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.
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.
@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.
@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.
I am so sorry @jimhd
@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
@bustrbrwn Pain does take your essence away. Good description. I am so sorry for all of us. 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
I'm so sorry. I am a published author and I don't know how to dial it back. I'll try though.
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
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 😊🙏