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.

@bustrbrwn22

What happens if my pain doctor takes a urine sample and finds cannabis? They would drop me as a patient

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Hmmmm? I wonder? But cannibis does not interact with anything.
I haven’t seen a pain doc yet. I am thinking I should! As well as a Physiatrist, which I have never heard of til now
So , did the neurologist send you for pain management?
Thanks!

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@luann262

Hi Cathy’
Wow- we have a lot in common. So… I see a neurologist at Yale. Basically, he has just slowly increased the gabapentin to now I’m at the max- I will say if I miss a dose or am late, I can feel it as a nasty reminder so I guess it helps. I worry about what it is doing to my brain. He also put me on 30 mg Cymbalta. It is supposed to help? Maybe with anxiety and depression.
He also prescribed Tramadol, as needed. I’ve been taking it lately every day in the afternoon and again at night. Doesn’t seem to do much but no luck with Aleve or Advil. I got my medical marijuana card and have been using a the/Cbd blend at night. That helps some to allow distraction and some dulling of the general pain. Also my daughter who is a nurse told me about Voltarex cream - helps some. But nothing touches the toes. The ice pick pain is awful as you know! I wish I had Novocain to stick in there! I tried lidocaine cream - nothing. I’ve asked for an mri but neurologist says it won’t show anything. Wonder if there’s something in my lower spine putting pressure on nerves but he doesn’t buy it.
If I had a Mayo Clinic near me, I’d go.
Has yours traveled up your legs? Mine is starting …
Yes! Let’s keep in touch! I finally found someone who understands!
If you don’t have this, you have no idea!
Luann

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Have you tried a product called NerveRenew? I have not tried it but with their ads there are a lot of people who swear by it. It contains several B vitamins, Alpha Lipoic Acid and other natural herbs. I printed out the incredience and showed it to my Neurologist and he said it could not hurt. I am going to order some and give it a try. I am to taking g
Gabapentine and want to get off because it has long term side effects, mainly effecting congnotive function.

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@luann262

Thanks @davehayward1 - where would I find one? It is always so hard to get comfortable while trying to relax. Nights can be tough!

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Search e-bay for "Medi-Rub Massager 2000". There are quite a few. I tried to upload an image but I couldn't figure it out. White with green foot pad

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@johnbishop

Hi @davehayward1, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thanks for sharing a suggestion. Do you use one to help with neuropathy?

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I do. It "masks" the discomfort to a great extent while I am using it. Some may find it a bit too aggressive, in which case they might try placing a towel on top and/or wearing slippers.

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@dipperlip1

Have you tried a product called NerveRenew? I have not tried it but with their ads there are a lot of people who swear by it. It contains several B vitamins, Alpha Lipoic Acid and other natural herbs. I printed out the incredience and showed it to my Neurologist and he said it could not hurt. I am going to order some and give it a try. I am to taking g
Gabapentine and want to get off because it has long term side effects, mainly effecting congnotive function.

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Thanks for acknowledging the potential side effects of gabapentin. I started having seizures about a decade ago from gabapentin so they took me off but neurological testing showed cognitive function deterioration which was most likely permanent. I regained some of the lost cognitive function and through hard work and PT got myself back to where I was physically. Fast forward to today and my new PCP told me gabapentin does not have these side effects so I should be taking that instead of hydrocodone for terrible sciatica and seizure pain. Within 2 weeks I was at the ER twice because her nurse said she could not be paged after hours about pain and to go to the ER for help but continue with the gabapentin. The ER asks me why am I there. They can’t do anything to help me. No follow-up from my PCP about my seizures or ER visits but these ones had my body on fire on the inside with no actual temperature change on the thermometer and loss of control of my limbs that I am slowly regaining control of but still have terrible tremors. I had a follow up with a neurologist who told me to stop the gabapentin now. Within minutes I received a call from one of my PCP’s minions to stop taking it. While these seizures were happening I was calling her office but she would never speak with me. I had to talk to one of her minions ( a different one every time) to seek help to see if I should stop the gabapentin What a waste of money in this telephone game. I was in terrible pain and let them know that but I was calling to see what I should do, stop the gabapentin? Her staff let me know if an after hours call comes in with the word pain in it she was not to be paged but advised to go to the ER if I was having this much pain and symptoms. So I went several times and they always said we can’t help you and they didn’t know why I’d be sent there. The seizures got progressively worse that now I could barely speak and was sobbing hysterically and asked if she could be paged. Nope go to the ER. My husband and sisters thought I was going to die and at this point my husband has to do the talking and he’s very uncomfortable with asserting himself, I usually take care of potentially uncomfortable interactions. I was incoherent and had no control of my limbs. I asked to speak to the AOC on call and was told that honey we don’t page the AOC at 4 in the am so I could come in at 8 am when the AOC starts working. My husband is now crying cause he can’t find any help so off to the ER again as I don’t want my chart to state I did not follow medical advice It was a clusterxxxx. Had follow up visit after with a neurologist who said to stop taking gabapentin now. Within minutes after that visit a different minion of my PCP calls and says I should stop the gabapentin. The timing was suspicious to me. So here I sit with more cognitive function loss, tremors and have to work on my physical therapy. Sometimes the patient does know their body and the doctor should speak to them directly. Sorry for my ramble but I needed to get it off my chest There’s so much more to the story you wouldn’t believe me if I told you. Be careful with medication and know no one knows your body better than you. I did escalate within the hospital system and they let me know it’s up to each individual PCP how they want things to be handled. I asked for the Compliance officer and this manager told me there isn’t one, it actually goes to Medical Records. Funny, I found the Compliance Director and the VP online so will share my terrible experience with them. Nothing will change but I still want to be heard.

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@dipperlip1

Have you tried a product called NerveRenew? I have not tried it but with their ads there are a lot of people who swear by it. It contains several B vitamins, Alpha Lipoic Acid and other natural herbs. I printed out the incredience and showed it to my Neurologist and he said it could not hurt. I am going to order some and give it a try. I am to taking g
Gabapentine and want to get off because it has long term side effects, mainly effecting congnotive function.

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@dipperlip1 I have heard of it but didn’t give it a go. Please let us know how effective this product is for you. I hope you discontinue the gabapentin. Wish you well. Good luck!

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@milesdaviskindofblue

Cymbalta did nothing for me but tear my stomach up I take Gamapetin 4200 mg’s
900 mg 5 times a day I have a Boston Scientific Implant and I still can’t get any relief I too ask for a better pain medication
and was denied it by my pain doctor and my Neurologist its totally ridiculous so what do you do just deal with the pain 24-7 I bet if they had the symptoms they would be on something to give them some relief it’s like pulling teeth to get help. The drug attic’s in our communities did this by selling them on street and now it’s makes hard for people that actually need it to get the pain meds that we all so need

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OMG so true!! I cannot tolerate Cymbalta, made me severely depressed. Can't tolerate Tramadol- PVCs and severe anxiety. The only thing that works for me is Pregababin and an opioid patch. It has helped my pain so much.

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@anstar61
Curious what opioid you use?
Jake

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@bustrbrwn22

What happens if my pain doctor takes a urine sample and finds cannabis? They would drop me as a patient

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That’s a good point, I haven’t come to that yet.

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@bustrbrwn22

What happens if my pain doctor takes a urine sample and finds cannabis? They would drop me as a patient

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I’d recommend you speak directly to them. Many doctors are becoming more favorable to medical marijuana, as long as it is legal in your state.

Also, I’ve researched cannabis extensively. It definitely interacts with many medications, including pain meds. I am on immunosuppressive meds and I have neuropathy, as well as extreme muscle pain due to an autoimmune disease. I’d love to take cannabis for pain. But I can no longer do so as it interacts with one of my immunosuppressive meds.

Cannabis will interact with any medication metabolized by the CYP3A4 or CYP3A5 enzymes, which is more than 50% of medications. Drugs.com is a good app to check for drug interactions.

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