What do I do now?

If the gabapentin is helping you, and you’re not experiencing side effects, is that a problem?

Many of the medications used for this type of pain have potentially problematic side effects because they’re targeting something that’s systemic—were messing with nerve signals and neurotransmitters that might impact more than just the pain we feel, so it’s a known risk. It doesn’t necessarily mean the medication is dangerous.

Everyone responds differently and has a different tolerance for risk of effects. I personally choose not to try these types of medications, but that is because I have sensitivity to medications and other underlying conditions I often experience side effects and if I do, it can make other things worse. I’m not worried my life would be in danger or anything, but I’m just uncomfortable with the risk and possible stress if it doesn’t work out.

I’m glad you seeked out a psychologist; I’ve gotten a lot of support from a health psychologist or other therapist with experience in chronic pain. Did you see a health psychologist? Often they can help not just with coping but help you learn strategies and practices to help calm your nervous system, which can also help with your pain.

There are other treatments like physical therapy, graded motor imagery (GMI), topicals. I got the most leverage out of working with a health psychologist and PT with a pain neuroscience approach and GMI. I improved.

I felt really empowered when I learned more about a pain neuroscience approach to treating pain—it’s based on the fact that our brains and nerves have neuroplasticity, meaning we can influence and change how our brains perceive and send pain signals. It’s kind of hard to explain, but I wrote about it yesterday here: https://connect.mayoclinic.org/comment/1149510/

I haven’t personally used the Curable app, but a Mayo PT recommended it to me, and it’s more accessible than finding a chronic pain PT. She also recommended a book called “Unlearn Your Pain.” I have some qualms with these resources but they explain chronic pain in a way that’s accessible.

That’s what gives me hope, that there are ways that are evidence-based that we can influence how we feel pain, even if it doesn’t cure the original issue. But if it gets me back to doing things I enjoy doing, I’ll take that.

But what you’re feeling is real…the panic, worry about the medications, maybe the grief. It’s important to feel what you feel and lean on the people and things that uplift you. And when you’re ready to sort through your options again and move forward, you will.

@cecelia19, Pain can really get you down and it's difficult to stay positive. I'm hoping you can find something that provides more relief. I am glad that @emo brought up brain neuroplasticity. It's an interesting topic and another member @user_che214927 started a discussion on the topic and may also have some experience to share. Here's the discussion:
-- Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/

I just an article on Gabapentin on Yahoo news. I always go to the comments section afterwards. There were MANY comments from people who are on Gabapentin and report a high degree of success with relief from neuropathy. The most common complaint was side effects of drowsiness. Many commenters revealed that it usually diminished and disappeared after a few days of weeks. Dosage was anywhere from 200 mg, 2x a day to 1800 mg 2x a day. I have been taking it off and on for seven years. Except for initail dizzinees, the drug has no side effects. I am currently on 600 mg 3x a day. I helps take the edge off my nerve pain.

Dear @cecelia19
I’ve read that pain, panic mode, bad side, try coping… Our human-life is not easy; some worse or some better.

+++ FOR ME… +++
You take the pain meds; i using ofba large use of this meds; I need it 3 times a day to stop seizer - I need to be an anti-seizer of this med. I had a bicycle accident, one block to my house that caused a TBI member. My life changed 12 years ago.

How about my PAIN? There was no pain until 2 years ago an fell down in my garage wooden-steps; on my 2 rear-ends hit-over-hit and can’t do walking a couple blocks; no more cutting our grass; no more working good thangs outside; no more a lot of thangs.

But, recently a few mths ago, I had a surgery on the back bottom of my read-end. After that, the -pain- is gone! He moved a Nerve back to before that fall-down.

+++ FOR YOU… +=
You know of your “problems” and your needs & feeling - of your body & mind. You wrote this. And folks here have different ways that would help you. You can ask other professional users of what you can and want and how. There’s ideas here. Ask…

Thx,
Greg D. @greg1956

Celia every drug has potential side effects but that doesn’t mean you will experience them. If the gabapentin is helping you consider yourself lucky. There’s no need to avoid it if it is not giving you any ill effects. No one should have to live in misery from pain, so no need to panic or force yourself to give up what is helping you. I hope you are getting decent relief and if not, please talk to your Dr about tweaking the dose, timing etc to get the most relief you can. I’m guessing 90% of people with neuropathy are on gabapentin and thanking their lucky stars it’s available, inexpensive, non addictive, etc. Be gentle and kind to yourself 😀

Thank you so much for this information and encouragement. The drowsiness has declined and I feel very capable of driving. There are people in my life who would rather I not take it but I don’t know how I would get through the day without it.

I wish I could reach out through my screen and give you a big hug. But I can tell you how much your response and multiple recommendations, all new to me, have given me hope. I had never heard of GMI, neuroplasticity or thought to pursue PT. Thank you for providing your Mayo Clinic post. I love how you put this in perspective - “if the Gabapentin is helping you and you aren’t experiencing side effects, is that a problem?” There have been some in my life who mean well but have made me fearful of this medication so I needed to hear this. God bless you for taking the time to impart all of your experience, wisdom and resources in your post to me. I am profoundly thankful for your kindness.

Thank you, John, for providing the link and discussion on this topic. This is an avenue I knew nothing about but am excited to explore. Thank God for this forum and I am so touched by the support I’ve been given by all of you.

Hi cecelia! Nice to have you here. You will get a lot of great information from this bunch here! Much more than your doctor has for you...if you need an answer, stick a question up on Mayo Connect! If you found that something is working for you, stick it up on Mayo Connect to help others. If you are having a great day post a joke or your favorite saying! If you just want to rant, you can rant here too. One size fits all type of Forum!

I have learned to live with pretty severe pain every day. For the past 15 years or so, I have been living with Peripheral Neuropathy, Lymphedema, arthritis of the back/degenerative disc issues, gout...and a few more that could have sent me right to my bed for good. Since I am 84 that would have been the end for me. But it was my choice to find a way live WITH the pain. So some of us do live with "It" even though I am on steroids and several other pain medications....it's complicated but I am learning a lot from this forum too about ways to cope!

Cecelia-
I’m sorry I didn’t comment early. What works for one does NOT work for all, so unfortunately the only way we get to know what works on ourself is through trial and error, often guided by experiences from those in this group, some good, some bad. We almost all have other co-morbidities and medications, so one size shoe certainly doesn’t fit all.

My PN came with the normal numbness & tingling, as well as pain. 8 years ago my Neurologist prescribed the default Gabapentin and have been on it since. We started low and eventually found my sweet spot at 800mg 3x a day. Sometimes I miss a dose and don’t realize it, but that’s rare. That deep rooted nerve pain normally starts surfacing hours after missing a dose so I know that it’s best to stay on schedule to keep the medication in my system to avoid having the nerve pain at all. I hear some folks are able to take it “as needed”, but that doesn’t work for me. If I wait until I need it, sometimes it takes a whole day to get the medication in my system at an even keel.

I am blessed with no side affects of any significance. Does it cause a little brain fog? I don’t know for sure - I just turned 60 yesterday and believe I have the normal amount of brain fog that comes with age, so I’m not concerned. I know there’s no reason for me to stop Gabapentin as it’s been the only thing to help me do as much as I can without having to cope with the pain I had before ever taking it.
I don’t know if you’ve ever tried acupuncture. I had 5 sessions a couple of years ago and found that it helped calm my nerves. It wasn’t sold to me as a lifetime regimen. I wouldn’t hesitate to ever go back for a maintenance session or two if i ever wanted a little extra help, but for now am doing fine with just Gabapentin. I take no other medication for my PN. I hope you find what works for you!