Living with Neuropathy - Welcome to the group

Thanks Jake! Increasing my gaba by 100mg at a time for a few days, has been how I've gotten to a mere 300mg, three times daily. So yes, if I absolutely have to, I will do that. I'm always thinking of how I can get off this medication but every time I've titrated down on my dose, my pain had become intolerable. Appreciate your input. Have a lovely day, Sunny Psalm 34:1 "I will bless the Lord at all times: his praise shall continually be in my mouth."

Thanks to you wonderful moderators/mentors! My name is Jeannie. I was diagnosed with small and large fiber peripheral neuropathy this year. My neurologist says I have three major contributors to my neuropathy - type 2 diabetes, MGUS (extra proteins in my blood), and genetic neuropathies through my mom's side. I have repeatedly had doctors tell me there is likely a skeletal muscular component, as well, but I have no idea what that might be. I wanted to find a physiatrist but there are literally none in my insurance network. I have been taking 300mg of gabapentin twice a day. My neurologist wants me to add Cymbalta at 30mg/day but I have not started it yet. I am really resistant to adding another medication. I am also resistant to the idea that there is nothing left for me to do other than pain management and monitor progression. Originally, they deemed this slow moving but there has been steady progression of nerve symptoms over the past year. When I saw my neurologist today, he mentioned it is extremely difficult to guess at progression because of the multiple factors. I do have severe foraminal stenosis in my L5/S1 which may be contributing. My neurology doc, pain doc, and PT all believe the back issues are contributing to my pain - the spine doc disagrees. Some days are okay. Other days I am in tears. Not necessarily because pain is so high but because it never goes away. I am usually in the 4-6 pain range but have had it shoot up to an 8 or 9, occasionally. I might still be in a bit of denial. ;-p

I take 600 mg of gabapentin & 60 mg of Cymbalta & the Cymbalta seems to really help to a degree. It takes the dge off & it lets me feel good enough to do my housework for the day. It is not a miracle drug but it helps me to a degree. I personally don't think the Gabapentin is helping me & now I have short term memory & am a ding bat at forgetting things.

@tigreyes2004
Hi
If the gabapentin isn’t working I would get rid of it for sure. Virtually all seizure medicines have memory, balance and other problems associated with them. Some get better after taking it a while but I haven’t heard anyone say that their memory is better after longer term use. Taper off slowly. If you have any withdrawal symptoms go back up to where you didn’t and taper even slower. If you notice it was helping and you can deal with any side effects you can stay on it.
I didn’t take any medication to improve my neuropathy. I took medications to improve other things. The gabapentin I took for seizures never helped my seizures nor did it help the neuropathy so I stopped it. However I did take fentanyl for pain management and it also helped my neuropathy to some degree.
Your memory should improve once you stop gabapentin.
Best of luck,
Jake

Thank you Jake. I know oyur right but it does take the edge off the pain or at least i thin it does. I don't want to increase it but I know other people who have. I think as it progresses you do need to take more but I don't want too. There is nothing else i can take for pain bc i can't take opioids bc of my stomach condition & I won't take Lyrica so what can I take. I smoke a little pot but don't want to rely on that. I keep hoping I will read on hear someone who knows of a great miracle drug to take for this condition.
Take care
Genie

@tigereyes2004 I tapered off gabapentin a year ago, was having fog and memory concerns for several years prior. I've had neuro testing and my brain is better than the first test couple years ago. This is good! I'm using MMJ for pain/anxiety/sleep/seizure help. I love the way it helps and the clarity of thought I have now. I don't vape. Nothing into my lungs and want the best entry into my bloodstream possible. I use a 1:1 tincture, THC/CBD. at night before bed and a bit differently daytime. You can figure out what works best for you, but this combination is really helpful for me. It is expensive, tho. But, I pull back on something else.....Hope this helps some with ideas. Blessings and may your find your best relief! elizabeth

Vietnam Vet with multiple 'gifts' that keep on giving. Damaged spine (combat wound) - 10 vertebra fused. Demyelinating peripheral neuropathy (Agent Orange). Neurologist started me on gabapentin at 900mg and progressed to 3200mg. Added IVIG when pain kept reaching 9+ - helped a lot. Decreases pain for three weeks and then it starts creeping up. Studies have indicated an ability to slow down the disease. Added Amitriptyline 25mg for pain and sleep aid. Neurosurgeon conducted Calcaneus / Tendon Transfer to move my center of balance and to move working nerve to replace dead nerve to keep foot from rolling. Lots of physical therapy to work on gait disturbance. After discussion with orthopedic surgeon who did most of spine work, decided to try a neurostimulator. Although I asked if it would help with nerve pain, no one could provide an answer. Helped tremendously with back pain. Appears to decrease nerve pain. Neurologist and I agreed to try to slowly decrease my gabapentin. After several months I am down to 1200mg per day. Decreased amitriptyline also. Pain is manageable and I plan to continue decreasing meds.

ericd47, God bless you and thank-you for serving to help protect our country. I hope the stimulator brings you much relief and that you continue to feel better; it sounds like you have had very good health guidance so far. Hugs and prayers, Helen

@ericd47, I would like to add my welcome along with @helennicola and other members. Thanks for sharing your story with us. You have certainly had a long journey with pain and neuropathy. I'm glad to hear the pain is manageable and you have a plan you are working on. You might also be interested in reading what other members have shared in the following discussion.

- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Do you mind sharing how you found Connect?

Medical professionals over the years have used Mayo Clinic for second opinions on my issues. Most recently for very low WBC count. Mayo Clinic website is my 'go to' site for medical advice. A friend with MS and I share research articles, looking to see how community is coming along. Running down a web search led me to Connect. And lastly, a niece, Megan Allyse Deets, works for the Mayo Clinic.
Just as an aside, a friend of mine was a trauma surgeon in Bagdad. We met up five years ago and he noticed my gait disturbance. After a discussion, he recommended that I have my right leg amputated below the knee. Said he had seen enough of them that I was better off getting the amputation done sooner and getting used to a prosthetic. No! Not me.