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.

@rwinney

To be honest with you I began it when my PCP suggested it for pain and anxiety (over not knowing what the heck was wrong with me) and no I do not believe it touches my pain. As evident by being on Lyrica and Norco. I think it helps me with anxiety and depression.

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@tigreyes2004, @rwinney It appears that both of you have been trying to find the best medication for pain, depression, and anxiety and especially as those quests apply to Gabapentin vs Cymbalta.

Since most of us have to deal with all three symptoms, it is interesting to see what works and what doesn't, what side-effects have interfered with the purpose of the medication, and what is the best time of day to take these medications?

Sometimes when changes are made, we wait somewhat anxiously for positive results whether that be the disappearance of side effects or the appearance of pain amelioration. And when they work, we want the positive results to make a difference and last a long time.

Just for the record, after some restless and inconclusive experimenting, I am pretty settled on Cymbalta (duloxetine) 60 mg in the morning and gabapentin,1200 mg before bedtime. We are all so very unique and are bodies seem to march to their own drummer. Can you imagine what our medical providers must filter through for each and every patient? Thanks for posting your information today and please let us know of improvements in pain control or decreases in anxiety and depression which should actually translate to pain reduction.

Have a lovely, breezy afternoon. Chris

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@tigreyes2004

I was changed from gabapentin to Cymbalta & I started with 30 mg & I was just increased to 60 mg & I have been on it for 4 days now & I still don't see any improvement & I was on the 30mg for a month. I sure hope it helps bc I haven't noticed any side effects as of yet.

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I just started the 60 mg and not finding any side effects so far but do feel like it has really helped better than Gabapentin 1200 side effects.

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@artscaping

@tigreyes2004, @rwinney It appears that both of you have been trying to find the best medication for pain, depression, and anxiety and especially as those quests apply to Gabapentin vs Cymbalta.

Since most of us have to deal with all three symptoms, it is interesting to see what works and what doesn't, what side-effects have interfered with the purpose of the medication, and what is the best time of day to take these medications?

Sometimes when changes are made, we wait somewhat anxiously for positive results whether that be the disappearance of side effects or the appearance of pain amelioration. And when they work, we want the positive results to make a difference and last a long time.

Just for the record, after some restless and inconclusive experimenting, I am pretty settled on Cymbalta (duloxetine) 60 mg in the morning and gabapentin,1200 mg before bedtime. We are all so very unique and are bodies seem to march to their own drummer. Can you imagine what our medical providers must filter through for each and every patient? Thanks for posting your information today and please let us know of improvements in pain control or decreases in anxiety and depression which should actually translate to pain reduction.

Have a lovely, breezy afternoon. Chris

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Thank you. Cymbalta & gabapen 1200 mg seems a lot to take. Don't you feel tired all the time? That is the reason I got off the Gabapentin but everyone is different. I'm glad it works for you.

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@rwinney

To be honest with you I began it when my PCP suggested it for pain and anxiety (over not knowing what the heck was wrong with me) and no I do not believe it touches my pain. As evident by being on Lyrica and Norco. I think it helps me with anxiety and depression.

Jump to this post

Thank you. Norco gives me nausea all pain pills do & plus the constipation. I sure hope this Cymbalta doesn't. The Lyrica doesn't give you any side effects?

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@zorrospouse

I just started the 60 mg and not finding any side effects so far but do feel like it has really helped better than Gabapentin 1200 side effects.

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Thank you. I hope it works bc I'm afraid to try other stuff like the Lyrica. I have heard a lot of bad things about that one.A lot of people said they ended up in the hospital.

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@blocker

I am 44 years old and was diagnosed with peripheral neuropathy almost a year and a half ago. This has been a really rough 17 months. There is, so far, no underlying reason that has been determined. I take Gabapentin for pain, Trazodone to help me sleep and recently started Ropinirole for muscle spasms. I began to struggle to walk a few months ago and that has gotten progressively (and rapidly) worse.
I've seen diabetic neuropathy studies and treatments but peripheral neuropathy treatment and outcomes seem, so far, depressing and almost nonexistent.
Gabapentin causes me serious memory issues, and the neuropathy and Gabapentin cause me balance issues, exacerbating my struggles to walk and it's difficult not knowing when I'll suffer a flare so the not knowing makes life difficult to plan for with school aged children.
I often find myself feeling defeated and depressed to think that I will have to live the rest of my life in chronic and unpredictable pain.
Any words of wisdom or advice for someone quite new to this life would be greatly appreciated.

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@blocker, Good afternoon. I can feel and have great empathy for your journey. I am walking right beside you with idiopathic small fiber neuropathy (SFN). My situation is a bit complicated with chronic myofascial pain syndrome (CMPS). Over time, the zaps and electrical shocks continued to wake me up about 5:30 a.m. just so I could have a day of attempts to control pain and numbness in my extremities.

I can sense that you are distressed about the symptoms and also the impact from the very young onset at age 44. I can also just imagine how concerned you are about stopping the PN process before it continues to manifest itself with more aggravating and limiting symptoms.

First, may I suggest.....take your gabapentin in the evening before bedtime (with your medical provider's approval) to have a more restful and uninterrupted sleep.
Second....Discuss your expected outcomes and results with your medical provider and then give him/ her factual and inclusive results about your experience.
Third.....expand your approach to be more integrative with a focus on mind-body connections. For the body, the best solution I have found has been myofascial massage on a weekly basis. Here is the link to the discussion on Connect :

https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

It might be helpful to hear from @jenniferhunter when she has a chance to review your story.

It seems like this is enough for right now. Just know that I understand, and in fact, we at Connect all understand pain, disappointment, and struggle. Today, many of the mentors as well as me, are living a pretty enjoyable life in spite of the existence of a condition for which there is no known cure and only partial containment. Please let us know how your days are going. Chris

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@tigreyes2004

Thank you. Cymbalta & gabapen 1200 mg seems a lot to take. Don't you feel tired all the time? That is the reason I got off the Gabapentin but everyone is different. I'm glad it works for you.

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@tigreyes2004 That is a very good question. Actually, the maximum dose for Gabapentin is 3600 mg. Remember that I take the 1200 mg of Gabapentin at night as I want it to help me sleep. In fact, that was one of the main reasons for moving it to the evening. Also, taking it in the morning was "zombie" time.

Now, as I recall, my Neurologist said that the effects of the gabapentin taken at night will continue to work until mid-morning or mid-day. And that is without side effects. I try to stay busy and not to nap during the day. That is something that we older folks can get caught up in....napping in the day and then not sleeping at night. Thanks for your reply. Chris

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@tigreyes2004

Thank you. I hope it works bc I'm afraid to try other stuff like the Lyrica. I have heard a lot of bad things about that one.A lot of people said they ended up in the hospital.

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I totally agree with you. I was apprehensive as well. I think the hope with any medication is that the good out weighs the bad and we receive the most benefit for our problem. I have looked at It like choosing my battles and what works best for me. It can be a scary and viscous cycle, one I'm sure we'd all prefer not to be in. As Chris mentions, we are all unique and what works for one may not work for another. As John mentions, the importance of research and education is key.

I do have side effects with Norco. I take magnesium to help with constipation. I also do notice between Cymbalta and/or Lyrica I stumble for a word or a name. I don't like that a bit but the relief I receive is worth it to me.

One last thought...
while gaining clarity and knowledge of my multiple diagnosis, the first goal was to find a level of pain relief so I was more apt to comprehend, settle and come to some sort of acceptance in my life. It's a daily struggle and never easy but I think once that happens, then maybe it's easier to see a larger picture and make decisions on whether you don't want to stay on a certain drug or maybe experiment with a new drug or supplement path with a more holistic approach. In the end its up to each individual. I wish you the best and thank you for the opportunity be cause helping you, helps me.

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@johnbishop

Hi @blocker, Welcome to Connect. I'm sorry for your pain. Neuropathy can be a rough journey. I'm hoping the joining the discussion here on Connect and learning as much as you can about your condition will help you find some answers that will help your pain and give you some relief. I have idiopathic small fiber peripheral neuropathy but I only have the numbness with my PN. I've posted my story and what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I do think some forms of mild exercise may help with the balance issues. The Foundation for Peripheral Neuropathy has some information that may be helpful on their site here:
https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/

Is your peripheral neuropathy mostly in your feet and/or legs? @artscaping and other members may be able to share what helps them also.

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Yes, so far its just my legs and feet. Because of the balance issues I struggle to be very active but I recently started a diet and have lost 14 pounds in the hopes that by carrying a bit less weight I can be more active. Thanks for the information, I will definitely check it out!

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@artscaping

@blocker, Good afternoon. I can feel and have great empathy for your journey. I am walking right beside you with idiopathic small fiber neuropathy (SFN). My situation is a bit complicated with chronic myofascial pain syndrome (CMPS). Over time, the zaps and electrical shocks continued to wake me up about 5:30 a.m. just so I could have a day of attempts to control pain and numbness in my extremities.

I can sense that you are distressed about the symptoms and also the impact from the very young onset at age 44. I can also just imagine how concerned you are about stopping the PN process before it continues to manifest itself with more aggravating and limiting symptoms.

First, may I suggest.....take your gabapentin in the evening before bedtime (with your medical provider's approval) to have a more restful and uninterrupted sleep.
Second....Discuss your expected outcomes and results with your medical provider and then give him/ her factual and inclusive results about your experience.
Third.....expand your approach to be more integrative with a focus on mind-body connections. For the body, the best solution I have found has been myofascial massage on a weekly basis. Here is the link to the discussion on Connect :

https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

It might be helpful to hear from @jenniferhunter when she has a chance to review your story.

It seems like this is enough for right now. Just know that I understand, and in fact, we at Connect all understand pain, disappointment, and struggle. Today, many of the mentors as well as me, are living a pretty enjoyable life in spite of the existence of a condition for which there is no known cure and only partial containment. Please let us know how your days are going. Chris

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Chris, thank you so much for your encouraging words, they mean more than you could know. I am the only person I know who has idiopathic neuropathy, I have 2 friends with diabetic neuropathy but not having someone to talk to who understands what I am dealing with can feel lonely. I have an amazing husband who is incredibly supportive and the most caring, thoughtful teen age boys who do everything they can to help me.
I actually take 600mg Gabapentin 2 times a day and 900mg at bed time. It does help but the night time pain sometimes seems unbearable. When I wake it's a rare occasion that I can get back to sleep; I've developed an intimate relationship with coffee. 😉
I'm open to any suggestions and am grateful to have support and understanding from those who truly understand.

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