Living with Neuropathy - Welcome to the group

@jimhd I don't know how any of have the strength to deal with all of this. I really don't. My heart breaks for you and all of us here, that we cannot even get the meds we need. To know that there is a med out there that really helps you at the right dosage, and that you have to fight to receive it is horrific. We really do need the law to change. Doctors take care of themselves first, in not breaking the law. And to think there is no real proof that opiods don't help neuropathy is horrific. I can't even deal with this. I am so sorry, Jim. LoriRenee1

Oh, LoriRenee. bless your heart. I love you. The issue is not the law. I wish it was. The CDC Guidelines are NOT law, they are the medical recommendations by what is considered or once was, the premier, unbiased authority in medicine and trending of diseased population for the United States. They are not supposed to be politically, enforcement, employment, or penalty-driven. That age is over.

The DEA has taken, with the approval (whether intention, unintentional, spoken, unspoken, written, unwritten, authorized, or unauthorized) of Congress and the President of the United States and the American Public, these guidelines and applied them AS LAW.

They are not merely threatening PROSECUTION for violation of GUIDELINES, they are actually destroying lives by ENFORCING THEM. These ACTS are illegal because GUIDELINES ARE NOT LAWS. These guidelines were not written by Congress, voted upon, passed, and/or signed into law by the President of the United States... the only person who can enact federal law without the express action of Congress.

I love our country but I'm suffering because of it.

Dear Mayofeb2020, does laser have any effects aka help your pain? Does the laser hurt and of so could you please describe in what ways?
I really hope you get some relief very soon! Blessings, Sunnyflower

@sunnyflower. and others

I'm having to beg my doctor to increase the dose of my morphine prescription back to what it was before the scs implant, because the scs isn't working. He grudgingly agreed to increase it by 15mg. I moved down from 30mg tid to 15mg tid, which I realize now was a big mistake. In a message on the portal he said he would fill the prescription for 30mg bid, but wants to discuss it with me at my next appointment. My therapist is almost as angry as I am that I'm having such a battle with the doctors, trying to get a therapeutic dose of medication.

@faithwalker007 has been referring to the CDC guidelines, and I'm reading the recommendations. What has stood out is the recurring phrase, "There is insufficient evidence to prove that long term opioid use for chronic pain (naming neuropathy among other things) is ineffective." Another common theme is that "the clinician must prescribe medication sufficient to allow some quality of life, and must explain to the patient the balance between the benefits and the risks."

Doctors like to quote the CDC guidelines as proof that opioids don't treat either long term pain or neuropathy pain. That's a false interpretation of the recommendations. Between now and my next appointment, whenever that is, I'll be compiling a list of things I read to convince him that my experience has been that when I cut back on my dose, the pain increases. And to convince him that I'm not at risk of selling it for a profit, or that I will take more than is prescribed - I'm more likely to take less in case the system works so slowly that I would run out.

When every other medication has failed to work, I'm less concerned about the mechanism as I am about pain control. Telling me over and over that it's not a pain killer, but a pain signal interruption, falls on increasingly frustrated ears. I'm not stupid. I know the allegations that prescribers make, assuming that I'll just lie down and do what I'm told. I'm beyond tired of fighting to maintain my right to have access to the only medication that's helped long term reducing my pain.

Time to take my allocated bedtime pain pill, so end of rant.

Jim

I'm so sorry. I am a published author and I don't know how to dial it back. I'll try though.

@jimhd What kind of SCS do you have? Why isn't it working? Was it installed at Mayo Clinic?

@steeldove

I have a Burst DR spinal cord stimulator, implanted by a local surgeon and guided by an Abbott rep. It was great for a year, then during the second year it had to be adjusted every 3 months. After that it didn't have any effect on my pain. I've never met the surgeon except in the surgery prep bay.

Jim

@sunnyflower , I can relate and you spoke volumes for those who lost their voice but beg to be heard, and for those who somehow know your pain without ever having experienced it, I'd say you lost your way and you will need us to find it again if you so chose. David

Oh, LoriRenee. bless your heart. I love you. The issue is not the law. I wish it was. The CDC Guidelines are NOT law, they are the medical recommendations by what is considered or once was, the premier, unbiased authority in medicine and trending of diseased population for the United States. They are not supposed to be politically, enforcement, employment, or penalty-driven. That age is over.

The DEA has taken, with the approval (whether intention, unintentional, spoken, unspoken, written, unwritten, authorized, or unauthorized) of Congress and the President of the United States and the American Public, these guidelines and applied them AS LAW.

They are not merely threatening PROSECUTION for violation of GUIDELINES, they are actually destroying lives by ENFORCING THEM. These ACTS are illegal because GUIDELINES ARE NOT LAWS. These guidelines were not written by Congress, voted upon, passed, and/or signed into law by the President of the United States... the only person who can enact federal law without the express action of Congress.

I love our country but I'm suffering because of it.