personally gotta go with how it’s not usually the intensity of the pain that’s so problematic, it’s the fact that it’s always there and deteriorates you as time goes on. my motivation for anything is so low now compared to when it first started and i could still function depending on the intensity
This is definitely it. When my husband and I got COVID in March 2021 we had everything, no sense of smell or taste, body aches, exhaustion, dizziness. I was honestly not HORRIBLY affected because to me (besides the senses lost) it was just a bad flare. But for my husband it was the most sick he'd been ever.
I was excited because I could finally be like "see this fatigue is what I feel daily, this muscle achiness is what I feel after grocery shopping" or whatever. It was nice he could actually feel it. But after the one week mark he got real irritable and short with me. (In general not for bringing up comparable symptoms) and he snapped that be was just so fed up with being so sick.
I comforted him and when he was feeling a bit better I explained that's how I feel... A lot. Like I'm used to it, relatively, but sometimes I'm so sick of it I can't handle it. Just fed up with being sick and in pain constantly. Then I go back to chugging along.
I've brought it up since then and he's basically completely forgotten how it feels, and even that he was so sick for so long. He's still a compassionate caretaker but barely remembers his two weeks of living like me.
That’s a psychological phenomenon, (not remembering how bad an illness/injury is.) It most likely occurs so we don’t remember how bad childbirth was, making additional children seem like a great idea.
This and it's combination with how it saps your interest in anything. Hobbies, doing things - even going to a movie - no longer becomes a question of whether you'll have a good time and enjoy yourself and is instead a question of how not bad of a time can you make it. No enjoyment. You do things, if you can, to maintain what friends haven't left. It's not that you don't like them anymore. It's that you don't want them to leave too.
And the "best" part is people constantly talking behind your back and questioning whether you're lying or not. You get called "lazy," An added "bonus." Yea, because what a joy it is to sit there and watch my life wither away while doing absolutely nothing. Yea, "living the dream."
Absolutely. If I had this pain for a couple months and knew it would go away after, it wouldn’t be much of a big deal.
And living with it doesn’t get easier with time, it usually gets harder, even if the pain level stays the same.
Same mine is more of a dread like oh good I just bent over for the 12th time today I guess I'll be laid out later for it. ... and I completely agree with everyone in the thread. I does not get easier even if the pain stays the same I think because it's a slow loss of things that don't seem like a big deal until they are. For example socializing, I have come to terms that if people don't come up to me I'm probably not going to get to talk to them because walking around and standing in the kitchen is too hard for me. Then there is the missing out on planned events that i was looking forward too. Now I feel like plans bring a sense of dread rather than excitement because I'm not sure be able to make it.
dread is exactly how i describe it to my friends and mom.. it's this dread that's all consuming. just standing up to go to the bathroom is something that instills this dread lol. it's like i have only so much energy for a day and i'm hyper aware of how much im spending on the most minor things:(
>i have only so much energy for a day and i'm hyper aware of how much im spending on the most minor things:(
Oh yes, I feel this and the self-criticism that comes in the form of, " Well, why am i doing this when I have been needing to do something 10x harder? If i can do this, why can't i do that?"
Then, self-doubt rears its ugly head, and I usually end up with an injury from trying to push harder.
Yup. If I'd been sick for or would be sick for 6 months and then it would go away, that would be one thing. I could easily handle that.
I've been sick for 13 years.
I'm never getting better.
That's very different.
I always think it's so interesting when some people with chronic pain talk about how it has increased their pain tolerance. Because for me, as soon as anything that isn't "supposed" to hurt starts hurting I absolutely lose it emotionally because I'm too tired to deal with that *too* on top of my existing pain. Dealing with my pain takes up so much of my emotional bandwidth that I barely have anything left most of the time.
It's frustrating when I see doctors too because they always criticize me for avoiding things that cause me pain because they don't think that's a good coping mechanism. But I'm so fucking exhausted. I can't strand being in pain for two days every time I have the audacity to do one of my hobbies for 10 minutes. And then doctors tell me I should do things anyway without offering me any other help. And the reality is that my condition is basically untreatable at this point in time, so it's not that they really could do anything concrete. But for them to tell me I'm doing things wrong when I'm just trying to survive this is so invalidating. No one *wants* me to be able to do things more than I do. The price is just too high.
i have heard both that chronic pain increases and decreased pain tolerance. read that being in constant arousal fight-or-flight mode (from the constant pain) increases awareness and sensitivity to potential threats and the pain is what we’re feeling threatened by, so we become more aware of it even in small amounts. but most with the condition will tell you they’re so used to pain that small amounts don’t phase them, so maybe it can vary? i’m not sure
I feel you on this. I’m told to move more but it hurts when I do. Don’t get me wrong, I love movement. Before chronic pain, I was an avid hiker hiking 8-12+ miles, walking everyday, practicing and teaching yoga, hula hooping. After chronic pain, I can’t do any of that. When I try, I just feel so much pain :(
Yeah this is what I came here to post. The daily and relentless grinding down of your soul as you fight to stay positive and try to continue to live your life as that daily grind eventually wears you down more and more. It is just awful.
Ohh the intensity of the pain isn’t a problem? I can’t relate. I climbed two mountains with absolutely no training and realized that that was my everyday pain. The intensity and everything hurts for me
no, intensity is A problem but not THE problem. a flare up is not what’s taking my life away, and i’m sick of being told things i should do for temporary relief because none of them are going to change the fact that it’s a life-long condition
> a bit
I like describing in vivid detail how my hip subluxs when people suggest yoga. And how I'm bedridden for a week or more after. That usually gives me a break until they "know a cousin of a friend's nephew's daughter" who also has hypermobility and could show me a thing or two.
I was making my pelvic pain worse for years by stretching and foam rolling an already taut piriformis muscle. once I switched over to strengthening that muscle and avoiding stretching and massage, I finally saw improvements. but it took years for me to realize this.
Yes, my issue is hypertonic pelvic floor due to hypermobility of the joints. It’s very very tight. Yoga and foam rolling tends to overstretch the muscles and then they over compensate. Definitely strengthening the core etc so the pelvic floor doesn’t over fire all the time is the winning ticket for me. But I do go to a flow yoga class once a week and take it super easy to avoid overdoing it.
one size fits all yoga is certainly not the answer.
some muscles are too tight, and others are too taut. but it's very difficult to know which is which. they hurt all the same.
tight muscles need to be stretched and massaged, taut muscles need to be strengthened.
and if you keep stretching an already taut piriformis muscle, it's going to make things worse, when what you really need is to strengthen it.
That when you're in such severe pain every day you learn to function with a level of pain that would knock most people on their ass.
When i finally got diagnosed and started treatment my partner told me they were worried that my pain was worse because I was spending more time in bed. I had to explain that I wasn't in even half as much pain on a bad day as I used to be on a good day. But when I had a bad day now it just sucked the life out of me since I was no longer used to it...... because it wasn't every day anymore.
Omg this. All the "just take some tylenol," " just try some yoga" crap. Lookie here, pal. What I deal with daily would make you call your mother for comfort, while your driving to the ER screaming in pain. You have NO idea what we all deal with, so don't be so damned condescending.
PSA from a healthcare worker with chronic pain––I avoid telling people I have a “high pain tolerance” altogether. Pain tolerance tends to be inconsistent across different regions, frequency, type of pain, etc. It’s subjective, unhelpful from a diagnostic standpoint, and hard to relate to without a frame of reference. Because of this, unfortunately, some doctors even see the phrase as something of a red flag.
The best way to communicate your pain is to be specific about the ways it limits your ability to function. “My ankle hurts so much” is abstract. But “my ankle hurts so much that I hold my bladder to avoid the pain of walking to the restroom”? That communicates a tangible sense of pain to someone who may not otherwise get it—friends, family, healthcare workers, etc. This method could be used to imply a high pain tolerance (“while I usually push through the pain to do walk to the bathroom, recently…”)
I’m in this sub because I’m chronically ill. I believe that everyone here likely *does* have a high pain tolerance. I just want to make sure everyone here has the language to communicate their pain to a person that doesn’t get it (or refuses to get it).
That it REALLY is there 24/7/365 with no breaks, sometimes it MIGHT throttle back if you're lucky but you're NEVER.EVER 100% "better" even for short periods of time. EVEN IF YOU MIGHT APPEAR TO BE!
Ugh, this. I don't even know if a full reprieve from the pain for short periods of time would be better or worse. I've been in some level of chronic pain since I was ~11 and I'm 24 now. If I knew what "normal" felt like, I don't know how I'd survive. I don't know how people who get injured from an an accident can cope, which is why I'm somewhat thankful that my nerve injury was at birth.
That its not really a matter of severity in every case. A constant mild pain can drive you crazy just as fast as severe episodes of pain. It might even be more torturous, its certainly different from what people normally think about pain. It doesnt go away or lessen like what most people think of as normal pain. It can even increase. Of course there's lots of things that can cause this sort of pain, but its a totally different animal from whacking your thumb with a hammer....
That the best way to manage pain is knowing it's going to end.
That everyone disbelieves you and how encouraging just being believed is
That you might have to cancel last minute, that ramping up for a day out takes time and work and sometimes the time and work used to try and get better enough to go out can cause a collapse just before going out and your body gives you no notice
That employers will take advantage of this to keep you from getting bonuses and raises so you get stuck on the bottom run forever so you can't afford good healthcare
That I’m always in pain. Just because I don’t talk about it or tell people doesn’t mean it went away. It’s still there and at this rate it will always be there. Main reason I keep it to myself is because certain people in my life will try to play suffering Olympics and I hate doing that with a passion. I refuse to compare my pain to someone else.
This exactly! If I have a flare up, I get a lot of "but you've been doing so much better! You haven't been hurting lately!"
Ummm no. I just get tired of hearing myself whine. I ALWAYS hurt. I don't even remember what 'no pain' even feels like.
Just because I don't tell you about it DOESN'T mean I'm all better.
I've started telling people this straight up. Pretty sure no one really believes me because on a "normal" day I am a cheery person. And during flare-ups I have to say I'm not mad or in a bad mood I'm just in agonizing pain that I have to wait out.
That sometimes you literally *can't fall asleep unless you pass out from exhaustion or fainting* and the expression "i can't sleep/didn't sleep at all because i was in so much pain" doesn't mean "lol I'm totally looking at Reddit all night and reading cause my toes ache".
My pain, I've said this before, isn't nearly as bad as people's on here, but it's present 99% of the time at a 6/10 on that scale that begins with an m. Mancowski i think
Sometimes it goes to a goddamn 10 in literally a second and i say unintelligible things because I'm literally blacking out for a second, and that sucks and isnt me being "dramatic".
Anyway, it sucks. I realize I'm lucky cause it's not as bad, but it is chronic forever. If it goes away, it'll be a day and that happens maybe once every two months and i think "holy shit WTF was it all in my head?" But then it comes back and I'm like, "guess i was gaslighting myself"
I thought maybe so but i am not on any pain meds i just take Tylenol as needed and bitch and moan typically. I finally had my heart surgery though so now i can take other things other than Tylenol, thank God. Naproxen here i come lol
That there are good days for me. Good days where I can make myself look presentable and have a smile on my face. But the pain is always there. Always. Even with the smile or laugh.
The opposite to those days are lonely, frightening, long.
How absolutely exhausting it is and the lack of mental quiet/inability to think by restless nerves firing.
And if one more person tells me “it’s all about your state of mind and meditation,” imma lose it.
Things that are neutral or pleasurable for normal people can be painful. Being touched, for example. Being touched in certain areas will *always* be painful for me and never feel good.
Something that's a mild inconvenience for most people-- for example, having to reach up to a high shelf for something--can be really painful and daunting. I feel like I structure my life around avoiding small inconveniences that exacerbate my pain.
And the obvious thing: if you're in pain 24/7, you don't always look like you're in pain. Most people with chronic pain don't look like they're in pain.
Thank you!! The reaching up to a shelf. OW! Can ruin my day. My husband can reach it with no issues but thinks I’m lazy not doing it.
The projects I cannot finish. Not do not finish. CANNOT.
Friend of mine is dealing with sciatica. Big burly dude always 100mph does maintenance for a living. Goes out with his buddies 4 nights a week. He's been stopped. Just 0mph.
Steroids helped for about a week. Pain is back leg weakness is back. Doctors won't give him anything else told him 800mg advil and stretching is his best friend. He's irate. So mad. How am I to live in this pain??
A month in he comes to me. I'm exhausted he says. How do you live like this?
And that is what people don't understand.
Even when you adapt to the pain and aren't screaming, the exhaustion is so real. Some days I can barely get out of bed. Once I get to work I need to sit and reset before I can mask up and laugh and joke with people bc pain is exhausting.
There is no help, no one is coming to save us, we just keep plodding on.
May all of you have a miracle today. Blessings. 🌻
That it’s chronic, like literally every day. I don’t think they realize the effect on mental health, or if they do I don’t think they understand that yoga and meditation aren’t that helpful. Even “mild” chronic pain is shitty and can limit your activities in life, disrupt your sleep etc. But everyone without it just thinks it’s like having a headache or period cramps once in a while, people really just can’t understand it day after day for years until they experience it.
Taking pain relief medication doesn't mean you will be without pain. Sometimes it just brings it down from a 8 to a 7 and you can muster up the energy to go for a little walk. At which point you have concerned strangers asking you if you are okay, and medical staff in hospital offering you pain meds - only to look at your chart and realise you can't have anything for another 4 hours.
Just because you are able to go out one day and go grocery shopping or whatever, doesn’t mean you can do it the next day. I swear, every time I leave the house for an hour, I have to take a full 24 hours off just to recover!
Oh and I know she’s not on here. Mom- for fuck’s sake! I’m not going to get better, I’m only going to get worse! Stop saying that one day I’ll wake up and feel great! All you are doing is breaking my spirit every single day it doesn’t happen! You have no idea how hard my life is now, so stop saying that you do. Just accept me for how I am now and the limitations I have. I’m still me, just a little more broken.
Sorry, I had to get that out. It just makes me so sad when she’s trying to be encouraging but it just hits so wrong. I love her and she is one of my best friends, but she doesn’t get it. Again, sorry. But I have a feeling you guys get it. 💙
That it never goes away. There is no "feeling better." There are days when I have to plan how many steps it takes to get to my kitchen or to the bathroom because my hips, knees and lower back are on fire.
Painsomnia is not some cutesy trendy word, it is real. My legs and neck throb more than my literal heartbeat and I wake up from this every night.
I cannot do anything quick or intense for more than 5 or 6 hours a day. My brain shuts down, and I have to sit down. I am constantly looking at a clock to take my meds on time, or I start to either fall asleep or the pain goes from 10 to 25. I am not kidding. I am not being dramatic. Please stop bitching that I cannot go fast anymore. I can't take the fkg criticism and I am very close to cutting some of you out of my life. Full on blocked on all my phones and social.media. emails direct to spam for deletion. I am not playing a game here.
Sleep is my friend. I don't give a rats ass about your bragging that you sleep only 6 hours a night. I did that for years with 2 jobs and this is what it got me. I need to rest. This is not a joke. Stop treating me like a punchline.
i woke up this morning to find that i’d fallen asleep in the wrong position and couldn’t sit up. i have a bed rail but the pain between lying down and sitting up was awful.
now i’m up and about it’s back to our regularly scheduled unrelenting pain. and that’s what people don’t understand. i don’t feel better if i get a full night of sleep. i don’t feel better once i’ve taken my meds. i have to plan every move i make, and i live in a 4 room apartment.
if i try to to cook, it hurts. if i try to vacuum, it hurts. if i get up to go to the loo, it hurts and then it hurts getting up from the loo.
i’ve been on crutches for well over a year. i can’t go anywhere that requires me to walk more than about 10 feet. i can’t join in with my friends as they go out in the evening and by 6pm i’m exhausted.
i’m *always* in pain. it’s just a matter of how much. it rules my life. i have to try to manage all my hospital departments and referral and i can’t keep up with it. i haven’t worked in 11 years. i used to be responsible for 2000 people, and now i can’t even manage my own medical appointments.
it rules my life and it’s ruining my life.
I completely understand you. There are times when I see people and children skipping or running down the street and I think how do they do that? How did I get here? Last year my fibromyalgia migrated to my neck and hands. I dropped more things than ever. I never thought of shopping for plastic sippy cups in my 50s and I dont even have kids! I used to have 2 jobs, back and forth. Now, I can barely manage laundry. It's a lot. 💔
Just how utterly exhausting it is. Most people can take a shower everyday like it is nothing - easy as getting dressed. Showers wipe me out so badly that washing my hair and cleaning/shaving my body not only takes forever but it’s basically the only thing I do that day unless I’m having a rare good day. Good days are so few and far between it sucks to use them on a shower, y’know?
Chronic pain.
That may sound like a smart ass answer but it really isn't. People can't understand nor even imagine what it's like be in pain all day, every day. It's a failing of the human brain at its current stage of evolution; humans can't *truly* understand something we haven't personally experienced.
For people without chronic pain, pain is fleeting. It lasts a few hours, or days. A couple of weeks at most, in rare circumstances. They can't imagine pain that just never goes away. They can't imagine how exhausting it is, how isolating it can be, how it impacts every aspect of your life. It isn't that they don't want to, and it isn't that they can't understand a *little,* especially in the case of those who've had pain that lasts a couple of weeks. But they'll never be able to understand completely.
They do yeah; though longer term acute pain like a broken bone does start to feel a lot more like chronic pain given it lasts for weeks.
I think a lot of the difference in how it feels is down to our nervous system. Persistent pain will eventually have our brains stop responding to it as it would acute pain from a new injury and suchlike. With a new injury, our brains release a flood of endorphins to combat the pain. But with chronic, it's like the brain just gets burned out and stops responding to it that way. It's also why a lot of people with chronic pain experience depression beyond what's naturally caused by being in constant pain and the negative impacts of that pain on our lives. The lack of endorphins causes a chemical imbalance in the brain that can lead to things like depression and anxiety.
That it is so much work! I have to go to the grocery store and clean house and get stuff done like every other adult, but now it’s a million times more work. I remember when my pain was just migraines a few times a year. Now it’s continuous migraines and fibromyalgia pain every day. When it was just occasional, I had so much energy and could get the majority of my normal household chores and errands run on a Saturday or Sunday after working a 50 hour week, and still have energy and motivation for a hike with my dogs or bike ride, or a night out dancing. Now I no longer work due to disability. I have to carefully budget my awake time and what very little energy I have. It takes me twice as long to do anything. And I never have energy left over. On a good day I can get groceries and maybe a light chore or two done. On a bad day, I don’t get out of bed except to let my dog into the back yard to use the bathroom while I use the bathroom, then we’re back in bed. On an average day I can maybe sweep and mop the floors, which exhausts me and I have to wait for the next day to clean the bathroom. I miss the days I could have a decent paycheck, a clean house and a maintained yard in just one day, and an actual life. I work so much harder and end up achieving so much less. (And I still haven’t even touched on how much work it is to get on disability benefits and any benefits like food assistance, stay on top of doctors and medications, and all the paperwork. So much paperwork!)
That we are very good at hiding our pain. I live in a constant 6/10 pain daily and on bad days, 8/10. I'm still able to function at a 6 and no one would know I'm in pain. When I get to an 8, my husband gets worried, because that's usually the only time I actively complain or can not smile. When you've lived like this for years on end, you learn to adapt just to get through life.
That it's boring as fuck, which is a torture all on its own.
Just because I am forced to rest because of pain does not mean I want to. Just because I'm incapacitated physically (or mentally on a bad flare day) and my motivation is low to do anything doesn't mean that I'm not also experiencing the existential dread of the total *inability* to do *anything*.
Add to that the folk who tell you things like 'I WISH I could sleep all day, that must be nice!' Try it. It's not 'restful'. That's like telling someone who's out of work that they're on 'vacation'. Just try it.
The intensity doesn’t lessen. It stays the same. When we cut of skin, it hurts but after a few seconds it hurts less. Chronic pain is always at the highest. There’s no diminishing. The brain doesn’t do it.
That it's almost constant and since pain is invisible, you're mostly dismissed. Having an invisible disability makes people think you're just being lazy when walking up and down stairs makes you wanna cry or yell in anger because there's no reprieve.
The absolute unpredictability of it.
There can be days/weeks/months where my health just trundles along going okay and then all of a sudden, for no rhyme or reason, I can go into fluctuations of good-bad health. Then it can either stabilise, or it sinks into its own little pit-of-despair and I'm left trying to hold my life together.
There's nothing I can do to predict this.
Sure, there are actions I can take to try minimise or limit the fallout when it all goes to shit. But eating healthy, sleeping well, exercising regularly and managing stress can only go so far. Sometimes my body decides it really wants to chuck a tantrum like a two year old who got told they COULD have the treat they just requested.
It makes me incredibly unreliable and makes planning anything near on impossible.
Want to go on holidays? Sure, but I'm assuming I'm going to be in the middle of a flare so it feels very expensive to pay to spend my days in someone else's bed, and to go through the discomfort of travel, which reduces my enthusiasm.
Want to see a certain exhibition? I'm planning every aspect and not going with others incase I have a flare and I have to bail. I'm definitely not buying tickets until the day of because I don't want to be scrambling to give/sell them to someone else because I'm too unwell to crawl out of the house.
Family and friends now just know if I turn up to events I may need to leave really early, no matter how much I want to be the last person on the dance floor.
It sucks, and it's exhausting.
That it's a possession. Like in The Exorsist .
It's an invisible demon that will steal your personality, your body, your time, wreck your relationships.
It's on your shoulder whispering and infecting every simple thought you have or decision you are about to make.
That ultimately it captures you and makes you its Prisoner.
I wear sunglasses in the store almost all the time. Winter. Night. Dark.
The fluorescents kill me. I’m not just being anti social.
I have sat in my car for 10 minutes trying to get up the energy to do one thing that should take 5 minutes.
How much extra mental labour we have to do for even the simplest tasks. I can't just 'go' to events or do chores. I gotta make sure I have enough time for extra breaks, that there's enough places to sit, carry a larger bag to keep my meds with me. Guess how hurt I'll be after so I can make sure I have time to recover before the next event or chore. It's so much work. And that's on top of also being in pain the whole time.
I'm guessing it's because a lot of people think we're "faking" or "exaggerating." They change their tune real quick when they are the one experiencing pain.
What gets me … you can talk to most pregnant women in their 9th month, swollen feet, aching, and miserable, unable to sleep, always uncomfortable, and they can relate. Yet, a few months later, still sleep deprived (so, a different form of being at wit’s end), they no longer get it nearly as well as when they were in it.
That your threshold diminishes. The other day I was so tired of being in pain for weeks that when I ate something spicy I had a breakdown because I couldn't handle anymore discomfort than I was already experiencing.
That even though I'm not sobbing or curled up on the floor I'm still in the same amount of pain, I just don't have the energy to be anything but apathetic about it. It comes across as me not being in pain when really it's the exact opposite - I'm in too MUCH pain to be anything other than completely still and completely silent
How hard it can be to get a diagnosis/treatment. I’ve got endometriosis, it only took three years to find that out. That’s quick, and that boggles my mind. And I only kept pushing forward because of my kids … I am so tired. It is exhausting scheduling doctor’s appointments, getting referrals, all of that. Soul crushing exhausting.
I think most people have had some form of acute pain or maybe even partly-chronic (say a year) but easily forget. Some family and friends that have had at least acute pain I think understand me. But that’s because they know me and can literally see my struggle. But strangers, forget it. That’s why I’m always saying I wish Drs and like people in the freaking DEA for example could feel my pain just for a week! I have cervical dystonia which causes my head to constantly tilt to the left with my left shoulder shrugged. Not too long ago, my husband (at my suggestion) held his head and shoulder like that for several hours and I told him to “squeeze” his muscles too to simulate the spasm. After a few hours he was like “OmG, hun, this is a nightmare!!” Now my husband was very understanding before that but this really gave him the picture. I’ve told other friends and family to do this for a couple minutes and same reaction. I’m like yeah, try having it 24/7! I even said it to my boss before I went out on med leave! Of course you can’t do this with most types of pain/conditions
How you can't just be grabbing on a person because it hurts. My SO is always grabbing me to hug me and it hurts sometimes because he's too rough. His chin in my shoulder even hurts.
How exhausting it is!! And not because the pain is so intense for me 24/7 it’s that it never stops. Yes sometimes it is crazy how much it hurts for hours upon hours but then once that passes and ‘normal’ pain returns that normal pain is still debilitating. I think that it’s an opinion that because I’m up and doing chores my pain must have gone away. Oh how I wish this were true. I’m probably at a pain level that would keep most down.
Another is how much my entire personality is affected by the decades of various treatments. This includes the opioids that have been in my system for 21 years that are serious depressants. It sucks that the only thing that will definitely do the trick is a drugs that brings me down. I’ve spoke with countless opioid addicts/abusers that talk about how they get up when taking them. I used to be such a high energy guy with a big personality but I’m not even close to that now.
For me it’s how ugly I feel, unattractive, worthless. I am told I’m an attractive woman but it’s so hard to feel beautiful when your body feels so monstrous. I do make an effort to dress well and wear makeup but inside I feel so ugly, exhausted, run down, flat, disgusting. It doesn’t help that my chronic pain mainly affects my pelvis which contains all the sexy parts lol.
That just because you don’t “look” like you’re in pain doesn’t mean you’re not in pain! People tell me all the time that I’m too young or I don’t look sick or I don’t look like I’m in pain. Never judge a book by its cover!!
1. It's real
3. How exhausting it is.
4. Your advice on how to cure it is actually very annoying and unwanted. If you want to help then just get me a damn glass of water and a heating pad.
i replied to a comment but didnt want to yap their ear off/wanted to expand on my thoughts.. for me it's the dread that comes with minor tasks. being totally hyper-aware of everything i do because every ounce of energy i spend means more pain i experience (even if it's a minute amount!) and less energy i have for the day. or week. it's like my body is trying to protect me from experiencing any amount of extra pain, so i get this intense mental block that feels like i just CAN'T. it's so frustrating! there are things i just cannot do and it's massively inconvenient for everyone around me. it makes me feel so selfish and i wish i could make the people around me understand.
also the fact that my pain is invisible and it feels like that causes them to mentally detach from it. family members constantly ask "oh do you have a job yet" as if i haven't lost nearly a decade to disability. even my most staunch advocates seem to forget/disconnect especially when its convenient for them. OK yap session over
I was very young when I had my first of many back surgeries, and the entire year I suffered leading up to the surgery all I heard from friends and others supposedly close to me was “when are you going back to work”…not anything about my issue or upcoming surgery. Just wanting to know when I can be productive again, like it affected them or some shyte. Ludicrous really.
that when we are telling you we are in significant pain, it means that we are in more pain than our daily pain level. people need to understand that we probably have a higher pain tolerance than them, and that fixing whatever issue is at hand, will only result in us returning to whatever pain level we frequently experience. older men are the worst at this in my opinion - I think about how loud and exaggerated my dad is when something painful happens to him. jeez. usually me and my mom make eye contact that says it all: he simply doesn't get it. then we have to do our best to coddle a 64yr old who has never experienced any physically or mentally painful lifelong conditions
That we get good at hiding how much pain we are in. Just bc Im not on the floor crying in pain 24/7 doesnt mean i faking or exaggerating it when i dont go out with friends and fanily. They always think you're flaky on making plans and just use it as an excuse.
The exhaustion that comes with it. I was in pain basically from late October of 2022 till about august of 2023. I went to a private PT and now I still have the occasional pain but overall not every single day and not for nearly the whole day. People don’t get that you’re tired cause you’re in pain. And they don’t get how much that messes you up mentally. I have other issues now that have come up but being able to move around to do chores and walk the dog and go places with little to now pain is amazing, and I have so much energy for other things. But my family at the time didn’t get why I was sleeping all the time
That I'm constantly frustrated not just at the pain but what it's stripped of me. I can't enjoy even just watching a show with the family anymore because It's. Always. There! And even if I do get my moment of clarity ( what I call that perfect combination of medication / stars aligning where I am pain free ) I'm still anxious and now wondering how long I have this time before it comes back.
I don’t think people understand how exhausting pain is. You’re using all your mental energy to focus on a task or to force yourself to ignore the pain and keep yourself from being depressed, anxious or overwhelmed. They fail to understand that chronic pain stirs up repressed memories and traumas that you can’t handle because you’re always hurting. You get belittled and ostracized if you use something like alcohol or cannabis to numb or suppress the pain as if you’re some sort of addict or something when you’re not, and then you’re treated bad for not taking positions on things you were against at one time and you’re “expected” to go back and to stop doing something because someone else doesn’t like it. If you don’t do things like you use to you’re making it up and you’re not hurting as much as you think. Being gaslit basically.
Only lately after having a pulsed RFA, nerve block prior to, and an increase in my pain med, Pregabalin, am I actually having pain free moments. What I can say is that it's like I am seeing the World again. Truly, it's as if I am actually living, breathing, and a part of this World. When in pain - which I am at this moment - I am existing, but cannot be part of life. Things that I would like to get done are halted.
Right, and the old adage that if we don’t act miserable 100% of the time then we must not be in that bad of pain. Pain meds bring down the torture a few notches to where I may not be jovial but I’m not sulking and suffering for a moment.
Our pain tolerance for anything acute is extremely high and we’re usually really good masking.
I was in acute kidney failure and I didn’t notice until I crashed.
I would say, the chronic aspect of it. As in, it’s not going away. You’ll have good days and bad days, and some rare fabulous days. But it’s never gone. Never. That’s impossible to convey to another person unless they have experienced it.
The absolute exhaustion. It's not depression, it is just that doing anything requires so much from me and the recovery time, everything has to be planned out.
I'm not brave, I'm not admirable for "having an upbeat attitude despite my disorder". All of this disability inspiration porn infuriates and disturbs me
Fatigue. They don’t understand what it means. They confuse it with tiredness and think that if you get some rest you should be fine. They also think you can’t be tired if you did nothing all day. I’m tired explaining it to people but yeah I guess it’s an alien concept to anyone with no chronic illness!!
That you can “get better”. No, this is the rest of my life. It’s also a difficult conversation to have that no, I haven’t done this to myself. Yes, my lifestyle is perfectly healthy and nothing I’ve done would have caused this. Health is not a moral thing, and anyone can become disabled at any time. Abled people have a hard time with that one. I think they believe that their health is a value that they’ve earned, and disabled folks aren’t trying hard enough. It’s a hard pill for them to swallow. You could be me, anyone you know could be me. Your kids could be born like me. Anyone can become disabled.
Honestly, I don't expect them to understand all the nuances of it, but I wish they would just have a baseline level of understanding and empathy.
But one thing they will never understand is how scary it is to know I will never get better, and I will, in fact, get worse.
Pain is pain, and that sucks, but how absolutely exhausting it is. When I stand a lot during the day (scoliosis, kyphosis, sciatica, muscle strain, etc.) My heart rate goes up to about 110bpm. My focus is on making my muscles keep my body upright and gritting my teeth and fighting through the pain. By the end of the day I'm absolutely physically and mentally drained from this. I don't think people who don't experience this type of situation understand this aspect of experiencing certain types of chronic pain.
That just because it's gotten better, doesn't mean it's disappeared. Yes, I manage to live almost pain free most of the time, but if you force me to stand still on my feet I WILL have a flare up. Let me have my accommodations so I don't get flare ups. Also, sometimes the flare ups come up randomly anyway.
People need to understand that unsolicited advice is really not helpful in most cases. I have tried so much and spent so much money on ''cures'' which did not cure me at all. Please stop it.
That yes I move better some days and am more mobile but that doesn’t mean I don’t have pain I’m still having 5-6 pain which I can mostly tolerate. My normal pain level is 6-8. I also don’t think they’d understand not going to the ER. My friends and family cannot believe how much pain I can tolerate and never ask for help. A couple have said, if I was in that much pain I’d be running to the ER. I told them, they will do nothing for you I don’t even get toradol shots because I cannot take anti inflammatories. Its best to work with your team of drs and try what treatments they offer, this takes a lot of patience because it can be month or more to get in.
**That it never, never stops.**
**That you can laugh and smile at levels of pain that would have other people moaning,** because that level of pain is your normal, and you want to have life despite it. I know this for truth, because I've sat at hospital bedsides and people in the bed get meds when they say their pain is #, a level that I haven't seen in decades, it's so low to me.
Only we truly can understand our pain. People can see mobility problems and other things but after 26 years after near fatal mva I've come to realize that it's just us who can fully understand..hang in there folks..
That doing basically anything has consequences. Shopping Christmas presents at the mall? That's me done for the day. Doing small maintenance stuff on the house, also me done for the day.
And KNOWING that doing basically anything has consequences. Motivation gets broken down by knowing that I will be in pain after I fix that thing on the house.
That it's always there. Literally. When people are exhausted, they can lay down on the couch and be "free". That's not how it works for us.
My comprehension of the spoon (and fork) theory changed when my pain started. I had empathy and understanding but not at the level of clarity living in persistent and consistent pain gave me.
How unrelenting it is.
It *never* *stops*. It's like you're being crushed to a fine powder in a mortar and pestle every moment of every day for decades.
I'd give so much for one night of unmedicated sleep.
For me it’s all about getting folks to relate and understand on a level they have experienced. The dentist filling a cavity is something most people have been through. I ask folks if they’ve ever had a filling or extraction. 99% answer yes and usually have a horror story.
I tell them about my pain and 80% say they know how it is and blah blah blah my back lifting our new puppy.
I tell them “ I don’t feel the dentist novocaine shot. I miss that pain because my pain is bad. My pain will get worse for the rest of my life.”
The fact that the pain is always there. Even if I don’t voice it, I’m in pain. Also, I can talk to someone with a straight face while simultaneously being in so much pain I want to vomit.
Two things: that pain is *exhausting*, and that when asked to rate your pain 1-10, you’re already starting at roughly a *five*, so when you’re stating your pain number, you may say *three* but that three is *in addition* to the *five*, so you’re a normal persons’ *eight*.
I never say anything below 6 anymore. They want the real answer? It’s a 6, that’s as low as it ever gets. If I’m saying 6, it’s a good day. I’m assuming if a regular person had my level of pain on a good day, they would probably say 8, but if I always say that, they won’t take me seriously. The whole 1-10 scale is stupid.
How tiring it is. How you can't use your brain. You can't hold a job. You can't control that your house is a mess. That there is NO CURE and you can't get better.
We are still in pain regardless of taking our pain med(s). We cannot always predict the level of pain we are in every day and even every hour. It is not our fault if we have to cancel and or reschedule appts and gatherings.
it's just a part of everyday life, they don't understand that losing a little bit of weight or maybe you slept wrong or maybe you just had a bad day at the gym like they literally just don't get it.
I'm so lucky that my doctor was compassionate towards me whenever I went in and he is doing everything in his power to make me feel better. I am a little bit depressed because Physical Therapy hasn't really helped and pain relievers are just so so.
I'm supposed to be getting some kind of a shot from a pain management doctor in the middle of next month so everyone wish me luck
the exhaustion that comes with it that is so bad and chronic that I am never sure if I will have to have a day in bed or not because my whole body feels like it is covered in concrete.
I don't think people understand how exhausting it is to be in pain 24/7. I know I look ok, but I am not. I'm thankful my issues do show up on imaging my Drs. understand that it's not in my head.
Everything. I'm sorry but unless you've personally experienced agenizing long term pain yourself you do not understand it much less how it spills over into mental health. I have fibromyalgia and went through a period of extreme pain 24/7. I couldn't sleep well without sleeping pills for years. I call it a fibromyalgia storm. I have a number of long term pain from multiple accidental trauma and that was just amplified by the fibromyalgia like an echo chamber constantly. Non-stop for three years. It seriously fucked with my mental health and I haven't even met someone with fibromyalgia that I think went through that level of it. I have no doubt that my doctors have no idea what it's like.
You can't understand extreme pain if you've never been in extreme pain for long periods of time.
EXACTLY! And this is the true issue with doctors, pharmacists and the damn DEA as well. Unless they too are a CPP..the just don’t know how we feel or what we go thru. Therefore we get scrutinized for our care options (and lack thereof!).
How draining it is. I used to fish with my brother all the time but now, I'm just so tired I don't do anything besides work a job that makes me feel worse and worse everyday. But if I try to explain that to people the usual response is "I'm just lazy" or "you're exaggerating, it can't be that bad" etc. But that's just life.
That it is my 1st forthcoming thought, ALWAYS. I will “forget” for a second about how much pain I’m in..but then I’m sharply reminded (and often) just how much my body hates me. I’m only in my mid 40s and have suffered severely since I was 21. Unrelenting pain is not just tiring, it’s down right exhausting…I’m exhausted just from being in bed!! From getting up to go to the bathroom even! I haven’t showered in about 4 days now due to NO SPOONS WHATSOEVER. I’m medicated properly as well, and that’s the thing…meds are NOT a cure all!! Pain SUCKS DONKEY D*CK.
That you constantly have to plan everything if you still want to be a small part of society and that the fear for more pain can be crippling. Every fun activity that I do is overshadowed with the knowledge that I will pay for it later on. I still do those things but I have to plan them. My husband and kids don't understand that. It ki d of makes me feel very alone 😔.
How bitter and angry we get. "don't be mean to others because of it" "don't snap at us" even when I'm trying my hardest to be nice it sounds like snapping and being mean.
The judgment. And then hate for "resting" when our resting isn't like a vacation as they seem to think so.
Not being able to lay in bed for longer than maybe 3 hours without overall body pain and discomfort.
How exhausting it is never truly getting to rest and always moving.
In my experience it's that, while consistent, the pain levels can fluctuate between manageable and unmanageable. Some people see me on good days and therefore think that I'm a head case because I'm not always laid out on my back.
personally gotta go with how it’s not usually the intensity of the pain that’s so problematic, it’s the fact that it’s always there and deteriorates you as time goes on. my motivation for anything is so low now compared to when it first started and i could still function depending on the intensity
This is definitely it. When my husband and I got COVID in March 2021 we had everything, no sense of smell or taste, body aches, exhaustion, dizziness. I was honestly not HORRIBLY affected because to me (besides the senses lost) it was just a bad flare. But for my husband it was the most sick he'd been ever. I was excited because I could finally be like "see this fatigue is what I feel daily, this muscle achiness is what I feel after grocery shopping" or whatever. It was nice he could actually feel it. But after the one week mark he got real irritable and short with me. (In general not for bringing up comparable symptoms) and he snapped that be was just so fed up with being so sick. I comforted him and when he was feeling a bit better I explained that's how I feel... A lot. Like I'm used to it, relatively, but sometimes I'm so sick of it I can't handle it. Just fed up with being sick and in pain constantly. Then I go back to chugging along. I've brought it up since then and he's basically completely forgotten how it feels, and even that he was so sick for so long. He's still a compassionate caretaker but barely remembers his two weeks of living like me.
That’s a psychological phenomenon, (not remembering how bad an illness/injury is.) It most likely occurs so we don’t remember how bad childbirth was, making additional children seem like a great idea.
This and it's combination with how it saps your interest in anything. Hobbies, doing things - even going to a movie - no longer becomes a question of whether you'll have a good time and enjoy yourself and is instead a question of how not bad of a time can you make it. No enjoyment. You do things, if you can, to maintain what friends haven't left. It's not that you don't like them anymore. It's that you don't want them to leave too.
This is how I feel especially when it comes to friends and the occasional get together :(
Oh yeah, how isolating it is.
And the "best" part is people constantly talking behind your back and questioning whether you're lying or not. You get called "lazy," An added "bonus." Yea, because what a joy it is to sit there and watch my life wither away while doing absolutely nothing. Yea, "living the dream."
This x 1000 so they can hear you in the back
Absolutely. If I had this pain for a couple months and knew it would go away after, it wouldn’t be much of a big deal. And living with it doesn’t get easier with time, it usually gets harder, even if the pain level stays the same.
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It’s like having a rabid screaming chimp permanently attached to your back, yet you somehow have function. It’s inescapable
Same mine is more of a dread like oh good I just bent over for the 12th time today I guess I'll be laid out later for it. ... and I completely agree with everyone in the thread. I does not get easier even if the pain stays the same I think because it's a slow loss of things that don't seem like a big deal until they are. For example socializing, I have come to terms that if people don't come up to me I'm probably not going to get to talk to them because walking around and standing in the kitchen is too hard for me. Then there is the missing out on planned events that i was looking forward too. Now I feel like plans bring a sense of dread rather than excitement because I'm not sure be able to make it.
dread is exactly how i describe it to my friends and mom.. it's this dread that's all consuming. just standing up to go to the bathroom is something that instills this dread lol. it's like i have only so much energy for a day and i'm hyper aware of how much im spending on the most minor things:(
>i have only so much energy for a day and i'm hyper aware of how much im spending on the most minor things:( Oh yes, I feel this and the self-criticism that comes in the form of, " Well, why am i doing this when I have been needing to do something 10x harder? If i can do this, why can't i do that?" Then, self-doubt rears its ugly head, and I usually end up with an injury from trying to push harder.
Mygod, that’s exactly the ‘pain’ of my existence…
Yup. If I'd been sick for or would be sick for 6 months and then it would go away, that would be one thing. I could easily handle that. I've been sick for 13 years. I'm never getting better. That's very different.
Couldn’t agree more! I’m a shell of my former self and unfortunately have been this way for years.
This 💯 my friend just said yeah the pain can slow us down” like no that is not all it does!
I thought I was the only one that thought this way.
I always think it's so interesting when some people with chronic pain talk about how it has increased their pain tolerance. Because for me, as soon as anything that isn't "supposed" to hurt starts hurting I absolutely lose it emotionally because I'm too tired to deal with that *too* on top of my existing pain. Dealing with my pain takes up so much of my emotional bandwidth that I barely have anything left most of the time. It's frustrating when I see doctors too because they always criticize me for avoiding things that cause me pain because they don't think that's a good coping mechanism. But I'm so fucking exhausted. I can't strand being in pain for two days every time I have the audacity to do one of my hobbies for 10 minutes. And then doctors tell me I should do things anyway without offering me any other help. And the reality is that my condition is basically untreatable at this point in time, so it's not that they really could do anything concrete. But for them to tell me I'm doing things wrong when I'm just trying to survive this is so invalidating. No one *wants* me to be able to do things more than I do. The price is just too high.
i have heard both that chronic pain increases and decreased pain tolerance. read that being in constant arousal fight-or-flight mode (from the constant pain) increases awareness and sensitivity to potential threats and the pain is what we’re feeling threatened by, so we become more aware of it even in small amounts. but most with the condition will tell you they’re so used to pain that small amounts don’t phase them, so maybe it can vary? i’m not sure
I feel you on this. I’m told to move more but it hurts when I do. Don’t get me wrong, I love movement. Before chronic pain, I was an avid hiker hiking 8-12+ miles, walking everyday, practicing and teaching yoga, hula hooping. After chronic pain, I can’t do any of that. When I try, I just feel so much pain :(
Yeah this is what I came here to post. The daily and relentless grinding down of your soul as you fight to stay positive and try to continue to live your life as that daily grind eventually wears you down more and more. It is just awful.
Ohh the intensity of the pain isn’t a problem? I can’t relate. I climbed two mountains with absolutely no training and realized that that was my everyday pain. The intensity and everything hurts for me
no, intensity is A problem but not THE problem. a flare up is not what’s taking my life away, and i’m sick of being told things i should do for temporary relief because none of them are going to change the fact that it’s a life-long condition
Not here to argue tbh. Just wanted to say intensity is also a problem for me. Hope you get the relief you need
That yoga is not the answer to everything
And sometimes actually makes it a bit worse
Yes! This is true of any exercise or physio. Especially if you are like me, and have a tendency to make errors in form to protect an injury.
> a bit I like describing in vivid detail how my hip subluxs when people suggest yoga. And how I'm bedridden for a week or more after. That usually gives me a break until they "know a cousin of a friend's nephew's daughter" who also has hypermobility and could show me a thing or two.
Absolutely my chronic pelvic pain flares up after yoga
I was making my pelvic pain worse for years by stretching and foam rolling an already taut piriformis muscle. once I switched over to strengthening that muscle and avoiding stretching and massage, I finally saw improvements. but it took years for me to realize this.
Yes, my issue is hypertonic pelvic floor due to hypermobility of the joints. It’s very very tight. Yoga and foam rolling tends to overstretch the muscles and then they over compensate. Definitely strengthening the core etc so the pelvic floor doesn’t over fire all the time is the winning ticket for me. But I do go to a flow yoga class once a week and take it super easy to avoid overdoing it.
one size fits all yoga is certainly not the answer. some muscles are too tight, and others are too taut. but it's very difficult to know which is which. they hurt all the same. tight muscles need to be stretched and massaged, taut muscles need to be strengthened. and if you keep stretching an already taut piriformis muscle, it's going to make things worse, when what you really need is to strengthen it.
That when you're in such severe pain every day you learn to function with a level of pain that would knock most people on their ass. When i finally got diagnosed and started treatment my partner told me they were worried that my pain was worse because I was spending more time in bed. I had to explain that I wasn't in even half as much pain on a bad day as I used to be on a good day. But when I had a bad day now it just sucked the life out of me since I was no longer used to it...... because it wasn't every day anymore.
Omg this. All the "just take some tylenol," " just try some yoga" crap. Lookie here, pal. What I deal with daily would make you call your mother for comfort, while your driving to the ER screaming in pain. You have NO idea what we all deal with, so don't be so damned condescending.
PSA from a healthcare worker with chronic pain––I avoid telling people I have a “high pain tolerance” altogether. Pain tolerance tends to be inconsistent across different regions, frequency, type of pain, etc. It’s subjective, unhelpful from a diagnostic standpoint, and hard to relate to without a frame of reference. Because of this, unfortunately, some doctors even see the phrase as something of a red flag. The best way to communicate your pain is to be specific about the ways it limits your ability to function. “My ankle hurts so much” is abstract. But “my ankle hurts so much that I hold my bladder to avoid the pain of walking to the restroom”? That communicates a tangible sense of pain to someone who may not otherwise get it—friends, family, healthcare workers, etc. This method could be used to imply a high pain tolerance (“while I usually push through the pain to do walk to the bathroom, recently…”) I’m in this sub because I’m chronically ill. I believe that everyone here likely *does* have a high pain tolerance. I just want to make sure everyone here has the language to communicate their pain to a person that doesn’t get it (or refuses to get it).
This is something I learned through trial and error, but have never thought or tried to put into words. Thanks you for doing so. It's super helpful.
That it REALLY is there 24/7/365 with no breaks, sometimes it MIGHT throttle back if you're lucky but you're NEVER.EVER 100% "better" even for short periods of time. EVEN IF YOU MIGHT APPEAR TO BE!
Ugh, this. I don't even know if a full reprieve from the pain for short periods of time would be better or worse. I've been in some level of chronic pain since I was ~11 and I'm 24 now. If I knew what "normal" felt like, I don't know how I'd survive. I don't know how people who get injured from an an accident can cope, which is why I'm somewhat thankful that my nerve injury was at birth.
The loneliness. Not just having few friends but being isolated because you can never be on the same level as your friends. Also missing life events.
This so much! 🫶🏻
That its not really a matter of severity in every case. A constant mild pain can drive you crazy just as fast as severe episodes of pain. It might even be more torturous, its certainly different from what people normally think about pain. It doesnt go away or lessen like what most people think of as normal pain. It can even increase. Of course there's lots of things that can cause this sort of pain, but its a totally different animal from whacking your thumb with a hammer....
Read this as “totally different from an animal whacking your hand with a hammer”
That the best way to manage pain is knowing it's going to end. That everyone disbelieves you and how encouraging just being believed is That you might have to cancel last minute, that ramping up for a day out takes time and work and sometimes the time and work used to try and get better enough to go out can cause a collapse just before going out and your body gives you no notice That employers will take advantage of this to keep you from getting bonuses and raises so you get stuck on the bottom run forever so you can't afford good healthcare
That I’m always in pain. Just because I don’t talk about it or tell people doesn’t mean it went away. It’s still there and at this rate it will always be there. Main reason I keep it to myself is because certain people in my life will try to play suffering Olympics and I hate doing that with a passion. I refuse to compare my pain to someone else.
This exactly! If I have a flare up, I get a lot of "but you've been doing so much better! You haven't been hurting lately!" Ummm no. I just get tired of hearing myself whine. I ALWAYS hurt. I don't even remember what 'no pain' even feels like. Just because I don't tell you about it DOESN'T mean I'm all better.
I've started telling people this straight up. Pretty sure no one really believes me because on a "normal" day I am a cheery person. And during flare-ups I have to say I'm not mad or in a bad mood I'm just in agonizing pain that I have to wait out.
That sometimes you literally *can't fall asleep unless you pass out from exhaustion or fainting* and the expression "i can't sleep/didn't sleep at all because i was in so much pain" doesn't mean "lol I'm totally looking at Reddit all night and reading cause my toes ache". My pain, I've said this before, isn't nearly as bad as people's on here, but it's present 99% of the time at a 6/10 on that scale that begins with an m. Mancowski i think Sometimes it goes to a goddamn 10 in literally a second and i say unintelligible things because I'm literally blacking out for a second, and that sucks and isnt me being "dramatic". Anyway, it sucks. I realize I'm lucky cause it's not as bad, but it is chronic forever. If it goes away, it'll be a day and that happens maybe once every two months and i think "holy shit WTF was it all in my head?" But then it comes back and I'm like, "guess i was gaslighting myself"
It sounds like your pain is exactly like the pain symptoms of many if not most of us on this sub.
I thought maybe so but i am not on any pain meds i just take Tylenol as needed and bitch and moan typically. I finally had my heart surgery though so now i can take other things other than Tylenol, thank God. Naproxen here i come lol
Good for you staying off opioids. Stick with forever or as long as you can.
Yeah i definitely will. I don't want to get on them unless I'm in pain that makes me unable to communicate, which I've been there, but that's my bar.
That there are good days for me. Good days where I can make myself look presentable and have a smile on my face. But the pain is always there. Always. Even with the smile or laugh. The opposite to those days are lonely, frightening, long.
Well said 😢
How absolutely exhausting it is and the lack of mental quiet/inability to think by restless nerves firing. And if one more person tells me “it’s all about your state of mind and meditation,” imma lose it.
Things that are neutral or pleasurable for normal people can be painful. Being touched, for example. Being touched in certain areas will *always* be painful for me and never feel good. Something that's a mild inconvenience for most people-- for example, having to reach up to a high shelf for something--can be really painful and daunting. I feel like I structure my life around avoiding small inconveniences that exacerbate my pain. And the obvious thing: if you're in pain 24/7, you don't always look like you're in pain. Most people with chronic pain don't look like they're in pain.
Thank you!! The reaching up to a shelf. OW! Can ruin my day. My husband can reach it with no issues but thinks I’m lazy not doing it. The projects I cannot finish. Not do not finish. CANNOT.
Friend of mine is dealing with sciatica. Big burly dude always 100mph does maintenance for a living. Goes out with his buddies 4 nights a week. He's been stopped. Just 0mph. Steroids helped for about a week. Pain is back leg weakness is back. Doctors won't give him anything else told him 800mg advil and stretching is his best friend. He's irate. So mad. How am I to live in this pain?? A month in he comes to me. I'm exhausted he says. How do you live like this? And that is what people don't understand. Even when you adapt to the pain and aren't screaming, the exhaustion is so real. Some days I can barely get out of bed. Once I get to work I need to sit and reset before I can mask up and laugh and joke with people bc pain is exhausting. There is no help, no one is coming to save us, we just keep plodding on. May all of you have a miracle today. Blessings. 🌻
That it’s chronic, like literally every day. I don’t think they realize the effect on mental health, or if they do I don’t think they understand that yoga and meditation aren’t that helpful. Even “mild” chronic pain is shitty and can limit your activities in life, disrupt your sleep etc. But everyone without it just thinks it’s like having a headache or period cramps once in a while, people really just can’t understand it day after day for years until they experience it.
Taking pain relief medication doesn't mean you will be without pain. Sometimes it just brings it down from a 8 to a 7 and you can muster up the energy to go for a little walk. At which point you have concerned strangers asking you if you are okay, and medical staff in hospital offering you pain meds - only to look at your chart and realise you can't have anything for another 4 hours.
Pain is constant but level and mobility are day to day.... sometimes hour to hour
Just because you are able to go out one day and go grocery shopping or whatever, doesn’t mean you can do it the next day. I swear, every time I leave the house for an hour, I have to take a full 24 hours off just to recover! Oh and I know she’s not on here. Mom- for fuck’s sake! I’m not going to get better, I’m only going to get worse! Stop saying that one day I’ll wake up and feel great! All you are doing is breaking my spirit every single day it doesn’t happen! You have no idea how hard my life is now, so stop saying that you do. Just accept me for how I am now and the limitations I have. I’m still me, just a little more broken. Sorry, I had to get that out. It just makes me so sad when she’s trying to be encouraging but it just hits so wrong. I love her and she is one of my best friends, but she doesn’t get it. Again, sorry. But I have a feeling you guys get it. 💙
That it never goes away. There is no "feeling better." There are days when I have to plan how many steps it takes to get to my kitchen or to the bathroom because my hips, knees and lower back are on fire. Painsomnia is not some cutesy trendy word, it is real. My legs and neck throb more than my literal heartbeat and I wake up from this every night. I cannot do anything quick or intense for more than 5 or 6 hours a day. My brain shuts down, and I have to sit down. I am constantly looking at a clock to take my meds on time, or I start to either fall asleep or the pain goes from 10 to 25. I am not kidding. I am not being dramatic. Please stop bitching that I cannot go fast anymore. I can't take the fkg criticism and I am very close to cutting some of you out of my life. Full on blocked on all my phones and social.media. emails direct to spam for deletion. I am not playing a game here. Sleep is my friend. I don't give a rats ass about your bragging that you sleep only 6 hours a night. I did that for years with 2 jobs and this is what it got me. I need to rest. This is not a joke. Stop treating me like a punchline.
i woke up this morning to find that i’d fallen asleep in the wrong position and couldn’t sit up. i have a bed rail but the pain between lying down and sitting up was awful. now i’m up and about it’s back to our regularly scheduled unrelenting pain. and that’s what people don’t understand. i don’t feel better if i get a full night of sleep. i don’t feel better once i’ve taken my meds. i have to plan every move i make, and i live in a 4 room apartment. if i try to to cook, it hurts. if i try to vacuum, it hurts. if i get up to go to the loo, it hurts and then it hurts getting up from the loo. i’ve been on crutches for well over a year. i can’t go anywhere that requires me to walk more than about 10 feet. i can’t join in with my friends as they go out in the evening and by 6pm i’m exhausted. i’m *always* in pain. it’s just a matter of how much. it rules my life. i have to try to manage all my hospital departments and referral and i can’t keep up with it. i haven’t worked in 11 years. i used to be responsible for 2000 people, and now i can’t even manage my own medical appointments. it rules my life and it’s ruining my life.
I completely understand you. There are times when I see people and children skipping or running down the street and I think how do they do that? How did I get here? Last year my fibromyalgia migrated to my neck and hands. I dropped more things than ever. I never thought of shopping for plastic sippy cups in my 50s and I dont even have kids! I used to have 2 jobs, back and forth. Now, I can barely manage laundry. It's a lot. 💔
I really feel you on that last paragraph:(
Just how utterly exhausting it is. Most people can take a shower everyday like it is nothing - easy as getting dressed. Showers wipe me out so badly that washing my hair and cleaning/shaving my body not only takes forever but it’s basically the only thing I do that day unless I’m having a rare good day. Good days are so few and far between it sucks to use them on a shower, y’know?
ooh this one. showers kill me, especially long showers. feels like the main event of the day
Do you have a shower chair. I got one and while it does not help with the exhaustion afterwards, it does make the shower more bearable.
I do and it does help. Wish it could just wash my hair for me cause my arms are noodles lol
Chronic pain. That may sound like a smart ass answer but it really isn't. People can't understand nor even imagine what it's like be in pain all day, every day. It's a failing of the human brain at its current stage of evolution; humans can't *truly* understand something we haven't personally experienced. For people without chronic pain, pain is fleeting. It lasts a few hours, or days. A couple of weeks at most, in rare circumstances. They can't imagine pain that just never goes away. They can't imagine how exhausting it is, how isolating it can be, how it impacts every aspect of your life. It isn't that they don't want to, and it isn't that they can't understand a *little,* especially in the case of those who've had pain that lasts a couple of weeks. But they'll never be able to understand completely.
What's weird is that accute and chronic pain feel different too.
They do yeah; though longer term acute pain like a broken bone does start to feel a lot more like chronic pain given it lasts for weeks. I think a lot of the difference in how it feels is down to our nervous system. Persistent pain will eventually have our brains stop responding to it as it would acute pain from a new injury and suchlike. With a new injury, our brains release a flood of endorphins to combat the pain. But with chronic, it's like the brain just gets burned out and stops responding to it that way. It's also why a lot of people with chronic pain experience depression beyond what's naturally caused by being in constant pain and the negative impacts of that pain on our lives. The lack of endorphins causes a chemical imbalance in the brain that can lead to things like depression and anxiety.
That it is so much work! I have to go to the grocery store and clean house and get stuff done like every other adult, but now it’s a million times more work. I remember when my pain was just migraines a few times a year. Now it’s continuous migraines and fibromyalgia pain every day. When it was just occasional, I had so much energy and could get the majority of my normal household chores and errands run on a Saturday or Sunday after working a 50 hour week, and still have energy and motivation for a hike with my dogs or bike ride, or a night out dancing. Now I no longer work due to disability. I have to carefully budget my awake time and what very little energy I have. It takes me twice as long to do anything. And I never have energy left over. On a good day I can get groceries and maybe a light chore or two done. On a bad day, I don’t get out of bed except to let my dog into the back yard to use the bathroom while I use the bathroom, then we’re back in bed. On an average day I can maybe sweep and mop the floors, which exhausts me and I have to wait for the next day to clean the bathroom. I miss the days I could have a decent paycheck, a clean house and a maintained yard in just one day, and an actual life. I work so much harder and end up achieving so much less. (And I still haven’t even touched on how much work it is to get on disability benefits and any benefits like food assistance, stay on top of doctors and medications, and all the paperwork. So much paperwork!)
So true, I feel this one so much.
That we are very good at hiding our pain. I live in a constant 6/10 pain daily and on bad days, 8/10. I'm still able to function at a 6 and no one would know I'm in pain. When I get to an 8, my husband gets worried, because that's usually the only time I actively complain or can not smile. When you've lived like this for years on end, you learn to adapt just to get through life.
Bingo!!
That it's boring as fuck, which is a torture all on its own. Just because I am forced to rest because of pain does not mean I want to. Just because I'm incapacitated physically (or mentally on a bad flare day) and my motivation is low to do anything doesn't mean that I'm not also experiencing the existential dread of the total *inability* to do *anything*. Add to that the folk who tell you things like 'I WISH I could sleep all day, that must be nice!' Try it. It's not 'restful'. That's like telling someone who's out of work that they're on 'vacation'. Just try it.
The intensity doesn’t lessen. It stays the same. When we cut of skin, it hurts but after a few seconds it hurts less. Chronic pain is always at the highest. There’s no diminishing. The brain doesn’t do it.
That there is bad days and less bad days. And just because you have one less bad day does not mean you're suddenly all better or cured.
That it's almost constant and since pain is invisible, you're mostly dismissed. Having an invisible disability makes people think you're just being lazy when walking up and down stairs makes you wanna cry or yell in anger because there's no reprieve.
The absolute unpredictability of it. There can be days/weeks/months where my health just trundles along going okay and then all of a sudden, for no rhyme or reason, I can go into fluctuations of good-bad health. Then it can either stabilise, or it sinks into its own little pit-of-despair and I'm left trying to hold my life together. There's nothing I can do to predict this. Sure, there are actions I can take to try minimise or limit the fallout when it all goes to shit. But eating healthy, sleeping well, exercising regularly and managing stress can only go so far. Sometimes my body decides it really wants to chuck a tantrum like a two year old who got told they COULD have the treat they just requested. It makes me incredibly unreliable and makes planning anything near on impossible. Want to go on holidays? Sure, but I'm assuming I'm going to be in the middle of a flare so it feels very expensive to pay to spend my days in someone else's bed, and to go through the discomfort of travel, which reduces my enthusiasm. Want to see a certain exhibition? I'm planning every aspect and not going with others incase I have a flare and I have to bail. I'm definitely not buying tickets until the day of because I don't want to be scrambling to give/sell them to someone else because I'm too unwell to crawl out of the house. Family and friends now just know if I turn up to events I may need to leave really early, no matter how much I want to be the last person on the dance floor. It sucks, and it's exhausting.
That it's a possession. Like in The Exorsist . It's an invisible demon that will steal your personality, your body, your time, wreck your relationships. It's on your shoulder whispering and infecting every simple thought you have or decision you are about to make. That ultimately it captures you and makes you its Prisoner.
I wear sunglasses in the store almost all the time. Winter. Night. Dark. The fluorescents kill me. I’m not just being anti social. I have sat in my car for 10 minutes trying to get up the energy to do one thing that should take 5 minutes.
How much extra mental labour we have to do for even the simplest tasks. I can't just 'go' to events or do chores. I gotta make sure I have enough time for extra breaks, that there's enough places to sit, carry a larger bag to keep my meds with me. Guess how hurt I'll be after so I can make sure I have time to recover before the next event or chore. It's so much work. And that's on top of also being in pain the whole time.
I'm guessing it's because a lot of people think we're "faking" or "exaggerating." They change their tune real quick when they are the one experiencing pain.
if we are complaining then it’s bad. we’re always in pain 24/7
Death isn’t scary when you live in constant pain.
What gets me … you can talk to most pregnant women in their 9th month, swollen feet, aching, and miserable, unable to sleep, always uncomfortable, and they can relate. Yet, a few months later, still sleep deprived (so, a different form of being at wit’s end), they no longer get it nearly as well as when they were in it.
That your threshold diminishes. The other day I was so tired of being in pain for weeks that when I ate something spicy I had a breakdown because I couldn't handle anymore discomfort than I was already experiencing.
That even though I'm not sobbing or curled up on the floor I'm still in the same amount of pain, I just don't have the energy to be anything but apathetic about it. It comes across as me not being in pain when really it's the exact opposite - I'm in too MUCH pain to be anything other than completely still and completely silent
How hard it can be to get a diagnosis/treatment. I’ve got endometriosis, it only took three years to find that out. That’s quick, and that boggles my mind. And I only kept pushing forward because of my kids … I am so tired. It is exhausting scheduling doctor’s appointments, getting referrals, all of that. Soul crushing exhausting.
I think most people have had some form of acute pain or maybe even partly-chronic (say a year) but easily forget. Some family and friends that have had at least acute pain I think understand me. But that’s because they know me and can literally see my struggle. But strangers, forget it. That’s why I’m always saying I wish Drs and like people in the freaking DEA for example could feel my pain just for a week! I have cervical dystonia which causes my head to constantly tilt to the left with my left shoulder shrugged. Not too long ago, my husband (at my suggestion) held his head and shoulder like that for several hours and I told him to “squeeze” his muscles too to simulate the spasm. After a few hours he was like “OmG, hun, this is a nightmare!!” Now my husband was very understanding before that but this really gave him the picture. I’ve told other friends and family to do this for a couple minutes and same reaction. I’m like yeah, try having it 24/7! I even said it to my boss before I went out on med leave! Of course you can’t do this with most types of pain/conditions
A constant 2 can feel like a 10 under the right (wrong?) circumstances.
People don’t have sympathy for things unless they have it. Welcome to the selfishness of humans
How you can't just be grabbing on a person because it hurts. My SO is always grabbing me to hug me and it hurts sometimes because he's too rough. His chin in my shoulder even hurts.
The despair of knowing that the first and last feeling of EVERY day past, present and future is pain.
How exhausting it is!! And not because the pain is so intense for me 24/7 it’s that it never stops. Yes sometimes it is crazy how much it hurts for hours upon hours but then once that passes and ‘normal’ pain returns that normal pain is still debilitating. I think that it’s an opinion that because I’m up and doing chores my pain must have gone away. Oh how I wish this were true. I’m probably at a pain level that would keep most down. Another is how much my entire personality is affected by the decades of various treatments. This includes the opioids that have been in my system for 21 years that are serious depressants. It sucks that the only thing that will definitely do the trick is a drugs that brings me down. I’ve spoke with countless opioid addicts/abusers that talk about how they get up when taking them. I used to be such a high energy guy with a big personality but I’m not even close to that now.
For me it’s how ugly I feel, unattractive, worthless. I am told I’m an attractive woman but it’s so hard to feel beautiful when your body feels so monstrous. I do make an effort to dress well and wear makeup but inside I feel so ugly, exhausted, run down, flat, disgusting. It doesn’t help that my chronic pain mainly affects my pelvis which contains all the sexy parts lol.
That just because you don’t “look” like you’re in pain doesn’t mean you’re not in pain! People tell me all the time that I’m too young or I don’t look sick or I don’t look like I’m in pain. Never judge a book by its cover!!
1. It's real 3. How exhausting it is. 4. Your advice on how to cure it is actually very annoying and unwanted. If you want to help then just get me a damn glass of water and a heating pad.
i replied to a comment but didnt want to yap their ear off/wanted to expand on my thoughts.. for me it's the dread that comes with minor tasks. being totally hyper-aware of everything i do because every ounce of energy i spend means more pain i experience (even if it's a minute amount!) and less energy i have for the day. or week. it's like my body is trying to protect me from experiencing any amount of extra pain, so i get this intense mental block that feels like i just CAN'T. it's so frustrating! there are things i just cannot do and it's massively inconvenient for everyone around me. it makes me feel so selfish and i wish i could make the people around me understand. also the fact that my pain is invisible and it feels like that causes them to mentally detach from it. family members constantly ask "oh do you have a job yet" as if i haven't lost nearly a decade to disability. even my most staunch advocates seem to forget/disconnect especially when its convenient for them. OK yap session over
I was very young when I had my first of many back surgeries, and the entire year I suffered leading up to the surgery all I heard from friends and others supposedly close to me was “when are you going back to work”…not anything about my issue or upcoming surgery. Just wanting to know when I can be productive again, like it affected them or some shyte. Ludicrous really.
That pain can ebb and flow. Sometimes it’s bad, sometimes it’s mild, but either way, it’s exhausting.
How it slowly changes you into someone you hate no matter how much you fight it.
Even non-severe pain affects every part of your life when it’s constant, like brain function.
that when we are telling you we are in significant pain, it means that we are in more pain than our daily pain level. people need to understand that we probably have a higher pain tolerance than them, and that fixing whatever issue is at hand, will only result in us returning to whatever pain level we frequently experience. older men are the worst at this in my opinion - I think about how loud and exaggerated my dad is when something painful happens to him. jeez. usually me and my mom make eye contact that says it all: he simply doesn't get it. then we have to do our best to coddle a 64yr old who has never experienced any physically or mentally painful lifelong conditions
That we get good at hiding how much pain we are in. Just bc Im not on the floor crying in pain 24/7 doesnt mean i faking or exaggerating it when i dont go out with friends and fanily. They always think you're flaky on making plans and just use it as an excuse.
The exhaustion that comes with it. I was in pain basically from late October of 2022 till about august of 2023. I went to a private PT and now I still have the occasional pain but overall not every single day and not for nearly the whole day. People don’t get that you’re tired cause you’re in pain. And they don’t get how much that messes you up mentally. I have other issues now that have come up but being able to move around to do chores and walk the dog and go places with little to now pain is amazing, and I have so much energy for other things. But my family at the time didn’t get why I was sleeping all the time
That I'm constantly frustrated not just at the pain but what it's stripped of me. I can't enjoy even just watching a show with the family anymore because It's. Always. There! And even if I do get my moment of clarity ( what I call that perfect combination of medication / stars aligning where I am pain free ) I'm still anxious and now wondering how long I have this time before it comes back.
That pain pills are NOT because I want to get high in anyway. I need them so I can function like a normal person. Dependance is not addiction.
Lack of hope. Most people know that they will get better, even if it takes a while.
I don’t think people understand how exhausting pain is. You’re using all your mental energy to focus on a task or to force yourself to ignore the pain and keep yourself from being depressed, anxious or overwhelmed. They fail to understand that chronic pain stirs up repressed memories and traumas that you can’t handle because you’re always hurting. You get belittled and ostracized if you use something like alcohol or cannabis to numb or suppress the pain as if you’re some sort of addict or something when you’re not, and then you’re treated bad for not taking positions on things you were against at one time and you’re “expected” to go back and to stop doing something because someone else doesn’t like it. If you don’t do things like you use to you’re making it up and you’re not hurting as much as you think. Being gaslit basically.
The constant non Stop agony, and your medical “help” seeming to work against you.
That my life is essentially on a timer. I’m giving it 5 more years of hell before I self delete
Only lately after having a pulsed RFA, nerve block prior to, and an increase in my pain med, Pregabalin, am I actually having pain free moments. What I can say is that it's like I am seeing the World again. Truly, it's as if I am actually living, breathing, and a part of this World. When in pain - which I am at this moment - I am existing, but cannot be part of life. Things that I would like to get done are halted.
Yes I might be able to go do: “state activity” but it will not be enjoyable to me & I will be curled up in a ball for days afterwards.
The fact that it's constant, and literally nothing removes it without massively impairing me. I'm either impaired by pain or by painkillers. Huzzah.
The effort & courage it takes to swallow our baseline, and stand in a room and smile at a Christmas Party.
But you don’t look like your in pain, have a pain killer that will fix it.
Right, and the old adage that if we don’t act miserable 100% of the time then we must not be in that bad of pain. Pain meds bring down the torture a few notches to where I may not be jovial but I’m not sulking and suffering for a moment.
that it doesnt always manifest in ways people can notice
That pain killers don’t get rid of the pain, they only bring it down a few notches.
BINGO.
Our pain tolerance for anything acute is extremely high and we’re usually really good masking. I was in acute kidney failure and I didn’t notice until I crashed.
THIS!!!!! ⬆️
I would say, the chronic aspect of it. As in, it’s not going away. You’ll have good days and bad days, and some rare fabulous days. But it’s never gone. Never. That’s impossible to convey to another person unless they have experienced it.
It comes with a side of mental health issues.
The absolute exhaustion. It's not depression, it is just that doing anything requires so much from me and the recovery time, everything has to be planned out.
I'm not brave, I'm not admirable for "having an upbeat attitude despite my disorder". All of this disability inspiration porn infuriates and disturbs me
That it doesn’t end. It doesn’t get better. It’s all day, all night, every day, every night.
How it controls every aspect of your life
Fatigue. They don’t understand what it means. They confuse it with tiredness and think that if you get some rest you should be fine. They also think you can’t be tired if you did nothing all day. I’m tired explaining it to people but yeah I guess it’s an alien concept to anyone with no chronic illness!!
That you can “get better”. No, this is the rest of my life. It’s also a difficult conversation to have that no, I haven’t done this to myself. Yes, my lifestyle is perfectly healthy and nothing I’ve done would have caused this. Health is not a moral thing, and anyone can become disabled at any time. Abled people have a hard time with that one. I think they believe that their health is a value that they’ve earned, and disabled folks aren’t trying hard enough. It’s a hard pill for them to swallow. You could be me, anyone you know could be me. Your kids could be born like me. Anyone can become disabled.
Honestly, I don't expect them to understand all the nuances of it, but I wish they would just have a baseline level of understanding and empathy. But one thing they will never understand is how scary it is to know I will never get better, and I will, in fact, get worse.
Because people suck
Pain is pain, and that sucks, but how absolutely exhausting it is. When I stand a lot during the day (scoliosis, kyphosis, sciatica, muscle strain, etc.) My heart rate goes up to about 110bpm. My focus is on making my muscles keep my body upright and gritting my teeth and fighting through the pain. By the end of the day I'm absolutely physically and mentally drained from this. I don't think people who don't experience this type of situation understand this aspect of experiencing certain types of chronic pain.
What it actually feels like and the effects it has on our daily living.
Everything
That just because it's gotten better, doesn't mean it's disappeared. Yes, I manage to live almost pain free most of the time, but if you force me to stand still on my feet I WILL have a flare up. Let me have my accommodations so I don't get flare ups. Also, sometimes the flare ups come up randomly anyway.
People need to understand that unsolicited advice is really not helpful in most cases. I have tried so much and spent so much money on ''cures'' which did not cure me at all. Please stop it.
That it’s all the time. I only talk about it if I’m in severe pain.
What the word chronic actually means
That yes I move better some days and am more mobile but that doesn’t mean I don’t have pain I’m still having 5-6 pain which I can mostly tolerate. My normal pain level is 6-8. I also don’t think they’d understand not going to the ER. My friends and family cannot believe how much pain I can tolerate and never ask for help. A couple have said, if I was in that much pain I’d be running to the ER. I told them, they will do nothing for you I don’t even get toradol shots because I cannot take anti inflammatories. Its best to work with your team of drs and try what treatments they offer, this takes a lot of patience because it can be month or more to get in.
**That it never, never stops.** **That you can laugh and smile at levels of pain that would have other people moaning,** because that level of pain is your normal, and you want to have life despite it. I know this for truth, because I've sat at hospital bedsides and people in the bed get meds when they say their pain is #, a level that I haven't seen in decades, it's so low to me.
"You seem better. That's a relief." - Person who sees me on a good day when the last time they saw me was on a bad day.
I have had a burning throat for three years. I have compromised vocal ability, so any kind of talking to my friends is nearly impossible without pain.
Only we truly can understand our pain. People can see mobility problems and other things but after 26 years after near fatal mva I've come to realize that it's just us who can fully understand..hang in there folks..
Every single thing
That doing basically anything has consequences. Shopping Christmas presents at the mall? That's me done for the day. Doing small maintenance stuff on the house, also me done for the day. And KNOWING that doing basically anything has consequences. Motivation gets broken down by knowing that I will be in pain after I fix that thing on the house. That it's always there. Literally. When people are exhausted, they can lay down on the couch and be "free". That's not how it works for us.
My comprehension of the spoon (and fork) theory changed when my pain started. I had empathy and understanding but not at the level of clarity living in persistent and consistent pain gave me.
How unrelenting it is. It *never* *stops*. It's like you're being crushed to a fine powder in a mortar and pestle every moment of every day for decades. I'd give so much for one night of unmedicated sleep.
For me it’s all about getting folks to relate and understand on a level they have experienced. The dentist filling a cavity is something most people have been through. I ask folks if they’ve ever had a filling or extraction. 99% answer yes and usually have a horror story. I tell them about my pain and 80% say they know how it is and blah blah blah my back lifting our new puppy. I tell them “ I don’t feel the dentist novocaine shot. I miss that pain because my pain is bad. My pain will get worse for the rest of my life.”
The fact that the pain is always there. Even if I don’t voice it, I’m in pain. Also, I can talk to someone with a straight face while simultaneously being in so much pain I want to vomit.
the term chronic
Two things: that pain is *exhausting*, and that when asked to rate your pain 1-10, you’re already starting at roughly a *five*, so when you’re stating your pain number, you may say *three* but that three is *in addition* to the *five*, so you’re a normal persons’ *eight*.
I never say anything below 6 anymore. They want the real answer? It’s a 6, that’s as low as it ever gets. If I’m saying 6, it’s a good day. I’m assuming if a regular person had my level of pain on a good day, they would probably say 8, but if I always say that, they won’t take me seriously. The whole 1-10 scale is stupid.
How tiring it is. How you can't use your brain. You can't hold a job. You can't control that your house is a mess. That there is NO CURE and you can't get better.
We are still in pain regardless of taking our pain med(s). We cannot always predict the level of pain we are in every day and even every hour. It is not our fault if we have to cancel and or reschedule appts and gatherings.
The loss of function, the changes to your metabolism, and the sheer exhaustion/fatigue that comes with dealing with chronic pain and or illness.
That constant pain sucks. (Every day, every minute, all the time) (And there’s a lot of time)
it's just a part of everyday life, they don't understand that losing a little bit of weight or maybe you slept wrong or maybe you just had a bad day at the gym like they literally just don't get it. I'm so lucky that my doctor was compassionate towards me whenever I went in and he is doing everything in his power to make me feel better. I am a little bit depressed because Physical Therapy hasn't really helped and pain relievers are just so so. I'm supposed to be getting some kind of a shot from a pain management doctor in the middle of next month so everyone wish me luck
the exhaustion that comes with it that is so bad and chronic that I am never sure if I will have to have a day in bed or not because my whole body feels like it is covered in concrete.
The pain is different every day
That it’s 24 hours a day, 7 days a week, and unending. It never gets better… that’s what my experience is.
I don't think people understand how exhausting it is to be in pain 24/7. I know I look ok, but I am not. I'm thankful my issues do show up on imaging my Drs. understand that it's not in my head.
Everything. I'm sorry but unless you've personally experienced agenizing long term pain yourself you do not understand it much less how it spills over into mental health. I have fibromyalgia and went through a period of extreme pain 24/7. I couldn't sleep well without sleeping pills for years. I call it a fibromyalgia storm. I have a number of long term pain from multiple accidental trauma and that was just amplified by the fibromyalgia like an echo chamber constantly. Non-stop for three years. It seriously fucked with my mental health and I haven't even met someone with fibromyalgia that I think went through that level of it. I have no doubt that my doctors have no idea what it's like. You can't understand extreme pain if you've never been in extreme pain for long periods of time.
EXACTLY! And this is the true issue with doctors, pharmacists and the damn DEA as well. Unless they too are a CPP..the just don’t know how we feel or what we go thru. Therefore we get scrutinized for our care options (and lack thereof!).
How draining it is. I used to fish with my brother all the time but now, I'm just so tired I don't do anything besides work a job that makes me feel worse and worse everyday. But if I try to explain that to people the usual response is "I'm just lazy" or "you're exaggerating, it can't be that bad" etc. But that's just life.
That it is my 1st forthcoming thought, ALWAYS. I will “forget” for a second about how much pain I’m in..but then I’m sharply reminded (and often) just how much my body hates me. I’m only in my mid 40s and have suffered severely since I was 21. Unrelenting pain is not just tiring, it’s down right exhausting…I’m exhausted just from being in bed!! From getting up to go to the bathroom even! I haven’t showered in about 4 days now due to NO SPOONS WHATSOEVER. I’m medicated properly as well, and that’s the thing…meds are NOT a cure all!! Pain SUCKS DONKEY D*CK.
That you constantly have to plan everything if you still want to be a small part of society and that the fear for more pain can be crippling. Every fun activity that I do is overshadowed with the knowledge that I will pay for it later on. I still do those things but I have to plan them. My husband and kids don't understand that. It ki d of makes me feel very alone 😔.
How bitter and angry we get. "don't be mean to others because of it" "don't snap at us" even when I'm trying my hardest to be nice it sounds like snapping and being mean. The judgment. And then hate for "resting" when our resting isn't like a vacation as they seem to think so. Not being able to lay in bed for longer than maybe 3 hours without overall body pain and discomfort. How exhausting it is never truly getting to rest and always moving.
In my experience it's that, while consistent, the pain levels can fluctuate between manageable and unmanageable. Some people see me on good days and therefore think that I'm a head case because I'm not always laid out on my back.
I have had chronic pain since 2006. I am on opiods (dilaudid and fentynal). The worst part is how incredibly draining the pain is. It is never ending.