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?

@mandyschneider0

Hi I had a really bad night two nights ago because a really bad thunderstorm come through I all my symptoms for my head throbbing numbing spiking burning. Does anyone else have this problem during thunderstorm.

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@mandyschneider0 Hi there Mandy……it is all about the barometric pressure. And yes, those symptoms can be related to a specific drop in pressure. I keep a barometric pressure guide on my desktop so that I can check it and prepare. I only think about riding it out. I don't succumb to any medications. I often end up crashed on my bed with an audiobook. As soon as the sun peaks through, the trees stop moving around, and the birds begin singing and chirping then I know it will soon be over. Be safe and be well. Chris

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I definitely know about the barometric pressure…. Those days are really tough!!! Had one to those days yesterday!!!!

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@dancermurphy

My name is Mary . Feb 8th I had neck surgery and 2 weeks later the neuropathy started all over my body I am on neurotin if I take to high a dose I don’t feel it but suffer with short term memory loss , balance and and have a hard time finding the the right words . I am so scared

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@dancermurphy Can you share what type of neck surgery you had? I am a spine surgery patient and had a fusion at C5/C6 and at about the 6 week mark post op, the pain did increase a bit because of scar tissue tightening. I was also in a neck brace for 3 months which makes neck muscles weaker, and I had to work through rehab after I stopped wearing the brace. Physical therapy helped a lot, but I had to wait until that 3 month mark to start until after fusion began because I don't have hardware in my spine and that was frustrating to not be able to stretch to help the pain. After it fused, I was able to rehab and made great progress. My physical therapist also does myofascial release which helps release tightness of scar tissue. I'll post a link to a discussion I started about MFR that has a lot of information. I had a spine fusion with only a bone graft. It might be worth a call to your surgical team to discuss your symptoms. Inflammation increases pain and your inflammation in your body will be higher because it's part of the healing process from the trauma of surgery. They may not be familiar with MFR work. There is a therapist finder link in the MFR discussion. It's worth discussing your prescription too and the side effects you are getting. If you are having spasms in your neck muscles, those can cause balance issues and dizziness if it is moving the upper cervical vertebrae around and affecting the normal curvature of the spine. I have had that happen to me.

Fear also increases pain a lot. As a patient, I learned how to confront my fears, and I was able to recover from my spine surgery without any pain medication. I was a patient who had feared pain all my life, but by working on those fears before my surgery, I was able to get past them, and embrace the surgical help I needed. I just accepted that it was going to hurt for awhile, but that real post surgical pain was not even close to the level of pain I had endured before the surgery because of an epidural spine injection that caused a paraesthesia pain because the volume of fluid that was injected and had no where to go. I was convulsing and starting to pass out after that injection, and I used slow deep breathing to keep calm and try to control the pain. I was able to stop myself from passing out and that was a victory because I took back control, and the pain wasn't causing me to loose consciousness. I just had to be patient and I had a few weeks that were awful with stabbing pains that got worse if I moved at all because of he injection. This injection was done as a diagnostic test before I came to Mayo as a patient, and no one at Mayo asked me to do this. These epidural injections are used to put off surgery, and some patients get temporary relief from them. They are not FDA approved for injection of a steroid into the spine, and they carry some big risks. I refused to do any further epidural injections. That surgeon didn't want to help me anyway, and I came to Mayo.

Now when I think about pain, I compare the experience to that day when the high end my pain scale was reset to that new level, and I realize that it's not as bad as it could be, and I relax. Pain is a normal pain of healing. Pain can also be caused by muscles and tissues that are too tight, and I can do something about that with my physical therapist. So I now think about it as a measure of my progress. I used to fear that the pain would never stop, but now I see it as a challenge that I can overcome. I used art and music to confront my fears and learned to relax in the midst of what I was going through. You can join the discussion on Art for Healing here.

My story
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Art for Healing
https://connect.mayoclinic.org/discussion/art-for-healing/

Myofascial Release
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@jenniferhunter

@dancermurphy Can you share what type of neck surgery you had? I am a spine surgery patient and had a fusion at C5/C6 and at about the 6 week mark post op, the pain did increase a bit because of scar tissue tightening. I was also in a neck brace for 3 months which makes neck muscles weaker, and I had to work through rehab after I stopped wearing the brace. Physical therapy helped a lot, but I had to wait until that 3 month mark to start until after fusion began because I don't have hardware in my spine and that was frustrating to not be able to stretch to help the pain. After it fused, I was able to rehab and made great progress. My physical therapist also does myofascial release which helps release tightness of scar tissue. I'll post a link to a discussion I started about MFR that has a lot of information. I had a spine fusion with only a bone graft. It might be worth a call to your surgical team to discuss your symptoms. Inflammation increases pain and your inflammation in your body will be higher because it's part of the healing process from the trauma of surgery. They may not be familiar with MFR work. There is a therapist finder link in the MFR discussion. It's worth discussing your prescription too and the side effects you are getting. If you are having spasms in your neck muscles, those can cause balance issues and dizziness if it is moving the upper cervical vertebrae around and affecting the normal curvature of the spine. I have had that happen to me.

Fear also increases pain a lot. As a patient, I learned how to confront my fears, and I was able to recover from my spine surgery without any pain medication. I was a patient who had feared pain all my life, but by working on those fears before my surgery, I was able to get past them, and embrace the surgical help I needed. I just accepted that it was going to hurt for awhile, but that real post surgical pain was not even close to the level of pain I had endured before the surgery because of an epidural spine injection that caused a paraesthesia pain because the volume of fluid that was injected and had no where to go. I was convulsing and starting to pass out after that injection, and I used slow deep breathing to keep calm and try to control the pain. I was able to stop myself from passing out and that was a victory because I took back control, and the pain wasn't causing me to loose consciousness. I just had to be patient and I had a few weeks that were awful with stabbing pains that got worse if I moved at all because of he injection. This injection was done as a diagnostic test before I came to Mayo as a patient, and no one at Mayo asked me to do this. These epidural injections are used to put off surgery, and some patients get temporary relief from them. They are not FDA approved for injection of a steroid into the spine, and they carry some big risks. I refused to do any further epidural injections. That surgeon didn't want to help me anyway, and I came to Mayo.

Now when I think about pain, I compare the experience to that day when the high end my pain scale was reset to that new level, and I realize that it's not as bad as it could be, and I relax. Pain is a normal pain of healing. Pain can also be caused by muscles and tissues that are too tight, and I can do something about that with my physical therapist. So I now think about it as a measure of my progress. I used to fear that the pain would never stop, but now I see it as a challenge that I can overcome. I used art and music to confront my fears and learned to relax in the midst of what I was going through. You can join the discussion on Art for Healing here.

My story
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Art for Healing
https://connect.mayoclinic.org/discussion/art-for-healing/

Myofascial Release
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@dancermurphy, @jenniferhunter
HI!
I am also a spine surgery patient.
My chronic pain actually began with cerival pain. Remarkably, after one shot, the pain was gone for years and years. It started up again about 2 years ago. My pain doctor tried many different things, but they did not help. I had pins and needles down my arm and violent headaches would wake me up.
In addition to the cervical issues, I also had lumbar issues with unrelenting pain. I saw 5 different pain docs. The last one I went to was able to help me. He procedures would give me anywhere from 1 month to 4 months of pain reduction. It was something I could live with. About 2 years ago, at the same time I had issues with the cervical spine, my pain doc was not longer able to help my lumbar.
After over a decade of suffering, I had enough. There were months, even a couple of years when I couldn't walk because of the pain. It was then I decide to confer with a neurosurgeon.
After looking at my test results, he suggested doing the cervical spine first. Instead of having a fusion, he replaced C5/6 with artificial disks. He went through the front of my neck. For me, after a couple of days, the surgical pain was gone. Within 2 weeks, my headaches were totally gone as was the pins and needles.
I healed very quickly and easily so I started PT at 6 weeks post-op (instead of 8 weeks).
Then came the lumbar. What a difference!!!!!!
I had what was called and X-Life fusion of L4/5. The recover was HORRIBLE and VERY PAINFUL for me!!!!! I was on pain meds longer than I had every been. Then suddenly, at 4 months, the pain was suddenly gone!!!
I still watch myself VERY carefully as if I just had the surgery. Too many people start to carry on the way they did before surgery and then the pain returns. They say the surgery was not successful, but I PERSONALLY THINK it is because they didn't take care long enough. Even though the scars and pain might be gone, it could take over a year for the cervical spine to completely heal and up to 2 years for the lumbar.
That being said, I don't lift anything heavier than a gallon, I don't bend without bending my knees, and don't reach and hyperextend, I still use the gripper I got after surgery, I don't turn my head or body quickly, etc., etc., etc.
So that's my story!

Ronnie (GRANDMAr)

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@grandmar

@dancermurphy, @jenniferhunter
HI!
I am also a spine surgery patient.
My chronic pain actually began with cerival pain. Remarkably, after one shot, the pain was gone for years and years. It started up again about 2 years ago. My pain doctor tried many different things, but they did not help. I had pins and needles down my arm and violent headaches would wake me up.
In addition to the cervical issues, I also had lumbar issues with unrelenting pain. I saw 5 different pain docs. The last one I went to was able to help me. He procedures would give me anywhere from 1 month to 4 months of pain reduction. It was something I could live with. About 2 years ago, at the same time I had issues with the cervical spine, my pain doc was not longer able to help my lumbar.
After over a decade of suffering, I had enough. There were months, even a couple of years when I couldn't walk because of the pain. It was then I decide to confer with a neurosurgeon.
After looking at my test results, he suggested doing the cervical spine first. Instead of having a fusion, he replaced C5/6 with artificial disks. He went through the front of my neck. For me, after a couple of days, the surgical pain was gone. Within 2 weeks, my headaches were totally gone as was the pins and needles.
I healed very quickly and easily so I started PT at 6 weeks post-op (instead of 8 weeks).
Then came the lumbar. What a difference!!!!!!
I had what was called and X-Life fusion of L4/5. The recover was HORRIBLE and VERY PAINFUL for me!!!!! I was on pain meds longer than I had every been. Then suddenly, at 4 months, the pain was suddenly gone!!!
I still watch myself VERY carefully as if I just had the surgery. Too many people start to carry on the way they did before surgery and then the pain returns. They say the surgery was not successful, but I PERSONALLY THINK it is because they didn't take care long enough. Even though the scars and pain might be gone, it could take over a year for the cervical spine to completely heal and up to 2 years for the lumbar.
That being said, I don't lift anything heavier than a gallon, I don't bend without bending my knees, and don't reach and hyperextend, I still use the gripper I got after surgery, I don't turn my head or body quickly, etc., etc., etc.
So that's my story!

Ronnie (GRANDMAr)

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@grandmar From what I have heard, recovery after cervical disc replacement is easier than fusion. My presurgical pains were gone immediately too after my fusion surgery and most of the surgery pain was gone by 6 weeks. 3 months later, I stopped noticing that I had had surgery. I heard about the lumbar surgeries being more difficult and painful, and it makes sense since that is bearing all your body weight and forces if you twist can pull on the hardware. I have a bulging lumbar disc and I am trying to maintain my core strength to protect my lumbar spine and hopefully avoid a lumbar problem. I do know that riding my horse does wonders for that, and I make sure I ride with good posture. I can get some low back pain, and riding helps it. It also helps by strengthening my mid back which helps posture and that is important for me because I also have TOS (thoracic outlet syndrome) and any slouching or forward head posture will just aggravate that. Swimming also helps and I like to kick laps with a kick board and I should be doing more. I appreciate hearing your story. I'm careful too and don't want to do activities that stress my neck. I do have some issues with long distance driving and get spasms from my shoulder into my neck because of the TOS after it starts to fatigue. I don't have as much arm strength either, so I am careful about lifting. I am past 2 years post op now, and still rebuilding muscle that was lost. It is a long recovery.

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@jenniferhunter

@dancermurphy Can you share what type of neck surgery you had? I am a spine surgery patient and had a fusion at C5/C6 and at about the 6 week mark post op, the pain did increase a bit because of scar tissue tightening. I was also in a neck brace for 3 months which makes neck muscles weaker, and I had to work through rehab after I stopped wearing the brace. Physical therapy helped a lot, but I had to wait until that 3 month mark to start until after fusion began because I don't have hardware in my spine and that was frustrating to not be able to stretch to help the pain. After it fused, I was able to rehab and made great progress. My physical therapist also does myofascial release which helps release tightness of scar tissue. I'll post a link to a discussion I started about MFR that has a lot of information. I had a spine fusion with only a bone graft. It might be worth a call to your surgical team to discuss your symptoms. Inflammation increases pain and your inflammation in your body will be higher because it's part of the healing process from the trauma of surgery. They may not be familiar with MFR work. There is a therapist finder link in the MFR discussion. It's worth discussing your prescription too and the side effects you are getting. If you are having spasms in your neck muscles, those can cause balance issues and dizziness if it is moving the upper cervical vertebrae around and affecting the normal curvature of the spine. I have had that happen to me.

Fear also increases pain a lot. As a patient, I learned how to confront my fears, and I was able to recover from my spine surgery without any pain medication. I was a patient who had feared pain all my life, but by working on those fears before my surgery, I was able to get past them, and embrace the surgical help I needed. I just accepted that it was going to hurt for awhile, but that real post surgical pain was not even close to the level of pain I had endured before the surgery because of an epidural spine injection that caused a paraesthesia pain because the volume of fluid that was injected and had no where to go. I was convulsing and starting to pass out after that injection, and I used slow deep breathing to keep calm and try to control the pain. I was able to stop myself from passing out and that was a victory because I took back control, and the pain wasn't causing me to loose consciousness. I just had to be patient and I had a few weeks that were awful with stabbing pains that got worse if I moved at all because of he injection. This injection was done as a diagnostic test before I came to Mayo as a patient, and no one at Mayo asked me to do this. These epidural injections are used to put off surgery, and some patients get temporary relief from them. They are not FDA approved for injection of a steroid into the spine, and they carry some big risks. I refused to do any further epidural injections. That surgeon didn't want to help me anyway, and I came to Mayo.

Now when I think about pain, I compare the experience to that day when the high end my pain scale was reset to that new level, and I realize that it's not as bad as it could be, and I relax. Pain is a normal pain of healing. Pain can also be caused by muscles and tissues that are too tight, and I can do something about that with my physical therapist. So I now think about it as a measure of my progress. I used to fear that the pain would never stop, but now I see it as a challenge that I can overcome. I used art and music to confront my fears and learned to relax in the midst of what I was going through. You can join the discussion on Art for Healing here.

My story
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Art for Healing
https://connect.mayoclinic.org/discussion/art-for-healing/

Myofascial Release
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Thank you so much ! I will check into that . I added Reiki once a week and it super relaxes me . I just got back from a trip to LA where I had to work long hours but can rest now I see a neurosurgeon this week and had all new MRI they wanted to give me a steroid shot and I said no . I have had a few Pilate’s lessons but only do legs . I am a C5-C6 artificial mobi c disc replacement .

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We don’t have thunderstorm’s in San Diego but I hope you don’t get to many where you live !!

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@artscaping

@dancermurphy Goid morning. It might help to tell you that I also experienced those symptoms after starting neurontin. My neurologist modified the time and dosage. The symptoms of grasping for words, feeling fuzzy, and unbalanced, stopped as my body adjusted to the medication and dosage time. Maybe time and an adjustment will help soothe your fears. Be safe and protected today. Chris

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Thank you so much !!

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@dancermurphy

We don’t have thunderstorm’s in San Diego but I hope you don’t get to many where you live !!

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@dancermurphy, Just wanted to let you know that there is an expert level Myofascial Release (MFR) Therapist in San Diego on Santo Road. A session might be helpful and also help you with your fears. You will learn a lot about how your neuropathy can be managed. If you want the address I can give it to you or you can just look on the map for Adjust Physical Therapy. Good luck with your test results.

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@dancermurphy

Thank you so much ! I will check into that . I added Reiki once a week and it super relaxes me . I just got back from a trip to LA where I had to work long hours but can rest now I see a neurosurgeon this week and had all new MRI they wanted to give me a steroid shot and I said no . I have had a few Pilate’s lessons but only do legs . I am a C5-C6 artificial mobi c disc replacement .

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@dancermurphy Good for you for standing your ground about a spine steroid shot. I know some patients benefit from them, but if they are injected in the wrong place, they can cause serious problems. I won't do them again either after having had a bad experience with it. A lot of doctors push the injections. I as a patient would much rather fix a spine problem and recover from it. I only had 5 days of pain relief from my epidural before the pains started returning and I mapped them on a diagram as they did. I had spinal cord compression which is something that should be fixed sooner rather than later in order to avoid permanent injury to the spinal cord.

I do some pilates in physical therapy on a reformer and that has helped a lot rebuilding muscle in my arms and shoulders that was lost to atrophy from spinal cord compression. My physical therapist just measured my biceps last week and I gained an inch and a quarter in both arms. Are you having more problems since your disc replacement? We both had same level surgeries, so I'm curious what that is like to have an artificial disc. I wasn't a good candidate for it because of a bit of instability.

Anything you can do to relax is a benefit to heath. That might be different for each of us, and it;s interesting to hear about what others do. Thanks for sharing your experience.

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@artscaping

@dancermurphy, Just wanted to let you know that there is an expert level Myofascial Release (MFR) Therapist in San Diego on Santo Road. A session might be helpful and also help you with your fears. You will learn a lot about how your neuropathy can be managed. If you want the address I can give it to you or you can just look on the map for Adjust Physical Therapy. Good luck with your test results.

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@artscaping @dancermurphy Great suggestion! Yes, myofascial release can and does address the body's memory in the fascia, and if it was an injury that caused the problems, sometimes patients cry during treatment. It's not due to pain, but to the emotions that can be released when these areas are reawakened. I know for me, my emotions about my spine injury that happened 20 years ago in a car accident were connected to emotional trauma I experienced as a young child. I explored a lot of that and learned how to deprogram it in the 2 years that I was looking for and not finding a surgeon willing to help me. The physical aspect of MFR is that it gets the fascia moving again, and brings circulation and fluids that help oxygenate and re-hydrate the tissues, and facilitates removal of waste products that have been trapped there. MFR work isn't painful. Sometimes a therapist has to use some more aggressive work that can be painful on muscles.

I could also recommend a couple of Mayo books about learning to be resilient and reduce stress. I bought both of them, and they will help you examine how you think about things, and how that might be creating stress. I found them very interesting. The Guide to Stress Free Living is more in depth, and the handbook for Happiness is like a workbook with exercises to think about.
https://marketplace.mayoclinic.com/shop/healthy-lifestyle/book/mayo-clinic-stress-management-combo_752700

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@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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I tried to 'unsubscribe'. I can't keep up with all the emails.

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@artscaping

@dancermurphy, Just wanted to let you know that there is an expert level Myofascial Release (MFR) Therapist in San Diego on Santo Road. A session might be helpful and also help you with your fears. You will learn a lot about how your neuropathy can be managed. If you want the address I can give it to you or you can just look on the map for Adjust Physical Therapy. Good luck with your test results.

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@artscaping @dancermurphy, I also live in San Diego and would be interested in the MFR therapist in dealing with neuropathy affecting my feet. Thank you so much for posting! Laura

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@lauraj155, @dancermurphy I am happy to give you the information. Brian McDonald, Adjust Physical Therapy, 858 715-3878. He is at the expert level for myofascial release therapy (MFR). It's a feel-good place.

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@artscaping

@lauraj155, @dancermurphy I am happy to give you the information. Brian McDonald, Adjust Physical Therapy, 858 715-3878. He is at the expert level for myofascial release therapy (MFR). It's a feel-good place.

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@artscaping, Thank you!! -Laura

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