Living with Neuropathy - Welcome to the group

I was prescribed 25 mg. of Lyrica once daily, then twice daily, then 50 mg. and so on for Neuropathy. After my second dose of 50 mg. in the evening I had a night of chills, unsteadiness on my feet, tiredness, and increased urination. I ceased the 50 mg. dose. My doctor said those symptoms are not common, except for maybe the unsteadiness. I eased back into the 50 mg. dose about a week later and after one dose that night I had the worst leg and foot cramps that I have experienced in my 71 years. Both my legs from the knees down locked up for about five painful minutes. Do any of these symptoms sound familiar to anyone else's symptoms on Lyrica? Maybe I am blaming the medicine and/or dosage for unrelated things, but it sure seems like a coincidence that all this happened after only three doses. Any ideas? Thanks.

It gets worse from their. My neuropathy is from my toe to all the way up to my hips. It’s horrible. The sharp like burning and tingling never goes away. Constantly in pain. I’m not a diabetic so there is no relief in sight.

I still stare at the full bottle of Lyrica a doctor prescribed for me over a year ago, to add to the Gabapentin I’d been taking for 4 years. I didn’t ask for new medication and honestly couldn’t recall why he suddenly wanted to add it. I wasn’t sure what he thought it would improve for me, and I was alarmed at the side effects, especially the one about unsteadiness as you mentioned. I was already unsteady and afraid of falls, so why on earth would I want to add to my risk of falling and handicapping myself more? I’m sure it helps many people with different circumstances, but for me, I wasn’t given any explanation of any benefit I would be given from Lyrica, and it would have needed to be a huge benefit for me to be able to agree to increase my fall risk or endure any of the other side effects. If Gabapentin stops working for me, then maybe I’d consider replacing it with something else, but I’m trying to decrease, not increase, my prescription drugs.

Thank you for your input. I tried Gabapentin a few years ago and felt it did not help and also tried another drug that escapes me at the moment. I felt it MAY have helped some, but I didn't like the side effects and the doctor's solution to that was yet another pill. I would love to find some pain relief that doesn't involve more prescriptions.

Hi, I'm a new member. I'm 61.

My neuropathy journey:
My peripheral neuropathy was originally misdiagnosed as nerve entrapment caused by being overweight, and also as a podiatry concern (tight shoes), then lumbar radiculopathy. It is still undiagnosed. Most of the likely candidates have been at least tentatively ruled-out: I don't have diabetes, and it could have been alcohol related, or brought on by obstructive sleep apnea, but it's progressing too fast for those (especially since my apnea is treated and I stopped drinking). I've had a spinal MRI, an EMG/NCS test and a full neuropathy blood workup, as well as seeing a podiatrist. My neurologists are currently trying to get me admitted to speed up the testing cycle. Their current guess is either auto-immune or paraneoplastic syndrome, but they'll be looking at genetics, heavy metals, and other things as well.

At this point my feet are about 1/2 numb with pain and some muscle loss. My fingers are and hands are starting to go numb, I get tingling and numbness in my calves and thighs, and have some autonomic symptoms (difficulty swallowing being the most concerning), and a few other things. I had very few symptoms last spring - just intermittent big-toe numbness and some thigh pain while exercising. Now I notice new or worsening symptoms almost weekly. If you're new to neuropathy, I wouldn't let this worry you, my doctors tell me it's very rare for it to go south this quickly.

Other than that, I feel fine :).

Anyway, thank you all for sharing your stories and allowing me to share mine. Cheers.

Welcome @larry4343, I'm so sorry to hear that you've joined our neuropathy club. It's good to see you are reaching out and learning as much as you can about your condition. I shared my story in the following discussion along with other members in the community and thought you might find the discussion helpful:
-- Member Neuropathy Journey Stories: What's Yours?
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.
You might also want to take a look at the following sites for learning more about neuropathy:
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/.

You mentioned having new or worsening symptoms weekly. Have you looked into any possible treatments?

Hi John,

I'm taking some multi-vitamins, B12, and alpha lipoic acid. The latter seems like it might help a little. I've been taking Gabapentin for a number of years for Restless Leg Syndrome. I could take more of that, but it doesn't seem to have much affect on the pain (which isn't too bad currently; it's the rapidly progressing numbness that I'm concerned with). I also exercise regularly, and put extra rugs around the house to ease the discomfort from walking.

My neurologist said if it looks like an autoimmune issue, he would probably try corticosteroids or IVIg. I don't know of any other treatments that might be helpful given that the cause is unknown. I saw you posted at some point about The Protocol. Is there anything you think I might be missing?

Tough question for me to answer since I'm really not a medical professional and am kind of in the same boat. I started taking the protocol since nothing else had worked for me and it does seem to have stopped or slowed down the progression which is what my neurologist told me would eventually happen. I have been working more on my overall health since I've mostly been in the pre-diabetes category for most of my life. The past 2 years I've focused on losing weight and maintaining it which has helped with the A1C number. I started focusing on that after learning about the metabolic syndrome and it's possible connection with neuropathy since I fit into the metabolic syndrome. Something doctors don't really talk about much which seems kind of strange.

If you want to read/learn more about it, here are some good references:
-- Diagnosis and Management of the Metabolic Syndrome
https://www.ahajournals.org/doi/10.1161/circulationaha.105.169404
-- The metabolic syndrome – What is it and how should it be managed?
https://journals.sagepub.com/doi/full/10.1177/2047487319886404
-- A comprehensive definition for metabolic syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2675814/
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
-- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/

Hi Larry
So sorry to hear you have neuropathy, it is a very difficult disease to deal with. It has been
Also 1 1/2 year that I was diagnosed with chronic inflammatory demylinating polyneuropathy. At first I started taking a low dose of gabapentin and it did nothing for my pain a year later my dose was increased five times the original dose and my pain is now under control. It took a while to get there but it eventually worked.
You mentioned that your neurologist thought it might be inflammatory in origin, I have found that a healthy diet low in sugar and high in protein has helped me and daily exercise decreases my pain and improves strength in my lower extremities. John sent you a few great neuropathy websites and they helped me immensely.
Hope you and your physician find out what is going on and you feel better soon. Stay in touch.
Kim

My 79 year old mother is dealing with neuropathy. I see commercials daily about clinics for neuropathy. Are these legit or snake oil?