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?

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.

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@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

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@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.

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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.

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@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.

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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.

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@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

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

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@wilcy So…did you also find folks to help you make your selections? I hope it goes well and that you experience some relief. Thanks for checking in with us. Have a restful sleep. Chris

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@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.

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@barbbie, it is great to read that you have a good and trusting relationship with your pain management doctor. Congratulations for making the effort and being a cooperative patient. Sleep well tonight….Chris

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@wilcy

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

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Hope it goes well – keep me posted!

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@cocodab

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.

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For many years I spent probably 60-70% of my day in bed. Pain meds made me tired. My quality of life diminished. Socially, I pulled way back because when others saw my pain they were helpless and I wanted to hide. I tried to continue to work and was in such a brain fog. Fortunately, I had an office and would shut my door and rest on the floor. I pushed thru exercise classes and would get painful spasms that would draw attention. I explained that they would pass and one day the instructor said in front of everyone that I freak her out. I stopped. I’ve never had such pain in my life as I’ve had from shingles. I was 56 at the time and am now 71. The saddest thing is there are many worse off than I am. I fake my way thru social events. Smile, laugh and act like I’m enjoying myself when in reality I just want to be home and in bed.

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This is the place I come because no-one in my life can possibly understand what goes on inside my body with SFN. I find comfort and support just reading through yours posts. Thank you for sharing and helping me make a connection of sympathy, encouragement and guidance.

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@rwinney, Some beautiful and genuine thoughts in your post. Thank you. Chris

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@gmaw4

Hope it goes well – keep me posted!

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So far, not doing anything!

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@artscaping

@rwinney, Some beautiful and genuine thoughts in your post. Thank you. Chris

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Thank you. It's so true though as I sit here crying reading everyones responses and likes. You all do help me. I'm at the hospital now hooked up to my 6th lidocaine infusion, after taking my hydrocodone for comfort and pain relief. I hate taking a narcotic! I'm so against it. I've never drank, smoked or done drugs and here I sit going through the motions with lidocaine that doesn't help this far, just trying to reduce the hydro.

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@rwinney

Thank you. It's so true though as I sit here crying reading everyones responses and likes. You all do help me. I'm at the hospital now hooked up to my 6th lidocaine infusion, after taking my hydrocodone for comfort and pain relief. I hate taking a narcotic! I'm so against it. I've never drank, smoked or done drugs and here I sit going through the motions with lidocaine that doesn't help this far, just trying to reduce the hydro.

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It was such a hard weekend…my daughter's graduation from high school party. I live for my kids and these moments and powered through so much. It didn't kill me but boy oh boy did it all hit me super hard. I had so much pain and moments of removal from the party due to dizziness, over heating, palpitations, and shortness of breath, along with migraine mid day which thankfully Cambia aborts. I just really miss life as it used to be.

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@rwinney

It was such a hard weekend…my daughter's graduation from high school party. I live for my kids and these moments and powered through so much. It didn't kill me but boy oh boy did it all hit me super hard. I had so much pain and moments of removal from the party due to dizziness, over heating, palpitations, and shortness of breath, along with migraine mid day which thankfully Cambia aborts. I just really miss life as it used to be.

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So sorry truly feel for you!❤️

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