This condition seems to be different for each of us and different medications seem to work for some of us and not for others -- still, we are sharing information and encouragement and trying to help each other.
When I miss a dose of lyrica or gabapentin, I start to feel unmedicated neuropathy, not withdrawals from lyrica or gaba. It is extremely painful.
My neuropathy, like yours, started out with needle-stick feelings and tingling, then last July it suddenly escalated - it's been getting worse since then and the amount of Lyrica and gabapentin I have to take to keep the pain at bay has been increased to almost the limit of what 'the law' allows.
I don't know what 'the law' expects us to do after we've reached their imposed maximums - kill ourselves? I don't know why we're letting politicians 'practice medicine without a license' at all.
My neurologist says that I need to find a Pain Specialist. So far, I have had no luck finding one that takes medicare plus humana on the east coast of Delaware.
Thank you all for your input. Peggy

@angiepainter
I, too, have CIPN which I developed in the fall of 2017. I have spoken to oncologists and neurologists and read as much as I can, and no one seems to know... it may go away or it may not. I was unable to tolerate the various medications suggested (like gabapentin, lyrica, etc.) so I went to a doctor of Chinese medicine and acupunturist who suggested an herbal pill called Zhi Bai Di Huang Wan which traditionally is given to women going through menopause to cool off their power surges. At last, I could sleep at night!

People in my cancer support group also suggested CBD oil which comes in various ratios to THC and in various forms (soft gels, balms, etc.). The balm was a good short-term help. Topricin's Fibro Cream lasted longer for me (you can obtain it easily on Amazon) which is mostly arnica.

Then I came across a neurology blog in Europe where various doctors were noting their luck with an endogenous fatty acid amide called Palmitoylethanolamide (PEA) for all forms of neuropathic pain, and it has been a life-changer. I take it twice a day (800 mg total; but up to 2,000 mg is often used for CIPN) and it keeps the burning under control (except after aerobic exercise or a glass of wine, both of which seem to set if off). When I first started taking it, I also kept taking the herbs; then could omit the herbs after about 3-4 weeks. Also, last September, I only could find it (unadulterated) in the Netherlands. Now, apparently, there are various U.S. distributors. Even my PCP is taking it for his neuropathy these days after hearing about my success with it. All natural, there are absolutely NO side effects which is a HUGE blessing.

Wishing you luck!

Hi Angie @angiepainter -- welcome to Connect. I also have peripheral neuropathy but I only have the numbness. There is another discussion you may want to join in and meet other members who are discussing chemo induced neuropathy.

> Groups > Cancer > Does anyone have a treatment for Neuropathy due to chemo
-- https://connect.mayoclinic.org/discussion/does-anyone-have-a-treatment-for-nueropathy-due-to-chemo/

I take over the counter supplements that have helped me some and have helped others with the pain from neuropathy. You can read my story here in an earlier post on Connect for what helps me: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You mentioned that you have tried physical therapy. Have you heard of myofascial massage therapy? There is a great discussion here about how it helps with the pain associated with neuropathy and other conditions:

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Angie, I had base of tongue cancer in late 2014. I had Cisplatin chemo and radiation, which ended in mid-December 2014. By March 2015, I had developed numbness and tingling in my hands, which eventually spread pretty much to the whole upper body. Today, I still have the numbness and tingling in my hands and arms, and even into my shoulders and both ears, but fortunately no pain. I have no lower body symptoms at all. I have a significant loss of dexterity, worse on the left side. The right side did improve some over time.
I have had and tried all kinds of treatment from the very start: therapy, medications, tests, acupuncture, etc. It didn’t help. Nothing has helped.
I ran across an article on clinical trials by a company called WinSanTor. They are using a drug based on perinzepine, an existing medication, called WST-057. It is on a fast rack since perinzepine is already FDA approved. Check them out. It has been mentioned in threads on this site. It sounds promising but may not work for everyone.

Hi Angie, I also have excruciating pain from neuropathy in my feet. I have throbbing, jabbing, stabbing, extreme heat, and toes that have very bizarre sensations. I use a CBD salve that I put on my feet that saves me. I do not know what I would do with out it. It is called Ananda Hemp from the Ananda Hemp Company. It is Specturm Salve 125, 25 grams, and if I remember it costs about twenty five dollars. It is from the hemp plant, but contains no THC. I find it fabulous for pain, and believe me, I have tried many things. You can order it on line, and it comes to your house within a week, or less. Perhaps give it a try. My toes are the worst, They tend to stiffen and throb terribly, and the salve just loosens them and makes them feel normal. A blessing from God. Lori Renee