Discussion How many of you are here because of a chronic pain disorder?

[LJ85]

I started experiencing severe middle and upper back pain when I was 21 year old (which totally sucks) and it's plagued me throughout my adult life. In the last 2 years, the pain has expanded to my hips and knees. It's a really bitter pill to swallow knowing my entire adult life has involved physical pain while pretty much everyone else I know has thrived in a pain-free existence. Personally, I've come to realize that my physical pain really cut down on my potential in life.

 

[bearbrikk]

I am 20 and I have a few conditions that cause me to have chronic pain. I am not here because of that tho. I really think mental problems can not be compared to physical chronic illnesses. However, due to my chronic illnesses my mental health suffers immensely.

 

[LaVieEnRose]

Yes, I've dealt with one for over 10 years now, starting when I was also 21. Completely out of the blue. I have detailed the symptoms elsewhere so I don't want to get into that again right now. It was the worst thing that ever happened to me. I suffered indescribable trauma from dealing with It all alone without any understanding or sympathy from anyone else (because it is an invisible condition). Having such a huge chunk of my life not be understood is so incredibly painful. Dealing with doctors was probably the worst part of the whole ordeal, as many patients will probably agree. I have long exhausted those avenues and given up on getting any real understanding on the part of physicians. So I'm just supposed to deal with the physical and psychological pain all on my own for the rest of my life.

I'm definitely very embittered about it and really if I'm being honest, resentful and angry at the rest of humanity for not having to deal with this pain.

It's definitely astounding how badly our bodies can fail us. I have a relative who also developed a mysterious malady in his early 20's. He cannot tolerate temperatures greater than 60 degrees (F) before he overheats like an old laptop. He cannot type on a keyboard for longer than a few minutes before his joints start shrieking in agony. Unlike me his condition is still acknowledged by professionals and people in his personal life but it still must be very isolating since the symptoms are still completely subjective and he has to watch all the other young people live their lives freely.

There are so many painful things I would rather have endured than what I did and that I would be willing to do to undo what happened.

 

[KuriGohan&Kamehameha]

Yes, I've dealt with one for over 10 years now, starting when I was also 21. Completely out of the blue. I have detailed the symptoms elsewhere so I don't want to get into that again right now. It was the worst thing that ever happened to me. I suffered indescribable trauma from dealing with It all alone without any understanding or sympathy from anyone else (because it is an invisible condition). Having such a huge chunk of my life not be understood is so incredibly painful. Dealing with doctors was probably the worst part of the whole ordeal, as many patients will probably agree. I have long exhausted those avenues and given up on getting any real under standing on the part of physicians. So I'm just supposed to deal with the physical and psychological pain all on my own for the rest of my life.

I'm definitely very embittered about it and really if I'm being honest, resentful and angry at the rest of humanity for not having to deal with this pain.

It's definitely astounding how badly our bodies can fail us. I have a relative who also developed a mysterious malady in his early 20's. He cannot tolerate temperatures greater than 60 degrees (F) before he overheats like an old laptop. He cannot type on a keyboard for longer than a few minutes before his joints start shrieking in agony. Unlike me his condition is still acknowledged by professionals and people in his personal life but it still must be very isolating since the symptoms are Stoll completely subjective and HR has to watch all the other young people live their lives freely.

There is so many painful things I would have rather have endured that what I did and what I would be willing to do to undo what happened.

In a few decades when medical technology inevitably advanced, I think the world at large will be forced to come to terms with the unjust discrimination against the invisibly ill and those whose conditions have yet to be elucidated under a specific, respected diagnostic label.

Through history, similar maltreatment has always occured towards people whose conditions and struggles were not acknowledged by the majority. Before MRI was invented, patients with multiple sclerosis were treated like hysterical malingerers, simply because there was no way to image neuronal lesions during that time. The sheer cruelty displayed towards such a large group of innocents due to the hubris ignorance of the masses can be hard to fathom, and yet these attitudes are still unfortunately alive and well in the modern era, in our so called best time to be alive in human history.

People are afraid of what they don't understand, and I think that few people have endured the rigamarole of having symptoms for years and years, whilst being fobbed off by doctors and not taken seriously. Because there seems to be an irrational dichotomy that illness must strictly be either acute and temporary, or terminal, despite the fact that rates of chronic conditions are rising around the globe, spurring epidemiological anomalies in wealthy countries that are supposed to have top notch biotech research and healthcare.

I remember learning about the invention of hand washing practices in a lecture. When a physician suggested for the first time that perhaps bacteria and pathogens could persist on the skin and needed to be washed away, the general public treated him like an absolute lunatic. If I recall correctly, he ended up dying in an asylum. Simply because he dared to challenge the status quo of the time and to advocate for more hygienic practices, it was regarded as insulting to the dignified, esteemed status one held as a physician- you were meant to be immune to sickness, germs, and those oh so human faults.

I think chronically ill people experience a similar discrimination now, especially many of us on the forum. When you know your body and you've known for years that something isn't right, you're crying out for help, and yet no one listens to you. Or if they do listen to you and believe you, they shrug their shoulders, and admit that they don't know what to do. I think persistently being ill disrupts a just worldview that modern medicine is infallible and our health is within our realm of control.

I read a quote once that said pain is the fifth vital sign. Does everyone believe this, though? Some religions and cultures (especially with 我慢 mentality) place an emphasis on enduring pain rather than absolving it. I think this is bullshit. Suffering is not a virtue and none of us should have to suffer with life-limiting pain with no reprieve, especially when there is ample money to be dedicated towards researching new treatments for misunderstood ailments.

You deserve better than this sort of maltreatment, though I know that sentiment does not remove the deep mental wounds that are inflicted on account of years of disbelief, lack of acknowledgement, etc. I think that aspect of chronic pain and illness is a huge, unspoken component of why we suffer so much.

Patients with more recognized ailments that are perceived as serious and worth empathy from others tend to have better outcomes, social support is pivotal and depriving people of that is just cruel, plain and simple. When people don't understand, they should make an effort too. Especially medical staff, because they are getting paid for it.

Feeling anger towards others is completely understandable in this situation. I've had similar thoughts myself, that I wish I could make some simulation of what I'm going through, let people experience it for a day, and then see if they come out the other end of it still full of judgement and misunderstanding, or with a better appreciation of how suffering isn't always visible to the naked eye. It is deeply unfair how some people are blessed with great health throughout their youth and then the rest of us aren't.

I started experiencing severe middle and upper back pain when I was 21 year old (which totally sucks) and it's plagued me throughout my adult life. In the last 2 years, the pain has expanded to my hips and knees. It's a really bitter pill to swallow knowing my entire adult life has involved physical pain while pretty much everyone else I know has thrived in a pain-free existence. Personally, I've come to realize that my physical pain really cut down on my potential in life.

Back pain is the absolute worst. From the symptoms you're describing, it sounds a lot like you have ankloyding spondylolysis, an autoimmune disease that attacks the spine and also the hips and knees in some people. Only immunosuppression treatment can manage this condition if traditional anti-inflammatories aren't enough, and many doctors misdiagnose it. Have you been tested for the gene associated with AS yet? I only mention this because I recently learned about it and am shocked how under diagnosed it is despite being a significant culprit of back issues in younger people.

I also have had chronic back pain for years that has gotten worse, amongst a constellation of other symptoms. My spinal scan showed evidence of significant degeneration and inflammatory changes that could potentially be ankloyding spondylolysis, but I don't know for sure yet. I have a host of other problems too, been facing the consequences of birth defects that weren't discovered until adulthood including tumors and a structural defect of the brain which doctors don't take seriously because there's basically no research about it.

There hasn't been a day in over 6 years where I haven't experienced some sort of discomfort at best, still many of my symptoms like fatigue are a 24/7 deal. I also feel robbed of life, and people often say I behave more like an elderly person than a 24 year old. Although it feels like a completely foreign experience to a lot of young people, you aren't alone here on this forum. There are several younger adults here suffering from chronic health problems, and we understand what you're going through.

 

[ferrie]

It's not my biggest reason for being here, but my chronic pain is definitely a factor. I'm 23 and have had a daily headache that does not go away since I was 16. In October, it will have been 8 years since I have been pain free outside of a few instances of being given effective pain medication in the ER. Doctors have been unable to determine what causes the pain and at this point are refusing any medication other than psychiatric. I've had multitudes of tests done, and the only thing that has come up has been neural lesions that should be benign. The headache frequently spikes into a migraine, for about 20 migraines a month, and I experience pain in my extremities and lower back as well. The levels of pain make living a normal life impossible, and I've lost everything that made dealing with the pain worth it.

 

[LaVieEnRose]

It's not my biggest reason for being here, but my chronic pain is definitely a factor. I'm 23 and have had a daily headache that does not go away since I was 16. In October, it will have been 8 years since I have been pain free outside of a few instances of being given effective pain medication in the ER. Doctors have been unable to determine what causes the pain and at this point are refusing any medication other than psychiatric. I've had multitudes of tests done, and the only thing that has come up has been neural lesions that should be benign. The headache frequently spikes into a migraine, for about 20 migraines a month, and I experience pain in my extremities and lower back as well. The levels of pain make living a normal life impossible, and I've lost everything that made dealing with the pain worth it.

Migraines are one half of what I have been dealing with so I can sympathize. I don't even recall what a normal head feels like anymore though that also means that the pain is lessened by my having grown accustomed to it...

 

[LJ85]

Migraines are one half of what I have been dealing with so I can sympathize. I don't even recall what a normal head feels like anymore though that also means that the pain is lessened by my having grown accustomed to it...

Ugh same. I get these really pounding headaches behind my eyes. Sometimes it feels like my eyeballs are going to explode from the pressure. I'm not sure if it's from the back pain, too much screen time, or something else. Like everything else in my life, doctors are stumped.

 

[LaVieEnRose]

In a few decades when medical technology inevitably advanced, I think the world at large will be forced to come to terms with the unjust discrimination against the invisibly ill and those whose conditions have yet to be elucidated under a specific, respected diagnostic label.

Won't matter for me sadly.

When you know your body and you've known for years that something isn't right, you're crying out for help, and yet no one listens to you. Or if they do listen to you and believe you, they shrug their shoulders, and admit that they don't know what to do. I think persistently being ill disrupts a just worldview that modern medicine is infallible and our health is within our realm of control.

I reached out to everyone around me. It took a lot of guts and honesty on my part to open up about something so intimate, scary, and confusing and I was still shut down almost universally.

Lol. I wish I could have gotten some acknowledgment even if it was accompanied by an indifferent shrug. That would have been meaningful to me. It is really shitting when you're told that nothing is wrong while symptoms are raging furiously during that very conversation (unbeknownst to the then because you know, invisible).

I read a quote once that said pain is the fifth vital sign. Does everyone believe this, though? Some religions and cultures (especially with 我慢 mentality) place an emphasis on enduring pain rather than absolving it. I think this is bullshit. Suffering is not a virtue and none of us should have to suffer with life-limiting pain with no reprieve, especially when there is ample money to be dedicated towards researching new treatments for misunderstood ailments.

Pain evolved to alert organisms to potentially lethal danger. So it feels like a betrayal of natural law to suffer in pain on and on and on without natural death ensuing. Or in other terms, like a glitch or a bug (in which case, can suicide, which is considered to be unnatural, be said to be fixing that naturally-occurring glitch by bringing about what nature says should happen)? I don't think suffering is a virtue. Suffering is a concept that has no relevance in how the world operates so why should we give it undue consideration to our detriment?

You deserve better than this sort of maltreatment, though I know that sentiment does not remove the deep mental wounds that are inflicted on account of years of disbelief, lack of acknowledgement, etc. I think that aspect of chronic pain and illness is a huge, unspoken component of why we suffer so much.

It has been really awful.

Patients with more recognized ailments that are perceived as serious and worth empathy from others tend to have better outcomes, social support is pivotal and depriving people of that is just cruel, plain and simple. When people don't understand, they should make an effort too. Especially medical staff, because they are getting paid for it.

Unfortunately, as I have said before, for people to care even a little bit there has to be at least some modicum of understanding. Something they can't perceive at all isn't liable to get that. And my family wasn't good advocates for me in that are. Because again, they didn't understand just the same. And they still don't. If no one cares about your pain, how much caring are you obligated to reciprocate?


As I'm sure you feel similarly I don't feel that doctors are all that invested in their patients' health when things are unclear. Perhaps that is not entirely their fault as they have so much to deal with, but if things are unclear in my experience they're not too interested or motivated to pursue the lines of investigation and enhance their understanding. So I have had to come to my own understanding after applying research to my results. They don't want to help but they sure don't like that though!


It's really too much and I should have been dead within the month since onset, not 10 freaking years. But easier said than done of course...and our own adaptability gets in the way too in a sense as we grow so inured to the presence of something that it stops being as a strong a motivation for our self-delivery as you would think it would serve as.

 

[AveMori]

I started experiencing severe middle and upper back pain when I was 21 year old (which totally sucks) and it's plagued me throughout my adult life. In the last 2 years, the pain has expanded to my hips and knees. It's a really bitter pill to swallow knowing my entire adult life has involved physical pain while pretty much everyone else I know has thrived in a pain-free existence. Personally, I've come to realize that my physical pain really cut down on my potential in life.

Have you ever tried Kratom? It helps me at least alleviate some of the pain and is pretty safe to consume!