Living with Neuropathy - Welcome to the group

Hi Guys, I would like to be in a support group but the only ones I have seen are run by a nurse.
I have a HUGE issue with people who have never experienced the unrelenting severe pain we go through giving advice.

And since we're on the subject, every time a medical provider refers to our pain as discomfort, I want to slap the..... out of them and that is a gross understatement! And I 'm not a violent person! This has happened way too many times to count over the years. There, I feel much better now. Not! Can anyone relate?

Take care guys, Sunnyflower @jesfactsmon @bustrbrwn22. @lorirenee1 @specialty555 @helennicola @artscaping @parrotqueen

@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

Dear mayofeb2020, I am so sorry to hear about your struggles and pain. I will keep you in my thoughts and prayers. Warmest wishes, Sunnyflower 😊🙏. @contentandwell @lioness

@sunnyflower
I totally relate. I remember the guy in the steam room when the subject of narcotics came up. His criticism of me for taking them was unrelenting. Unless they experience what you are going through I don’t think they really understand and many seem to make light of it. I’d like to slap them silly too Sunny.
I hope your agonizing pain stops like mine did.
Take care,
Jake

@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

Hi back at you @sunnyflower, I guess you know how to let 'em have it. Duly noted and will offer this in my defense.... re: the use of discomfort. I thought about that and reviewed some of my posts.

Discomfort for me is more descriptive of the mental anguish we experience than the physical which we refer to as pain. Discomfort is an irritation, an inconvenience, an annoyance, and a bother.

So I frequently use both descriptors together e.g. "pain and discomfort." Hope that works for you and the crew.
@jesfactsmon @bustrbrwn22. @lorirenee1 @specialty555 @helennicola @parrotqueen

May you be free of suffering and the causes of suffering.
Chris

@jakedduck1 @artscaping @sunnyflower @lorirenee1
I know that the behavior you guys describe (about people who have not experienced pain but come off as though they understand) is just plain good ol' fashioned arrogance. They assume they understand what you are going through with your pain. I learned many years ago about my own attitude of arrogance (not about pain at that time but other things) and it took a lot of hammering on me by a wise little person who I happen to share my life with. She was patient but unrelenting and shut me right out until I finally woke up. It really is like waking up into a different reality when the realization hits. The realization that "Oh, I actually DON'T know what I am talking about. Hmmmm..."

What these people need is some familiarity with Mike Tyson's famous quote about boxing, "Everybody has a plan until they get punched in the mouth". They need to be made to stop assuming they know anything about the pain another person lives with. I guess it's called learning humility, a lesson more people seem to need today than ever. And Chris (and the rest of you tremendous people), in my book you have earned the right to call your pain anything you want to call it. If anyone has not lived it, they do not have that right. Best, Hank

Jim,
Be vigilant not to attack or condemn your provider and stay within your pain agreement. The guidelines are also directed toward Primary Care Providers, not Specialists, a fact that the CDC is working on at the moment. The AMA also just released a letter in support of the fact that physicians have abandoned treating Chronic Pain Patients. https://searchlf.ama-assn.org/undefined/documentDownload?uri=%2Funstructured%2Fbinary%2Fletter%2FLETTERS%2F2020-6-16-Letter-to-Dowell-re-Opioid-Rx-Guideline.pdf

This letter was written during the CDC's open session for comment about the Guidelines. They are working on changing them right onw.

Back to your appointment. You are not the intended target of the current guidelines, none of us are. The issue? The DEA has made all of us, the doctors, the pharmacists, and the addicts on the street, the TARGET WITH THE BACKING OF CONGRESS AND THE ADMINISTRATIONS -- PAST, PRESENT, AND FUTURE.

WHY? Because they have been given carte blanche to do whatever it takes to stop the "Opioid Epidemic" and slow the death rate from it. The problem is that they are BREAKING THE LAWS OF THIS COUNTRY.

1. Violating HIPAA.
2. Violating the Privacy Act
3. Violating the the Rights of every patient's Constitutional Right to Life, Liberty and the Pursuit of Happiness
4. Violating the ADA of every disabled person who is a patient.

These are just the violations on the PATIENT'S side. The provider's side include forced compromise of care, violation of the Hippocratic Oath, constitutional rights, and others.

Jim, you have to make your doctor your friend not your enemy. You need to show them that you understand their plight. That if they are following the government's direction, they need to question it.

Back up everything you say with medical facts and the CDC not anything else especially if they are ON BOARD with what they are doing! If they are questioning it like my provider, then give them a reason to treat you the right way like the AMA letter.

We are the patient. We are the one's living in agony. We are the ones that they are committed to serving. BUT... we aren't the ones holding the proverbial gun to their heads threatening to pull the trigger and destroy everything they've worked to build and their entire world if they don't tow the line.

SENATOR BARRASSO is monitoring this: he may be a Wyoming Senator but get in touch with him and mention my name. Tell him your story. We need to start coming together instead of fighting our battles alone.

I'm praying for you and remember, your doctor is NOT your enemy. They may be mislead, frightened, or even brainwashed but it's now our job to teach the medical field that OPIOIDS are actually a real treatment for chronic pain.

NERVE PAIN AFFECTS MORE THAN THE NERVES. It lights up the muscles, tightening them, cramping them, pulling at the joints and causing grinding and severe muscle and joint pain. Nerve pain doesn't isolate to the nerves but involves the muscles and joints AROUND the nerves. If it's in the feet, it involves the ankles and toes. If it's in the back, it involves the spine and upper legs and/or arms. If its in the neck. it involves the shoulders, back and head including migraines and tension headaches.

To treat nerve pain with or without Lyrica, Cymbalta, Neurontin, etc. means to treat it WITH OPIOIDS or to leave a patient suffering unspeakable torture and agony. That is inhumane. A fact the medical and law enforcement community of this nation needs to reminded of repeatedly.

My 4 year life with CRPS has taught me more than my 23 career as a pharmacist ever could. It's taught me that people can never understand what I am going through unless I tell them. And I need to tell them in terms they understand, not me. To do that, I need to know them. Your doctors only understand THEIR JARGON, THEIR WORDS, THEIR CONTEXT, so speak THEIR LANGUAGE when you talk to them, Jim, so they understand what you are saying. 🙂

Good luck and God speed.

Renee

The issue with Support Groups is that I've discovered is the what I've termed the "Me Problem." People attend support groups for "me." Everyone. They are there for themselves, hence the term "support."
I'm not saying that's a bad thing either. I'm simply saying when you go to a group expecting to get "support" and everyone there is doing the same thing, you're not going to find it. It's like showing up to restaurant as the chef and all the guests are chefs. Everybody has a ton of recipes and ideas and things to cook up but nobody is providing the way to the kitchen, they're just supposed to hash it out amongst themselves and make the same mistakes over and over again.
And when the Master Chef comes in the dining room to offer advice? He's attacked for not being in the trenches.

After living with my husband's pain for the last fifteen years, I learned NEVER to say the words, "I understand." How on earth could I understand the torment that man lived with? I'd watch him get up and literally crawl across the floor into the bathroom because it was too painful to walk. He'd take his shower and I'd hear him throwing up as he got dressed and then he'd emerge from the bathroom, kiss me on my cheek, ruffle my hair as if nothing was wrong and disappear into the work day.
I STILL hear him throwing up in the morning from his pain, but now I hear his sobs from my recliner in the den because I can't lie flat beside him due to my own pain shimmering down my legs 24/7. Now, he doesn't leave for work and neither do I. Two careers gone because lives of pain took their place. Lives of intimacy gone only to be replaced by mornings of agony.
How do you share such things with people who only learn about blood pressure, heartrates, and scales as measurement of pain? You don't. You simply say my pain is 9 because if it was a 10, I'd be in the hospital.