Living with Neuropathy - Welcome to the group

I am 64 post head and neck cancer. 8.5 weeks of chemo/radiation has triggered plaque psoriasis (entire body) resulting in PA. I have a lot of collateral damage. I too have PTSD/Anxiety. If you are a veteran, the VA might be able to help. The VA has a few different studies ranging from HBOT (Hyperbaric Oxygen Therapy), microdosing MDMA, microdosing psilocybin with very promising results. The AMA and insurance makes HBOT almost impossible to get treatment or out of pocket is about $1000 per treatment and the total treatments are about 30. I feel for you brother, you are in my prayers.

This neuropathy affects us all so differently, and some have accompanying spine issues, others like me do not. My idiopathic PN slapped me very quickly; one day my legs felt weak, then 10 days later I was in a wheelchair, with minimal hand function as well. I lived in the wheelchair for 6 months, before aggressive PT helped me build muscle strength and regain balance. I use my walker when out, but today can walk unassisted short distances and even drive. I still have bad neuropathy and take Gabapentin to help make it tolerable, but hands down, I got better from where I started, not worse, and have been at this plateau for a few years.Like many others here, what I’m trying to do is maintain strength and energy to do anything we might be able to control to maintain our current state and not get worse. Think positive, and borrow from the tips from this group to see what you might be able to do to help stop the slide!

I had a Laminectomy done in Jan 2020 on L3-5 & I was doing well & becomming pain free (in that area of of spine). On march 12, 2020 i got my second of the first two covid shots & went through 3 days of chills & sweats that never really stopped, just changed. Went through all the "rule out" tests & finally saw Neuro & got skin biopsy & SFN Dx in Sept 2020.

Hi! My name is Donna, I am a 61 yr old personal fitness trainer who began having pain in my feet several months ago that progressed to burning in my feet and tingling in my calves. I t has progressed to "weird" sensations in my upper body as well as tingling on my face. I have always taken excellent care of myself. I did have a lumbar fusion in 2018 and my back pain returned last year as well as neck pain. I just figured my sensations were due to my neck and back. I had an appointment with a neurologist yesterday. He reviewed all recent MRI's of my cervical, thorasic and lumbar spine and does not think my bulging discs are causing my issues. After some physical tests he said that it is neuropathy. He did blood work and uranalysis. I will get the results next week. Of course I am full of anxiety since I have no idea what is causing this and what lies in my future. He has me on 600mg gabapentin which I began this morning. I thought it would be a good idea to join a support group as I navigate through unknown waters. Thank you! I have 2 young grandkids and another on the way as well as my youngest daughter getting married in April.....can I ever feel somewhat normal again???

Hi Donna @donnagautreaux, Welcome to Connect. I'm glad you found Connect. It's normal to have anxiety about the unknown especially when you are diagnosed with a condition like neuropathy. One of the best things you can do to help yourself is become your own advocate and learn as much as you can about the condition and available treatments. There are 2 sites that I really like for learning more about neuropathy -
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/.

I tend to agree with you about bulging discs causing some neuropathy symptoms by compressing the nerves. Here's some information on the topic:
-- Radiculopathy: https://www.hopkinsmedicine.org/health/conditions-and-diseases/radiculopathy

When I was diagnosed, I only had numbness in the feet and legs which I let drag on for 20+ years before seeking a diagnosis. My primary care doc tried gabapentin but I only took it for a week and it didn't help so I stopped taking it. Then after a referral to a neurologist and a diagnosis of idiopathic small fiber peripheral neuropathy the neurologist told me what I already knew - there are no medications that help with the numbness. That started my journey here on Connect back in 2016. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

I don't know if you will ever feel somewhat normal again but what I can tell you is that there is a new normal and I'm sure you will be OK once you find it. There is another discussion which I think you might find helpful.
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.

Have you heard of Myofascial Release Therapy?

Neuropathy is not curable.

I live in the Chicago area an my pn symptoms always seem worse. Have you had that experience.

always seem worse in the winter I meant to say

I experience deterioration on daily basis. Did everything possible but have not been able to stop the rapid deterioration

I am 51, fit, and having similar symptoms that began in November. My MRI was normal. Did your doctor check your Vitamin B-12 levels? He probably did, but low B-12 can cause these symptoms and is not part of routine bloodwork. I feel that this has contributed to my symptoms. My neurologist is also testing me for lymes and autoimmune diseases when they recheck my B-12 levels in a few weeks. A nerve study is also in my near future, but after seeing my primary care physician, obgyn, a cardiologist, neurologist, with numerous tests and a trip to the ER, I needed a break. I hope that you can get some answers and relief as I know how frustrating and worrisome this is.