• Quote of the Day
    "Plant your own garden and decorate your own soul, instead of waiting for someone to bring you flowers."
    Veronica A. Shoffstall, After a While (1971), posted by David Baxter
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I have had severe spinal stenosis and severe disc degeneration for years. I'm in pain all the time. The doctor has been treating me with pain medication; hydromorphone to be exact.

Two days ago my family doctor told me he must stop the pain medication. He's changing the policy in the clinic to a narcotics-free zone. He said chronic pain is a mental illness, not a physical problem. I asked him for a referral to a specialist who can help. He said he doesn't do that. He gave me one last prescription and told me it's up to me to figure out how to stop it. Can a person safely stop hydromorphone cold turkey?

I tried to get lower-dose tablets so I can slowly taper the dose down, but the doctor said he can't do that. None of this makes sense. With the pain properly managed I have a quality of life. I have not had to rely on the health care system for anything for many, many years. Instead, I'm active in Toastmasters, I sing in two choirs, I attend church, and I volunteer at the museum. I'm not happy about stopping the pain medication without an alternative method of treatment, but that's apparently what I have to do. I dread going back into the despairing feeling I had the last time the pain was out of control....

Anyway, tips on how to stop the pain medications without shocking my system badly, are welcome.
 

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My husband has chronic pain, mostly from neuropathy in his feet. He takes Lyrica but still needs narcotics for the pain.

The family doctors here rarely prescribe narcotics. Even the orthopedic doctors and other specialists/surgeons will only do so on a very limited basis, especially due to their worry about the DEA (United States Drug Enforcement Administration) taking their medical license. So my husband gets his narcotics from a pain clinic, where they occasionally urine test him.

Even to get the narcotics from the pain clinic, he had to go through a lot of hoops, including alternative therapies.

But for my husband's back pain, he still gets a lot of relief from his spinal cord stimulator, which was implanted a few years ago.
 
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That makes sense - not prescribing narcotics. The reason I'm on hydromorphone is I begged to get off Fentanyl about 3 years ago. The doctor agreed the patch was no longer a good idea. I asked for something drug free, but she wouldn't prescribe it. She said the hydromorphone, when used properly, is the best solution for my condition.

For many years I agreed with her. It greatly improved my quality of life. However, there are many people dying from opioids. In September, just after a major surgery where I was given an epidural for a few days, I realized there were other ways to deal with the pain. I asked to be referred back to a pain clinic - one that would freeze/burn the nerves rather than prescribe drugs, but the doctor never got around to making the referral.

Now the policy in his office has changed and I feel trapped. I've wanted off this stuff for years, but I can't just cut it off. It has to be tapered down. I've done it before. I find it odd that I can't get lower dose medications so I CAN get rid of it.
 

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. She said the hydromorphone, when used properly, is the best solution for my condition.

That is a very powerful narcotic and is also known as Dilaudid. It seems Dilaudid is mostly given in hospitals and ERs here, rather than pain clinics. My husband is on hydrocodone.
 
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I know. I just want off it. I'm sick and tired of my requests to do it properly have fallen on deaf ears. Now I have to do it on my own and I don't want to hurt myself. I just need to know how.
 

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Thank you. This guideline is very helpful. It reinforces what I suspected - that I need to get some 2 mg tablets so I can more slowly cut it down. Right now I have a 6 mg capsule and a 12 mg capsule. The doctor refused to give me a lower mg capsule or the liquid medication.

What bugs me is I once got off the pain medication on my own in the past. I went 5 years without it. Then a new doctor noticed how high my blood-pressure was going when the pain got really bad. She sent me to a pain clinic and the doctor said I needed to go onto the Fentanyl patch. It took me three weeks to carefully consider the facts before I finally gave in. The recommended dosage was 75 mcg/every 3 days and I refused to go that high. Instead, I took the 25 mcg patch every three days and I stayed on that dose for the whole 3 years I was on it.

The reason I got off the patch is because, when the overdose crisis started to hit the mainstream news, I was faced with severe stigma. I wanted nothing to do with remaining on the pain medication. I asked my family doctor to refer me to a pain specialist who could find a drug-free way of managing my pain. The doctor at the new clinic decided, after reviewing all the imaging files of my spine, that I needed to be switched me over to Hydromorphone. I'm on a lower dose of narcotics equivalency wise, but I'm still on a narcotic. It makes me mad.

The problem is, there's no coverage for things like physiotherapy, massage, a chiropractor, etc. On top of that, there are no wheelchair accessible pool programs I can take part in. Swimming is suppose to be excellent but with an ileo conduit (ostomy bag for pee), I can't go in a swimming pool anymore. That's why they chose to treat the pain with the hydromorphone instead.

In the last few days I've been watching YouTube videos trying to learn what to do. This link was especially helpful in that it described how people sometimes get trapped in these impossible situations. History of the Opioid Crisis: How We Got Here:
.

I just wish doctors were obligated to help the patient get off these drugs when the patient is begging for it. It seems to be easy to put the patient on these dangerous drugs, but when there's a problem, they seem to get away with leaving the patient on their own to figure out how to stop the drug.

Back in the late 90's I fired one of my pain specialists. He had me on 900 mg of long-acting morphine a day - that combined with several major psychiatric drugs (Lithium, Mallerol, Luvox, Alprazolam) almost killed me. Thankfully I met a decent family doctor who told me how dangerous the "chemical soup" was and she offered to help get me off the drugs. To illustrate how tough I am, and how determined I am to stop these blessed narcotics, read this. It's a screen capture of one of my medical files back in 1997. At the time I was on the drugs named above plus the MS Contin. I'm lucky to be alive.

Screen Shot 2022-01-11 at 1.21.19 PM.jpg

Notice how, on my own, I dropped from 900 mg per day to 600 mg per day. The Saturday named in this file was the 8th of a month. The date the note was written was the 11th of the month. In other words I dropped 300 mg in 4 days on my own. Then, as it says here, I was dropped to 400 mg. short-acting morphine a day or two later... Yes, I went through horrible withdrawals, but I was afraid I'd die if I stayed on the high doses he was giving me.

You'd think I'd get credit for putting a stop to this doctor's dangerous prescribing habits, but oh no. A psychiatrist got a hold of my file just a few months after this incident and wrote in my file that I was a professional patient. This file, showing my strength and determination was obviously ignored.

Anyway, I can't believe I'm in this mess again. I think, what I'll have to do is break open the capsules and dump out some of the powder. I'll try to taper it off that way.

The good news is, I got out of the psychiatric system for good - I've been depression free, drug free, and psychiatrist free for almost 25 years now - but the stigma will never go away.

The doctor who wrote the report above eventually got in trouble with the College of Physicians and Surgeons and fled the country before they had a chance to take away his license to practice medicine. I'll leave him anonymous.
 

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Anyway, I can't believe I'm in this mess again. I think, what I'll have to do is break open the capsules and dump out some of the powder. I'll try to taper it off that way.

You cannot be playing pharmacist with an opioid. For example:


"Swallow the capsule or tablet whole to avoid exposure to a potentially fatal overdose. Do not crush, chew, break, open, or dissolve."

"Do not stop using hydromorphone suddenly, or you could have unpleasant withdrawal symptoms. Ask your doctor how to safely stop using hydromorphone."


On the positive side:


"There is no evidence that hydromorphone has any greater abuse liability than other opioids."
 
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I was afraid of that. I didn’t think the idea was too smart. I just don’t think it’s too smart to make drastic cuts to the dosages or go off cold-turkey. However, thus far my doctor is insisting I must sort this out on my own. I don’t know where to turn. I’m still looking.

The parish nurse from my church is helping. So is the pharmacist.

They can’t prescribe so, unless the doctor changes his mind, I’m in a pickle.

I’ll keep looking. During COVID going to Emerge is not an option either.
 

Daniel

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I'm glad you have some support.

Can you make an appointment (or telehealth/virtual appointment) with a new family doctor or clinic without having to a wait a long time?
 
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I sure hope so. My plan is to wait a few days until the Christmas rush is over and then ask for an appointment at a time when the office is less busy. I can't help but wonder if an overly stressed office worker caught the doctor at a bad time, reminded him about the new No-Narcotics policy and, without thinking, decided to tell me he's cutting me off. Surely to heavens a line of reason will prevail. We'll see.

I have an outstanding blood test that needs to be done - it's delayed by COVID - so I plan to get it done (it includes drug screening) and then wait for his office to call me to review the results. If they don't call me, I'll call them. I'll make the appointment and then ask, how can we do this reasonably?

Fingers crossed.
 

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By the way:

  • Buprenorphine-naloxone microdosing is a potentially valuable tool to help patients transition from problematic opioid use to opioid agonist therapy. The benefits to this approach include avoiding withdrawal before initiation, making buprenorphine-naloxone induction less daunting, and practicality for everyday practice settings.

  • ▸ One of the benefits of microdosing is the potential to mitigate the moderate to severe withdrawal that is required for standard buprenorphine-naloxone induction. Some patients experience mild withdrawal once they cease their opioid. There are many available easy-to-use tools to aid prescribers in quantifying the extent of their patients’ withdrawal and therefore assist in providing appropriate management.

  • ▸ This approach is not yet supported by guidelines and no standard protocol exists, as the evidence consists mainly of case reports. This technique is driven by patient response and therefore requires frequent contact with the prescriber and other care team members.
 

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He said chronic pain is a mental illness, not a physical problem.
I would leave a negative review for him on Google :)

Only ten percent of people with chronic pain misuse opioids. My husband's niece is one of them, with years of visiting a number of ERs in a metropolitan area. I have lost patience in having any relationship with her. She even tried to get pain pills when she apparently tested positive for COVID, but the ER rightly refused. She was shopping at major stores the next day. Just last month, after her mother died, she predictably took her mom's remaining pills.

Chronic pain and a lack of effective treatments are a very real problem, with one in five Canadians having chronic pain. Similarly:


Epidemiologic studies suggest that 22% of U.S. adults (55 million) experience chronic pain (3). In any given year, 14.3% of insured adults have pain sufficient to lead to an opioid prescription (3% for >90 days) (72). The corresponding figure for Medicare Advantage patients is 25.7% (7% for >90 days) and for disabled Medicare patients 51.5% (14% for >90 days).

The health-related quality of life of patients with chronic pain is comparable to that of patients dying with cancer (73). Inadequate treatment of chronic pain is associated with increased functional limitations, reduced employment, increased absence from work, disability retirement, reduced household income, poor global recovery from surgery, worsened mental health, increased use of health care resources, increased mortality (3, 74, 75), impaired cognitive function (76), and brain atrophy (77). Chronic pain is associated with increased risk of suicidal ideation, planning, and attempts (78, 79), even after control for psychopathology (80). Chronic post-operative pain impacts activities of daily living in ~25% of patients a year after undergoing inpatient orthopedic surgery (81). Inadequate pain relief after surgery is associated with increased length of stay, re-admission rates, and time to ambulation (64).

In 2011, the Institute of Medicine estimated that the annual cost to society of chronic pain, including post-operative pain, was $560–635 billion (82), based on estimated health care expenditures and costs of lost productivity. Treatment of pain has been associated with improvements in activities of daily living, reduced depression or improved mood, reduced fatigue, improved sleep, improved level of function, increased ability to work, increased enjoyment of life, and improved quality of life (3).


It's almost as if somebody came into your home and rewired your walls so that the next time you turned on the light switch, the toilet flushed three doors down, or your dishwasher went on, or your computer monitor turned off. That's crazy, but that's, in fact, what happens with chronic pain. And that's when pain becomes its own disease. The nervous system has plasticity. It changes, and it morphs in response to stimuli.

Well, what do we do about that? What can we do in a case like Chandler's? We treat these patients in a rather crude fashion at this point in time. We treat them with symptom-modifying drugs -- painkillers -- which are, frankly, not very effective for this kind of pain. We take nerves that are noisy and active that should be quiet, and we put them to sleep with local anesthetics. And most importantly, what we do is we use a rigorous, and often uncomfortable, process of physical therapy and occupational therapy to retrain the nerves in the nervous system to respond normally to the activities and sensory experiences that are part of everyday life. And we support all of that with an intensive psychotherapy program to address the despondency, despair and depression that always accompanies severe, chronic pain.

More info regarding alternative/additional treatments:

Opioids aren’t always the best way to treat chronic pain. The effectiveness of each of the following alternatives varies depending on the patient and the pain’s location, and research is ongoing for some therapies to assess their value:
  • Acetaminophen (Tylenol)
  • Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen (Advil, Motrin), naproxen (Aleve, Anaprox, Naprosyn), celecoxib (Celebrex), and aspirin
  • Certain antidepressants
  • Anticonvulsive medications, such as pregabalin and gabapentin
  • Corticosteroid injections
  • Topical agents such as capsaicin and lidocaine
  • Cognitive behavioral therapy (CBT)
  • Exercise or physical therapy
  • Complementary medicine, such as yoga, meditation, and acupuncture
  • Biofeedback
  • Portable transcutaneous electro-nerve stimulation (TENS) units
  • Brain, spinal cord, and nerve stimulation
These options come with their own risks, notably NSAIDs, which are associated with an increased risk of kidney damage, gastric bleeding, and cardiovascular disease. Other therapies, such as CBT, may not be covered by insurance or be available in certain areas.

Coping tips:

"When in Doubt, Nap:" 64 Inspirational Quotes from Chronic Pain Sufferers

 
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Daniel

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I realized there were other ways to deal with the pain. I asked to be referred back to a pain clinic - one that would freeze/burn the nerves rather than prescribe drugs, but the doctor never got around to making the referral.
My husband had such nerve ablation done for his back. It didn't work for him, though we had high hopes. At least in retrospect, it seemed a little primitive to me, though there were no side effects. Like a psychiatrist/researcher at the McKnight Brain Institute once told me, it's generally better to add (as in stimulation) than to take away.
 
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Her lawyer argued that Slone was neglected by his doctors and his care mishandled by the pain clinic. Since a car crash paralyzed him from the waist down, Slone had been prescribed high-dose opioids and taken them as instructed. But through his providers’ carelessness, the lawyer contended, his dose was rashly cut by 55%. When he couldn’t get any more medication, he feared days of no relief...

The panel found the physicians and pain clinic at fault and awarded the family nearly $7 million, with $3 million allocated for Slone’s daughter, who was 12 when her father died...

It is a sign of the growing recognition that after a reckoning over the damage wrought by prescription opioids, the pendulum swung too far back in certain cases and left another group of people with chronic pain at risk. The message is starting to come from the highest levels, with federal health authorities upping their warnings in recent years about the harms of unsafe dose reductions and stoppages.
 

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This is about chronic illness (rather than chronic pain per se) but seems just as relevant:


As far as medicine has come in treating disease, we still often come up short for those suffering from chronic and complex illness. These illnesses are poorly understood, and physicians often don’t know where to start and can get lost in managing the chronicity of a patient’s symptoms.

I regularly hear from patients that they have seen multiple physicians while trying to get a diagnosis or an understanding about why they don’t feel well. Their experience with these physicians usually leaves them feeling sad and frustrated as well as doubting themselves.

They describe stories of their visits and being told that it was due to stress, anxiety, or depression. At times, they are told it is because of their age or even their weight. This seems to happen disproportionately to women.

When we suffer physically for a long time and when physical symptoms change the way we live our lives, it is no surprise our mental health is affected
...

While the illness is not due to our mental health, it does have an effect on our outlook, so therapy is always a good part of the plan.
 
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But for my husband's back pain, he still gets a lot of relief from his spinal cord stimulator, which was implanted a few years ago.

I’ve tried to get something like this. I’ve also used the TENS machine. I had to keep increasing it because I got too used to it. In my opinion a TENS machine just causes a distracting buzz to make the pain less noticeable. It didn’t seem to help much.

My pain radiates into my legs and at times they go numb. Apparently there is some nerve root compression that, if I bend the right way, can sometimes be eased off. The thing is, I’m not an expert on anatomy so, when I try bending and twisting to ease it, there are times I make the pain much worse.

I’m just dreading losing the pain medication with zero options to treat the pain in some other way.
 

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I hope you get an appointment soon. Are you on an anti-inflammatory like ibuprofen or meloxicam? Or is that something your doctor doesn't want you on?

My pain radiates into my legs and at times they go numb.
That reminds me of my occasional sciatica, which is on my left side and is related to my mild scoliosis. The doctors told me the worst thing for my sciatica is sitting. But I sit most of the day at the computer. So I try to move around at least every 20 minutes or so. Since doing that, my back has not "gone out" again.
 
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I would leave a negative review for him on Google :)

Only ten percent of people with chronic pain misuse opioids. My husband's niece is one of them, with years of visiting a number of ERs in a metropolitan area. I have lost patience in having any relationship with her. She even tried to get pain pills when she apparently tested positive for COVID, but the ER rightly refused. She was shopping at major stores the next day. Just last month, after her mother died, she predictably took her mom's remaining pills.

Chronic pain and a lack of effective treatments are a very real problem, with one in five Canadians having chronic pain. Similarly:





More info regarding alternative/additional treatments:



Coping tips:

"When in Doubt, Nap:" 64 Inspirational Quotes from Chronic Pain Sufferers

I hope you get an appointment soon. Are you on an anti-inflammatory like ibuprofen or meloxicam? Or is that something your doctor doesn't want you on?


That reminds me of my occasional sciatica, which is on my left side and is related to my mild scoliosis. The doctors told me the worst thing for my sciatica is sitting. But I sit most of the day at the computer. So I try to move around at least every 20 minutes or so. Since doing that, my back has not "gone out" again.

I can’t take the anti-inflammatories anymore because it messes with my blood pressure and heart medication.

I use a wheelchair full-time and I know it’s making my back worse,

The thing is, I don’t know how to get around it. I’m single. I live alone. I have no family living nearby. And, if I go to bed, it makes the pain worse. I also lose hope if I go to bed and stop being active in my community.

I haven’t got a doctor’s appointment yet, But I’ll get one soon. I have to get blood work done so I figured I’d wait till it’s done and then get the answers to several questions all at once.
 

Daniel

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Can you see a physical therapist (again)? When I was caregiving, some physical therapists would make home visits for the convenience of the client.

Personally, I have used Youtube for physical therapy exercises. I am a big fan of Bob & Brad, the most popular PTs on Youtube. For example:

 
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