Member Neuropathy Journey Stories: What's Yours?

Hello Susan @susantg, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I am sorry to hear you are in so much pain in your feet and lower legs. Thank you for sharing a little about your journey with neuropathy. I hope you know that you are not alone and there are many members who can relate to your pain. I am happy that you took the first step in looking for information to help you find some relief.

Are you able to share a little more about your neuropathy diagnosis? Is the pain in your legs and feet worse at night or is it the same during the day?

Two and a half years ago after recovering from prostate cancer where I received seed implants and external beam radiation. I’m not sure if that has anything to do with my issue but 3 months later, I started feeling numbness in my right pinky toe. Just the inside of the toe. I have had lower back issues since my twenties because of sports. Sciatica is something I have lived with for many years. The chiropractor has been the answer until now. I had an MRI done not long after in early 2019 that showed a degeneration of my L3-L4, L4-L6 discs with disc herniation and mild Spinal stenosis. I had Physical Therapy, and three epidural injections over the course of several months with no effect on the numbness. One of the steroid injections was at the L5-S1 level and I was unable to walk far without a lot of pain in both hips for about 3 days. The numbness was continuing to spread along my right toes and right side of my foot eventually to the left foot toes too. The toe numbness was and still is only on a certain inside part of the toes. I was experiencing some pain in my back that was resolved with chiropractic visits but there was numbness down my right thigh, and I noticed a sore that was not healing. About a year ago I was able to sleep on my stomach and sides without any problem. Then over the course of the year I could not sleep on my stomach or either side without experiencing numbness down my right leg and foot. I went to a neurologist who did an EMG test and biopsy down my right leg. The EMG showed normal long fiber nerves but less and less short fiber nerve presents down my right leg His diagnosis was idiopathic short fiber neuropathy and prescribed gabapentin. I started to notice some mild numbness in my buttocks and groin area too. In December 2020, the tingling and numbness in my feet had spread to from the toes to my archs. I had a laminectomy in March of 2021 which has helped some back pain but the numbness down my right leg is still there and now the neuropathy has been increasing at a faster pace, with daily increasing numbness in both feet, only the short fiber though. I have good strength in my muscles. I have increasing tingling and numbness up my right calf and shin to the knee. I have lost right knee reflex, but the left knee seems okay for now but there is increasing tingling and numbness in the shin and through my groin and buttocks. I have foot and ankle swelling and I wear compression socks almost daily. I sleep in a recliner in my living room now. Also, wearing tighter pants causes more tingling down my legs. I cannot drive far in my car without feeling numbness creeping down into my feet. The short fiber numbness has increased in both feet to the bottom and heals, pretty much the whole foot and creeping up the legs. It is daily. My surgeon thinks I need more time but I feet like time is running out on finding answers. My neurologist has referred me to USC in Los Angeles. Now he thinks that maybe there is something going on in my pelvis or hips. I never had an MRI of anything but my back. My primary doctor did an ultra-sound of my legs for low blood flow but that appears to be okay. I have been searching the internet for answers and came upon this web forum and I read these stories and it made me very emotional. I have tried to maintain my feelings in front of my wife because she is an extremely emotional person, and I try to keep a positive outlook but that is difficult. The gabapentin, 300mg two to three time a day decreases tingling and numbness, but I am looking for more than just masking this problem. Getting in to see a doctor takes weeks and I get worse it seems every day. It is consuming my life just dealing with it. I have been very active in the past, but this has limited me to just getting by from day to day. Wearing shoes is so uncomfortable so I wear some sandals with good arch supports and a dimple pattern on the soles that have made wearing anything bearable. Any guidance and suggestions are very appreciated.

Hello Susan @susantg, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I am sorry to hear you are in so much pain in your feet and lower legs. Thank you for sharing a little about your journey with neuropathy. I hope you know that you are not alone and there are many members who can relate to your pain. I am happy that you took the first step in looking for information to help you find some relief.

Are you able to share a little more about your neuropathy diagnosis? Is the pain in your legs and feet worse at night or is it the same during the day?

Thank you for responding. I have had pain in my lower legs for a couple of years. I thought it might be from my vertebrae fractures. I told my doctor and they tested me and showed neuropathy. Said it probably is from my spine, not much you can do.now I have extreme pain in my feet and lower legs. My fractures do not hurt when laying down. The Neuropathy is just terrible. I take Tramadol 50 mg. It seems to help. The pain wakes me up off and on all night. I hope I made some sense. I have a hard time talking about this. So thankful for this site and your interest.
Susan

Hi Susan @susantg, It can be difficult to talk about if talking with someone that doesn't understand how painful neuropathy can be. Have you tried any complementary or integrative therapies to see if you can get some additional relief from the neuropathy pain. @artscaping may have some additional suggestions for you that may help. One that comes to mind that she uses is Myofascial Release Therapy (MFR). There is another discussion on that here -- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

The Foundation for Peripheral Neuropathy has a list of Complementary + Integrative Therapies here: https://www.foundationforpn.org/living-well/integrative-therapies/

Reading and learning as much as you can about neuropathy and your type of neuropathy can help you be a better advocate for your health and hopefully find something that is your magic pill to make it all go away.

Hi Susan @susantg, It can be difficult to talk about if talking with someone that doesn't understand how painful neuropathy can be. Have you tried any complementary or integrative therapies to see if you can get some additional relief from the neuropathy pain. @artscaping may have some additional suggestions for you that may help. One that comes to mind that she uses is Myofascial Release Therapy (MFR). There is another discussion on that here -- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

The Foundation for Peripheral Neuropathy has a list of Complementary + Integrative Therapies here: https://www.foundationforpn.org/living-well/integrative-therapies/

Reading and learning as much as you can about neuropathy and your type of neuropathy can help you be a better advocate for your health and hopefully find something that is your magic pill to make it all go away.

There are no magic pills, I'm afraid. I've been searching for one myself..

At the advice of my girlfriend, I’m taking a first step and at minimal, ‘connecting’ with Mayo and all of you (she actually wants me to get away from all of my current doctors and go to Mayo).

My journey began 1 1/2 years ago when I was diagnosed with SFN and plantar fasciitis (in both feet at the same time). Earlier this year, after having Covid/pneumonia, the SFN progressed and started giving me issues once again. This was after spending months during the initial diagnosis to find a medication plan that worked for me. My primary physician started making some changes in medication which seemed to be working and then about 6 weeks ago I started dropping things, getting headaches and experiencing dizziness and severe head rushes and ringing in my ears, along with decreased vision. I ended up going back to my neurologist and they indicated I was having migraines so they put me on a medication for that, and ordered a MRI, along with a balance and auditory testing. I failed most of the balance tests, which I start therapy for next week, and I have mild hearing loss (I’m 51), along with my ears not being equal/balanced for vertigo testing (whatever that means). I have not received results from the MRI back but an odd thing is that I have severe pain to the touch underneath the base of the back of my skull. Not sure if that means anything at all, it’s just weird and very painful.

So as with many, one just never knows where the journey will take you or if you will ever truly find all of the answers or ‘fixes’ you are looking for. For me, and my girlfriend, maybe Mayo is a next best step to helping figure some of this out if the local doctors can’t. My quality of life certainly has diminished over the past 1 1/2 years, but as I continue to tell family and friends, it could be worse.

Thanks for reading everyone!