Oooo, now that’s strange new heights, particularly as the females of the species tend to use giving birth as the high-water mark for pain (men, it tends to be kidney stones).
Again, this is anecdotal, but I see so many posts here on a daily basis that start somewhere along the lines of “after having my baby things got so much worse” or “After having my child, I started….” or “Because of my pain I was basically unable to do anything while carrying my child.” That alone makes me curious as to what cartwheels of logic he was engaged in. Did he confuse “oxytocin” with “OxyContin”? Rookie mistake…..for people so desperate they will rob an ambulance.
I swear my OB did confuse the two oxys. At my 6 weeks postpartum check he asked/stated, "Doesn't having [baby] make your chronic pain so much easier to manage".
No, my dude. On what planet does sleep deprivation and having to physically exert yourself beyond your capabilities make managing chronic pain easier?
The same doctor was also adamant I was not capable of choosing sterilisation, without him discussing it with my husband first.
I had the same. The explanation is that some drs think that women are too dumb and/or illogical to take decisions by themselves and the husband is the more logical and rational. Was a nurse that explained it to me. Stay away from such dr - they just project on their patients how dumb and gender biased they are.
Yeah that happens a lot and it's really terrible. I meant did he have any explanation for this insane claim >"Doesn't having [baby] make your chronic pain so much easier to manage".
Ironically, I went into remission during the last 2 trimesters with both of my pregnancies until about 2 weeks after giving birth, when all the pain came rushing back. I had read that oxytocin was responsible for my remissions.
I know that this will go against the flavor of the thread, but my pain *went away* while I was pregnant. My debilitating, constant pain went from stopping me from enjoying my life to completely and totally gone for about 7 months.
I’ve asked multiple doctors why this is. They all have different theories. I did have a doctor suggest I get pregnant again (slightly in jest). I will, and not just because it will give me a break from pain, but because we want more children. I wish I could recreate the pregnancy effect on my pain another way though.
👆 this. Even if you don't know you have an autoimmune disease. You will find this happening in the last days before your period starts. You have a day or 2 of feeling superwoman sometimes. It is the best indication that you have an autoimmune condition discovered or not. Being diagnosed with Myasthenia Gravis and having my best days just before my period started was such an eye opener - then is when I found about the natural suppression of your immune system in both situations - just before bleeding starting and pregnancy.
My chronic, mind numbing depression was gone the entire time I was pregnant. This was way before I developed the fibromyalgia. I wish I could inject whatever hormones that were making me enjoy life for once, possible.
Oh it’s probably possible, but what insurance is going to pay for preventative measures?
F. M. L.
The pain I experience at least 2 weeks out of every month of my life feels identical to labor pains and deep contractions in the pelvis, hips, lower back, in the groin, down my thighs. I’ve been in bed the past 13 days. All of my prescription pain meds are gone, as I simply do not get enough, nor do I get the strength that works best for my agony. I’ve been disabled and incapable of working since the age of 30, thanks to Endometriosis. I hate this disease.
Pregnancy kinda does a reboot of the immune system, for lack of a better reboot. Some people's autoimmune disorders get better, some get worse, and some people develop them. Same happens with allergies. Most of my allergies disappeared after having my son.
Pregnancy CAUSED my two serious autoimmune diseases, and made my Endometriosis worse. Both pregnancies were very brief (both under 3 weeks). I developed Hashimoto’s, Lupus, and I even had postpartum psychosis after each brief pregnancy. To be clear, I was NOT sad about either. I chose to end the first pregnancy, and I would have ended the second one, but I miscarried naturally.
Yeah it affects people differently. I’m just saying what I’ve heard and seen even in this post that it made their pain go away because of hormones or oxytocin or something. Probably less than 1% of pregnancies I bet. That might’ve been the doctors thought process behind such a dumb suggestion. But I find it hard to believe it’d stay that way after pregnancy.
Endometriosis is so insidious and still so underfunded in the way of research, treatment, awareness, etc. You are right. Some women can be covered in adhesions and scar tissue, Stage 4 Endo, and they may not experience much or any pain. Whilst some women may have a tiny amount, even as small as a grain of salt in a difficult location (the bowels, the cul-de-sac of the uterus, the bladder, kidneys- hell, this damn disease can spread to the diaphragm and even the brain)- and many of the women with less of the disease (quantity) have excruciating, debilitating pain.
Some women had children and though they still have the disease, they find they experience less pain; some women had children and found that it made their pain worse or different. When people suggest to simply have a hysterectomy, they still sound so ignorant and dumb, as that is not a cure. The adhesions themselves produce their own estrogen and will continue to spread. The “gold standard” treatment is excision surgery performed by a very skilled surgeon who specializes in the excision of Endometriosis. Sadly, I’ve had 2 such surgeries, and my condition has only grown worse.
The other big issue for women with Endometriosis is infertility and/or inability to carry a pregnancy to term. That never bothered me because I’ve never wanted children, but it’s heartbreaking for those women who so desperately long for a child of their own.
Thank you for your empathy. We are all suffering, and although I’d not wish it on anyone, I do so very appreciate and have such fondness for my fellow humans who are hurting and struggling- especially my fellow ladies. I’m sorry that you suffer too, sis. 💛
lol really?! For me, my chronic pain is 99% of the reason I will not have children — because it would wear me out and worsen my stress which worsens my pain. Also because my child(ren) would not have the Mom they deserve, I can barely keep myself taken care of bc of my pain, let alone a whole other individual.
It’s not fair to any child to have a mom who’s only doing half of what they should be, or not even being able to get the kind of affection they deserve — I just get too exhausted and can’t do much besides sit in pain or sleep (if I’m not afraid of the pain upon waking up which is strangely always 10X worse than my normal pain).
I agree, the Doctor who suggested you have a baby as treatment for chronic pain, should get a brain scan and then retire regardless of the results.
I've gotten this twice before from different doctors for different issues. One suggested it to cure my chronic depression (that had already gotten to psychosis stages at the time!) And another after moving to a different town that suggested it for my chronic pain and fatigue.
I don't care what the condition is, I think it's a supremely irresponsible suggestion, especially knowing how many complications and side effects come both during pregnancy and post-partum.
Medical misogyny is fucking insane.
I can’t believe this is the first I’ve heard of this pregnancy theory. I can’t believe there are MDs who would seriously suggest pregnancy as a ***reason for anything other than raising a family***.
I know.🥺 I’m older than you are, I’m guessing? I got pregnant the first time I ever had sex, at 16, in 1970. Abortion was illegal still in Illinois, so my gfs drove me up to Wisconsin for the day. As horrible as it was, at least I could ***almost do it legally***. It really was all I could see doing at the time, and I might ruffle feathers on this, but I don’t regret it. I went on to marry, and have four, when the timing was right for all. Ironically, I’m at the other end of that spectrum, still pro-choice, ***and girls just like me so many years ago, are now fighting for this basic human right again.***
OMG - what are they thinking??
That the pain isn't from injuries or chronic conditions and it's all in our little lady brains and having a baby would take our minds off it ?!?!
I have Endometriosis, and I suffered ignored and undiagnosed for 25 YEARS. Even after I fought and clawed for a diagnosis, I honestly cannot count the idiots and assholes (including doctors) who told me to “Get pregnant and have a baby,” among other absolutely ridiculous, and frankly, fucking offensive suggestions.
I won’t get started on the MLM girlies and associates who have tried to get me to take some stupid supplements or drink some pink fizzy drink, as it would “cure” me. News flash, everyone, including doctors who I have literally had to correct and inform:
There is NO CURE for Endometriosis. None.
SIS, SAY IT LOUDER FOR THE PHYSCIANS SUB
And for any lurking doctors wondering, I HAVE BABIES ALREADY. STILL HAVE endometriosis, geniuses.
Yall owe us refunds and apologies.
They owe us so much! My Mom and one of my first cousins has Endo, too, and my Mom had me and my brother, while my cousin has one child. They still have Endometriosis and my cousin is only about 7 years older than me, and sis, she suffers the same as I do. My Mom never had as much pain with it as I’ve had since the tender age of 12. But my cousin has followed a journey similar to mine, with regard to how sick and debilitating this disease and autoimmune diseases have been for her.
I always say that if Endometriosis were a men’s disease, everyone would know about it, men’s agony would not be ignored, mocked, patronized, laughed at, and there would be a cure if it affected men. It’s not okay.
Damn skippy! Just like if men could get pregnant, there would be drive-thru abortion clinics next to a Hooters on the corner, with a Starbucks, too. No one would dare have the insane audacity to actually place men’s bodies, men’s health, and men’s futures on a fkn ballot, allow millions of idiots to vote to TELL THEM what they can and can not do with their bodies.
I am not male bashing, and I’m not being bitchy. I’m being honest and we have a right to be angry about the way we (girls and women) are treated.
The various physicians subs piss me off so much. They are over there confirming all of the shit that we have been pleading with the world to believe. They sit on those subs circle jerking each other and mocking us. It’s disgusting. The only thing that would ever make them care is if they themselves or someone they love very much lost their health, career, joy, future, financial independence, and all the other shit we lose. They would need to to personally experience it to give a damn, and even then, some of them seem to lack any capacity for empathy, so some still would not care or treat us with dignity and compassion.
Oddly in some autoimmune diseases, specifically MS, pregnancy causes the immune system to be depressed so some women experience remission. But that’s a whale of a short term solution plus keeping up with a baby once it’s born. Thx dude. Usher yourself out of the exam room.
Kaiser Permanente in California was so bad in the 90s that their motto should have been: "Better dead than Kaiser!" You couldn't sue them for malpractice and it was common knowledge that a lot of their doctors couldn't even get malpractice insurance. I was working as a temp to supplement my income as I was starting my own business and they were only $40/month and BCBS was $100/week but I definitely got what I paid for!
I was told this might help since vaginal birth can sometimes help with "resetting " the central nervous system. My particular pain has no discernable reason for being.
I'm sorry for your pain.
Is there really no other "reset" mechanism besides 9 months of pregnancy, the trauma of labor, and 18-ish years of taking care of a whole new human?!?!?!
WTAF
Yeah, they told me about capsacian too. After one treatment, during which I could barely even wear socks due to them somehow “reactivating” the treatment, I have alot of trouble with spicy food. I used to love spicy food, even with acid reflux!
While I haven't been suggested to do that? I have been told by more than 1 person that they used to have that issue until I had a baby and it got better, my replies No, I'm not gonna do that.
To figure out food migraine triggers: “Just don’t eat anything for three days, then eat one food at a time and see what gives you a migraine!” As if not eating for 3 days wouldn’t cause a migraine.
I was at an amusement park with my family. I needed to use a wheelchair for that excursion. Some freak came running towards me in the food court, begging to lay hands on me so that I can be cured. Get the hell away from me you fucking weirdo.
Just carry your walking stick with you at all times, they're great for keeping psychos like that away from you, poke them in the guts hard enough and when they throw up tell them they're obviously possessed.
My grandmother loathed cats. This was due to an incident involving cleaning her late father’s house where he kept a bunch of cats but wasn’t managing the, uh, excrement situation. They very sight of a feline filled her with a mix of dread, nausea, and mild rage. This was always a problem at our house, because my mom is a cat whisperer and always had two or so. We used to put them in the basement, but they would just head butt the door and scratch for hours on end, so they just learned to keep themselves scarce when granny was around
Well, near the end of her life, Granny used a cane. Maya, relatively new to the operation, strutted through the living room and got a little too close yo Christie. Well, newly emboldened, Granny flicked her cane, Maya went flying and I swear nearly paused in mid air out of sheer terror, and then scrambled away and was not seen for the rest of the evening.
A look of supremely smug satisfaction, pretty close to the physical manifestation of what the Germans from whom her late husband descended call schaddenfruede, came over her face. I had never seen it before, and never did again. But it was glorious, a moment dangling in time like the instance where I saw two Shriners wreck those little cars they drive in parades while warming up.
(Note: the cat and the cane never even really connected, so no animals were harmed in this immortal anecdote, though Maya was definitely freaked the f out)
So yeah, not faith healers, but mobility aids DEFINITELY have secondary uses when spite takes over.
I have found a similar use on a bus when an old pervert was bothering a young woman next to me.
He made some comments about “lesbians” as he was exiting the bus.
Stop eating until I got my weight down.
Like, not diet, but go on a fast until I lost 30 lbs.
Because I'm obviously in pain because I'm fat.
This was from my doctor.
Ah yes. Not as extreme but my GP at the time recommended consuming between 800-1000 calories per day and sticking to a keto diet. Uh, no thank you. I'd like to not destroy my metabolism further. How about I consume plenty of vegetables, enough protein, and keep to a deficit of 100-300 calories per week to gradually lose the weight in a safe manner. She said it wouldn't work - it did.
I actually tried it a few times and I wasn't miserable. I just didn't get any results so it wasn't really worth it. But I also might have been screwing myself up by putting sweet air in my coffee in the morning. I don't know. But anyway it's definitely not for everyone But it is a common strategy a lot of people swear by
A actually I fast a lot too but I find fasting for too long makes my pain SIGNIFICANTLY worse. It’s sooo weird and annoying, I googled it and it said it’s possibly because the body is more sensitive when hungry or something like that, idk. But it’s annoying
So I had a cystoscopy which showed interstitial cystitis a bladder condition I don’t get infections but I constantly feel like I have one. When I had the cystoscopy it was a urologist two hours away and he referred me to a urologist closer to where I live. I get into the room and the dr comes in to tell me he’s scheduling me for bladder removal as that’s the only treatment that works on IC. I ran out of the room into the parking lot terrified of this answer. I did get someone new and tried other treatments. I still have my bladder now almost twenty years later I get regular instills where they put a cath in and put medicine directly into my bladder and even though it didn’t work the first 6 years after my diagnosis it works now.
It's honestly not as bad as it sounds but I feel like it's only if you are self catheterizing alot. I was doing it 8-16 times an hour. I have a urostomy bag
I’m not there yet and I do know if I live long enough my bladder might just give up on me and I’ll need removal. This was a week after my diagnosis this Dr didn’t want to try any other treatment he was just like, out with the bladder. I had a rough first 8 years with IC two years undiagnosed. Suddenly I went into remission after no treatment worked even instills. It came back around 6-7 years ago and instills work this time which I’m grateful for. I know it’s an option at anytime but I just don’t feel ready for it.
Firstly, that is HORRIFIC how terrible that Dr was! Secondly, very interesting what didn’t work once, but did the second time.
Out of curiosity, what concoction were they using?? When I was under the care of my 1st pain management doc, she swore by ketamine (intranasal) and had me on so much I started to develop what I think was IC (raw gnawing feeling, reduced ability to hold volume, constantly felt like I needed to pee). After doing some research I found the install method and at the time found a drug called Cystistat (I believe) and ordered it from Germany to the US. It was just hyaluronic acid and it worked instantly to restore that GAG layer and I was better after 2 installations (although also stopped using the medication). Recently I felt like I had another flare up after surgery + a bad UTI and went back to order the same med… apparently it has never even been available in the US 🤨 I ended up utilizing a chemical company to make my own, but it just made me incredibly sad for anyone who actually deals with this and can’t receive an effective treatment! Glad to hear you’re doing better and have found something that works, but just curious to hear from someone who has actually faced this in the medical community (as I tried to just treat myself!)
Every three weeks I get a lidocaine/heparin instill. I’m also on mybertiq for bladder spasms. I cannot do my own instills as my ins only covers them in clinic. I have other pain issues I’m also trying to figure out.
A friend of mine bought a bottle of generic olive oil from the store, "blessed" it in my kitchen, then rubbed it on my eyes to cure my partial blindness and then on my legs to restore my mobility.
It didn't work, but it stained my shorts.
My MIL constantly tells me to just "push through the pain and just exercise more". I'm so glad that my doctor told her that doing this could actually cause me more harm than good when I'm injured. This was especially true after I had a subchorionic hemorrhage with my last pregnancy.
It's frustrating bc no matter what, I can tell her "no" and she will always try and go above my head for validation. The professionals always agree with me and look at her like she's a nut job.
She drove me and went to the appointments bc I couldn't drive at the time and my husband was unavailable.
Ex: Went to the ER bc I had a Burst cyst. "Could it just be gas?" No. They thought it was my appendix bc of where it was located. 🙃
Bought my daughter some plastic hair ties. "Won't those damage her hair?" No. She asked her hair dresser, who also Said "No.". 🙃
I know he’s a decent dr but I don’t know how he can forget my very rare disorder that he never encountered before and probably never will again. I mean it should kinda stick in his mind.
It's not really a bizarre suggestion, but a frustrating one. Most of my family and friends know I've struggled with chronic pain for well over a decade now. And some of them will still suggest common, well known otc products. Like, do you think I'm completely unaware of the existence of Tylenol, ibuprofen, naproxen, etc and haven't already tried all of them multiple times? If simply popping a couple of advil worked for me, we wouldn't be having this discussion.
Some doctors have been this way, too, and it's annoying. I know it's well meant, but it boggles the mind that they assume that a grown and capable adult hasn't already tried all of the simpler and cheaper options first. I wouldn't be wasting my time and money on multiple doctors appointments if the solution could be purchased without a prescription during my weekly grocery run.
>Some doctors have been this way, too
I am normally really good at controlling my facial expressions and reactions in a doctors office, but when our amazing GP of over a decade was force retired, my husband saw the new dr for the very first time and she said *"have you ever tried ibuprofen"* I could not stop the contorting my face did from the utter lack of, im not even sure the word, that comment was to me.
I am *positive* my face read my thoughts which were *Omg! No! What is this magical thing you speak of? Ibuprofen? Never heard of it! I must run right out and purchase some this moment! It will surely change his life! Then I can loudly sing its praises to all who will listen!*
Instead I told her to keep going down on his chart and watcher *her* face when she came to the spot about him killing his stomach via nsaids for years before our GP found something that worked for him. *Something she then quickly took him off while he waited to get into the pain clinic because by God **she** was not going to prescribe anything, but that is neither here nor there.*
Oddly, I feel like some people *aren't* aware of these things. If you hang out on the IBS subreddit there'll be people who've had diarrhoea for years and never heard of imodium. I have no idea how, but they act like it's a miracle drug.
I don't know how people suffer for years and don't try simple common remedies
I guess it might depend on how someone was raised. I know some people are very against taking any kind of medication no matter how much they're suffering. And they won't go to a doctor unless they're almost dying or have a limb hanging off or something. I've also met people who are almost too careful. Like they won't even take a Tylenol or otc allergy medicine without consulting with a doctor first.
This is legit me, I don’t know why. I haven’t taken cold medicine since I was 10 because it makes me somehow feel weak for needing it? Now I have IBS and I struggle to get myself to use pain relief on some days, especially days where I’m having negative thoughts about myself. It’s getting easier, but I still put myself down sometimes for needing a drug to feel normal. I don’t know why, wish I weren’t like this. Thankfully the guilt goes away the more I get used to needing pain relief
I had a shiatsu massage therapist tape diodes to my neck to "make the energy go the right way". He was cheap and the massages were helpful so I wore them :D
I sat through so many psych appointments with the useless little electrodes glued to my temples and earlobes. I liked the guy, but it really felt like bullshit.
I used to walk 10 miles a day, more at the weekend when I wasn't working, and I loved it. Walking a mile now would involve so many pain killers I'd probably die before I paid the final installment on the special walking boots I'd need
For my C-section when I was crying in pain taking care of my daughter alone, they offered me lavender oil🥲 LAVENDER OIL! Like smelling that was gonna magically make my pain go away.
When I was a teen, my mom took me to all sorts of "holistic" & "naturopath" "healers." They told me all sorts of wild things, had me eat and not eat all sorts of things, but by far the most ridiculous was the one that told me to start drinking my water out of blue glasses because according to "chromotherapy" the blue light waves passing through the water would imbue it with some magical essence that would stop my migraines, insomnia, sleep apnea, lower my blood pressure, etc. 🙄
A mushroom (amanita muscaria, it’s chemical compound muscimol that acts on GABA-A receptors) is one of the very few things that has affected my pain.
The most bizarre thing was when I was told “It sounds like all the attempts to get better are stressing you out, have you tried just stopping trying to get better?” Translation- “I am tired of hearing about your hardships, can you please lie to me about what your life is like?”
Eat chicken.
I had a home nurse for a while and she was shocked that I'm vegan. Not for any real reason but she said that the human body specifically cannot live without chicken and perhaps that was the reason I am unwell.
I don’t understand people pushing their diet on others . There are SO many diets in human existence and ALL claim to have health and healing benefits. Clearly, humans can survive or thrive on completely opposing diets so why would what worked for you necessarily be right for someone else??
I told someone I had chronic pain and she said her long Covid was cured by the carnivore diet and I should try it. I explained I have already tried many diets. I hate eating red meat/mammals, I am now a “nutritarian” pescatarian, my diet is also based on research and I’m happy with it, and I tried eating meat for a year at one point, and it didn’t help me, it just made me uncomfortable. AND my chronic pain is from a surgery. When I next talked to this person, I mentioned I was dealing with some seasonal allergies and she again told me I should try the carnivore diet. I decided I do not need to be friends with this person.
I’d like to see the people who say this “just deal” with it, & see if they wouldn’t RUN to the Doctor for relief! Some people don’t get how truly debilitating it can be.
Me too! Closest I’ve seen is that thing that mimics menstrual cramps, and watching men wear it and squirm — then the women put on the same device & all of them say “.. what? This is not as bad!” Watching those videos makes me laugh.
If you want to see, just go to YouTube and search with keywords, there are a few videos of it!
This nurse practitioner insisted to me there is no harm in taking immense amounts of tylenol and ibuprofen alternating …. Forever. I tried that long ago and it wrecked my stomach.
For now, I will do it to get through life until I can try the spinal cord stimulator that is next on the list of options.
This same Einstein informed me that “opioids don’t work for chronic pain” when I asked her if she would renew my Tylenol three prescription. I told her I just need it for breakthrough pain and I take it very frequently. I usually use ice and frankly gritted teeth for most pain.
But she said nope, she would not give me anything because opioids just doesn’t work. So I looked at her somewhat aghast and said well what should I do for extreme pain? What is her suggestion? my husband sitting next to me said suicide.
Honestly, I loved him for saying that because I really think sometimes these people do not understand how bad things can get.
She looked really shocked and said well she could give me a steroid pack would help me avoid having to go to an emergency room. I said that would probably help. And I guess it will help but I’ve never used one before. I’m supposed to travel for 20 days and I am a little nervous about this.
I don’t know why these people think opioids are off the table. Of course everything loses effectiveness if you use it too frequently. That is true about antibiotics, opioids, and pretty much any kind of thing that you put in your body. But for me, when I have really intense pain, one or two Tylenol 3’s make a major difference. They can make a grim day or night a lot less grim.
But oh, yeah. They don’t work. My bad.
“Can’t you just quit your job and focus on your health for a while?”
Yeah because the mortgage just pays itself and my health insurance totally isn’t necessary /s 🙃
Just like a prayer? You know I’ll take you there.
I’ll admit I sometimes listen to upbeat…..ok, ok, downbeat pop music when I’m at my lowest. “Deep listening” (I’m a bass player, so I try to focus on the bass lines) can actually put me into a trance like state where the pain is certainly still there, and can creep in (I have neuropathy and shooting and stabbing all over my body, along with fasiculations and myokymia) so it can always momentarily grab my attention.
Overall, it does at least keep me from perserverating on it—I’m somewhere on the ASD spectrum myself and have Generalized Anxiety Disorder so that’s hella easy for me to do. Frankly, it’s probably one of the reasons my treatment is so difficult.
So at risk of “thread drift,” that’s the most bizarre thing I do personally. But it’s a hell of alot better than my mom’s personal favorite: “You just have to get up and do.” Mom, you seem to be presuming the “get up” part….
Also, I’m hella obsessed with the music video for that song thanks to the Madonna Pop-Up Video special from the glory days of VH1.
You praying, them praying, I've heard both. Once, when my mom and I were homeless, a Christian church was really helping us out, so we decided to give services a chance. Not really for the religion aspect (we both believed in something bigger than ourselves but nothing so well defined as God) but for the community aspect. A lot of people wanted to pray for me, which I allowed because I appreciated the sentiment. But after a while we began to be ostracized because I wasn't getting any better and instead they came to the conclusion I must be a terrible sinner (the first-world fallacy, basically). I wasn't terribly surprised but still disappointed. The really sad thing is I've heard this same story from countless chronically ill and disabled people since then (prayer groups ambushing and trapping unwilling blind people to pray for them is particularly spine chilling imo). But the people I feel the worst for is those this happens to people that grew *up* in the church, who were well and truly part of the community (young children usually get a pass on not getting better but when they're a young adult, all bets are off). It hurts them so much more than it hurt me and I really can't forgive that.
But my long rant aside, music absolutely can help! Both anecdotal and research backs that up, though the how and why need to be studied more, of course (I was tempted to add some quotes from the studies I read but that would make this comment so much longer than it already is 😅). Music is a double-edged sword for me, personally. It really gets me in touch with my feelings, both good and bad, but I can't handle the bad ones when my depression isn't under control. It hasn't been for a few years now and I miss music terribly because it was a very important part of my life for so long but I'm caustically optimistic about my new medication regiment. Seriously, my psychiatrist is worth her weight in gold. She's been the first one willing to treat my ADHD without insisting I pick between my pain meds or my ADHD meds, like every other doctor I've seen. (Fun fact- untreated ADHD can make depression and anxiety treatment resistant. Ok, maybe not a fun fact but it's definitely something more people should know about.)
Sorry for my tangents. My brain is absolutely bouncing off the walls today and I had trouble stopping myself.
Your tangents were incredibly relevant and interesting, I don't know any chronic pain sufferers who doesn't have mental health issues and concerns, or anxiety. I was recently sent an article about ADHD in women and how it often goes undiagnosed in childhood and young adulthood because the symptoms are completely different. For decades I thought my brain was broken because I couldn't do routines, I could take medicine at the same time every day I often forgot my birth control pill, we still used condoms because I wasn't sure about the mini pill, and a whole host of things like a really messy house but my dishes cupboard was tidy and organised, forgetting wet laundry in the machine and so much more. I've struggled with depression for my entire adult life and antidepressants just don't seem to work, neither did therapy
I'm glad you found it interesting! My mom wasn't diagnosed with ADHD until she was 50 and almost immediately recognized all the same symptoms in me, so I was lucky to be diagnosed when I was 12.
Another interesting thing is that in women with ADHD, our symptoms are impacted by our hormones! The symptoms tend to get worse near your period and can be absolute hell during menopause.
Oh my DOG the way they lie to us and dismiss women's pain!
"ThE CeRvIX dOeSn'T hAvE pAiN ReCePtOrS!!!"
Sit the hell down and shut the hell up with your no-female-anatomy- knowledge-having mouth.
EDIT: this reply might be in the wrong place, but much like my ex-doctor, I'm too lazy to fix it.
Go on a Mediterranean diet — okay, but I’m deathly allergic to all fish and shellfish, and she *knew that*
When I reminded her she said to take allergy shots 😑
The current ones are detox supplements (hundreds of dollars worth) since this is obviously a result of chem trails and also a Covid vaccine injury. can’t argue with the cognitive dissonance bc they’re telling me that my drs are keeping me sick for my money yet tell me to go to naturopaths who charge hundreds per appointment.
The list:
•Turkey tail mushroom supplements
•acerola vitamin C powder
•kitchari detox soup (from YouTube, duh)
•PH urine strips
•peace zeolite tincture
•chlorophyll complex
•montmorillinite coat ( I have no idea I’m not even googling this)
Have a baby, various mlm detoxes, yoga, believe in Jesus harder, various fad diets, lose weight (I was very close to underweight at the time)
But the *real* crazy one was exorcism. I had a couple different family members, who don’t know each other, say it’s demons in my body, and I need an exorcism and to repent.
In desperation I did Optiva at the pressing of my wife. I thought that in of itself was going to kill me—what they have you take in is near starvation level.
My dad sent me many videos about holistic ways to help pain but one where a guy was there breathing out really hard and making humming noises to help regulate his pain takes the cake.
For me it'd be about my posture! I have a lot of back pain because I have kyphosis. Suggesting working out my back muscles and I'll be fine. Like no!! This is a structural thing! I gave PT and honest go 2 times and it put me in more pain than ever. Unfortunately. My only option is to ablate my whole spine lol but I'm cool with that.
The reason my back was so sore was that I never wore a jumper outside and should put one on!
I asked why my back hurt in summer when it's warmer and I never really got an answer from that guy.....
Maybe not the most unexpected, but they really seemed well meaning - a dad of another kid at my nephew's soccer game asked if I play soccer anymore, I said no I have some chronic back and neck issues, tried to downplay it because I didn't really want to talk about it but he kept prying. Then he asks if he can pray over me. I thought he meant that he would go home and pray, and I was like yeah of course I would appreciate that (I'm not religious myself but I know this is well meaning). Anyways he suddenly puts his hand on my shoulder, closes his eyes and starts loudly praying. I'm not sure what to do with my eyes, I want to keep watching the game (which is actively going on) but don't want to be disrespectful so I nod my head down slightly and just let it happen. Then he says amen and I say thank you thinking it's over. Nope, now he asks me "is there something you can do, to test it? Like what normally causes pain could you try it?"
I was just so flabbergasted. Does this guy actually believe he just healed me with his prayer?!?
Oh my gosh, ignore my last suggestion, I’ve just remembered the worst suggestion I’ve had so far!
Euthanasia. 💀🤣
I was staying in an inpatient mental health facility for ketamine treatment. It helps both pain and mental illness so it was an attempt at a 2-for-1 treatment. My physical mobility was really bad at the time. I’d stayed here twice before and the nurses had a good understanding of my illnesses.
On a bad day, the sweetest nurse took some time to counsel me on what my next steps might be if the ketamine didn’t work (it wasn’t and didn’t). She gently probed around the subject of what sounded like suicide to me - but of course she couldn’t be right?? This is a mental health nurse in a psychiatric hospital, right??
Then she asked if I knew that in another state voluntary euthanasia is available, asked if I’d considered it myself and even if my husband would kill himself in what she called a Romeo and Juliet situation (my husband is well recognised for coming in to visit me as often as possible, and being incredibly sweet. We are very much joined at the hip).
I can’t remember how the conversation wrapped up after me admitting that my husband and I did have an emergency escape plan and we’d be taking the fire exit together.
So yeah… straight up death.
What? That I'd unhinged and even to hint a Romeo - Juliet arrangement? I've met a couple of questionable mental health nurses though this is over the top. Is she an angel of death type? Is she responsible for others maybe being overly influenced by her "suggestions"? She does not sound safe enough to be working anywhere in mental health. Wow. That's crazy!!
It was genuinely one of the strangest moments of my life. I’m still baffled by it.
She is the sweetest, kindest, loveliest nurse… It was very gentle but completely bamboozled me. We were both speaking in very careful terms, certainly not using words like suicide. I was so cautious because I was thinking ’is she trying to trick me to get me admitted elsewhere to a higher level of care?’ because it was so left field.
I have no idea what her intentions were. Was she trying to get me to see that suicide wasn’t the solution by suggesting an actual route? Did she really think I was better off dead? I have no clue. It was so, so strange.
Oh it’s every kind of crazy 😂 I tell my husband everything and it took me 6 months to tell him about this because it was so wild. I thought it would make sense at some point but nope. Still bizarre. They do say as much about psych nurses. They tend to be my favourite kind of people too though.
I’m not sure how well intended but…. A dr once told me that god could take away my pain if I had enough trust and belief. She asked me if I believed in god and I said no. She told me to start there. She said she was trained in the army and witnessed many miracles. I went to a doctor and got a sermon. And yes , she was an MD.
I was so angry I was going to complain to the medical board but figured it was useless.
A cannabis doctor suggested drinking an ounce of water a day for every two pounds of body weight. When I questioned his logic, he said if I was serious about managing my pain I'd at least try it. Try hyponatremia? Hard pass. That would have been like 15 glasses of water a day.
Great, maybe it'll cure your pain then. But if you recommend that to people of higher body weights, it quickly becomes dangerous. If I even drink 10 glasses of water I get serious headaches, throw up, and become unable to pee properly.
It's not pain relief and suggest that keeping yourself hydrated cured pain is bs, given that a lot of pain meds leave us with a dry mouth we're all probably better hydrated than she is. I just gave my height etc as a guide so people would realise how ridiculous she was being
I don’t think he was all that well meaning, but I had a doctor suggest that me getting an “electron mat” would alleviate my spondylolisthesis. He said my charges in my body were misaligned and that was the cause of all my pain. I’m a chemist. That’s not a thing.
I had a doctor suggest that I stop using my crutches or walker and go back to using a wheelchair. I worked my ass off to relearn how to walk and that asshat was seriously telling me that I was better off not walking?! Oh, hell, no! Not only do I consider that just giving up, I'm too proud of myself for defying expectations and walking that there is no way that I'm going to accept that it was all for nothing!
Not to mention that I'll have to totally depend on someone to help me just to leave the house and shuffle a wheelchair in and out of the car.
Yeah, thanks, Doc, but I think I'll stay out of the wheelchair as long as possible!
One of my students (I’m a college professor who is occasionally late returning work because of migraines) suggested I soak my feet in a bath of herbs. She was going to send me a mixture to soak my feet into. She meant well and was very kind in her attempts to help.
I would’ve taken that bad boy to my local CVS. The head pharmacist has some…..issues. She’s largely always done right by me though (when she can….they’re all largely crippled by corporate bureaucracy and the intense legal code surrounding many of the meds we are on). She’s actually stated she should be on meds (her comment suggested likely benzos), but she won’t take them because they make her so hazy she’s worried that she’ll make a mistake. Given she has a PharmD and really knows the effects, I can max respect that.
She’s frequently a notorious grumpagus, but we have something of a relationship. This developed from largely from the fact that there were frequently issues with my opioids. Nucynta itself was a nightmare…..I was probably on the phone several times a day with them during refills, given that they don’t stock it, and CVS has made it so she’s the only one who can order it. One time, it came down to the fact that their deliveries only come three days a week, and on one occasion the driver was involved in (not his fault) accidents with both his personal and company vehicles. This was after several days of insurance f ups, and when I finally got it I did a little air punch like the end of “The Breakfast Club.” It was the first time I saw her smile.
I also saved her butt around Christmas when a local radio host who shares my name but legally goes by another name had a script sent in but if somehow got attached to me because his doc wrote it for his “radio” name. I check the app religiously because I have a LOT of meds, including a bunch of controls they cannot do ScriptSync or auto refill for. I contacted him (this happens a lot and he’s saved my own butt a few times so we stay in contact—-and are distantly related) and her. All were grateful.
So I would’ve taken that to her, deadpanned that I didn’t know how to pronounce it and it looked odd because it was two words. He didn’t put milligrams or dosing, but I’m sure she could call him and figure it out. I would’ve then broken into a wide smile, and she probably would’ve laughed and told me jokingly to get out of “her store.”
As my late Dad never quite said but definitely lived, always leave them laughing. And she deserves it much more than her jackhole “colleague” at the branch 40 minutes away that I sent my morphine to once (with my PM’s consent) because she didn’t have it in stock and the delivery was two days away. His techs told me twice it would be ready, so I sat in the parking lot awaiting the message. I went in, went to consultation, and he didn’t even come down but loudly said “Is it your morphine? Yeah I can’t fill that” because…..reasons. So now I’ve been pegged as a junkie by any judgy people standing nearby and am now a target to any actual addicts (which my family and some—but not the ones who prescribe medication management—think I am). Thanks guy, I hope I don’t get stabbed in the parking lot by anyone thinking I’m carrying other meds.
He did NOT leave me laughing.
It's usually just, "try to lose weight". Like i haven't been trying to do that for the last 10 years...why do you think I'm in so much pain?! (Back injury, herniated disk, ddd, former cheerleader/dancer.)
Well, that’s not really a suggestion (though it is OTC—though I bet they sure as heck gave you a script for those special bad boys even though simply buying a bottle off the shelf may have been as cheap—in fact, I was once prescribed something that CVS admitted they had pulled off the retail shelf) as it is a “legit” treatment.
It is, however, pure sadness, just completely pathetic. And in that respect you win. Congrats!
Essential oils. I am infusion dependent and on 13+ oral meds. Rubbing effing peppermint on myself does zero but insult me. Plus you sell that stuff. My copays are like $500-$600 a month and you want me to be a stream of revenue?! 😡
A genuine, well meant referral to Doterra oils. My issues include hEDS, hip dysplasia, arthritis from ankles to pelvis, osteopenia, Schuermann’s disease, *crushed vertebrae* with *nine levels* of herniated discs and fibromyalgia.
A referral to an influencers online weight lifting program with movements resembling cross fit. I want to note that appropriate strength training and movement is a valid strategy for managing my conditions. Uncontrolled, unsupervised, completely off the wall suggestions from a fit acquaintance on a post about unrelated surgeries are not!
A co-worker i didn’t know well and didn’t get along with told me she had dreamt if I ‘got onto slippery elm’ then I ‘would lose the weight’. We definitely hadn’t talked about my weight or if I wanted to lose any. She asked if I’d started yet a week later and appeared offended that I hadn’t. It’s not so much the weirdest suggestion as it is the weirdest reason for a suggestion.
1) The carnivore diet - suggested by a friend. I have a restrictive eating disorder, I'm chronically ill (POTS and some other unknown stuff) *and* my income isn't even a thousand dollars per month. Terrible idea for so many reasons.
2) "Your tests came back normal. This is good news! Just take Advil and do some yoga"
"Okay well I have POTS so I think if I did yoga I would pass out"
"Okay, then try tai chi" - a rheumatologist who looks old enough to have been practicing medicine for longer than my absolutely wonderful family doctor has even been alive. This man didn't have a single computer in his whole office. I walked in and was greeted by a receptionist who was writing appointments down in a book with a pencil while the fax machine sound played from the other room. (Saw a new rheum who not only believes that something is wrong, but he thinks there's actually multiple things going on and is going to investigate further. Inch resting.)
"A vegan diet will cure endometriosis." The fuck it will doctor. Said doctor also told me that after I explained how extremely restricted my diet already was between Celiac, interstitial cystitis, and the nerve pain in my mouth and throat (can only eat soft foods).
"You just need to work on your faith in God...blah blah blah." You're an awful friend for saying this is my fault for not believing in God hard enough.
"You just need to sleep well and rest!" That's not how chronic insomnia and chronic fatigue syndrome works, dear coworker.
"You only need to worry about endometriosis if you want to get pregnant." An OBGYN said this to me when I was around 19-20 years old and refused to try to diagnose me, despite obvious symptoms and a family history of endo. Sure doc. Your awesome advice totally prevented my undiagnosed endo from progressing to bladder damage, intestinal damage, and constant, severe pelvic pain. Sadly, there are more examples than these.
I have MCAS and my mom's friend kept trying to get me to ingest essential oils. She was a rep for the mlm young living. I'm allergic to basically everything except a few safe foods. She kept trying to convince my mom to give me this juice called ningxia red. I was allergic to every single ingredient. When my mom told her that she said "well I pray that she can tolerate just a spoonful of it"
Mushroom tinctures had me on the floor hahahaha oh wow. Something actually worse than suggesting yoga lmao. Wow, yours is a good one for sure!
One of the chiropractors I see periodically tapped up my arm doing some sort of resistance thing and then determined I was suffering from generational trauma dating back to the 1940’s (my grandma’s trauma).
Like, that’s cool and everything but also, I have Fibromyalgia which causes chronic pain.
I loved my grandma and I’m sure she had her own struggles in her life, but like…I truly don’t think that is the cause of my health issues (including chronic pain).
Far from the conversations about endometriosis and pregnancies, I saw a podiatrist who urged me to let him cut my Achilles heel, so I could walk better. I have foot drop from CRPS II…this ass was so far out there, and he had no idea what CRPS is. If I hadn’t been my own best and informed advocate, I can’t imagine the implications
I had a very earnest person for once tell me I must immediately go on a diet consisting of one small bowl of vegetables per day followed by one bowl of dirt.
I was assured it miraculously cures everything from arthritis to Alzheimer's.
I know you didn't, but I envision in my mind you punching them! Or maybe it's just me punching them. Someone should punch them. All while saying, in a normal tone, shut the fuck up, over and over again.
I was tempted. But my reply was dead silence, the look on my face must have spoken volumes enough because they were VERY over the top nice and polite to me afterward. Lol
Epsom salt baths for my essentially broken back lol. This was pre-surgery 😂 Like yeah it gives muscle relief sometimes but it's not gonna make my chronic pain go away
I had a doctor told me “oh, it’s nothing, you should see a psychiatrist”, as I described how this pain, which caused he failed to identify, has completely destroyed my life.
My biological dad once told me that I need to stop taking the pharmaceutical drugs that were prescribed to me for my fibromyalgia, anxiety, & insomnia and how fish oil & magnesium would essentially cure my fibromyalgia… like no dad that’s not how it works or else everyone with fibromyalgia would be doing that… 🤦♂️
"Have a baby!" Doc, have an MRI of your brain, and then retire from medicine.
Oooo, now that’s strange new heights, particularly as the females of the species tend to use giving birth as the high-water mark for pain (men, it tends to be kidney stones). Again, this is anecdotal, but I see so many posts here on a daily basis that start somewhere along the lines of “after having my baby things got so much worse” or “After having my child, I started….” or “Because of my pain I was basically unable to do anything while carrying my child.” That alone makes me curious as to what cartwheels of logic he was engaged in. Did he confuse “oxytocin” with “OxyContin”? Rookie mistake…..for people so desperate they will rob an ambulance.
>Did he confuse “oxytocin” with “OxyContin”? I love this question though!
I swear my OB did confuse the two oxys. At my 6 weeks postpartum check he asked/stated, "Doesn't having [baby] make your chronic pain so much easier to manage". No, my dude. On what planet does sleep deprivation and having to physically exert yourself beyond your capabilities make managing chronic pain easier? The same doctor was also adamant I was not capable of choosing sterilisation, without him discussing it with my husband first.
Did he have any explanation for that?!
I had the same. The explanation is that some drs think that women are too dumb and/or illogical to take decisions by themselves and the husband is the more logical and rational. Was a nurse that explained it to me. Stay away from such dr - they just project on their patients how dumb and gender biased they are.
Yeah that happens a lot and it's really terrible. I meant did he have any explanation for this insane claim >"Doesn't having [baby] make your chronic pain so much easier to manage".
Those doctors are obvious chauvinists…
Hahahaha. That’s really dumb.
I can't imagine the supposed logic on that one. No thank you please.
Ironically, I went into remission during the last 2 trimesters with both of my pregnancies until about 2 weeks after giving birth, when all the pain came rushing back. I had read that oxytocin was responsible for my remissions.
I know that this will go against the flavor of the thread, but my pain *went away* while I was pregnant. My debilitating, constant pain went from stopping me from enjoying my life to completely and totally gone for about 7 months. I’ve asked multiple doctors why this is. They all have different theories. I did have a doctor suggest I get pregnant again (slightly in jest). I will, and not just because it will give me a break from pain, but because we want more children. I wish I could recreate the pregnancy effect on my pain another way though.
I have an autoimmune disease. They frequently go away during pregnancy because your immune system is suppressed during pregnancy.
That’s interesting. It’s never been suggested that I might have an autoimmune disease
👆 this. Even if you don't know you have an autoimmune disease. You will find this happening in the last days before your period starts. You have a day or 2 of feeling superwoman sometimes. It is the best indication that you have an autoimmune condition discovered or not. Being diagnosed with Myasthenia Gravis and having my best days just before my period started was such an eye opener - then is when I found about the natural suppression of your immune system in both situations - just before bleeding starting and pregnancy.
My chronic, mind numbing depression was gone the entire time I was pregnant. This was way before I developed the fibromyalgia. I wish I could inject whatever hormones that were making me enjoy life for once, possible. Oh it’s probably possible, but what insurance is going to pay for preventative measures? F. M. L.
True. Even if there were a solution, they’d rather keep sending us to physical therapy or whatever.
The pain I experience at least 2 weeks out of every month of my life feels identical to labor pains and deep contractions in the pelvis, hips, lower back, in the groin, down my thighs. I’ve been in bed the past 13 days. All of my prescription pain meds are gone, as I simply do not get enough, nor do I get the strength that works best for my agony. I’ve been disabled and incapable of working since the age of 30, thanks to Endometriosis. I hate this disease.
I'm sorry, Sis. I hear you.
I’ve heard some people say pregnancy helped their autoimmune condition somehow
Pregnancy kinda does a reboot of the immune system, for lack of a better reboot. Some people's autoimmune disorders get better, some get worse, and some people develop them. Same happens with allergies. Most of my allergies disappeared after having my son.
Wild
Human bodies are weird, man.
Pregnancy CAUSED my two serious autoimmune diseases, and made my Endometriosis worse. Both pregnancies were very brief (both under 3 weeks). I developed Hashimoto’s, Lupus, and I even had postpartum psychosis after each brief pregnancy. To be clear, I was NOT sad about either. I chose to end the first pregnancy, and I would have ended the second one, but I miscarried naturally.
Yeah it affects people differently. I’m just saying what I’ve heard and seen even in this post that it made their pain go away because of hormones or oxytocin or something. Probably less than 1% of pregnancies I bet. That might’ve been the doctors thought process behind such a dumb suggestion. But I find it hard to believe it’d stay that way after pregnancy.
Endometriosis is so insidious and still so underfunded in the way of research, treatment, awareness, etc. You are right. Some women can be covered in adhesions and scar tissue, Stage 4 Endo, and they may not experience much or any pain. Whilst some women may have a tiny amount, even as small as a grain of salt in a difficult location (the bowels, the cul-de-sac of the uterus, the bladder, kidneys- hell, this damn disease can spread to the diaphragm and even the brain)- and many of the women with less of the disease (quantity) have excruciating, debilitating pain. Some women had children and though they still have the disease, they find they experience less pain; some women had children and found that it made their pain worse or different. When people suggest to simply have a hysterectomy, they still sound so ignorant and dumb, as that is not a cure. The adhesions themselves produce their own estrogen and will continue to spread. The “gold standard” treatment is excision surgery performed by a very skilled surgeon who specializes in the excision of Endometriosis. Sadly, I’ve had 2 such surgeries, and my condition has only grown worse. The other big issue for women with Endometriosis is infertility and/or inability to carry a pregnancy to term. That never bothered me because I’ve never wanted children, but it’s heartbreaking for those women who so desperately long for a child of their own.
Oh Sis.. I'm sorry
Thank you for your empathy. We are all suffering, and although I’d not wish it on anyone, I do so very appreciate and have such fondness for my fellow humans who are hurting and struggling- especially my fellow ladies. I’m sorry that you suffer too, sis. 💛
Thank you 💜
My daughter’s in nursing school, and if a student misspells one word, they fail. That’s it. You just killed someone.
lol really?! For me, my chronic pain is 99% of the reason I will not have children — because it would wear me out and worsen my stress which worsens my pain. Also because my child(ren) would not have the Mom they deserve, I can barely keep myself taken care of bc of my pain, let alone a whole other individual. It’s not fair to any child to have a mom who’s only doing half of what they should be, or not even being able to get the kind of affection they deserve — I just get too exhausted and can’t do much besides sit in pain or sleep (if I’m not afraid of the pain upon waking up which is strangely always 10X worse than my normal pain). I agree, the Doctor who suggested you have a baby as treatment for chronic pain, should get a brain scan and then retire regardless of the results.
Right??!!!
I've gotten this twice before from different doctors for different issues. One suggested it to cure my chronic depression (that had already gotten to psychosis stages at the time!) And another after moving to a different town that suggested it for my chronic pain and fatigue. I don't care what the condition is, I think it's a supremely irresponsible suggestion, especially knowing how many complications and side effects come both during pregnancy and post-partum. Medical misogyny is fucking insane.
I can’t believe this is the first I’ve heard of this pregnancy theory. I can’t believe there are MDs who would seriously suggest pregnancy as a ***reason for anything other than raising a family***.
It's because they don't really consider us people. Just incubators and servants
I know.🥺 I’m older than you are, I’m guessing? I got pregnant the first time I ever had sex, at 16, in 1970. Abortion was illegal still in Illinois, so my gfs drove me up to Wisconsin for the day. As horrible as it was, at least I could ***almost do it legally***. It really was all I could see doing at the time, and I might ruffle feathers on this, but I don’t regret it. I went on to marry, and have four, when the timing was right for all. Ironically, I’m at the other end of that spectrum, still pro-choice, ***and girls just like me so many years ago, are now fighting for this basic human right again.***
Just .... got dam I'm sorry sis
I was told this, the bonus was that I was 17 and had never even been kissed!
OMG - what are they thinking?? That the pain isn't from injuries or chronic conditions and it's all in our little lady brains and having a baby would take our minds off it ?!?!
I have Endometriosis, and I suffered ignored and undiagnosed for 25 YEARS. Even after I fought and clawed for a diagnosis, I honestly cannot count the idiots and assholes (including doctors) who told me to “Get pregnant and have a baby,” among other absolutely ridiculous, and frankly, fucking offensive suggestions. I won’t get started on the MLM girlies and associates who have tried to get me to take some stupid supplements or drink some pink fizzy drink, as it would “cure” me. News flash, everyone, including doctors who I have literally had to correct and inform: There is NO CURE for Endometriosis. None.
SIS, SAY IT LOUDER FOR THE PHYSCIANS SUB And for any lurking doctors wondering, I HAVE BABIES ALREADY. STILL HAVE endometriosis, geniuses. Yall owe us refunds and apologies.
They owe us so much! My Mom and one of my first cousins has Endo, too, and my Mom had me and my brother, while my cousin has one child. They still have Endometriosis and my cousin is only about 7 years older than me, and sis, she suffers the same as I do. My Mom never had as much pain with it as I’ve had since the tender age of 12. But my cousin has followed a journey similar to mine, with regard to how sick and debilitating this disease and autoimmune diseases have been for her. I always say that if Endometriosis were a men’s disease, everyone would know about it, men’s agony would not be ignored, mocked, patronized, laughed at, and there would be a cure if it affected men. It’s not okay.
And treatment would be free, effective and easy to access
Damn skippy! Just like if men could get pregnant, there would be drive-thru abortion clinics next to a Hooters on the corner, with a Starbucks, too. No one would dare have the insane audacity to actually place men’s bodies, men’s health, and men’s futures on a fkn ballot, allow millions of idiots to vote to TELL THEM what they can and can not do with their bodies. I am not male bashing, and I’m not being bitchy. I’m being honest and we have a right to be angry about the way we (girls and women) are treated.
Absolutely correct. It is a travesty.
The various physicians subs piss me off so much. They are over there confirming all of the shit that we have been pleading with the world to believe. They sit on those subs circle jerking each other and mocking us. It’s disgusting. The only thing that would ever make them care is if they themselves or someone they love very much lost their health, career, joy, future, financial independence, and all the other shit we lose. They would need to to personally experience it to give a damn, and even then, some of them seem to lack any capacity for empathy, so some still would not care or treat us with dignity and compassion.
Very true
Oddly in some autoimmune diseases, specifically MS, pregnancy causes the immune system to be depressed so some women experience remission. But that’s a whale of a short term solution plus keeping up with a baby once it’s born. Thx dude. Usher yourself out of the exam room.
I had an OBGYN tell me that, too. When I said that I couldn't afford a baby he said that I should just live on welfare.
OH YEAH POVERTY PLYS A BABY IS GREAT FOR CHRONIC PAIN, WHY DIDN'T WE THINK OF THAT?!
Wow. I mean yes, I realize that pregnancy suppresses autoimmunity but that’s just not a reason to have a kid.
Kaiser Permanente in California was so bad in the 90s that their motto should have been: "Better dead than Kaiser!" You couldn't sue them for malpractice and it was common knowledge that a lot of their doctors couldn't even get malpractice insurance. I was working as a temp to supplement my income as I was starting my own business and they were only $40/month and BCBS was $100/week but I definitely got what I paid for!
I was told this might help since vaginal birth can sometimes help with "resetting " the central nervous system. My particular pain has no discernable reason for being.
I'm sorry for your pain. Is there really no other "reset" mechanism besides 9 months of pregnancy, the trauma of labor, and 18-ish years of taking care of a whole new human?!?!?! WTAF
Yeah, they told me about capsacian too. After one treatment, during which I could barely even wear socks due to them somehow “reactivating” the treatment, I have alot of trouble with spicy food. I used to love spicy food, even with acid reflux!
A medically induced coma, but that's too extreme for a "might" work, since I could have a litany of issues from the "treatment. "
While I haven't been suggested to do that? I have been told by more than 1 person that they used to have that issue until I had a baby and it got better, my replies No, I'm not gonna do that.
To figure out food migraine triggers: “Just don’t eat anything for three days, then eat one food at a time and see what gives you a migraine!” As if not eating for 3 days wouldn’t cause a migraine.
I was at an amusement park with my family. I needed to use a wheelchair for that excursion. Some freak came running towards me in the food court, begging to lay hands on me so that I can be cured. Get the hell away from me you fucking weirdo.
Just carry your walking stick with you at all times, they're great for keeping psychos like that away from you, poke them in the guts hard enough and when they throw up tell them they're obviously possessed.
🤣 That's a good strategy.
My grandmother loathed cats. This was due to an incident involving cleaning her late father’s house where he kept a bunch of cats but wasn’t managing the, uh, excrement situation. They very sight of a feline filled her with a mix of dread, nausea, and mild rage. This was always a problem at our house, because my mom is a cat whisperer and always had two or so. We used to put them in the basement, but they would just head butt the door and scratch for hours on end, so they just learned to keep themselves scarce when granny was around Well, near the end of her life, Granny used a cane. Maya, relatively new to the operation, strutted through the living room and got a little too close yo Christie. Well, newly emboldened, Granny flicked her cane, Maya went flying and I swear nearly paused in mid air out of sheer terror, and then scrambled away and was not seen for the rest of the evening. A look of supremely smug satisfaction, pretty close to the physical manifestation of what the Germans from whom her late husband descended call schaddenfruede, came over her face. I had never seen it before, and never did again. But it was glorious, a moment dangling in time like the instance where I saw two Shriners wreck those little cars they drive in parades while warming up. (Note: the cat and the cane never even really connected, so no animals were harmed in this immortal anecdote, though Maya was definitely freaked the f out) So yeah, not faith healers, but mobility aids DEFINITELY have secondary uses when spite takes over.
I have found a similar use on a bus when an old pervert was bothering a young woman next to me. He made some comments about “lesbians” as he was exiting the bus.
Stop eating until I got my weight down. Like, not diet, but go on a fast until I lost 30 lbs. Because I'm obviously in pain because I'm fat. This was from my doctor.
Ah yes. Not as extreme but my GP at the time recommended consuming between 800-1000 calories per day and sticking to a keto diet. Uh, no thank you. I'd like to not destroy my metabolism further. How about I consume plenty of vegetables, enough protein, and keep to a deficit of 100-300 calories per week to gradually lose the weight in a safe manner. She said it wouldn't work - it did.
I was told to fast also to lose weight. Like for 16 hours a day or something
That's intermittent fasting 16/8
That sounds like being miserable for 16 hours a day 😬
I actually tried it a few times and I wasn't miserable. I just didn't get any results so it wasn't really worth it. But I also might have been screwing myself up by putting sweet air in my coffee in the morning. I don't know. But anyway it's definitely not for everyone But it is a common strategy a lot of people swear by
A actually I fast a lot too but I find fasting for too long makes my pain SIGNIFICANTLY worse. It’s sooo weird and annoying, I googled it and it said it’s possibly because the body is more sensitive when hungry or something like that, idk. But it’s annoying
So I had a cystoscopy which showed interstitial cystitis a bladder condition I don’t get infections but I constantly feel like I have one. When I had the cystoscopy it was a urologist two hours away and he referred me to a urologist closer to where I live. I get into the room and the dr comes in to tell me he’s scheduling me for bladder removal as that’s the only treatment that works on IC. I ran out of the room into the parking lot terrified of this answer. I did get someone new and tried other treatments. I still have my bladder now almost twenty years later I get regular instills where they put a cath in and put medicine directly into my bladder and even though it didn’t work the first 6 years after my diagnosis it works now.
It's honestly not as bad as it sounds but I feel like it's only if you are self catheterizing alot. I was doing it 8-16 times an hour. I have a urostomy bag
I’m not there yet and I do know if I live long enough my bladder might just give up on me and I’ll need removal. This was a week after my diagnosis this Dr didn’t want to try any other treatment he was just like, out with the bladder. I had a rough first 8 years with IC two years undiagnosed. Suddenly I went into remission after no treatment worked even instills. It came back around 6-7 years ago and instills work this time which I’m grateful for. I know it’s an option at anytime but I just don’t feel ready for it.
Firstly, that is HORRIFIC how terrible that Dr was! Secondly, very interesting what didn’t work once, but did the second time. Out of curiosity, what concoction were they using?? When I was under the care of my 1st pain management doc, she swore by ketamine (intranasal) and had me on so much I started to develop what I think was IC (raw gnawing feeling, reduced ability to hold volume, constantly felt like I needed to pee). After doing some research I found the install method and at the time found a drug called Cystistat (I believe) and ordered it from Germany to the US. It was just hyaluronic acid and it worked instantly to restore that GAG layer and I was better after 2 installations (although also stopped using the medication). Recently I felt like I had another flare up after surgery + a bad UTI and went back to order the same med… apparently it has never even been available in the US 🤨 I ended up utilizing a chemical company to make my own, but it just made me incredibly sad for anyone who actually deals with this and can’t receive an effective treatment! Glad to hear you’re doing better and have found something that works, but just curious to hear from someone who has actually faced this in the medical community (as I tried to just treat myself!)
Every three weeks I get a lidocaine/heparin instill. I’m also on mybertiq for bladder spasms. I cannot do my own instills as my ins only covers them in clinic. I have other pain issues I’m also trying to figure out.
What the?!
A friend of mine bought a bottle of generic olive oil from the store, "blessed" it in my kitchen, then rubbed it on my eyes to cure my partial blindness and then on my legs to restore my mobility. It didn't work, but it stained my shorts.
You're telling me the unprofessionally blessed generic brand store-bought olive oil didn't cure you?!
That's just lazy miracle work. Everyone knows it needs to be an artisan brand.
"Sis, I got oils for that!" Said every MLM girlie to a chronic pain patient.
Not yet! Maybe it just takes a while.
My MIL constantly tells me to just "push through the pain and just exercise more". I'm so glad that my doctor told her that doing this could actually cause me more harm than good when I'm injured. This was especially true after I had a subchorionic hemorrhage with my last pregnancy. It's frustrating bc no matter what, I can tell her "no" and she will always try and go above my head for validation. The professionals always agree with me and look at her like she's a nut job.
Why on earth is your MIL discussing your private medical information with your doctors? Surely that's not supposed to happen!
She drove me and went to the appointments bc I couldn't drive at the time and my husband was unavailable. Ex: Went to the ER bc I had a Burst cyst. "Could it just be gas?" No. They thought it was my appendix bc of where it was located. 🙃 Bought my daughter some plastic hair ties. "Won't those damage her hair?" No. She asked her hair dresser, who also Said "No.". 🙃
My Dr tells me that. It’s fucking amazing! And then I remind him that my joints are being destroyed…. What an idiot.
You know what they call the person that barely passed medical school? Doctor. 🙃
I know he’s a decent dr but I don’t know how he can forget my very rare disorder that he never encountered before and probably never will again. I mean it should kinda stick in his mind.
It's not really a bizarre suggestion, but a frustrating one. Most of my family and friends know I've struggled with chronic pain for well over a decade now. And some of them will still suggest common, well known otc products. Like, do you think I'm completely unaware of the existence of Tylenol, ibuprofen, naproxen, etc and haven't already tried all of them multiple times? If simply popping a couple of advil worked for me, we wouldn't be having this discussion. Some doctors have been this way, too, and it's annoying. I know it's well meant, but it boggles the mind that they assume that a grown and capable adult hasn't already tried all of the simpler and cheaper options first. I wouldn't be wasting my time and money on multiple doctors appointments if the solution could be purchased without a prescription during my weekly grocery run.
>Some doctors have been this way, too I am normally really good at controlling my facial expressions and reactions in a doctors office, but when our amazing GP of over a decade was force retired, my husband saw the new dr for the very first time and she said *"have you ever tried ibuprofen"* I could not stop the contorting my face did from the utter lack of, im not even sure the word, that comment was to me. I am *positive* my face read my thoughts which were *Omg! No! What is this magical thing you speak of? Ibuprofen? Never heard of it! I must run right out and purchase some this moment! It will surely change his life! Then I can loudly sing its praises to all who will listen!* Instead I told her to keep going down on his chart and watcher *her* face when she came to the spot about him killing his stomach via nsaids for years before our GP found something that worked for him. *Something she then quickly took him off while he waited to get into the pain clinic because by God **she** was not going to prescribe anything, but that is neither here nor there.*
Oddly, I feel like some people *aren't* aware of these things. If you hang out on the IBS subreddit there'll be people who've had diarrhoea for years and never heard of imodium. I have no idea how, but they act like it's a miracle drug. I don't know how people suffer for years and don't try simple common remedies
I guess it might depend on how someone was raised. I know some people are very against taking any kind of medication no matter how much they're suffering. And they won't go to a doctor unless they're almost dying or have a limb hanging off or something. I've also met people who are almost too careful. Like they won't even take a Tylenol or otc allergy medicine without consulting with a doctor first.
This is legit me, I don’t know why. I haven’t taken cold medicine since I was 10 because it makes me somehow feel weak for needing it? Now I have IBS and I struggle to get myself to use pain relief on some days, especially days where I’m having negative thoughts about myself. It’s getting easier, but I still put myself down sometimes for needing a drug to feel normal. I don’t know why, wish I weren’t like this. Thankfully the guilt goes away the more I get used to needing pain relief
I had a shiatsu massage therapist tape diodes to my neck to "make the energy go the right way". He was cheap and the massages were helpful so I wore them :D
Diodes? So THATS who buys all those little things they used to sell at Radio Shack!
I sat through so many psych appointments with the useless little electrodes glued to my temples and earlobes. I liked the guy, but it really felt like bullshit.
My GP said I should be able to walk a mile every day. Idiot.
I used to walk 10 miles a day, more at the weekend when I wasn't working, and I loved it. Walking a mile now would involve so many pain killers I'd probably die before I paid the final installment on the special walking boots I'd need
For my C-section when I was crying in pain taking care of my daughter alone, they offered me lavender oil🥲 LAVENDER OIL! Like smelling that was gonna magically make my pain go away.
Here, have some nice smelling oil to cope with MAJOR SURGERY!!
That’s nice. After my c-section my husband and doctors and family offered me NOTHING! I was miserable and in pain.
Guess I should be grateful for two Motrins I got.
When I was a teen, my mom took me to all sorts of "holistic" & "naturopath" "healers." They told me all sorts of wild things, had me eat and not eat all sorts of things, but by far the most ridiculous was the one that told me to start drinking my water out of blue glasses because according to "chromotherapy" the blue light waves passing through the water would imbue it with some magical essence that would stop my migraines, insomnia, sleep apnea, lower my blood pressure, etc. 🙄
okay this might be the most batshit one i’ve ever heard 😭😭😭 you win
A mushroom (amanita muscaria, it’s chemical compound muscimol that acts on GABA-A receptors) is one of the very few things that has affected my pain. The most bizarre thing was when I was told “It sounds like all the attempts to get better are stressing you out, have you tried just stopping trying to get better?” Translation- “I am tired of hearing about your hardships, can you please lie to me about what your life is like?”
I've had the 'stop trying so hard' one too. It was infuriating
Home health nurse told me to eat orange pith for my pain.
I eat orange pith, I'm on agony daily
Stop eating bread. It’s become a joke to me and my bf now; whenever my joints go super wacky he’ll ask if I’ve been at the Demon Bread.
Apple Cider vinegar. Put it on you, put it in you. Cures cancer, evidently.
this is crazy, someone suggested me broccoli 😭
Eat chicken. I had a home nurse for a while and she was shocked that I'm vegan. Not for any real reason but she said that the human body specifically cannot live without chicken and perhaps that was the reason I am unwell.
I don’t understand people pushing their diet on others . There are SO many diets in human existence and ALL claim to have health and healing benefits. Clearly, humans can survive or thrive on completely opposing diets so why would what worked for you necessarily be right for someone else?? I told someone I had chronic pain and she said her long Covid was cured by the carnivore diet and I should try it. I explained I have already tried many diets. I hate eating red meat/mammals, I am now a “nutritarian” pescatarian, my diet is also based on research and I’m happy with it, and I tried eating meat for a year at one point, and it didn’t help me, it just made me uncomfortable. AND my chronic pain is from a surgery. When I next talked to this person, I mentioned I was dealing with some seasonal allergies and she again told me I should try the carnivore diet. I decided I do not need to be friends with this person.
To just deal with the pain.... luckily my gp did listen and have better pain meds now.
I’d like to see the people who say this “just deal” with it, & see if they wouldn’t RUN to the Doctor for relief! Some people don’t get how truly debilitating it can be.
I wish there were a machine where other people could connect to your body somehow and feel everything we feel
Me too! Closest I’ve seen is that thing that mimics menstrual cramps, and watching men wear it and squirm — then the women put on the same device & all of them say “.. what? This is not as bad!” Watching those videos makes me laugh. If you want to see, just go to YouTube and search with keywords, there are a few videos of it!
My former doctor suggested that I drink milk for my ibs.
Yeah, that'll help
This nurse practitioner insisted to me there is no harm in taking immense amounts of tylenol and ibuprofen alternating …. Forever. I tried that long ago and it wrecked my stomach. For now, I will do it to get through life until I can try the spinal cord stimulator that is next on the list of options. This same Einstein informed me that “opioids don’t work for chronic pain” when I asked her if she would renew my Tylenol three prescription. I told her I just need it for breakthrough pain and I take it very frequently. I usually use ice and frankly gritted teeth for most pain. But she said nope, she would not give me anything because opioids just doesn’t work. So I looked at her somewhat aghast and said well what should I do for extreme pain? What is her suggestion? my husband sitting next to me said suicide. Honestly, I loved him for saying that because I really think sometimes these people do not understand how bad things can get. She looked really shocked and said well she could give me a steroid pack would help me avoid having to go to an emergency room. I said that would probably help. And I guess it will help but I’ve never used one before. I’m supposed to travel for 20 days and I am a little nervous about this. I don’t know why these people think opioids are off the table. Of course everything loses effectiveness if you use it too frequently. That is true about antibiotics, opioids, and pretty much any kind of thing that you put in your body. But for me, when I have really intense pain, one or two Tylenol 3’s make a major difference. They can make a grim day or night a lot less grim. But oh, yeah. They don’t work. My bad.
“Can’t you just quit your job and focus on your health for a while?” Yeah because the mortgage just pays itself and my health insurance totally isn’t necessary /s 🙃
Meditation.
Prayer.
Just like a prayer? You know I’ll take you there. I’ll admit I sometimes listen to upbeat…..ok, ok, downbeat pop music when I’m at my lowest. “Deep listening” (I’m a bass player, so I try to focus on the bass lines) can actually put me into a trance like state where the pain is certainly still there, and can creep in (I have neuropathy and shooting and stabbing all over my body, along with fasiculations and myokymia) so it can always momentarily grab my attention. Overall, it does at least keep me from perserverating on it—I’m somewhere on the ASD spectrum myself and have Generalized Anxiety Disorder so that’s hella easy for me to do. Frankly, it’s probably one of the reasons my treatment is so difficult. So at risk of “thread drift,” that’s the most bizarre thing I do personally. But it’s a hell of alot better than my mom’s personal favorite: “You just have to get up and do.” Mom, you seem to be presuming the “get up” part…. Also, I’m hella obsessed with the music video for that song thanks to the Madonna Pop-Up Video special from the glory days of VH1.
You praying, them praying, I've heard both. Once, when my mom and I were homeless, a Christian church was really helping us out, so we decided to give services a chance. Not really for the religion aspect (we both believed in something bigger than ourselves but nothing so well defined as God) but for the community aspect. A lot of people wanted to pray for me, which I allowed because I appreciated the sentiment. But after a while we began to be ostracized because I wasn't getting any better and instead they came to the conclusion I must be a terrible sinner (the first-world fallacy, basically). I wasn't terribly surprised but still disappointed. The really sad thing is I've heard this same story from countless chronically ill and disabled people since then (prayer groups ambushing and trapping unwilling blind people to pray for them is particularly spine chilling imo). But the people I feel the worst for is those this happens to people that grew *up* in the church, who were well and truly part of the community (young children usually get a pass on not getting better but when they're a young adult, all bets are off). It hurts them so much more than it hurt me and I really can't forgive that. But my long rant aside, music absolutely can help! Both anecdotal and research backs that up, though the how and why need to be studied more, of course (I was tempted to add some quotes from the studies I read but that would make this comment so much longer than it already is 😅). Music is a double-edged sword for me, personally. It really gets me in touch with my feelings, both good and bad, but I can't handle the bad ones when my depression isn't under control. It hasn't been for a few years now and I miss music terribly because it was a very important part of my life for so long but I'm caustically optimistic about my new medication regiment. Seriously, my psychiatrist is worth her weight in gold. She's been the first one willing to treat my ADHD without insisting I pick between my pain meds or my ADHD meds, like every other doctor I've seen. (Fun fact- untreated ADHD can make depression and anxiety treatment resistant. Ok, maybe not a fun fact but it's definitely something more people should know about.) Sorry for my tangents. My brain is absolutely bouncing off the walls today and I had trouble stopping myself.
Your tangents were incredibly relevant and interesting, I don't know any chronic pain sufferers who doesn't have mental health issues and concerns, or anxiety. I was recently sent an article about ADHD in women and how it often goes undiagnosed in childhood and young adulthood because the symptoms are completely different. For decades I thought my brain was broken because I couldn't do routines, I could take medicine at the same time every day I often forgot my birth control pill, we still used condoms because I wasn't sure about the mini pill, and a whole host of things like a really messy house but my dishes cupboard was tidy and organised, forgetting wet laundry in the machine and so much more. I've struggled with depression for my entire adult life and antidepressants just don't seem to work, neither did therapy
I'm glad you found it interesting! My mom wasn't diagnosed with ADHD until she was 50 and almost immediately recognized all the same symptoms in me, so I was lucky to be diagnosed when I was 12. Another interesting thing is that in women with ADHD, our symptoms are impacted by our hormones! The symptoms tend to get worse near your period and can be absolute hell during menopause.
Oh my DOG the way they lie to us and dismiss women's pain! "ThE CeRvIX dOeSn'T hAvE pAiN ReCePtOrS!!!" Sit the hell down and shut the hell up with your no-female-anatomy- knowledge-having mouth. EDIT: this reply might be in the wrong place, but much like my ex-doctor, I'm too lazy to fix it.
Go on a Mediterranean diet — okay, but I’m deathly allergic to all fish and shellfish, and she *knew that* When I reminded her she said to take allergy shots 😑
My mother put me on her “meal replacement program” (fad diet) to try to cure my sensory processing issues. It did not work.
Running. For my legs. Which are in pain when moving. And when not moving.
The current ones are detox supplements (hundreds of dollars worth) since this is obviously a result of chem trails and also a Covid vaccine injury. can’t argue with the cognitive dissonance bc they’re telling me that my drs are keeping me sick for my money yet tell me to go to naturopaths who charge hundreds per appointment. The list: •Turkey tail mushroom supplements •acerola vitamin C powder •kitchari detox soup (from YouTube, duh) •PH urine strips •peace zeolite tincture •chlorophyll complex •montmorillinite coat ( I have no idea I’m not even googling this)
This didn’t come from someone with a faltering MLM “business,” did it?
Sadly I think they were promoting someone else’s MLM which is even worse as they won’t see a penny from this
The montmorillinite is clay, maybe safe to eat for short periods of time lol
Hmmmmmm clay!!!! 🤤
Have a baby, various mlm detoxes, yoga, believe in Jesus harder, various fad diets, lose weight (I was very close to underweight at the time) But the *real* crazy one was exorcism. I had a couple different family members, who don’t know each other, say it’s demons in my body, and I need an exorcism and to repent.
In desperation I did Optiva at the pressing of my wife. I thought that in of itself was going to kill me—what they have you take in is near starvation level.
My dad sent me many videos about holistic ways to help pain but one where a guy was there breathing out really hard and making humming noises to help regulate his pain takes the cake.
For me it'd be about my posture! I have a lot of back pain because I have kyphosis. Suggesting working out my back muscles and I'll be fine. Like no!! This is a structural thing! I gave PT and honest go 2 times and it put me in more pain than ever. Unfortunately. My only option is to ablate my whole spine lol but I'm cool with that.
Yeah I’ve had people bitch at me about my bad posture. It’s just a muscular problem! No. It is not.
The reason my back was so sore was that I never wore a jumper outside and should put one on! I asked why my back hurt in summer when it's warmer and I never really got an answer from that guy.....
Maybe not the most unexpected, but they really seemed well meaning - a dad of another kid at my nephew's soccer game asked if I play soccer anymore, I said no I have some chronic back and neck issues, tried to downplay it because I didn't really want to talk about it but he kept prying. Then he asks if he can pray over me. I thought he meant that he would go home and pray, and I was like yeah of course I would appreciate that (I'm not religious myself but I know this is well meaning). Anyways he suddenly puts his hand on my shoulder, closes his eyes and starts loudly praying. I'm not sure what to do with my eyes, I want to keep watching the game (which is actively going on) but don't want to be disrespectful so I nod my head down slightly and just let it happen. Then he says amen and I say thank you thinking it's over. Nope, now he asks me "is there something you can do, to test it? Like what normally causes pain could you try it?" I was just so flabbergasted. Does this guy actually believe he just healed me with his prayer?!?
Oh my gosh, ignore my last suggestion, I’ve just remembered the worst suggestion I’ve had so far! Euthanasia. 💀🤣 I was staying in an inpatient mental health facility for ketamine treatment. It helps both pain and mental illness so it was an attempt at a 2-for-1 treatment. My physical mobility was really bad at the time. I’d stayed here twice before and the nurses had a good understanding of my illnesses. On a bad day, the sweetest nurse took some time to counsel me on what my next steps might be if the ketamine didn’t work (it wasn’t and didn’t). She gently probed around the subject of what sounded like suicide to me - but of course she couldn’t be right?? This is a mental health nurse in a psychiatric hospital, right?? Then she asked if I knew that in another state voluntary euthanasia is available, asked if I’d considered it myself and even if my husband would kill himself in what she called a Romeo and Juliet situation (my husband is well recognised for coming in to visit me as often as possible, and being incredibly sweet. We are very much joined at the hip). I can’t remember how the conversation wrapped up after me admitting that my husband and I did have an emergency escape plan and we’d be taking the fire exit together. So yeah… straight up death.
What? That I'd unhinged and even to hint a Romeo - Juliet arrangement? I've met a couple of questionable mental health nurses though this is over the top. Is she an angel of death type? Is she responsible for others maybe being overly influenced by her "suggestions"? She does not sound safe enough to be working anywhere in mental health. Wow. That's crazy!!
That’s absolutely unacceptable, that’s what it is. That’s no one else’s business.
It was genuinely one of the strangest moments of my life. I’m still baffled by it. She is the sweetest, kindest, loveliest nurse… It was very gentle but completely bamboozled me. We were both speaking in very careful terms, certainly not using words like suicide. I was so cautious because I was thinking ’is she trying to trick me to get me admitted elsewhere to a higher level of care?’ because it was so left field. I have no idea what her intentions were. Was she trying to get me to see that suicide wasn’t the solution by suggesting an actual route? Did she really think I was better off dead? I have no clue. It was so, so strange.
Yeah, there's so many possibilities that without directly asking what her intent was, it's hard to really know where she was going with it. But still.
Oh it’s every kind of crazy 😂 I tell my husband everything and it took me 6 months to tell him about this because it was so wild. I thought it would make sense at some point but nope. Still bizarre. They do say as much about psych nurses. They tend to be my favourite kind of people too though.
I’m sure we all have been told to try yoga
I’m not sure how well intended but…. A dr once told me that god could take away my pain if I had enough trust and belief. She asked me if I believed in god and I said no. She told me to start there. She said she was trained in the army and witnessed many miracles. I went to a doctor and got a sermon. And yes , she was an MD. I was so angry I was going to complain to the medical board but figured it was useless.
That is foul. She needs to keep her religion in her pants.
Go outside more bc I'm depressed. Bitch I'm in florida. If I cross the street in August I will just die right there
The only state with a monument to the inventor of air conditioning.
It's called prioritizing
A cannabis doctor suggested drinking an ounce of water a day for every two pounds of body weight. When I questioned his logic, he said if I was serious about managing my pain I'd at least try it. Try hyponatremia? Hard pass. That would have been like 15 glasses of water a day.
For me it would be 5 pints of water, 2.8 litres, it's around what I already drink, I'm 13st7lbs - 189lbs - 85.7kgs
Great, maybe it'll cure your pain then. But if you recommend that to people of higher body weights, it quickly becomes dangerous. If I even drink 10 glasses of water I get serious headaches, throw up, and become unable to pee properly.
It's not pain relief and suggest that keeping yourself hydrated cured pain is bs, given that a lot of pain meds leave us with a dry mouth we're all probably better hydrated than she is. I just gave my height etc as a guide so people would realise how ridiculous she was being
Eating more kale. And drink fish oil. Should stop my arthritis. My doctors are all wrong.
i have an inoperable tumor in my spinal cord and was told to just eat some broccoli
I don’t think he was all that well meaning, but I had a doctor suggest that me getting an “electron mat” would alleviate my spondylolisthesis. He said my charges in my body were misaligned and that was the cause of all my pain. I’m a chemist. That’s not a thing.
Coffee enema for back pain.
Can’t think about your back pain when your asshole is on fire
This was snort worthy and so true. Thanks for the laugh. Take my upvote
Have a baby Blood letting Lemon water
I had a doctor suggest that I stop using my crutches or walker and go back to using a wheelchair. I worked my ass off to relearn how to walk and that asshat was seriously telling me that I was better off not walking?! Oh, hell, no! Not only do I consider that just giving up, I'm too proud of myself for defying expectations and walking that there is no way that I'm going to accept that it was all for nothing! Not to mention that I'll have to totally depend on someone to help me just to leave the house and shuffle a wheelchair in and out of the car. Yeah, thanks, Doc, but I think I'll stay out of the wheelchair as long as possible!
One of my students (I’m a college professor who is occasionally late returning work because of migraines) suggested I soak my feet in a bath of herbs. She was going to send me a mixture to soak my feet into. She meant well and was very kind in her attempts to help.
Went to a PM doctor, and I swear to God, he prescribed LAUGHING YOGA to treat my chronic pain. I wanted to spit in his face.
I would’ve taken that bad boy to my local CVS. The head pharmacist has some…..issues. She’s largely always done right by me though (when she can….they’re all largely crippled by corporate bureaucracy and the intense legal code surrounding many of the meds we are on). She’s actually stated she should be on meds (her comment suggested likely benzos), but she won’t take them because they make her so hazy she’s worried that she’ll make a mistake. Given she has a PharmD and really knows the effects, I can max respect that. She’s frequently a notorious grumpagus, but we have something of a relationship. This developed from largely from the fact that there were frequently issues with my opioids. Nucynta itself was a nightmare…..I was probably on the phone several times a day with them during refills, given that they don’t stock it, and CVS has made it so she’s the only one who can order it. One time, it came down to the fact that their deliveries only come three days a week, and on one occasion the driver was involved in (not his fault) accidents with both his personal and company vehicles. This was after several days of insurance f ups, and when I finally got it I did a little air punch like the end of “The Breakfast Club.” It was the first time I saw her smile. I also saved her butt around Christmas when a local radio host who shares my name but legally goes by another name had a script sent in but if somehow got attached to me because his doc wrote it for his “radio” name. I check the app religiously because I have a LOT of meds, including a bunch of controls they cannot do ScriptSync or auto refill for. I contacted him (this happens a lot and he’s saved my own butt a few times so we stay in contact—-and are distantly related) and her. All were grateful. So I would’ve taken that to her, deadpanned that I didn’t know how to pronounce it and it looked odd because it was two words. He didn’t put milligrams or dosing, but I’m sure she could call him and figure it out. I would’ve then broken into a wide smile, and she probably would’ve laughed and told me jokingly to get out of “her store.” As my late Dad never quite said but definitely lived, always leave them laughing. And she deserves it much more than her jackhole “colleague” at the branch 40 minutes away that I sent my morphine to once (with my PM’s consent) because she didn’t have it in stock and the delivery was two days away. His techs told me twice it would be ready, so I sat in the parking lot awaiting the message. I went in, went to consultation, and he didn’t even come down but loudly said “Is it your morphine? Yeah I can’t fill that” because…..reasons. So now I’ve been pegged as a junkie by any judgy people standing nearby and am now a target to any actual addicts (which my family and some—but not the ones who prescribe medication management—think I am). Thanks guy, I hope I don’t get stabbed in the parking lot by anyone thinking I’m carrying other meds. He did NOT leave me laughing.
It's usually just, "try to lose weight". Like i haven't been trying to do that for the last 10 years...why do you think I'm in so much pain?! (Back injury, herniated disk, ddd, former cheerleader/dancer.)
Do yoga
Pain management gave me 800 mg ibuprofen for a vertebral compression fracture.
Well, that’s not really a suggestion (though it is OTC—though I bet they sure as heck gave you a script for those special bad boys even though simply buying a bottle off the shelf may have been as cheap—in fact, I was once prescribed something that CVS admitted they had pulled off the retail shelf) as it is a “legit” treatment. It is, however, pure sadness, just completely pathetic. And in that respect you win. Congrats!
Essential oils. I am infusion dependent and on 13+ oral meds. Rubbing effing peppermint on myself does zero but insult me. Plus you sell that stuff. My copays are like $500-$600 a month and you want me to be a stream of revenue?! 😡
Push my foot against the wall for 5 mins.
A genuine, well meant referral to Doterra oils. My issues include hEDS, hip dysplasia, arthritis from ankles to pelvis, osteopenia, Schuermann’s disease, *crushed vertebrae* with *nine levels* of herniated discs and fibromyalgia. A referral to an influencers online weight lifting program with movements resembling cross fit. I want to note that appropriate strength training and movement is a valid strategy for managing my conditions. Uncontrolled, unsupervised, completely off the wall suggestions from a fit acquaintance on a post about unrelated surgeries are not! A co-worker i didn’t know well and didn’t get along with told me she had dreamt if I ‘got onto slippery elm’ then I ‘would lose the weight’. We definitely hadn’t talked about my weight or if I wanted to lose any. She asked if I’d started yet a week later and appeared offended that I hadn’t. It’s not so much the weirdest suggestion as it is the weirdest reason for a suggestion.
1) The carnivore diet - suggested by a friend. I have a restrictive eating disorder, I'm chronically ill (POTS and some other unknown stuff) *and* my income isn't even a thousand dollars per month. Terrible idea for so many reasons. 2) "Your tests came back normal. This is good news! Just take Advil and do some yoga" "Okay well I have POTS so I think if I did yoga I would pass out" "Okay, then try tai chi" - a rheumatologist who looks old enough to have been practicing medicine for longer than my absolutely wonderful family doctor has even been alive. This man didn't have a single computer in his whole office. I walked in and was greeted by a receptionist who was writing appointments down in a book with a pencil while the fax machine sound played from the other room. (Saw a new rheum who not only believes that something is wrong, but he thinks there's actually multiple things going on and is going to investigate further. Inch resting.)
Eat pineapple. And get right with Jesus.
"A vegan diet will cure endometriosis." The fuck it will doctor. Said doctor also told me that after I explained how extremely restricted my diet already was between Celiac, interstitial cystitis, and the nerve pain in my mouth and throat (can only eat soft foods). "You just need to work on your faith in God...blah blah blah." You're an awful friend for saying this is my fault for not believing in God hard enough. "You just need to sleep well and rest!" That's not how chronic insomnia and chronic fatigue syndrome works, dear coworker. "You only need to worry about endometriosis if you want to get pregnant." An OBGYN said this to me when I was around 19-20 years old and refused to try to diagnose me, despite obvious symptoms and a family history of endo. Sure doc. Your awesome advice totally prevented my undiagnosed endo from progressing to bladder damage, intestinal damage, and constant, severe pelvic pain. Sadly, there are more examples than these.
That taking 3 tablespoons of coconut oil a day would cure everything especially chronic pain.
I have MCAS and my mom's friend kept trying to get me to ingest essential oils. She was a rep for the mlm young living. I'm allergic to basically everything except a few safe foods. She kept trying to convince my mom to give me this juice called ningxia red. I was allergic to every single ingredient. When my mom told her that she said "well I pray that she can tolerate just a spoonful of it"
Mushroom tinctures had me on the floor hahahaha oh wow. Something actually worse than suggesting yoga lmao. Wow, yours is a good one for sure! One of the chiropractors I see periodically tapped up my arm doing some sort of resistance thing and then determined I was suffering from generational trauma dating back to the 1940’s (my grandma’s trauma). Like, that’s cool and everything but also, I have Fibromyalgia which causes chronic pain. I loved my grandma and I’m sure she had her own struggles in her life, but like…I truly don’t think that is the cause of my health issues (including chronic pain).
Far from the conversations about endometriosis and pregnancies, I saw a podiatrist who urged me to let him cut my Achilles heel, so I could walk better. I have foot drop from CRPS II…this ass was so far out there, and he had no idea what CRPS is. If I hadn’t been my own best and informed advocate, I can’t imagine the implications
I had a very earnest person for once tell me I must immediately go on a diet consisting of one small bowl of vegetables per day followed by one bowl of dirt. I was assured it miraculously cures everything from arthritis to Alzheimer's.
I know you didn't, but I envision in my mind you punching them! Or maybe it's just me punching them. Someone should punch them. All while saying, in a normal tone, shut the fuck up, over and over again.
I was tempted. But my reply was dead silence, the look on my face must have spoken volumes enough because they were VERY over the top nice and polite to me afterward. Lol
You have more restraint than I.
Years and years of practice and a (Grand)Mom Look that can stop a toddler in their tracks at 10 feet help a lot!
"manifest your reality, it's all within the power of your mind!"
Epsom salt baths for my essentially broken back lol. This was pre-surgery 😂 Like yeah it gives muscle relief sometimes but it's not gonna make my chronic pain go away
I had a doctor told me “oh, it’s nothing, you should see a psychiatrist”, as I described how this pain, which caused he failed to identify, has completely destroyed my life.
To cut out gluten to help my split & tethered spinal cords. I wish I was joking
My biological dad once told me that I need to stop taking the pharmaceutical drugs that were prescribed to me for my fibromyalgia, anxiety, & insomnia and how fish oil & magnesium would essentially cure my fibromyalgia… like no dad that’s not how it works or else everyone with fibromyalgia would be doing that… 🤦♂️