Neuropathy Pain at Night: What helps?

Good evening @earlamond and I welcome you to Connect. If you are looking for someone who has been there........that someone is me. For a year or so I woke up every morning about 5:30 as the sharp pains went up my legs. I had just been diagnosed with small fiber peripheral neuropathy and knew almost nothing about tackling these pain areas as they developed and sort of blew me out of the water.

My neurologist and I sat down and talked about these types of pain series. They come and go as the neuropathy takes on a different area of the body and a different sensation within the body. He recommended Nortriptilene and gabapentin to try to get me through the night. At about the same time, I was learning about medical cannabis and I told him I wanted to incorporate it into my list of treatments. Just to make it easier, I was also introduced to MFR, Myofascial Release Therapy, and began weekly sessions to tackle fascia that had layered up and was restricted.

I don't remember all of the AHA moments. However, the middle of the leg pains went away and I have never had them again. It seems like that is typical for the progression of neuropathy, especially in the beginning. It has been several years now and my condition has moved on to create other challenges. Right now I have pain in my hands for which I use a topical.

How long have you been keeping company with neuropathy? What have you tried that has been at least somewhat successful? I know and have accepted that there is no cure for neuropathy and that it is progressive. I don't expect anything to work completely....I just want to get the pain to be tolerable and manageable, leaving me with a decent quality of life.

Please let me know when your diagnosis was given to you. What tests did you have? What has a chance to help you at this point?

May you be free of suffering and the causes of suffering.
Chris

I have what I call constant burning toothachey pain in my legs and feet. It is as if I have 3rd degree burns on my legs, and I put tight stockings on over it. My pain is not intermittent. It is there 24/7, idiopathic SFN. Sometimes feels like I am getting stung by thousands of bees over and over again. I was originally on a higher dose of pregabalin and it just wasn't keeping me sane. My neurologist finally wrote a Butran's opioid low dose patch for me three years ago and it changed my life. I have not had to increase my medication and have been stable with a level of 3 pain for the past 3 years. I can sleep thru the night and function in life---- to a point. Everyone talks about addiction, but if there is no cure for this horrible disease, how would they expect us to come off of all this stuff anyway??

I take Gabapentin 300mg at night, as reclining is the only time my neuropathy occurs. Lower legs only and not in my feet. Days are perfect, and at bedtime Gaba stops the pain, burning tingling etc. and I get my 8 hours! I have recently started B12, B1 Benfotiamine, B6 Pyridoxal 5 Phosfate, R Lipoic Acid, and folate with quatrafolic, all daily.I see some improvement after just a few months. We shall see. I stopped Amlodipine as there may be some causal PN factor. My bp is remaining normal!!!!!!.

Forgot!!! I came off my Amlodipine very very very gradually from an already low dose for many years.

@earlamond you will notice that I have moved your post into an existing discussion about neuropathy pain at night to allow you to also connect with other members like @oldkarl and @rwinney who have also been part of this discussion some time ago.

I see that @artscaping and @oliviaflickamay have also joined in to share and ask you some questions so will leave you to reply back to them so they may continue to provide information about your situation.

I do take Gabapentin.....no results.

Hello, @arlenereiss55. Welcome to this discussion. Please tell me more about you and your medical condition so that I may respond to you appropriately. I am going to ask @amandajro, our moderator to help you work to set up a "Getting to Know You? post" so that you can communicate from your own posts.

May you be safe and protected from inner and outer harm.
Chris

I have been diagnosed with Sjogrens/Lupus autoimmune disorders in 2017. Around the same time I began to have a prickly neuropathy all over head-to-toe. It feels like mosquito bites sometimes stings, the pain signals fire off one at a time but can be anywhere on my skin, even in my mouth and throat. It flares up at night but not every night, just a few days at a time then calms down. My rheumatologist originally thought it to be a symptom of Primary Sjogrens Syndrome. I tried Lyrica 75mg but it made me feel tipsy like after 1 beer. I was overly friendly, nothing bothered me and my driving was impaired- I shouldn't have been driving. Quit Lyrica after one dose.

I started seeing a neurologist. He was also interested in my migraine auras and dizziness which he thought to be vestibular migraine activity. He began to believe after a while that my prickly neuropathy was also migraine related. He mentioned Central Sensitivity. In my understanding of it, the brain stem gets over stimulated and amplifies the signals coming in from the rest of the body, so a normal signal feels like a pain signal. My doctor explained that some people (like myself) are sensitive to light, sound, stress. Children who were car sick and couldn't do carnival rides (motion sensitive) are often the ones with migraines as adults. That was me.
The goal of treatment has been to try to calm everything down, slow down and reduce the stress, sleep, drink water. Also I had to get off of caffeine- that has helped so much with the dizziness. For the neuropathy, I started taking Alpha Lipoic Acid 600, got it on Amazon. Started at 1200mg but it gave me too much gastric distress. 600mg works for me. I was in a bad flare up of neuropathy when I began taking it one year ago. I haven't had any problems since. Good luck finding your answers everyone!

Hello @poseymint, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing your experience and what has helped you. You might also be interested in the following discussion:

Central Sensitization - please share your stories: https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/

Do you mind sharing what you were searching for when you found Connect?

Thank you, John. I checked out the discussion on central sensitization. When i found Mayo Connect, I recall that I was searching for information on obesity and osteoarthritis- trying to find some inspiration/ motivation to lose weight to help my knee. The post about neuropathy caught my attention because my attacks of peripheral neuropathy have been so difficult, maddening and caused me to lose much sleep. I mentioned Alpha Lipoic Acid supplements which have been amazing, but I have also made lifestyle changes. I have reduced hours at work, changed my diet to mostly vegetarian/no wheat or sugar, resolved some stressful relationships, began swimming 3-4x week. I am grateful to have found a wonderful neurologist.