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.

@pfbacon

Thank you all. I'm not depressed, just can't take the pain any more. When military prisoners are tortured, they look for something sharp to cut their veins with when they can't take the pain any more. That's just what humans do. The pain must be stopped when it can no longer be endured. I wish politicians would think about this before they made draconian laws restricting what doctors can do for their patients. I had a good life, I don't have young children or grandchildren. I have friends and a husband but they are not dependent on me. I still need to know about euthanasia. I knew Doctor Kavorkian's cousin, Chevalia, but they have both passed away. PS I understand about the difficulty of getting medicine. The whole country seems to have gone kookoo about opiates - everyone who says the word 'pain' is considered to be an addict and a criminal until they prove themselves innocent. Peggy

Jump to this post

Hi
I know how you feel. I too have neuropathy and constant pain. I’ll be praying for you dear lady xxx

REPLY

to @pfbacon please look further for pain management. I truly understand what you are saying. Pain, pain and then more pain. It makes a person want to quit. Maybe it can make us fight stronger and longer. I know nothing about your situation besides the pain. That I understand. Sometimes pain is intensified by the pain. This makes sense to me. The more frustrated, angry, resentful we get the more the pain works on us. We not only need pain meds to rid the pain we also have to fight with our frame of mind. The more depressed, angry and the more I bottle up my feeling. the more intense my pain gets. Pain knows us. It is like the devil. It gets in when we give it any opening. I cannot tell you what to do but I can suggest some things I am willing to try because I recently found myself saying "I;m done" I am going to try acupuncture and return to grief counseling. I have stuffed my feeling and the pain came in like the devil. I am not naive enough to think this will be the end of my pain but I am going in with the believe that I am fighting this demon back. Please stay with us. Please give us more information about yourself. We care.

REPLY
@pfbacon

Thank you all. I'm not depressed, just can't take the pain any more. When military prisoners are tortured, they look for something sharp to cut their veins with when they can't take the pain any more. That's just what humans do. The pain must be stopped when it can no longer be endured. I wish politicians would think about this before they made draconian laws restricting what doctors can do for their patients. I had a good life, I don't have young children or grandchildren. I have friends and a husband but they are not dependent on me. I still need to know about euthanasia. I knew Doctor Kavorkian's cousin, Chevalia, but they have both passed away. PS I understand about the difficulty of getting medicine. The whole country seems to have gone kookoo about opiates - everyone who says the word 'pain' is considered to be an addict and a criminal until they prove themselves innocent. Peggy

Jump to this post

Your right! It’s all about cya ! Some one says you might get addicted! So what? Am 70 !

REPLY

Thank you, that's sweet. I'm not upset, there's just nothing left to try, well, there is one more thing: my pain doctor gave me a rx for a serotonin reuptake inhibitor that has the side affect of doing something for the nervous system, it's Duloxetine. He called it cymbalta but the drug store gave me generic. I will start take one tomorrow. I agree with wilcy (who cares if old people who are terminal get 'addicted'?) and sympathize with brojoe (I don't know what you are doing to stand the pain). And I don't know why the government wants addicts to stop taking drugs. I know a few who quit - it's not that hard. And I know some people who have adult children who live for nothing except drugs - every time they come out of rehab, they head right for drugs, and right back to lying and stealing. They know they will die soon, they want to. I wish the government would just let them have what they want and let their parents stop suffering. Peggy

REPLY

Am going to start medical marijuana tomorrow! Finally got my card! Will be interesting!

REPLY

Pain is unbearable and people not giving proper medication to help ease it is unbelievable. I have pain 24/7. I have found that it is key to relax the mind and body. Unthought medications are necessary you will also always need more so you will have to become mentally tough and find a happy place. Take time for yourself and do and find what makes you happy. It’s been nine years for me I am getting worse everyday but I’m trying to stay calm spend a lot of time with my favorite few people and my cats coco and Smokey that don’t expect anything from me. That’s all I can give. I will hope you turn the corner.

REPLY

@wilcy, Hi there, I notice that you started medical cannabis on Jul 8. You thought it would be interesting. I found it a bit overwhelming and intimidating until I found a "guide(s)" to show me the way. It does take quite a bit of experimenting and self-educating. When you went to the dispensary, were there folks to show you all of the options that might be appropriate for your condition? Of course, you do have to remember that you can always have more but you can never have less so start low and go slow.

In 3 years I have had only 2 episodes where I was loopy. Both involved mixing cannabis with alcohol. Now I know.....you just can't risk it. The loopy does go away in about 3 hours and you will be fine.

At this point, I use tinctures, topicals, and a vape cartridge..... no flowers, beverages or edibles. I have worked out a conservative and reliable strategy called Chris's protocol.

I know that product options have increased since I started. Would you be willing to share what products you are using and how you are feeling? If you have a question or two, I would be happy to help if I can.

Please be safe and protected.......Chris

REPLY
@cocodab

I can’t see being able to come off it unless they come up with new medicine. My condition is getting worse. Simply task are difficult, walk on some days is horrific and I seem to leave the house now less and less. I have allergy to any sulfa type-based medication allergic to now gaban.
No fun waking up like this.

Jump to this post

I also have many allergies to medications. I have Complex Regional Pain Syndrome in both feet and my left knee, as well as small fiber neuropathy from the knees down. Just had nerve studies done and was dx with severe distal sensory and motor neuropathy. Lots of pain involved. Last July I had my second spinal cord stimulator implanted. My first was done in 2012. I seldom take my oxycodone. I also have DDD throughout my spine and see pain management on a regular basis. I find radio frequency ablation rids me of pain from 6 months to two years! I am blessed to have an incredible pain management doctor who is brilliant, suffers from pain himself, is very caring, and has a great positive attitude.

REPLY
@barbbie

I also have many allergies to medications. I have Complex Regional Pain Syndrome in both feet and my left knee, as well as small fiber neuropathy from the knees down. Just had nerve studies done and was dx with severe distal sensory and motor neuropathy. Lots of pain involved. Last July I had my second spinal cord stimulator implanted. My first was done in 2012. I seldom take my oxycodone. I also have DDD throughout my spine and see pain management on a regular basis. I find radio frequency ablation rids me of pain from 6 months to two years! I am blessed to have an incredible pain management doctor who is brilliant, suffers from pain himself, is very caring, and has a great positive attitude.

Jump to this post

Wow sounds like you are going through a lot. Nice to have someone that understand how bad this pain is. Maybe you have to suffer to know it unfortunately. I find myself crying sometimes lie (many times)because you feel alone because no one truly understands what it takes away from you.

REPLY
@artscaping

@wilcy, Hi there, I notice that you started medical cannabis on Jul 8. You thought it would be interesting. I found it a bit overwhelming and intimidating until I found a "guide(s)" to show me the way. It does take quite a bit of experimenting and self-educating. When you went to the dispensary, were there folks to show you all of the options that might be appropriate for your condition? Of course, you do have to remember that you can always have more but you can never have less so start low and go slow.

In 3 years I have had only 2 episodes where I was loopy. Both involved mixing cannabis with alcohol. Now I know.....you just can't risk it. The loopy does go away in about 3 hours and you will be fine.

At this point, I use tinctures, topicals, and a vape cartridge..... no flowers, beverages or edibles. I have worked out a conservative and reliable strategy called Chris's protocol.

I know that product options have increased since I started. Would you be willing to share what products you are using and how you are feeling? If you have a question or two, I would be happy to help if I can.

Please be safe and protected.......Chris

Jump to this post

Got 6 small samples to tests! Will know tomorrow if it works!

REPLY
Please sign in or register to post a reply.