8 MISCONCEPTIONS ABOUT CHRONIC PAIN AND ILLNESS [CC]
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- เผยแพร่เมื่อ 12 ก.ย. 2024
- There are so many myths and misconceptions about chronic pain - here are eight that I've faced, and how I've handled them.
Kati Morton's Video:
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04:45 in the video, "It takes so much energy to try to be a normal person." Yes, absolutely! As an invisibly disabled person, I echo this thought in my own mind almost every day. Thank you Jo for sharing your thoughts and experiences!
A misconception about chronic pain:
I have been told that I am too young to have chronic pain but I think that, like most conditions, you can have it at any any age even if it is uncommon. At 16 I should not have to prove my pain to a doctor or school teacher to try to get help. I go to school everyday knowing that I will have to take notes, do assignments, walk down the hall and up and down stairs as well as be a pleasant happy looking person knowing that by the time I get home I will have just enough time to drink a glass of water before I must take a nap because I am so tired and have had to refrain from sleeping through an AP class. I wake up do homework maybe eat something and go back to sleep to do it all again the next day. I think people should open their minds to the fact that anyone can have chronic pain and if they are affected by it to any extent that it most likely affects many aspects of their lives.
A. Renee I am so sorry you’re living with chronic pain...you’re so so right about that. So many people have said that to me. It’s almost like a joke to them sometimes, especially during my teenage years - “oh you’re too young to be in pain, just wait till you’re old like me, everything aches!” It’s not a joke. It’s serious and sucks so much life away and is utterly exhausting. I agree...minds need to be opened, and so much more compassionate.
I am reading and responding 5 years after this was posted. I so hope you have the support system you deserve in family and friends. You deserve that love and compassion.
I have EDS (ehlers danlos syndrome) and suffer from chronic pain virtually every second of every day. The two misconceptions I think I feel are:
1) If you take narcotics for your pain, you’re automatically stigmatized and you’re quite possibly addicted. I can honestly say there is little to nothing I enjoy about pain medications...they make me sick, they give me hives, they make me very cranky and they take away my ability to sleep well when they have to be taken. But what most people don’t understand is people that are truly in this much pain, you have no option most of the time. For me, my back muscles particularly literally rip in half from something as small as plugging in my phone charger. If I just sat and took that pain all day every day, that would be a life so not worth living IMO. You shouldn’t want that existence for someone just because the medication can if abused become a problem. Believe me, if we are at a point that that is what we have to do, chances are we’ve tried everything else available first.
And 2) When we disappear or are flaky, or cancel plans...know that that isn’t because we are just flaky, it’s because we have pushed through so much already in that day that we know we wouldn’t be a person that you would want to be around. We are probably cranky, maybe emotional or desperate, and almost always greatly suffering. If you have a family or friend that deals with chronic pain, if they ever cancel a plan to go do something, maybe ask them if they would like for you to grab dinner and come over and even just hang out beside them in bed. I bet you’d get an acceptance. Just because they’re in pain, doesn’t mean they like to be alone or don’t want to be social...it’s just our assumption that you would not like hanging out with that run down version of ourselves.
Great post! I love your explanation of "flaky". My friends used to get so mad at me for constantly canceling on them, but i literally couldn't get out of bed. It took some time, but they learned about my condition and are very very understanding now. Sometimes you just have to educate people a bit. I love it when in stuck in bed and a friend comes over! So fun to watch a scary movie in bed! 😊
I have EDS too and I’ve never resonated with a comment more. Especially the second part. No one gets it.
Hali Raap Just remember you’re not alone. I’ve realized through all this that people just don’t understand it so they can’t get it (it isn’t that they don’t want to). I’ve had two family members recently have surgery and one got injured and you can literally hear in their voice that like they get it now. They get what it would feel like to wake up every day like that and how much energy that takes just quite literally to “be”. I’m soooo beyond blessed in that my sister in law that is basically my best friend has lupus and we have such similar struggles so I have at least one person who at all times “gets it”. Support is key, even if it’s just one person. Hugs (but not too tight, don’t want to pop a rib lol). ;)
JaimeStylez I have EDS too. One other myth - that opiates eliminate pain. SOOOOO NOT TRUE!!! They dial it down a few notches, that’s all. I was asked to write an article about opiates and chronic pain by the Vermont Coalition for Disability Rights. I published it on my website (see link below). It was published in multiple other places, including The Mighty. I think it might resonate with you.
carasachs.com/opioids-and-chronic-pain-whats-the-real-epidemic/
:x I tend to think only we understand each other through these posts... ppl who dont have won't get it...
Great video. I’ve had severe chronic pain my entire life, 24/7/365 for 50 years. Here’s the thing about the advice-giving:
1. It’s deeply invalidating. It sends the message of “you just haven’t tried hard enough”.
2. Yes, it does usually come from a place of wanting to help. At its core though, it usually comes out of fear. There’s the uncomfortable thought that “if you could suddenly become sick, that means I could too”. People don’t know what to do with that, especially since disability and illness tend towards being taboo topics. It’s scary to contemplate that lack of control over one’s own existence. We have an innate drive to feel some control over our own future. It becomes less scary if they think that we became sick (and stay that way) because we just aren’t trying hard enough. It feel more reassuring and less scary to think “if I got sick I would try harder to get better than you are”. This is human nature. It doesn’t make it easier, but it helps me to understand that this advice giving behavior often grows out of an existential fear.
Yay Sadie!!
You had me near tears talking about being near suicidal. I've said to friends who've asked, I'm not suicidal but I can see it from here. It's really great to know I'm not alone. Thanks!
Call the painting Petunia.
There have been many times I've had to pray because I just wanted to die. It's a hard existence unless you really have a strong relationship with God. Without Him, I would've taken my life years ago. But instead He gives me the strength to keep fighting.
you r not alone ... me too... there r other miserable people too:)
This video is so amazing. I have EDS, chronic migraines, and Fibromyalgia that make me have chronic pain. Whenever someone asks me what it is like to live with chronic pain I am going to send them this video! It is wonderfully light hearted but still informational/ helpful.
Something that I find with people around me is that my pain isn’t taken seriously because it can be so varied. One day I can run up and down the stairs and do Tae Kwon Do -the next day I might need a cane to walk around the city. I don’t know a useful method for getting them to understand other than “it just depends on the day.” But I think sharing this video with some people will give them a better idea of what it is like to live in chronic pain.
Amen!
try searching "The Spoon Theory" by Christine Miserandino. It's absolutely spot on when it comes to explaining chronic pain
Chronic pain is absolutely awful. I work in the medical field and it puts the patient and the caregivers in horrible situations due to the opioid epidemic. It’s very difficult to help people with chronic pain. I really hope yours stays manageable!
About the cow- she looks like a Maureen to me. I dont know why. She also looks like a daisy, but that’s a bit cliche.
Thank you!! I have chronic pain and migraines (also have a chairi malformation), I have dealt with it for a number of years and I'm good at pretending, my doctor had no idea how much I was suffering until I just mentally broke down and my friends don't really get it because I 'seem fine' or they just put it down to me being cranky (yeah I'm mad coz it hurts and I'm over it). I have had very few people actually take me seriously because apparently I'm too young to have chronic pain (I'm 23) which is maddening... sorry I'm rageing just a bit. But basically everything you've just said I have experienced and it is so hard to be positive and fake happy when everything still hurts after you've tried everything you can think of and everything a number of doctors (and physio, osteos, massage therapists, psychologists and exercise physiologists) can think of, it's probably to put it simply the biggest downer there is and the sense of hopelessness, it's not pleasant in the least and while it sucks to know there are others out there that feel the same it's also a bit comforting thank you 🤗
Because you look ok most of the time (because you usually have to fake it) people think you can't possibly be in pain. Even when I have pain I have to work, I have to get on with life and I can't let it rule my life or I'll be in bed 24/7. Then because "they", whoever they are see you as ok then they find out you are doing pain management then you get the whispers behind your back, "oh she looks fine why does she need pain meds" or "you take pain meds? You need to be careful not to get addicted ". If I've heard that 10 times I've heard it a thousand, JUST BECAUSE I HAVE CHRONIC PAIN FROM RA AND I TAKE PAIN MEDICATION DOES NOT MEAN I AM A DRUG ADDICT!!!!! This makes me so angry, people always offer alternatives to meds and I always say do you think I have not researched or tried other things besides taking medication?????
I relate to this comment so, so much. Yes. There are so few times when I've mentioned taking pain medications when I haven't been warned by everyone about not being an addict, or asked if I was one (uhm, how is that appropriate to ask someone you just met?), or told how dangerous it was or what a bad decision it was. I know it is never intended as an insult, but it comes across that way - I hate taking medication. I would stop it in a heartbeat if I could live life that way....I've researched and tried everything under the sun, and I continue to. But pain medication is the only way I can actually live life - its a tool, and one I'm using appropriately. I'm so sorry you know that struggle, too. You're not alone.
They're not the ones who have to live in your body. People don't understand that. Plus, they don't know your life! Nosey Rosies!
Suzanne Brewer same. I keep my pain and fatigue to myself. It truly changes the way people look at you.
I have chronic pain and finally just diagnosed with a L4-L5 disc herniation, in addition to constant migraines. It starts in my lumbar spine and goes all the way down to my foot constantly. None of my friends have chronic pain, so it's so nice finding chronic pain communities online! I'm currently in a doctorate program for occupational therapy and want to work in a setting that I can help others in chronic pain! I'm so glad I found your videos!
We have a saying in the Neuro Lyme community......"You don't "get it" until you get it." Worse still, we are still fighting the ancient dogma of...."Well, I heard that Lyme can be 'cured' with just a few weeks of antibiotics." Arghhhh....yea, for 75% of the people. For those of us who have this weird genetic marker, not only are we more difficult to treat, our pain levels are off the wall. We're told, "no one can possibly be in THAT much pain.....are you a pill seeker? It's either that or it's all in your head." Thank you for sharing.
I love Katie's take on chronic pain but I disagree with the myth that says chronic pain can kill you... it's actually true... when a human body has non stop pain the blood pressure sky rockets. Over time this damages veins, structures, and the heart. Sudden death syndrome is a real risk for long term untreated pain.
It wears your body down, you die much younger too.
this is a cool observation and your point is very valid but wouldn't death then be by heart failure and not pain or heart failure caused by long term unresolved pain? either way it's really cool that you though of this!
@@dianatedesco269 I have a medical degree and also am a pain patient. The medical term is Sudden Death Syndrome with a pain cause.
That just makes you more awesome! and now I've learned something knew so thank you for that also!
It affects your mental health too. There have been days where I think it really isn't even worth living because I have gone weeks with unrelentless flair ups.
Hi Jo! I’ve suffered with chronic pain for over 13 years and am on narcotics for it this whole time! My pain was caused by a surgery I had. I woke up and knew there was something wrong with my back! I haven’t had a pain free day in over 13 years, I know what you’re feeling! My pain will never get better, there’s nothing they can do! I’ve been on every narcotic there is! It sucks! People who don’t have chronic pain just have no idea what it’s like and how it feels! It feels hopeless! I have back pain and knee pain. Pain is just draining, isn’t it? You can never escape the pain! It’s my constant companion! I’ve never looked on TH-cam for the chronic pain community, you are the first one I’ve watched! Thanks for this video!🌺🌺🌺
I was literally told one time that if I prayed hard enough the neurological disability that I was born with would go away. This was years and years ago and I still think about it a lot. Our disabilities are not our fault.
That's insane and nonsense. It's like victim blaming. I'm sorry you, Jo, and many others went through it. Only those who have or are going through it can totally understand, but others can provide support. 🫂
Hey Jo. I don't have true chronic pain in that I only get seriously painful periods, which sap my energy and hurt up to my chest and down to my knees. Thanks to that, I have been known to crawl up the stairs and pass out on the landing, so I understand chronic pain. If I am thinking of offering an idea to someone in pain, I usually ask what they have tried before saying it.
This makes me want to cry. You hit all the notes that I've been dealing with for the last 2 years. I have to act normal for my family and it's a constant battle to tell them I'm not okay. I have chronic migraines and so I look perfectly normal until I start covering my ears or eyes to stop excess stimulation.
Thank you for putting this in the open!
I know this is a 2 year old video, but I'm just watching all of your videos from start and since I'm dealing with chronic pain, and has been for the past 15+ years this is one topic that hits close to home.
I totally agree with you on all parts, it was just me nodding all through the video.
One thing I'd like to add to the part about people "trying to help" is that not all chronic pain is the same. Even if your chronic pain stems from the same part of your body as someone else doesn't mean that your pain is anything alike, or most importantly of all, that the reliefs/solutions for that pain is the same.
Also the feeling of you having to either validate your pain by going through all you medical history for someone to believe you, or having to go through it to make people understand that this is something more than just something passing.
Oh, and this might not be relevant for everyone with chronic pain per se more from a disability stand point, but constantly have to ward off people from wanting to call the ambulance/taking you to the hospital. If something happens, that is "normal" when it comes to your body but that seems very frightening to others who don't know you, and people just immediately wants you to seek a doctor. I love the compassion and the empathy that people have at times, but it sadly does get very annoying - especially having to deal with other peoples emotions and reactions when all you should do is focus on yourself and your body.
Ok, so this became a mini-rant - I'm sorry, but as I said, this is something I'm very passionate about.
For anyone reading this - I hope you have a great morning/day/evening/night - whatever time it is for you, and that you keep on being the amazing person you are!
I adore this video. I am diagnosed with over 10 chronic conditions, and I'm not on any medications because I've tried virtually every surgery, procedure, and medication suggested by doctors and nothing has given me relief. That being said, I'm still going to school full time to get my degree. Its more difficult than I could ever describe some days, but I know life doesn't end just because I'm in immense pain! Everything you said was so well put, you've gained another subscriber girly! Keep being you.
I have been having pain for 2 years. Chronic and making me unable to live a life properly. I wanted to die for about 6 months but you have given me humbleness and thankfulness. You are so strong, bright and loving. Hope the best for you. thank you for sharing
So far my main pain annoyance is 'if you take x-med for y-years then you must be addicted to it & those x-meds can change you/your personality.' And I begin to think 'So now I am a better/worse human?' Whose pain is real/an excuse to continue using x-meds that cause 1,001 side effects that I must add to my list of everyday "joy." (I should be allowed to Rawr to whomever I want.)
Hi there! Me again! I have chronic back pain so I hear you on all of this! When I was 15 a doctor told me I need surgery on my spine and I was scared so I didn't do it then, but now, it's so bad that I lay in bed all day sometimes. I don't have money or insurance or support from neither of my parents, so it's something I just kinda live with and it makes me so grumpy sometimes. So I loved this video because it's so so so on the dot! Just wanted to share with you 💕 have a great day
I paused the video to say... And not that you will even ever see this but I'm I a very dark bad place with my mental health and it seems to be making my chronic pain 1000% times worse so I'm power watching your videos however I just took my anxiety meds and pain meds so I may fall asleep...
I just wanted to say.. Thank you so much for being you! I believe the world and TH-cam are a far better place with you in it..
Name the work of art ‘Daisy’
I was just going to say the same thing for the name.
THANK YOU! Especially myth 6 you spoke about-my sister is constantly telling me basic and usually incorrect information about how I should deal with my pain and it's so annoying to have to smile and nod at her so she doesn't get mad at me for not being grateful because she's just "trying to help."
Hey there Jo, You are truly an inspiration to all who suffer. You tell is like it is and that honesty is what will continue to give you and those around you in person or even on the internet. I know there used to be a great web-site for anything chronic, something like “But you don’t look sick?” It was of great help to me during my first years of recovery after an auto accident. I shattered my right heel and broke some bones, so the patched me back together with a metal rod and four screws. After I have heard your story I feel so very lucky. I too have had many horseback riding accidents, and cannot help but wonder if they are now contributing to my own chronic pain. I finally learned to stop asking “Why me”, and instead be glad that I had a wonderful grandmother who taught me early in life to overcome just about anything with time, trust in myself, love for myself as well as giving others time to understand (for those who could), to trust in those whom have proven to be trustworthy and finally love them with no judgements even when they simply could not understand. So I just want you to know I found you because I am meeting with an ortho surgeon tomorrow to get a consultation as to whether it is finally time to fuse my foot. My auto accident was in 2004, and in 2006 they did another same surgery to clean out the adhesions. My surgeon at that time was great. He told me I could already use a fusion, but since I was only 45, he asked me to “wait as long as possible since medicine was making great advances, and the surgery would need to be redone and it may not even take away my chronic pain. He was so great at showing me my MRI and letting me know that it showed that I had an ankle bone the age of a 90 year old woman, but whoever did my first surgery did a stellar job, and that I had so much arthritis - and this was my big take away from the entire MRI explanation - he said your arthritis is extensive and it can be sneaky, so listen to your foot as you go through your days. He said a simple wobble on a pebble stone could lead to excruciating pain - that would not show up for up to 4-5 hours. This I think is good info to share with anyone who breaks an ankle. I only say this because when he first spoke of the arthritis I said, but that should be no big deal, right? He said absolutely not Arthritis can be am able to manage okay as long as I don’t do much of anything. Some days just walking while shopping for gr
I bet your fur babies will learn to adjust their cuddles to protect you and to stay from under your crutches really quickly 🐶 I’ve got CRPS/RSD type 2 and doctors (especially pain management consultants) call it and other Chronic pain syndromes, THE suicide disease. Chronic pain is really isolating and because it never goes away its beyond exhausting which is very frustrating as I also have chronic fatigue syndrome so trying to balance my energy and pain levels is a full time, never ending chore. But I’m completely with you regarding fitness and staying active to help manage chronic pain and maintaining our well being. Another is being creative and using arts and crafts as a form of distraction therapy or a way to vent your feelings like you do with your journals. You nailed it regarding “helpful advice” 😁 one thing I can honestly say is, people that are in chronic pain will go above and beyond to research any possible way of helping dull their pain. We are experts of masking and putting on our war paint so that we try and go about our daily lives without whining or complaining. My number one dreaded question I hate answering is “how are you?” As to be completely honest would only bring on “helpful advice” or the “pity looks” which is the last thing you need so I’ve become very good at avoiding answering and deflecting. Having a great support circle and reaching out to support groups is so important as they really do stop that caged in feeling that creeps upon you when you’ve not slept for days. Great post Jo! 🤗🤗
i have migraines like you. my cervical vertebrae are surrounded with muscle as hard as bone. my wrists are slowly going numb from overworking them on guitar and from the increased pressure on my spine. my shoulders take on the weight of my whole head and neck because of this and they are riddled with knots and ache every day. i get mystery abdominal pains when a muscle attacks my lumbar vertebrae. i’ve seen many doctors and they all say that my anxiety and depression has caused all this and they refer me to therapy. i’m in therapy. i’m working on wanting to live live and being able to function as a person but no one has suggested a good medical solution to my pain. i love how you acknowledge the pain and the symptoms that come with it in this video. i cried when you spoke about the constant fatigue because i thought i might be the only one. i have hope for the future but i can’t help but worry that i will never get the help i need
It took everything I had left to go to the movies for my husband tonight. The theater was small and the only electric recliners they had were damn near on top of the screen so I had to sit in a non reclining seat. I was in so much pain. Then the theater was COLD.
I almost backed out of going. The most comfortable bra is an old sports bra and it caused more pain in my spine. I didn't back out but I REALLY wanted to.
I am always in pain. I've learned to live with it but I've become too tired to keep up the "I'm ok" act. I did it for everyone else, not for me. It is just too painful to put on make up, get dressed in real cloths, and do my hair so I don't.
I have disc disease and live in pain every day. Most days I act like I am ok. I am 34 and look healthy but when I get out my handicap hanger I feel like I need to explain myself. I've been in pain since I was 13. When its chronic you learn to cope and move on.
Another outstanding video again. I had one doctor at the va that said no such thing as chronic pain and treated me like i was faking it we had words not nice ones.I been deal with chronic pain for last 20 yrs in my ankle , back and that is why i decided to amputate my ankle i had 6 surgeries on it before this decision. Chronic pain led me to dark areas but family and docs have helped me a lot deal with it. I stopped taking morphine for my chronic pain and been cold turkey since i just been trying to find a solution for my pain i tried alot..There are a lot of days that i just want to lay in bed all day not move but having my dog has helped me get up and move even thou i am hurting.
20 years ago doctors didn't think Fibromyalgia was real. I was accused of lying for 10 years. It's a tragedy. So sorry you experienced that!
I also agree with disputing the "pain cannot kill you" idea beyond just mental health. In my case with CRPS (Complex Regional Pain Syndrome) that spread all over my body due to central sensitization and combined with severe fibromyalgia, chronic pain from reconstruction surgeries and synthetic graft implants permanently inside my ankle that use to be paralyzed, narcolepsy which causes musculoskeletal pain, etc. I was completely unable to care for myself before diagnosis and treatment. My limbs would shut down and it got to the point where I became mostly wheelchair bound and also started losing use of my limbs too. If I was alone or didn't have good health insurance and access, I easily could have died. It also started impacting my heart, lungs, etc. and I ended up in the ER 3 times and developed antibodies against my own blood vessels. I know my case is extreme but it can happen. When the body is under the most extreme chronic pain on earth (CRPS is estimated to be worse than amputation without anesthesia or unprepared childbirth but it's 24/7) the body is under so much stress that it can break down.
I know I’m kinda late to your videos but I think I came across them when I needed them. I suffer from chronic pain (autoimmune pancreatitis), I’m 37 and have been dealing with this for about 10 years.. I can’t tell you how many times I have been told “I should get off the narcotics because that is what is making me tired all the time”. It’s very hard for people to understand that I’m exhausted because I’m always in pain, and even though I am drop dead tired I can’t get much sleep because I am always in pain and it is this awful cycle. I don’t wish it upon anyone but it is nice to hear some else’s point of view that actually gets it because they have lived it.
Love this. I live with several chronic progressive disorders. One is Ehlers-Danlos syndrome (Chiari is very familiar with us EDS patients) which is a connective tissue disorder. My collagen is faulty which is basically what holds your entire body together including your blood vessels and organs. I have frequent subluxed joints (partial dislocations) and complete dislocations. Also all my joint are literally falling apart. My neck has crumbled and I’m facing fusion surgery of my entire c-spine. It also causes internal problems like a dysfunctional stomach and GI tract, which is so so painful. Pain is constant. Sometimes my pain is so loud it’s all my brain can process. ( I’m sure chronic pain sufferers know what I mean by this). It effects every single aspect of my life. I too have chronic migraines and the chronic all over pain that you were diagnosed with. And yes on the worse days or many bad days of excruciating pain, it can make you want to do the one thing that would just make it stop. Chronic pain is beyond understanding if you don’t have it. Sometimes I still think “how can I feel like this and not be near death? Is this really my life?” Can this really be real?” Because it’s like torture. It’s indescribable. And I agree 💯 percent with all you said. I’m sorry that you too have to endure this. Love to you! Your not alone!
It is EXHAUSTING to deal with chronic pain and it is EXHAUSTING to pretend to be normal. Just to hear someone else say it out loud almost made me cry. I've been in pain but pretending to be normal for so many years. I just don't have the energy for it anymore (sometimes). I actually will continue to pretend because there is no other choice.
How about naming her Blue Bell ! 💚🙂💚
This is so true. My gallbladder stopped working in July. Got it removed in October. Still experience some pain still to this day. Don’t know if it’s chronic per se but it’s still an active part of my life and will be for months to years.
Everything you said was on point and totally relatable. Chronic pain sucks and especially this misconceptions behind it.
I don't know the first name for the cow, but maybe the surname should be inspiration, which is what you have given me. I admire you, your courage, your honesty, your loyalty and I love your videos. I thank you so much. X
P.S. I admire your guy, he is a great man and also inspirational.
I think Bessie would be a good name. I’m very happy for you that Sadie is home!!! You must really miss your fur babies!
I'm glad I found your channel! I had the decompression surgery when I was 13 along with being diagnosed with syringomyelia (spinal cyst that can cause paralysis). Getting through high school was such a challenge. The misconception phrase I hear all the time is "You look great". It made me feel like I shouldn't be so jolly and lively all the time in order for people to believe that I was struggling. I didn't give in to that🙄
On a positive note exercise has helped a great deal for me loosening up and staying fit. Great video! 😊
BTW I am not sure how I came across your videos but I totally enjoy them and relate to what you have gone through. Glad I did.
Random advice about my pain is also a PITA. Even my doctor knows not to question it. He listens to what I have to say and doesnt project what he thinks I feel.
Thank you for sharing this. We have different kinds of pain, but I relate to so much of this. I came from a similar religious background and dealt with guilt from that for so long. I'm so grateful I found your channel. ♥️
Chronic pain sufferer here! Knee broken twice and left with slashing pain in the joint. Also congenital joint issues that go in the family. I use no pain meds because exercise helps so much, but in that i am very lucky!
I feel for those of us that actually need pain meds. I wish cannabis was legal everywhere. It helps for so many things! For me strong meds only caused brain fog and regret. But for some people the meds are a necessary evil, and others should respect that!
Only you are the expert of your pain. Remember that :)
Yes yes yes yes yes. This really hits home with me. If I look fine it means that for that microsecond I’m not overwhelmed with my pain. The other one I’ve come up against is that pain isn’t real it’s all in your head/brain. Arrggghhh. I know it’s my brain overreacting, but that doesn’t make it hurt any less. I have CRPS and have had it for 15 years. It doesn’t define me but it can definitely change the way I live my life.
I have chronic pain. I have tried everything nothing helps. I am despite to get help, but no one can help. It is exaughting.My pain is all over! I commented a few weeks ago one about deciding to have your foot removed. If you find it let me know. 😱 lol Nicole. Thanks for sharing,sometimes I think I am the only one that's lives this way! 🌹
I have had migraines for over 20 years tried different drugs and they all just make one of the symptoms better but the rest worse. I also have Becker Muscular Dystrophy which limits my activity levels so I haven’t found exercise helpful. I get a lot of joint pain due to lack of supporting muscle for my joints, constant feeling of cramp after the smallest level of activity. I found some painkillers effective for pain but created more of a foggy mind than dealing with the pain. I find telling people about migraines just gives people the opportunity to tell me they understand headache pain and it can’t be that bad. Telling people about the visual ticks just makes me sound like a real oddball. I term myself as someone with a life limiting condition and a functional pain sufferer
Im so sorry to hear this! Bless you, you hang in there. We're all here for you. 😊
Hi, great podcast ,you said exactly how feel. I have chronic pain for many reasons. The pain doesn't,t stop, so I do curl up in my bed! For some reasons.thanks for putting yourself out there. I really appreciate your kindness. 🌹😱
Belle. Would be my name suggestion. Have a great day Jo.
thank you for this, it helped me to hear you say things that I couldn't quite articulate as well to myself. I really agree with the point of working hard to try and fit in as a "normal" person.
Hi Jo, as a chronic pain patient I know these myths and misconceptions well. One of the things I hate is the advice that people want to give you. I can at least understand and deal with advice that might help even if I've heard it a thousand times (well mostly deal with it). Those people are at least trying to help you even if they don't really understand chronic pain. I do absolutely despise it when people give you nonsensical advise. Drinking a tablespoon of lemon juice is not going to cure my arthritis and make my pain go away under any circumstance. I could go on with other examples but I'm sure you have heard them as well.
I also hate the misconception that meds or surgery somehow make it all better. More functional yes hopefully, but not all better. I remember the very first thing I was told by my first pain management specialist, I can't fix your pain or make it go away but I can try and make it manageable. People just seem to think if you are being treated by a doctor it will be fixed and you can go back to being "normal" sooner or later.
I could rant, rave, and ramble on about every point you brought up as well as more points I could bring up and of course responding to all the responses etc. but it's a Tuesday so maybe not. I wish people were able to understand chronic pain and what it does to sufferers. I'd rather spend my good days having fun doing things and not spending a significant chunk of that time explain over and over that just because today is good, it doesn't mean tomorrow will be and that one good day does not mean that it is all good now. I'm getting tired and hurting so I should stop now but I do want to let you know I appreciate you and what you have said and thank you for sharing your videos.
😊 You just reminded me of a time that a friend of mine told me when I said the doctor said CRPS is not curable, just manageable that " she was going to look into this matter and research it because that wasn't good enough." I thought it was a bit funny that she actually thought she could figure it out over the doctors. 😂😂 I know it was well meant and she was trying to help. She still occasionally will tell me of a new remedy that she thinks she found that will make it all better. It definitely gets super annoying though when people do that.
As someone who has had chronic migraines for a decade now, I can say I relate to this so much. Especially the it’s not just pain and you don’t just get use to it ones. My migraines still significantly affect how much energy I can put into something bc I have to focus so much into just pushing thro and that’s exhausting. I wish I had the energy to do so much more but I simply just don’t.
Clarrissa the cow.
Bonnie the bovine.
Heather the heffer.
Moolissa. Of course.
Oh my gosh hahahah I adore this
Yes! This is my vote!
Um, Moolissa was a steer you know
No comment about pain from me but a comment about the sound in this film, I had a big trouble to hear you with that echo of the room combined with the background music. Greetings with a warm hug from Sweden.
omg...when you said people who see you up and out think your “all better or cured” makes me so angry ! I usually end up saying, I’m having a good morning and try to get away as soon as possible. But living in a country town of 1700 people, it’s frustrating.
GREAT video! Im going to share with all my friends. I really agree with everything you said.
You are wise beyond your age !
Thank you for this! I relate to the feelings of dealing with chronic pain while trying to be normal as in when havinging a part time job, being creative, dating ect.
I never thought about it, but it so does exhaust me.
Puppy kisses are the best kind of kisses
You should name her Elsie....as in Elsie the cow! You're probably too young to remember her, but it would be fitting.
Excellent video! Great points.
xxxx I love your smile .... I totally get it ......I have the same story .... I learnt very quickly that I have very limited energy. and I have to choose where I want to spend it to have enough for essential works (work and exercise).Imagine what happened? I can't plan for any weekend I cant book time to go out with others etc. etc. Yeah very isolating and lonely ...The losses that come with that are difficult. Worse is that even when pain and fatigue begin to also effect those essential ones ..... Also, very early I realised nobody wants to hear anything about pain. So I quickly learnt not to talk about it with anyone almost. A lot of people who dont have said maybe you think you have pain!! This one doesn't bother me at all. I don't have at all the energy to care about taking with people... Plus internet and similar people with similar stories are enough for me..... The difficulty is the pain and fatigue and seeing the losses and not knowing how long I can tolerate.
Gloria!!
I'm still in high school and the biggest misconception I see among the people around is the "you look great/terrible so you must feel great/terrible" this is rlly evident with teachers and though I don't deal with chronic pain I do deal with things that take these myths in different variations (cough cough menta...) Also, the cow painting looks really cool, Violet for a name...?
In addition to multiple sclerosis, or actually because of MS, I have a condition called trigeminal neuralgia. It's nickname is the suicide disease. Usually it's caused by a nerve being irritated or compressed by a vein..in my case the nerve has an MS scar plaque on it, causing it to misfire. The trigeminal nerve is the nerve that gives feeling to your entire face, neck and top of scalp. It usually affects the lower 2 branches that innervate your face from your eye down..so from your ear, along your cheekbone to your nose, all the way down to the underside of the jaw. As a nerve compression or irritation it can make you feel any and every sensation you can possibly feel. Some people get burning or cold, pins and needles or sharp electrical shocks, many people have jaw pain or tongue pain. It can range from irritation to feeling like you've been hit in the face with a baseball bat. I have days were it might just get that prickly feeling you get when you have a sunburn and a cold breeze blow, to feeling like all my teeth on that side (my keft, where my chronic migraine pain is usually most intense) to sometimes I wake up screaming at night absolutely certain I've been attacked because there's no way you can feel that amount of pain without there being blood and tissue damage...
But I have botox which has helped with this and my migraines immensely... but it has shown me that pain can kill you. I have had days of going hoarse from screaming in pain and having to white knuckle the minutes away.. I have thought to myself "if this doesn't stop I can't live..I can't take this amount of pain with no end in sight. I know that you've probably felt very similar things. Most chronic pain patients get to a point where just doing the processes required to physically keep yourself alive are so painful you wonder how long you can live that way before you just break and part of you never comes back.
Pain can't cause your physical death, but it can cause you to bring it about and that is every bit as serious as a heart attack or an organ failure.
For me, i notice when i'm having a *good* day. "Hey, my hands/back/etc don't hurt *as much* today).
For the painting... Milchelle, my belle! (Milch = milk in german)
If it were a baby cow, you could call it Calfe o'Lait
Have chronic pain i get what you're saying, people that don't have don't believe you are in pain. I hear you. Chronic pain is exhausting. I'm not sleepy I'm bone tired. Movement hurts. It takes so much more energy to get up and walk across the room. People don't understand, tell you it's not as bad as you think is all in your heard. They doubt know what it's like to be in pain 24/7 365. Pain can drive you to self harm, I've been there, planned the whole thing out, wrote letters to all my friends and family, got my pills, got bottle of brandy and drove to a park expecting I'd be dead in an hour. I was ready to take myself out. What kept me from it was my pets i was going to leave behind.
I'm an great actress and do what you do, but a move on, tell the lie that I'm fine and move away from that person. Get in my office and set alarms for when i can take the next dose of pain meds so i don't miss it or take it to late.
Ooh what about Rosie ??
I definitely get used to functioning with chronic pain, but I will never get used to the pain. It makes it seem to others that I am not in pain and so it is downplayed by friends and doctors. I had someone ask me the other day if I have tried b vitamins for my migraines. I had to bite my tongue and remain polite. I started seeing neurologists for my migraines at age 11! I have tried so many things in all categories, but I won't stop trying so generally I try to be open minded when someone makes a suggestion. Currently, CBD oil, celery juice, and yoga are helping a bit and I had a strong gluten connection to migraines so when I cut that out 12 years ago it helped a ton (also with my anxiety and panic attacks).
8:00 Hervé Villechaize the actor who played Tattoo on Fantasy Island lived with chronic pain related to his dwarfism. The pain grew worse as he grew older. Eventually even the strongest pain killers legally available were not enough.He started using less than legal drugs but even then he was still in pain every hour of every day. He eventually committed suicide. It was the only way to stop the pain.
I guess now is as good a time as any to share the news with you. You might remember I lost my cat Penny over a month ago. Well 2 weeks ago today another cute little cat came into my life. She literally came to my house and begged me to adopt her. I named her Dixie (I'm from the South lol). So that's my suggestion for the cow's name, Dixie! Or Penny... I would literally cry if you did.
Oh my gosh! That is so incredible - she chose you! That is such an awesome story Austin. She needed you, that is so amazing you took her in!!! I love Dixie and Penny!!!!!
@@FootlessJo if there was a way to I'd send you a picture of her literally at my door begging to come in. Within minutes of first meeting each other she was literally on my lap laying completely vulnerable on her back purring while I rubbed her belly. Like she'd known me her entire life. Like she knew how much I was hurting and how sweet a cat I had lost and how sweet a cat I needed.
Chronic pain CAN contribute to death. Not only from suicidal tendencies. I am an RN AND I live with severe chronic pain from Ankylosing Spondylitis, an autoimmune disease that attacks joints fusing them together, mainly the spine. It also can affect internal organs. But back to what I was going to say. My chronic pain has contributed to many health problems brought on by stress. My adrenals have shut down. Completely! So I have no stress hormone. Cortisol should course through everyone’s body when needed, for physical and emotional stress. If you don’t have any and you are under a very stressful condition, then it can become fatal. When I catch even a cold, I have minutes, to get extra hydrocortisone in me or I run the risk of going into shock and dying. If I am under severe level 8-10 pain, I have the same problem. First I become weak, then dizzy, and nauseated, all similar symptoms that you might feel in high level pain, except that my blood sugar drops, I become confused, and I can’t even think to take extra medication. I have to triple my dose. Usually in this state I will call my husband and he will remind me to take it. He won’t hang up the phone until I do. Otherwise I would just fall asleep and die.
Also it takes its toll on internal organs like the heart, stress and/or high BP,putting you at higher risk of heart attack, or stroke.These are issues for people who are stressing their bodies daily in chronic pain. And although not deadly, I ended up withPTSD following a c-spine surgery and it was in relation to severe uncontrolled pain and I ended up in a respiratory arrest. Now every time my pain ramps up to an 8 or higher, I have panic attacks. This in itself is not deadly but if I didn’t have my pain mediation, because the world thinks I am part of the “opioid crisis” then I would spin out of control. I have also thought about suicide when my pain is out of control. NO I am not suicidal.
This is one more reason the government and the public need to keep their opinions out of our medical charts when we take pain medication to function. IT contributes overall to our well being and our health. The big difference between people who take pain meds for a high and those like us with chronic pain with meds being controlled by a physician, the addicts take drugs which lowers their quality of life and makes them dysfunctional, whereas those of us in chronic pain taking it to survive, are actually becoming productive members of society again. Wee do need to get statistics right on the opioid epidemic. Stop looping chronic pain patients into the stats of heroin addicts who are part of the opioid statistics in order to make it much worse. It. Is horrible but you cannot take pain control away from patients. And doctors cannot feel at risk for losing their license for treating us. Thankfully a panel of drs and scientists are finally getting together to fight this all around the world.
You are so spot on with this.
Accept and adapt to encouragement of change
I oopsed and sent my comment too soon. I was trying to say that my surgeon explained that arthritis could be debilitating. My question to him was, well where are those commercials on TV. They make it look like all you need are 2 simple the over the counter meds, and you can then skip happily through your day. I also ended up with Type 1 Diabetes one year to the date of my auto accident. I had told my doctors I felt we were missing “something”. Their response was always, you had a terrible accident which could take 2 years to recover from or you may develop more complications and never fully recover. This was not news I was willing to accept. But none of my doctors did any bloodwork. This is another big take away moment of advice for anyone who IS on heavy meds and/or recovering from anything - get your bloodwork done. Had we done so we may have saved my pancreas. I was finally diagnosed when my liver was jaundiced and I went to the ER thinking I simply needed meds and would come on home. Well, five days later after they removed my gall bladder they said I did have diabetes, and in fact, none of them could believe that I had even been able to walk in to the ER. My blood tests showed that I should have been in a coma. So that is much more than enough for now. I am sure by now you have named your cow but I think Cowchella (like the mooosical festival every year out in CA). Or it could be for CiaoBella (Hello and Goodbye Beautiful, and of course my first hit which is a nickname I often use for our sweet - Missy Moo Who. I love puns and even making up words to use when I cannot find the right ones. Hey, I just had a great thought for a good answer to those who mean well when you are in pain and they say “but you don’t look sick!!” Just give them a smile and say, “ You are so right!! Crazy, isn’t it??” Or “Who knew pain could be so invisible?” Okay, signing off with a big huge thank you for all that you have done for your self, family, and internet fans. Oh, just remembered I just finished watching Unbelievable and thought of good ole Olivia Benson and her entire crew who heal so, so many victims of abuse. You my dear just need to keep of the good fight and know that you are loved and supported by all.
I shared my story a few videos back so Ill spare you all again lol. I have been on Hydrocodone/norco and Lyrica for 15 years now. Thank god for pain management doctors. Ill be on them the rest of my life Im pretty sure. It makes life more manageable. I take between 2-4 7.5-325s a day. Usually 3 but sometimes it takes 4 to beat it down. It takes my pain from an 8 down to a 4ish.
I have to say that my pain tolerance has increased over the last 7.5 years. My shoulder was dislocated twice within a year and then over the next year it would sublux and that was way more painful then the 2 full dislocations because it would swell up so quickly that it would be stuck in that sublux for a while - on was 3 days before the swelling went down enough. So then I had surgery on it and after the doctor said that it was worse then the MRI had shown. So at least that helped justify my pain. But then after surgery it got worse for about 2 years before it started to get better. And then there are the set backs. I would be working out and push myself too far and the pain would be back. Now over the last 8 months I have seen the most improvement. Of course since everything in your body is connected I now have to deal with pain down my spine because I will notice that sooner then in my shoulder because I got so used to the pain in my shoulder that it has to hurt more for me to really notice it. But if something else is hurting that will over power it because it's a part of my body that doesn't have to deal with pain on a regular basis.
This is so awesome, I can relate to all of it!
I'm so glad you can relate - but also, really sorry if you suffer from chronic pain!
Another myth about chronic pain: Just because it's "all in your head" doesn't mean it isn't real.
If you feel pain, regardless of the cause, it *IS* real pain.
Exactly. The same goes for mental illnesses. The head/brain literally controls the entire body. Why would something being "in your head" make it any less real or important?
@@r.charlie Guy goes to the doctor. Doctor says, "The good news is, it's all in your head. The bad news is, it's brain cancer.
Great video! and you are right about what you said.
One misconception that I dislike is, “it’ll pass, like you’ll get over it.”
Exercise is great for body and mind.
One thing I struggle with from both directions is like, how much to talk about it? My instinct is to want to try to help make it go away, being around people in pain almost hurts me physically. I also know that sometimes talking about it just makes it worse. But then by NOT talking about it, I feel like it appears I don't care? Does it depend on who it is?
I actually had a pain management physiologist tell me if I didn't talk about it at all, my pain would be all better. I never went back to that place. I hadn't really thought about that before. If I'm having a really bad day, I'm going to speak up so that my family understands why I am grumpy and not doing anything but sitting there or sleeping. That phsycologist said I shouldn't tell them that it's a bad day because it makes them feel bad for me.... I'm not looking for sympathy, I just want them to know. I don't complain non stop of course about having chronic pain and I rarely bring it up to anyone besides my husband or doctor (lol). I can say that in the beginning of when they were trying to find out what was the reason why I had the chronic pain, I probably talked about it more than I should have with friends or even my mom. So that's a really good question that you have.
I feel this is a tricky question!! I would rather people know I’m having a bad day and therefore not worry about me being grumpy etc. Some of my colleagues now can just tell when I’ve had no sleep and am struggling. On the other hand I like to try and “forget” about it and be distracted from it by working and trying to continue with a “normal life”. If people are continuously asking are you ok etc that brings pain right into the forefront of my mind which obviously then makes it worse. I think the answer is to try and know that person and be there for them if they need a vent but otherwise treat them normally!
I deal with chronic pain, and I prefer that I be the one to bring things up. If I’m in extra pain, I’ll let you know. I like not talking about it because it makes me feel more normal 😊
Well damn, that's confusing 😅 But I get it. I guess it's just my male instincts getting in the way. If I can't protect people from a lion or hunt them a deer, I'm useless 🤣
When in doubt, just ask, "how are you feeling today? Do you want to talk about it?" If not, offer to do something fun like watch movies.
A myth I have heard is that pain is always there to tell you that there's something wrong, and so taking painkillers only serves to mask the problem. It's infuriating because I know there's something wrong, and I am doing all I can to make it better, so it really isn't necessary to suffer more than I have to so my body can continue telling me about a problem I am extremely, acutely aware of.
oh gosh, church can be so toxic. mine was too, and it's such a guilt trip, being told you just don't have enough faith, because that's their excuse for everything. you don't understand why God does this to you? Have faith! Your life sucks? your fault for not believing enough! you have a mental condition like deperession or anxiety? don't take medication, just have faith!
ugh. The branch of Christianity i grew up in wasn't THAT tough on praying things away... but it still guilt tripped me a lot.
Yes I didn't realize it was so many,
I still notice my pain all the time but it's so normal for me that if I woke up one day with no pain I'd have a panic attack and likely call 911
I don't really have chronic pain but regularly get neck pain that leads to really bad headaches. It really takes away the joy in so many things because the only thing I can think of is the wish that it goes away. Sometimes they last for a week or longer and I am just there waiting for it to go away. I don't really want to interact with anyone when I've got them. But at least I know that I can do something against them when they get to bad and that in the end it really is my own fault because I am to lazy to train and strengthen my neck and shoulder muscles - I do know that it works since there already was a time where I did work on it. So I think that I can at least somehow understand how much it can effect every bit of one's life.
Oh and... Emma :)
I have to use wheelchair sometimes due to chronic pain, fatigue, and syncope (fainting). If anyone sees me get out of my chair (like to grab something at the supermarket from a high shelf) or sees me without my chair, I'm suddenly "faking it" because I "don't look sick"
Thank you ! YES,YES,YES !
My first thought was Elsie but Petunia would be a good name, too. I think you need a name you can use when you need to talk to your new cow friend.
What do you know about Pain Neuroscience Education (PNE)? A rehab therapist talked about it at support group. Pain sucks and continues to pollute the body.
Just came across your channel. I super love it and your personality ! You're wonderful . So glad and enjoying your videos. Wondering what name you chose for your prosthetic ?
Jen from Hamilton Ontario
:)
Question about the last myth. If somebody says "hey you look good!" Or "wow it seems like you are doing better", can't that sometimes not be motivating ? Because you are still feeling horrible, but maybe a bit less horrible than the week before. So i would think that getting a compliment about it, would make you feel better.
That's a really good question Dries. I think maybe for some that could be motivating, but I know for me and others who deal with chronic pain or illness, it isn't - because at the end of the day, I know it isn't going to get better...it fluctuates, but (and I don't mean to sound negative saying this, its just currently reality) there isn't any hope of a cure in sight. There is no "better"...so I might appear to be fine, I might be having an okay day, but I'm never alright as in without pain. When people comment on how I appear in regards to how I feel without me having offered up the information first (like, if I say, "hey, today is a good day, I feel okay" and they comment on that, that's a different story), it always feels disheartening/discouraging.
@@FootlessJo it's the old "but you don't look sick" thing.
Perfectly said!! Thank you
Myth 8 is real life! I wish people could understand this.
Olivia would be a cute name for the painting 🥰 I looooove cows 🐮
Cowrola. As in, Carola but with cow, get it? No? Oh...
It's terrible I know hahaha but it would be fun!
I use to say I am fine and all that but now when I hurt I hurt so now I say hug soft in pain or not in pain and go for the big hugs and all but I did the I am fine I am ok all of it until that one day when I hurt from top to bottom and wanted to give up and had but a shining little face came in my room and stopped me twice that God for my daughter she is my life literally but just say hey pain
I just had an add for a prosthetic leg before your video ^^
Obviously these comments are not getting to you so that's fine I'm going to try and do the surgery myself