Living with Neuropathy - Welcome to the group

Hello David, I would have to disagree with you that I 've lost my way. If anything, I have found it more than ever learning so much great information here and having so much encouragement, support, inspiration etc.

I worked in healthcare for 20+ years and have been a patient for about 35. I have many specialists who tell me what a complicated patient I am. As time goes on, I am becoming more and more afflicted.

My career goal was to become a physician assistant aka diagnostic care provider before becoming too ill.

I have tons of diagnostics, procedures, surgeries, etc. I research, research, research until the cows come home bc I love to learn so much.

Before Connect I had no one in my life who could relate to not only my unrelenting severe many types of pain, the self -care to manage a diseased, weak body and the limitations of life. Now I do! So it means everything to me! I am so grateful to have found Connect!

Many blessings to you, Sunnyflower

@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

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

@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

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.

Hey Chris, good to hear from you. I get it what you're saying but it's more the person who is not Afflicted and does not suffer pain that I was referring to.

I find the degrees of pain interesting. I think mental and physical pain can be extremely severe and have you fighting for your sanity.

As I said in a recent reply, I'm very deliberate about not judging or projecting. So I hope you did not feel that I was referring to anything you have said in the past. For one thing, my memory sucks so bad that I probably wouldn't have remembered it had I read that you said it meaning the word discomfort. So no worries! And if I ever do mess up please call me out on it okay? Because it was not intentional and no harm ever, ever meant!

Good to hear from you, Sunny

SCS infection is only for specific types on euro Pain in the periphery. Doctors are trying to use it for fibromyalgia.

@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

@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

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.