Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@faithwalker007

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.

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@faithwalker007
Renee, extremely good info in these 3 posts. And so eloquent as usual. Your inputs are so good, although heartbreaking to hear of your and your husband's struggles. Thank you.

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@faithwalker007

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.

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@faithwalker007 my thoughts and prayers are with you and your husband. I don’t have near the pain you do but feel many times each day that I am going to lose my mind. Pain is such an insidious thing that takes your whole essence away from you most of the time.

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@jimhd

@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

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I am so sorry @jimhd

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@bustrbrwn22

I am so sorry @jimhd

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@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

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@bustrbrwn22

@faithwalker007 my thoughts and prayers are with you and your husband. I don’t have near the pain you do but feel many times each day that I am going to lose my mind. Pain is such an insidious thing that takes your whole essence away from you most of the time.

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@bustrbrwn Pain does take your essence away. Good description. I am so sorry for all of us. LoriRenee1

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@faithwalker007

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.

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@faithwalker Renee, your writing cuts me like a knife. You write too well. I can't bare how you describe your life, as it is mine, and all of us here. I have this deep forgiveness inside of me, as people that don't live this, cannot understand it. If they are inappropriate and their responses to me don't quite "cut it," I am happy for them. It means they are well, and for that, I am greatful. No one should understand this, ever. LoriRenee1

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@lorirenee1

@faithwalker Renee, your writing cuts me like a knife. You write too well. I can't bare how you describe your life, as it is mine, and all of us here. I have this deep forgiveness inside of me, as people that don't live this, cannot understand it. If they are inappropriate and their responses to me don't quite "cut it," I am happy for them. It means they are well, and for that, I am greatful. No one should understand this, ever. LoriRenee1

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

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@mayofeb2020

@contentandwell @lioness. I have hip bursitis and S I joint disfunction for a couple of months now, my orthopedic doctor gave me a cortisone shot, then recommended PT. I don't think the shot did much. PT was helpful but it's still there. He doesn't want to give me any more shot. Now I'm feeling discomfort in the other hip. I'm just about giving up. I've not been walking much but today I ventured to Starbucks which took me 40 minutes! Almost twice the time it normally takes. My physical therapists use laser to bring down the inflammation and gave me lots of exercise to do at home. They don't accept my Medicare HMO, but they do give me a cash discount which still costs an arm and a leg. Fortunately my daughter had arranged with them to bill her from now on. I hope I'll get better soon, my next trip to my orthopedic doctor will be for my spinal stenosis which too had gotten worse with all that sitting in the last 9 months. I have never been sedentary in my life until this year. Enough venting, sorry. Just found out my hip doctor is the team doctor for the football team the Chargers!

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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

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@lioness

@contentandwell . I don't blame you I hurt since shot so don't know either it didn't help with entraped nerve pain . I was talking to a lady that has alot also and I did know about turmeric but she said she takes it twice a day and feels good it cuts down on the inflammation . So am going to start that I love it in my Golden milk going to have to get skim milk all that milk fat won't be good for my waistline lol

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Hello Lioness, could you please tell me how much Turmeric/Curcumin (95%) you take daily? I 've been taking Turmeric/Curcumin (95%) for years but don't think it is helping. Maybe I' m not taking enough?
Hope you have some relief today and have a blessed day. Warmest wishes, Sunnyflower 😊🙏

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@lorirenee1

@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

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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.

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