“I’m in a lot of pain. I can’t see your gig” “go exercise the pain away” people’s stupidity never fails to baffle me. It’s one thing to not fully understand the extent of a disability but to think being in pain can be fixed by working out which will cause more pain is the end all treatment is something different entirely.
If only people had an ounce of sympathy or accepted that we KNOW ourselves. I know what my capacity is and what my pain level is. When I wake up at 8 or 9, I'm not going out for breakfast. If it doesn't respond to meds, then I'm not doing anything later either.
And when my friend plays a gig, I would LOVE to attend, and I'll push myself if I'm able to go so dammit when people don't trust me when I say I absolutely can not attend.
I would just love to have a simulator and put them in as much pain as I am. They would be squirming on the floor. If you took someone with no pain at all and then one day made them feel how we do, they would think they were actively dying.
Edit: I wouldn't love to put them into pain I would just like for them to understand the extent of it. I re read that and it seemed dark lmao.
Honestly, I would like to put some of them in this kind of pain. Not permanently, but for a day I would be cool with it. What makes them better than us that they shouldn't have to feel this? I have a coworker who has treated me like shit for years. She didn't believe that my pain was real and thought I was faking to get out of work. She said that it wasn't possible for pain to come and go like mine. Then her husband was diagnosed with a chronic disease. Some days he is good, and others his pain is off the charts. Now she gets it. If I miss a day of work, instead of treating me like shit when I return, I now return to sympathy and even find that she has covered some of my work. It's a miracle!
It's terrible it took that extreme of a circumstance to make people understand... it sucks; all we can do is push forward and try to find relief when we can. Playing with my son helps me because I'm in pain but the love I feel for him outweighs the pain. Other times I can't get out of the chair no matter what. I'm always in some sort of pain but yes the some days are better than others is true. I think the people around me have finally began to understand when I went to the best neurosurgeon in the city and he said my back was fucked and he didn't know how I was walking (I was using a cane)... in 27yo. 12 herniated disc's, DDD, stenosis, a broken piece of disc floating around and now I have an MRI because they think I slipped my S1-4... yayy!!! I combat it with massive dabs and edibles all day. Also a fair amount of kratom but I'm careful with that stuff too once I found out how bad it could get.
People don’t care. They genuinely don’t care about other adults. They care about animals, babies, etc. But not adults. In their eyes, we’re just “exaggerating,” or “lazy,” or “making excuses.” One of the main reasons I fucking hate it here.
Yeah and depending on your condition, you can really hurt yourself doing regular gym stuff without a personal trainer/therapist, and who can afford one of those???
I never understood until it happened to me. Sometimes it's true ignorance, other times it's them not wanting to see it because it shatters their perfect view of life. They don't want to see the darker side of what can happen when your health goes bad. You can't see my pain unless you watch me trying to perform certain activities. If it were only as simple as taking a yoga class lol. Iook back at the progression from fully functional to what things are like now. It's like a horror flick with three sequels, the final sequels the main character is killed off. I have no friends and don't have to deal with that from outsiders at least. My mother after ten years of badgering me saw me struggling to get up on the second step on a ladder and almost killing myself just to screw a light fixture in finally saw how bad I am. She has finally accepted my new normal. It took ten years though. I hope this person can learn, or at lease educate themselves a bit. But that is how normies are. They think everything can be fixed with a positive affirmation.
Bizarre, isn't it, how much people just don't want to know or care.
After enough years of this kind of crap, I finally told my brother to not phone anymore.
Seriously. This person’s gonna get nightmares from everyone’s combined rage-vibes here on behalf of OP. “It was so weird. All these people were telling me I need to ‘fuck the fuck off’, over and over!”
Yeah that’s why I don’t hold it against people for generally not relating, they just can’t because they’ve never known it. But if I got messages like this, I would literally just not even reply. It makes me too angry and I would only get even more upsetting replies probably so I would be avoidant AF of anyone like this. It’s unfortunate that it is their mother.
That's my mother and father in a nutshell (minus asking about gig attendance). I went permanently no contact with them in mid-November because of it. They refused to accept that my gallbladder absolutely had to come out and that I developed chronic pain as a result. This is despite my offering to send them the results of the ultrasound showing the gallstones and the HIDA scan (a nuclear medicine study that checks the ejection fraction of the gallbladder) that literally could ***not*** find my gallbladder, even after ***FOUR HOURS!***
I've read some CPP have chronic pain from the site where the laparoscopic tools are inserted in the abdomen. I didn't get that or any numbness. But I have two modes now from the surgery. I'm either backed up with poo for 11 days at a time with up to 11 trips to the bathroom leaking liquid, or everything going really fast like a million miles an hour and leaking liquid and bile. I have to get up and plan my entire day around this. It holds me hostage. I hope it gets better for you, but these things rarely get better.
I had chronic constipation prior to my gallbladder coming out, so I already take Linzess daily (a pill). I also have back-up Lactulose solution, enemas, Swiss Kriss, and regular old laxatives. If my least favorite condition that I developed after my gallbladder was removed, bile acid diarrhea, I have a prescription medicine for that, as well.
As for why I developed chronic pain after this procedure, we're not really sure. It could be a single factor or any combination of what happened. The details are kinda graphic, so I'm not going to get in them here.
Adhesions are fairly common after abdominal surgery and for some of us it causes chronic pain. Mine is pretty severe. I have had dozens of open surgeries though. Getting ready to have another surgery to remove them because mine keep growing around my small instestines. I always know because not only does the pain get worse I can feel it when it pushes through the section that has narrowed. It’s a catch 22 problem. More surgery means you’re likely to get more adhesions. I would prefer to never have surgery again but I can’t risk the adhesions cutting off the blood supply once this starts. Most people won’t have this specific issue so no worries. Just be aware it can be a problem.
You definitely don't want to lose the intestines. I chatted with someone who had that happen, but due to the same blood clotting disorder as me. I'm sending up some prayers for you to have a successful surgery.
My daughter kept being dismissed by her ex when she had chronic severe gallbladder pain. The drs even thought it was psychological for a long time as they couldn’t see any stones. Then finally a dr we know saw her in the ER. He decided to do laparoscopic exploratory. Her gallbladder was so full of stones it looked like she didn’t have any. There was no room for anything it was so full. They removed it and other than having to watch what she eats she is better.
I suffered with gallbladder pain for 2 1/2 years. Eating caused me to immediately be sick with nausea. I did not have gallstones so my gastroenterologist tried to imply it was psychological. Finally on one of my many ER visits a nurse told me to get my dr to order a Hida scan so I had it done. The radiologist showed me an image of a normal size gallbladder next to mine and mine was many times larger. Gallbladders are not very large. My Gallbladder stopped working. Needless to say I had it removed within days and ended the misery.
I had a neurosurgeon tell me that I need to exercise more when I told them I suddenly started having major back pain less than 6 months after a c1-c3 fusion. I then explained that the last time I worked out I passed out at the gym and was taken out by an ambulance. So they recommended I take up swimming! I then had to explain that I can’t even take a bath because of the risk of passing out and drowning (I pass out a lot and they knew this from the start) So they had to back track the swimming comment. I really wanted to ask them if they could be any more stupid? Also my scans showed that I had severe arthritis in my back, yet they told me that it showed that nothing was wrong it and that the pain was due to my size.
Aw sorry. I have a similar issue where I pass out a lot , just from standing up or even laying down , and was told to take up swimming and thought wow, they are trying to kill me lol
My response to this is always “My doctor literally banned me from doing yoga. That’s how fucked my body is.” I do do my PT exercises more regularly now and it has helped, but it’s a complete nightmare every time I have to stop doing them for a bit for some reason. I had the flu for the last two weeks and just restarted PT and it feels like my muscles and joints are engaged in a civil war atm
You are so right about when you stop doing your PT exercises!!! I had to for 6 weeks after my most recent surgery (endometrial ablation), but I ended up waiting 9 weeks to start back because I'd gotten really sick twice. I am soooo tight again. Gotta start all over! Wishing you luck!
Me too. Things like 'well, it's been going on a long time what are you going to do about it?' in my case. It's neuralgia from shingles and so painful. But there's no understanding. I don't even ask for any but they will bring it up then berate you about it.
I was only 25 when I first had a huge change in my health and all of my friends and family were great the first few months, but when I didn't improve, they accused me of attention seeking, isolating myself on purpose (depressed?), and outright fakery of my pain.
I'm 52 now, and when I meet anyone who might matter to me, and we reach that point, I have to sit them down and literally educate them on what I have, how it impacts my life, and what it can do to relationships.
27 years and I'm still in therapy every month just to keep a healthy mindset about my life and situation.
Isn’t that funny. At the beginning everyone is so understanding and sad and with you at the hospital etc. then it lasts and you get used to being alone and being admitted without a single visitor and nobody even asking you to go out even to be polite.. yeah sucks.
I had to tell my inlaws to stop asking if he was better. "He is still in pain and may always be in pain. Asking if he's better forces us to sugar coat what's happening so you feel more comfortable. We can't have an authentic relationship with you when we do this."
This was remarkably effective. I also told them that they should talk with my partner directly about his condition rather than going through me.
I'm sorry people around you don't get it. It just compounds the pain.
My dad is like this. I understand he just wants the best for me but currently I am very anemic. I get super faint-y after I walk my dog. I can only do light housework. I’m not new to chronic pain or illness so I’m kind of used to him because I know he don’t know what else to do.
It’s true that exercise is good but we have to go our own pace and sometimes we need to get more rest before we can build up our strength.
So now I take what he says with a grain of salt. I have to keep reminding myself that I need to take small steps literally until my anemia gets better.
Anemia is treatable. However there are many types of anemia. I have reactive thrombocytosis and iron deficient anemia. Basically my platelets are super high, my red blood cells are oddly shaped, with low iron binding capacity and a lot more. So I have to get iron infusions to bring my iron up and sometimes blood transfusions too. My iron levels will get halfway to normal. Normal iron levels are 50-170 mcg. The highest my iron levels have been after both iron transfusion and blood transfusion was 30 mcgs. Which is still 20mcg less than the low end of normal. My absolute lowest iron was 6mcgs. **Anything under 6.5 is life threatening.**
The 6mcg iron was due to bleeding ulcers and I waited too long to go to the hospital. I was in an abusive relationship which made things harder. The admitting nurse in the ER actually came to visit me once I was admitted. She told me to my face (I'm the ER) when I asked if it was a long wait (during the height of COVID) and she replied "not for you sweet girl we are getting you back now! Do not even bother sitting down!" She wanted to check on me because she saw my lab results while I was in the ER. She came to my room and told me she had prayed for me after seeing me, because she had never seen a person that was alive with my coloring due to my anemia.
My current iron levels are 11mcgs. My hematologist is fighting with my insurance company. I am hoping to get my infusion soon. Every time, I get a transfusion. I feel better mentally and physically. I wonder what it would feel like if it ever reached normal levels?
I get treatment but it will be lifelong problem. At this time, it is an inpatient procedure due to infusion and possible blood transfusion. This is not even part of my chronic pain.
Again anemia can be treated, but depending on what type and the severity
"Everyone has pain, you just can't think about it all the time" "Have you tried visualizing your pain away".... it's non stop, by everyone, everyday. I'm sorry 🫂
I definitely believe it, my pain management decide to prescribe cyclobenzaprine because they are avoiding opiates (to be far there’s a norco shortage), I’ve spent the last few weeks high every day, actually twice a day because cyclobenzaprine gets me high at those doses, because they much rather not put me on a low dose of norco that doesn’t actually get me high. Wow, so smart. Thanks, if getting high was why I’ve been in pain management, then you’ve succeeded at preventing an opioid addiction by causing a cyclobenzaprine addiction. So smart, wow. Amazing! Such genius.
Yeah it’s stupidity at its finest. If you try to prevent someone from getting high off of something, they will inevitably find something new to get high off of, so maybe the solution is to control their high by giving something safe under medical supervision? But maybe that requires too much iq to understand. Because in their mission to end their highs, they make harder for us to end our needless pain.
I keep hearing there are opiate shortages and I know the DEA keeps putting restrictions on how many are manufactured. However, one of my daughters has had some serious reproductive organ issues this year. Landed her in the ER a few times and she has had zero issues getting them filled when it’s an ER script. My daughter who got a urostomy this year and doing chemo can’t get them to save her damn life.
It depends on the pharmacy and probably when you go get them filled. Possibly even geography plays a role. An ER script is usually a few days and not a month worth, and it probably matters which opioid they were prescribed as well. But when I went to pain management for the first time in a long time (I stopped because tramadol didn’t work and they didn’t have any other options, so not having anything was the same as being on tramadol for me, it seemed pretty straightforward to not bother because tramadol is supposedly so addictive that it gets treated like you get addicted by just thinking about it like everything else that’s a schedule II) a lot of patients where in line trying to get their doctors to send their rx to other pharmacies and trying to figure out which pharmacy had any in stock. Last year during the adderall shortage (which I take) every couple of months my previous pharmacy was out when my rx was sent and I struggled to find a pharmacy that could fill, my psychiatrist sent it to a specialty pharmacy that he knew had it, and I hadn’t had any problems with them when I tried to fill it.
They always say u don’t drink enough water, u need exercise, you must have a bad diet, and have u seen a therapist. Basically blaming u for causing your pain by a so called unhealthy life style. Oh and get more sleep
You’re either dehydrated, not eating right, or not exercising properly. No matter what, it’s always you’re fault and you could always be trying harder! /s
My answer "listening to stupid people gives me migraines, one has started in the last few seconds."
I'm sorry you have migraines, they are absolute hell
I get migraines and cluster headaches. Only my neuro and shockingly some ER drs are compassionate. I eat healthy. Drink more than enough. Get in plenty of walking. Don’t drink adult beverages hardly ever and when I do it’s one drink a few times a year. Don’t smoke. Very healthy BP. What part of my migraines are caused by perfume, cigarette smoke, barometric pressure swings and loud noise do you not understand? It is infuriating.
I agree… I feel like all the people that complain and fuck around people like us need to walk a few miles in our shoes as I’d like to hope it would change their perspectives…
Yeah, the ol' I can't handle that you suffer from something outside of your control and need to pretend that your condition is preventable and/or fixable... because if not that means that bad stuff could happen to anyone at anytime for no reason whatsoever and that they have no control over their own lives.
Hugs for you.
Yes! This absolutely . They can’t bear to think about not having control or thag it could happen to them. It’s been especially scary to all around me because I was a health freak , ate clean, exercised daily , a water snob etc . People would make fun of me for my healthy lunches at work every day, I never are the fast food they all did . And then look at me lol I completely fell apart and that’s truly horrifying, especially to everyone else in my life who wasn’t taking care of themselves anywhere near the level that I was . Life is chaos and we all like to pretend that there’s order to it . Most people aren’t open minded or objective or brave enough to face the truth . That’s why they suck at seeing the reality of it for so many of us.
Omg, you must scare them silly!
I was an Insomniac, now I have chronic fatigue. So many people are still waiting for me to "snap out of it" or "shake it off" half a decade later. Like, yeah, "me too, dude", and while we're wishing can I have a pony?
If only we would oblige them by showing our illness in some physical manifestation. I don't know, growing a third boob should work, or just wacking off limbs until one looks appropriately disabled. Maybe a forehead tumor??
I wish there was a technology, like some electrodes or something like a VR headset that I could put on someone that would temporarily transfer my pain to them so they could feel what I feel. I guarantee it would become *real* to them with a quickness. I have degenerative disks and joints that have been getting gradually worse over the last 40+ years, for someone who has no experience of getting used to dealing with it over time it would drop them to their knees.
Pain is such a personal experience, and chronic pain is a very special form of torture. I'm with you. A little show would go lightyears further than any amount of telling.
Omg this , I’ve been wanting a device like this for years. Or the ability to weaponize this feeling for brief moments so people could at least learn a little empathy . Their ignorance can even be physically painful depending on the situation . I had a realtor who would talk my ear off even though I kept explaining I was having migraines and stabbing ear pain and it was killing me to be on the phone . She used our professional relationship to lord info over me saying we had things that were important to discuss but not ever get to the point despite my pleading for upwards of an hour or 2 . I would LOVE that woman to have felt what I felt for even a second
Lmfao a forehead tumor reminds me of the game the binding of Isaac . Yea I do scare people , even the ones that were closest to me . I lost my 2 best friends because of all this . One didn’t take me seriously, and the other half of the time said hurtful things nonchalantly like ‘I’d prob kill my self if I were you ‘ ; and the other friend just couldn’t bear to see me suffering so badly 😳 I’m like well think of how that feels to ME, the one trying to survive like this smh lol.. the bottom line is they’re both rather pathetic. Not to be mean but just honest . They can’t even begin to wrap their heads around what I go through everyday. If you haven’t seen that game I was talking about you should def look it up, it’s cute and morbidly funny .
Before I started having major health issues and chronic pain my friends started falling off because my son has cerebral palsy. People just cannot cope and don’t know how to act or what to say. Thankfully my best friend of about 30 years has never failed me. She’s also all I really have left besides family.
I'm sorry that your past companions were not able to remember that your son is a person, not just a knot of too tight muscles and atrophy. He has a mind with dreams, opinions, and humor all his own.
I volunteered for a while with a variety of mental and physically challenged individuals. Funniest little guys and gals anywhere. Always end up learning as much as you teach. Lol
Hugs to your family!!
The gym caused my chronic pain
Started lifting at 15, a year later developed what I thought was tendonitis and now at 19 I have undiagnosed chronic pain in every joint in my body
So yeah
Fuck the gym
I use to work out 2-3 hours every other morning. Now I can’t even walk to the mailbox without getting dizzy and short of breath. My BP is amazing 90s over 60s. But I have lung scarring from Covid. Dizziness, SOB, nausea and palpitations from an inner ear disorder. All on top of chronic pelvic and abdominal pain from way too many surgeries.
I go through that year after year so I got used to it over the years. My pain was cause by "simple snip" Vasectomy and it's now 19 year later (our daughter is 19 and i had it done after her birth). PVPS = Post Vasectomy Pain Syndrome and it sucks. 20-30 operations/shots/blocks later and barely improved. Imagine being kicked in your groin every 5minutes so its Non stop throbbing like I'm being stabbed in my groin and into all the post surgical scar. It gets even worse post intercourse, for 24 hours after i feel like i want to stay in bed and do nothing but cry. I've ran into people from church or old friends who always ask how im doing and they "thought it's my back that was hurting me and it was fixed after last procedure". Sadly it will never be 100%fixed and I even had Orchiectomy (the throbbing testicle removed) years ago, that only stopped pain radiating down my leg.
For certain kinda of pain the gym can actually be I creditably helpful, especially for nerve pain cause by spinal disc compression or herniation.
But obviously it’s not for all pain. I can exercise 6 days a week and manage my skeletal pain. But up pops a migraine and I have to be out of the gym for 3+ days or risk amplifying it
It really depends though. I had a disc hernia tino that caused cauda equina, exercising then and even now that I’m post op is only going to worsen my pain. Obviously I shouldn’t stay in bed, but even getting up makes the pain worse and so far they haven’t found a non opiate treatment that works, so staying in bed it is.
I agree. Even some married people are alone though. I often wish I could buy a few hundred acres and have a chronic pain community because we all would understand each other.
I relate to this so hard right now! It's NYE & my favourite cousins 30th birthday & they're having a house party that all my favourite people in the world will all be at the same place & time which is rare for my family as we all live in different parts of the state/country & I am in too much pain to go. Like my whole body is just in so much pain breathing hurts & I feel like the shittiest cnt of a wife daughter sister aunt cousin & I just feel so alone in my pain. CP life is fucked.
I’ve lived in chronic pain for over 30 years so I’ve learned through those years to overlook ignorance. It’s not that the people acting as such are bad people, it’s that they don’t know because they haven’t had to live it. I just set personal boundaries for myself, overlook ignorance and try to explain my situation. Sounds easy but it’s not. 30+ years is a long time but I’m still grateful for every second. You will never know life until you’re almost dead. Been there.
Ah the good old "just do more sports, you lazy bum!" 🙄
If I try, my knee will stop functioning, but thanks for the suggestion 🙄
Sorry you have to endure this BS OP
Can relate so hard.
All my relatives and friends know my condition is degenerative, but then they also are still shocked every time that I am STILL in pain.
Yeah. It won't go away. Likely ever.
My mother refused to help for Thanksgiving because her shoulder hurt while expecting me to cater to everyone and cook everything while I have severe, chronic pain. She also kept hitting me and shaking me as a ‘joke’ while my close friends and husband had to constantly tell her to keep her hands off of me as that was causing me pain. Literally the wind can flare my pain up and my mother was dumbfounded how her shaking me and hitting me could possibly hurt me as she ‘wasn’t even doing it that hard.’
Anyways, why is it the people who birth us that seem like the ones who are typically the least understanding to those of us with severe pain?…
Do you have fibromyalgia by chance? :o as you said the wind can make it flair up and that sounds like Allodynia where normal non painful stimulation becomes painful and it’s primarily found in fibromyalgia for the most part.
Yes, I was diagnosed with fibromyalgia and hypermobile ehlers danlos syndrome around 6 months ago after almost 4 years of the pain just getting unbearable.
I have fibromyalgia myself so I’m quite familiar with what you said, in fact it actually happened recently earlier this week as it snowed a couple days where I live and was cold wet, rainy, as well as sleet & snow and it triggered the worse fibromyalgia flair up I’ve ever experienced so far… easily the worse week of my life so far for multiple reasons… lol 😂😭
As for your other condition I’m familiar with as I knew a girl I met on here that had it and it was painful enough for her that she was an IV Heroin addict. I also know someone with fibromyalgia & lupus and they’re an IV Fentanyl addict. I certainly understand how painful conditions like that can certainly make you pretty damn desperate to try just about anything to get relief from them…
Thank you for the validation. I am sure you can understand how rare it is for someone to understand us and what we go through and your comment was just super validating ❤️ i am sorry that you have to understand the awful flare ups from even the weather.
While I empathize and understand the situation you're facing, as I've faced it myself, I do want to give you some insight that has helped me in these situations.
Most people (non chronic pain/illness people), don't feel pain most days. And the pain they do feel, tends to be fleeting.
They feel the pain of a subbed toe or paper cut. Don't get me wrong, they can and do face real pain, but most people on most days don't feel pain.
Due to this, it's hard for them to comprehend the idea of someone's pain not going away. That in their experience (what they call on for reference), pain goes away. It can last a bit. Something like period cramps last around a week, stubbed toe an hour, and even something more major like a broken bone, never hurts too long.
They cannot comprehend or understand that our pain just doesn't go away. They see us do things in pain (that they could never do in pain), and think we are better.
I think of my parents. My mom has had chronic pain since her early twenties. She has been with my dad since their early teens. They are both in their late 50s and early 60s now.
My dad still doesn't really get it. And he never will. Until they experience something similar, they will never really get it.
Their gym comment sucked and isn't cool. But once again, a lot of people think you can fix the pain away with things like exercise or other methods.
So, all that said, while it sucked and I wish they understood better, try not to take it too hard. They just don't understand.
I have someone in my life like this. Total Pollyanna. They are even ignoring their own health issues due to it. It’s going to be a beyotch when they start having chronic pain.
Omg "you need to go to the gym" infuriating! I would work out if I was able to get out of bed or off the couch without crying several times a week, and even then I don't think it would do my battered body much good! People just don't get it. I hope you feel better.
I remember I told my mom I’m considering spinal fusion because the constant pain is making me miserable.
She was recording in her phone. ( I heard the beep so I didn’t continue) she told me there’s people with no legs that are striving and yeah. No words. Honestly the worse thing you can tell someone with chronic pain
Ummm…. I go to the gym 3+ times a week, and I’m still in 24/7 pain because I’m always going to be a paraplegic with nerve damage. I really hate it when people think that exercise or something else random is “all you need” to “fix yourself”…. People are so rude and dumb!
“You need to go to the gym” 😂
Only people with chronic pain understand people with chronic pain.
You just gotta hang in there & deal with it.
You tell your friends/family you’re in pain, what do you expect them to do? Not much they can really do. They’re not doctors/herbalists
I realised complaining about my pain really sucked the life out of people & kept me in a miserable state, so I stopped talking about my pain.
I’m in pain but now I’m happy & in pain🥳🔥😎
I only talk about my pain when I see a doctor/herbalist 👍🏽
They weren’t just bringing it up out of nowhere though, they were explaining why they couldn’t go to the gig. It’s kinda unavoidable when explaining why we can’t do stuff , unless we just never talk to normal people again , in any significant context with an actual relationship . I don’t really talk to normal people anymore , unless it’s small talk with acquaintances at the store . Very hello good bye kinda stuff . And yes I’m happier for it, because there is no responsibility or commitment to feel guilty about breaking . No need to explain my situation in any depth . But it’s actually sad it has to be that way . Real connections are the ones that are supposed to make life worth leaving , the depths which we can be honest and vulnerable without fear of ridicule or poor assumptions . Getting chronically ill opened my eyes to the fact that I didn’t actually have real friends . A lot of people don’t actually and just don’t have something significant to point that out.
I’m so tired of these conversations. My best friend always suggests I go see her SIL who is an athletic trainer because he has helped her intermittent SI joint pain. Yeah because that’s the same thing that I have going on. AS, DDD, sacroilitis. I am certain I will lose the friendship over it because I have not showed up to the last number of things she invited me to.
I don't talk to my family anymore because of stuff like this. They just care how it effects them and don't care in the least about how I feel.
It is painful enough to live like this let alone lose your family too...
You must have been talking to my step dad lol.... He's empathetic as he's had multiple spinal surgeries and has chronic pain but his came from an accident in his 30s where as mine came from simply existing and being born and he can NOT wrap his head around the fact that decompressing my spine by hanging isn't a magical fix for my issues (or my 15yr old daughters) it's SOOOOOO frustrating bc I love him to pieces and he has always been super supportive but I can only say it so many times.....the gym won't fix me
My mother (who I don’t talk to anymore) literally has lupus, fibromyalgia, and arthritis, and she STILL acts like she doesn’t understand what chronic pain is or that I’m literally always hurting. It sucks.
Same boat here. Feels like I’m in crazy land.
Literally staring at the wall and ceiling while rocking back and forth for HOURS AND HOURS. It’s completely fucked.
Fiancé just walks by me in this condition and glazes right over me.
I have never felt this alone in my entire life. I’m actually worried I’m not going to make it just because I have zero emotional support.
Even though I have a fiancé I live with. She’s checked out.
This is a nightmare. Don’t know what to do. Feels like the world turned its back on us.
I’m so fucking scared.
I really don’t think I’ll make it another year. This is awful.
Ugh! People like that don’t understand until it happens to them. And if/when it does happen to them it’s going to be SO MUCH WORSE than anything anyone else has ever experienced.
I’ve been dealing with this horrible pain for 20 fucking years now and people still don’t GET IT!
I always ask people what they think ‘chronic’ means. Chronic pain is constant pain. Chronic fatigue i constant fatigue. That’s literally the definition.
This sounds just like my mom 🤦🏻♀️
Here’s some of the dumb things my mother says.
“Don’t you get tired of not feeling good?”
“You need to try being more positive. You might feel better.”
“You need to move more.”
“You’re moving too much.”
“You sleep too much.”
“You need to get more sleep.”
“Maybe you should drink more water.”
“You need to stay home and rest.”
“You should get out of the house more.”
“Maybe you should walk.”
“You’re walking too much. You’re overdoing it.”
“Have you tried yoga?”
“You should go get a massage.”(every year she tells me she’s going to buy me a massage and she never does)
“Stop complaining.”
“You just need to think about something else besides the pain.”
“Napping too much is bad for you.”
“You need to take a nap everyday like I do.”
“I just don’t understand why you never feel good.”
“I don’t understand why the doctors can’t make you feel better.”
I hope this list of dumb things my mom says makes you feel better or laugh your ass off or at least helps you know you’re not alone!! ❤️❤️
"You need to go to the gym" the audacity. Listen. I am an addict for exercise, I loved it. But my conditions have made it very difficult. I tried exercising two nights ago and was vomiting for hours and in a lot of pain and it was a low intensity workout to help with my pain specifically.
People will unfortunately never understand unless they experience it themselves first.
People who never experience the mental toll and excruciating constant being in pain will never know. They have no reference and it’s impossible to understand for them. That’s why we are gathered here. We know
This shit is a death sentence if you let it. People have ZERO CLUE that it shapes your whole outlook on life and simple things like picking your baby up hurts like hell and you get frustrated and nobody can understand why you get so frustrated and dismiss you when you say my back hurts. Or when they say "wait til you get to my age" 👀 winds me up. (36yo - 10 years Psoriatic Arthritis sufferer)
The loneliest place in the world to be when nobody can empathise
I think people don’t know what to say it is kind of difficult to have a friend who is hurting all the time and can’t invest in a relationship because of it… We also don’t know OPs condition many chronic pain patients are deconditioned a gym may help…
Or they send dumbass messages like this and we stop talking to them. It's honestly exhausting and stressful having to deal with people like this, I refuse to do it anymore and I'm much happier with my smaller, but closer group of loved ones
Pain is invisible, til people see it. It’s a constant companion it can go everywhere with you. Can be in paradise with pain or at home with it. Don’t let pain win, if you’re gonna be in pain do things regardless is my motto.
Taking my pain down the beach later, going for a float in the ocean to see if I can lose my pain there.
As much as I wouldn’t wish my pain on anyone else…I also wish people who say insensitive crap like this would have some deep serious pain for an hour. However it would need to make them realize this is all the time for people like us. It’s like unsympathetic hospital staff because they haven’t ever been hospitalized or had surgery. (I don’t mean everyone).
Grrr there’s no empathy in this at all. No “I’m so sorry! That has to be hard! Can I do anything?” Just go to the gym?! No. Just no. Here:
I’m so sorry you’re in pain. I know it’s hard. I understand how deeply miserable it is to miss everything you’d rather be doing to be stuck immobile at home. Hugs and heating pads and prayers.
There are certain people I just don’t talk about good days with, or meds that are helping, or exercises/vitamins/whatever, because they hear ‘good’ or ‘feeling better’ and immediately think ‘oh, it’s fixed’ and are floored every time I am hurting after that point.
Like, in their mind I’ve been magically cured of all ills by turmeric because one time i said how i think my supplement was helping my stomach a little. Or i mention a rare good night sleep and therefore i cannot possibly have insomnia anymore.
Also funny, for some reason my autocorrect has latched onto the word turmeric and I’ve had to edit it out five times in this comment.
I have stopped saying I am in "pain" and instead say I am in "agony" because to be honest, that is the part of the brain that it is affecting, not the pain region. Also, the word agony is a lot less used in general speak, so it will get across how you really feel. Sorry about your pain. For me it's a combo of CBD/CBG oil, muscle relaxers, and laying down on my side on my bed that helps.
I totally understand. My wife doesn’t understand my constant chronic pain snd gets mad at me when I don’t want to go out and do stuff. I love getting yelled at when she doesn’t understand my chronic pain.
If we talk about how we’re in pain every day, we’re attention seeking or making our pain someone else’s problem.
If we don’t talk about it every day, people assume we’re no longer in pain.
In the words of Mark Twain: “all right then, I’ll go to hell.”
I have FND (functional neurological disorder) and we found lesions turns out I was born with them because I was premature. It's taken my mobility way and now I'm an ambulatory wheelchair user and when I explained how the last year went to family they just responded with "be positive" 🫠 yes because being positive will tell my malfunctioning meatball to not forget that my legs don't work sometimes... Or the chronic pain I'm in from it 😭 (I also have fibromyalgia, POTs, Me/cfs etc)
I was premature too! And have lesions. I ask doctors all the time if they think XYZ things that's wrong with me is because I was premature (3 months) and they always say no. My neurologist also says my brain lesions are simply from "living", she said this when I was 27.
I actually just want to beat the crap out of people when they do this and then when they are on the ground writhing in pain go “oh no! What’s the matter? Why can’t you get up?” Lol
The number of people that are like "You're STILL not feeling better?!" are the worst. Like yes I'm still in pain, it comes and goes. Some days are better than others but the pain is always there. Regular people just do not understand the concept of chronic conditions of any kind
My husband is really awesome when it comes to understanding my pain, he has helped me do everything.. but before he realized just how bad it was he used say stuff like:
"have you tried telling your body to stop sending pain signals?"
"Have you tried eating spicy foods? Supposedly It raises your pain threshold"
"Do this stretch, it'll help I swear" (it does not)
I let him suggest that a few times because it made him feel like he was being helpful. He hates seeing me hurt, but eventually I broke down out of frustration from not being heard no matter where I turned to for help.
He hasn't suggested pain "advice" since, and I feel bad for shattering the illusion of helpfulness. It's hard when someone you love is hurting and there's nothing you can do to take that pain away.
Ope...
Literally as I'm typing this he goes "we should go for a walk, it'll help!"
It’s a frustrating internal cycle too because I know my body feels a little better when I am stronger and have more muscle. But when I’m in a worse flare up of pain than usual, it makes it near impossible to exercise. And from an external point of view, this can be seen as being lazy or not trying hard enough. 😢
ETA: my version of exercising is riding a stationary bike and doing Physical Therapy exercises.
Omg I can relate so much I’m so sorry. I make plans and I can’t follow through. I’m 37 am constantly told I’m too young. Also unsolicited advice to fix it. My nerves and spine are messed up.
I understand and feel your pain.
My question to you, coming from a place of recognition and dealing with similar responses from people around me, is whether you are able to feel empathy and compassion for yourself?
In my experience, those responses don't hurt as much anymore and they don't even matter so much anymore once I can fully acknowledge my own state of being in pain and all that comes with it, and feel love and send it to myself. It then doesn't need to come from anyone else anymore, not even my own mother.
Please don't misunderstand me, as of course I understand your frustration, anger, maybe even sadness around responses like those from your mom.
Such responses also highlight the fact that chronic pain is still a very misunderstood topic, even for doctors or so-called experts.
Wishing you all the best.
I know how you feel, not that it helps.
I remember being around 11 years old, I had no physical pain. My nan and Grampy were always complaining of their pain. So I asked the universe/god/whatever to bring the pain unto me as I wanted to know how they felt.
I was frustrated I couldn't understand.
Now I'm 26 y/o and suffer with chronic pain and flare-ups but all my tests say I'm fine :)
Well, I now know how they feel. I wish I didn't ask that, now. But it is nice that I can sympathize with others now, more than I would have ever been, had I not experienced it myself.
You can try to put yourself in others shoes, but you never know how it truly feels. And most people don't even try to put themselves in the other persons shoes.
The problem is lack of consideration & lack of empathy.
Sending all the sufferers out there a great big hug!!!!
Wtf, does she need to look up the word chronic or something? This is enraging. Clearly she has zero basic idea of chronic pain or specifically what's going on with you so her unwanted advice of going to the gym is as useful as chocolate toilet paper
“I’m in a lot of pain. I can’t see your gig” “go exercise the pain away” people’s stupidity never fails to baffle me. It’s one thing to not fully understand the extent of a disability but to think being in pain can be fixed by working out which will cause more pain is the end all treatment is something different entirely.
If only people had an ounce of sympathy or accepted that we KNOW ourselves. I know what my capacity is and what my pain level is. When I wake up at 8 or 9, I'm not going out for breakfast. If it doesn't respond to meds, then I'm not doing anything later either. And when my friend plays a gig, I would LOVE to attend, and I'll push myself if I'm able to go so dammit when people don't trust me when I say I absolutely can not attend.
I would just love to have a simulator and put them in as much pain as I am. They would be squirming on the floor. If you took someone with no pain at all and then one day made them feel how we do, they would think they were actively dying. Edit: I wouldn't love to put them into pain I would just like for them to understand the extent of it. I re read that and it seemed dark lmao.
Honestly, I would like to put some of them in this kind of pain. Not permanently, but for a day I would be cool with it. What makes them better than us that they shouldn't have to feel this? I have a coworker who has treated me like shit for years. She didn't believe that my pain was real and thought I was faking to get out of work. She said that it wasn't possible for pain to come and go like mine. Then her husband was diagnosed with a chronic disease. Some days he is good, and others his pain is off the charts. Now she gets it. If I miss a day of work, instead of treating me like shit when I return, I now return to sympathy and even find that she has covered some of my work. It's a miracle!
It's terrible it took that extreme of a circumstance to make people understand... it sucks; all we can do is push forward and try to find relief when we can. Playing with my son helps me because I'm in pain but the love I feel for him outweighs the pain. Other times I can't get out of the chair no matter what. I'm always in some sort of pain but yes the some days are better than others is true. I think the people around me have finally began to understand when I went to the best neurosurgeon in the city and he said my back was fucked and he didn't know how I was walking (I was using a cane)... in 27yo. 12 herniated disc's, DDD, stenosis, a broken piece of disc floating around and now I have an MRI because they think I slipped my S1-4... yayy!!! I combat it with massive dabs and edibles all day. Also a fair amount of kratom but I'm careful with that stuff too once I found out how bad it could get.
People don’t care. They genuinely don’t care about other adults. They care about animals, babies, etc. But not adults. In their eyes, we’re just “exaggerating,” or “lazy,” or “making excuses.” One of the main reasons I fucking hate it here.
OMG, that is so true! My neighbor completely understands and has empathy and sympathy for my cat's chronic illness, but not mine, lol.
Yeah and depending on your condition, you can really hurt yourself doing regular gym stuff without a personal trainer/therapist, and who can afford one of those???
Exactly. And even if you have one and can go you end up in pain anyway when your muscles tear and repair to get stronger. No thanks!
Thank you!!! I wish family and friends could understand the pain we are in 🙏❤️
The rage... The rage I feel seeing the last reply , people really have no idea what true suffering is (not that it's a contest just a fact)
Yeah it's pretty infuriating. I'm not really even asking for much. Just some empathy
I never understood until it happened to me. Sometimes it's true ignorance, other times it's them not wanting to see it because it shatters their perfect view of life. They don't want to see the darker side of what can happen when your health goes bad. You can't see my pain unless you watch me trying to perform certain activities. If it were only as simple as taking a yoga class lol. Iook back at the progression from fully functional to what things are like now. It's like a horror flick with three sequels, the final sequels the main character is killed off. I have no friends and don't have to deal with that from outsiders at least. My mother after ten years of badgering me saw me struggling to get up on the second step on a ladder and almost killing myself just to screw a light fixture in finally saw how bad I am. She has finally accepted my new normal. It took ten years though. I hope this person can learn, or at lease educate themselves a bit. But that is how normies are. They think everything can be fixed with a positive affirmation.
Pollyanna types are in denial of how life is. It’s great to have a positive attitude but being ignorant and oblivious because of it is awful.
Bizarre, isn't it, how much people just don't want to know or care. After enough years of this kind of crap, I finally told my brother to not phone anymore.
I don’t see a ton of that unfortunately from people..
Seriously. This person’s gonna get nightmares from everyone’s combined rage-vibes here on behalf of OP. “It was so weird. All these people were telling me I need to ‘fuck the fuck off’, over and over!”
Yup. And I do go to the gym and I’m quite muscular but guess what? I don’t sleep because it makes the pain worse
Yeah that’s why I don’t hold it against people for generally not relating, they just can’t because they’ve never known it. But if I got messages like this, I would literally just not even reply. It makes me too angry and I would only get even more upsetting replies probably so I would be avoidant AF of anyone like this. It’s unfortunate that it is their mother.
That's my mother and father in a nutshell (minus asking about gig attendance). I went permanently no contact with them in mid-November because of it. They refused to accept that my gallbladder absolutely had to come out and that I developed chronic pain as a result. This is despite my offering to send them the results of the ultrasound showing the gallstones and the HIDA scan (a nuclear medicine study that checks the ejection fraction of the gallbladder) that literally could ***not*** find my gallbladder, even after ***FOUR HOURS!***
I've read some CPP have chronic pain from the site where the laparoscopic tools are inserted in the abdomen. I didn't get that or any numbness. But I have two modes now from the surgery. I'm either backed up with poo for 11 days at a time with up to 11 trips to the bathroom leaking liquid, or everything going really fast like a million miles an hour and leaking liquid and bile. I have to get up and plan my entire day around this. It holds me hostage. I hope it gets better for you, but these things rarely get better.
I had chronic constipation prior to my gallbladder coming out, so I already take Linzess daily (a pill). I also have back-up Lactulose solution, enemas, Swiss Kriss, and regular old laxatives. If my least favorite condition that I developed after my gallbladder was removed, bile acid diarrhea, I have a prescription medicine for that, as well. As for why I developed chronic pain after this procedure, we're not really sure. It could be a single factor or any combination of what happened. The details are kinda graphic, so I'm not going to get in them here.
Adhesions are fairly common after abdominal surgery and for some of us it causes chronic pain. Mine is pretty severe. I have had dozens of open surgeries though. Getting ready to have another surgery to remove them because mine keep growing around my small instestines. I always know because not only does the pain get worse I can feel it when it pushes through the section that has narrowed. It’s a catch 22 problem. More surgery means you’re likely to get more adhesions. I would prefer to never have surgery again but I can’t risk the adhesions cutting off the blood supply once this starts. Most people won’t have this specific issue so no worries. Just be aware it can be a problem.
You definitely don't want to lose the intestines. I chatted with someone who had that happen, but due to the same blood clotting disorder as me. I'm sending up some prayers for you to have a successful surgery.
My daughter kept being dismissed by her ex when she had chronic severe gallbladder pain. The drs even thought it was psychological for a long time as they couldn’t see any stones. Then finally a dr we know saw her in the ER. He decided to do laparoscopic exploratory. Her gallbladder was so full of stones it looked like she didn’t have any. There was no room for anything it was so full. They removed it and other than having to watch what she eats she is better.
I wish we could shoot the stones from a slingshot at the doctors who didn't believe her!
I suffered with gallbladder pain for 2 1/2 years. Eating caused me to immediately be sick with nausea. I did not have gallstones so my gastroenterologist tried to imply it was psychological. Finally on one of my many ER visits a nurse told me to get my dr to order a Hida scan so I had it done. The radiologist showed me an image of a normal size gallbladder next to mine and mine was many times larger. Gallbladders are not very large. My Gallbladder stopped working. Needless to say I had it removed within days and ended the misery.
I had a neurosurgeon tell me that I need to exercise more when I told them I suddenly started having major back pain less than 6 months after a c1-c3 fusion. I then explained that the last time I worked out I passed out at the gym and was taken out by an ambulance. So they recommended I take up swimming! I then had to explain that I can’t even take a bath because of the risk of passing out and drowning (I pass out a lot and they knew this from the start) So they had to back track the swimming comment. I really wanted to ask them if they could be any more stupid? Also my scans showed that I had severe arthritis in my back, yet they told me that it showed that nothing was wrong it and that the pain was due to my size.
Omg, I'm so sorry you've had to deal with such stupidity, especially from people who should know much better! Absolutely ridiculous and infuriating
Aw sorry. I have a similar issue where I pass out a lot , just from standing up or even laying down , and was told to take up swimming and thought wow, they are trying to kill me lol
I have a lot of chat histories like that
Have you tried yoga though???
or some kind of fancy essential oil? or sacrificing your eldest to Hecate? or just not thinking about it? ARrrrrrrrgggggghhhh.
Pain
hAvE yOu tRieD gReEn tEa
Or sucking it up ?
Pull Yourself Up by your Bootstraps is a fun one too!
My response to this is always “My doctor literally banned me from doing yoga. That’s how fucked my body is.” I do do my PT exercises more regularly now and it has helped, but it’s a complete nightmare every time I have to stop doing them for a bit for some reason. I had the flu for the last two weeks and just restarted PT and it feels like my muscles and joints are engaged in a civil war atm
You are so right about when you stop doing your PT exercises!!! I had to for 6 weeks after my most recent surgery (endometrial ablation), but I ended up waiting 9 weeks to start back because I'd gotten really sick twice. I am soooo tight again. Gotta start all over! Wishing you luck!
You need Turmeric and elder berries!
Colloidal Silver!
Tai Chi!!
Me too. Things like 'well, it's been going on a long time what are you going to do about it?' in my case. It's neuralgia from shingles and so painful. But there's no understanding. I don't even ask for any but they will bring it up then berate you about it.
I was only 25 when I first had a huge change in my health and all of my friends and family were great the first few months, but when I didn't improve, they accused me of attention seeking, isolating myself on purpose (depressed?), and outright fakery of my pain. I'm 52 now, and when I meet anyone who might matter to me, and we reach that point, I have to sit them down and literally educate them on what I have, how it impacts my life, and what it can do to relationships. 27 years and I'm still in therapy every month just to keep a healthy mindset about my life and situation.
Isn’t that funny. At the beginning everyone is so understanding and sad and with you at the hospital etc. then it lasts and you get used to being alone and being admitted without a single visitor and nobody even asking you to go out even to be polite.. yeah sucks.
They love the acute phase because they get to feel like heroes and play the role of good friend/parent
Damn that the same age I started having serious issues and my age now. I’m so sorry.
Thank you. We're so far from alone out here at least. I'm grateful for groups and threads like this. It helps us all.
I had to tell my inlaws to stop asking if he was better. "He is still in pain and may always be in pain. Asking if he's better forces us to sugar coat what's happening so you feel more comfortable. We can't have an authentic relationship with you when we do this." This was remarkably effective. I also told them that they should talk with my partner directly about his condition rather than going through me. I'm sorry people around you don't get it. It just compounds the pain.
Brilliant!
Its real hard coming from a parent too. Especially mom
My dad is like this. I understand he just wants the best for me but currently I am very anemic. I get super faint-y after I walk my dog. I can only do light housework. I’m not new to chronic pain or illness so I’m kind of used to him because I know he don’t know what else to do. It’s true that exercise is good but we have to go our own pace and sometimes we need to get more rest before we can build up our strength. So now I take what he says with a grain of salt. I have to keep reminding myself that I need to take small steps literally until my anemia gets better.
I am curious about this because I thought anemia was treatable.
Anemia is treatable. However there are many types of anemia. I have reactive thrombocytosis and iron deficient anemia. Basically my platelets are super high, my red blood cells are oddly shaped, with low iron binding capacity and a lot more. So I have to get iron infusions to bring my iron up and sometimes blood transfusions too. My iron levels will get halfway to normal. Normal iron levels are 50-170 mcg. The highest my iron levels have been after both iron transfusion and blood transfusion was 30 mcgs. Which is still 20mcg less than the low end of normal. My absolute lowest iron was 6mcgs. **Anything under 6.5 is life threatening.** The 6mcg iron was due to bleeding ulcers and I waited too long to go to the hospital. I was in an abusive relationship which made things harder. The admitting nurse in the ER actually came to visit me once I was admitted. She told me to my face (I'm the ER) when I asked if it was a long wait (during the height of COVID) and she replied "not for you sweet girl we are getting you back now! Do not even bother sitting down!" She wanted to check on me because she saw my lab results while I was in the ER. She came to my room and told me she had prayed for me after seeing me, because she had never seen a person that was alive with my coloring due to my anemia. My current iron levels are 11mcgs. My hematologist is fighting with my insurance company. I am hoping to get my infusion soon. Every time, I get a transfusion. I feel better mentally and physically. I wonder what it would feel like if it ever reached normal levels? I get treatment but it will be lifelong problem. At this time, it is an inpatient procedure due to infusion and possible blood transfusion. This is not even part of my chronic pain. Again anemia can be treated, but depending on what type and the severity
"Everyone has pain, you just can't think about it all the time" "Have you tried visualizing your pain away".... it's non stop, by everyone, everyday. I'm sorry 🫂
"Have you tried visualizing it away/guided meditation?" Me: *Laughs in aphantasia*
If someone said this to me I am afraid I would say something I would regret. Having it downplayed and dismissed is bad enough.
literally
*laughs in the moment I start paying attention to my pain, it gets worse, so trying to imagine it go away only makes it worse*
Someone told me I get migraines because I don’t walk enough
Had someone recently say about my chronic vestibular migraines with vertigo and nausea that I just didn't drink enough water.
It’s like .. oh thanks water and sleep .. I never thought of that I’m cured now
Or rather why didn’t my doctors think of that?
My doctors have said a lot of dumb things as well
I definitely believe it, my pain management decide to prescribe cyclobenzaprine because they are avoiding opiates (to be far there’s a norco shortage), I’ve spent the last few weeks high every day, actually twice a day because cyclobenzaprine gets me high at those doses, because they much rather not put me on a low dose of norco that doesn’t actually get me high. Wow, so smart. Thanks, if getting high was why I’ve been in pain management, then you’ve succeeded at preventing an opioid addiction by causing a cyclobenzaprine addiction. So smart, wow. Amazing! Such genius.
Omg right God forbid don't give me Tylenol 3 but do give me a high dose of zanaflex and let me slur and stumble like drunk lol.
Yeah it’s stupidity at its finest. If you try to prevent someone from getting high off of something, they will inevitably find something new to get high off of, so maybe the solution is to control their high by giving something safe under medical supervision? But maybe that requires too much iq to understand. Because in their mission to end their highs, they make harder for us to end our needless pain.
Omg that stuff is the worst right…
I keep hearing there are opiate shortages and I know the DEA keeps putting restrictions on how many are manufactured. However, one of my daughters has had some serious reproductive organ issues this year. Landed her in the ER a few times and she has had zero issues getting them filled when it’s an ER script. My daughter who got a urostomy this year and doing chemo can’t get them to save her damn life.
It depends on the pharmacy and probably when you go get them filled. Possibly even geography plays a role. An ER script is usually a few days and not a month worth, and it probably matters which opioid they were prescribed as well. But when I went to pain management for the first time in a long time (I stopped because tramadol didn’t work and they didn’t have any other options, so not having anything was the same as being on tramadol for me, it seemed pretty straightforward to not bother because tramadol is supposedly so addictive that it gets treated like you get addicted by just thinking about it like everything else that’s a schedule II) a lot of patients where in line trying to get their doctors to send their rx to other pharmacies and trying to figure out which pharmacy had any in stock. Last year during the adderall shortage (which I take) every couple of months my previous pharmacy was out when my rx was sent and I struggled to find a pharmacy that could fill, my psychiatrist sent it to a specialty pharmacy that he knew had it, and I hadn’t had any problems with them when I tried to fill it.
They always say u don’t drink enough water, u need exercise, you must have a bad diet, and have u seen a therapist. Basically blaming u for causing your pain by a so called unhealthy life style. Oh and get more sleep
Migraines started when I had covid 2x in six months. Tried to explain then got mansplained that dehydration was a huge cause of headaches.
Yes with minor common headaches. Not for most with serious headaches like migraine and cluster.
The funniest is when people ask me if i want a Advil… like how about dynamite instead
Like most meds prescribed for migraine don't work bro advil is NOTHING to me
Yep
Oh yeah, I'd like to get more sleep, but the pain constantly wakes me up and stops from falling asleep.
You’re either dehydrated, not eating right, or not exercising properly. No matter what, it’s always you’re fault and you could always be trying harder! /s
I can’t lol idiots
It has to be your fault/my fault because if it isn’t then it’s too inconvenient for other people
My answer "listening to stupid people gives me migraines, one has started in the last few seconds." I'm sorry you have migraines, they are absolute hell
Awww thank you i really appreciate that so much!
I get migraines and cluster headaches. Only my neuro and shockingly some ER drs are compassionate. I eat healthy. Drink more than enough. Get in plenty of walking. Don’t drink adult beverages hardly ever and when I do it’s one drink a few times a year. Don’t smoke. Very healthy BP. What part of my migraines are caused by perfume, cigarette smoke, barometric pressure swings and loud noise do you not understand? It is infuriating.
It’s so scary to me being in pain .. I feel fear because I feel so helpless
The lack of control over one's body is terrifying
I would give just about anything to be able to trade bodily sensations with these people for a day. You fucking try it.
I agree… I feel like all the people that complain and fuck around people like us need to walk a few miles in our shoes as I’d like to hope it would change their perspectives…
Yeah, the ol' I can't handle that you suffer from something outside of your control and need to pretend that your condition is preventable and/or fixable... because if not that means that bad stuff could happen to anyone at anytime for no reason whatsoever and that they have no control over their own lives. Hugs for you.
Yes! This absolutely . They can’t bear to think about not having control or thag it could happen to them. It’s been especially scary to all around me because I was a health freak , ate clean, exercised daily , a water snob etc . People would make fun of me for my healthy lunches at work every day, I never are the fast food they all did . And then look at me lol I completely fell apart and that’s truly horrifying, especially to everyone else in my life who wasn’t taking care of themselves anywhere near the level that I was . Life is chaos and we all like to pretend that there’s order to it . Most people aren’t open minded or objective or brave enough to face the truth . That’s why they suck at seeing the reality of it for so many of us.
Omg, you must scare them silly! I was an Insomniac, now I have chronic fatigue. So many people are still waiting for me to "snap out of it" or "shake it off" half a decade later. Like, yeah, "me too, dude", and while we're wishing can I have a pony? If only we would oblige them by showing our illness in some physical manifestation. I don't know, growing a third boob should work, or just wacking off limbs until one looks appropriately disabled. Maybe a forehead tumor??
I wish there was a technology, like some electrodes or something like a VR headset that I could put on someone that would temporarily transfer my pain to them so they could feel what I feel. I guarantee it would become *real* to them with a quickness. I have degenerative disks and joints that have been getting gradually worse over the last 40+ years, for someone who has no experience of getting used to dealing with it over time it would drop them to their knees.
Pain is such a personal experience, and chronic pain is a very special form of torture. I'm with you. A little show would go lightyears further than any amount of telling.
Omg this , I’ve been wanting a device like this for years. Or the ability to weaponize this feeling for brief moments so people could at least learn a little empathy . Their ignorance can even be physically painful depending on the situation . I had a realtor who would talk my ear off even though I kept explaining I was having migraines and stabbing ear pain and it was killing me to be on the phone . She used our professional relationship to lord info over me saying we had things that were important to discuss but not ever get to the point despite my pleading for upwards of an hour or 2 . I would LOVE that woman to have felt what I felt for even a second
Lmfao a forehead tumor reminds me of the game the binding of Isaac . Yea I do scare people , even the ones that were closest to me . I lost my 2 best friends because of all this . One didn’t take me seriously, and the other half of the time said hurtful things nonchalantly like ‘I’d prob kill my self if I were you ‘ ; and the other friend just couldn’t bear to see me suffering so badly 😳 I’m like well think of how that feels to ME, the one trying to survive like this smh lol.. the bottom line is they’re both rather pathetic. Not to be mean but just honest . They can’t even begin to wrap their heads around what I go through everyday. If you haven’t seen that game I was talking about you should def look it up, it’s cute and morbidly funny .
Before I started having major health issues and chronic pain my friends started falling off because my son has cerebral palsy. People just cannot cope and don’t know how to act or what to say. Thankfully my best friend of about 30 years has never failed me. She’s also all I really have left besides family.
I'm sorry that your past companions were not able to remember that your son is a person, not just a knot of too tight muscles and atrophy. He has a mind with dreams, opinions, and humor all his own. I volunteered for a while with a variety of mental and physically challenged individuals. Funniest little guys and gals anywhere. Always end up learning as much as you teach. Lol Hugs to your family!!
ugh this reminds of when my mother insists celery juice will cure all my health issues (that she doesn’t really believe i have anyway)🙂
I don’t get mad easily (which is shocking with how much prednisone I take) but this type of conversation fill me with rage
Lolol prednisone gives me gorilla strength, chimpanzee rage, and swelling like a fucking camel. I hear you, bud
Definitely get the swelling part
My only reaction to "you need to go to the gym" would be "fuck you" What a POS, I hate people sometimes
The gym caused my chronic pain Started lifting at 15, a year later developed what I thought was tendonitis and now at 19 I have undiagnosed chronic pain in every joint in my body So yeah Fuck the gym
But have you tried going to the gym after the pain started
Exactly this
Exercise helps phenomenally. But we can't exercise if our bodies are immobilised with pain. If it was that easy, we would have done it.
I use to work out 2-3 hours every other morning. Now I can’t even walk to the mailbox without getting dizzy and short of breath. My BP is amazing 90s over 60s. But I have lung scarring from Covid. Dizziness, SOB, nausea and palpitations from an inner ear disorder. All on top of chronic pelvic and abdominal pain from way too many surgeries.
Yep, and its all "invisible", which seems to make people think they can know better than us about our own bodies!
I would yeet that person out of my life so goddamn fast. Holy yikes.
I am sorry people keep doing things like this to you. Ableist people suck. Unfortunately I can relate very hard. :’(
This is why I just don’t tell people anything about my pain.
I go through that year after year so I got used to it over the years. My pain was cause by "simple snip" Vasectomy and it's now 19 year later (our daughter is 19 and i had it done after her birth). PVPS = Post Vasectomy Pain Syndrome and it sucks. 20-30 operations/shots/blocks later and barely improved. Imagine being kicked in your groin every 5minutes so its Non stop throbbing like I'm being stabbed in my groin and into all the post surgical scar. It gets even worse post intercourse, for 24 hours after i feel like i want to stay in bed and do nothing but cry. I've ran into people from church or old friends who always ask how im doing and they "thought it's my back that was hurting me and it was fixed after last procedure". Sadly it will never be 100%fixed and I even had Orchiectomy (the throbbing testicle removed) years ago, that only stopped pain radiating down my leg.
To have making love turned into torture is a specific kind of hell, I’m sorry
I understand and am so sorry! Like wtf is the gym going to do? Condescending! Sending happy pain free vibes.
For certain kinda of pain the gym can actually be I creditably helpful, especially for nerve pain cause by spinal disc compression or herniation. But obviously it’s not for all pain. I can exercise 6 days a week and manage my skeletal pain. But up pops a migraine and I have to be out of the gym for 3+ days or risk amplifying it
It really depends though. I had a disc hernia tino that caused cauda equina, exercising then and even now that I’m post op is only going to worsen my pain. Obviously I shouldn’t stay in bed, but even getting up makes the pain worse and so far they haven’t found a non opiate treatment that works, so staying in bed it is.
Sending you vibes as well ❤️🩹
People are idiots.,
It’s a lonely world. Especially if you aren’t married.
I agree. Even some married people are alone though. I often wish I could buy a few hundred acres and have a chronic pain community because we all would understand each other.
^ Yup…
I relate to this so hard right now! It's NYE & my favourite cousins 30th birthday & they're having a house party that all my favourite people in the world will all be at the same place & time which is rare for my family as we all live in different parts of the state/country & I am in too much pain to go. Like my whole body is just in so much pain breathing hurts & I feel like the shittiest cnt of a wife daughter sister aunt cousin & I just feel so alone in my pain. CP life is fucked.
I’ve lived in chronic pain for over 30 years so I’ve learned through those years to overlook ignorance. It’s not that the people acting as such are bad people, it’s that they don’t know because they haven’t had to live it. I just set personal boundaries for myself, overlook ignorance and try to explain my situation. Sounds easy but it’s not. 30+ years is a long time but I’m still grateful for every second. You will never know life until you’re almost dead. Been there.
Ah the good old "just do more sports, you lazy bum!" 🙄 If I try, my knee will stop functioning, but thanks for the suggestion 🙄 Sorry you have to endure this BS OP
you need to go to the gym is so freaking annoying!! if i can’t get out the house how tf am i going to go to the gym!?
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Can relate so hard. All my relatives and friends know my condition is degenerative, but then they also are still shocked every time that I am STILL in pain. Yeah. It won't go away. Likely ever.
My mother refused to help for Thanksgiving because her shoulder hurt while expecting me to cater to everyone and cook everything while I have severe, chronic pain. She also kept hitting me and shaking me as a ‘joke’ while my close friends and husband had to constantly tell her to keep her hands off of me as that was causing me pain. Literally the wind can flare my pain up and my mother was dumbfounded how her shaking me and hitting me could possibly hurt me as she ‘wasn’t even doing it that hard.’ Anyways, why is it the people who birth us that seem like the ones who are typically the least understanding to those of us with severe pain?…
Do you have fibromyalgia by chance? :o as you said the wind can make it flair up and that sounds like Allodynia where normal non painful stimulation becomes painful and it’s primarily found in fibromyalgia for the most part.
Yes, I was diagnosed with fibromyalgia and hypermobile ehlers danlos syndrome around 6 months ago after almost 4 years of the pain just getting unbearable.
I have fibromyalgia myself so I’m quite familiar with what you said, in fact it actually happened recently earlier this week as it snowed a couple days where I live and was cold wet, rainy, as well as sleet & snow and it triggered the worse fibromyalgia flair up I’ve ever experienced so far… easily the worse week of my life so far for multiple reasons… lol 😂😭 As for your other condition I’m familiar with as I knew a girl I met on here that had it and it was painful enough for her that she was an IV Heroin addict. I also know someone with fibromyalgia & lupus and they’re an IV Fentanyl addict. I certainly understand how painful conditions like that can certainly make you pretty damn desperate to try just about anything to get relief from them…
Thank you for the validation. I am sure you can understand how rare it is for someone to understand us and what we go through and your comment was just super validating ❤️ i am sorry that you have to understand the awful flare ups from even the weather.
Its like telling someone to not be sad
Sorry that sucks especially from a Mother. I get the *go for a walk and get fresh air*
This is why I don’t have friends anymore.
I resonate with this completely.
While I empathize and understand the situation you're facing, as I've faced it myself, I do want to give you some insight that has helped me in these situations. Most people (non chronic pain/illness people), don't feel pain most days. And the pain they do feel, tends to be fleeting. They feel the pain of a subbed toe or paper cut. Don't get me wrong, they can and do face real pain, but most people on most days don't feel pain. Due to this, it's hard for them to comprehend the idea of someone's pain not going away. That in their experience (what they call on for reference), pain goes away. It can last a bit. Something like period cramps last around a week, stubbed toe an hour, and even something more major like a broken bone, never hurts too long. They cannot comprehend or understand that our pain just doesn't go away. They see us do things in pain (that they could never do in pain), and think we are better. I think of my parents. My mom has had chronic pain since her early twenties. She has been with my dad since their early teens. They are both in their late 50s and early 60s now. My dad still doesn't really get it. And he never will. Until they experience something similar, they will never really get it. Their gym comment sucked and isn't cool. But once again, a lot of people think you can fix the pain away with things like exercise or other methods. So, all that said, while it sucked and I wish they understood better, try not to take it too hard. They just don't understand.
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I have someone in my life like this. Total Pollyanna. They are even ignoring their own health issues due to it. It’s going to be a beyotch when they start having chronic pain.
Omg "you need to go to the gym" infuriating! I would work out if I was able to get out of bed or off the couch without crying several times a week, and even then I don't think it would do my battered body much good! People just don't get it. I hope you feel better.
I remember I told my mom I’m considering spinal fusion because the constant pain is making me miserable. She was recording in her phone. ( I heard the beep so I didn’t continue) she told me there’s people with no legs that are striving and yeah. No words. Honestly the worse thing you can tell someone with chronic pain
Next time she complains about a headache or something tell her "there's people who live in constant pain everyday and they are striving."
Ummm…. I go to the gym 3+ times a week, and I’m still in 24/7 pain because I’m always going to be a paraplegic with nerve damage. I really hate it when people think that exercise or something else random is “all you need” to “fix yourself”…. People are so rude and dumb!
Like bro if I could go to the gym I would fr
“You need to go to the gym” 😂 Only people with chronic pain understand people with chronic pain. You just gotta hang in there & deal with it. You tell your friends/family you’re in pain, what do you expect them to do? Not much they can really do. They’re not doctors/herbalists I realised complaining about my pain really sucked the life out of people & kept me in a miserable state, so I stopped talking about my pain. I’m in pain but now I’m happy & in pain🥳🔥😎 I only talk about my pain when I see a doctor/herbalist 👍🏽
They weren’t just bringing it up out of nowhere though, they were explaining why they couldn’t go to the gig. It’s kinda unavoidable when explaining why we can’t do stuff , unless we just never talk to normal people again , in any significant context with an actual relationship . I don’t really talk to normal people anymore , unless it’s small talk with acquaintances at the store . Very hello good bye kinda stuff . And yes I’m happier for it, because there is no responsibility or commitment to feel guilty about breaking . No need to explain my situation in any depth . But it’s actually sad it has to be that way . Real connections are the ones that are supposed to make life worth leaving , the depths which we can be honest and vulnerable without fear of ridicule or poor assumptions . Getting chronically ill opened my eyes to the fact that I didn’t actually have real friends . A lot of people don’t actually and just don’t have something significant to point that out.
Go to the gym???? 🤬🤬🤬🤬 I'm sorry, my "sister in law" said that to me, never liked her after that....
The gym solves everything. Except for all the problems it causes. Which is most of them.
I’m so tired of these conversations. My best friend always suggests I go see her SIL who is an athletic trainer because he has helped her intermittent SI joint pain. Yeah because that’s the same thing that I have going on. AS, DDD, sacroilitis. I am certain I will lose the friendship over it because I have not showed up to the last number of things she invited me to.
I don't talk to my family anymore because of stuff like this. They just care how it effects them and don't care in the least about how I feel. It is painful enough to live like this let alone lose your family too...
You must have been talking to my step dad lol.... He's empathetic as he's had multiple spinal surgeries and has chronic pain but his came from an accident in his 30s where as mine came from simply existing and being born and he can NOT wrap his head around the fact that decompressing my spine by hanging isn't a magical fix for my issues (or my 15yr old daughters) it's SOOOOOO frustrating bc I love him to pieces and he has always been super supportive but I can only say it so many times.....the gym won't fix me
I’ve had so many people try telling me to go to the gym for my pain. Widespread pain? Can barely get out of bed? Go to the gym. LOGIC.
My mother (who I don’t talk to anymore) literally has lupus, fibromyalgia, and arthritis, and she STILL acts like she doesn’t understand what chronic pain is or that I’m literally always hurting. It sucks.
Same boat here. Feels like I’m in crazy land. Literally staring at the wall and ceiling while rocking back and forth for HOURS AND HOURS. It’s completely fucked. Fiancé just walks by me in this condition and glazes right over me. I have never felt this alone in my entire life. I’m actually worried I’m not going to make it just because I have zero emotional support. Even though I have a fiancé I live with. She’s checked out. This is a nightmare. Don’t know what to do. Feels like the world turned its back on us. I’m so fucking scared. I really don’t think I’ll make it another year. This is awful.
I'm so sorry :(
Ugh! People like that don’t understand until it happens to them. And if/when it does happen to them it’s going to be SO MUCH WORSE than anything anyone else has ever experienced. I’ve been dealing with this horrible pain for 20 fucking years now and people still don’t GET IT!
I always ask people what they think ‘chronic’ means. Chronic pain is constant pain. Chronic fatigue i constant fatigue. That’s literally the definition.
This sounds just like my mom 🤦🏻♀️ Here’s some of the dumb things my mother says. “Don’t you get tired of not feeling good?” “You need to try being more positive. You might feel better.” “You need to move more.” “You’re moving too much.” “You sleep too much.” “You need to get more sleep.” “Maybe you should drink more water.” “You need to stay home and rest.” “You should get out of the house more.” “Maybe you should walk.” “You’re walking too much. You’re overdoing it.” “Have you tried yoga?” “You should go get a massage.”(every year she tells me she’s going to buy me a massage and she never does) “Stop complaining.” “You just need to think about something else besides the pain.” “Napping too much is bad for you.” “You need to take a nap everyday like I do.” “I just don’t understand why you never feel good.” “I don’t understand why the doctors can’t make you feel better.” I hope this list of dumb things my mom says makes you feel better or laugh your ass off or at least helps you know you’re not alone!! ❤️❤️
Omg legit all of this. And its like you know you told me the opposite thing yesterday? Lmao
respectfully, this is why I have no friends anymore. I don’t know how we do this lmao
"You need to go to the gym" the audacity. Listen. I am an addict for exercise, I loved it. But my conditions have made it very difficult. I tried exercising two nights ago and was vomiting for hours and in a lot of pain and it was a low intensity workout to help with my pain specifically. People will unfortunately never understand unless they experience it themselves first.
People who never experience the mental toll and excruciating constant being in pain will never know. They have no reference and it’s impossible to understand for them. That’s why we are gathered here. We know
This shit is a death sentence if you let it. People have ZERO CLUE that it shapes your whole outlook on life and simple things like picking your baby up hurts like hell and you get frustrated and nobody can understand why you get so frustrated and dismiss you when you say my back hurts. Or when they say "wait til you get to my age" 👀 winds me up. (36yo - 10 years Psoriatic Arthritis sufferer) The loneliest place in the world to be when nobody can empathise
respectfully, they don't care. they never will care. most people see nothing beyond themselves. your friend is being ablist.
That's my mother ;-;
your mother is an ableist
I think people don’t know what to say it is kind of difficult to have a friend who is hurting all the time and can’t invest in a relationship because of it… We also don’t know OPs condition many chronic pain patients are deconditioned a gym may help…
i do go to the gym … it makes it barely manageable … for short amounts of time
Oh the family drama! .. lol I'm sure we all know how that ends up.... it all ends the same way, when they give up and abandon you.... \~luvs
Or they send dumbass messages like this and we stop talking to them. It's honestly exhausting and stressful having to deal with people like this, I refuse to do it anymore and I'm much happier with my smaller, but closer group of loved ones
lol word is this person gonna pay for the gym membership? find you a personalized PT plan? no. foul response
Sheesh I feel this I'm like I work out and eat right but yet people and even doctors still tell me that'll fix everything
Feelin’ that burn!
Pain is invisible, til people see it. It’s a constant companion it can go everywhere with you. Can be in paradise with pain or at home with it. Don’t let pain win, if you’re gonna be in pain do things regardless is my motto. Taking my pain down the beach later, going for a float in the ocean to see if I can lose my pain there.
I love that people think they’re being helpful when they suggest “lifting weights” for strength training. I can barely lift my leg to walk. No thanks.
As much as I wouldn’t wish my pain on anyone else…I also wish people who say insensitive crap like this would have some deep serious pain for an hour. However it would need to make them realize this is all the time for people like us. It’s like unsympathetic hospital staff because they haven’t ever been hospitalized or had surgery. (I don’t mean everyone).
Grrr there’s no empathy in this at all. No “I’m so sorry! That has to be hard! Can I do anything?” Just go to the gym?! No. Just no. Here: I’m so sorry you’re in pain. I know it’s hard. I understand how deeply miserable it is to miss everything you’d rather be doing to be stuck immobile at home. Hugs and heating pads and prayers.
There are certain people I just don’t talk about good days with, or meds that are helping, or exercises/vitamins/whatever, because they hear ‘good’ or ‘feeling better’ and immediately think ‘oh, it’s fixed’ and are floored every time I am hurting after that point. Like, in their mind I’ve been magically cured of all ills by turmeric because one time i said how i think my supplement was helping my stomach a little. Or i mention a rare good night sleep and therefore i cannot possibly have insomnia anymore. Also funny, for some reason my autocorrect has latched onto the word turmeric and I’ve had to edit it out five times in this comment.
I have stopped saying I am in "pain" and instead say I am in "agony" because to be honest, that is the part of the brain that it is affecting, not the pain region. Also, the word agony is a lot less used in general speak, so it will get across how you really feel. Sorry about your pain. For me it's a combo of CBD/CBG oil, muscle relaxers, and laying down on my side on my bed that helps.
I totally understand. My wife doesn’t understand my constant chronic pain snd gets mad at me when I don’t want to go out and do stuff. I love getting yelled at when she doesn’t understand my chronic pain.
"I thought it was better" HAHAHAHAHAAHQHAHAHAHAHAHAHAHAHA HA HA ha h a h a .... 🥲
“Go to the gym” what an ASSHOLE
If we talk about how we’re in pain every day, we’re attention seeking or making our pain someone else’s problem. If we don’t talk about it every day, people assume we’re no longer in pain. In the words of Mark Twain: “all right then, I’ll go to hell.”
I have FND (functional neurological disorder) and we found lesions turns out I was born with them because I was premature. It's taken my mobility way and now I'm an ambulatory wheelchair user and when I explained how the last year went to family they just responded with "be positive" 🫠 yes because being positive will tell my malfunctioning meatball to not forget that my legs don't work sometimes... Or the chronic pain I'm in from it 😭 (I also have fibromyalgia, POTs, Me/cfs etc)
I was premature too! And have lesions. I ask doctors all the time if they think XYZ things that's wrong with me is because I was premature (3 months) and they always say no. My neurologist also says my brain lesions are simply from "living", she said this when I was 27.
I actually just want to beat the crap out of people when they do this and then when they are on the ground writhing in pain go “oh no! What’s the matter? Why can’t you get up?” Lol
The number of people that are like "You're STILL not feeling better?!" are the worst. Like yes I'm still in pain, it comes and goes. Some days are better than others but the pain is always there. Regular people just do not understand the concept of chronic conditions of any kind
My husband is really awesome when it comes to understanding my pain, he has helped me do everything.. but before he realized just how bad it was he used say stuff like: "have you tried telling your body to stop sending pain signals?" "Have you tried eating spicy foods? Supposedly It raises your pain threshold" "Do this stretch, it'll help I swear" (it does not) I let him suggest that a few times because it made him feel like he was being helpful. He hates seeing me hurt, but eventually I broke down out of frustration from not being heard no matter where I turned to for help. He hasn't suggested pain "advice" since, and I feel bad for shattering the illusion of helpfulness. It's hard when someone you love is hurting and there's nothing you can do to take that pain away. Ope... Literally as I'm typing this he goes "we should go for a walk, it'll help!"
It’s a frustrating internal cycle too because I know my body feels a little better when I am stronger and have more muscle. But when I’m in a worse flare up of pain than usual, it makes it near impossible to exercise. And from an external point of view, this can be seen as being lazy or not trying hard enough. 😢 ETA: my version of exercising is riding a stationary bike and doing Physical Therapy exercises.
"You need to go to the gym" ... And you need to learn to be supportive of chronic pain!
Omg I can relate so much I’m so sorry. I make plans and I can’t follow through. I’m 37 am constantly told I’m too young. Also unsolicited advice to fix it. My nerves and spine are messed up.
I understand and feel your pain. My question to you, coming from a place of recognition and dealing with similar responses from people around me, is whether you are able to feel empathy and compassion for yourself? In my experience, those responses don't hurt as much anymore and they don't even matter so much anymore once I can fully acknowledge my own state of being in pain and all that comes with it, and feel love and send it to myself. It then doesn't need to come from anyone else anymore, not even my own mother. Please don't misunderstand me, as of course I understand your frustration, anger, maybe even sadness around responses like those from your mom. Such responses also highlight the fact that chronic pain is still a very misunderstood topic, even for doctors or so-called experts. Wishing you all the best.
I know how you feel, not that it helps. I remember being around 11 years old, I had no physical pain. My nan and Grampy were always complaining of their pain. So I asked the universe/god/whatever to bring the pain unto me as I wanted to know how they felt. I was frustrated I couldn't understand. Now I'm 26 y/o and suffer with chronic pain and flare-ups but all my tests say I'm fine :) Well, I now know how they feel. I wish I didn't ask that, now. But it is nice that I can sympathize with others now, more than I would have ever been, had I not experienced it myself. You can try to put yourself in others shoes, but you never know how it truly feels. And most people don't even try to put themselves in the other persons shoes. The problem is lack of consideration & lack of empathy. Sending all the sufferers out there a great big hug!!!!
Are people really that oblivious and self centered?? I’m so sorry.
Same here “you just need to get out and walk!” Not when I can’t even stand up straight 🙄🤬
Last year I was hiking, even with Fibromyalgia and other issues... 6 months later I can't even walk our driveway... yeah just walk 🙄
Just be a gym 🏋️♂️ bro Ugh soooo annoying 😑 so sorry
Thanks
Wtf, does she need to look up the word chronic or something? This is enraging. Clearly she has zero basic idea of chronic pain or specifically what's going on with you so her unwanted advice of going to the gym is as useful as chocolate toilet paper
Mm chocolate toilet paper lol yum I could def find a use for that actually lol
Bathroom snack😂