Living with Neuropathy - Welcome to the group

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.

Thank you Elizbeth. Any advise is a help. I just got back from having my breathing test. I also have COPD along with other issues. Actually I am a mess. I just hang in there.
God bless xxoo

Could one of the wise souls on this thread clarify for me why I get pins and needles and hot feet only at night? I have a non diabetic sensory PN triggered by long term B12 deificiency due to autoimmune disorder (intrinsic factor). In fact my feet are cold all days and an hour or two after going to sleep, they catch fire. I recently discovered cold socks (gel pad based) which have been a life saver or I will not be sleeping very much. Amazingly, I am fine once I am back on my feet. I have to assume it has something to do with vertical vs. horizonal orientation of the body. Wish I could sleep vertically! help!!!!

@pkagarwal - Here's one thought -- "At night our body temperature fluctuates and goes down a bit. Most people tend to sleep in a cooler room as well. The thought is that damaged nerves might interpret the temperature change as pain or tingling, which can heighten the sense of neuropathy." - Why Is Neuropathy Worse at Night?: https://health.clevelandclinic.org/why-is-neuropathy-worse-at-night/

Do any of you sometimes feel hot but your temp. is normal? Do you feel out of breath but your oxygen is in the high 90's ? It's happening to me a lot lately, several times a day, and I don't know if that's part of Neuropathy. I might be one or the other or both hot and breathless at the same time but I use the thermometer and the oximeter and I'm normal. The other day I was in a doctor's office, feeling hot and breathless, the nurse took my vitals and said my temp was 97.7 and my oxygen was 98%. I'm sure these symptoms aren't caused by arthritis (the other painful condition I have). I have asthma but I take medicine for it - if it was causing the breathlessness my oxygen count would be lower. I have Axonal Sensory Neuropathy, cause unknown, I'm not diabetic but I am hypoglycemic. Thank you for any information you can add to help me figure out this mystery! Peggy