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?

Hi @tigreyes2004. If you can take milk of magnesia and prune juice try mixing a dose of MOM and an equal part of warm prune juice. That should help.

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@johnbishop

Hello Diane @sunny2, Welcome to Connect. I also have idiopathic small fiber peripheral neuropathy for over 20+ years but didn't bother to get it diagnosed until a little over 3 years ago when it started progressing up into my legs. I only have numbness and I knew from talking with my primary care doctors there wasn't anything that would help with the numbness.

@artscaping and @annoranna have talked about using Cymbalta (duloxetine) in other posts and hopefully can share their experience with you and any side effects they have experienced. Which side effects of Cymbalta worry you?

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Thank you John. There are so many possible side effects of Duloxetine listed but a couple that jumped out at me are liver damage and serotonin syndrome (it says this condition can be life threatening) and these are listed under Common Possible side effects. I know each person responds differently but I was curious what others who used it say about it, positive and negative. I realize that their experiences won’t necessarily mirror mine.

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@sunny2

Thank you John. There are so many possible side effects of Duloxetine listed but a couple that jumped out at me are liver damage and serotonin syndrome (it says this condition can be life threatening) and these are listed under Common Possible side effects. I know each person responds differently but I was curious what others who used it say about it, positive and negative. I realize that their experiences won’t necessarily mirror mine.

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Hi Diane
Welcome! Happy to have you join the group. I began with 30mg of Duloxatine over a year ago and for me the toughest challenge was nausea and feeling tired. After a week I told my a Dr my worries and he said just give it another couple of weeks. I ate saltines, chewed mint gum and pepto tablets. Inevitably I got through the challenges but it took me a solid month. Eventually increased to 60mg and took in the evening to sleep off unwanted effects. I guess I was so desperate for the first step of help that I really stuck it out. Now that I receive other combinations of treatments for pain and I feel more in control mentally with my diagnosis, I often think of weaning off. Honestly though am concerned to do so in case it back fires and I feel the need to get back on and go through the readjustment process. Long term goal is always to reduce or replace unnecessary drugs…just don't know, how I will know??? Feel well today.
~Rachel

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@sunny2

Thank you John. There are so many possible side effects of Duloxetine listed but a couple that jumped out at me are liver damage and serotonin syndrome (it says this condition can be life threatening) and these are listed under Common Possible side effects. I know each person responds differently but I was curious what others who used it say about it, positive and negative. I realize that their experiences won’t necessarily mirror mine.

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Good morning Diane @sunny2 and John @johnbishop, A big welcome to you. You are among folks who, while not having a medical background, have personal journeys that can help others. You are asking about Duloxetine. May I ask for what condition you are expecting help from this medication and when in your day you are supposed to take it.

As I understand the reason I am taking it is to start the day without anxiety. As I experienced it…my anxiety about the pain resulted in more pain which resulted in an increase in anxiety and then I was in a loop. Neuropsychological tests confirmed that my memory issues were predominantly a result of anxiety.

For a month I took 20 mg of Duloxetine (Cymbalta) every morning. I had few side effects and what I did get almost immediately was a relief from both pain and mental anguish. Month two I took 40 mg every morning. I may have had some nausea at that level…which was helped with a cup of tea and some nan or skinny toasts. My PCP is just tremendous and together we have a collaborative partnership. She wanted me to go to 60 mg for the same reasons as others have mentioned……..to be prepared for our symptoms to become more challenging.

Can you share what your other symptoms are at this time? My request is always to make sure the dosage is right, the possibility of interaction with other medications or protocols has been evaluated, and the time of day for best relief has been explored.

Regarding the side effects…..my PCP said to take some of that with a grain of salt. Side effects are sometimes listed to fend off legal issues. I probably would spend some time researching the validity of the tests for liver damage. Or, I might just ask John to do that for me and instead…go for a lovely walk along the river. John is our resident research expert. We appreciate his efforts tremendously.

May you have comfort and relief today. Chris

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@artscaping

Good morning Diane @sunny2 and John @johnbishop, A big welcome to you. You are among folks who, while not having a medical background, have personal journeys that can help others. You are asking about Duloxetine. May I ask for what condition you are expecting help from this medication and when in your day you are supposed to take it.

As I understand the reason I am taking it is to start the day without anxiety. As I experienced it…my anxiety about the pain resulted in more pain which resulted in an increase in anxiety and then I was in a loop. Neuropsychological tests confirmed that my memory issues were predominantly a result of anxiety.

For a month I took 20 mg of Duloxetine (Cymbalta) every morning. I had few side effects and what I did get almost immediately was a relief from both pain and mental anguish. Month two I took 40 mg every morning. I may have had some nausea at that level…which was helped with a cup of tea and some nan or skinny toasts. My PCP is just tremendous and together we have a collaborative partnership. She wanted me to go to 60 mg for the same reasons as others have mentioned……..to be prepared for our symptoms to become more challenging.

Can you share what your other symptoms are at this time? My request is always to make sure the dosage is right, the possibility of interaction with other medications or protocols has been evaluated, and the time of day for best relief has been explored.

Regarding the side effects…..my PCP said to take some of that with a grain of salt. Side effects are sometimes listed to fend off legal issues. I probably would spend some time researching the validity of the tests for liver damage. Or, I might just ask John to do that for me and instead…go for a lovely walk along the river. John is our resident research expert. We appreciate his efforts tremendously.

May you have comfort and relief today. Chris

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@sunny2, @johnbishop. I almost forgot …..here's a PS link for the serotonin syndrome from Mayo Clinic.
https://www.mayoclinic.org/diseases-conditions/serotonin-syndrome/symptoms-causes/syc-20354758

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@artscaping

Good morning Diane @sunny2 and John @johnbishop, A big welcome to you. You are among folks who, while not having a medical background, have personal journeys that can help others. You are asking about Duloxetine. May I ask for what condition you are expecting help from this medication and when in your day you are supposed to take it.

As I understand the reason I am taking it is to start the day without anxiety. As I experienced it…my anxiety about the pain resulted in more pain which resulted in an increase in anxiety and then I was in a loop. Neuropsychological tests confirmed that my memory issues were predominantly a result of anxiety.

For a month I took 20 mg of Duloxetine (Cymbalta) every morning. I had few side effects and what I did get almost immediately was a relief from both pain and mental anguish. Month two I took 40 mg every morning. I may have had some nausea at that level…which was helped with a cup of tea and some nan or skinny toasts. My PCP is just tremendous and together we have a collaborative partnership. She wanted me to go to 60 mg for the same reasons as others have mentioned……..to be prepared for our symptoms to become more challenging.

Can you share what your other symptoms are at this time? My request is always to make sure the dosage is right, the possibility of interaction with other medications or protocols has been evaluated, and the time of day for best relief has been explored.

Regarding the side effects…..my PCP said to take some of that with a grain of salt. Side effects are sometimes listed to fend off legal issues. I probably would spend some time researching the validity of the tests for liver damage. Or, I might just ask John to do that for me and instead…go for a lovely walk along the river. John is our resident research expert. We appreciate his efforts tremendously.

May you have comfort and relief today. Chris

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Hi Chris, are you currently taking both cymbalta and nortriptylene or did you change one for the other? Helen

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@johnbishop

@tigreyes2004 – Nephropathy is a disease of the kidneys caused by damage to the small blood vessels or to the units in the kidneys that clean the blood. Peripheral neuropathy is damage to the nerves outside of the brain and spinal cord (peripheral nerves), often causes weakness, numbness and pain, usually in your hands and feet. It can also affect other areas of your body. More information here:

Peripheral neuropathy
https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061

Diabetic nephropathy
https://www.mayoclinic.org/diseases-conditions/diabetic-nephropathy/symptoms-causes/syc-20354556

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Thank you John. That was very helpful. I also have Stage 3 Kidney disease which is caused bc with my stomach problems, it burns when I drink liquids so I try to avoid them but it causes my GFR to be low so now I force myself to drink & not alcohol either. I don't drink at all.

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@rwinney

Hi Diane
Welcome! Happy to have you join the group. I began with 30mg of Duloxatine over a year ago and for me the toughest challenge was nausea and feeling tired. After a week I told my a Dr my worries and he said just give it another couple of weeks. I ate saltines, chewed mint gum and pepto tablets. Inevitably I got through the challenges but it took me a solid month. Eventually increased to 60mg and took in the evening to sleep off unwanted effects. I guess I was so desperate for the first step of help that I really stuck it out. Now that I receive other combinations of treatments for pain and I feel more in control mentally with my diagnosis, I often think of weaning off. Honestly though am concerned to do so in case it back fires and I feel the need to get back on and go through the readjustment process. Long term goal is always to reduce or replace unnecessary drugs…just don't know, how I will know??? Feel well today.
~Rachel

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Thank you Rachel @rwinney for your reply. As in your case, my doctor wants me to start with 30mg of extended release Duloxetine and then later increase to 60mg.it sounds like you are getting relief with other drug combinations which is great. What are the combinations you are currently taking and did you feel that the Duloxetine helped at all before you started another regimen? Hope you are having a good day!

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@artscaping

Good morning Diane @sunny2 and John @johnbishop, A big welcome to you. You are among folks who, while not having a medical background, have personal journeys that can help others. You are asking about Duloxetine. May I ask for what condition you are expecting help from this medication and when in your day you are supposed to take it.

As I understand the reason I am taking it is to start the day without anxiety. As I experienced it…my anxiety about the pain resulted in more pain which resulted in an increase in anxiety and then I was in a loop. Neuropsychological tests confirmed that my memory issues were predominantly a result of anxiety.

For a month I took 20 mg of Duloxetine (Cymbalta) every morning. I had few side effects and what I did get almost immediately was a relief from both pain and mental anguish. Month two I took 40 mg every morning. I may have had some nausea at that level…which was helped with a cup of tea and some nan or skinny toasts. My PCP is just tremendous and together we have a collaborative partnership. She wanted me to go to 60 mg for the same reasons as others have mentioned……..to be prepared for our symptoms to become more challenging.

Can you share what your other symptoms are at this time? My request is always to make sure the dosage is right, the possibility of interaction with other medications or protocols has been evaluated, and the time of day for best relief has been explored.

Regarding the side effects…..my PCP said to take some of that with a grain of salt. Side effects are sometimes listed to fend off legal issues. I probably would spend some time researching the validity of the tests for liver damage. Or, I might just ask John to do that for me and instead…go for a lovely walk along the river. John is our resident research expert. We appreciate his efforts tremendously.

May you have comfort and relief today. Chris

Jump to this post

Hello Chris @artscaping and I appreciate your reply. The foremost reason the doctor prescribed Duloxetine was to, hopefully, help alleviate the tingling/burning sensations present mainly in my feet and lower legs and to a lesser extent arms and fingers. Relieving anxiety would be a plus as I do understand what you are talking about with the anxiety loop. I am to take a pill once daily but a time is not specified.
When your Dr. told you to take the listing of side effects with a grain of salt I think mine may have been saying something similar when he said to me…”after you read about the side effects you won’t want to take it.”
It’s nice to have John as a resident research expert — a valuable resource! Hope you had a lovely walk.

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@jakedduck1

@jimhd
I never used the lidocaine cream but I used lidocaine spray for my tongue and cheeks. It worked good but didn’t last long.
I admire your resilience, that must be excruciatingly painful. I was/am very lucky that I never had the problems with anything touching my feet. Do you use Orthotics? I had some made when all this first started. They helped but needed lots of cushioning. Do you ever fall down. I always fell down if I walked to far, by far I mean the length of the mall. Thankfully that is better too. I have size 13 shoes too. You’d think my balance would be good as long as they are. They look like clown shoes.
Take care,
Jake

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@jakedduck1 The lidocaine I got on Amazon is called Uber Numb, and I agree that it's a temporary fix and doesn't eliminate the pain. I've never tried orthotics, just put in as much insole as will fit.

I fall occasionally, totally out of the blue. My right knee just turns to jello. Ligaments in my left ankle were stretched and torn from rolling my ankle too many times, so the orthopedist repaired it and screwed a permanent ankle brace inside. I'm still getting over that surgery after 4 months.

Yeah, I don't walk nearly as much as I used to. I used to out shop my wife but now I go wait in the car until she's done. If I have to go very far on our property I ride my mower.

I'll add the orthotics to my list of things to ask the pain specialist when I see him Monday.

Jim

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@tigreyes2004

That you for that info. I am a senior so that is good Medicare will pay for it. The Mir a Lax is a little expensive. What do you think of milk of magnesia?

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@tigreyes2004 If I remember correctly, I didn't like it

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@sunny2

Hello Chris @artscaping and I appreciate your reply. The foremost reason the doctor prescribed Duloxetine was to, hopefully, help alleviate the tingling/burning sensations present mainly in my feet and lower legs and to a lesser extent arms and fingers. Relieving anxiety would be a plus as I do understand what you are talking about with the anxiety loop. I am to take a pill once daily but a time is not specified.
When your Dr. told you to take the listing of side effects with a grain of salt I think mine may have been saying something similar when he said to me…”after you read about the side effects you won’t want to take it.”
It’s nice to have John as a resident research expert — a valuable resource! Hope you had a lovely walk.

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@sunny2 Cymbalta was one of the many meds I've tried. I don't remember any side effects, but it didn't help with the pain. I concur with others that the warnings are always pretty extreme. I take several meds that warn about serotonin syndrome, but I think you'd have to take a lot of those meds to approach the syndrome.

I always read the paperwork that comes with medications, and have seen that the risk lists and the interaction lists are nearly identical for lots of meds. I agree with the point that a lot of the warnings are quite a remote possibility and they're there to squeeze out of possible litigation. Unfortunately, though, I have experienced enough of the side effects that I do look out for them.

Jim

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@helennicola

Hi Chris, are you currently taking both cymbalta and nortriptylene or did you change one for the other? Helen

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Good afternoon @helennicola, Wow, you remembered that? Very impressive. At this point, the answer is yes. cymbalta in the a.m. and nortriptyline at bedtime. According to my PCP, nortriptyline is an older medication and may not work as well. So I will see her again next month when we will do an evaluation of medications and my sparkly body conditions. I would like to say goodbye to nortriptyline…..however, I sleep well now and have absolutely no zappers/shock waves and the burns under the skin have diminished measurably. The only irritation is additional constipation. What do you think about this issue? I would appreciate your feedback. May you have some relief today. Chris

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haha, yes I remembered! I try to avoid anything causing constipation having gone through a period of chronic constipation many years ago which eventually went away.I have been on other antidepressants in the past, after my mother passed away and during another difficult time in my life. They worked well for me but I did experience annoying side effects: dry eyes, hair loss, palpitations, headache, which I could overlook until I thought I didn’t need them anymore. For now, I am hoping the gabapentin and supplements are all I need. I wish you continued success with your wonderful sounding neuro and may you continue to enjoy something every day.

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@sunny2

Thank you Rachel @rwinney for your reply. As in your case, my doctor wants me to start with 30mg of extended release Duloxetine and then later increase to 60mg.it sounds like you are getting relief with other drug combinations which is great. What are the combinations you are currently taking and did you feel that the Duloxetine helped at all before you started another regimen? Hope you are having a good day!

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@sunny2
I took Cymbala for awhile but I didn’t get any relief from it.
Jake

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