Tips for working with your doctor to help pain

Posted by galesr @galesr, Oct 9, 2023

I'v been on pain meds all my life so I could have a life. In the last three years my doctor has taken off all pain meds. Life really sucks now. I'm back to not being able to do things I enjoy. And they wonder why from there we are depressed. No fun in life any more. Are real people with pain paying for the real dug addicts? Wish the doctors could feel our pain!

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I was prescribed Suboxone for pain, which was the mistake of a lifetime! My PA told me she has prescribed it for several patients with no adverse effects - l have a fairly high tolerance to pain meds, but although it helped the pain it also knocked me on my kiester! Does anyone have any thoughts on that?

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@caun3508

I was prescribed Suboxone for pain, which was the mistake of a lifetime! My PA told me she has prescribed it for several patients with no adverse effects - l have a fairly high tolerance to pain meds, but although it helped the pain it also knocked me on my kiester! Does anyone have any thoughts on that?

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WHY PA???? Big mistake. Play doctors. I run from them. Where is your pain Mgt doc? PA? Lol. Oye!

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@taftst1

WHY PA???? Big mistake. Play doctors. I run from them. Where is your pain Mgt doc? PA? Lol. Oye!

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In regard to PAs, I get examined at a pain management clinic which has two pain doctors. Unfortunately, they have probably hundreds of patients so there are a number of PAs on board and, as a long term patient, they are whom I mostly see at my appointments. My pain issues have been with me for close to twenty years and every year it seems that more PAs are involved at pain management centers as well as at all the other doctors offices at which I’m seen. I’m continually praying that one of these days my doctors and PAs will come across a way to cure my pain.

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@kfxston

In regard to PAs, I get examined at a pain management clinic which has two pain doctors. Unfortunately, they have probably hundreds of patients so there are a number of PAs on board and, as a long term patient, they are whom I mostly see at my appointments. My pain issues have been with me for close to twenty years and every year it seems that more PAs are involved at pain management centers as well as at all the other doctors offices at which I’m seen. I’m continually praying that one of these days my doctors and PAs will come across a way to cure my pain.

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Thought you were at pcp office. My mistake. I see a PA at my pain Mgt. Only see doc if you are getting a procedure. It’s a racket!! Plus I know my doc 18 years! So next week when I’m on the table in my rear end is in the air for an epidural, I’m gonna start asking him questions about what’s going on. The man is extremely intelligent.

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@taftst1

WHY PA???? Big mistake. Play doctors. I run from them. Where is your pain Mgt doc? PA? Lol. Oye!

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Interesting that you question a PA. Mine has been more attentive to my overall health than any MD has ever been! I live in a small county where medical resources are scarce. I believe she made a mistake by prescribing Suboxone, I am fortunate to have researched and having been a nurse, she listens and respects what little knowledge I have. Oh yes, we have a pain management MD who in all honesty, is quite impressed with his own knowledge and is unwilling to believe that his patients may have just a bit of knowledge!

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@caun3508

I was prescribed Suboxone for pain, which was the mistake of a lifetime! My PA told me she has prescribed it for several patients with no adverse effects - l have a fairly high tolerance to pain meds, but although it helped the pain it also knocked me on my kiester! Does anyone have any thoughts on that?

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Yes, I had a similar experience. It takes a lot of buprenorphine to treat pain. Then you get all the side effects of high dose buprenorphine. The doctors say it's safer. I couldn't do it, so I asked for my old plan meds back. Luckily, they restored my previous medication. After fighting with Walgreens for a couple of days, I was back on my old medication.

But they won't increase the opioid dose because I have reached the max for my Pain clinic, so the Oxy don't work so good any more. It's a catch-22.

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@jthomas458

Yes, I had a similar experience. It takes a lot of buprenorphine to treat pain. Then you get all the side effects of high dose buprenorphine. The doctors say it's safer. I couldn't do it, so I asked for my old plan meds back. Luckily, they restored my previous medication. After fighting with Walgreens for a couple of days, I was back on my old medication.

But they won't increase the opioid dose because I have reached the max for my Pain clinic, so the Oxy don't work so good any more. It's a catch-22.

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I’m sorry to hear that. You did validate my opinion though and I thank you for that!

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@kfxston

In regard to PAs, I get examined at a pain management clinic which has two pain doctors. Unfortunately, they have probably hundreds of patients so there are a number of PAs on board and, as a long term patient, they are whom I mostly see at my appointments. My pain issues have been with me for close to twenty years and every year it seems that more PAs are involved at pain management centers as well as at all the other doctors offices at which I’m seen. I’m continually praying that one of these days my doctors and PAs will come across a way to cure my pain.

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Where is your pain, and do they have any idea of maybe why?

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@jthomas458, have you looked into Ketamine or Memantine as options? My son has been through the patches, the opioids, CBD, etc., but has found ketamine a game-changer on his pain. He takes ketamine wafers daily at night, and his pain has gone from an 8 to a constant 4. Ketamine will work well for 1/3 of people as a treatment, but it is an option to consider. Most pain doctors do not do this treatment, but after so many years of searching, this changed his life. He started on the infusion path and moved to wafers during the COVID-19 days.

He is now trialing Mamantine, which works similarly to ketamine without some of the potential side effects. He has also indicated it helped his fatigue. Memantine is a medication that treats moderate to severe confusion (dementia) related to Alzheimer’s disease. It is now being trialed for long Covid-19 patients to help them as it has been shown to relieve pain/fatigue and is not expensive.

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@csearch

@jthomas458, have you looked into Ketamine or Memantine as options? My son has been through the patches, the opioids, CBD, etc., but has found ketamine a game-changer on his pain. He takes ketamine wafers daily at night, and his pain has gone from an 8 to a constant 4. Ketamine will work well for 1/3 of people as a treatment, but it is an option to consider. Most pain doctors do not do this treatment, but after so many years of searching, this changed his life. He started on the infusion path and moved to wafers during the COVID-19 days.

He is now trialing Mamantine, which works similarly to ketamine without some of the potential side effects. He has also indicated it helped his fatigue. Memantine is a medication that treats moderate to severe confusion (dementia) related to Alzheimer’s disease. It is now being trialed for long Covid-19 patients to help them as it has been shown to relieve pain/fatigue and is not expensive.

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I did a short trial of Ketamine infusions in a clinic where they administered it for depression. The doctors running the clinic thought pain management would be novel application, so they took me as a patient. It was not covered by insurance, but I have given all the alternative treatments out-of-pocket trials. Anyway, the ketamine infusions were interesting. The clinic nurse had a lot of problems hitting my veins, so that was always an adventure. Ultimately, we would get the IV placed and Ketamine administered. I didn't have any pain during the treatment, but it would return soon after I got home. I've heard about the nasal spray, lozenges and the wafers, but I've never tried them. I think I could find them with some research. Probably still not covered by Medicare, but it would probably depend on the source.

I remember when my Mom was on Memantine for several years when she had alzheimers. I have not tried it, nor have any doctors mentioned it to me.

How does your son find these doctors? In my experience, pain doctors mostly do procedures. It is rare to find a doctor who will do medication management, and still they want to try the same procedures over and over again, when they haven't worked previously. I let them do the procedures, because they are covered by insurance.

I found the idea to try high dose buprenorphine thru an addiction management clinic that also claimed to treat pain. Most of the addiction management clinics don't want to touch pain patients, and the low dose buprenorphine medications that are approved for pain (like Belbuca) don't provide a high enough dose to help long term opioid patients. So, it was really hard to find a doctor who would prescribe high-dose buprenorphine off-label for pain.

I live in Colorado, where it's pretty easy to find ketamine, cannabis and other things. Not sure about Memantine, but that sounds like something my primary care doctor might prescribe. I tried Cymbalta and Lyrica, but they made me crazy.

I take a pretty high daily dose of Gabapentin with my other pain medications. It just makes me tired. I think the Gabapentin helps, but I'm not sure.

I am always looking for alternatives to the old-school opioids, because they are really hard to get, and they don't lead to a good place. They work for a few hours, and then you have to take more in a higher dose. Then the doctors and pharmacies are afraid of accidental overdose and losing their licenses. I would love to find something else that works.

I will add ketamine wafers / lozenges and Memantine to the list of things I haven't tried. Haven't tried a spinal cord stimulator either, because my sister is bedridden after a failed SCS implant procedure, so I crossed that off my list. Ketamine and Memantine seem much safer, with little downside.

These are good ideas, and I appreciate you sharing these medications that have helped your son. I will see if I can find reliable sources for these medications. Thanks.

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