Amen to that! I have lived with pain from being a small child, due to Ehlers Danlos Syndrome. Narcotics have, when necessary, given me huge benefit, sometimes allowing me to do physical therapy and in the really bad times literally enabling me to go to the toilet and to sleep. I'm so thankful for my doctor who prescribes to me what is necessary, I'm allergic to antinflamatories, so I'd be in trouble if they weren't an option. Cheers Anne
Umm... Yeah, that's the whole point. I, and I know for a fact many others on this group, am living proof of that. Part of the point is that while the pain is not "fixable", there is help and support, and there are ways/techniques of coping with it rather than (and I'm not referring to you or anyone in this group) wallowing in negativity/self-pity or taking that step for which there are no mulligans.
It is important to look at all possible sources causing the pain. Odd things can be the cause. Depression can aggravate or even create pain. Sleeping too curled can be a cause. Too short a chair can cause problems with both the legs and lower back. Weight from a purse/ book bag/ briefcase can cause pain.
Sometimes pain in the shoulders or muscles near the shoulder can be reduced or totally relieved by standing in a corner, place both hands at shoulder height and lean into the corner. This helps stretch these muscles back to the length they should be. I thought this was nuts when first told to try it, but did the exercise anyway. After a few weeks the chronic pain in my upper chest/ shoulders went away. I also learned to roll my shoulder back when sleeping instead of curling up in a ball. I also try to maintain better posture when working my various crafts. Many small changes have lead to less to no pain and more work accomplished without using any drugs.
There's nothing wrong or incorrect about anything you say, and I/we do appreciate your good intentions; what you've laid out makes perfect sense for someone who suddenly finds themselves in pain they can't understand, BUT... (And thank you for making my day - I haven't ROTFLMAO so hard in quite a while and I really needed that...) you have NO IDEA (in my case) who you're responding to... I went through all that stuff many years ago in the first few months of my... um... journey. I've been through more testing and prodding than Arlo Guthrie in the "Alice's Restaurant Massacree with full orchestration and five part harmony and stuff like that..." At one point when writing my first advocacy presentation. I coined the term, "guinea pig complex" (though I won't claim credit only because someone likely came up with the same term before me) from being shuffled from doctor after doctor, test after test, therapy/drug after therapy/drug... because nobody knew a damned thing and I felt like a guinea pig being used for testing their pet theories and drugs. My chronic intractible pain is WELL documented, accepted by my team of physicians without question, and I promise you, the real McCoy. I have actually had doctors (more than one), after looking at my films, say to my face, "Wow, no wonder you're in so much pain!" and to loosely (VERY loosely) paraphrase J., there isn't a damned thing any of them can do about it.
I apologize if any of the above has offended you. Some of us have been through SO much we have become jaded and hardened to well-meaning people, yet we are some of the most vulnerable people on earth. The only people who have things as bad as us "painees/painies" (another term I coined, but probably not first) are those saints who are our caregivers, who have to put up with all the **** we dish out as well as watching us struggle to do day-to-day things most people take for granted (if we even can).
Ok, that was MY vent for the day. As I mentioned before, it's been a really bad week for me. I hope everyone reading this can find a little understanding, if not forgiveness, in their hearts.
"Dr. Zachary Smith" wrote ... Umm... Yeah, that's the whole point. I, and I know for a fact many others on this group, am living proof of that. Part of the point is that while the pain is not "fixable", there is help and support, and there are ways/techniques of coping with it rather than (and I'm not referring to you or anyone in this group) wallowing in negativity/self-pity or taking that step for which there are no mulligans.
Gee, just September? With me it's all the other months besides Sept. Was operated on the C5-C7 for stenosis 33 years ago.In fact, after the 4th time of being operated on, (fusions etc ) they closed me right up and told me nothing could be done -too much scar tissue. Now arthritis has set in and it's back to stenosis of the spine again with the nerves being affected . There is shooting pain down both arms radiating from the neck. Tried self hypnosis to no avail. Tried acupuncture also to no avail.They have tried morphine with no results, I am now on oxycodone which isn't really that effective.Two weeks ago they injected me in the trapezoid area which worked ....for 2 days only! Go to pain clinic every month . BTW the surgeries I had was due to wrong dignosis and years ago, one did not sue.The initial pain was from injury of the rotator cuff but they talked me into stenosis. Long story. So now you know why I don't quilt or sew
I also live with intractable pain due to nerves being damaged and irritated by Sjogren's Syndrome and lupus. It hurts.
I spent today at the tote class again. Five hours yesterday and again today. I started to get shaky by noon. It's more than pain, but the pain is enough. By the time I left at 4 something p.m. I couldn't carry my SM. It;s the little Pfaff 7570.
Too much pain and huge mental confusion to go with it. And then my hands wouldn't close. You just can't imagine. Doc, I'm glad you're advocating. LOL -- had a young resident at the U medical center lose patience with me couple years ago. She finally shouted 'Look, youv'e got nerve pain. There's nothing to do for it, no way to treat it and it's going to get worse and worse.' Um, okay.
I'm really sorry so many of us hurt so much. And I'm glad there are paths to freedom from some pain. Mine is just my bit to carry. We all have something.
hugs and love to you all, I keep you in my prayers. Sunny
I also live with intractable pain due to nerves being damaged and irritated by Sjogren's Syndrome and lupus. It hurts.
I spent today at the tote class again. Five hours yesterday and again today. I started to get shaky by noon. It's more than pain, but the pain is enough. By the time I left at 4 something p.m. I couldn't carry my SM. It;s the little Pfaff 7570.
Too much pain and huge mental confusion to go with it. And then my hands wouldn't close. You just can't imagine. Doc, I'm glad you're advocating. LOL -- had a young resident at the U medical center lose patience with me couple years ago. She finally shouted 'Look, youv'e got nerve pain. There's nothing to do for it, no way to treat it and it's going to get worse and worse.' Um, okay.
I'm really sorry so many of us hurt so much. And I'm glad there are paths to freedom from some pain. Mine is just my bit to carry. We all have something.
hugs and love to you all, I keep you in my prayers. Sunny
I am not offended in any manner. I was just adding my two cents because I see too many people in pain because of lifestyle or diet habits. And yes I am very aware of some of the problems of chronic pain. My Father used a 2x4 as a paddle when I was eleven because I missed dusting a door frame top while cleaning. He cracked my left hip and it was never treated. Add to that damage due to being four years in a marching band where the step used caused damage to foot arches, knees, ankles. Add to that being an active farm youngster who jumped out of too many hay lofts and trees. Add falling off or being thrown by a galloping horse a few times. Since about 20 years of age I have had to use a cane from time to time to be able to walk with the pain. Since age 48 I have now spent all that time walking with a cane. A darling number with an expandable seat so I can stop to rest as needed. I use the store provided electric chairs when shopping and do little shopping in large stores without those power chairs.
A little over ten years ago I was told by a doctor that if I did not have both hips and both knees replaced I would indeed be in a wheel chair within six months. I did not have the surgery and am not yet in that wheel chair. It has not been easy, but between various exercises, vitamin/ mineral supplements, and some days not able to leave the bed I still walk most days. Several other doctors consulted at that time agreed with the diagnosis.
They also all agreed that I had sever arthritis. The sever arthritis turned out to be a pinched nerve that none of them would acknowledge. Which is what I thought it was and had confirmed with treatment by a chiropractor. I had lost complete use of the left arm in two days with that pinched nerve. I now have full use of that arm with minor numbness in the index finger as the only remaining problem. The nerve pinch was in the left shoulder as a result of a school bus at good speed backing into my stalled vehicle and dragging my stalled vehicle six feet. My stalled vehicle was a 3/4 ton van. No real damage to the school bus beyond dust marks, my van was totaled.
No, my pain is nowhere close to what you have to handle, but for some of us better posture, better diet and some basic exercises can relieve a lot of pain. Take care of yourself.
I'm glad you weren't offended by my rant; I'm a little less tired today if nothing else. The above quote is interesting because it shows that we are often as likely to dismiss our doctors as our doctors are to dismiss us. I'm not judging whether this is good or bad - it just is.
From what little I think I know about it, (and by all means check it out for yourself) arthritis is relatively easy to diagnose because it shows up clearly on an X-ray. Nerve damage (or pinching) is difficult to diagnose because it does not show up on an X-ray. Is it possible that you had/have both? I do, and the arthritis rarely bothers me because the other sources of pain are so much more severe.
There is a concept in pain medicine known as the "gate control theory", which (oversimplified) says that only so much pain can be transmitted through the nervous system at a time, and our brains unconsciously decide for us how much of which pain gets through to the brain and registers. Often, acute pain overrides chronic pain (though chronic pain overrides all other symptoms), so in your case, the pinched nerve may have overridden the arthritis.
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don't cite wiki as a medical authority but rather as aninformational jumping-off point) If what you're doing works for you and you're satisfied with the level to which your pain is being addressed, I sure don't have any problem with that. You're in the lucky group - statistically, more than 40% of people with moderate to severe chronic pain cannot find relief.
My DH is in constant pain from a back problem. This has been ongoing for 20 years. In 91, he had a laminectomy which relieved his sciatica. He could get no relief before the surgery. He slept in a bean bag chair for a month.
After the surgery, he was relatively pain free for 10 years. Then he started having problems again. The last 5 years have been horrible and constant. But at least this time he can get a little relief from lying down. Sitting in his desk chair seems to be the worst for him. Thank goodness for cell phones and laptops. He can do his job from the bed.
Last summer, he had a spinal fusion. It didn't help at all.
Last week he had a procedure in which they went in with long needle electrodes and cauterized the nerves on one side. A friend with the same history as Joe had the procedure and has been pretty well pain free for a month. We were so hopeful, but he hasn't gotten any relief yet. It's doubtful he will.
He is on pain medication. It makes the pain tolerable but the side effects are harsh. And he lives in constant fear that the doctor is going to cut off the meds at some point. He takes more than he's supposed to, to get through the work week and then lays in bed all weekend without the medication hoping to make the prescription last.
He doesn't want the pain meds, he wants to be pain free.
Part of the problem (and he is well aware of it) is that he is like a clenched fist most of the time. He's Italian. He gets angry easily (partly from the pain) and he tightens up. Those tight muscles make the pain worse. He takes a muscle relaxant to help with that. He is also on anti-depression meds. He insisted he wasn't "sad". We convinced him that his depression manifests as anger. Never at us, just in general.
He's pretty much given up all the outdoor sports he has always done. He is a competitive trap and precision rifle shooter. If he spends a day at the trap range, that means 3 days in bed.
He tries to stay upbeat, for me, but this is no way for a person to live. His doctor is at a loss.
My personal observations from taking what you say at face value:
Your story/situation is more common than you may think.
Your husband's pain is not being adequately addressed, and he needs to speak frankly with his doctor about how the pain is affecting his everyday life. If possible, go with him, and give the doctor your input.
All true except the Italian part. It's not that he's Italian; it's that he's human. There is a well-documented connection and vicious cycle of pain-insomnia-depression-stress (not necessarily that order)
IMO, you both need support groups. He needs one for chronic pain patients - you need one for caregivers.
If you want/need to take this offline, you know where to find me.
Doc Smith Oh, the pa> My DH is in constant pain from a back problem. =A0This has been ongoing f= or 20
Tell your DH he's got me pulling for him. Until you have chronic pain you have no idea what it's like. I don't think anybody but we "painiacs" and our spouses have a clue. Hug him and tell him I'll add him to my prayer/good thoughts list.
This is difficult for me. I don't begrudge you anything; I don't doubt your pain. I'm glad that you have been without pain at times and that you have the prospect of healing yet again. Yet I confess a jealousy, if I'm going to be honest, that may be shared by some, if they're going to be honest, who do not have that prospect. For a great many of us the reality is that there is no prospect except to be the same, or more likely, to deteriorate as time goes by. I'm not being negative or pesimistic; I've been told by both medical professionals and peers that I have one of the healthiest and upbeat outlooks they've seen for someone with my challenges.
The "current" pain scale in use by most hospitals has many flaws, some of which have already been mentioned. Another *major* flaw is that as human beings we are all different, including our tolerance for, and perception of, pain. One person's "7" may be another person's "3", and when the pain is our own, it is naturally more intense/worse than the other guy's. I've seen "drama royalty" (so as not to be sexist) walking around carrying on with activities claiming to be at level 9 or 10 (the worst imaginable) when, as previously opined, those kinds of levels should have one in an ER in agony and in need of some
*heavy* opioid pain medication.
When speaking of acute vs. chronic pain the clinical differences are clear and fairly well-defined. However there is another distinction =96 one that the literature (e.g. general med school curricula, which can amount to as little as 1/2 hr. spent on treatment of pain & pain meds) usually fails to mention - and that is a psychological difference. When we experience acute pain =96 hitting a thumb with a hammer, a toothache, breaking a bone, stepping on a nail =96 we know that that pain will end, whether with medication, physical therapy or chiropractic, or eventually, with normal healing. It=92s just a matter of following a prescibed regimen of treatment and waiting it out.
With chronic pain, we have no such knowledge. Regardless of the intensity of the pain, we don=92t know when it will end or even IF it will end. This has an *entirely* different effect on the psyche in ways that no-one is really prepared for =96 the unknown quantity*.
something whose nature, behavior, or importance is uncertain and unpredictable
Without the objectivity of something like Dr. Hochman's scale, the subjectivity of the current scale combined with the psychological effects of *chronic* intractable pain, can easily, and over time, escalate a 3 to an 8, like the effects of so-called Chinese water torture.
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