Chronic Pain members - Welcome, please introduce yourself

When my pain specialist tried to lie and taper me, I involved my US Senator, John Barrasso. I proved that the CDC Guidelines were not written for Chronic Pain patients by the CDCs own warning letter issued after they were released (check the site).
I proved that opioids are necessary for quality of life and I’m not a seeker— I’ve never broken a contract by shopping illegally for my medications, pharmacy hopped, or had another doctor prescribe them.
The decrease was unwarranted, unnecessary, and fully driven by DEA pressure.
Barrasso got involved and it was quickly and forthrightly halted.

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Dear Ones,
I realized that I left out an incredibly important piece of info in this post. That is that the head of the Kaiser Permanente Opiate Oversight Management Team, who happens to be a Psychiatrist (there are many disciplines on the team), met with my husband, PCP and I, quite some time ago, to tell me they validate me and my need for morphine! She was adamant that we knew and understood the team felt this way! I about died of shock LOL!! I have been on pretty much all of the opiates over the past many years (27+) I think.
I wish the same validation, respect and relief for all of you! Warmest wishes, Sunnyflower. 🙏😊🌹

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Hi Renee, thank you for all you are doing to help so many! Bless you girl for your efforts in the midst of your pain! Wow, you are an inspiration! I 've never heard of this before. How can I help if I am able? Warmest regards, Sunnyflower. 😊🙏🌹@lioness, @ellens @jesfactsmon

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@faithwalker007

Hi, Renee. I'm in a semi-dark place right now because of pain and pain treatment. The neurologist tried to set up a consult appointment to discuss a pain pump implant, but after I sent him a note asking him to expedite the process, he called the doctor he had referred me to, and discovered that no one in central Oregon manages pain pumps. Getting the implant is no problem locally, but the doctors who manage the medication in the pump are 150 miles away. And my wife has voiced her objection to the pain pump implant.

Back to what you said about having a doctor trying to taper you off opioid. I used to take 30mg tid, but after tapering off completely, I only went up to 15mg tid. I've pretty consistently been taking it only bid, to build up a backup supply. This summer my prescription was cancelled 4 months, because the supplement insurance wanted prior authorization. So much for the backup. I know that when I take 30mg, it reduces the pain noticeably. A while back my pcp told me that he wouldn't increase my dose because of tolerance. If I can't get the pump implant, I know that I'm going to need more mscontin.

Did you get the pain specialist to back off and give you the prescription you needed? Can you tell me how much you were taking that prompted the doctor to tell you that?

I guess I need to get an appointment with my pcp and ask him to increase my dose. I'm going to use some of the things you've posted in the conversation.

Thank you for all you're doing.

Jim

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Jim, at the time I was actually taking less OxyContin and I was in Percocet 7.5mg qid-5x day for breakthrough pain. My pain was at a 8 or 9 24/7.
The reason they were trying to lower it had nothing to my pain. It was strictly due to pressure from the DEA on the doctors in Casper, WY where my pain clinic is located.

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I guess y’all can keep sharing about the petition and collecting signatures. I’ve been down for the last two days with a severe flare and haven’t been able to do much. Expecting tomorrow to be worse. A wet fall snowstorm hit Northeastern Wyoming and I’ve been unable to function since except to make my way to the bathroom, bathtub to loosen my muscles from intense cramping from the windup and eat a little bit to keep my meds down.
Welcome ole man Winter!

The more signatures I can get, the more serious the legislature will have to take me.

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I'm trying to get an appointment with my pcp, and I want to move my prescription back to 30mg tid of morphine sulfate contin, though I won't necessarily take the full dose, at least not at first. I just want to have the option of having enough, whether it's 15mg qid or 30/15/30, or whatever combination keeps me somewhat sane.

I did turn the scs down a notch after 2 days, and again after another day. I turned it down one more notch tonight, and I'll see if it makes a difference. If it doesn't work, I'll call the rep, and have him try to recalibrate.

Another thing that's going on is that I continue to lose weight, even though I eat plenty, and have snacks. I dipped below 150 last night. Getting close to the underweight line in my BMI.

Jim

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I guess y’all can keep sharing about the petition and collecting signatures. I’ve been down for the last two days with a severe flare and haven’t been able to do much. Expecting tomorrow to be worse. A wet fall snowstorm hit Northeastern Wyoming and I’ve been unable to function since except to make my way to the bathroom, bathtub to loosen my muscles from intense cramping from the windup and eat a little bit to keep my meds down.
Welcome ole man Winter!

The more signatures I can get, the more serious the legislature will have to take me.

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Hi all!

I am hoping this will provide another resource in everything I've been going through the last year.

Last fall I started experiencing daily sharp, stabbing headaches that would come and go all day long. My GP referred me to a neurologist as I already suffer from migraines and she felt that would be best for treating two headache disorders. Through a process, we got them under control with indomethacin. The initial diagnosis he gave me was indomethacin-responsive trigeminal autonomic cephalalgias. For seven months, I had no headaches, unless by my own fault I missed a dose. In August, the headaches flared up despite the medication, though not as severe as last fall, which has been very discouraging as once again I am in daily pain at various levels off and on throughout the day, and finding a solution has been challenging both on the medicinal side of things and in working with my neurologist. This Tuesday I'll try and SPG block for the first time which I'm hoping will at least provide some temporary relief. Until that relief comes, I will continue moving on one day at a time as that's all you can do.

Rebecca

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