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?

@blocker

I am 44 years old and was diagnosed with peripheral neuropathy almost a year and a half ago. This has been a really rough 17 months. There is, so far, no underlying reason that has been determined. I take Gabapentin for pain, Trazodone to help me sleep and recently started Ropinirole for muscle spasms. I began to struggle to walk a few months ago and that has gotten progressively (and rapidly) worse.
I've seen diabetic neuropathy studies and treatments but peripheral neuropathy treatment and outcomes seem, so far, depressing and almost nonexistent.
Gabapentin causes me serious memory issues, and the neuropathy and Gabapentin cause me balance issues, exacerbating my struggles to walk and it's difficult not knowing when I'll suffer a flare so the not knowing makes life difficult to plan for with school aged children.
I often find myself feeling defeated and depressed to think that I will have to live the rest of my life in chronic and unpredictable pain.
Any words of wisdom or advice for someone quite new to this life would be greatly appreciated.

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@blocker, Good afternoon. I can feel and have great empathy for your journey. I am walking right beside you with idiopathic small fiber neuropathy (SFN). My situation is a bit complicated with chronic myofascial pain syndrome (CMPS). Over time, the zaps and electrical shocks continued to wake me up about 5:30 a.m. just so I could have a day of attempts to control pain and numbness in my extremities.

I can sense that you are distressed about the symptoms and also the impact from the very young onset at age 44. I can also just imagine how concerned you are about stopping the PN process before it continues to manifest itself with more aggravating and limiting symptoms.

First, may I suggest…..take your gabapentin in the evening before bedtime (with your medical provider's approval) to have a more restful and uninterrupted sleep.
Second….Discuss your expected outcomes and results with your medical provider and then give him/ her factual and inclusive results about your experience.
Third…..expand your approach to be more integrative with a focus on mind-body connections. For the body, the best solution I have found has been myofascial massage on a weekly basis. Here is the link to the discussion on Connect :

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

It might be helpful to hear from @jenniferhunter when she has a chance to review your story.

It seems like this is enough for right now. Just know that I understand, and in fact, we at Connect all understand pain, disappointment, and struggle. Today, many of the mentors as well as me, are living a pretty enjoyable life in spite of the existence of a condition for which there is no known cure and only partial containment. Please let us know how your days are going. Chris

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@tigreyes2004

Thank you. Cymbalta & gabapen 1200 mg seems a lot to take. Don't you feel tired all the time? That is the reason I got off the Gabapentin but everyone is different. I'm glad it works for you.

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@tigreyes2004 That is a very good question. Actually, the maximum dose for Gabapentin is 3600 mg. Remember that I take the 1200 mg of Gabapentin at night as I want it to help me sleep. In fact, that was one of the main reasons for moving it to the evening. Also, taking it in the morning was "zombie" time.

Now, as I recall, my Neurologist said that the effects of the gabapentin taken at night will continue to work until mid-morning or mid-day. And that is without side effects. I try to stay busy and not to nap during the day. That is something that we older folks can get caught up in….napping in the day and then not sleeping at night. Thanks for your reply. Chris

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@tigreyes2004

Thank you. I hope it works bc I'm afraid to try other stuff like the Lyrica. I have heard a lot of bad things about that one.A lot of people said they ended up in the hospital.

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I totally agree with you. I was apprehensive as well. I think the hope with any medication is that the good out weighs the bad and we receive the most benefit for our problem. I have looked at It like choosing my battles and what works best for me. It can be a scary and viscous cycle, one I'm sure we'd all prefer not to be in. As Chris mentions, we are all unique and what works for one may not work for another. As John mentions, the importance of research and education is key.

I do have side effects with Norco. I take magnesium to help with constipation. I also do notice between Cymbalta and/or Lyrica I stumble for a word or a name. I don't like that a bit but the relief I receive is worth it to me.

One last thought…
while gaining clarity and knowledge of my multiple diagnosis, the first goal was to find a level of pain relief so I was more apt to comprehend, settle and come to some sort of acceptance in my life. It's a daily struggle and never easy but I think once that happens, then maybe it's easier to see a larger picture and make decisions on whether you don't want to stay on a certain drug or maybe experiment with a new drug or supplement path with a more holistic approach. In the end its up to each individual. I wish you the best and thank you for the opportunity be cause helping you, helps me.

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@johnbishop

Hi @blocker, Welcome to Connect. I'm sorry for your pain. Neuropathy can be a rough journey. I'm hoping the joining the discussion here on Connect and learning as much as you can about your condition will help you find some answers that will help your pain and give you some relief. I have idiopathic small fiber peripheral neuropathy but I only have the numbness with my PN. I've posted my story and what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I do think some forms of mild exercise may help with the balance issues. The Foundation for Peripheral Neuropathy has some information that may be helpful on their site here:
https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/

Is your peripheral neuropathy mostly in your feet and/or legs? @artscaping and other members may be able to share what helps them also.

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Yes, so far its just my legs and feet. Because of the balance issues I struggle to be very active but I recently started a diet and have lost 14 pounds in the hopes that by carrying a bit less weight I can be more active. Thanks for the information, I will definitely check it out!

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@artscaping

@blocker, Good afternoon. I can feel and have great empathy for your journey. I am walking right beside you with idiopathic small fiber neuropathy (SFN). My situation is a bit complicated with chronic myofascial pain syndrome (CMPS). Over time, the zaps and electrical shocks continued to wake me up about 5:30 a.m. just so I could have a day of attempts to control pain and numbness in my extremities.

I can sense that you are distressed about the symptoms and also the impact from the very young onset at age 44. I can also just imagine how concerned you are about stopping the PN process before it continues to manifest itself with more aggravating and limiting symptoms.

First, may I suggest…..take your gabapentin in the evening before bedtime (with your medical provider's approval) to have a more restful and uninterrupted sleep.
Second….Discuss your expected outcomes and results with your medical provider and then give him/ her factual and inclusive results about your experience.
Third…..expand your approach to be more integrative with a focus on mind-body connections. For the body, the best solution I have found has been myofascial massage on a weekly basis. Here is the link to the discussion on Connect :

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

It might be helpful to hear from @jenniferhunter when she has a chance to review your story.

It seems like this is enough for right now. Just know that I understand, and in fact, we at Connect all understand pain, disappointment, and struggle. Today, many of the mentors as well as me, are living a pretty enjoyable life in spite of the existence of a condition for which there is no known cure and only partial containment. Please let us know how your days are going. Chris

Jump to this post

Chris, thank you so much for your encouraging words, they mean more than you could know. I am the only person I know who has idiopathic neuropathy, I have 2 friends with diabetic neuropathy but not having someone to talk to who understands what I am dealing with can feel lonely. I have an amazing husband who is incredibly supportive and the most caring, thoughtful teen age boys who do everything they can to help me.
I actually take 600mg Gabapentin 2 times a day and 900mg at bed time. It does help but the night time pain sometimes seems unbearable. When I wake it's a rare occasion that I can get back to sleep; I've developed an intimate relationship with coffee. 😉
I'm open to any suggestions and am grateful to have support and understanding from those who truly understand.

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@blocker

I am 44 years old and was diagnosed with peripheral neuropathy almost a year and a half ago. This has been a really rough 17 months. There is, so far, no underlying reason that has been determined. I take Gabapentin for pain, Trazodone to help me sleep and recently started Ropinirole for muscle spasms. I began to struggle to walk a few months ago and that has gotten progressively (and rapidly) worse.
I've seen diabetic neuropathy studies and treatments but peripheral neuropathy treatment and outcomes seem, so far, depressing and almost nonexistent.
Gabapentin causes me serious memory issues, and the neuropathy and Gabapentin cause me balance issues, exacerbating my struggles to walk and it's difficult not knowing when I'll suffer a flare so the not knowing makes life difficult to plan for with school aged children.
I often find myself feeling defeated and depressed to think that I will have to live the rest of my life in chronic and unpredictable pain.
Any words of wisdom or advice for someone quite new to this life would be greatly appreciated.

Jump to this post

@blocker Welcome. You are among friends here. Can you tell me a bit more about your muscle spasms? Where and when do they happen? Is there something that is a trigger? What position is your body in when the spasms are happening? The reason I am asking this is because there can be different reasons for muscle spasms. It could be a deficiency of magnesium. It could be a physical issue of nerve compression somewhere. Do the spasms happen in different places or are they always in the same place? What medications or supplements are you taking? Do you know the side effects of the supplements and prescriptions? Have your doctors tested for markers of inflammation? Do you have thyroid disease or autoimmune disease? Have you suffered an experience that might cause PTSD (post traumatic stress disorder)? Have you had an injury or fall? Do you have balance issues if you are not taking Gabapentin? What do you think is the reason that you have difficulty walking? Have you always had trouble walking or is this a new issue? What kind of shoes do you wear? Do you have vision or hearing problems? I'm asking that because those can be related to balance. Have you been bitten by a tick or insect that could cause a blood born infectious disease? Do you suspect food allergies? Do you have neck or back pain? What happens when you get a flare? Do you have fevers or headaches? Do you drink enough water? Why are you fearful that your life won't get better and that you will live in pain? Did someone tell you something that made you believe that?

So now that I've asked a bunch of questions, I'll tell you that many times in my life my doctors have not known what was wrong with me, and I put on my creative thinking cap and started asking questions about why things are the way they are, and what was in my capability to change. Doctors make mistakes, and they don't know the cause of your symptoms. If you just follow their advice and take drugs to mask pain, you won't actively be looking for a solution to the problem. Any of the things I've mentioned could be something that someone missed or misunderstood that could change the direction of the path you are on. I might add that you don't have clear directions as to what path would be correct, and what changes may be able to benefit you. I asked these things to get you to think about them which might lead to questions you could ask about your health that could change the direction of your path.

You need to understand your pain and try to learn from it. That's a big lesson that I had in my life, and I had always feared pain. For me it was something I had to endure until it was over and as a child, I had no choices, and I learned to fear pain which made it a lot worse. Stress will increase pain a lot. I had a whiplash 20 years ago and have lived in some pain ever since, and had a bulging disc. One day I was stretching my neck and turned my head and heard an audible pop and my head turned further and I felt a strange queasy sensation. I knew what had happened. That bulging disc in my neck ruptured spilling out it's jelly like middle into my spinal canal. Months later, I noticed that when I turned my head, it felt like a dog was biting my ankle, and it stopped if I looked forward again. What I was feeling were bone spurs that grew next to the ruptured disc that would contact my spinal cord when I turned my head. No doctor believed me when I said I could turn pain on and off by turning my head, and over the next 2 years, I just got worse while a series of 5 different surgeons giving their expert opinions didn't think they could help me… seemingly, I had a problem that was too complex to take a risk on that could impact their statistics of surgical success rates and job performance. No doctor wants to fail or get it wrong, and it's much easier to try to treat symptoms instead of understand the reasons behind them. The thing they wanted to do was to put off making a decision and wanted me to have spinal injections for pain. I had only one as a diagnostic test to see if it would take away the pain I had, and it did… all of it…. everywhere in my body, but again the surgeon didn't listen because he didn't understand why I had those results, and why the leg and ankle pain I had stopped temporarily. I developed more pain all over my body, muscle spasms, jumping leg muscles, and I was gaining the ability to cause stabbing pains and shocks to my body with my neck position, and I got dizzy. One day I looked up at birds flying overhead and instantly had vertigo with the whole world spinning around me and it didn't stop when I leveled my head and I fell over. Even though my hand was on the porch railing, there was nothing I could do to stop myself from falling backward. I thought that telling this to surgeon #5 would convince him to help me and let him know that my situation was becoming urgent. It had the opposite effect. Instead, I was told that he would not offer surgical help to me because he thought that it wouldn't fix the major problems I had and didn't want to put me through it. He suggested a differential diagnosis of an inflammatory problem like MS. I felt so betrayed. I had done every test he asked of me during the last 5 months even the spine injection that scared me. I had worked so hard to get past my fears of facing spine surgery, and I was left defeated, but I also realized that I should not have feared him. If he wouldn't look for answers, I would do that myself, and I read all the research I could find about cervical spine surgery, and I looked for another surgeon. I would read the papers on surgeons I considered so I could see the direction of their practice and surgical methods as well as their research.

I thought about Mayo and looked for a surgeon with an interest in the problems I had. I was reading his paper and looked up some terminology and it hit upon other medical literature describing a case of cervical stenosis with symptoms similar to mine. I had an answer and I knew it was right, but I couldn't convince any of the doctors who knew me at the institution where surgeon #5 practiced to help me bring this new discovery to his attention, and I knew he wasn't going to listen to me. He already told me that my leg pain was not related to the spinal cord compression in my neck, and that was misinformation. I had listened to my symptoms and tracked them over time by diagramming my pain on a drawing. What I realized is that I had the life skills to explore and ask questions that could lead me to a path of recovery even though I had a deep fear of major surgery that was going to hurt, and for a long time, and that I should fire a doctor who isn't working for my benefit.

So I did come to Mayo, and experienced truly great medical care. I worked out ways to emotionally confront and defeat my fears, and I could not have done that if I didn't understand where they came from. I used my creativity as problem solving to figure out my medical dilemma. My previous doctors had fears too, but it wasn't about me, it was about themselves and they put their needs first. When I came to Mayo, my medical needs were given priority, and I was able to choose my destiny. I would have become disabled if no one was willing to help me, and my future was dependent on another person willing to take a chance on me. I was loosing what I loved the most about my life in that I was unable to hold my arms up or control their motion, and I was in a lot of pain and could send an electric bolt down my body if I bent my neck forward. I stopped painting because as an artist, I didn't want to produce inferior work. That was difficult and depressing because I had worked for years to develop my talent, and I didn't know if I would be able to get back what had already been lost, but for myself, I had to try, so making a decision to go forward with spine surgery was my only real choice. I was lucky that I had that choice because a lot of people don't get to choose ability over disability.

So then, leave no stone un-turned. Don't accept a diagnosis without an explanation because you deserve better than that. Doctors make mistakes and medicine is always evolving with new knowledge. Someone somewhere is likely researching to find answers, and until then patients have to keep asking questions and looking for answers. I have an advantage in that I understand a lot of medical issues because I have a biology degree, and learned a lot about anatomy in science and art school, and I have learned a lot from my physical therapist, and as an advocate for my elderly parents and their issues. I hope that I've given you some hope, and at the very least just to feel that you are not alone. Patients really do have some control over their pain and problems. Right after my spine surgery, I was able to ditch the pain meds completely and I had a great recovery. The post surgical pain was tolerable and not as bad as I predicted. Our mind has the power to exaggerate and fixate on pain and let fear take control of our lives. On the other hand, we can make other choices and take some of that power back. Let me know more about your situation, and I'll do my best to help. I've done a lot of troubleshooting and have improved my life. Food allergies have caused a lot of pain for me, and I'm careful what I eat.

You may want to look at the Connect discussion about myofascial release which can help neuropathy for some people. It has helped me a lot before and after my surgery.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You may want to consider a functional or environmental medicine doctor. They look for causes and prevention on problems in the body's biochemistry instead of masking symptoms with drugs.
There is a provider finder link for them at https://www.aaemonline.org/find.php

If you wanted to know more about my story, here is the link. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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@blocker

Chris, thank you so much for your encouraging words, they mean more than you could know. I am the only person I know who has idiopathic neuropathy, I have 2 friends with diabetic neuropathy but not having someone to talk to who understands what I am dealing with can feel lonely. I have an amazing husband who is incredibly supportive and the most caring, thoughtful teen age boys who do everything they can to help me.
I actually take 600mg Gabapentin 2 times a day and 900mg at bed time. It does help but the night time pain sometimes seems unbearable. When I wake it's a rare occasion that I can get back to sleep; I've developed an intimate relationship with coffee. 😉
I'm open to any suggestions and am grateful to have support and understanding from those who truly understand.

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I don’t know.much about it, but have you considered a peripheral nerve stimulator ?

Liked by Leonard

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Has anyone in the group had experience with a simulator? I’ve tried a lot of different devices and drugs and nothing seems to work well (or in the case of drugs the side effects have been so bad I had to stop using them).

Liked by Leonard

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@jackkdh

Has anyone in the group had experience with a simulator? I’ve tried a lot of different devices and drugs and nothing seems to work well (or in the case of drugs the side effects have been so bad I had to stop using them).

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Hi @jackkdh — There is another discusswion you can read through to see what people have written about different nerve stimulators, https://connect.mayoclinic.org/discussion/has-anybody-had-an-implantable-neurostimulator-for-chronic-pain/.

Liked by Leonard

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My thanks John

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Thank you for allowing me to join

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I am hoping somebody can advise me on where i can find neuropathy slippers.

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@marilynjs

I am hoping somebody can advise me on where i can find neuropathy slippers.

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Hi @marilynjs — Welcome to Connect. There is another discussion here on Connect that you might want to view and learn what others have found for shoes/slippers that they like and feel comfortable with their neuropathy.

> Groups > Neuropathy > If the shoe fits…right?
https://connect.mayoclinic.org/discussion/if-the-shoe-fits-right/

Are you able to share a little more about your diagnosis or any slippers you like now?

Liked by Leonard

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@johnbishop

@lynnaustin here are the two links – one to the closed Facebook group which should let you join the group but you might get asked a few questions. This is the Facebook Group I found – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://www.facebook.com/groups/spnpd – they have a website with links to order the protocol supplements: http://solutions2pnpd.com/. When you join they have a wealth of research information in their Files section. I don't have the pain that most members had with their PN. I feel the supplements have slowed or possibly stopped the progression of the PN in my legs. I still have the numbness but I do have some days better than others and it has not gotten worse as my neurologist said it would 3 years ago.

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Hi John . I’ve tries to navigate The Protocol website but haven’t been to successful. I’m wondering if you and others experience negative side effects to the supplements? I’m petite and wondering how dosages can be the same for everyone.

Liked by Leonard

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@lynnaustin

Hi John . I’ve tries to navigate The Protocol website but haven’t been to successful. I’m wondering if you and others experience negative side effects to the supplements? I’m petite and wondering how dosages can be the same for everyone.

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Hi Lynn @lynnaustin, some people have had trouble ramping up to the full dose of R-ALA. It has to be done slowly as in the instructions on the site for the supplement. The dosages have nothing to do with body size (IMHO). It's more about theuropeutic dosages for the different supplement.

Are you having difficulty navigating the website or the Facebook group. It might be hard to navigate the Facebook group and locate the Files section on a Mobile device. I've always used a computer to do that. The only supplement that I first had an issue with was the 1.5 oz of hemp oil every morning. Not a physical thing, it just made me gag trying to swallow it. I've gotten used to it now and can just swig it down. I've never had issues with the website because I only use the Products page – http://solutions2pnpd.com/products/ and the Instructions page – http://solutions2pnpd.com/instructions/. There's not much else on the website. All of the vital information and posts are in the Facebook group which admittedly is much easier on a computer – http://www.facebook.com/groups/spnpd

Liked by Leonard

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