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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@donnagautreaux

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???

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Replies to "Hi! My name is Donna, I am a 61 yr old personal fitness trainer who began..."

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?

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.

Thank you so much for the information!

Hello Donna,
I am so sorry you are going through this! You asked "can I ever feel somewhat normal again" and my answer to that is yes you can have a normal life, but it might be different than what you currently have. What I mean is you will have to learn how to manage your pain, either with medications ( as with the gabapentin that your physician has prescribed), with dietary changes, and perhaps with changes in other aspects your life. I think the worst part for me was accepting that I now have a chronic illness, but it took awhile and during this time I read and read and read scholarly articles relating to neuropathy. Physical therapy help me improve my lower extremity muscle strength, occupational therapy assisted in helping me reestablish fine motor movement of my upper extremities and Mayo clinic Connect helped me realize I wasn't alone and many people were also living with this disease. The mentors of this group frequently provide excellent website sites with helpful information and resources. One thing I can't say enough is you must be your own advocate and keep asking questions....... You will have great support with this group. Please keep us up dated on your progress.
Kim

Donna - Just want to follow up on what John Bishop mentioned and what struck me a while back when I first came on board with Mayo Connect is what he refers to as a new normal. That stuck in my head. I have very similar symptoms to John, numbness, poor balance and I have bi-lateral drop foot and I not only found a new normal but what I find is that I must adjust to a changing new normal. My idiopathic PN is different than it was five years ago. We still travel a lot and continue doing many of the same things that we did before my diagnosis. We just do it a little differently, but we do it. Wish you the best! Ed

Hi Donna- welcome to the club 🙂 I second John’s mention of the Foundation for Peripheral Neuropathy’s website. I was started on Gabapentin for terrible nighttime pain (think woken up by a sledge-hammer crashing into your leg). I developed breathing problems on G. (respiratory issues are on the list of side effects). The website and the Mayo Clinic website have suggestions for mindful ways to control pain. Someone told me once the Lamaze method was basically self-hypnosis- I had two kids that way and it worked, so I decided to really try the mindful ways and they really work for me. One less medication off the list feels good. I’ve also been told the new Pain Management clinics lean heavily into the mindful ways too.
I too was very active and now have the weakness, pain, numbness, balance issues. No more badminton with the grandkids, but I can do Red Light, Green Light pretty great 🙂