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?

@hertz

I am fighting polyneuropathy with no apparent help from the many doctors I've seen. They seem to do all the correct and accepted treatments and tests; however, I still have unremitting pain. What can I do to help myself??? Would appreciate any hints. Thank you.

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Good afternoon @hertz, I concur with @wilcy. If you want to peruse medical cannabis, I am ready to help you. I have never taken opioids for my small fiber neuropathy (SFN) which is very Poly in its attack areas, (my peripheral body parts.).

My journey also includes about 4 years of research and experimentation. The medical cannabis products have continued to be refined and regulated in adult access states. Please share with us your pain sites and the treatments that you have tried. Then we can make an attempt to understand your needs.

We are not medical practitioners and so can only share what we have experienced. We are happy to do just that. May you be free of pain today. Chris

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I realized that the links I sent earlier did not work properly. They should have been specific to Lidocaine infusions. Let's try this again…
https://www.rxlist.com/consumer_lidocaine_lidopen/drugs-condition.htm

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@johnbishop

Hi @hertz, Welcome to Connect. The best thing you can do to help yourself is learn as much as you can about your health conditions and what others have found helpful. You will get a lot of suggestions from others who share your symptoms.

You may want to check out the following discussion to meet others discussing polyneuropathy.
> Groups > Neuropathy > Anyone been diagnosed with CIDP? It's very rare
https://connect.mayoclinic.org/discussion/has-anyone-on-this-feed-been-diagnosed-with-cidp-its-very-rare/

What have your doctors or neurologists given you to treat the pain?

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I have used both gabapentin and Lyrica.. No side effects to speak of but also no relief. I am getting a referral back to the pain MD.. I had to stop my therapy as it was too painful.

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@artscaping

Good afternoon @hertz, I concur with @wilcy. If you want to peruse medical cannabis, I am ready to help you. I have never taken opioids for my small fiber neuropathy (SFN) which is very Poly in its attack areas, (my peripheral body parts.).

My journey also includes about 4 years of research and experimentation. The medical cannabis products have continued to be refined and regulated in adult access states. Please share with us your pain sites and the treatments that you have tried. Then we can make an attempt to understand your needs.

We are not medical practitioners and so can only share what we have experienced. We are happy to do just that. May you be free of pain today. Chris

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My son brought me cannabis products, at a price! The hemp extract taken internally did nothing, neither did the salve. I used it faithfully. Please don't try and talk me into trying this again, I won't.

Liked by cocodab

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Oil didn’t work! Vaping did!

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Cb oil doesn't work waste of my money

Liked by Leonard

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@hertz

My son brought me cannabis products, at a price! The hemp extract taken internally did nothing, neither did the salve. I used it faithfully. Please don't try and talk me into trying this again, I won't.

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I agree oil waste of money

Liked by Leonard, cocodab

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@hertz

I have used both gabapentin and Lyrica.. No side effects to speak of but also no relief. I am getting a referral back to the pain MD.. I had to stop my therapy as it was too painful.

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Lyrica helped for a while but not anymore! Any advice please help

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@resawaller

Lyrica helped for a while but not anymore! Any advice please help

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@resawaller I have been on a quest for nearly a decade for a medication for my peripheral neuropathy. I've gone through the list my PCP could prescribe, then through the list from my neurologist and I'm down to the end of the list from my pain specialist. Lyrica was the first neuropathy medication that was starting to help until I had a serious reaction to it and was in the hospital for a few days. Two years ago I had a Burst DR spinal cord stimulator implant. After the six week recovery, it was turned on, and I had a taste of what it feels like not to be in pain. Now, two years later, I've concluded that it has become less and less effective. It does help, but my feet are hurting in the 5-8 range.

I've been taking a low dose of morphine sulfate contin for several years and I know that the pain would be much worse without it.

The neurologist and the pain specialist have been really great, and I would recommend seeking help from them.

You can go back through this discussion and see all of the various things people have found helpful. The list is long! Good luck in your search for the right medication.

Jim

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@hertz

My son brought me cannabis products, at a price! The hemp extract taken internally did nothing, neither did the salve. I used it faithfully. Please don't try and talk me into trying this again, I won't.

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The CBD oil under my tongue helped for sleep but then I developed canker sores until I stopped using it regularly. Neither the CBD oil nor the CBD/THC ointments have helped my pain. I just started using the Fibro cream, which seems to provide a little pain relief for a shot time… on a good day. I also use Gabapentin at night.

My most consistent pain relief is 600mg of Advil ( not generic Ibuprofen) 3x/day. However the risks of liver problems with that make me do that only occasionally.

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@margottaylor

The CBD oil under my tongue helped for sleep but then I developed canker sores until I stopped using it regularly. Neither the CBD oil nor the CBD/THC ointments have helped my pain. I just started using the Fibro cream, which seems to provide a little pain relief for a shot time… on a good day. I also use Gabapentin at night.

My most consistent pain relief is 600mg of Advil ( not generic Ibuprofen) 3x/day. However the risks of liver problems with that make me do that only occasionally.

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@margottaylor A doctor prescribed either 3 or 4 (I think ir was 4) ibuprofen 3 times a day for me to use indefinitely for some pain, I think it was bursitis. After a while I chose to stop it despite it giving me relief – it just did not seem right to me. I wondered when I developed liver problems, cirrhosis, if that could have contributed but I was assured that it would not have. So, a high dose taken regularly can cause liver problems? I know that now being post-transplant I cannot take it but I think that is because of some conflict with the immunosuppressants,
JK

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@contentandwell

@margottaylor A doctor prescribed either 3 or 4 (I think ir was 4) ibuprofen 3 times a day for me to use indefinitely for some pain, I think it was bursitis. After a while I chose to stop it despite it giving me relief – it just did not seem right to me. I wondered when I developed liver problems, cirrhosis, if that could have contributed but I was assured that it would not have. So, a high dose taken regularly can cause liver problems? I know that now being post-transplant I cannot take it but I think that is because of some conflict with the immunosuppressants,
JK

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Wow JK… that's terrible. I'm horrified that former doctors didn't warm you about the risks of taking too much Ibuprofen. How long after you stopped taking it (for the Bursitis?) did you develop Cirrhosis? May I asked what your symptoms when you were that lead them to diagnose the Cirrhosis?

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@hertz

I am fighting polyneuropathy with no apparent help from the many doctors I've seen. They seem to do all the correct and accepted treatments and tests; however, I still have unremitting pain. What can I do to help myself??? Would appreciate any hints. Thank you.

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Have you seen a pain specislist? Mine helps me alot with my pain.

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@tjp4

Have you seen a pain specislist? Mine helps me alot with my pain.

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No , just my family doctor

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@resawaller

No , just my family doctor

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@resawaller If you can do it, I think that a neurologist and then a pain specialist could be a big help. They have areas of expertise that a pcp won't have. I'm fortunate that my pcp understands that and refers me to whatever specialist he thinks can help me. I would especially want to talk with a specialist before having a doctor cut into my head!

Jim

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