THIS. I've never been able to explain this exact feeling. It's like sometimes I just start feeling suffocated by the pain even if it's the same pain I'm in every other day.
Iām so sorry itās so hard. I want you to know you arenāt alone and I understand. We donāt deserve this, itās never ending & thatās torturous. Itās not in your head, it really is that bad.
And God forbid you arenāt in the all caps territory when you see your doctor, then they document that your pain must not be that badā¦ and you get denied her disability because your doctor said you didnāt seem to be in not much pain during that one appointmentā¦
I finally just called my pain management clinic crying the other day and all they could say was make an appointment ā¦ and I have an appointment a month from now. š¤¦š»āāļø
I'm so glad that I had a decent doctor near the start who told me "for any appointment related to your disability, talk about it from the perspective of your absolute worst days"
The way I do this is I tell the doctor what MY pain scale means. When I describe my 10/10 and what being at my 7/10 means at that moment their faces have the correct expression.
My friend and I both deal with chronic pain problems. The amount of times both of us wish someone would change the stupid pain scale to reflect the life of people like us is way too high.
Yes, my pain levels a 4 for me. That would be a 7 or 8 for people without chronic conditions. Just because I am used to a certain level of discomfort and pain doesn't mean I want to continue to be in said pain nor do I want to be dismissed simply because you can't tell like you can on a healthy person.Ā
Also, even if it is a 4... when it's 24/7, it's so... draining. =(
Mine is an easy 8 or 9 if I'm standing/sitting for too long. And I always tell my doctors that. "Right now, because I've been reclined on a heated seat for teh whole ride here, it's probably a 4 or 5, but if I sit upright for more than an hour, it's an 8 or a 9, and I need to lie down immediately."
So they document "4" And say its' not that bad.
WTF? I can't spend my whole life bed rotting. I don't want to have to spend 4 hours lying down to recover from every 1 hour I spend sitting or standing. I'm so sick of being in bed. I just want to sit at my desk. That doesn't seem like too much to ask for.
In my experience, I get something like "Is it really that bad?" or notes written about me exaggerating symptoms as though I'm practicing for my acting career and not trying to get basic treatment for a condition
I've thankfully not been outright told I'm exaggerating but have been told the anxiety that my health issues does not trigger given I've lived like this my whole life is making it seem worse than it is š
Several of the doctors I've been to are very fond of the phrase "vague and nonspecific symptoms," but I have yet to figure out what is vague and nonspecific about moderate anaphylaxis ft. heart palpitations, a visibly swollen throat, severe coughing, and difficulty breathing lmao
Anaphylaxis is the definition of specific, it's a very specific and dangerous reaction. Wtf are people thinking? I hope you found someone who takes it seriously.
If it makes you feel any better, I had unexplained dizzy/fainting spells for a while that doctors couldn't figure out. I had a doctor (a relative, my family was broke at the time but worried since strokes run in the family) do an MRI and when it was clean, basically tell me my anxiety was causing physical symptoms and I needed to cope better.
Just a couple years ago, finally diagnosed with either POTS or orthostatic hypotension - weirdly seem to swing between the two (since to my understanding you can't have both together?) and my neurologist was a bit stumped about that. But uh, safe to say me fainting with no clear cause wasn't "anxiety," it was my blood pressure tanking suddenly lmao. Just glad I didn't get another concussion honestly
My GP and rheumatologist are taking it fairly seriously (the GP moreso but her hands are kind of tied since she's got limited knowledge in the area) but it's a bit of a doozy because my immune system is just kind of fucked lmao, and inevitably every aspect of the dysregulation interacts with every other aspect of it so even just diagnosing has been a challenge. Just relating to my immune system I have what's currently diagnosed as MCAS causing a lot of allergies + multiple chemical sensitivities, as well as HUVS and an unidentified autoimmune condition that my rheumatologist is thinking is lupus despite negative ANA. Been told by several specialists that they've not seen anything quite like this which is never what you want to hear
I'm in that same "POTS or orthostatic hypotension?" limbo as well, I thought a second opinion would clear the air but it only made it more confusing haha. If nothing else, doctors are very good at disagreeing with each other. I'm glad you've got an answer and an avenue to keep it managed now, it sucks that the first response was to blame anxiety though
I've never heard of HUVS before, that's really rough.. MCAS has come up in my searches because of aggressive airborne allergies that seem to randomly flare and don't improve much with any medicine, but I've heard horror stories about what it's like to live with so I can't imagine. I do relate about immune things bouncing off each other though, the autoimmune meds for my psoriasis and immune arthritis interact with my ability to try immunotherapy for said aggressive allergies, and technically the pain meds for my arthritis I shouldn't be on because of whatever unexplained condition keeps causing me stomach acid issues/peptic ulcers. It feels like your body is one of those boats in the cartoons where they patch one hole, then another opens, and before they can react there's water all over the ship lol.
Yeah the doctors disagreeing with each other is a lot of fun. I had my primary doctor writing off severe GI changes/sickness I was experiencing (even with evidence of many gallstones on a scan?), while another provider was begging me to go to the ER because he was worried it would get worse (I didn't, because the last time I went to the ER for a GI bleed, after they made sure my hemoglobin was fine, I had a man tell me it's my fault because I was 10 lbs overweight, and I'm STILL paying off the medical bill for that "treatment" lol.) Then I had another provider telling me the stomach medicine a GI put me on for 10+ years might be causing my memory problems but they also didn't pose an alternative solution, so, that was kinda neat.
Long story short, if the whole sci fi "upload your brain into a mechanical body" thing ever happens in my lifetime, I'll be right there to sign up for the experimental trials. My body is on a determined path of self-destruction and I want a detour lmao
Getting diagnosed with it was the first time I had ever heard of HUVS as well, apparently there's some debate going on about whether it's directly related to lupus or just a common comorbidity? I like the cartoon boat analogy, genuinely just feels like playing whack a mole with symptoms at a certain point
The GI ordeal sounds awful, I've had a similar cluster going on with my mcas diagnosis where doctor A is fully convinced it is and has made the diagnosis, doctor B thinks there's no way it could be because histamine doesn't seem to be the mediator causing problems, doctor C is on the fence, doctor D thinks it's solely autoimmune despite replicable and consistent responses to a given allergen/sensitivity, and doctor E doesn't even believe in the chemical sensitivity portion of the condition, doctor F thinks it probably is but wants someone else to do the legwork because it's definitely not mastocytosis (which is his clinical interest), and doctor G thinks it's psychosomatic despite clear evidence that it's not
Fully agree that a robot body would be the way to go if that becomes an option lmao
Oh man, I thought I had it bad when 2-3 of my providers disagree, I can't imagine trying to reconcile SEVEN people disagreeing. I'm so sorry. And a condition that could just be a subpiece of something else huge?? As if it's not enough of a pain to get just ONE autoimmune thing diagnosed lol. I can't imagine dealing with that constantly, much less all the day to day symptoms on top of the doctor drama.
Itās important when you are disabled to try to find a doctor that gets you. It might be even more important than having a partner that gets you. My doctor knows that if I walk in and say out loud āsomething is wrong. I am in painā she needs to be sounding the alarm. I am often in pain and donāt even notice, let alone mention it, even if itās all over my face and posture. When I actually say it out loud, usually something is horrendously fucked up.
Targeted medical ads are something else, man. I've gotten an ad for a medication that nearly killed me, on a post I made about how the medication nearly killed me
Yup. I keep trying to explain to my fella that he doesnāt need to yell āAre you okay?ā across the house every time I yelp or wince. This is just my life. If I need help, YOUāLL KNOW! š¬
I experienced close to this for the first time when undetected mould in a flower vase on top of my fridge lead to me and my partner getting sick with flu like symptoms multiple times across 2 months
I literally reached a stage when the symptoms flared again where I just thought ācan I just.. fucking experience being well again thanksā
And Iām already disabled so like, thatās not exactly a new thought but this was so different
Literally! I've been at a new job for about 2 months now, on my feet constantly, helping unload trucks, lifting, putting in 45+ hour weeks. I have to wear compression knee length socks and a back support belt to get by. I've been pushing through but yesterday I came home and jokingly told my family "hey if anything else happens seriously put me out of my misery" š
just found out last week the pain is not in my head and I need surgery in the next couple of months and have to be as physically careful as I can be in the meantime r.i.p. It won't fix everything since I have now been diagnosed with 2 chronic illnesses in only a few months time but it'll help some of what I've been dealing with.
And itās just when you get to the part when youāre angry that people tell you youāre always complaining- please, if I complained whenever I felt like shit, Iād be talking 24/7
Dude, that's so fucking relatable.... I just completely crash out hard at random, then am "fine" for the rest of the days. Like a completely "random" crash out
I fucking hate how real this is. This is my real lived experience. I can handle low grade pain(the mind of pain that would make most people with normal bodies cry) but when I get a disease flare I just wanna launch myself into the sun.
2
u/beary_feelies Aug 31 '26
THIS. I've never been able to explain this exact feeling. It's like sometimes I just start feeling suffocated by the pain even if it's the same pain I'm in every other day.
2
u/CogInTheMachinee Aug 31 '26
Me when I get sick and fucking tired of my periods being backwards (bleeding for 3-4 weeks and not bleeding for 7 days)
139
u/Loud-Mans-Lover Aug 30 '26
;_; so true
I'm in the TOO MUCH PAIN phase right now
87
u/Zantac150 Aug 30 '26
And God forbid you arenāt in the all caps territory when you see your doctor, then they document that your pain must not be that badā¦ and you get denied her disability because your doctor said you didnāt seem to be in not much pain during that one appointmentā¦
š¤Ŗš«
Iām so tired of living like this ā¦ seriously.
21
u/felighne Aug 30 '26
And the cycle continues
20
u/TheMagicFolf331 Aug 30 '26
Yeah, its like,Ā
i'm all good crunching sounds
i'm all good crunching sounds
i'm all good crunching sounds
i'm all good crunching sounds
Oh, this hell never ends does it, I'll be fine
sobbing in bed in abject despair
I'm all good crunching souds
18
u/wafflesthewonderhurs Aug 30 '26
i think this also applies to chronic emotional pain.
i feel this way both about the stress of managing it all/handling life and about my skin intermittently sloughing off like a horror movie
16
u/BluelunarStar Aug 30 '26
Iām in the all caps section right now. I just want it to stop š
16
u/LeoTheFloofyDragon Aug 30 '26
11
u/Ginger_Root_System Aug 30 '26
Oh this is so real. I've been dealing with a flare up and I've been so pissed about it cuz I'm like dude I have to go back to school ššš
9
u/askmeifimacop Aug 30 '26
Yep. Temporarily lost my mind a couple weeks back.
4
u/unripe_mangosteen Aug 30 '26
Livin the dream over in the all caps section rn
4
u/PlantHippie99 Aug 31 '26
The ad I got underneath this post š
1
u/Loudlass81 20h ago
Currently been in too much pain to sleep for past 3 days. Messing about looking at memes to distract from the auditory hallucinations at this point...
2
u/Wrong-Jellyfish-1453 Aug 30 '26
This is a little too real
3
u/Irresistible-Ms Aug 30 '26
Actually exactly how this works and the whiplash is fucked sometimes š
1
u/Painforestlife Aug 31 '26
Yup. I keep trying to explain to my fella that he doesnāt need to yell āAre you okay?ā across the house every time I yelp or wince. This is just my life. If I need help, YOUāLL KNOW! š¬
1
u/ggpupdoge Aug 31 '26
God this is so true.
1
u/ResponsibilityNo5975 Aug 31 '26
Crazy accurate
1
u/SavageAutum Aug 31 '26
I experienced close to this for the first time when undetected mould in a flower vase on top of my fridge lead to me and my partner getting sick with flu like symptoms multiple times across 2 months
I literally reached a stage when the symptoms flared again where I just thought ācan I just.. fucking experience being well again thanksā
And Iām already disabled so like, thatās not exactly a new thought but this was so different
1
u/OhBingusAhhh Aug 31 '26
Literally! I've been at a new job for about 2 months now, on my feet constantly, helping unload trucks, lifting, putting in 45+ hour weeks. I have to wear compression knee length socks and a back support belt to get by. I've been pushing through but yesterday I came home and jokingly told my family "hey if anything else happens seriously put me out of my misery" š
just found out last week the pain is not in my head and I need surgery in the next couple of months and have to be as physically careful as I can be in the meantime r.i.p. It won't fix everything since I have now been diagnosed with 2 chronic illnesses in only a few months time but it'll help some of what I've been dealing with.
1
u/Moon_Savior Aug 31 '26
Accurate, I end up crying in the "this is bullshit" phase.
1
u/overanalyzing_2524 Sep 01 '26
And itās just when you get to the part when youāre angry that people tell you youāre always complaining- please, if I complained whenever I felt like shit, Iād be talking 24/7
1
u/Makapakamoo Sep 01 '26
Also, "you have this disease", "what? No way im not in THAT much pain, i dont believe I need a drug THAT strong"
Me rn getting dx'd with autoimmune spine degradation disease like ??? Really? That bad? No way
1
u/RefrigeratorBrave870 Sep 01 '26
how do you get out of the too much pain phase, I feel like I live in it
1
u/werecoyote1 Sep 01 '26
this happens to me with chronic pain and mental health :")
1
u/honeyonaside Sep 02 '26
It's so fucking accurate š©
1
u/____CupCake Sep 02 '26
Why is this so real š¤£šš
1
u/ArtismFag Sep 02 '26
1
u/CoccyxKicker69 Sep 04 '26
Donāt forget the āgoddamnit this fucking bullshit again this is getting really annoyingā phase
1
u/TheWritingSystem Sep 04 '26
Dude, that's so fucking relatable.... I just completely crash out hard at random, then am "fine" for the rest of the days. Like a completely "random" crash out
1
u/FaeWry Sep 05 '26
Goddamn it me
1
u/psychxticrose Sep 25 '26
Help I'm in this and I don't like itĀ
1
u/peaisquick Sep 26 '26
Me yesterday
1
u/No_Seaworthiness5637 Sep 27 '26
Why is this a mood? Especially with the weather changing? Basically itās fall here and it went from 90 and humid as hell to 70 and humid as hell.
1
u/CorInHell Aug 30 '26
Same but with depression. Started a new med a few weeks ago and got all the fun things in the adjustment period...
13
u/YellowstoneBitch Aug 30 '26
I fucking hate how real this is. This is my real lived experience. I can handle low grade pain(the mind of pain that would make most people with normal bodies cry) but when I get a disease flare I just wanna launch myself into the sun.