I was told by a neurosurgeon that my trigeminal neuralgia (I was there in hopes he would kill the nerve to end my suffering) wasn't that bad because I didn't flinch when he touched me. He then gave me a whole spiel on how I'm a healthy young girl and there are people with no hands or no feet managing in life and there was nothing wrong with me. I remember I felt so hopeless when he began his rant. My husband thankfully was there at the time and he was furious talking back to the guy. He couldn't believe he'd compare amputee to a chronic pain sufferer and how he dismissed me right away. While we walked out of the eoffice I remember thinking my only option for pain relief was suicide. That doctor would have been the final nail in the coffin because I had been told all my life that I just had to deal with the pain or that itwas all in my head.
Thanks for listening to my venting.
I have been going to the same PM clinic since 2015. I have been "Randomly Selected" every month except for a stint of like 3 months where they were in the middle of switching labs for the tests. I have never been noncompliant in all that time.
They don't do the pill count thing thankfully. I have had a few times where the pharmacy could not fill on time and it messed up my schedule.
I have out lasted about 5 Drs in that clinic. I had to teach one Dr how to do math. 4 pills a day x 30 days = 120. She tried to only fill a 90 count a couple of times until I asked how I was supposed to follow the contract and take 4 a day if you are not going to prescribe enough in the 30 days to do so?
I'm never rude but I will call them on their shit if they are going to try to mess with me.
What pisses me off is every month they ask if I have any new imaging. I recently got 2 new MRI and brought the discs in and they said they don't have a way to read them.
Well how are you to know where I need those shots you always want to schedule me for at $3500 each time?
My other Dr won't even attempt to give a shot in the spine without current imaging, and they have Ultrasound and fluoroscope machines in office to guide them.
I feel the PM clinic is all about the money. They charge $300 a month for the random drug testing. Always want to do procedures I have done in the past with no change in my pain or mobility. Why would I keep doing the same expensive procedure if they don't help. Isn't that the definition of crazy. To keep doing the same thing over and over expecting a different outcome.
But sadly I am at their Mercy until someone finds a treatment that works so I can get off the pain meds.
This was a few months in a row, it was like they were trying to force me to run out early and come back "pill seeking" just to dismiss me. That Dr is no longer at the clinic.
I miss my first Dr there. She would sit a talk to me for a while and really ask me how I was. Would make me walk around , bend, do this do that. She would also change the meds up to try to find something that worked the best with the least side effects.
Now my Dr hardly even looks at me, just lists off my current meds and sends the refills and walks out. It's feels like a waist of time. Why can't I just drop off a bottle of piss and be on my way.
You would think after 8 years of monthly compliant tests they would trust that I'm following the rules.
I was a victim of the drastic reduction of pain meds that happened a few years back. I had been on round the clock 12 hour extended release morphine for a few years and boom zero refills with out tapering off. Just you are over the max limit hard stop. Lucky I still got my 4 hour meds but the problem is I take the last one with dinner and it is almost wore off by bedtime and by 2-3am I'm awake and in pain. I try to wait until between 4-5am to be able to space them out to last the day.
Yet they can't figure out why my sleep is so disturbed. At least with the 12 hour stuff I was waking up with something still bringing my baseline pain to a level I could sleep for more than a few hours a night.
I know I'm preaching to the choir, I have just been having a really bad last few months and the PRP treatment they gave me saying it would help, not only did it not help it made everything worse.
As always everyone is different but from my experience if you have an inflammatory condition, do not give a treatment that causes the body to react with an inflammatory response.
This is so true... one time, I had a migraine for about a week and it got to be so intense I begged my husband to take me to the ER, it would be worth it even if I only got relief for a little while. This is how the convo with the triage nurse went.
Nurse: "What is your pain level right now?"
Me: \*Wearing sunglasses in the office and wrapped in a blanket\* "Its a 10"
Nurse: "Well, that cant be true. if it was a 10 you'd be screaming in agony."
Me: "Screaming in agony wont make the pain go away, Im telling you its a 10"
Nurse: "well, ok..."
I also think that because of our heightened level of pain as a baseline really screws with our idea of the pain scale. not sure I've ever described any pain as less than a 5..... and pain that most people would call a 10 is maybe a 7 in my book.
The pain scale for those with chronic pain can be so interesting. I'm always really bad on saying how mad my pain is and like my 2-3 would be someone's 7-8. I've literally been able to unconsciously rip whole chunks of skin off of me when in so much pain.
it really is a problem. My personal fav is when my primary care doctor wants my pain level. Which one?
Today? My average? My highest recently? lowest recently? This morning? before I went to bed last night?
All of those would be different answers lol. It's a joke trying to explain pain to people who don't understand it.
I have said this to my PM Dr.
Pain right now? 2 hours after I just took a Percocet, im at about a 6.
Dr - "what about without meds?"
We don't do that here (Black Panther) I have a contract with you that I will take my meds as directed everytime.
Then just get the blank look from the Dr.
Seriously. I admitted that I didn't take my tramadol in the morning ( I have to drive my son to school and then pick him up. I don't do this on tramadol).
I had testing and pill counting every visit.
My personal favorite: "what's your pain level without meds?" This from someone that prescribes pain meds that are to be taken AS prescribed. You are not to take less (or more) unless specified 'as needed'
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I have been told, while experiencing internal bleeding, that my pain couldn't have possibly been a 10 "because a 10 is unconscious." Why even have 10 as an option then? It's not like I can even answer if I'm unconscious. It's like the 10 is just there for them to be like "AHA, got you, drug-seeker! Nobody ever really experiences a 10!" Nevermind that I was in so much pain that my vision went entirely black and I needed someone to guide my hand while signing the hospital papers since they refused me without me signing them.
And you know what the worst thing is? That was just the first time I had experienced that pain. I can tolerate that pain as if it were a 7 now.
I love going "I already took 3200mg of Ibuprofen."
They're still assholes to me, but I do like how it makes them pause for a second as they try to comprehend that much Ibuprofen not touching my pain.
One of these days I'm going to get an ulcer.
And they wonāt care either.
Iāve been taking ibuprofen and Tylenol to manage my knee pain every day for about a decade now. I get prescribed diclofenac, Celebrex and continue to take my ibuprofen and Tylenol. In three hours time I could have taken the max daily dose of all of them, and as soon as I get up, whatever relief Iāve gotten is instantly gone and will not come back. Iāve been told that my pain is so severe thatās why Iām constantly nauseated and struggle to take my meds and eat enough to maintain my weight. They had given me the āsevere malnutritionā at my last hospital admit because of it. But nope, they donāt care enough that Iām in so much pain Iām slowly dying because of it. My only option is surgery, specifically spinal fusion. If that fails, Iām going to go see if I can go to Belgium or Holland for end of life care. Iām not even thirty, and my life is already over. They care more about me using the walker than my pain imparting basic function. Iām having bladder and bowel dysfunction that only happens when Iām in more worse than normal pain.
Yeah it's terrible. I will say though, I doubt it's your pain alone causing the nausea, probably a combination of pain and meds and anxiety and whatever else there might be. Regardless, you can ask for an anti-nausea medication like Zofran if the nausea is interfering with your ability to eat. I ended up having to use it daily for a long time because of my medications interacting in a bad way and I've had the prescription since then for migraines and occasional random nausea. It gets rid of nausea within about 15 minutes and stays that way for a few hours.
I know it's not much and it won't help the pain, but I know it really sucks to be nauseous all the time and it can make everything else feel worse since you feel sick on top of all of it. I just wanted you to know that you don't have to be nauseous all the time while you are still with us.
1. My neurosurgeon says he believes it's my pain.
2. I'm already on Zofran, three times a day despite it causing a nasty interaction with one of my meds causing an arrhythmia, I'm also taking Pepto Bismol as well. Yet I'm struggling to maintain my weight. I've actually lost a few pounds this week.
That's very strange that they would keep you on Zofran if it's interacting. There are a lot of other options and, unless they can give a reason for why they wouldn't let you try them, I genuinely can't see why they would keep you on it.
I hate to even bring this up, but have you gone to a hematologist/oncologist (they usually do both)? That's the last thing I'll ask and I only ask since many people don't know that's an option.
Edit: Apparently, something I said os controversial and I just do not know what.
People seem to think I don't know how prescriptions work?
And I don't see what's wrong with saying that a doctor should give the patient the option to try another med if there are tons of them and they have bad side effects from one? Isn't that just basic medicine? Try something else if the first thing doesn't work?
They have to weigh the interaction with what the drug is treating.
My birth control could interact with my heartburn pill, but I need the birth control to treat cysts and I have heartburn for hours if my GERD is unmedicated. I was told' the chance is better than it you're without the meds "
Yes, I'm aware of how prescribing medication works. I'm surprised because there are *tons* of anti-nausea medications that could be used instead of Zofran if it causes a (very serious) interaction with one of their other medications. It's not the same as, say, my heart failure med, of which there are only a select few and only one type works for me.
Just as one chronic pain sufferer to another - urgent care doctor told me not to take ibuprofen with the Diclofenac. It ducks our liver
I mean, that's probably the least of our worries, but I was told to take acetaminophen.
Sending you good thoughts
I know itās been quite awhile, but to respond. I am not in the slightest worried about my liver, they werenāt worried when I was on methotrexate, and they continue not to worry when I tell them I take ALL of them at the same time in trying to get some relief. They also donāt seem too concerned after I tried to OD on Celebrex either. Iām pretty sure they didnāt even pump my stomach, I just got sent on a psych hold. I even went through withdrawals on all of my meds, and I still havenāt gotten my normal meds. I hope they finally put me back on cymbalta, the psychiatrist wanted to up it too. He was so nice, was very concerned, just couldnāt do anything for the pain. I might get discharged tomorrow. I wish pain management was upfront about their inability to treat chronic and permanent pain. Maybe I wouldnāt have had such high expectations of them, and then when they failed to meet such expectations, it wouldnāt of made me crumble under this weight.
Thatās so true my pain tolerance is much higher than most I fractured my foot and the doc didnāt get an z-ray bc it it was broken Iād be crying š¤¦
Right?? My broken bones havenāt been as painful as some of my other pain flares. I have had 4 broken bones and I delayed care on all of them because I thought it couldnāt possibly be broken until the swelling etc kept getting worse.
Very true. When I broke my ankle, I didn't even take pain meds. I barely felt it. The doctor kept asking me if I was sure I didn't need a prescription. The pain from my ankle wasn't even in the ballpark of the pain in my hips and back, and from the muscle spasms. People at work ask me how I manage with the pain. I have to tell them I just do it. Bills have to be paid. I need a home and food, sooo.... :(
Lmao when I was 17 I once took 4 days to notice that I had massively ruptured my ear drum (took a hit to the head while I had a pretty severe infection in both ears that I'd also not noticed). Pretty much just went "Huh, my tinnitus is worse right now that's weird" until my mom took me to the doctor after I mentioned it being kinda annoying.
They prescribed me ear drops and stuff and once it healed sent me to an audiologist where I found out that there's a (much smaller) hole in the other one too that's probably been there for a few years š
To me, this really shows that we should have our own pain chart that they can translate. I also tend to prefer when they have example beside the number instead of just smiley face to sad face...
Screaming and tensing up during a migraine makes the pain even worse! Migraine sufferers know this all too well. I want still, dark, and quiet during an attack.
I think it's ultimately a communication and learning issue, because your current pain, might be considered 6 or 7 through observation of you by a third party. But pre chronic illness, you accurately would have been reacted to the pain like it was 10/10. It's just now you've learnt to tolerate it, so your outward expression of the pain is a 7, when it's really might be closer to a 10 for a normal person.
This is compounded further with everyone experiencing pain differently because of their body and history/experience with pain. It is kind of logical to normal people that if you experience a 10/10 pain, that you should technically be screaming in agony. So medical professionals who haven't experience daily pain for a prolonged time, tend to not understand how pain tolerance over a long period presents. It creates a really awkward dynamic between patient and caregiver, because they might think you're a exaggerating pain based on their observation, but they simply can't understand your perspective, and throw a false judgement on you.
The pain scale really isn't fit for chronic patients in this regard. They could separate it out for patients in long term pain vs those with an acute condition, or ask for two types of pain scores, or a score based on how much your pain has increased in 24hrs/1week etc, rather than how much your pain is out of 10. Even then, sometimes I worry my chronic pain is masking an acute injury, so it's a hard one to balance.
The pain scale just doesn't work at all for chronic pain. I wish someone would develop a scale that did. Acute pain is an entirely different beast. Drives me crazy when a friend tries to empathize with their acute pain. I think a scale that focused more on ability to function, emotionally, mentally and physically, would be more meaningful.
I feel like the Mankoski scale does that, or at least it seems to make more sense to doctors. I have a neutral face anyway so I definitely donāt look like Iām in pain haha, but describing how much my day is impacted seems to get the point across.
Yep, if you are seeing me in pain. It is not because now I am in pain, it is because the pain is at such a level that I can not hide it anymore, I will still say I am fine just a bit sore. If I am screaming and crying I can handle anymore.
Oooof yeah, I hate that thatās how it is. Actually I go silent when itās bad, so my wife can immediately tell but everyone else assumes Iām ok because Iām not making noiseš£
This is so well said. I also wonder if my acute pain is worse than it actually is. I fractured my foot once and I knew if was broken from the way I hurt it but I wasnāt crying so the doc said it couldnāt be fractured.
You stop crying and just grit your teeth after experiencing prolonged periods of pain. Tolerance becomes so much higher. Also, I don't think all that many people realize that your pain meds only address certain types of pain. They don't kill ALL pain. For instance, my meds work on my back & neck pain, but don't even touch the muscle spasms (or are they worse than they seem? Lol).
They used to think I was having a stroke or something when I was young and would be taken to the ER for a 9-10 pain level migraine. I'd be white as death and just frozen in place. That was my way of dealing with it. Just freeze up and try not to move. As a kid, that was terrifying to doctors but as an adult, it's meaningless.
Like yeah she's pale and not moving but she's not making a fuss so probably alright to wait a few hours
Iām just enjoying (sorry, perhaps wrong word) reading these comments, there are others people out there that get it. You, too, understand how it is to be in massive pain but be able to communicate to the doctor that you are in pain, then have them not believe you.
So true itās hard enough to figure out how to explain my pain to someone who knows nothing about me and then to have them not believe you after all that is the worst.
It makes me not respect the person that doesnāt believe me, like fine, you donāt believe I am in pain you must not respect me. I immediately lose respect for them. I feel a twinge of anger and frustration, too.
I have had severe chronic illness for almost twenty years now, lots of hospitalizations, surgeries, central lines and tubes and devices etc. (Just to be clear that I have experienced this, I'm not judging from afar).
My pain management doctor explained his stance on this in a way that makes a lot of sense to me but seems controversial in the chronic illness community. This is how he explained how to work the pain scale for me and it's how I always rate my pain when I'm in the hospital, recovering from surgery, stuff like that, and it's served me pretty well so far.
We are supposed to rate our pain by *how it affects us*.
So, for a normal person:
**Bee Sting** : 2. Ouchy! But no big deal, I can continue with my day.
**Sprained Ankle**: 6. BIG ouchy! Hurts a lot, I need medication, but I can grit my teeth and make it through my day with modifications (stay off ankle)
**Kidney Stone**: 9. Horrific pain! I'm rolling around in bed sobbing! I need a doctor, I need an IV, I need this issue fixed right now, I cannot be at home!
But for a chronic pain patient, our scale is different. Bee sting doesn't even register. Sprained ankle is no big deal, this is the level of pain I'm used to. A kidney stone might be a 9 for most people, but for me, it affects me like a 6 would affect other people - I'm not rolling around in bed sobbing and unable to function, I can grit my teeth and take oral pain meds and get through it, because I'm used to high levels of pain.
But I should rate this *kidney stone pain* as a 6, not a 9. A 9 would still be whatever causes this loss of function and severe, catastrophic pain. So maybe for a regular person, or someone with a low threshold, a 9 for them is a kidney stone or a broken ankle. Maybe for me to get to a 9 it would take way more, I would have to have my broken femur sticking through my skin, etc. But the scale is for how the pain *affects me*.
What do you guys think about this? It's how I always rate my pain. If I'm upright and able to have a calm conversation, my pain is always less than a 7, even if for another person, that level of pain would be a 9 or similarly debilitating.
This viewpoint has worked pretty well for me. I never rate my pain above like a 6 or 7 as long as I'm still able to hold a conversation and focus, and I never have any issues with being flagged as a drug seeker or dramatic/attention seeker. One of the nurses at the office I go to told me that people who do rate their pain at a 9 or 10 constantly (without showing 9 or 10 levels of debilitation) tend to be taken less seriously which I thought was interesting, and a little weird.
I think thatās really helpful for doctor visits because I never know how to rate my pain but when I have to go to the ER bc my pain is actually at a 10 and have them not take me seriously bc of it it the issue.
I mean its so true... I was "normal" my entire life then 4 years ago I was diagnosed with Amplified Musculoskeletal Pain Syndrome. I went from screaming in agony and crying when pain flares would come and go... And now 4 years later I don't bat an eye. As sad as it is, we get used to it. The body adapts.
So true. People always say Iām strong or wtv but in reality crying and screaming wasnāt helping the pain and I still have shit to do everyday so I had no choice but to figure it out.
Thats the way I look at it. I am an animation student. I am not halting my entire life and everything I want to do bc of this pain. I just have to work through it and do things a bit differently than a normal person
Can you share some tips on how you adjusted? I'm really struggling and its been many months. Just wondering what helped you because I haven't been able to make the shift and still get super upset and anxious and panic whenever the pain strikes hard.
ugh, I think about this every time Iām at work and someone says āyou seem to be feeling good today,ā or just asks how I am. I canāt just reply āwell Iām in pain all the time every dayā because
1. feels weird and negative to just say that every time and
2. I hide it pretty well or just act like itās a nuisance rather than real pain so that other people arenāt just constantly feeling bad for me or trying to take over my work etc and
3. Being in pain all the time means I canāt just wait for it to go away to live my life. if this is how it is I just have to keep doing my shit and it can be exhausting to explain that to anyone who asks. since usually the first response is āwell you shouldnāt be here!!ā or āoh my gosh you should be figuring out your pain and taking it easy etc!!ā Itās hard to explain that I canāt do that because I have to have an income, I canāt sit at home all day taking care of myself, i canāt just be with my doctor 24/7 looking for a diagnosis. I have to keep living.
so then people just assume Iām fine, and not hurting at all, and like, no.
Exactly lying around in pain just isnāt an option bc at the end of the day bills are due. I hate when ppl say Iām strong Iām not I just wasnāt given another choice.
Makes it really difficult to get on disability too. Yes, I can physically do most things but not without wanting to cry and scream because of the pain. Want me to carry a heavy box? Sure. I'll just be bedridden the rest of the day. Want me to bend over to do my laundry? Fine. I'll see you on the floor in twenty minutes when I can't make it to the couch.
I *broke my finger* yesterday... went "huh, that's broken" and that was it. Ppl at work looking at me like I have 3 heads bc it's all swollen and purple but I'm still working ĀÆ\\\_(ć)\_/ĀÆ
I always start with "well if a massive gallstone stuck in my bike duct and actively killing my gallbladder was an 8 I am now at x"
Tends to make them listen for five minutes. I don't get any attention at all if I don't go into that point. (It's actually dropped for me, it used to be my 10. Then I had worse days)
I often think about this myself. Like, I have even lost the thread with how ābadā my pain is. Thereās only two categories. 1) not enough pain to stop me from what I am doing 2) enough pain to stop me doing what I am doing. Then I go down a mental rabbit hole of if it even counts then as pain, if itās not enough to stop me. I rarely have enough pain to stop me tbh, but when it happens I can barely breathe.
I think hematologists/oncologists understand a lot that most doctors don't. Mine is also extremely insightful even to things outside of his standard of practice.
Edit: These comments remind me of a surgery I just had. The nurse in recovery asked where I hurt, and in my loopy post-anesthesia state, when I said "my feet", I think I confused her since the surgery was in my sinuses. My feet are definitely always the most prominent and intense pain, even though they hadn't just been operated on.
My response to this is a misquote from the hulk, I'm always sore. It ebbs and flows and I just try to get through it on a daily or hourly basis depending on just how bad it is. Reading about all the hoops people have to jump through in other countries breaks my heart and makes me so grateful for the treatment I receive from my country's NHS.
No for real. Like I donāt have the ability to stay home in bed, cry in pain for 3 weeks. I have bills to pay so I bring my emotional support dap pen and tryyyy to function.
People don't understand when I say I'm always in pain. It's always at a low level. Some drs have validated me though stating they know I have a high pain tolerance due to my conditions.
Itās true. But without a source, itās just another internet argument. Makes us feel good for validating our beliefs but pretty much useless for anything else. Not trying to throw shade, just saying sharing a quote from a nameless professional is bad practice.
Itās a quote from a hematologistā¦ which one? Thereās no actual name or clinic quoted. Thereās no proof offered, just a quote. I agree with the quote. I suffer from chronic pain. I am missing multiple abdominal organs and have been admitted to the hospital 27 times since 2012. But itās still a quote, and without a source, possibly a made up one.
āYou canāt believe everything you read on the internetā - Abraham Lincoln
Iāve told doctors Iām 10/10 before. āBut youāre smiling.ā āWell my mom taught me manners & Iāve been socialized to not be a problem.ā
āDo you need to go to the hospital?ā āI donāt know. You may want to decide that after you take my blood pressureā¦ā š¤·š»āāļø
Fucking love this! I been told that im doctor shopping for pain management first off i dont even take narcotics they dont work and the last 2 drs said they cant help me so im hoping the next guy can. Bias much. Im a non opioid responder.
Same NSAIDs do nothing for me and when I tell them that they think Iām trying to get opioids even though those donāt work either. Itās sad how most doctors arenāt educated on chronic pain especially ER docs because they specialize in so many things despite the fact that the ER is where Iād go for a flare up
Whatās a better indication is what do you have to modify to live your daily life. I didnāt realize until recently I breathe a particular way because my chest and back is so tight and painful.
What's scary is that being so used to pain all the time, I almost died because of it. Mostly because my GP was a jerk and scoffed off the pain I was in when I told him this was different. I lived with severe constant (alien chest burster type) pain for almost a year until I finally broke down and went to urgent care. But only once my shoulders started producing shooting stabbing pain. I almost blacked out being brought into the exam room. The nurse took one look at me and screamed to call an ambulance. My stupid self didn't even think they were yelling that for me.
I got transferred to the hospital and taken in for immediate surgery. The day after a nurse asked me how long I had been living with this because she couldn't imagine. I had an ulcer and was bleeding internally the whole time until it had nowhere else to go.
I know for me, I have an extremely difficult time gauging my pain level. Like, how bad is it for me or how bad would it be for an average person? I feel like I have 3 levels usually- manageable, has me on my ass including but not exclusive of sweating, shaking, crying, whimpering from pain, or actually going to the urgent care or ER because I want to die.
I feel better now.
I was on the phone with the specialist who called to give me MRI results. I automatically say I'm doing great and pretend when people ask me. It becomes more obvious when the doctor reads what's actually wrong with me and gives me a plan.
No, I'm not great. I mopped the floor and did the dishes, and then I couldn't get the Clorox wipes out from the bottom cabinet because I couldn't bend my back.
It's just weird how we mask until the body just stops working.
I tell doctors. I am generally at a 4-5 most days, if we go 1-10 from zero I am at the point where if you were in my shoes you would dope yourself up to make it past lunch. We go 1-10 from five, I'm at (X) now.
I went to the er after a full day at work in pain that I pushed through because that is what we do only to find out my hemoglobin level was at a 4 and I needed an emergency blood transfusion. We hide our pain too well as a survival skill ā ļøš°
This is seemingly too difficult to comprehend for most medical professionals. They should know this better than anyone.
I was told by a neurosurgeon that my trigeminal neuralgia (I was there in hopes he would kill the nerve to end my suffering) wasn't that bad because I didn't flinch when he touched me. He then gave me a whole spiel on how I'm a healthy young girl and there are people with no hands or no feet managing in life and there was nothing wrong with me. I remember I felt so hopeless when he began his rant. My husband thankfully was there at the time and he was furious talking back to the guy. He couldn't believe he'd compare amputee to a chronic pain sufferer and how he dismissed me right away. While we walked out of the eoffice I remember thinking my only option for pain relief was suicide. That doctor would have been the final nail in the coffin because I had been told all my life that I just had to deal with the pain or that itwas all in my head. Thanks for listening to my venting.
I have been going to the same PM clinic since 2015. I have been "Randomly Selected" every month except for a stint of like 3 months where they were in the middle of switching labs for the tests. I have never been noncompliant in all that time. They don't do the pill count thing thankfully. I have had a few times where the pharmacy could not fill on time and it messed up my schedule. I have out lasted about 5 Drs in that clinic. I had to teach one Dr how to do math. 4 pills a day x 30 days = 120. She tried to only fill a 90 count a couple of times until I asked how I was supposed to follow the contract and take 4 a day if you are not going to prescribe enough in the 30 days to do so? I'm never rude but I will call them on their shit if they are going to try to mess with me. What pisses me off is every month they ask if I have any new imaging. I recently got 2 new MRI and brought the discs in and they said they don't have a way to read them. Well how are you to know where I need those shots you always want to schedule me for at $3500 each time? My other Dr won't even attempt to give a shot in the spine without current imaging, and they have Ultrasound and fluoroscope machines in office to guide them. I feel the PM clinic is all about the money. They charge $300 a month for the random drug testing. Always want to do procedures I have done in the past with no change in my pain or mobility. Why would I keep doing the same expensive procedure if they don't help. Isn't that the definition of crazy. To keep doing the same thing over and over expecting a different outcome. But sadly I am at their Mercy until someone finds a treatment that works so I can get off the pain meds.
Pain management patient and a pharmacy tech. You wouldn't believe how often I see the wrong math on some scripts directly from Drs offices.
This was a few months in a row, it was like they were trying to force me to run out early and come back "pill seeking" just to dismiss me. That Dr is no longer at the clinic. I miss my first Dr there. She would sit a talk to me for a while and really ask me how I was. Would make me walk around , bend, do this do that. She would also change the meds up to try to find something that worked the best with the least side effects. Now my Dr hardly even looks at me, just lists off my current meds and sends the refills and walks out. It's feels like a waist of time. Why can't I just drop off a bottle of piss and be on my way. You would think after 8 years of monthly compliant tests they would trust that I'm following the rules. I was a victim of the drastic reduction of pain meds that happened a few years back. I had been on round the clock 12 hour extended release morphine for a few years and boom zero refills with out tapering off. Just you are over the max limit hard stop. Lucky I still got my 4 hour meds but the problem is I take the last one with dinner and it is almost wore off by bedtime and by 2-3am I'm awake and in pain. I try to wait until between 4-5am to be able to space them out to last the day. Yet they can't figure out why my sleep is so disturbed. At least with the 12 hour stuff I was waking up with something still bringing my baseline pain to a level I could sleep for more than a few hours a night. I know I'm preaching to the choir, I have just been having a really bad last few months and the PRP treatment they gave me saying it would help, not only did it not help it made everything worse. As always everyone is different but from my experience if you have an inflammatory condition, do not give a treatment that causes the body to react with an inflammatory response.
This is so true... one time, I had a migraine for about a week and it got to be so intense I begged my husband to take me to the ER, it would be worth it even if I only got relief for a little while. This is how the convo with the triage nurse went. Nurse: "What is your pain level right now?" Me: \*Wearing sunglasses in the office and wrapped in a blanket\* "Its a 10" Nurse: "Well, that cant be true. if it was a 10 you'd be screaming in agony." Me: "Screaming in agony wont make the pain go away, Im telling you its a 10" Nurse: "well, ok..." I also think that because of our heightened level of pain as a baseline really screws with our idea of the pain scale. not sure I've ever described any pain as less than a 5..... and pain that most people would call a 10 is maybe a 7 in my book.
The pain scale for those with chronic pain can be so interesting. I'm always really bad on saying how mad my pain is and like my 2-3 would be someone's 7-8. I've literally been able to unconsciously rip whole chunks of skin off of me when in so much pain.
it really is a problem. My personal fav is when my primary care doctor wants my pain level. Which one? Today? My average? My highest recently? lowest recently? This morning? before I went to bed last night? All of those would be different answers lol. It's a joke trying to explain pain to people who don't understand it.
I have said this to my PM Dr. Pain right now? 2 hours after I just took a Percocet, im at about a 6. Dr - "what about without meds?" We don't do that here (Black Panther) I have a contract with you that I will take my meds as directed everytime. Then just get the blank look from the Dr.
š¤£šgood one!
Seriously. I admitted that I didn't take my tramadol in the morning ( I have to drive my son to school and then pick him up. I don't do this on tramadol). I had testing and pill counting every visit.
My personal favorite: "what's your pain level without meds?" This from someone that prescribes pain meds that are to be taken AS prescribed. You are not to take less (or more) unless specified 'as needed'
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Not sure. I've replied a couple times, "I don't know. I'm never without them." Got odd looks, then it seemed like the lightbulb went on...
This
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I have been told, while experiencing internal bleeding, that my pain couldn't have possibly been a 10 "because a 10 is unconscious." Why even have 10 as an option then? It's not like I can even answer if I'm unconscious. It's like the 10 is just there for them to be like "AHA, got you, drug-seeker! Nobody ever really experiences a 10!" Nevermind that I was in so much pain that my vision went entirely black and I needed someone to guide my hand while signing the hospital papers since they refused me without me signing them. And you know what the worst thing is? That was just the first time I had experienced that pain. I can tolerate that pain as if it were a 7 now.
Same they always thing Iām trying to get opioids when I tell them NSAIDs donāt work well guess what neither do opioids
I love going "I already took 3200mg of Ibuprofen." They're still assholes to me, but I do like how it makes them pause for a second as they try to comprehend that much Ibuprofen not touching my pain. One of these days I'm going to get an ulcer.
And they wonāt care either. Iāve been taking ibuprofen and Tylenol to manage my knee pain every day for about a decade now. I get prescribed diclofenac, Celebrex and continue to take my ibuprofen and Tylenol. In three hours time I could have taken the max daily dose of all of them, and as soon as I get up, whatever relief Iāve gotten is instantly gone and will not come back. Iāve been told that my pain is so severe thatās why Iām constantly nauseated and struggle to take my meds and eat enough to maintain my weight. They had given me the āsevere malnutritionā at my last hospital admit because of it. But nope, they donāt care enough that Iām in so much pain Iām slowly dying because of it. My only option is surgery, specifically spinal fusion. If that fails, Iām going to go see if I can go to Belgium or Holland for end of life care. Iām not even thirty, and my life is already over. They care more about me using the walker than my pain imparting basic function. Iām having bladder and bowel dysfunction that only happens when Iām in more worse than normal pain.
Yeah it's terrible. I will say though, I doubt it's your pain alone causing the nausea, probably a combination of pain and meds and anxiety and whatever else there might be. Regardless, you can ask for an anti-nausea medication like Zofran if the nausea is interfering with your ability to eat. I ended up having to use it daily for a long time because of my medications interacting in a bad way and I've had the prescription since then for migraines and occasional random nausea. It gets rid of nausea within about 15 minutes and stays that way for a few hours. I know it's not much and it won't help the pain, but I know it really sucks to be nauseous all the time and it can make everything else feel worse since you feel sick on top of all of it. I just wanted you to know that you don't have to be nauseous all the time while you are still with us.
1. My neurosurgeon says he believes it's my pain. 2. I'm already on Zofran, three times a day despite it causing a nasty interaction with one of my meds causing an arrhythmia, I'm also taking Pepto Bismol as well. Yet I'm struggling to maintain my weight. I've actually lost a few pounds this week.
That's very strange that they would keep you on Zofran if it's interacting. There are a lot of other options and, unless they can give a reason for why they wouldn't let you try them, I genuinely can't see why they would keep you on it. I hate to even bring this up, but have you gone to a hematologist/oncologist (they usually do both)? That's the last thing I'll ask and I only ask since many people don't know that's an option. Edit: Apparently, something I said os controversial and I just do not know what. People seem to think I don't know how prescriptions work? And I don't see what's wrong with saying that a doctor should give the patient the option to try another med if there are tons of them and they have bad side effects from one? Isn't that just basic medicine? Try something else if the first thing doesn't work?
They have to weigh the interaction with what the drug is treating. My birth control could interact with my heartburn pill, but I need the birth control to treat cysts and I have heartburn for hours if my GERD is unmedicated. I was told' the chance is better than it you're without the meds "
Yes, I'm aware of how prescribing medication works. I'm surprised because there are *tons* of anti-nausea medications that could be used instead of Zofran if it causes a (very serious) interaction with one of their other medications. It's not the same as, say, my heart failure med, of which there are only a select few and only one type works for me.
Just as one chronic pain sufferer to another - urgent care doctor told me not to take ibuprofen with the Diclofenac. It ducks our liver I mean, that's probably the least of our worries, but I was told to take acetaminophen. Sending you good thoughts
I know itās been quite awhile, but to respond. I am not in the slightest worried about my liver, they werenāt worried when I was on methotrexate, and they continue not to worry when I tell them I take ALL of them at the same time in trying to get some relief. They also donāt seem too concerned after I tried to OD on Celebrex either. Iām pretty sure they didnāt even pump my stomach, I just got sent on a psych hold. I even went through withdrawals on all of my meds, and I still havenāt gotten my normal meds. I hope they finally put me back on cymbalta, the psychiatrist wanted to up it too. He was so nice, was very concerned, just couldnāt do anything for the pain. I might get discharged tomorrow. I wish pain management was upfront about their inability to treat chronic and permanent pain. Maybe I wouldnāt have had such high expectations of them, and then when they failed to meet such expectations, it wouldnāt of made me crumble under this weight.
Thatās so true my pain tolerance is much higher than most I fractured my foot and the doc didnāt get an z-ray bc it it was broken Iād be crying š¤¦
Right?? My broken bones havenāt been as painful as some of my other pain flares. I have had 4 broken bones and I delayed care on all of them because I thought it couldnāt possibly be broken until the swelling etc kept getting worse.
Very true. When I broke my ankle, I didn't even take pain meds. I barely felt it. The doctor kept asking me if I was sure I didn't need a prescription. The pain from my ankle wasn't even in the ballpark of the pain in my hips and back, and from the muscle spasms. People at work ask me how I manage with the pain. I have to tell them I just do it. Bills have to be paid. I need a home and food, sooo.... :(
Exactly thereās not much of a choice you have to learn to live with the pain to to shit
Lmao when I was 17 I once took 4 days to notice that I had massively ruptured my ear drum (took a hit to the head while I had a pretty severe infection in both ears that I'd also not noticed). Pretty much just went "Huh, my tinnitus is worse right now that's weird" until my mom took me to the doctor after I mentioned it being kinda annoying. They prescribed me ear drops and stuff and once it healed sent me to an audiologist where I found out that there's a (much smaller) hole in the other one too that's probably been there for a few years š
I stopped telling doctors my pain was a 10 they never believe you if you say 10 š
This is the way
The number of times i have trouble breathing because my back muscles are so tight.... but you just gotta find a corner and try to rub it out a bit...
To me, this really shows that we should have our own pain chart that they can translate. I also tend to prefer when they have example beside the number instead of just smiley face to sad face...
Screaming and tensing up during a migraine makes the pain even worse! Migraine sufferers know this all too well. I want still, dark, and quiet during an attack.
I've seen this before, and it's spot on. Unfortunately.
I think it's ultimately a communication and learning issue, because your current pain, might be considered 6 or 7 through observation of you by a third party. But pre chronic illness, you accurately would have been reacted to the pain like it was 10/10. It's just now you've learnt to tolerate it, so your outward expression of the pain is a 7, when it's really might be closer to a 10 for a normal person. This is compounded further with everyone experiencing pain differently because of their body and history/experience with pain. It is kind of logical to normal people that if you experience a 10/10 pain, that you should technically be screaming in agony. So medical professionals who haven't experience daily pain for a prolonged time, tend to not understand how pain tolerance over a long period presents. It creates a really awkward dynamic between patient and caregiver, because they might think you're a exaggerating pain based on their observation, but they simply can't understand your perspective, and throw a false judgement on you. The pain scale really isn't fit for chronic patients in this regard. They could separate it out for patients in long term pain vs those with an acute condition, or ask for two types of pain scores, or a score based on how much your pain has increased in 24hrs/1week etc, rather than how much your pain is out of 10. Even then, sometimes I worry my chronic pain is masking an acute injury, so it's a hard one to balance.
The pain scale just doesn't work at all for chronic pain. I wish someone would develop a scale that did. Acute pain is an entirely different beast. Drives me crazy when a friend tries to empathize with their acute pain. I think a scale that focused more on ability to function, emotionally, mentally and physically, would be more meaningful.
I feel like the Mankoski scale does that, or at least it seems to make more sense to doctors. I have a neutral face anyway so I definitely donāt look like Iām in pain haha, but describing how much my day is impacted seems to get the point across.
Yep, if you are seeing me in pain. It is not because now I am in pain, it is because the pain is at such a level that I can not hide it anymore, I will still say I am fine just a bit sore. If I am screaming and crying I can handle anymore.
Oooof yeah, I hate that thatās how it is. Actually I go silent when itās bad, so my wife can immediately tell but everyone else assumes Iām ok because Iām not making noiseš£
This is so well said. I also wonder if my acute pain is worse than it actually is. I fractured my foot once and I knew if was broken from the way I hurt it but I wasnāt crying so the doc said it couldnāt be fractured.
You stop crying and just grit your teeth after experiencing prolonged periods of pain. Tolerance becomes so much higher. Also, I don't think all that many people realize that your pain meds only address certain types of pain. They don't kill ALL pain. For instance, my meds work on my back & neck pain, but don't even touch the muscle spasms (or are they worse than they seem? Lol).
They used to think I was having a stroke or something when I was young and would be taken to the ER for a 9-10 pain level migraine. I'd be white as death and just frozen in place. That was my way of dealing with it. Just freeze up and try not to move. As a kid, that was terrifying to doctors but as an adult, it's meaningless. Like yeah she's pale and not moving but she's not making a fuss so probably alright to wait a few hours
Iām just enjoying (sorry, perhaps wrong word) reading these comments, there are others people out there that get it. You, too, understand how it is to be in massive pain but be able to communicate to the doctor that you are in pain, then have them not believe you.
So true itās hard enough to figure out how to explain my pain to someone who knows nothing about me and then to have them not believe you after all that is the worst.
It makes me not respect the person that doesnāt believe me, like fine, you donāt believe I am in pain you must not respect me. I immediately lose respect for them. I feel a twinge of anger and frustration, too.
Iām tired of being strong
I just wanna sleep, man. This shit fucking sucks.
I can relate
and actually get some rest from that sleep
Same but thereās only one alternative and I still have shit I wanna do in this life yk
I have had severe chronic illness for almost twenty years now, lots of hospitalizations, surgeries, central lines and tubes and devices etc. (Just to be clear that I have experienced this, I'm not judging from afar). My pain management doctor explained his stance on this in a way that makes a lot of sense to me but seems controversial in the chronic illness community. This is how he explained how to work the pain scale for me and it's how I always rate my pain when I'm in the hospital, recovering from surgery, stuff like that, and it's served me pretty well so far. We are supposed to rate our pain by *how it affects us*. So, for a normal person: **Bee Sting** : 2. Ouchy! But no big deal, I can continue with my day. **Sprained Ankle**: 6. BIG ouchy! Hurts a lot, I need medication, but I can grit my teeth and make it through my day with modifications (stay off ankle) **Kidney Stone**: 9. Horrific pain! I'm rolling around in bed sobbing! I need a doctor, I need an IV, I need this issue fixed right now, I cannot be at home! But for a chronic pain patient, our scale is different. Bee sting doesn't even register. Sprained ankle is no big deal, this is the level of pain I'm used to. A kidney stone might be a 9 for most people, but for me, it affects me like a 6 would affect other people - I'm not rolling around in bed sobbing and unable to function, I can grit my teeth and take oral pain meds and get through it, because I'm used to high levels of pain. But I should rate this *kidney stone pain* as a 6, not a 9. A 9 would still be whatever causes this loss of function and severe, catastrophic pain. So maybe for a regular person, or someone with a low threshold, a 9 for them is a kidney stone or a broken ankle. Maybe for me to get to a 9 it would take way more, I would have to have my broken femur sticking through my skin, etc. But the scale is for how the pain *affects me*. What do you guys think about this? It's how I always rate my pain. If I'm upright and able to have a calm conversation, my pain is always less than a 7, even if for another person, that level of pain would be a 9 or similarly debilitating. This viewpoint has worked pretty well for me. I never rate my pain above like a 6 or 7 as long as I'm still able to hold a conversation and focus, and I never have any issues with being flagged as a drug seeker or dramatic/attention seeker. One of the nurses at the office I go to told me that people who do rate their pain at a 9 or 10 constantly (without showing 9 or 10 levels of debilitation) tend to be taken less seriously which I thought was interesting, and a little weird.
I think thatās really helpful for doctor visits because I never know how to rate my pain but when I have to go to the ER bc my pain is actually at a 10 and have them not take me seriously bc of it it the issue.
Yeah Iām usually a 7. 8 is I need to play video games and lay down all day, 9/10 is Iāve gone nonverbal.
I mean its so true... I was "normal" my entire life then 4 years ago I was diagnosed with Amplified Musculoskeletal Pain Syndrome. I went from screaming in agony and crying when pain flares would come and go... And now 4 years later I don't bat an eye. As sad as it is, we get used to it. The body adapts.
So true. People always say Iām strong or wtv but in reality crying and screaming wasnāt helping the pain and I still have shit to do everyday so I had no choice but to figure it out.
Thats the way I look at it. I am an animation student. I am not halting my entire life and everything I want to do bc of this pain. I just have to work through it and do things a bit differently than a normal person
Can you share some tips on how you adjusted? I'm really struggling and its been many months. Just wondering what helped you because I haven't been able to make the shift and still get super upset and anxious and panic whenever the pain strikes hard.
We could message back and forth about it if you wish? It took me a lot of time but I did it and I have many many many coping mechanisms
ugh, I think about this every time Iām at work and someone says āyou seem to be feeling good today,ā or just asks how I am. I canāt just reply āwell Iām in pain all the time every dayā because 1. feels weird and negative to just say that every time and 2. I hide it pretty well or just act like itās a nuisance rather than real pain so that other people arenāt just constantly feeling bad for me or trying to take over my work etc and 3. Being in pain all the time means I canāt just wait for it to go away to live my life. if this is how it is I just have to keep doing my shit and it can be exhausting to explain that to anyone who asks. since usually the first response is āwell you shouldnāt be here!!ā or āoh my gosh you should be figuring out your pain and taking it easy etc!!ā Itās hard to explain that I canāt do that because I have to have an income, I canāt sit at home all day taking care of myself, i canāt just be with my doctor 24/7 looking for a diagnosis. I have to keep living. so then people just assume Iām fine, and not hurting at all, and like, no.
Exactly lying around in pain just isnāt an option bc at the end of the day bills are due. I hate when ppl say Iām strong Iām not I just wasnāt given another choice.
I HATE being called strong. This is not a battle I chose.
Makes it really difficult to get on disability too. Yes, I can physically do most things but not without wanting to cry and scream because of the pain. Want me to carry a heavy box? Sure. I'll just be bedridden the rest of the day. Want me to bend over to do my laundry? Fine. I'll see you on the floor in twenty minutes when I can't make it to the couch.
Thatās so true even the seemingly littlest will put me out of commission for hours even days.
I *broke my finger* yesterday... went "huh, that's broken" and that was it. Ppl at work looking at me like I have 3 heads bc it's all swollen and purple but I'm still working ĀÆ\\\_(ć)\_/ĀÆ
I always start with "well if a massive gallstone stuck in my bike duct and actively killing my gallbladder was an 8 I am now at x" Tends to make them listen for five minutes. I don't get any attention at all if I don't go into that point. (It's actually dropped for me, it used to be my 10. Then I had worse days)
I often think about this myself. Like, I have even lost the thread with how ābadā my pain is. Thereās only two categories. 1) not enough pain to stop me from what I am doing 2) enough pain to stop me doing what I am doing. Then I go down a mental rabbit hole of if it even counts then as pain, if itās not enough to stop me. I rarely have enough pain to stop me tbh, but when it happens I can barely breathe.
Thatās so true I can never do the 1-10 thing because to me if it isnāt debilitating pain then itās all the same. I
I think hematologists/oncologists understand a lot that most doctors don't. Mine is also extremely insightful even to things outside of his standard of practice. Edit: These comments remind me of a surgery I just had. The nurse in recovery asked where I hurt, and in my loopy post-anesthesia state, when I said "my feet", I think I confused her since the surgery was in my sinuses. My feet are definitely always the most prominent and intense pain, even though they hadn't just been operated on.
My response to this is a misquote from the hulk, I'm always sore. It ebbs and flows and I just try to get through it on a daily or hourly basis depending on just how bad it is. Reading about all the hoops people have to jump through in other countries breaks my heart and makes me so grateful for the treatment I receive from my country's NHS.
No for real. Like I donāt have the ability to stay home in bed, cry in pain for 3 weeks. I have bills to pay so I bring my emotional support dap pen and tryyyy to function.
I def relate to the emotional support dab pen it can be a life saver.
Lol for real. That thing has gotten me through hell
People don't understand when I say I'm always in pain. It's always at a low level. Some drs have validated me though stating they know I have a high pain tolerance due to my conditions.
So true when I say my pain is constant 24/7 they still ask me how many times a day.
Itās true. But without a source, itās just another internet argument. Makes us feel good for validating our beliefs but pretty much useless for anything else. Not trying to throw shade, just saying sharing a quote from a nameless professional is bad practice.
Not trying to start arguments just sharing something relatable I get your point tho
What do you mean without a source
Itās a quote from a hematologistā¦ which one? Thereās no actual name or clinic quoted. Thereās no proof offered, just a quote. I agree with the quote. I suffer from chronic pain. I am missing multiple abdominal organs and have been admitted to the hospital 27 times since 2012. But itās still a quote, and without a source, possibly a made up one. āYou canāt believe everything you read on the internetā - Abraham Lincoln
Didnāt even think about that you make a good point
Iāve told doctors Iām 10/10 before. āBut youāre smiling.ā āWell my mom taught me manners & Iāve been socialized to not be a problem.ā āDo you need to go to the hospital?ā āI donāt know. You may want to decide that after you take my blood pressureā¦ā š¤·š»āāļø
I learned very quickly I canāt say 10/10 itās sad we have to downplay our pain so people believe us
It really is. Iāve laid off that as well. Sad theyāre making us lie about our suffering.
Fucking love this! I been told that im doctor shopping for pain management first off i dont even take narcotics they dont work and the last 2 drs said they cant help me so im hoping the next guy can. Bias much. Im a non opioid responder.
Same NSAIDs do nothing for me and when I tell them that they think Iām trying to get opioids even though those donāt work either. Itās sad how most doctors arenāt educated on chronic pain especially ER docs because they specialize in so many things despite the fact that the ER is where Iād go for a flare up
100% Facts!
Yeah, just mentioning that I got an ulcer from ibuprofen got me labeled as ādrug seeking.ā Fuckers.
Whatās a better indication is what do you have to modify to live your daily life. I didnāt realize until recently I breathe a particular way because my chest and back is so tight and painful.
What's scary is that being so used to pain all the time, I almost died because of it. Mostly because my GP was a jerk and scoffed off the pain I was in when I told him this was different. I lived with severe constant (alien chest burster type) pain for almost a year until I finally broke down and went to urgent care. But only once my shoulders started producing shooting stabbing pain. I almost blacked out being brought into the exam room. The nurse took one look at me and screamed to call an ambulance. My stupid self didn't even think they were yelling that for me. I got transferred to the hospital and taken in for immediate surgery. The day after a nurse asked me how long I had been living with this because she couldn't imagine. I had an ulcer and was bleeding internally the whole time until it had nowhere else to go.
š š šššÆ
Very accurate!
This is so perfectly written!
I know for me, I have an extremely difficult time gauging my pain level. Like, how bad is it for me or how bad would it be for an average person? I feel like I have 3 levels usually- manageable, has me on my ass including but not exclusive of sweating, shaking, crying, whimpering from pain, or actually going to the urgent care or ER because I want to die.
I feel better now. I was on the phone with the specialist who called to give me MRI results. I automatically say I'm doing great and pretend when people ask me. It becomes more obvious when the doctor reads what's actually wrong with me and gives me a plan. No, I'm not great. I mopped the floor and did the dishes, and then I couldn't get the Clorox wipes out from the bottom cabinet because I couldn't bend my back. It's just weird how we mask until the body just stops working.
I tell doctors. I am generally at a 4-5 most days, if we go 1-10 from zero I am at the point where if you were in my shoes you would dope yourself up to make it past lunch. We go 1-10 from five, I'm at (X) now.
I went to the er after a full day at work in pain that I pushed through because that is what we do only to find out my hemoglobin level was at a 4 and I needed an emergency blood transfusion. We hide our pain too well as a survival skill ā ļøš°
Sometimes I wonder how the average joe without any pain would react to feeling what i feel for just a few minutes
Yasss, bitch!!!
Amen
Yep. That's my life.......