Dealing with Neuropathy for Decades

Posted by denisectx @denisectx, Sat, Mar 9 4:37pm

I have been dealing with neuropathy with several time periods of no or limited pain due to medications / surgeries / procedures… but its been 21 years. I fear disability. (I am 55). My neuropathy came from an injury to my left foot. My husband and I own our own company. I was working 7 days a week but have cut back to part days – 7 days a week. I hate the term "disability" – I have made myself walk, concentrating on proper walking (even with great pain)…it has progressed now from my foot up my shin and I am feeling a bit overwhelmed. What has worked for others? I am on Lyrica, Cymbalta, lidocaine cream. I am seeing a specialist about more nerve blocks (I have had 4 previous ones a long time ago – with quite a bit of relief) at the end of this month.

Liked by grandmaR

Hi @denisectx that must be so frightening to see your condition continue to worsen and finding no solution.

I wanted to introduce you to fellow Connect members @grandmar @elained @steeldove and @johnbishop all have experience with different ares of neuropathy and may be able to offer you support and you continue to deal with the pain your neuropathy causes.

@denisectx back to your neuropathy, you mentioned you had four nerve blocks in the past, how long ago was this? How did the doctor's treat them to provide relief?

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@ethanmcconkey

Hi @denisectx that must be so frightening to see your condition continue to worsen and finding no solution.

I wanted to introduce you to fellow Connect members @grandmar @elained @steeldove and @johnbishop all have experience with different ares of neuropathy and may be able to offer you support and you continue to deal with the pain your neuropathy causes.

@denisectx back to your neuropathy, you mentioned you had four nerve blocks in the past, how long ago was this? How did the doctor's treat them to provide relief?

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In the 90s I had lidocaine injected locally when I was desperate and had no idea what was going on. I thought it was from the RSD I had after the severe sprain or the surgery for a neuroma that developed on top of damaged area. But had not heard of neuropathy. Around 2002 I had a series of nerve blocks done at my spine – the last one was supposed to be a permanent one. It lasted 3 years almost before it all started up again when the neuroma returned. Finally had surgery in 2017 when it was getting pretty big and the neuropathy was not being helped by the tramadol any longer. There were other meds tried earlier – OxyContin being the worst

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@denisectx

In the 90s I had lidocaine injected locally when I was desperate and had no idea what was going on. I thought it was from the RSD I had after the severe sprain or the surgery for a neuroma that developed on top of damaged area. But had not heard of neuropathy. Around 2002 I had a series of nerve blocks done at my spine – the last one was supposed to be a permanent one. It lasted 3 years almost before it all started up again when the neuroma returned. Finally had surgery in 2017 when it was getting pretty big and the neuropathy was not being helped by the tramadol any longer. There were other meds tried earlier – OxyContin being the worst

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THE WORST PAIN MED OXYCONTIN I TOTALLY AGREE

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Hello @denisectx, I saw your first post in Living with Neuropathy – Welcome to the Group discussion which was a great place to post your question as it has a lot more members following the discussion. Reading through the discussion you will find how each of us manage to get through the day. Here's a link back to the discussion and my post to you – https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=63#comment-278052

Since you mentioned the neuropathy all started with an injury to your left foot which caused nerve damage I'm wondering if you might benefit from this discussion started by @jenniferhunter

> 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/

Hope you find some answers.

John

Liked by Jennifer Hunter

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@denisectx
Good Morning and Welcome!
I am one of those people John suggested touch base with you.
I have been living with neuropathy for a short time. I have numerous spinal issues that have resulted in 2 successful surgeries (with possibly more in the future). A couple of months before my 2nd surgery, I was sitting and looking at my newly pedicured toes. I noticed that on my right foot, I could not move it very well from side to side. I also noticed that it was difficult to lift my toes. Now, this only happened when my foot was flat on the floor. For years, the big toe on both feet have been a bit numb because of bunions.

I didn't really give my issue a 2nd thought for a while. I had my 2nd spinal surgery, which was a difficult recovery. When I finally recovered, my mind went back to my feet. I now noticed that my left foot did not work right, either. I brought this up to my neurosurgeon. He sent me for a number of tests including MRI, nerve and muscle tests and a painful mylogram. Nothing showed up. He said I presented like I had trauma to my spine. I didn't. My neurosurgeon suggested I see a neurologist for a complete work up. I did. (FYI….it took months before I could get an appointment with a 'good' doc and get the tests). I completed the tests suggested (so far), this week. Next week, I see both the neurologist and seurosurgeon. So far, all I know is that I have significant nerve damage. I guessed that one. The test pinpointed the neuropathy is coming from 2 areas of my spine. In additions, we already knew from previous tests, that my nerves are clustering next to the spine and I still have spinal stenosis.. I am not sure what the next steps will be.

This past week I went for a theraputic massage. The therapist has expeience working with patients with all sorts of back issues. He also works with a PT patients. He worked on me for 80 minutes. When I left, among other things, I can move my toes on my right foot and wiggle my toes on the left foot. I do not expect this to be the entire answer, but I am grateful it gives me some movement. I will continue. Only problem…….I have been sore for 2 days. As they say, 'no pain, no gain.' Of course, they meant exercise, but it seems to work here, too. lol

Best of luck!
Ronnie (GRANDMAr)

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I will move my discussion back to my original post as John suggested…. however to reply:
@grandmar right now I can move my toes but its painful. I keep up PT exercises shown me long ago in which I flex my toes as best I can. I do this while in the bath against the bathroom wall. Its painful but I feel it helps keep my bone / muscles in better shape. I also try my best (unless its super duper painful) to walk normally. I try to be conscious of my gait and how my foot is placed while sitting. I do this throughout the day. If I don't — I tend to turn my foot inward. I resist that to the best of my ability. But at the moment, it is exhausting.
@quiteachiver75 Indeed! Being on oxycontin did not help in the long run and getting off was a type of hell no one should have to go through. But I did. It just took weeks of calling my doctor/pharmacist etc asking "when will this be over?!" – meaning the physical craving for it. I had switched insurance carriers at the time. I wanted to go off oxy but due to the switch I could not wean – so I went from max. amount of Oxy to NONE. Sheer hell for 6 weeks. I thought I would go mad to be both in pain from the neuropathy AND going through withdrawl. That was many many years ago. And I made it without going permanently nuts. Just never again will I take oxycontin.

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@denisectx, sorry I didn't mean to suggest moving your discussion back to the other discussion. I was just wondering if you had seen my post. You are getting good feedback in this discussion so keep asking questions and sharing! We are all about learning about our illness and helping each other. It's great to follow and post in multiple discussions to bring in other members who have symptoms in common.

Liked by Lisa Lucier

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