Rather than simply asking "does anybody else experience this?", I thought it'd be more interesting to open the question up and ask everybody to describe how you experience pain if you're inclined.
The reason I ask is I'm always flummoxed at the oncology office when they ask me about pain and want me to rate it on the 1-10 pain scale. Pain can be such a complex experience that I don't know how to boil it all down to a number. I can describe at least three different ways I've experienced pain.
To me, "classic pain" would be when I pulled my hamstring. There was a distinct injury event, and I could point to exactly where it hurt and say "this is a 10". Of course, I've redefined 10 several times since then, so it would only score about an 8 today.
My bone mets in my ribs frequently hurt, but most of the time it's only when pressure is applied to them. I usually sleep on my side and stomach, so usually a combination of pain medication and carefully positioning myself to limit the amount of body weight resting on the ribs allows me to get a pain free night's sleep. How am I supposed to score that in the doctor's office when it's not hurting me at that moment?
The most insidious pain is what I would call "chemo pain". It's a rather diffuse, low-grade pain, sort of like a sunburn but on my innards. I frequently don't experience this as "pain" per se, but as an all-over sensation of discomfort and cramping. I can't find a comfortable position on the couch. My belly feels vaguely like I have a bad case of gas. This morning I was literally moaning and sitting on the couch in a sort of fetal position, then started crying, and yet I couldn't say exactly what hurt. I took an oxycodone (after trying a number of digestive remedies without relief), and a short time later it felt like everything relaxed a bit, and I could easily find a comfortable position to lay down. Later on I went out for a two mile walk and near the end of that I was aware of low grade pain in my digestive tract due to the activity.
It truly feels weird to me. I regularly say that chemo and radiation has sunburned my colon, and other times that chemo is liquifying my innards, but despite such drastic descriptions it doesn't feel like "pain" to me, at least not the way a pulled hamstring does.
So how do you feel pain? There must be other variations out there.
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I can't relate to the treatment pain you have experienced. To this date I haven't felt pain from the disease or the treatment so that will be something for me down the line. However, I have experienced gout and will use that as my 10 for all future comparisons until something more painful happens to relegate it to a lower #. A gout attack is a throbbing pain radiating through my whole body that would not allow me the slightest respite or the ability to think of anything but the pain itself. The first few bouts were the worst and I learned better how to deal with it over time. I think based on the lifestyle changes made since my dx occurrences will remain in my rear view mirror.
That sounds pretty bad! Not everybody gets significant pain. My father in law died of kidney cancer and took all of one opioid pill during the entire experience.
I had one gout attack. Worse than a root canal. Colchicine - ancient herb for relief. Air movement from a ceiling fan or the weight of a sheet caused intense pain.
I think you just did a great job. There are indeed many different kinds of pain: inflammation, pressure-sensitive, stabbing, shooting, localized, diffuse, organ-related, joint, nerve, skin, etc. But pain is always phenomenological - it is a subjective mental experience. An fMRI cannot measure it. It will always be impossible to precisely relate the degree of pain to the cause. I may experience a broken leg as a 10, requiring major pain meds, while you may experience it is a 5, requiring only some Tylenol. That's why the scale is so useful - it allows me to communicate my subjective experience of the degree of pain to others. It also creates a quantitative measure that can be tracked over time and with different therapies.
Pain is individual subjective experience to a great extent. Degree of stoicism is variable among people, among ethnicities and among races. There are tribes who will complain of "some "pain when we in more evolved nations will call is "level 10 pain"They designed pain scale to try to get some objective sense out of one's subjective experience . Because there is no other mechanical way to measure pain. I wonder how bone pain feels as I have not experienced it yet.
You may not get bone pain. I think part of it may have to do with the type of bone lesions: blastic (common with prostate cancer, typically not painful) or lytic (less common, more likely to be painful). I have a mix of lesions, and only some of them hurt. My ribs may hurt because I cracked them just before diagnosis.
Have you every bashed you shin really bad? I'd describe my bone pain as similar to a bashed shin on the second or third day. Generally tolerable, but you really don't want to bang it again.
I have done X Rays and CT scans 3 times this year ONLY to rule out Osteolytic lesions.. Also did biomarker test..Urinary collagen telopeptide (NTX) which tells about extent bone resorption (corrosion) which also was in low normal. That assured me that their are only Osteoblastic mets (now inactive) Also using COMB protocol to maintain bone density...Which includes Vit D3+K2 , 4000 Units a day, Strontium 640 mg/day, DHA 2 tabs, Magnesium 25 mg/day and Dietary Calcium...along with weight bearing exercises. In a research published in 2012, COMB protocol had equal results to Biphosphonates in preserving bone density.
Great question! Obviously, to some extent, it's like good art: I know it when I feel it. But just as good things in life are subjectively valued and experienced (art, music, food, etc.) so are the bad things. The notion that a numerical scale can be "objective" across individuals seems absurd.
Many (like my father, and wife) have what seems like a very high threshold for most physical pain, but at the same time get highly bothered by certain types of pain that seem trivial to some others.
In the dentist's chair as a kid, it was the ANTICIPATION of pain, rather than brief bursts of pain itself, that caused more suffering for me. Same for getting shots.
One thing I have noticed over the years is that certain types of sharp pain cause intense anger: when I hit my head, a stream of expletives ALWAYS follows (normally it's just one particular expletive repeated many times).
I can relate to that "bad gas" cramping in the fetal position as being particularly disturbing. Unlike the sharp pain of hitting your head or cutting yourself, where the pain is initially intense but then slowly subsides, the other kind of ongoing, gnawing internal pain gives the impression (in the moment) of possibly growing worse over so many hours as to be intolerable.
Of course, I always DO tolerate it. But then, I consider myself as one who has never known "real" pain in the extreme sense that many (here!) have experienced it. Something to look forward to, unfortunately, as I saw both my parents experience the days-long torture of a slow death by the complications of cancer. (I can comfort myself by considering that other options are on the table, even though I don't expect I will take any shortcuts.)
I think you're onto another aspect of the issue when you refer to "real" pain. A large part of the pain experience is the story we tell ourselves about it. I ran a marathon in 2011, and at the time it was the worst pain I'd ever felt. Every muscle hurt, and I couldn't walk down stairs. I had to sit on the top step and scooch my butt down one step at a time to get from the bedroom to the kitchen. But I completed a marathon. The pain would be temporary and was a happy reminder of one of the best days of my life.
The only pain worse than that was when a tumor blocked urine flow from my kidney. That pain was not going away on its own, and it's a reminder that my cancer had returned in dramatic fashion. There was no softening that pain with a happy memory.
Damn, that is not just the key to how we experience pain, but how we experience EVERYTHING, how we experience life itself!
What is frustrating is that even as I understand that, I seem to have little control of the narrative, as it changes with my mood, hormones/neurotransmitters, diet, sleep, interpersonal interactions, weather, SEASONS (especially), etc.
I think if we could control the STORY about our pain, we could mostly control how we experience it... but I imagine some forms of pain are beyond even those who have mastered the story-telling of the (over)thinking mind.
Great response! Every time I get asked about the scale of pain what does that really mean? Unless you say 9 or 10 no one does anything about it anyway. For the past 8 years I have been very fortunate to not suffer high pain, though I’ve broken ribs, my neck recently, which has been painful, pain from Chemo thigh I try hard to look at it that there are people who suffer from pain far worse than I do.
Most of the pain I’ve had so far with PC feels like excessive pressure put on a particular area. For example, I had some hip pain before my current therapy. It feels like the tumor wants to expand and take over a space that doesn’t really exist. So it seems to press on a nerve a then pain shoots from my hip down to my knee. It hurts most after trying to exercise and doesn’t go away with rest. It’s a pain that subsides only with medication. It doesn’t feel like a ten but it just keeps on giving so it wears me down, makes me tired. And then I can’t sleep unless I take opioids.
Fascinating. I've had a lot of pain that does improve with exercise, which makes sense as endorphins are opioids produced by your body. As for rest, some mornings I'm virtually pain free, but then the pain builds through the day, and it's that constant, low level pain that really grinds my mood down.
I was diagnosed with a rare brain disorder some years ago. It causes stabbing pain in my head and eye. The pain is present 24-7 it just varies. Some days it is tolerable but many days it feels like someone has a drill bit and they are drilling into my eyeball, while pouring acid on it and ripping the eyeball out of my skull. Sometimes the "drill" goes through my eye out the back of my skull. Until I had this disease, I never knew what pain was. Now I understand why some people take their life with this condition. All you can think about is wanting it to stop. So to answer your question, when your pain consumes you and you cannot not focus on it for any reason, it's probably an 8-10.
This certainly has made other pain seem more minor. Even stuff like pulling my back out seems like a walk in the park. It also has changed my perspective on everything and made me enjoy the few fleeting moments I have when I can think straight.
What you experience is exactly what makes me say I don't think I have ever experienced "real" pain. It always makes me wonder: would I be one of those people who take their life with this condition?
But at the same time, that question often allows me the bliss and gratitude for knowing I am not experiencing that NOW, even if I may one day. It is so hard sometimes to just BE... here... now... without any regret of the past or worry of the future. Thanks to God that you get the positive change in perspective, as it would seem all to easy to focus on the negative!
If you're feeling pain, you're feeling "real" pain. Pain is sort of like prostate cancer. Some have been detected early and cured with a prostectomy. That doesn't make their anxiety about subsequent scans and PSA tests any less "real" than somebody else's who is metastatic and castrate resistant.
Yikes! I can't imagine what that's like, or more precisely, I don't want to even try imagining what that's like. Is there any treatment or relief for the condition?
I am always flummoxed when they ask me to give a number to my pain, and I usually answer "it doesn't come with a number on it", and sometimes I just refuse because the question confuses me so much. Recently I did something to my arm and shoulder when falling; I'm worried that it wasn't taken seriously enough because I didn't give the pain a high enough number (finally having an MRI Wednesday to assess possible tendon/ligament damage).
I always feel like I'm lying or making a mistake when I do give a number. Maybe I should manage the subjectivity by giving them a high number if I really want significant treatment and a low number if I don't think I need it. But that seems like lying, too, even if in a good cause.
There are other ways to rate pain that you can then map onto the 1-10 scale. For example, give a low number to pain that you aren't aware of if you're not focusing on it, all the way up to 10 for pain that is so bad it's all you can think about. Middle numbers go to pain that you're constantly aware of but you're still able to function and think of other things.
What I've found very useful is the "pain behavior" scales normally used for people who can't verbally communicate their pain. When I was sitting on the couch with my head it my hands moaning, that's a sign I was in some pretty significant pain even though it felt low grade and diffuse to me personally.
This is spot on. When you have pain that takes all your focus and forces you to cry out, it's a higher number. Or pain that isn't relieved by sitting down/laying down/or changing position.
Very interesting (and unfortunate) post on a topic that I’ve thought much about over the course of my 4 year journey. I’ve come to the rather philosophic conclusion that there are circumstances in which the amplitude of a nerve’s pain signal is simply “pegged” at 10 out of 10 (no “volume 11” here!!) and this overwhelms all sense of “where” it comes from and any thought on how to overcome it.
It has happened frequently enough with my bone mets over the last 4 years that, when I encounter this “pain as existence, existence as pain” phenomenon, I have sometimes found myself unable to move through what I call the three “E’s of pain”: endurance, evaluation, and escape. It seems then that only endurance means anything, even unto altogether losing my sense of time during these episodes.
Well, I hope it is taken in the spirit it was given, i.e., only as a philosophical meandering. I am...well...okay. As we all here strive to be, I think. Cheers - and I mean that.
My rib pain (7) and sleep adjusting is a challenge at times. Joint pain after over doing can be a 6 . Have Oxycodone which I take 1/2 pill usually once or twice a week. So life is good
My experience when asked about pain,at worst, this was for trial eligibility was to give it a rank of 6. Little did I know there is some definitive pain scale and a ranking of anything above 5 ? means I'm treating my pain with opiod based drugs or similar.Which immediately ruled me out as eligibility was for volunteers having little to no pain. In the end I complained about it as I was totally unaware that such apain scale existed and the fact was that if I did have pain I'd fix it with paracetamol.
So now my pain if I do have any is always no higher than 4 !
For awhile I was writing a book about this but I stopped writing a few years ago because I just felt it was not interesting, not believable, and boring.
I think of pain level 10 as when a woman gives birth. I have rarely gotten even close to that. I think of my metastatic cancer pain as in the range of 1-2.
Pain is caused by growing cancer tumors. It takes years for the tumors to get large enough to cause pain. The cancer cells subdivide in a method that is somewhat mathematical, in a doubling calculation, (2x2=4, 2x4=8, etc). It's called "exponential". Prostate cancer cells subdivide about every 45 days. A single prostate cancer cell can grow into a tumor the size of a grain of salt after one year, the size of a grain of rice in two years, the size of a pea in three years, the size of a walnut in four years, the size of a basketball in five years, and the size of a basketball court in six years, but only if left untreated. (When I consider this, I always think of Steve McQueen who had 70 pounds of tumors removed just before he died.) And of course the body naturally fights the cancer cells constantly with T-cells, which search out and kill cancer cells throughout the body. Isn't that amazing! I am still astounded by the capability of the human body to heal itself! How do itty-bitty cells know those things? Some foods, like lycopenes, tend to increase our T-cells.
I asked my RO five years ago how do I know if a pain is caused by metastatic cancer. He said "it does not go away." So if a pain felt like a muscle strain but it did not heal or go away, month after month, I assumed it was from a tumor that was growing and putting pressure on a nerve.
Every time they ask me at the doctor's office if I "have pain" or if I am "currently experiencing pain", I just say "no" because the pains caused by metastatic tumors in lymph nodes are only painful when pressure is applied to them. I have experienced many, perhaps a dozen over the past eight, almost nine years now. They have "gone away" thanks to Lupron treatment and other means, (lycopene consumption such as spaghetti pasta sauce, which made them "come and go" over several hours) I told my RO this and I think the RO misunderstood me and did not realize that they were mCA that was growth slowed by lycopenes and/orkilled by Lupron treatment.
First example was a pain on my tailbone, at the very tip. I only felt that pain when I went bowling and sat on the hard plastic chairs in the bowling alley. And it was not unbearable pain, just a sore spot that lasted months, but only when pressure was applied. It was then accompanied by a pain in my rectum. I interpreted it as tumors related to my biopsy, because I did not have surgery, just radiation. I mean the biopsy was the only possible explanation because that was the only time that my prostate was traumatized by needles pulling apart the malignant tissues and through the rectum and near the tailbone. That pain was in December 2011, 3+ years after my biopsy, and subsequent radiation therapy, in 2008. In early January 2012 I began Lupron treatment with Casodex. By end of January the pains were "gone". I mean gone forever ever since. Gone, thankfully. Still, today almost 9 years later.
After that short episode, I began to have similar pains in my lymph nodes in my back. Pain like strained muscles, but only when pressure was applied. For e\xample if I twisted my spine over 45 degrees I could feel pain and pinpoint the location. One of them, near left shoulder blade, grew to a considerable lump, something like 2 inches diameter and 1/8" deep. Likewise, the pain seemed to "come and go" and only with pressure on it, and only for a few hours with lycopene intake and ultimately they were"gone" after Lupron/Casodex. Multiple similar spots on my back came and went, over the years. I controlled the pain with lycopenes, and during my Lupron treatments, they disappeared completely. Some went to my lymph nodes on my skull, behind my left ear. A few still remain, although with slight pain, mostly whe pressure is applied.
One is between my shoulder blades, next to my spine. It seemed at one time to grow into my spine and between the vertebrae and it is still there. I learned to treat it with lycopenes and heat. I sometimes heat it with a heating pad, sometimes with a very hot shower, and what works best is a 2.5 lb weight that I used to heat by boiling in water, then cooling to under 140 F, then lying on it directly on the pain. Nowadays I use a portable electric heater to heat to 140F, which is easier than the boiling and waiting method. Or I sometimes use my solar heater which can get up to 200F in the bright sun on a winter day. But of course, over 140F is harmfull to normal cells, so I do not go there. All cancer cells die at 106F, so heat treatments are temporary, reducing tumors but not eliminating them, it seems. Sometimes the heat treatments cause pain that lasts a day or so, very similar to the tumor-pain, but the tumor pain fades away for days and sometimes weeks.
Heating pad makes sense as it is soothing and increases blood circulation in the area. How Lycopene helps? Can you tell in what form you use Lycopene and how much...and what results you have got in pain control with this food item? Well. .the heated weight seems scary to me...BURN Risk !
Thanks for your detailed description but I respectfully disagree with your description about the speed with which cancer grows. There are multiple forms of prostate cancer, and while the most common is slow growing, the more aggressive types can grow very quickly. I personally had one fill about 1/3 of my bladder in only six months.
Tumors can also cause pain by releasing inflammatory substances, by pressing on nerves, and (in my case) blocking off urine flow from the kidneys.
I studied rate of growth of several cancers and that, 45 days is what I got for prostate cancer. It might have been old information. Lately I am getting aware of more aggressive types of prostate cancer. I think mine is personally not aggressive. I used to think it was the "exponential" growth curve that caused aggressiveness. The bigger the tumor, the faster it grows. But that may be wrong, as there are apparently several different types of prostate cancer.
Yes, I have the rare forms of intraductal carcinoma and neuroendocrine. In the latest biopsy report, there was a mention that 85% of my cells were in the process of dividing at the time of the sample. A sampling of the mutations in my cancer show that a gene that is supposed to limit growth is broken, and that there are extra copies of the genes that make proteins associated with growth. I don't really understand the genetic report yet, and not sure if I want to.
Like I said I never go above 140F and even then just for short periods. I never burn myself. With hot showers I try to keep under 115F.I do get some scalding (skin turns red). But I am careful not to burn. Sometimes it hurts a bit afterwards, but hot showers I count to 25, sometimes 50 seconds. With the weight I sometimes sleep on it and it gradually cools over a ten to twenty minute period. With heading pad it seems to take hours. The body trys to maintain 98.6F by blood circulation.
As for the lycopenes, I have found the best source to be V8 juice, low sodium. That is easy to find and easy to drink. I try to take 1/4 cup every six hours or less. But most effective is pasta sauce, in a spaghetti dinner (or lunch) made with plant-based meat. I also try to get catsup in whenever I can. I put catsup on fried potatoes. I also mix mayo and catsup for a salad dressing often. Most every meal I try to get some lycopenes. It doesn't take a lot, but they only seem to have effect for the four hours or so in the small intestine, soon after eating, until they pass on down. I put catsup and raw tomatoes in chili from a can. Amy's or other vegetarian chili is good. Also tomato based sauces such as taco sauce on tacos, thousand island dressing, and last but not least, lycopene pills...I empty the pills into cooking like on fried potatoes, in chili sauce, on veggie burgers, and in spaghetti sauce. They say if you consume over 100 mg per day your skin can turn orange. I think I am consuming in the range of 50 mg per day, cooked, and always with some kind of oily food, like potato chips or even a drop of vegetable oil in the V8. The mayo with catsup is soybean oil with tomato and such.
You have turned into "lycopene Guy" I am also "lycopene, Resveratrol, Cauliflower, Turmeric, Ginger, Onion, Garlic and more...Guy !" We can Get Along !😊
But ..Still Not ready to try your "burn the beast" therapy.
Because there is no "pain-o-meter" we have the absurd 1 to 10 pain scale. Ten is easy: most (but not all) heart attacks, childbirth, passing a kidney stone. Ten is where you can do nothing but writhe in bed and push the morphine pump button. I have never (yet) had a ten.
Your question is good because it recognizes the emotional content of the pain experience. A toothache at 3 AM is not the same as a toothache at 10 AM. Alone, dark, no place to go for help and no distractions from the pain.
When I see a patient sitting and talking to me and telling me her pain is a "13" I know that no one has ever bothered to explain to her the pain scale.
Your pulled hamstring hurts for sure. But you know that in two weeks it will be sore, you might favor it but you will be running again in two more weeks and fully healed in another two. But not a ten by the intended definition of the analog scale. GREAT discussion topic. Very pertinent to PCa where the _expectation_ is pain in advanced cases.
I find that "background" pain is tiring (waiting 3 weeks for the root canal procedure), whereas 10 pain (blocked bile duct or eardrum about to rupture) is incapacitating. My brain only pays attention to the loudest pain signal. Pain can be a good warning to stop and not to do ____ again. Half my right leg is numb and cannot give me warning of injury.
Whenever I think about assigning a number to pain I'm reminded of the horrific injuries suffered by our troops in the field. Being blown up by an IED and set on fire in your Humvee ranks at a 10, everything else pales in comparison.
My pain scale starts at 5-that causes me to take an Advil or Tylenol. 1-4 I just tolerate. 10 was a kidney stone-I simply passed out to avoid the pain. 8-9 caused me to go for physical therapy when my back pain went down my butt and leg. I lived with 7 for too long. The other major pain is not on the scale. It's when my wife says: "Pain? You want me to show you pain?" Yeah, no meds for that.
The number (1 – 10) is an important factor for the insurance pre-approval process regarding treatments, medications, etc. And little do the insurance people understand “pain,” as it seems as though they want a focused situation like a “hammer blow” to a part of the body, or gunshot to the ass.
Then upon taking a pain pill for a #10 situation reducing the pain to #3 ... you must always report the non-medicated number situation (sharing that the treatment brought a #10 down to a #3).
Also some doctor’s notes obtained by the insurance do not contain significant information ... like “falling” and how often, being injured, or limiting activity. Also the systemic effects from pain. Often the insurance never receives the descriptions of pain, and the consequences of pain (leading to related health issues, or QOL situations.
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For your doctor’s appointment take in with you:
• A written description of the locations of pain (focused or diffuse), the level of pain, consequences, occurrences (scope and sequences), etc.
• What you have done to manage pain that doesn’t work (a cascade of medication strengths, timing, etc.)
• How it affects functioning ... sleep, mobility, social, caring for self (cooking, washing, dressing, chores), affects other physical or health issues, etc.
• The goals you have for treating or dealing with pain (reducing or eliminating pain).
• (Also download a diagram of the body ... preferably a skeleton [for bone pain]... from Google images.) Shade in or circle the areas of pain on the diagram with a written caption for each the areas.
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Ask that your efforts ... the “written” descriptions and diagrams be scanned in as apart of your medical records.
So often after leaving an appointment, you realize that your conversations were weak, not satisfactory, or not comprehensive in communicating the pain: locations, severity, effects, or consequences
(Two of my doctors thought it was a wonderful addition!!! to understanding “my pain” and related issues, and they actually used it to understand, form or modify a treatment plan. Others were not interested (handing the notes back to me), leaving me feeling that the scope of my situation was not satisfactory understood [and upon checking, the insurance never received the crucial description of the pain or even other issues]).
i.e. I had reported to the doctor that I had fallen three times, hurting my wrist and elbow when a surge of pain folded my knees, and then down I went. The insurance company never received that information ... only that I had “experienced severe pain.”
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