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.
Oh yeah Jim, I forgot to say, opiophobia is behind substandard care. The media blows it up everywhere! I don't think you should present or say these words.
Regarding getting in to be seen, if they don't get you in, in a timely manner especially if you tell them your pain is intolerable, I know from when I worked in the hospital and clinic, the magic words to get you in the door were, "are you denying me care"?
You definitely have to choose your words. You don't want any medical provider think you can be a malpractice liability. Then you really won't be able to find any doc to take you as a patient!!
I will be praying it all works out!
Sorry @lorirenee1 and @bustrbrwn22 for using this post to complete my thoughts on the message I just sent to Jim. @jimhd
Renee, please don't dial back! We love you just as you are!!! Eloquent writer. Splendid. Words are everything! Yours help us know you and understand /feel your and your husband's experience. Keep on doing what you do!! 🤗🙏
The opiophobia rules thanks to the media. Substandard care due to media hype. Lord help us all!! @lioness @jimhd @lorirenee1
Thx so much!! So good to know! 😊
Thank you for your kind words again Hank. May I live up to them!! 😊🙏
Again that is for primary care providers not Pain specialists. The DEA is enforcing the guidelines In error. The doctors and patients are the victims of the DEAs stupidity and error. These are not laws to BE ENFORCED.
@faithwalker007 I've had a good relationship with my pcp. There have never been confrontational discussions, and I've just tried to let his lectures about opioids roll off my back. I think he probably knows that I don't agree with him. At my last teleconference I told him about my range of pain level, and that I have less pain if I take mscontin 15mg qid. It's a challenge for me to remember the middle two. I understand that the doctors are in a tough position, trying to balance the limitations imposed on them with helping their patients find pain meds that work.
I haven't understood the mme values, and what they mean. Maybe I should Google it.
I need to read your posts several times so I can absorb everything you've said. You're a walking encyclopedia of medical wisdom.
My eyes are getting tired, so I need to put in my gel drops, put on my chin strap and Bipap mask. I appreciate everything you write.
Jim
One of these days I'm going to figure out a way to get rid of neuropathy pain. So far I am using gabapentin (900 mg four times a day) and diclofenac sodium gel cream. If it's really bad, I put CBD cannabis (not hemp!) cream down then put the diclofenac cream on top of that. Layer it as often as it is needed. I have banished ALL arthritis and fibromyalgia pain with 6 ml of boron three to four times a day. I'll start working on neuropathy soon. It's starting to hurt right now.
@parrotqueen
Hi, just wondering what your experience has been using boron for fibro. We started taking boron (3 mg/day) a couple months ago or more based on some info provided by @onamission . Also wondering how you arrived at 6 ml of boron 3-4 times per day? According to Google, 1 ml = 1g. From that it would seem that you are taking at least 18 g of boron per day. But I must be misunderstanding this because that would be way too much from what I have read.
Thanks in advance for any info you can provide. I am very interested in this. Best, Hank
Totally agree