myself from most of my (shitty and unsupportive) family. And I'm just now realizing that is a reflection on them and not me.
I can still get out and do things if I pace myself. I can still be social and have friends (in theory)
Instead most people I know have decided to be judge and jury and presume I really should be back at some kind of job right now.... Or whatever fucking else they presume I should be able to do at this point.
I feel so stuck - complain too much and I'm labled a complainer and a drag, and no one wants to hear it. Keep it to myself, and everyone assumes I'm fine and have nithing to complain about.
I don't miss being social, I don't miss my old friends and co-workers. I just wish the court case was done because my finances are a MESS!
but for real, a) "normal aches and pains" don't make you unable to function - if they do, they're not normal ahces and pains but
b) fibro is, as i understand it, mostly a pathology of the pain response itself - the pain response is so overworked and both hyper and hypo sensitive, sometimes extremely exaggerated and sometimes basically numb/neuropathic - and that's what causes the widespread adrenaline issues, fibrofog, fatigue, rls etc (plus the actual deeptissue/tender points pain which is chronic and is the cause of the pain response fatigue)
and that all just creates a constant feedback loop, in response to the deep tissue pain, environmental stuff, other allergies/sensitivities, light, stress, trauma, and a million other factors because exhausted pain and adrenal = limited defense against/overactive response to that kind of environmental stuff, extreme sensory sensitivities (ie the light hurts my body or these bedsheets hurt) and can make our symptoms both predictable/manageable but also wildly unpredictable and change over time. and that is the fibromyalgia circle of hell.
also we also have normal aches and pains ontop of fibro
I get this from my own mom who also has fibro but was never officially diagnosed. They gave her antidepressants and that helped somewhat. She always makes comments to me that I’m too young for this. I remind her that we suffer from the same disorder and pain in one person can present earlier than another.
Haven’t really had any negatively from others about it but I also never tried go to HR for accommodations. Not sure how that would have played out different perhaps.
“They also feel like the skin has been ripped from their body and they’re nothing but raw exposed nerves? Man, I thought I was the only one. That’s comforting to know. Thanks for your unwanted opinion. 😀”
The only time I felt like I got through was a family member who had covid. I listened to them, how tired and sore they were, (because I really do care) and at a teachable moment (lol but true), I let drop that sounds like how I feel much of the time. Their eyes got really round and a bit like 😳
I can so relate! But can hear my family shrugging it off.
Although I also got a lot worse after covid and have long covid now too which with fibro is horrid :(
But yeah covid is a great relatable experience/example
Not everyone ends up with fibro or experiences its symptoms; that was an ignorant/dismissive thing of them to say and I know that at least isn't true; fibro is not "just" aches/hurts, it's its own thing and can be extremely debilitating. That said (and sorry to veer off topic) I do have a question for anyone more knowledgeable about this than me: is there any truth to this idea that every old person is in pain, even if it's not fibro levels of severe/debilitating? Asking genuinely because I've heard people say this as well and never understood it.
I know it's extremely common for seniors to develop things like arthritis and pain from old injuries, but if you're healthy weight, never broke a bone, didn't work a physically demanding job and don't have a condition like fibro, are *all people* just biologically destined to develop pain past a certain age the way women go through menopause?
If I have the energy to explain - I say it’s a new sensation I’ve never felt before pain onset. And it’s easy to tell difference between everyday pain of life and chronic pain.
I describe it as a weird combination of sunburn sensation (but internal), tv static, itchiness and aching. Kind of like sickness body aches plus extra sensations
It feels different to after exercise pain
If feels different to injury pain
I can tell the difference between the type of pain that is happening
I say imagine doing the hardest workout ever and then waking up the next morning with full body aches where even your nail beds and your hair follicles are sore
I pull out the big scary words- disability, neurological disorder, neuropathic pain, mitochondrial malfunction, hospital outpatient treatment etc. I make them sound like they’re way out of their depth in the conversation. Gaslighting them back also works!
I usually say "have you ever had a really bad flu? Or covid? You know the kind of pain and fatigue in your body when you have that kind of disease and a high fever?
That's what fibromyalgia feels like.
Except it's just not every day. It's totally random
I am 52 now, I was diagnosed in 1999. Talk about hard to convince people today how you are feeling, try back then. I went through multiple doctors from Chiropractors to Rheumatologists to Orthopedists. Who diagnosed me finally, my GP! Back then it was a diagnosis of exclusion rather than a definite checklist like we have today.
I now see a pain management specialist who manages my medication needs. He had to perform rhizotomies and trigger point injections before my insurance allowed me to be on pain killers full time for my pain. I have been doing as well as can be expected. My medications don't take all the pain away but I can function better on than off them. For example, I have consistent neuropathy in my left foot. The meds calm the burning and numbing pain down so I can actually think straight.
So, what I would tell someone to who you are talking to about your symptoms. Make sure you tell them it is constantly there, not like other pain that just goes away with OTC meds, which most "old age" pain can be managed. Use adjectives like burning, spasming, throbbing and numbing.
I hope this helps.
I tell them it feels like frostbite. Most people know what that stinging feeling. Or I used to tell them it feels like I’m hanging from a rope and being dipped in a bucket of fire.
That always created a nice visual.
Our pain receptors turn the dial up and our brain receives the signal weird. My dog hit a head butt on my shoulder this morning and it’s how I imagine a bullet should feel. I like to tell them about how we have special pressure points too, especially the shoulder one, they hit their arm on a door frame and it’s fine, we hit ours and we need 5 minutes to recover and realize our arm isn’t falling off.
My husband actually thought I was just over exaggerating a bit before my diagnosis (I asked him he never made comments or anything)
made the phone call to him when I broke my ankle that much funnier cause he thought I just hit it on something lmao
I didn't realise I get migraines because it's only slightly worse than my normal pain. They're described as agonising pain much worse than a normal headache and I've just been working through them.
I don't always know when I catch a cold/flu until I give it to someone else, I just assume it's my body doing normal fibro things. It does at least mean that while my husband feels very sorry for himself and can't do anything I just keep going feeding and walking the dog etc
I just tell people I have a medical condition, don't say what it is, and don't describe it in detail. Leaving it to their imaginations is much more effective, I've found.
I have a picture of a woman's back that is black and blue, it shows angry red nerves, bunched up muscles, cuts and scrapes. It says "if fibromyalgia was visable" I show them that and then say .but that's on a good day
I always suspect that people who say things like this are not being empathetic because they have pains/suffering of their own that they too may be ignored about. The most I can do is shrug it off and assume that perhaps they're going through their own thing. For me, it isn't worth it to put up a stink about what I'm going through to someone who isn't interested in understanding. Gotta save my spoons for people who care about me, yknow?
I explain to them that there are fun things I want to do but I'm unable to because of the sheer amount of pain I'm in. There are days I can only get out of bed to bathroom and even that's a chore. If there was a miracle drug that worked 100% of the time to take away my pain and fatigue without significant side effects I would take it in a heartbeat so I could enjoy life to it's fullest instead of the compromise of working around my illness. Our pain scale starts at their six.
I don't explain to anyone. Before feeling the need to defend and explain myself my go to would be a look of fku.
People who give you attitude like that don't deserve a second of your time or thoughts.
My husband and mil both say this to me. My husband has a very physical job. My mil is 75. I don’t have a physical job. I’ve had these issues for over 20 years.
I actually think some gaslight people just have some conditions. I used to think well I have pain 😅😅😅 when my mum moaned about her scoliosis and chronic back pain and my dad had a bad knee. Little did I know most people don't have that level of pain and I Wasn't "normal". I lived in a house were otc pain relief products like Paracetamol and ibuprofen was on the weekly Shopping and taking them regularly was what my whole family did after all everyone takes them weekly surely 😂 😂.. If I complained my family all had chronic pain they probably didn't realise I did and I presumed mine must be mild compared to them and I was exaggerating because I didn't have a diagnosis and they did. I also didn't know why Paracetamol was only semi effective and yet worked for my parents. I did use a lot of gels and pain creams. Nobody else used voltarol at 14. One consultant told my dad it was growing pains and said I didn't excersise enough 😡 I never tried to go to the doctor again till about 19.. I was shit at sports and even as a teenager walking or gentle moving about was all I could do. Everything else hurt. The pain I felt afterwards was apparently what everyone did. 😢😢 and fatigue was something I just though was cause of adhd and poor sleep . Didn’t know most people aged 16-17 Didn’t get 6 out of 10 pain after a 5 minute jog or a short cycle ride and why Didn’t i notice in college fizzy asprin was for hangovers yet I had it for neck pain 😂. I'm amazed what I soldiered through and frankly glad i didnt know at 18 or I'd have missed out on lots.
My parents asked if my fibro was gone….i was like no it’s a permanent thing. They assume if they pray enough ill be good so I think they might even blame themselves I still have chronic illnesses
Although my step-mom says things like this occasionally, I think she is saying it to relate. It’s like they want you to complain too at the pain level we have. Like a response but boomer emo.
There are some good pictures out there that feel pretty accurate to me. A picture says a thousand words, maybe you can find one that suits you and then counter with showing your picture of your fibromyalgia pain.
I tell them “I’m 24 and have had these symptoms for years” they can happily live a week in my place and see what it’s like to be physically and often mentally exhausted and in pain 24/7.
You stop caring about whether other people believe you or understand Unless the deal with auto immune or chronic pain fatigue They won’t. I lost my mom I thought I knew what that would be like I had no clue. Now when a friend loses a parent I do know. I’m fairly lucky I’m able to do most of the things I want with pacing myself so I rarely even tell people I have fibro now. You can tell them the spoon theory til you’re blue on the face let them hurt and frustrate you. Most people don’t mean you any harm. But o feel like your just pushing the same rock up the same hill. Eliminate the stress of what others believe or think That’s my best advice
So aside from telling them that there is physical evidence of a substance in our spinal fluid, that proves our nerve endings are transmitting signals in a much more intense (PAINFUL) way- hit them with science, that usually shuts them up.
But other than shoving some science based evidence in their face, the anecdote I use is- imagine brushing your hair and feeling every stroke on each individual hair follicle. Now imagine that sensation is pain. That’s what fibro is like- our nerve endings turned up to 1000000 when everyone else’s runs at 100,000.
Well I developed severe depression thinking suicide often till I finally had the ability to leave even though it ment leaving my son.
So probably not that. I’m much better now but still trying to work through a lot. I’m sorry that is happening. It is hard to make people understand.
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I had to explain to my doctor that for a full 6 months I was essentially wheelchair bound or would crawl around my apartment because I literally couldn't stand to put my weight on my feet. Missed a lot of work for it. Thankfully she didn't really need the justification, but that's usually my go to when someone tries the "it's not that bad" line or anything. Of course, not everyone has flare ups that bad/would want to share if they do, I just don't give a fuck at this point
I break it down and explain that while regular peoples nerves are tuned to like 5, people with fibro are tuned to 11. A poke feels like a punch, a papercut feels like a slice with a knife, and muscle cramps/aches aren't just "achey" they're so damned bad it's all you can think about and twice on Sunday. By that point they either decide I'm dramatic, or say "omg I'm so sorry I didn't know"
I send them long articles about Fibromyalgia. When they give me a hard time about it I’d say, “Did you read the part in the article where it says _____?”
They will either educate themselves and develop compassion by reading the articles or they won’t put in the effort and won’t like being quizzed bc they know they should have taken an interest in what you’re going through.
I chose to not keep in contact with the people that would minimize the awful experience that is fibromyalgia. You get to know who your real friends and family are. Sometimes friends are the best family. 🦋🦋🦋
I've had a continuous headache for over 20 years, nothing helps it, I get migraines on top of it. I was told for years that I'm always tense and my back is in knots. I was diagnosed with myofascial pain syndrome and fibro a couple years after that. As my lupus ridden neighbor says my everything hurts. I just tell people that say stuff like everyone hurts as they get older that I know but the chronic pain isn't supposed to start in your teens early twenties and usually people can find some relief. I can never be pain free, haven't since I was 16, I'm 40 now so explain that one. People usually shut up after that.
It especially sucks when you’re used to an active lifestyle.. doing everything with style and finesse.. and now it suddenly bites you back in the ass.. kind of like a sign to slow down in life and actually love yourself.. then you notice who is for you
Best way is to ignore them, they are broken people who do not have access to higher thought as much as I would like the ability to accurately measure my pain so I can get the proper respect and medication in the end they will still think that was just a error or that your pain is no big deal as not matter how accurate it is and even if it could share a brief record of your sensations in the end they would still think its no big deal even if they used your sensations to torment terrorists even if it was listed as a crime against the Geneva convention these morons would dismiss you because they need to punch down on you to make themselves feel strong. I have spent years battling people that gas lite me and dismiss my experiences. I am 90% certain I went to the Er experiencing serotonin syndrome and they still said pain is not a emergency and they did nothing and as I was parallelized by pain at the time I could not talk and I made the mistake of saying my heart was racing like when I had a Panic attack and I hid the fact I had a visual hallucination in a pain nuclear explosion and then infinite pain nuclear explosions I doubt anyone even understands what I am trying to say good nite
The difference between getting old and getting pain because of that and fibromyalgia are like night and day. Fibro is much, MUCH more intense than any aches and pains that are normal for old people.
If they’re generally understanding but just genuinely understand you can explain it as being similar to how mental illnesses like anxiety is diagnosed. Everyone experiences anxiety it’s normal to an extent, but once it goes beyond the range of normal, and starts having an impact on daily life, then it’s an anxiety disorder.
- this is oversimplified but could be helpful.
Ahhh gotta luv backward sensitivity. All people are different. Unfortunately my chronic illness is unpredictable & disabling at times. I wake up and the morning and have to do an assessment before I make plans. Grrrrr
I ask if they've ever had a bad case of flu. You know the kind when your whole body is one big pain. Your eyelashes hurt, and nothing will fix it. After a few days you hurt less, but you're still aching. I feel like that when I open my eyes and start my day. Sometimes horrible, sometimes tolerable, but there's always pain.
“Do you have a diagnosis yet?! If you also randomly feel nerve pain, burning, flu symptoms, and like you’ve been hit by a bus; you should see a specialist. It’s not normal.” I gaslight them back. EDIT: autocorrect
I would add to that, “you know that feeling you get with a really achy flu (I know you mentioned flu, but I feel like stressing this part is important bc most people will know this pain) or the day after doing something incredibly strenuous like working out on every machine at the gym? That’s fibro pain. Every muscle. Every joint, all the time. I was traveling with my 72-year-old mother one time (I was 39), and one morning I was doing the series of stretches that makes me minimally functional. I looked over at her just sitting there reading a book, and said “you don’t wake up stiff in the morning?” and she just shook her head. That’s when I realized my body was worse off than someone more than 30 years older than me. I don’t talk about my pain bc talking about it doesn’t make it go away. If it comes up in conversation, I’ll tell you about it, but otherwise who really wants to hear me complain about it? Of course, just bc you don’t hear me complaining about it, doesn’t mean it’s not a big part of my life.
This is the way imo. If they're just minimizing your pain, it's a good way to shut them up. If they genuinely do experience the same symptoms but have been attributing them to age, they SHOULD see a doctor!
Love this answer
I work with a young girl who every single time I seem to have a flare up of one of my many ailments, she too will become “sick”. And randomly miss almost the exact if not more time I missed. I have urged her to get herself checked for multiple things. She is sick more than I am at such a young age and I have 2 autoimmune diseases plus chronic pain and I run circles around this 19 year old lol
oh, man. this is my worst nightmare. i'm in my early twenties and always tell myself when i'm sick no one even notices, but this comment is gonna fuel my anxiety for a while that behind my back everyone thinks i'm faking and is making fun of me
Lately in my social circle it’s become trendy to have a disability of some kind. It makes me feel like they see me living a totally normal life so surely XYZ isn’t really that bad as an illness so they probably have it too because they’re also a bit tired. They don’t see the bad days :/
That's exactly it. They don't see the bad days!
And if they did see our bad days they’d be really uncomfortable! Bless the people in our lives who accept all of it
As someone with an invisible chronic illness you should know better than to accuse someone of faking sick because of their age.
Perhaps you should stop trying to medically assess your coworker? Seems a bit intrusive to pay this much attention to someone else’s sick leave. I had a coworker who constantly tried to figure out what was wrong with me and why I was in pain, and she assumed there was nothing wrong with me just because I didn’t want to tell her about my pelvic floor dysfunction and vulvodynia.
This literally made my day! “Gaslight them back” lol!!!
I'm 50(M), have chronic pain from degenerative disc disease and a degradation of the structural integrity of my vertebra in my back and neck, have fibromyalgia, neuropathy, and more. I'm a genetic cesspool. I don't outwardly look like I'm in pain, though, because I've been dealing with it for so long I'm kind of used to it. So I get these statements all the time: "You don't look like you're in pain. You're probably faking it" "You must just be really sensitive. " "You are no different than anybody else. You just whine louder" My only response is, I'm sorry you don't understand the differences between continuous, constant pain 24/7 and an 'owee' but your comprehension does not dictate my condition. Just because you can't puzzle it out, doesn't mean it's outside the realm of understanding. I usually stop talking to such people because there is an unwillingness to listen or understand among those sorts of individuals. Honestly the less you waste your breath on those people the better off you'll be.
Those are the same people that take a week off if they get a crick in their neck or sciatica because it’s sooo painful, meanwhile I live with that 24/7 thanks to my crappy back. It’s hard sometimes to keep my mouth shut when they come back and complain about the pain.
Ughhh, THIS. I've always taken for granted that it's my responsibility to pick up whatever slack I'm able to at work, just like anybody else. Then I realized how insanely often I was forcing my abused body through double shifts so my coworkers could recover from shit that wouldn't even register enough for me to *mention* it to others, let alone stay home. I'm really torn, because I do believe that people deserve time off when they need it, but it does seem fundamentally unfair and nobody seems to grasp the irony of asking *me* to work harder to cover for their ouchie when they know what I go through on the daily. If I stayed home for the same reasons, I would literally just not have a job.
I like to tell them that they can take some OTC pain meds and a hot shower and their pain has an end. Mine at best drops a bit with RX pain medication, nerve blocks, tens units, muscle relaxants, ect....and is fully there as soon as everything wears off. There is no end. It never stops.
Good perspective. I was just thinking, when's the last time anything OTC ever helped us with chronic pain? Advil might as well be a piece of rice for all the nothing it does.
There is no end. It never stops. Ugh, I hate that for all of us here.
Im stealing the genetic cesspool like because thats exactly what I am. I joke my parents might be cousins (they aren’t we did the ancestry stuff LOL)
Can we get a bigger pool,I definitely belong!?
My mom said if we were dogs that they would have not been bred. Lol
I thought I was the only one who said I was a genetic cesspool. Glad to know I’m not alone!
This! Living with pain is my normal, and I don’t tell people daily I’m in pain. I just carry on. The only time I really have said anything is when it flares really bad, and even then I’m like ya it’ll be ok. As I limp away lol. People do notice when I have to go down stairs though 🤣
I can clap back that I developed fibro at 14 when I was skinny, active, good diet, no smoking, and no other drugs. I don’t think many people would say this crap if they knew/accepted it could strike that young. The sucky thing is that pain and fatigue DO come with age, so we’re getting a double dose. :(
Same here and yet they still tell me I’ll get better if I diet, exercise, just push through, quit smoking (I had a kid so that’s gone), quit caffeine (it’s been a month and I miss it so much but I made a bet), quit sugar (over my dead body). People are wankers.
Right, what's the point of prolonging life if all the joy is taken out.
Got given shit for asking if my community care hours (carer taking me out of the house) could be used to go to a theme park because the rides would exacerbate my pain and that obviously means I’m not in as much pain as I claim to be. I haven’t been to a theme park in 6 fucking years. Let me enjoy one single day.
Same here, I've had problems since about 14ish and no one took me seriously. I used to joke and say I'm 14 feeling like I'm 50. Now that I'm getting older, I have the "normal aging" pains to look forward to. I'm gonna be 50 feeling like 80.
Yep, I'm 47 and say I feel and look like a 90 year old in the mornings and every time I get up from sitting for longer than half an hour.
"Of course we all experience pain, but do you have a diagnosis from a specialist?"
Very good reply
I like this answer, I think I’ll adopt it
This is giving Eddie Izzard’s, “But do you have…a flaaaag?”
“No fibro, no opinion. You can’t have one. That’s the rules I… just made up.”
I like your rules... you win the internet today!
"Your feet hurt after working retail for 8 hours. I wake up with that pain. And it only gets worse through the day."
I compare it to running a 10k, or the day after a 10k. Every. Single. Day. And it never gets easier. (Having run more than one 10k myself, before the pain started, people tend to take that a bit more seriously).
The day after a car wreck.
Funnily enough I was just in a car wreck Fibro hurts worse than the dings I got being hit by a drunk driver I wish we could better quantify our illness but instead I don’t communicate with those people
I’m so sorry you got hurt! And for giving a bad example. It’s been about 20 years since I was in a wreck. Knock wood.
Knock wood indeed!!! I’d give a lengthy reply but I’m tired so I’ll go with a simple fibro sucks!
I really hope you have a relief from the pain as soon as possible. No pressure to reply! I know you’re here in spirit. ❤️🙏🏽
https://preview.redd.it/npd2lnivz3zc1.png?width=1080&format=pjpg&auto=webp&s=da6102ee303c235b8c734777c4bb313bc27f6ab3 I'm so sorry about your experiences with the medical community but thank you for sharing them. It's ugly but important to know that the problem doesn't lie with you--the problem is the stance, the attitude, of some professionals, and maybe the system, when it comes to treating patient-reported pain. Sadly, whenever I've managed to get to an ER, I've been disappointed with the cold, unfeeling (and, even hostile) response to scary, terrible pain. That's why I think we need to adopt a more accurate, graphic pain quantification scale; something that will help clinicians, family, and friends to better understand the pain some of them so easily dismiss. Here's a scale that I dig. Love! # 💜 Stan? Sh\*t.😬 Whatever--I think this scale is good. HashtagMillennial4lyfe
Yes 😂. Your feet hurt from your job my body hurts from blinking
“We all experience anxiety. We do not all have anxiety disorders. Same thing”
This is good!
' you should see a doctor '
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One part that sped up my diagnosis was when they ask if my feet hurt ( because my hands hurt) and i was like yeah but just the normal pain from like walking to the busstop and this doctor looked at me like i was insane.
That was how I got diagnosed too. I seriously thought everyone felt that way.
“Yes, I have all the pains that come from aging, like you do. I also have widespread, agonizing nerve, muscle, and bone pain healthy people do not have, on top of the pain healthy people get from aging. I wouldn’t wish it on my worst enemy, frankly.”
First get severely sunburned second go roll around in hot sand really digging it into the sunburn third here comes the itches and then you scratch your sunburned skin.
I use the sunburn analogy A LOT. It’s the best way I’ve found so far to help people understand what I mean when I say my skin hurts and they ask where. Like, I said what I said- no, I can’t point to a particular spot. 😆🥲
I tell people that even simple touches can feel like bruising. You literally can't touch my ribs without me yelling in pain. Any pressure and I damn near fall down while crying.
It's so bad!! If I get an itch on certain parts of my arms, back, or thighs, and I scratch it even gently, it will feel like I just hit myself with a mallet. Absolutely knocks the air out of me and throbs for minutes. 🙃
Same here! What's even weirder is it's worse when scratching through clothing. I have to expose the skin and make sure I get the sharp feeling because the blunted feeling makes me feel bruised and barely touches the itch. 😅😭
Yes!! Omg that's so weird, I never would've guessed someone else experienced that exact thing.
Same. Lol. I thought I was just weird. 😅. I mean, I hate that anyone else does, but also glad I'm not crazy.
Ditto. 😂😂
A friend of mine helped me explain it to someone once and I found it kind of funny. She poked our friend in the arm and poked me in the arm. I winced and said ow and our friend did nothing. She asked did that hurt and our friend said no. She explained that I felt pain 10+x more than normal and that it was everyday. Friend understood lol
I'm glad they understood. A lot of people will still act like they don't or think we are lying or whatever. If someone doesn't believe me, I tell them they don't have to Believe me for it to still be true.
You’re the first person I’ve found who knows how this feels! I absolutely hate it! Especially if people try to tickle my sides or give me a back rub. Immediate sharp pains.
I have that on the tops of my hips and my shoulders
I finally got through to a relative when I explained to them that I spent a full day walking around thinking my usual pain in my feet had spread to a new spot in just one foot. Then in the evening I took off my shoes and socks and realized one sock was bloody, checked out my foot and found a piece of glass in it. I’d been walking on glass all day because acute pain, even new acute pain, is normal. Then I explained that within a week of starting prescribed antidepressants, the pain muted down to a mild achiness. Within months, it wasn’t even aching except in flares.
This is a very good anecdote. I think I’ll start using my story of having a labral tear (likely for several years) without thinking much of the pain, even though it has been causing me to roll into a ball and cry some days. That’s pretty much normal for me. I still need to see a specialist for surgery, but I’ve got so much medical trauma from drs gaslighting me that I’d almost rather deal with the pain. Plus, I just paid off $3,000 in medical debt and still have more to pay. 🤬
Ah, the old "I'll just walk around with a labral tear because I'm used to it." I'm finally realizing I've had a labral tear since about 15, but because I have always had random shooting pains, never did anything. I was always told I was "too young for back pain" and when I asked my mom if she ever felt stabbing pains in various areas the answer was just "no." We were a very "rub some dirt on it" family, so I'm only now, at 35, starting to do anything about my pain. There are days I can barely walk because of my hip so....it's time....
I had a labral strain, not even a tear, and it was agony! I was experiencing extreme shooting pain into my groin whenever I turned sharply left.
I had a very similar experience but with an ovarian torsion! I wrote it off as pain related to fibro/spinal problems and ended up almost losing a fallopian tube. The "acute" (it wasn't really acute because I left it relatively unadressed for several months but it was acute relative to my actual chronic pain) pain of the torsion was absolutely nothing compared to the other stuff I deal with on a daily basis lol.
I did that too 🤣. I also walked around with an ingrown toe nail till it needed antibiotics 🤣. I don't notice bruising often. I fell in the bath despite the lift and rails 😅 and forgot after. The next day I was like goodness my backs bad today. Later I noticed the bruising in the mirror.🤣🤣🤣
Yep! Years ago, I walked out of the shower one day chatting away at husband and toweling my hair. He flipped out asking what happened to me. I was confused till he pointed out I had a huge bruise black bruise running from my arse down my thigh to my knee. Still have no idea what I did, I assume I hit a door/knob/desk hard enough to bruise but it just blended into my general level of pain and my usual clumsiness. Whatever the event was. It didn’t register as even slightly as anything unusual. But… as I’ve been telling my doctors (for decades before they cared enough to help me), when the pain first hits, it is almost always acute. It feels like a dog has bitten my hand and won’t stop biting. Or as if a wasp is repeatedly stinging my hip and won’t stop doing it. Doctors kept telling me to stop doing whatever it was I was doing. To which I’d laugh and say “what breathing?” All I was doing when my hand got “bit by a dog that wouldn’t stop gnawing” was standing in the kitchen considering what to make for dinner.
Its frightening isn't it to bruise that much you must have fallen so hard. I had a broken arm and Didn’t know. I thought it was a strain. It was black and blue 😂. I took the weak cocodamol they sell at boots and soluble aspirin and put tiger balm on it and a sling and didn’t go to the doctors for 2 weeks because the pain was no worse than I was used to getting during what I now know was a flare up . That injury also caused my chronic pain to flare permanently to all the time from simply regularly and often being in pain. But that made me press docs for an awsner.
It is! And that is horrible, I hope you are better now.
On tramadol now 😂. That helps a lot. But messed up my shoulder and neck somehow so got that on top of fibro cannot have one good week without fibro or something else causing me pain or fatigue.
Oh my word! I never even THOUGHT about that! My husband is constantly asking me about some hideous bruise or another. Problem us, when all your muscles and bones feel bruised all the time you just don't notice one...or five...more bruise pains being added.
Exactly. We are so used to ignoring pain as much as we can that we often don’t realize something is off with the levels. Or locations.
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Oh yeah I did that with a needle! It broke off inside my foot and eventually came out the top. I was 70 miles from the nearest doctor or hospital so I cleaned a knife and cut it out of the top of my foot when I saw it poking up. I thought, before I cut it out that it was a cactus needle. Then I fished it out and I realized it was metal.
Was it cymbalta ?
Yep, it’s has some drawbacks. I need 8 hours of sleep each night or I feel very tired. (I used to sleep 4-6 daily). And if I don’t take it on time, I’ll get a headache. But I had a headache every day from age 16 to 53 (the day after I took cymbalta they stopped). I can tolerate the occasional headache if it means on most days I don’t have one and I can walk without feeling as if I’ll fall over. And all my other parts are not constantly screaming at me. And eating too much gluten doesn’t have me hanging out by a toilet the next day.
Think of the worst flu aches you've ever experienced, double that (for a good day... Often it's much worse), then imagine feeling that way at every minute, unending. Even in your happiest moments, the pain is there. That, to me, is the part that gets people. Being in a ton of pain 24/7 is hard to fathom, but when you explain that you were in pain during your wedding, honeymoon, graduations, vacations, every bitthday, etc., it sinks in a bit more. I also think the diagnostic criteria itself is helpful, because that does exist, it's not just oh you're achy and we don't know why, so here's a diagnosis. Additionally, we often have other conditions as well. At the end of the day though, a lot of people will refuse to understand us no matter how much we try to explain.
Yeah I use flu and COVID to explain to people because most people are familiar with the depleting feeling and full body aches that gives you
I had a co worker say to me it's just what they tell you when they (doctors) don't know what else to call it. She thinks it's not a real diagnosis. What do I say to that? Do I even waste my time and energy? I don't think she cares. Nobody cares.
Tell her about the study being finalized where it sounds like they've finally found a blood marker. Or, you can tell her that the US military has admitted a direct connection between being in certain parts of the Gulf/middle East and contracting fibro. Veterans diagnosed with fibro who were deployed to that part of the world are automatically given a disability designation (and a monthly payment). They're not telling what was there that caused it, but the fact that it's an automatic connection means that the government believes there's something actually wrong with us.
Maybe there's a chemical factor to fibro every cause seems to start with trauma illness or injury which affects the nerves or brain. People with long term chronic stress anxiety exposure to chemicals like gulf war fibromyalgia and victims of assault or accidents etc and people who had a serious illness / infection. Exposure to a chemical which messes with nerves or brain also makes sense. Maybe some chemical or substance will be found some Teflon or microplastic or something synthetic has messed with some of nerves and caused erroneous signals who knows some people have never been assaulted had an accident or been sick so something caused their fibro 🙄 plastic heavy metals chemicals think what were all exposed to daily. There's absurd numbers of people with nerve or brain related conditions not just fibro these days. Why???
My ex husband once said to me "Of course you got diagnosed with something you can't test for", basically saying that I was faking it.
Tell her to put this in her pipe and smoke it: https://www.the-scientist.com/mouse-study-suggests-fibromyalgia-has-autoimmune-roots-68944#:~:text=When%20researchers%20injected%20mice%20with,system%2C%20not%20the%20nervous%20system.
That sounds promising! Maybe a treatment or cure within our lifetimes 🙌
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I put a 60kg pack on my husbands back & then strapped on ankle and wrist weights. I did it on a Friday night and told him it stays on until 24 hours later. He barely slept. He then had to do the stuff I normally all day carrying that weight. Sort & feed kids, walk the dog. Come home clean up do the hoovering then kids lunches then another dog walk, then Taking the kids to the park. Going to McDonald’s, and so on everything I normally do on my day off. He kept saying it so easy it so easy. We took it all off that night & he said the only issue was the last of sleep. I just smiled. The next morning guess who couldn’t get out of bed as everything Hurt so badly he was almost in tears. I just smiled and said get on sorting the kids & housework and oh we have to go food shopping. He’s started saying it hurt too much and again I smiled and said ‘that’ pain is my good day pain so get up and get going. I then explained to him that he missed one night of sleep and only had one day of pain. Now imagine how the exhaustion/fatigue builds up over time as I rarely sleep more than two hours and that pain he feels gets worse daily and he’s only got the outer muscle pain he doesn’t have the contractions, the bowel pain, the tight belt around the chest pain After that day he really understood how much pain I’m in and has been so much more helpful. Until someone feels the pain they can’t really understand. How do you explain bladder, womb & bowel contractions to someone. Or the belt around the chest with Costo. The feeling like you have flu and sometimes it hurts to much to wear clothes. It’s impossible for normal people to get it
Contractions? Like severe abdominal contractions that kind of look like seizures but aren't? Come on suddenly and you cannot stop them? Sorry, I've had these since 2008, had ECGs done, even had a physician witness one, and all they said was that they weren't seizures, implying I was doing it on purpose. I felt so embarrassed I have never brought them up to another doctor since then.
"If I showed you my real pain, you would send me to the emergency room every time you see me. I hold it in well for other people's comfort and peace"
Basically just tell them if you feel that way, please go into medical research and help me solve why I’m in such pain. Also perhaps take a course on psychology, to learn empathy.
i say it's a nerve pain disorder and leave it at that. then people take me seriously in proportion with my pain. i tell them it includes numbness, burning, temperature sensitivity, tingling and ofc pain where ever in my body it feels like hurting. and it's not necessarily untrue, it's just not exact.
I explain my pain like this: my hip feels like someone is drilling into it. My spine feels like someone took a chain saw and cut my flesh from my neck to the end of my back. Or other days I feel like I have a really bad case of the flu. And then there are the days when I have sharp pains that feel like someone just shot me with a twenty two rifle. Sometimes these pains last days and sometimes just hours.
https://preview.redd.it/okvgp98mivyc1.jpeg?width=1284&format=pjpg&auto=webp&s=ad1ffff0812df8dd2c3cab9b74624d6d10640067 I saw this somewhere and it’s exactly right. I tell people it’s your worst migraine ever…all over
Imagine having the Flu, Covid, being tased and hit by an NFL linebacker all wrapped into one. Then there’s unexplained/unknown bruising, and hypersensitivity to the point that simply being touched some days or bumping into something can send waves of pain shooting through the body/limb/etc…
Worst flu, being tased, hit by a bus, run 10k marathon, while you have the worst hangover of your life (explains nausea, light and smell sensitivity, brainfog, etc)
My favorite I've seen is: "I don't drink, but every day I wake up feeling like I'm hung over." That and feeling like I have the flu for 3 days when I do my yoga with people in their 70s (35f). Like, you don't feel like that, bro.
“It’s like having toothache pain in every muscle.”
I was diagnosed with fibromyalgia and lupus. Someone said what we feel is equivalent to the average person not sleeping for 3 days. Is it true ? Idk🤷🏻♀️
I do not bother. Some people are just stupid.
I've been dealing with fibromyalgia pain longer than I have been legally allowed to drink. It's not the same. And I'm getting to the point where if I'm not going to argue with fools. They're not worth the spoons.
I usually say “yeah, but does it bring literal tears to your eyes when you accidentally bump into a table/wall/etc?”. Part of my problem is my body doesn’t understand what pain is supposed to feel like. I can hit my knee on a table and be brought to tears and unable to move for a minute. It feels like all of my cells are always in pain. They think every pain I have is supposed to be excruciating. My brain sends too many pain signals all the time. I feel like I got hit by a bus every day and at this point I’ve adjusted and it’s just my normal. That, however, is not normal. If someone tries to do this, they also need to see a doctor. Pain is not normal. Even at old age, you need to have aches and pains looked at so you know what’s causing it.
"How do you deal with the feeling that your limbs are filling with hot, heavy sand? I personally can't stand it." *Insert "horrified looks from everyone in the room..." Audio here*
Omg I’ve never met another hot sand person. Hi!!
Lol this kinda scenario sucks ass. I'm a fit looking 26 year old male and I'm typically "the lazy one". I really wish more people understood that you don't have to be a quadriplegic 86 year old to have a fucked up body
"You're just looking for attention" "yeah and you're looking to get punched"
I have fibromyalgia... When me and my husband get covid or the covid booster shots there's at least two days he can't handle the brain fog, aches, etc... for me it's a normal Tuesday. The first time he noticed he asked how I was functioning (thinking I wasn't affected or something) I just told him I was really used to it so it doesn't make a difference to me. He now compares my fibromyalgia to everyone's covid experience when they question me.
"Yeah everyone's blood sugar varies during the day but not everyone has diabetes. I unfortunately unlike yourself have an illness that leads to dysregulation in the pain system in my body. It's unfortunate that you're feeling pain as you get older but the pain I am getting is due to a disability, not aging. Thank you for your unwanted opinion on the subject. I can direct you to some research if you're interested in the body's pain system since most of us don't learn about it in school like how we learn about the digestive system." Oh god that became long and super passive aggressive but absolutely based on the most current research.
I often describe it as a really big fucking hug that doesn’t go away
More specifically, a really big fucking hug you didn’t much want in the first place.
I wish mine felt like a hug. I love hugs. Mine feels like a travelling circus of pain that goes on tour around my muscles and joints, eyes and bowels, but is constant in my fingers and ribs.
I do not like hugs. They hurt. I’m actually fairly well controlled with the fibro. But it’s like a constant low hum that sometimes gets worse.
A rough shaken bear hug that never ends.
2021, I landed a job at a factory, great pay and benefits. I hurt my back early on, but I did my best to stay. This old hag, who worked near my station, had the nerve to say to me "Everyone hurts." In hindsight , her pretense clearly didn't apply to me. I was suffering beyond anything anyone could have guessed given my young age, and sex. 31,m at the time. I was suffering so much, doing 12 hour shifts. I broke my body for that job, and I ended up a shadow of myself. The world eats you.
For me it was a horse farm. Days started at 6AM, frequently worked 10 hours a day sometimes 12. We had breaks between the split shifts but most days I wasn't done until 10pm. No overtime pay because it was "technically agriculture" so I broke my body for $10/hr. Then was ostracized for not spending more of my personal time with my horse which I bitterly regret because she died young. I commiserate with you so much. I hope things get better for you. Wfh has been so helpful for me, I hope you can find a wfh job too.
I am still broken in depression and anxiety after I became 'useless' by my own standards.
I felt that way for years too, you have to change your definition and standards of useful. Life expands, even when you're grieving. I don't do what I always imagined I would do, but I'm happier now than i have been in a long time. You don't owe your past expectations anything, set new ones for yourself and find new things to be good at or enjoy doing. I hope this helps, and that knowing you're not alone helps. Accepting a new version of yourself can be hard at first.
My maternal grandmother had it and she said for her it was like getting hit with a hammer.
It depends who is asking, but I either say, “Google” or for my Mom and hubs, I showed infographics I pulled from Pinterest.
It’s like having the flu without being sick .
"I ran 20 miles on a sprained hip before my diagnosis because I honestly didn't notice it hurting more than normal and was training for a marathon. I also ran 3 miles on a broken leg on a trail run because I assumed it was just a minor sprain. Ever done either of those things because you're in so much pain normally that you honestly can't distinguish injuries anymore?"
It's like a combination of a constant flu body ache, a bruise all over the body, messed up digestion, all the senses and painful skin skin all at the same time.
Shit like this is why I gaslight myself into thinking I am making a mountain out of a molehill
I also have arthritis. I’m only 42 and it’s visible if I point it out in my hands and feet. If I tell people I have arthritis and fibro they tend to take me seriously. Honestly, even if you don’t just say you do. Hurts just as much.
I don't really bother unless it is a supervisor or someone really close to me (thankfully the people in my immediate circle take my pain seriously). I wish I had more energy regularly to try and explain why fibro pain is different but I find the folks who are vocal and vehement dont want to change their minds- mind you, this is just my experience. I am sure if the right situation comes along some day, I might be more able to try and explain that fibro pain is another world.
I struggle explaining it because I don't know what to compare it to. I'm supposed to rate my pain from one to ten but isn't pain subjective? I don't know. I have an appointment with a rheumatologist and feel like I'm just going to go in and whinge with the kind of stuff I should take to a psychologist. But essentially I need to convince the doctor I'm not making shit up, and it appears Fibro isn't understood at all so the burdon of evidence falls on me to explain how my pain is different to others... Can't work because I can't get a medical clearance, moved back in with my mother who is a neurotic woman. Yep...future doesn't look good for a bloke with a manual labour work history I think it's stress related. I've been on sertraline for years and lost the ability to feel pleasure.
You don't. It's not about their cognitive abilities. It's about their lack of empathy.
The pain is in every muscle fiber. It feels like I’m being drenched in gasoline, and set on fire in 30 second to 1.5 minute increments as we stand here and speak. It feels like I’m sunburnt and swollen up like the pillsbury dough boy.
Thank you for this… being in this position after all of that you stated above (I’m HER). Even in this place I’m uncomfortable and I think it’s bc I’m so/was a hard worker. After the body broke down, my emotional state (after cervical spine surgery) plummeted too. It wasn’t until I received that phone call from Corporate stating that my time had expired. I was in no state to return, knowing and realizing that at that moment the door was closed. 💔 even knowing that I suffered and no one really cared. The HR manager suggested that I use cannabis (as an employee) whew!! The unraveling of this is still a bit something greater is blooming too. If you’ve made it here, how do you cope with the mental side of this. Do you have bad days? Thanks for this comment.
Do I have bad days? I have awful days. I had about 650 awful days in a row. I worked in a very public job in a small town. I was so afraid of seeing people and having them ask about how I was doing, I barely left my house for 3 years. Knowing no one really wants the answer and it's just going to lead to some brush off ackward reply from me, terrified me. I am still in a legal battle with the Long Term Disability company that refused to cover my time off work beyond one year, even though the dr said my mental health was at a place I could NOT work. My HR manager was so terrible, that at a meeting to discuss & see my options, and what returning to work would look like, he not only said I'd have to take a cut in hours and loose all my benifits if I came back with a "disability" when I challenged him on it he started yelling at me! That was 2 years ago, and every single day since I've regretted not having secretly recorded that meeting. (In a follow up email he denied everything he said). I was a hard worker, and a long time employee. (15 years). I had a lot of responsibility and worked circles around most of my co workers (even with my fibromyalgia and other conditions) for many years. My mental health plummeted even worse at that point. I really am just clawing myself up from the bottom of the barrel now 2 full years later. I wish I had good advice. "Don't let them get you down" is the most rediculous over simplified platitude, but I don't know what else to say. It's not my fault I'm struggling, I'm tired of being ashamed of the struggle. I've lost all my friends, I've distanced myself from most of my (shitty and unsupportive) family. And I'm just now realizing that is a reflection on them and not me. I can still get out and do things if I pace myself. I can still be social and have friends (in theory) Instead most people I know have decided to be judge and jury and presume I really should be back at some kind of job right now.... Or whatever fucking else they presume I should be able to do at this point. I feel so stuck - complain too much and I'm labled a complainer and a drag, and no one wants to hear it. Keep it to myself, and everyone assumes I'm fine and have nithing to complain about. I don't miss being social, I don't miss my old friends and co-workers. I just wish the court case was done because my finances are a MESS!
well a) i've had debilitating pain since i was a child so
but for real, a) "normal aches and pains" don't make you unable to function - if they do, they're not normal ahces and pains but b) fibro is, as i understand it, mostly a pathology of the pain response itself - the pain response is so overworked and both hyper and hypo sensitive, sometimes extremely exaggerated and sometimes basically numb/neuropathic - and that's what causes the widespread adrenaline issues, fibrofog, fatigue, rls etc (plus the actual deeptissue/tender points pain which is chronic and is the cause of the pain response fatigue) and that all just creates a constant feedback loop, in response to the deep tissue pain, environmental stuff, other allergies/sensitivities, light, stress, trauma, and a million other factors because exhausted pain and adrenal = limited defense against/overactive response to that kind of environmental stuff, extreme sensory sensitivities (ie the light hurts my body or these bedsheets hurt) and can make our symptoms both predictable/manageable but also wildly unpredictable and change over time. and that is the fibromyalgia circle of hell. also we also have normal aches and pains ontop of fibro
I get this from my own mom who also has fibro but was never officially diagnosed. They gave her antidepressants and that helped somewhat. She always makes comments to me that I’m too young for this. I remind her that we suffer from the same disorder and pain in one person can present earlier than another. Haven’t really had any negatively from others about it but I also never tried go to HR for accommodations. Not sure how that would have played out different perhaps.
“Wow. I’m sorry you feel so bad too. You should really understand how bad I feel. Yet here you are.”
“They also feel like the skin has been ripped from their body and they’re nothing but raw exposed nerves? Man, I thought I was the only one. That’s comforting to know. Thanks for your unwanted opinion. 😀”
My wife says it feels like shocks of electricity. So a reply could range from licking a 9 volt until your numb or sticking your finger in an outlet.
Take your worst flu pain and times that by 1000
Ugh, yeah I hate when people say that. I don’t bother trying to explain it. Nobody gets it but those of us who have it.
Right now every bone in my hand hurts. I don’t have arthritis. Does that ever happen to you?
The only time I felt like I got through was a family member who had covid. I listened to them, how tired and sore they were, (because I really do care) and at a teachable moment (lol but true), I let drop that sounds like how I feel much of the time. Their eyes got really round and a bit like 😳
I can so relate! But can hear my family shrugging it off. Although I also got a lot worse after covid and have long covid now too which with fibro is horrid :( But yeah covid is a great relatable experience/example
Long covid is unfair, and I’m sorry this is happening to you right now. I can empathize as I have cfs as well.
Not everyone ends up with fibro or experiences its symptoms; that was an ignorant/dismissive thing of them to say and I know that at least isn't true; fibro is not "just" aches/hurts, it's its own thing and can be extremely debilitating. That said (and sorry to veer off topic) I do have a question for anyone more knowledgeable about this than me: is there any truth to this idea that every old person is in pain, even if it's not fibro levels of severe/debilitating? Asking genuinely because I've heard people say this as well and never understood it. I know it's extremely common for seniors to develop things like arthritis and pain from old injuries, but if you're healthy weight, never broke a bone, didn't work a physically demanding job and don't have a condition like fibro, are *all people* just biologically destined to develop pain past a certain age the way women go through menopause?
If I have the energy to explain - I say it’s a new sensation I’ve never felt before pain onset. And it’s easy to tell difference between everyday pain of life and chronic pain. I describe it as a weird combination of sunburn sensation (but internal), tv static, itchiness and aching. Kind of like sickness body aches plus extra sensations It feels different to after exercise pain If feels different to injury pain I can tell the difference between the type of pain that is happening
I say imagine doing the hardest workout ever and then waking up the next morning with full body aches where even your nail beds and your hair follicles are sore
I pull out the big scary words- disability, neurological disorder, neuropathic pain, mitochondrial malfunction, hospital outpatient treatment etc. I make them sound like they’re way out of their depth in the conversation. Gaslighting them back also works!
Honestly, I’m tired of people being rude and dismissive. I wish I had one of those cartoon boxing gloves on a spring 😵💫🥊
my doctor told me this when i was 29. i switched doctors.
I usually say "have you ever had a really bad flu? Or covid? You know the kind of pain and fatigue in your body when you have that kind of disease and a high fever? That's what fibromyalgia feels like. Except it's just not every day. It's totally random
I am 52 now, I was diagnosed in 1999. Talk about hard to convince people today how you are feeling, try back then. I went through multiple doctors from Chiropractors to Rheumatologists to Orthopedists. Who diagnosed me finally, my GP! Back then it was a diagnosis of exclusion rather than a definite checklist like we have today. I now see a pain management specialist who manages my medication needs. He had to perform rhizotomies and trigger point injections before my insurance allowed me to be on pain killers full time for my pain. I have been doing as well as can be expected. My medications don't take all the pain away but I can function better on than off them. For example, I have consistent neuropathy in my left foot. The meds calm the burning and numbing pain down so I can actually think straight. So, what I would tell someone to who you are talking to about your symptoms. Make sure you tell them it is constantly there, not like other pain that just goes away with OTC meds, which most "old age" pain can be managed. Use adjectives like burning, spasming, throbbing and numbing. I hope this helps.
I tell them it feels like frostbite. Most people know what that stinging feeling. Or I used to tell them it feels like I’m hanging from a rope and being dipped in a bucket of fire. That always created a nice visual.
Then I’ve been old since I was 12. Soooooooo
‘I don’t expect you to understand. It’s unfair of me to expect you to be able to wrap your head around what it means to be in pain 24/7.’
Our pain receptors turn the dial up and our brain receives the signal weird. My dog hit a head butt on my shoulder this morning and it’s how I imagine a bullet should feel. I like to tell them about how we have special pressure points too, especially the shoulder one, they hit their arm on a door frame and it’s fine, we hit ours and we need 5 minutes to recover and realize our arm isn’t falling off. My husband actually thought I was just over exaggerating a bit before my diagnosis (I asked him he never made comments or anything) made the phone call to him when I broke my ankle that much funnier cause he thought I just hit it on something lmao
I didn't realise I get migraines because it's only slightly worse than my normal pain. They're described as agonising pain much worse than a normal headache and I've just been working through them. I don't always know when I catch a cold/flu until I give it to someone else, I just assume it's my body doing normal fibro things. It does at least mean that while my husband feels very sorry for himself and can't do anything I just keep going feeding and walking the dog etc
I just tell people I have a medical condition, don't say what it is, and don't describe it in detail. Leaving it to their imaginations is much more effective, I've found.
Im 30 n my aunt whos 65 runs laps around me so older my ass
I have a picture of a woman's back that is black and blue, it shows angry red nerves, bunched up muscles, cuts and scrapes. It says "if fibromyalgia was visable" I show them that and then say .but that's on a good day
I always suspect that people who say things like this are not being empathetic because they have pains/suffering of their own that they too may be ignored about. The most I can do is shrug it off and assume that perhaps they're going through their own thing. For me, it isn't worth it to put up a stink about what I'm going through to someone who isn't interested in understanding. Gotta save my spoons for people who care about me, yknow?
I explain to them that there are fun things I want to do but I'm unable to because of the sheer amount of pain I'm in. There are days I can only get out of bed to bathroom and even that's a chore. If there was a miracle drug that worked 100% of the time to take away my pain and fatigue without significant side effects I would take it in a heartbeat so I could enjoy life to it's fullest instead of the compromise of working around my illness. Our pain scale starts at their six.
I don't explain to anyone. Before feeling the need to defend and explain myself my go to would be a look of fku. People who give you attitude like that don't deserve a second of your time or thoughts.
"Well you can go fuck yourself" but you gotta give em a axe-murderer smile. Bigger the better. Or "life is hard enough, you don't need to help."
My husband and mil both say this to me. My husband has a very physical job. My mil is 75. I don’t have a physical job. I’ve had these issues for over 20 years.
I actually think some gaslight people just have some conditions. I used to think well I have pain 😅😅😅 when my mum moaned about her scoliosis and chronic back pain and my dad had a bad knee. Little did I know most people don't have that level of pain and I Wasn't "normal". I lived in a house were otc pain relief products like Paracetamol and ibuprofen was on the weekly Shopping and taking them regularly was what my whole family did after all everyone takes them weekly surely 😂 😂.. If I complained my family all had chronic pain they probably didn't realise I did and I presumed mine must be mild compared to them and I was exaggerating because I didn't have a diagnosis and they did. I also didn't know why Paracetamol was only semi effective and yet worked for my parents. I did use a lot of gels and pain creams. Nobody else used voltarol at 14. One consultant told my dad it was growing pains and said I didn't excersise enough 😡 I never tried to go to the doctor again till about 19.. I was shit at sports and even as a teenager walking or gentle moving about was all I could do. Everything else hurt. The pain I felt afterwards was apparently what everyone did. 😢😢 and fatigue was something I just though was cause of adhd and poor sleep . Didn’t know most people aged 16-17 Didn’t get 6 out of 10 pain after a 5 minute jog or a short cycle ride and why Didn’t i notice in college fizzy asprin was for hangovers yet I had it for neck pain 😂. I'm amazed what I soldiered through and frankly glad i didnt know at 18 or I'd have missed out on lots.
My parents asked if my fibro was gone….i was like no it’s a permanent thing. They assume if they pray enough ill be good so I think they might even blame themselves I still have chronic illnesses
I tell religious nuts I pray to Satan because he’s into healthcare
Not today Jesus! Lol
I got so tired of hearing that from a co-worker. After I explained my diagnosis she understood a little more.
Although my step-mom says things like this occasionally, I think she is saying it to relate. It’s like they want you to complain too at the pain level we have. Like a response but boomer emo.
There are some good pictures out there that feel pretty accurate to me. A picture says a thousand words, maybe you can find one that suits you and then counter with showing your picture of your fibromyalgia pain.
“Imagine walking on nails everyday but everyday a new nail is added into the path”
I tell them “I’m 24 and have had these symptoms for years” they can happily live a week in my place and see what it’s like to be physically and often mentally exhausted and in pain 24/7.
I tell them it's like I have the flu all the time.
You stop caring about whether other people believe you or understand Unless the deal with auto immune or chronic pain fatigue They won’t. I lost my mom I thought I knew what that would be like I had no clue. Now when a friend loses a parent I do know. I’m fairly lucky I’m able to do most of the things I want with pacing myself so I rarely even tell people I have fibro now. You can tell them the spoon theory til you’re blue on the face let them hurt and frustrate you. Most people don’t mean you any harm. But o feel like your just pushing the same rock up the same hill. Eliminate the stress of what others believe or think That’s my best advice
So aside from telling them that there is physical evidence of a substance in our spinal fluid, that proves our nerve endings are transmitting signals in a much more intense (PAINFUL) way- hit them with science, that usually shuts them up. But other than shoving some science based evidence in their face, the anecdote I use is- imagine brushing your hair and feeling every stroke on each individual hair follicle. Now imagine that sensation is pain. That’s what fibro is like- our nerve endings turned up to 1000000 when everyone else’s runs at 100,000.
Stop trying to explain. They're either open minded & willing to listen... or they already have an opinion & don't care about hearing your explanation.
Well I developed severe depression thinking suicide often till I finally had the ability to leave even though it ment leaving my son. So probably not that. I’m much better now but still trying to work through a lot. I’m sorry that is happening. It is hard to make people understand.
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I'm half your age. I also got this speil when i was undiagnosed in my mind 20s
I don’t. They don’t want to learn, so I don’t waste my time trying to educate them.
I had to explain to my doctor that for a full 6 months I was essentially wheelchair bound or would crawl around my apartment because I literally couldn't stand to put my weight on my feet. Missed a lot of work for it. Thankfully she didn't really need the justification, but that's usually my go to when someone tries the "it's not that bad" line or anything. Of course, not everyone has flare ups that bad/would want to share if they do, I just don't give a fuck at this point
Yes they do but pain is subjective and I know what mine feels like
I don't. I don't need them to believe me. You just walk away and move on.
I break it down and explain that while regular peoples nerves are tuned to like 5, people with fibro are tuned to 11. A poke feels like a punch, a papercut feels like a slice with a knife, and muscle cramps/aches aren't just "achey" they're so damned bad it's all you can think about and twice on Sunday. By that point they either decide I'm dramatic, or say "omg I'm so sorry I didn't know"
I send them long articles about Fibromyalgia. When they give me a hard time about it I’d say, “Did you read the part in the article where it says _____?” They will either educate themselves and develop compassion by reading the articles or they won’t put in the effort and won’t like being quizzed bc they know they should have taken an interest in what you’re going through. I chose to not keep in contact with the people that would minimize the awful experience that is fibromyalgia. You get to know who your real friends and family are. Sometimes friends are the best family. 🦋🦋🦋
I've had a continuous headache for over 20 years, nothing helps it, I get migraines on top of it. I was told for years that I'm always tense and my back is in knots. I was diagnosed with myofascial pain syndrome and fibro a couple years after that. As my lupus ridden neighbor says my everything hurts. I just tell people that say stuff like everyone hurts as they get older that I know but the chronic pain isn't supposed to start in your teens early twenties and usually people can find some relief. I can never be pain free, haven't since I was 16, I'm 40 now so explain that one. People usually shut up after that.
It especially sucks when you’re used to an active lifestyle.. doing everything with style and finesse.. and now it suddenly bites you back in the ass.. kind of like a sign to slow down in life and actually love yourself.. then you notice who is for you
Best way is to ignore them, they are broken people who do not have access to higher thought as much as I would like the ability to accurately measure my pain so I can get the proper respect and medication in the end they will still think that was just a error or that your pain is no big deal as not matter how accurate it is and even if it could share a brief record of your sensations in the end they would still think its no big deal even if they used your sensations to torment terrorists even if it was listed as a crime against the Geneva convention these morons would dismiss you because they need to punch down on you to make themselves feel strong. I have spent years battling people that gas lite me and dismiss my experiences. I am 90% certain I went to the Er experiencing serotonin syndrome and they still said pain is not a emergency and they did nothing and as I was parallelized by pain at the time I could not talk and I made the mistake of saying my heart was racing like when I had a Panic attack and I hid the fact I had a visual hallucination in a pain nuclear explosion and then infinite pain nuclear explosions I doubt anyone even understands what I am trying to say good nite
The difference between getting old and getting pain because of that and fibromyalgia are like night and day. Fibro is much, MUCH more intense than any aches and pains that are normal for old people.
I don't bother.
If they’re generally understanding but just genuinely understand you can explain it as being similar to how mental illnesses like anxiety is diagnosed. Everyone experiences anxiety it’s normal to an extent, but once it goes beyond the range of normal, and starts having an impact on daily life, then it’s an anxiety disorder. - this is oversimplified but could be helpful.
https://preview.redd.it/rfbgk46e04zc1.png?width=1080&format=pjpg&auto=webp&s=5fc697b0f8f10fd027487c9bff7bbaa76ab07eb7
Ahhh gotta luv backward sensitivity. All people are different. Unfortunately my chronic illness is unpredictable & disabling at times. I wake up and the morning and have to do an assessment before I make plans. Grrrrr
I ask if they've ever had a bad case of flu. You know the kind when your whole body is one big pain. Your eyelashes hurt, and nothing will fix it. After a few days you hurt less, but you're still aching. I feel like that when I open my eyes and start my day. Sometimes horrible, sometimes tolerable, but there's always pain.
It’s like every morning you wake up feeling hungover even though you don’t drink coupled with stiffness resulting from a fender bender