Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy group.

I am new to site. I have sensory, motor and autonomic neuropathy. Does any deal with numbness in feet and up legs, in hands and up arms, and dealing with ringing in ears, dry eyes and mouth, and hair loss? I had a fall June 2021 and brought on neuropathy and never had any symptoms until this time.

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@flower13

I am new to site. I have sensory, motor and autonomic neuropathy. Does any deal with numbness in feet and up legs, in hands and up arms, and dealing with ringing in ears, dry eyes and mouth, and hair loss? I had a fall June 2021 and brought on neuropathy and never had any symptoms until this time.

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Hi @flower13, Welcome to Connect. You mentioned all of your symptoms started after you had a fall in June of 2021. It sounds like your fall may have caused some nerve damage. Did you have a spinal injury as a result of your fall?

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Yes peripheral beautifully neuropathy constantly. It doesn't go away. 4 back surgeries with the first from driving into the pool. It brine my neck so I came up floating on my back until help arrived.

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@johnbishop

Hi @flower13, Welcome to Connect. You mentioned all of your symptoms started after you had a fall in June of 2021. It sounds like your fall may have caused some nerve damage. Did you have a spinal injury as a result of your fall?

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All over all the time. My spine just fell apart after breaking my neck first. I now have a break in my t9. It came from a fall and my disk is sticking inside my spinal canal with muscle and skin saving it from going into the spinal fluid. When it does; complete paralysis.

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@ibelieve2

All over all the time. My spine just fell apart after breaking my neck first. I now have a break in my t9. It came from a fall and my disk is sticking inside my spinal canal with muscle and skin saving it from going into the spinal fluid. When it does; complete paralysis.

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Welcome Geniene @ibelieve2, I see that you responded to my reply to @flower13 and seem to have all of the same symptoms that came after a fall. I can't begin to imagine how painful it is for both of you dealing with all of the problems associated with the nerve damage in the spinal cord. You mentioned having 4 back surgeries. Has your care team or surgeon made any other suggestions that might help provide relief from some of your pain?

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@ahenness

John, I'm new here. 62 y/o F. Dx Nov.2019 with PN hands, toes/feet leg stiffness. I have had the whole gambit, MRI's, etc. Extreme burning in upper arms, on gaba 600mg x4/day, neurotriptiline 40ng x 2/day. I'm now experiencing numbness/heaviness upper thighs. Just saw 2nd neuro, put thru battery of usual tests. Concerned about my upper thighs. Anyone else going thru similar? I'm in Ontario Canada. Had to retire after 30+ years in Healthcare. Not sure what to exoect next.

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Welcome @ahenness, Sorry I didn't see your post sooner. I see from your post in another discussion that you mentioned you are getting about 70% relief from the pain. I know you are not alone in not being sure what to expect next. As much as I read and try to learn about neuropathy I also have some of the same feelings.

I don't have the burning pain but do have the numbness. I posted my story in another discussion here — Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/

The Foundation for Peripheral Neuropathy has a lot of helpful information if you haven't already visited the site — https://www.foundationforpn.org/living-well/lifestyle/

Have you made any lifestyle changes to see if they will help your neuropathy?

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@johnbishop

Welcome @ahenness, Sorry I didn't see your post sooner. I see from your post in another discussion that you mentioned you are getting about 70% relief from the pain. I know you are not alone in not being sure what to expect next. As much as I read and try to learn about neuropathy I also have some of the same feelings.

I don't have the burning pain but do have the numbness. I posted my story in another discussion here — Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/

The Foundation for Peripheral Neuropathy has a lot of helpful information if you haven't already visited the site — https://www.foundationforpn.org/living-well/lifestyle/

Have you made any lifestyle changes to see if they will help your neuropathy?

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Thanks for replying John. It took me over 6 months to get proper pain control. My short term memory is bothering me most from gaba. I'm thinking of increasing neurotryptiline to 50mg x2/day, and scaling back gaba to maybe 400 mgx4 day. Severe sunburn pain in upper arms started 6 months after initial diagnoses. I have PN in hands and feet. I'm borderline diabetic. Follow the diabetic diet. Still learning along the way.

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@sueholdenf

I too don’t get enough sleep , waking during the early hours and that’s it I can’t get to sleep again . It’s awful and I know it makes our medical problem even harder to deal with , thinking of you

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Once your neuropathy gets under control you will find it easier to get sleep at night. The pain and discomfort from the neuropathy keeps anyone up at night and not able to get a good nights rest. Are you currently being treated by a medical provider?

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I don’t see a lot of discussion on using buprenorphine for pain, only traditional narcotics. I switched to it from morphine 4 years ago and have no complaints. One patch lasts 7 days. Here’s the specifics from Journal of Opiate
Management. One key point is that docs need a special wavier to prescribe this for pain management. Your PCP most likely will not have this ‘x’ wavier. This is different from docs who did receive the ‘x’ wavier to begin buprenorphine treatment for drug abuse disorder patients.

Buprenorphine—A review of its role in neuropathic pain by Guy Hans, MD

Abstract

Background: The use of opioids for the treatment of neuropathic pain remains somewhat controversial, since earlier studies indicate that neuropathic pain is generally less responsive to pure μ-opioid analgesia. A growing body of evidence now suggests that different opioids affect different pain pathways, and emerging data support the possibility of a role for buprenorphine in the management of neuropathic pain.
Objective: This article reviews the preclinical and clinical data for the role of buprenorphine in the treatment of neuropathic pain.
Research Design and Methods: Literature searches were carried out using PubMed (1988 to September 2006). Search terms included buprenorphine and neuropathic pain, as well as neuropathy, painful neuropathy, hyperalgesia, and allodynia. Clinical studies and case studies were included.
Results: Several assays, including the formalin, cold tail flick, and diffuse noxious inhibitory control tests, have revealed buprenorphine’s potential efficacy in various pain types. These findings seem to support hypotheses regarding its unique analgesic mechanisms as compared with pure μ-opioids. The exact mechanism of this analgesic efficacy remains unknown. Preclinical assessments of buprenorphine demonstrate its sustained antihyperalgesic effect in several models of neuropathic pain. These findings are supported in clinical studies of oral, intrathecal, intravenous, and transdermal buprenorphine. Furthermore, these studies have demonstrated that, despite there being a ceiling effect for respiratory depression, no relevant analgesic ceiling effect is found with buprenorphine.
Conclusions: Further studies are certainly warranted to identify the clinical neuropathic syndromes that are most sensitive to buprenorphine treatment, and to compare buprenorphine with other opioids in head-to-head trials of neuropathic pain.

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@flower13

I am new to site. I have sensory, motor and autonomic neuropathy. Does any deal with numbness in feet and up legs, in hands and up arms, and dealing with ringing in ears, dry eyes and mouth, and hair loss? I had a fall June 2021 and brought on neuropathy and never had any symptoms until this time.

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Hi – I am very new to this site.
I have idiopathic sensorimotor peripheral neuropathy, got official dx at Mayo in MN in Feb 2020 but been dealing with this since 2016. Started with numbness both feet 2015, drop foot in both 2017, about 70% numbness shins down to toes. Since Aug 2020, unusual sweating upper part of body. I do not have dry eyes, mouth. Small amounts of neuropathy in finger tips. I've heard pinched nerve from a fall can trigger neuropathy.

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Hi every one! New to site. 6/25/2022. I had neck surgery in April 2021. Over a year ago. Now I have the two fingers on my right hand, that I cannot use. I went to an neurological Doctor Who gave me a EMG test. Then, she diagnosed me with having a ALS. She referred me to another doctor to confirm her findings. But, the next doctor felt that he could not say one way or the other whether I had ALS or not. So, that doctor said that because of prior surgeries to my spine and cervical spine, he cannot say for sure. Now they have sent me to an ALS specialist. So far, I have had one blood test, and I'm waiting to have two MRIs. One of my cervical spine and another of my thoracic spine. None of these doctors are close to my home. I live in New Jersey near the Atlantic ocean. And they sent me to an ALS specialist in Philadelphia. We will see what happens. I am certainly getting fed up with this runaround. I had, like I said, next surgery in April 2021.

And like they say, if it looks like a duck, if it acts like a duck. It must be a duck. It had only been one month since my neck surgery, when the third and fourth digit on my right hand acted up.
Remarkable!

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@njed

Hi – I am very new to this site.
I have idiopathic sensorimotor peripheral neuropathy, got official dx at Mayo in MN in Feb 2020 but been dealing with this since 2016. Started with numbness both feet 2015, drop foot in both 2017, about 70% numbness shins down to toes. Since Aug 2020, unusual sweating upper part of body. I do not have dry eyes, mouth. Small amounts of neuropathy in finger tips. I've heard pinched nerve from a fall can trigger neuropathy.

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Hi @njed, Welcome to Connect. I think you are right, a pinched or compressed nerve can cause nerve pain and other symptoms. It sounds like you don't have any pain with your diagnosed idiopathic sensorimotor peripheral neuropathy, just the numbness.

Did your Mayo Clinic neurologist suggest or start any treatments?

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