Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@beckiw814

My name is Becki. I am experiencing severe nerve pain in my left hand. I was diagnosed with peripheral neuropathy about 18 months ago. Within the last two weeks my left hand in particular has gotten much worse. My next appointment with my neurologist isn’t until December. Should I see my primary care doc?

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Hi Becky. Is there a pattern to where your pain is and what makes it better or worse? Is it worse at night? Do different foods increase pain? I have food allergies and if I eat tomatoes, I get pain in my finger joints. Is the pain better or worse with different arm positions? I ask this because nerves can be compressed anywhere by muscles and bones or injuries if your body is out of alignment. For example, I have thoracic outlet syndrome (TOS) which has several possible compression points were nerves are passing through that are on the side of the neck, in-between the collar bone and rib cage, and between chest muscles and rib cage as they go into the arm pit. There are other possible entrapment points in the elbow, etc. Mayo can diagnose and treat TOS, but a lot of doctors miss it and don't understand it. TOS does cause pain and tingling in my hand and arm and has affected circulation making my hand turn blue/ purple and cold. My treatment is physical therapy and my PT is also an expert level MFR specialist trained at the John Barnes Therapy on the Rocks clinic in Sedona. Myofascial release (MFR) is stretching the fascia that binds everything much like yoga does. If you are really tight, it takes a long time to work through the layers of tight tissue until things move properly again. You can look at myofascialrelease.com for information. There can be other causes for TOS like a cervical rib, and there are surgeries for it, but they can cause scar tissue which become a source of fascial tightness that can make it worse. I have TOS and had spine surgery at Mayo on my neck which did make my TOS more painful for awhile, but therapy has me making progress again with the TOS. If you have one side that is worse, that's kind of typical of TOS. A neurologist can evaluate for TOS, but I would look for one in a medical center that treats TOS, and there are not a lot of those. Look at University teaching hospitals. If you can come to Mayo, I would highly recommend it. Mayo also evaluated my TOS prior to my spine surgery, and they look at the whole person. If you want to learn about Mayo, there is a Ken Burns documentary about Mayo Clinic airing Sept 25th on PBS. I would suggest a physical therapy evaluation with an MFR specialist. You can find them on the MFR website or by calling Therapy on the Rocks (because not everyone pays to be listed on the website). This could help narrow down the source on your pain, and if it's caused by a physical problem, physical therapy with MFR can help. Here is some info on TOS https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

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@jenniferhunter

Hi Becky. Is there a pattern to where your pain is and what makes it better or worse? Is it worse at night? Do different foods increase pain? I have food allergies and if I eat tomatoes, I get pain in my finger joints. Is the pain better or worse with different arm positions? I ask this because nerves can be compressed anywhere by muscles and bones or injuries if your body is out of alignment. For example, I have thoracic outlet syndrome (TOS) which has several possible compression points were nerves are passing through that are on the side of the neck, in-between the collar bone and rib cage, and between chest muscles and rib cage as they go into the arm pit. There are other possible entrapment points in the elbow, etc. Mayo can diagnose and treat TOS, but a lot of doctors miss it and don't understand it. TOS does cause pain and tingling in my hand and arm and has affected circulation making my hand turn blue/ purple and cold. My treatment is physical therapy and my PT is also an expert level MFR specialist trained at the John Barnes Therapy on the Rocks clinic in Sedona. Myofascial release (MFR) is stretching the fascia that binds everything much like yoga does. If you are really tight, it takes a long time to work through the layers of tight tissue until things move properly again. You can look at myofascialrelease.com for information. There can be other causes for TOS like a cervical rib, and there are surgeries for it, but they can cause scar tissue which become a source of fascial tightness that can make it worse. I have TOS and had spine surgery at Mayo on my neck which did make my TOS more painful for awhile, but therapy has me making progress again with the TOS. If you have one side that is worse, that's kind of typical of TOS. A neurologist can evaluate for TOS, but I would look for one in a medical center that treats TOS, and there are not a lot of those. Look at University teaching hospitals. If you can come to Mayo, I would highly recommend it. Mayo also evaluated my TOS prior to my spine surgery, and they look at the whole person. If you want to learn about Mayo, there is a Ken Burns documentary about Mayo Clinic airing Sept 25th on PBS. I would suggest a physical therapy evaluation with an MFR specialist. You can find them on the MFR website or by calling Therapy on the Rocks (because not everyone pays to be listed on the website). This could help narrow down the source on your pain, and if it's caused by a physical problem, physical therapy with MFR can help. Here is some info on TOS https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

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Jennifer,
Thanks so much for all of the information. Foods do not seem to affect me. I have been waking up with severe nerve pain in my left hand. It seems to begin at my lower cervical spine, up around my shoulder and down the left arm to my finger tips. I am NOT diabetic. Although I wake up due to the pain it comes and goes with different levels of pain through the day. I think I’m going to call my primary care physician tomorrow because I cannot get into my neurologist until December.

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@beckiw814

Jennifer,
Thanks so much for all of the information. Foods do not seem to affect me. I have been waking up with severe nerve pain in my left hand. It seems to begin at my lower cervical spine, up around my shoulder and down the left arm to my finger tips. I am NOT diabetic. Although I wake up due to the pain it comes and goes with different levels of pain through the day. I think I’m going to call my primary care physician tomorrow because I cannot get into my neurologist until December.

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Hello @beckiw814, Welcome to Connect. I see you have already received some great information from @jenniferhunter. I have small fiber PN with only numbness for a symptom in both feet and into my ankles. I also have polymyalgia rheumatica that is currently in remission. One of the symptoms I've had in the past when it came back was waking up with pain and stinging in my left arm and hand. My primary care physician thought it might have be a pinched nerve when I told her I mostly sleep on my side and was always sleeping on my left side when I would wake up with the pain. After the PMR went into remission I stopped having trouble with it when sleeping on my left side. Mayo Clinic has some information on pinched nerves on their website:
https://www.mayoclinic.org/diseases-conditions/pinched-nerve/symptoms-causes/syc-20354746

@beckiw814 can you let us know if you learn anything else from your primary car doctor?

John

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@johnbishop

That makes 2 of us that didn’t know what a laminectomy is…here’s a good overview:

http://www.mayoclinic.org/tests-procedures/laminectomy/basics/definition/prc-20009521

John

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I am approved for nerve stimulus therapy. Just need courage to go through with it to hopefully get my brain and nerves to fire with accuracy. This is in conjunction with my peripheral neuropathy. If it works, they want to implant a device to riid me of numb feet and cure balance to normal?? My name is Sophia86 but I do not see me in the neuropathy group. Thank anyone who may reassure me. Gratefully, Sophia.

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@johnbishop

Hello @beckiw814, Welcome to Connect. I see you have already received some great information from @jenniferhunter. I have small fiber PN with only numbness for a symptom in both feet and into my ankles. I also have polymyalgia rheumatica that is currently in remission. One of the symptoms I've had in the past when it came back was waking up with pain and stinging in my left arm and hand. My primary care physician thought it might have be a pinched nerve when I told her I mostly sleep on my side and was always sleeping on my left side when I would wake up with the pain. After the PMR went into remission I stopped having trouble with it when sleeping on my left side. Mayo Clinic has some information on pinched nerves on their website:
https://www.mayoclinic.org/diseases-conditions/pinched-nerve/symptoms-causes/syc-20354746

@beckiw814 can you let us know if you learn anything else from your primary car doctor?

John

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@johnbishop I will let you know what he comes up with, if anything.

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@sophia86

I am approved for nerve stimulus therapy. Just need courage to go through with it to hopefully get my brain and nerves to fire with accuracy. This is in conjunction with my peripheral neuropathy. If it works, they want to implant a device to riid me of numb feet and cure balance to normal?? My name is Sophia86 but I do not see me in the neuropathy group. Thank anyone who may reassure me. Gratefully, Sophia.

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Hello @sophia86, I think the unknown can always be a little scary. If it were me and there was a possibility of getting a little bit of normal back, I would try it.

@sophie86, are you able to share a little more specific information about the device they want to implant and where it will be implanted?

John

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@sophia86

I am approved for nerve stimulus therapy. Just need courage to go through with it to hopefully get my brain and nerves to fire with accuracy. This is in conjunction with my peripheral neuropathy. If it works, they want to implant a device to riid me of numb feet and cure balance to normal?? My name is Sophia86 but I do not see me in the neuropathy group. Thank anyone who may reassure me. Gratefully, Sophia.

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@sophia86 That sounds fascinating! What exactly is nerve stimulus therapy, and where is that procedure done?

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@steeldove

@sophia86 That sounds fascinating! What exactly is nerve stimulus therapy, and where is that procedure done?

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rior to this implant of nerve stimulator device will try to do this by neurologist making this happen. And determine whether firing of nerve more accurately will get rid of numbness, etc. if it could help my symptoms. I haven't received information other than that. If insurance approves the surgery, then I be I will be given details regarding surgery. The device will be placed in my back under my skin. This seems to be as bit complex, with h{\rtf1\ansi\ansicpg1252
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{\colortbl;\red255\green255\blue255;\red238\green238\blue238;}
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\f0\fs34 \cf2 \expnd0\expndtw0\kerning0
\outl0\strokewidth0 \strokec2 \
}ealing and all it involves

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@sophia86

rior to this implant of nerve stimulator device will try to do this by neurologist making this happen. And determine whether firing of nerve more accurately will get rid of numbness, etc. if it could help my symptoms. I haven't received information other than that. If insurance approves the surgery, then I be I will be given details regarding surgery. The device will be placed in my back under my skin. This seems to be as bit complex, with h{\rtf1\ansi\ansicpg1252
{\fonttbl\f0\fnil\fcharset0 .SFUIText-Regular;}
{\colortbl;\red255\green255\blue255;\red238\green238\blue238;}
\deftab720
\pard\pardeftab720\partightenfactor0

\f0\fs34 \cf2 \expnd0\expndtw0\kerning0
\outl0\strokewidth0 \strokec2 \
}ealing and all it involves

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Hello @sophia86, @steeldove and others — I'm wondering if it's the same type of device others have mentioned to treat chronic back pain and PN. I did find some information that sounds like it might be the same kind of treatment:

American Association of Neurological Surgeons – Spinal Cord Stimulation
https://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Spinal-Cord-Stimulation

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I know that a lot of members are worried about losing the ability of driving due to PN in legs and feet. I just saw this article in the latest email from the Foundation for Peripheral Neuropathy that I thought I would share.

Phil’s story: Hand Controlled Driving
https://www.foundationforpn.org/2018/09/17/hand-controlled-driving/

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@johnbishop

Hello @beckiw814, Welcome to Connect. I see you have already received some great information from @jenniferhunter. I have small fiber PN with only numbness for a symptom in both feet and into my ankles. I also have polymyalgia rheumatica that is currently in remission. One of the symptoms I've had in the past when it came back was waking up with pain and stinging in my left arm and hand. My primary care physician thought it might have be a pinched nerve when I told her I mostly sleep on my side and was always sleeping on my left side when I would wake up with the pain. After the PMR went into remission I stopped having trouble with it when sleeping on my left side. Mayo Clinic has some information on pinched nerves on their website:
https://www.mayoclinic.org/diseases-conditions/pinched-nerve/symptoms-causes/syc-20354746

@beckiw814 can you let us know if you learn anything else from your primary car doctor?

John

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@johnbishop My doctor just ordered X-rays of my cervical spine. It is the PAs belief that the neuropathy that I’m experiencing is starting there based on my symptoms. X-rays have been done. Hoping to hear from my doc by Friday regarding results.

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@beckiw814

@johnbishop My doctor just ordered X-rays of my cervical spine. It is the PAs belief that the neuropathy that I’m experiencing is starting there based on my symptoms. X-rays have been done. Hoping to hear from my doc by Friday regarding results.

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Hi @beckiw814, can you let us know when you get the results? I'm hoping they have some answers for you.

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@johnbishop

Hi @beckiw814, can you let us know when you get the results? I'm hoping they have some answers for you.

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Me too! They think it may be a bulging or slipped disc. They said it could also be a pinched nerve from my RA.

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@beckiw814

My name is Becki. I am experiencing severe nerve pain in my left hand. I was diagnosed with peripheral neuropathy about 18 months ago. Within the last two weeks my left hand in particular has gotten much worse. My next appointment with my neurologist isn’t until December. Should I see my primary care doc?

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Hi beckie I posted about my hand surgery in my left hand and I'm new to group about 2 or 3 weeks ago. So I really dont know how to go to these post but have pain in my dominant hand which is my left . They did a ANA test which came out normal but my diagnoses is complex regional pain syndrom/RSD. I has nerve block done but I have not seen a neurologist. No one said I needed too. What should I do. I go back to the doctor September 28

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@cyme

Hi beckie I posted about my hand surgery in my left hand and I'm new to group about 2 or 3 weeks ago. So I really dont know how to go to these post but have pain in my dominant hand which is my left . They did a ANA test which came out normal but my diagnoses is complex regional pain syndrom/RSD. I has nerve block done but I have not seen a neurologist. No one said I needed too. What should I do. I go back to the doctor September 28

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@cyme My rheumatologist had me see the neurologist because I had neuropathy in both hands and feet. I also had a head injury as a child. I cannot get into see my neurologist until December so I went to my family doctor because of the severity of the paiin. I would ask your primary doc if he/she believes that maybe a neurologist could find the root cause of your issues. Good luck.

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