Living with Neuropathy - Welcome to the group

@wilcy You enjoy a few drinks in the afternoon. The relaxing and a dull of pain for a bit is probably as good medicine as any prescribed and has less negative effects than some of the medicines we put in our bodies. Just be sure not to drive a vehicle. Sounds like you have a good diet and are taking needed supplements. When they say alcohol can contribute to neuropathy they are talking about the alcoholic who drinks their meals and are not putting any nutrients in their body. Eat heartily and drink responsibly and enjoy your afternoons.

Tks for reply! Will be interesting Tuesday to have surgeon look at yesterday’s mri!

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?

My name is Diane and I am very happy to have found this group. Even though I have been in the group just a few days I can see how members are caring and supportive. I was diagnosed with idiopathic peripheral neuropathy about 18 months ago but it has only been in the past couple weeks that the burning pain has increased substantially, especially in my feet and ankle areas. When I last saw my neurologist he gave me a prescription for Duloxetine. After reading about the drug and it’s possible side effects I decided not to take it but that was before the symptoms got worse. This may have been a previous topic of discussion but I am wondering if anyone who has tried this drug can comment on his or her experiences with it.

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?

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.

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.

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

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

@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