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As my regular readers know, I’ve suffered from significant middle-back, shoulder, and knee pain for many years. Eighteen months ago, I started developing low back pain. In February, it got so bad that my pain specialist ordered an MRI. When the radiologist said I might have a tumor, the pain specialist ordered a follow-up MRI. The second MRI didn’t show a tumor, but it did show “degenerative changes of the lumbar spine.” Perhaps, these changes were put in motion when I broke my first lumbar vertebra in 2013.
Over the years, I’ve had to give up hiking, biking, camping, and even neighborhood walks, but I was somehow able to do yard work. Yesterday, just getting my tools out for yard work left me in so much pain that I came indoors. I can still do light housework, but it has started leaving me winded. My internist suspects a heart problem, so he ordered a number of tests, the last of which is scheduled for tomorrow. I wonder if the problem could simply be caused by holding my breath because of the pain.
I have been in worse pain (pain that felt like being stabbed in both shoulders with ice picks), but I’ve never been so nearly devoid of hope. Oxycodone helps, but getting enough oxycodone is impossible. Because I’m at the top dosage of oxycodone, the pain specialist suggested morphine or Dilaudid, but I hate to go to a new drug because of the time it would take to reach an effective dose. A major fear of mine is that the anti-narcotic forces will persuade legislatures to deny narcotics to people in chronic pain. If that should happen, I would have to either live in utter misery or shop the Dark Web for Fentanyl. Because Peggy is opposed to the latter, I would be in an impossible situation.
I stayed awake for my prostate surgery last month. When I told the anesthesiologist that the surgical area felt fine, but that my back was killing me from lying on the hard surgical table, he gave me dose after dose of Fentanyl until I was completely free of pain for the first time in a long time. If I could feel that way everyday, it would be worth dying sooner, because the life I’m now living hardly qualifies as life.
I wrote the above yesterday, not knowing if I would put it online (I have come to share very little of what I write, either online or through correspondence). When I got up this morning, the following all but bubbled out of me, and I think I might put it and what I wrote yesterday online. Here is what years of living with chronic pain has been like…
A toothache that is horrible at times, and less horrible at other times, but is always there. Feeling like a physical and emotional weakling. Feeling that the person I used to be has gone away, and I don’t know where to find him. Not being able to enjoy things. Not looking forward to things. Not liking anything or anyone. Blaming myself for being in pain and for letting it rob me of a happy life. Not being able to concentrate or remember things. Being edgy, and feeling like a fool for being edgy. Suspecting that the world is full of people who are in more pain than I but are handling it better. Avoiding social engagements. Knowing that people will pity and avoid me if I tell them how much I hurt.
Looking forward to doctor’s appointments because doctors are friend substitutes who won’t reject me for telling them how I feel. Drawing-in on myself so I don’t have to deal with challenges. Dreading being in even more pain and losing even more mobility. Being awakened throughout the night by pain. Structuring my life around pain-avoidance. Wondering how I am going to pay for the household jobs that I can no longer do for myself. Tensing my body because I’m afraid to relax. Holding my breath because breathing hurts. Feeling like a cripple, an invalid, a has-been. Feeling sorry for Peggy because she married a loser. Wondering where my friends went.
Feeling like I’m losing my mind. Wondering how much longer I can hold-on. Worrying that pain and medicine will shorten my life. Feeling that if I were stronger, I wouldn’t need so many drugs. Blaming myself because I haven’t found a way out of the pain. Knowing that no one on earth understands what I’m going through because I look like a normal person. Wondering if people think I’m making it all up. Wondering if people consider me a boring whiner. Believing that I should avoid people because no one would want to be around me anyway.
I won’t even try to wrap this up with a satisfying conclusion. I will instead put it online pretty much as I wrote it.
27 comments:
I’m so sorry. I too live in constant pain but here the doctors are
Already stopping the opioids.
Between thenME/CFS, the fibromyalgia, the scoliosis, two damaged discs, fractures in the top half of my spine causing
Neck pain and the shoulders I can hardly breathe some days
I totally get that you would gladly swap pain free years for longevity
I used to be able to run this place all on my own. Now there are days I can’t even make the bed
I tell my hubby I’ll hang on until I’m n longer needed to baby sit small children and then I’m checking out
I figure I’ve got about seven years to endure left
You are not alone. Hold on. Do not give up. Most often help is just around the corner.
Do you have someone to advocate for you? With you? Two hands and two heads lighten a tough task, and yes, I speak from experience. Just do not give up. Have you sought help outside your area? Hang on. Hang on. Hang on. Someone, somewhere has the answer. Hold on. Hanging is harder and risky.
Sending hope while caring in Texas.
Explore this site. You never know.
https://www.acellortho.com/blog/when-chronic-pain-becomes-too-much
Another I have heard good things about: https://my.clevelandclinic.org/health/diseases/4798-chronic-pain
Last one: https://www.practicalpainmanagement.com/pain/other/chronic-persistent-pain-can-kill
Be well!
I think you have said all of this at other times and I have never managed to find an adequate response that suitably acknowledges your suffering.
I'm so sorry you have this to deal with and I think all of your responses are quite normal, not neccessarily true, but pain will lie to a person.
I'm sorry you have such pain, Snow. It ruins lives. I wish we had better means to control or stop pain. Get what you need, if you can, to feel better.
I am so sorry. Chronic and unrelenting pain is a beast. A beast which impacts every aspect of your life. I do hope that you can be given drugs which give you a life rather than an existence again.
To publish a raw post can be therapeutic. You are not looking for sympathy but some understanding and of course pain relief. Having experienced long time debilitating pain over the last eighteen months, thankfully much better now but still there, I would taken anything at times for some relief. I think you are more likely to die prematurely from pain than you are from drugs that give you some quality of life.
I had not expected this many comments since I'm not visiting blogs much anymore. I am enormously touched--thank you.
"I too live in constant pain but here the doctors are already stopping the opioids."
I understand that sleeping pills can also be very hard to get in Australia. I rely so heavily on them that if I had to choose between Ambien (the most popular one here because it doesn't stop working after a few nights) and narcotics (which tend to keep me awake), it would be a tough choice, so to think that you can get neither makes me very sad. I will mention that there's an OTC sleeping pill that works well for me for a few days at a time (when it stops working, I allow five days to go by before taking it again). The US brand name is Unisom and the active ingredient is doxylamine. Doxaylamine is simply an antihistamine, which makes it more likely, perhaps, that you can get it in anti-drug Australia, yet it really does help me get to sleep and prolong how long I can stay asleep before the pain wakes me up.
There's also a non-addictive, non-narcotic prescription drug for pain that you might be able to get. It is called Gabapentin (aka Neurontin), and while not a sleeping pill, it induces sleep (and causes vivid dreaming), the problem being that a person quickly builds a tolerance. I take a small dose nightly, and a huge dose when I'm desperate for sleep. In real terms, this means that I take 600 mgs (at once) most nights, and 2400-2700 mgs (at once) on occasion. I truly don't know how harmful this might be, but I'm not seeing an obvious downside, and going without sleep is, of course, health-destroying in itself. You need to be careful with doing this by experimenting so you won't knock yourself out for WAY longer than you meant to. Have you seen an MD who specializes in the treatment of chronic pain? Are steroids of benefit? Does wearing a brace help the pain from your scoliosis? Are there avenues for help that you've yet to explore?
...What I hate about these self-righteous anti-opioid advocates is their claim that there are other effective ways to treat pain. No doubt there are for patients with mild pain, but, having tried far more alternative treatments than I can even remember, I have certainly disproven to my own satisfaction that they either don't work at all or don't work very well (turmeric was my latest attempt). Of course, I haven't tried absolutely everything, some things being unaffordable, and other things being too stupid to even want to try--homeopathy strikes me that way.
cont.
"I tell my hubby I’ll hang on until I’m no longer needed to baby sit small children and then I’m checking out "
What is his reaction? I knew of some of your problems, but you stay so active that I truly hadn't realized that things were that bad. I think of suicide a great deal, there being times when I just want to race out and do it. Yet, I have Peggy and the cats to think of, and I also have a few blog friends to consider. If I should ever feel that I really and truly needed to kill myself, I hope Peggy would support me in it because I wouldn't make the request lightly. Like you, it seems, I don't want to die, I just want to stop hurting.
For those Australians who can no longer get narcotics, what alternatives are offered? When I google "how to live with unbearable back pain" the following sorts of things come up from a respected US health advisory site: https://www.webmd.com/pain-management/guide/11-tips-for-living-with-chronic-pain. Their suggestions fall far short of the enormity of the problem, and narcotics and sleeping pills aren't even listed, the implication being that they're not worth trying.
I see that Australia has assisted suicide laws, but you have to be terminal to avail yourself of it. I understand that there are places that have more intelligent laws, and that they will accept people from other countries, so that's something to keep in mind. My US state of Oregon had America's first assisted suicide law. The drug used here is a barbiturate, so buying either that or Fentanyl illegally would be something I would consider if I were determined to die, was ineligible for the government program, and didn't want to simply shoot myself, something that would utterly horrify Peggy. Please know that I'm not promoting suicide by any means. I am simply trying to be useful to the best of my very limited ability. After all, I can't even help myself to live anything approaching a normal life.
More later...
I am in constant pain with my knee. I'm so sorry you hurt so much Snow!
As of yesterday all of our States have assisted suicide laws. However the Territories (in one of which I live) do not. And cannot. The Federal Government passed a law refusing them their local governments the right to even consider it. Our current Prime Minister (who I hope is deposed tomorrow) has said flatly that he will not repeal that law. Which is one of the multitudes of reasons I hope he and his party lose the election.
That's the insidious thing about pain...it's invisible. Unless you have some sort of gaping wound or covered in bruises no one can tell. Being in pain all the time is a terrible way to have to live. I hope you get the drugs you need but I just read that 2021 had the most overdose deaths from fentanyl and meth, over 100,000 for the first time ever with fentanyl causing more deaths than any other drug. Because of this doctors are reluctant to prescribe anything that actually works. I've read you long enough to know your constant struggles with pain. I hope you get some relief.
"Do you have someone to advocate for you? With you?"
Yes, although I advocate very well for myself--having gotten well beyond my youthful illusion that doctors know everything and never made mistakes. However, Peggy and I nearly always go to doctors' appts together. She's a retired BSRN who asks good questions and helps me remember what was said, and I try to do the same for her. I find it easier to advocate for her and to think of questions for her than I do for myself, and I think she might say the same about me, it being emotionally easier to be the guardian of someone else's welfare. Peggy also says that she receives better treatment when I--as a male--am along, and that this is true whether the doctor she is seeing is male or female. Fortunately, doctors have become more user friendly over the years, so I don't even remember the last time that a doctor seemed to have a problem with being expected to talk to both of us.
Have you sought help outside your area?
Do you have someone specific in mind? I live in the second largest metro area in Oregon, which is 100 miles from Oregon's largest metro area (most of the people in my huge state of Oregon live in the 45 mile wide by 110 mile long Willamette Valley). Oregon doctors got their training throughout America and even some other countries, so I think it unlikely that a distant doctor would have access to a treatment that Oregon doctors don't know about. Of course, anything is possible, so I would be willing to consider what was offered.
"Hang on. Hang on. Hang on. Someone, somewhere has the answer."
Thank you. Although I stay pretty low emotionally, I'm not seriously considering suicide except as a later option, particularly if I should feel myself becoming senile. That said, after years of wanting to believe that a pain-free life awaited me--years in which I got progressively worse--I've lost faith that there is. After all, I've seen a heck of a lot of doctors, undergone a heck of a lot of treatments, done a heck of a lot of web searches, and tried many, many alternative therapies, the result being that I've become increasingly skeptical and pessimistic. It's also statistically true that the longer pain continues, the less chance there is that it will ever go away. It seems that a neural pathway is like a path in a forest in that the longer it is trod, the deeper rutted it becomes.
"Sending hope while caring in Texas."
Since you're anonymous, please always mention Texas or give your first name so I will have a sense of whom I'm talking to. I'm well-acquainted with Texas, by the way. My wife finished high school in San Antonio (she and I were both born in Mississippi); I have a half-brother in Beaumont; and mine and Peggy's best friends from college live in Houston. I've also spent enjoyable vacations in southwest Texas. If you scroll down the list of comments, you'll come to a lady named Ellen who lives a bit north of the Houston metro area.
I will look at the links which you so kindly sent, and I appreciate the time you spent running them down for me.
More later...
"I think all of your responses are quite normal, not necessarily true, but pain will lie to a person."
I agree that chronic pain and the resultant depression will both lie, but knowing this doesn't enable me to separate truth from falsehood since I'm not knowingly lying to myself. There is also such a thing as self-fulfilling prophecy, and I very much worry that I have so come to frame reality from a place of distress that I have lost the ability to otherwise experience it.
"I'm sorry you have such pain."
Thank you, my friend and fellow cat adorer. For a couple of months now, I've been seriously considering starting a blog about cats, and have gotten close enough to it to start working on my first post. Perhaps, you might want to write a guest-post sometime about yourself and the work you do. The trouble that I'm having with this blog is that--since the coming of Trump--I have increasingly come to focus on the negative. Sometimes, doing this makes me feel better--as with this post--but writing about Trumpism itself just seems to increase my alienation from his supporters and their Republican Party as a whole. I am working on a Trump-related post that I will eventually put online, but I very much hope that it will be the last one I feel compelled to write.
"I do hope that you can be given drugs which give you a life rather than an existence again."
Due to my recent heart and lung tests, I'll soon go on Prednisone for 20 days. I'm told that pain reduction is one of its side-effects, so I can't wait.
"You are not looking for sympathy but some understanding"
I don't know how to distinguish between sympathy and pity, but you're right in that I have no desire for sympathy. Peggy is very fond of a TV show entitled "Call the Midwife." On that show there is a doctor, his wife, and their two daughters. The doctor's wife is forever looking at one sufferer or another with an anguished expression that I interpret as sympathy/pity, and everytime I see that expression, I absolutely want to slap her. Understanding and acceptance mean everything while, as understandable as they are, sympathy/pity distress the person who is experiencing them, so sooner or later that person is forced to withdraw. It has even been proven that such people tend to either avoid entering the helping professions or else experience burn-out when they do enter them. I worry about my pain specialist in this regard. I first saw him 20-years ago, and over these many years he appears to have become so sad, tired, and beat down by listening to suffering people all day everyday that I wish I could somehow comfort him, but of course things aren't set-up that way.
More later...
Can't know what to say except I'm sorry to know you're in such pain and I hope you find some relief. I sometimes wonder if doctors take pain seriously enough.
"I am in constant pain with my knee."
What is the source of the pain, and what are you doing about it? My left knee bothered me for 30-years before I gave up on hyaluronic acid injections, corticosteroid injections, and debridement surgery, and went for a full joint replacement. I'm glad I did, although replacements click, don't bend as well as the real thing, and wear out if heavily used.
"I hope he and his party lose the election."
I truly hope you're happy with your new PM--in America, a heavy election turn-out means that half the eligible people voted, whereas in Australia, it means 93% of eligible voters cast their ballots. I don't have a good idea of how deep the partisan divide is where you are, but in America, the only way it could get worse would be if we started shooting one another. No one here lauds freedom more than Trumpian conservatives but only for those who agree with them about guns (they LOVE guns), abortion (they also LOVE wee little babies from the moment of conception on, even if the baby's father is also the baby's twelve-year-old mother's father), fair elections (but only if conservatives win--otherwise the election was obviously stolen), secular rights (America is a Christian country, and all you God-hating atheist bastards can damn well leave), euthanasia (God so loves us that he wants us to suffer until the bitter end), voting rights (we must protect freedom by denying the vote to niggers and liberals), immigrant rights (northern Europeans welcome; brown, black, and yellow people not so much), vaccinations (God made our immune systems, and Jesus is the only vaccine necessary), mask mandates (how dare you liberal whiners tell us that we have to think of anyone but ourselves), sex education (it just encourages teenagers to have sex, although the states without it have the highest teen pregnancy rates), biological science in schools (God made Adam in less than a day, and then made Eve from Adam's rib), LGBT+ rights (the Bible says to stone them all), history in schools (teaching race-based oppression makes white people feel bad, so fire anyone who teaches it). Etc.
"I just read that 2021 had the most overdose deaths from fentanyl and meth, over 100,000 for the first time ever with fentanyl causing more deaths than any other drug."
The claim is that if your dentist gives you a half-dozen 5 mg Vicodins after an extraction, you'll soon be lying dead from shooting up with Fentanyl-laced heroin, yet of all the millions of people who take legal narcotics each year, relatively few become addicted. As I see it, the problem is that we live in such a shallow, purposeless, alienating, jaded, violent, materialistic, misery-producing society that our young people will take any damn thing that promises momentary respite, and that a great many of the dead didn't even survive long enough to become addicts due to the near universality of Fentanyl being added to other drugs, among them drugs that look like such prescription drugs as Vicodin and Percocet. Yet, jail is the only treatment that conservatives stand solidly behind, and don't even get them started on the advisability of needle exchange programs or government control to insure the purity of street drugs, their simplistic answer being to deny narcotics to everyone. Of course, anti-narcotic sentiment isn't all the fault of conservatives, a great many liberals also buying into the belief that if legal narcotics were made illegal, there would be no addicts, and therefore no market for black market narcotics.
"I sometimes wonder if doctors take pain seriously enough."
Many doctors tend to focus on what they can cure. Chronic pain is hard to treat, and the longer it continues, the more persistent it becomes. Also, there are patients who pretend to be in pain in order to get narcotics. A great many doctors despise addicts, and reach the point that they deny narcotics to everyone so they won't have to deal with them. My internist of 30-years reached this point. During her nursing career, Peggy developed a contempt for addicts which is common among nurses (especially in L&D, which is where she spent much of her career). The problem is that the system makes it sufficiently hard to get narcotics that legitimate sufferers feel forced to be as manipulative as addicts.
snow, I come close to understanding. I have back pain that I now think will not go away no matter what I do. I had a laminectomy and fusion just a year ago and there's been improvement: I can now lift and carry and twist and turn. But my standing is limited and the pain is never far away. I made a decision less than a month ago that I am not going to seek additional medical solutions. I don't take narcotic meds so I'm guessing your pain is worse than mine, but I'm now doing what I can with Tylenol and I'm most often doing what I want to do and can do for limited pockets of time. I might garden all of 30 minutes. I try to walk at least a half mile most days. My turtle approach to the things I love and to chores works for me. I've learned that pain all by itself is immobilizing, how just because of its physical limitations, but it also affects every part of me emotionally. I'm kinder to myself knowing and accepting that damn reality. I hope there is some way you can enjoy at least some moments. love love kj
"But my standing is limited and the pain is never far away."
My current pharmacy has chairs, which are a great help because standing still for any period of time is torture. It bothers me that many pharmacies don't offer seating despite long wait times.
"I don't take narcotic meds so I'm guessing your pain is worse than mine..."
If you think narcotics might enable you to function better, you might consider seeing a pain specialist?
"I'm now doing what I can with Tylenol..."
I'm more afraid of acetaminophen than I am of narcotics, so I avoid narcotics that come with acetaminophen built into them. For example, I take my oxycodone straight rather than mixed with acetaminophen (Percocet). OTC painkillers do nothing for my pain.
"My turtle approach to the things I love and to chores works for me."
My pain is so out of bounds that the "turtle approach" isn't enough to allow me to work.
"I've learned that pain all by itself is immobilizing, how just because of its physical limitations, but it also affects every part of me emotionally."
In the face of most of life's challenges, a person remains able to focus on other things, but pain can become so constant and consuming that this becomes all but impossible.
"I'm kinder to myself knowing and accepting that damn reality. I hope there is some way you can enjoy at least some moments."
I can sit in my comfortable rocker and enjoy watching PBS documentaries and recorded programs, and I can sit in my bed and read with a degree of comfort, but all physical activity has become a problem. When I get up each morning, I take enough oxycodone that I can comfortably sit at the computer for a few hours, but that doesn't leave me with enough oxycodone to significantly reduce pain later in the day. I'm now out of oxycodone (until tomorrow), so my back is screaming at me with every word I write. I have come to envision the pain as an enemy that is breaking through my defenses and driving me further and further into a corner.
Such a straight from the hip, honest post about the reality of severe pain on a daily basis, I think it will help others who read this to not feel so alone even if there are no actual answers.
"Knowing that no one on earth understands what I’m going through because I look like a normal person." - I have an idea sweetie, I have a pretty good idea. I often say I wish pain showed up on the skin as a kind of glow: orange for some, cerise for very bad, red as Rudolph's nose for excruciating, because unless people are limping, or using a walking aid, unless they howl all the time (boring for everyone involved eventually), people think we're just fine because we look fine. Incredibly frustrating and affects their potential empathy towards us too. Xx
"I often say I wish pain showed up on the skin as a kind of glow: orange for some, cerise for very bad, red as Rudolph's nose for excruciating..."
If you could wave a wand and make this happen, would you, and what would consider the good points and the bad points of it? Off the top of my head, I think there would be situations in which it would be a very useful (like when seeking pain relief, or sharing information with a loved one, or trying to explain why a given task is too much to handle), but there would be other situations in which showing vulnerability would be a terrible idea (like when surrounded by unsavory characters, applying for a job, asking for a date, or trying to make a dinner party enjoyable for everyone). I would worry that it might so make pain the focus of one's life that other people would stop asking for what they needed or sharing information about themselves. Then too, I wonder whether, ideally, you would like for it to also provide information about non-physical pain, things like rage, grief, dread, fear, hatred, and suicidality. Clearly, it would need to be impossible to fake for sympathy, drugs, or to avoid responsibility, and it would no doubt inspire a wide range of reactions, with some people becoming grievously desperate to help and others withdrawing in horror.
"...unless people are limping, or using a walking aid, unless they howl all the time (boring for everyone involved eventually), people think we're just fine because we look fine."
Yet it's also true that I sometimes dread being asked about it. Having the subject come up as a natural part of an intimate conversation is a good thing, but having it sprung on me at a social gathering or upon encountering someone who I haven't seen in a while leaves me at a loss because my situation subject is oftentimes tedious, impossible to describe, and talking about it leaves me feeling nonplussed and vulnerable. Even in a medical setting, pain so defies description that the best providers can do is to ask me to pick a number between one and ten to describe how much I am hurting. The provider then makes a note of the number I chose as if it were as precise and meaningful as pounds or milligrams when the truth is that it's utterly subjective. Because I find it impossible to pick the "right" number, I instead try to choose one that is high enough that I will be taken seriously, but not so high that my listener will wonder if I'm a woos or a liar. Being asked about chronic pain is different from being asked if whether a transient headache is better yet.
I'm sorry that you are going through this, Snowbrush. Living with constant pain is something one can neither describe nor vent about all the time. But it is. It always is. Hugs!
I am sorry you are going through this. Constant pain is so hard to deal with, even a moment without it is bliss. I have something called Polymyalgia Rheumatica (PMR for short) before I was diagnosed I couldn't sleep, couldn't stay awake because I couldn't sleep, walked around in a fog and just generally felt miserable, because everything hurt. There were times I thought about giving up but the cats & dogs needed me. Luckily I was eventually sent to a wonderful Rheumatologist who diagnosed me right away and started me on prednisone. I still remember what a relief it was to wake up mostly pain free after a full nights sleep. I hope they can find something that relives your pain and gives you a decent quality of life.
Alasandra, I love your name, and I'm very happy that you're doing well.
"There were times I thought about giving up but the cats & dogs needed me."
I'm sure that a lot of people end up this way--my sister for one.
"I was eventually sent to a wonderful Rheumatologist who diagnosed me right away and started me on prednisone."
I was recently put on prednisone short-term for another problem. It helped a lot with the pain, but my internist wouldn't keep me on it due to the potential side-effects. When I next talk to my pain specialist, I'll ask him about it. I recently started yet another round of physical therapy, and the therapist I'm working with this time is doing me more good than my previous therapists, so things aren't all downhill. However, I've been disappointed so many times by things that intially seemed as if they were helping and then stopped working that I no longer allow myself to feel optimistic. I suppose it's common for people with moderate to severe pain to think that if they keep plugging away something will eventually click, but I've found it impossible to maintain this view. I still try to help myself, of course, but it's definitely better to not take a rosy view and then feel like an idiot for allowing oneself to believe.
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