Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

Interested in more discussions like this? Go to the Neuropathy Support Group.

@flipflop52

Hi! I take the Cymbalta but very low dose. Did not want to try Gabapentin. Not diabetic either. I don’t have pain all the time. Shooting shock episodes or creeping type discomfort. My feet just feel terribly dry and ache at times. Plus, they are numb. At night I take Tizanidine at night to take edge off so I can sleep. Listen to music in bed and rub feet, legs and calves with Frankincense and Myrr. I googled feet and hand exercises and found things to do when watching TV. Going to try reflexology massages in about 4 weeks! My doctor gave me a prescription for Lidocaine cream -30 mg. Have not tried it yet as my pain episodes are tolerable.

Hope this helps! 🙏

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I’ve tried all the creams and nothing helps. I’m taking the Gabapentin because Lyrica made me have seizures and Nortriptyline makes me feel like someone is stabbing my.

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@flipflop52

Hi! I take the Cymbalta but very low dose. Did not want to try Gabapentin. Not diabetic either. I don’t have pain all the time. Shooting shock episodes or creeping type discomfort. My feet just feel terribly dry and ache at times. Plus, they are numb. At night I take Tizanidine at night to take edge off so I can sleep. Listen to music in bed and rub feet, legs and calves with Frankincense and Myrr. I googled feet and hand exercises and found things to do when watching TV. Going to try reflexology massages in about 4 weeks! My doctor gave me a prescription for Lidocaine cream -30 mg. Have not tried it yet as my pain episodes are tolerable.

Hope this helps! 🙏

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What is the medicine you take at night? I’m taking 300 mgs of Gabapentin, 100 mgs 3 time per day and 60 ‘mgs of Cymbalta in the morning with my seizure medicines. Keppra and Clonazepam. They also have me on Quetiapine.

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Wow! I take the Tizanandine at night. I also have prescription for Tramadol for pain. I keep trying things. It is so frustrating. I hope you find some relief.

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@elden

I have non diabetic polyneuropathy & the fatigue is crushing. I can do very little but sleep. Is there treatment for this relentless exhaustion? Thanks. Elden

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I have same exhaustion and joint pain- maybe “long Covid”?! Although I test negative! Palo Alto Doctors haven’t got a clue!?! Any pain pill ideas?

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My large peripheral nerves were damaged by vasculitis. I have pain and the tingling and the hot and cold and everything else that happens when you have peripheral neuropathy. Nothing really helps except I sometimes use Aspercreme. My neurologist has also recommended that I use ALA alpha lipoic acid. So I started taking that about six weeks ago. I haven’t seen too much relief from that yet but she wants me to double up and so I’m gonna start that right now. It’s tough when one disease causes another disease and you can’t do anything about it. But I’m learning to live with it and it’s just plain annoying. My arms tingle I feel like I’ve got ants and bugs crawling up and down my arms and legs all the time so I’m constantly sweating at myself after while it becomes funny. I don’t know what else to say. I wish you the best and please know that you are not alone in this.

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I have ms and none diabetic neuropathy.

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Susan, I feel the same. Sorry you have to go through this.

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@rwinney

Good morning @ graysea. Congratulations on doing breathing exercises! Diaphragmatic "belly breathing" is such a bonus in helping calm your nervous system down. Do you practice breathing exercises throughout the day? I used to do belly breathing only when I was at peak pain, but I've learned that scheduling breathing throughout the day helps it become more routine, natural and effective. It really has helped. I even do it in the car at stop lights.

You mention wishing you could exercise while you sleep. Now that would be interesting. My morning stretches are a lifeline, and my body depends on them. What form of exercise do you do? While you're awake that is? 😄 Do you have an exercise routine?

I'm sorry about your fiasco with Gabapentin. No fun. I hope you get situated soon and find stable relief. Will your doctor try Pregabalin (Lyrica) instead?

Mantras are similar to what you said you read...positive quotes and stories. Here's some info on mantras:

"What is a mantra and how is it used?
Mantras are one way to practice mindfulness because we focus on a word or phrase as a way to calm and center the mind. In this sense, mantras help us slow down our brains and allow for more space in breath, mind, and body. Mantra is a Sanskrit word that loosely translates to “vehicle of the mind.”"

You can use a mantra while you are practicing your breathing by reminding yourself of a positive quote that you wish to believe. Muscle memory plays a role.

Meditation, breathing and mindfulness can be all tied together. I like to read positive daily mantras for inspiration and to keep me centered. Believe it or not, I never did any of this stuff until I was forced to find ways of counting on myself for pain management. My friend and fellow mentor @artscaping promoted mindful meditation when I first arrived on Connect. She taught me to welcome pain every morning because it would be my shadow and we'd have to learn to live together. At first, I thought she was craaazzyyy!

Remind yourself that all the meds and doctors in the world can't fix or cure "chronic". They can play a helpful role, but we must assume a part in helping ourselves.

I hope your husband found a wordsearch app. Good for you for staying focused and wanting to help yourself. It's a tall order, but mindset is a very powerful tool. What's next on your list of self-help tools?

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Thank you for your reply.
I often used deep breathing to help me fall asleep. Breathing in, holding
for 4 seconds breathing out for 4 seconds. Concentration on breathing
turning my thoughts from pain.

I have read about mantras now that you mention it. I need to practice them.
I walk daily and I think making positive statements may help me from
letting my mind wander. Walking and stretching seem to really decrease
pain. I don't have certain stretches or exercises but I am willing to try
new things or sequences that anyone suggests.

Gabapentin is a miracle drug for many people. Physicians have such few
drugs to use for neuropathic pain. When I was initially hospitalized for
what I now know as small fiber neuropathy, I was prescribeda taporing dose
of Gabapentin. When I was at 1200 mg I began having slight muscle spasms
and sudden depression. It is hard to explain, but it was frightening and
the doctor tapored me off of Gabapentin. The dark depression lifted and
pain increased. The medication was put on my allergy list. In June of
2021, I was placed back on Gabapentin out of desperation for pain control.
I was told that it was rare that I would experience thevsame side effect.I
had the same side effect. Currently, I work closely with a doctor.
Taporing me off of prednisone and Gabapentin would be very bad for my
health. So I will wait. I tell myself that my feelings often reflect
prednisone withdrawal and Gabapentin. Not my true feeling. I am ok and my
future is going to be wonderful. I pray for patience. I guess maybe that
is like a mantra.
Like I said, Lyrica and Gabapentin are wonder drugs. They help many
people. I just was very unlucky. And am lucky to have a husband and a
doctor to hold my hand during my journey.

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I have neuropathy in my feet as a result of Long-Covid 19 and was wondering if anyone has used neuropathy socks to address the pain?

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@rse77

I have ms and none diabetic neuropathy.

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Welcome @rse77, I know it must not be easy dealing with MS and the the pain from neuropathy.
Have you found any treatments that provide some relief?

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