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?

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

Thank U for the reponse. I have come across insomnia, depression, anxiety etc. All these have been gifted by my profession. No proper sleep. Tension, anxiety has ruined my health. Thyroid test is ok. Now I m taking sertaline 50 mg. Clonazepam I stopped a month ago and the withdrawl syptoms jolted my body. If one disease is cured another problem arises. Now fatigue is a problem. How long i can take coenzyme tablets? Disturbed sleep, freshlessness even after good sleep etc. r also spoiling me. I was very busy in my work till last year with 12 hours work without break but i am afraid of even an ordinary work in office. Fell down from the twowheeler, kicking in an object etc. r also the other problems. How can v overcome all these problems? God only knows. Thank U all.

REPLY
@johnbishop

Hi @venki welcome back to the group. I wished I had some answers for you and hopefully someone can offer some suggestions. You are much younger than I and you have a lot going on. I'm guessing you've already discussed your thoughts and questions as to what's going on with your doctors. You might want to read through the following discussion on Connect which seems like it could be a possibility for some of your symptoms:

Groups > Just Want to Talk > Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
-- https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

I recently found out I had obstructive sleep apnea which does cause fatigue. A lot of people have this condition and are not aware of it. You might want to ask your doctor about it and get tested.

Obstructive Sleep Apnea - Symptoms & Causes
-- https://www.mayoclinic.org/diseases-conditions/obstructive-sleep-apnea/symptoms-causes/syc-20352090

@venki have you decided against surgery for the varicose veins?

John

Jump to this post

Thanks for the response. I am having sleep apnea and I have taken clonazepam. Last month I stopped taking that. Probably this should be the reason for fatigue. I am wearing compression stockings which helps me to some extent. Is surgery advisible?

REPLY
@venki

Thanks for the response. I am having sleep apnea and I have taken clonazepam. Last month I stopped taking that. Probably this should be the reason for fatigue. I am wearing compression stockings which helps me to some extent. Is surgery advisible?

Jump to this post

@venki, I don't think any member can advise you whether or not you should have surgery since most members are not medical professionals or doctors, including myself. This is something that you need to discuss with your doctors. I agree with @jenniferhunter that a second opinion might be worthwhile. I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

John

REPLY
@venki

Thank U for the reponse. I have come across insomnia, depression, anxiety etc. All these have been gifted by my profession. No proper sleep. Tension, anxiety has ruined my health. Thyroid test is ok. Now I m taking sertaline 50 mg. Clonazepam I stopped a month ago and the withdrawl syptoms jolted my body. If one disease is cured another problem arises. Now fatigue is a problem. How long i can take coenzyme tablets? Disturbed sleep, freshlessness even after good sleep etc. r also spoiling me. I was very busy in my work till last year with 12 hours work without break but i am afraid of even an ordinary work in office. Fell down from the twowheeler, kicking in an object etc. r also the other problems. How can v overcome all these problems? God only knows. Thank U all.

Jump to this post

@venki Something I can suggest is a pair of books written by a Mayo doctor with a mind/body practice. I purchased both of them and they are excellent in explaining how to achieve resilience and reduce stress and anxiety. I had considerable anxiety about having spine surgery before I came to Mayo that was started by a comment by one of the surgeons who saw me previously. I had always had fear since childhood about medical procedures and I decided to use all my life skills and creativity to defeat the fear and I succeeded. I'm an artist and I was using my art and music with deep breathing and I taught myself how to lower my blood pressure. I would start the day thinking about surgery and I felt like I was going to get hit by a train and I couldn't get off railroad tracks. I did lots of other things too, and talked to a counselor to make sure I was on the right track. I had a few years working through this and by the time I came to Mayo, I was relaxed and ready with my mind and body for the help I needed. I got the books a year after my surgery at a follow up, and the books explained why my methods had worked to deprogram the anxiety.

You do need good sleep for good health. Sleep apnea is going to interfere and a friend of mine who has sleep apnea told me it is a source of anxiety because her body is in fight or flight mode all night because of not getting enough oxygen. You should still follow up with a doctor about that. You don't want to assume that sleep apnea is the only reason for your fatigue. There are overlapping symptoms for many different conditions, and even though you and I might think we know why, it's very easy to make a mistake. I did that myself and missed a problem with an infection from a tooth with an old root canal because I thought it was sinus problems which I commonly have with my allergies. When I recognized the real problem, the infection had spread in my jawbone and I had oral surgery to clear the infection and a bone graft to replace the bone that had been destroyed.

I agree with @johnbishop that another opinion would benefit you and if you can do that at Mayo, that is what I would recommend. I was amazed by the comprehensive evaluation they gave me and they checked everything that was an issue for me at the time of my surgical evaluation. I have never experienced that degree of expertise and efficiency anywhere else and they didn't waste time. They did more in 2 days than any of the 5 surgeons I saw in the 3 years previously, and my Mayo surgeon got it right. The others had missed the diagnosis and would not help me. In my case, surgery was necessary because of spinal cord compression that would have disabled me.

If you have not seen the recent documentary about Mayo and why it is so successful in treating patients, you can see it online for the next week on the PBS website. They cover the history of Mayo and also several patient stories about their treatments. Here is the link:
https://www.pbs.org/video/the-mayo-clinic-faith-hope-science-czhdtb/
I'm not really sure from your description if you have an injury from a fall or physical problems affecting your work. I know that sometimes problems seem overwhelming, but every journey begins with a single step. You need to advocate for yourself and ask questions of your medical providers about what is best for your treatment. I always try to prevent a medical problem rather than treat the symptoms later. I do see an evironmental medicine doctor or functional medicine doctor outside of Mayo (because I don't live near Mayo).

Here are the books I suggested and they are used in teaching programs at Mayo . The Guide to Stress Free Living is more indepth, and the Handbook for Happiness is like a work book. I bought them and recommend both.
https://marketplace.mayoclinic.com/shop/healthy-lifestyle/book/mayo-clinic-stress-management-combo_752700

REPLY
@jenniferhunter

@venki Something I can suggest is a pair of books written by a Mayo doctor with a mind/body practice. I purchased both of them and they are excellent in explaining how to achieve resilience and reduce stress and anxiety. I had considerable anxiety about having spine surgery before I came to Mayo that was started by a comment by one of the surgeons who saw me previously. I had always had fear since childhood about medical procedures and I decided to use all my life skills and creativity to defeat the fear and I succeeded. I'm an artist and I was using my art and music with deep breathing and I taught myself how to lower my blood pressure. I would start the day thinking about surgery and I felt like I was going to get hit by a train and I couldn't get off railroad tracks. I did lots of other things too, and talked to a counselor to make sure I was on the right track. I had a few years working through this and by the time I came to Mayo, I was relaxed and ready with my mind and body for the help I needed. I got the books a year after my surgery at a follow up, and the books explained why my methods had worked to deprogram the anxiety.

You do need good sleep for good health. Sleep apnea is going to interfere and a friend of mine who has sleep apnea told me it is a source of anxiety because her body is in fight or flight mode all night because of not getting enough oxygen. You should still follow up with a doctor about that. You don't want to assume that sleep apnea is the only reason for your fatigue. There are overlapping symptoms for many different conditions, and even though you and I might think we know why, it's very easy to make a mistake. I did that myself and missed a problem with an infection from a tooth with an old root canal because I thought it was sinus problems which I commonly have with my allergies. When I recognized the real problem, the infection had spread in my jawbone and I had oral surgery to clear the infection and a bone graft to replace the bone that had been destroyed.

I agree with @johnbishop that another opinion would benefit you and if you can do that at Mayo, that is what I would recommend. I was amazed by the comprehensive evaluation they gave me and they checked everything that was an issue for me at the time of my surgical evaluation. I have never experienced that degree of expertise and efficiency anywhere else and they didn't waste time. They did more in 2 days than any of the 5 surgeons I saw in the 3 years previously, and my Mayo surgeon got it right. The others had missed the diagnosis and would not help me. In my case, surgery was necessary because of spinal cord compression that would have disabled me.

If you have not seen the recent documentary about Mayo and why it is so successful in treating patients, you can see it online for the next week on the PBS website. They cover the history of Mayo and also several patient stories about their treatments. Here is the link:
https://www.pbs.org/video/the-mayo-clinic-faith-hope-science-czhdtb/
I'm not really sure from your description if you have an injury from a fall or physical problems affecting your work. I know that sometimes problems seem overwhelming, but every journey begins with a single step. You need to advocate for yourself and ask questions of your medical providers about what is best for your treatment. I always try to prevent a medical problem rather than treat the symptoms later. I do see an evironmental medicine doctor or functional medicine doctor outside of Mayo (because I don't live near Mayo).

Here are the books I suggested and they are used in teaching programs at Mayo . The Guide to Stress Free Living is more indepth, and the Handbook for Happiness is like a work book. I bought them and recommend both.
https://marketplace.mayoclinic.com/shop/healthy-lifestyle/book/mayo-clinic-stress-management-combo_752700

Jump to this post

I would just like to add that Dr. Amit Sood has a lot of great short videos on his website also.
https://www.resilientoption.com/

REPLY
@jenniferhunter

@venki Something I can suggest is a pair of books written by a Mayo doctor with a mind/body practice. I purchased both of them and they are excellent in explaining how to achieve resilience and reduce stress and anxiety. I had considerable anxiety about having spine surgery before I came to Mayo that was started by a comment by one of the surgeons who saw me previously. I had always had fear since childhood about medical procedures and I decided to use all my life skills and creativity to defeat the fear and I succeeded. I'm an artist and I was using my art and music with deep breathing and I taught myself how to lower my blood pressure. I would start the day thinking about surgery and I felt like I was going to get hit by a train and I couldn't get off railroad tracks. I did lots of other things too, and talked to a counselor to make sure I was on the right track. I had a few years working through this and by the time I came to Mayo, I was relaxed and ready with my mind and body for the help I needed. I got the books a year after my surgery at a follow up, and the books explained why my methods had worked to deprogram the anxiety.

You do need good sleep for good health. Sleep apnea is going to interfere and a friend of mine who has sleep apnea told me it is a source of anxiety because her body is in fight or flight mode all night because of not getting enough oxygen. You should still follow up with a doctor about that. You don't want to assume that sleep apnea is the only reason for your fatigue. There are overlapping symptoms for many different conditions, and even though you and I might think we know why, it's very easy to make a mistake. I did that myself and missed a problem with an infection from a tooth with an old root canal because I thought it was sinus problems which I commonly have with my allergies. When I recognized the real problem, the infection had spread in my jawbone and I had oral surgery to clear the infection and a bone graft to replace the bone that had been destroyed.

I agree with @johnbishop that another opinion would benefit you and if you can do that at Mayo, that is what I would recommend. I was amazed by the comprehensive evaluation they gave me and they checked everything that was an issue for me at the time of my surgical evaluation. I have never experienced that degree of expertise and efficiency anywhere else and they didn't waste time. They did more in 2 days than any of the 5 surgeons I saw in the 3 years previously, and my Mayo surgeon got it right. The others had missed the diagnosis and would not help me. In my case, surgery was necessary because of spinal cord compression that would have disabled me.

If you have not seen the recent documentary about Mayo and why it is so successful in treating patients, you can see it online for the next week on the PBS website. They cover the history of Mayo and also several patient stories about their treatments. Here is the link:
https://www.pbs.org/video/the-mayo-clinic-faith-hope-science-czhdtb/
I'm not really sure from your description if you have an injury from a fall or physical problems affecting your work. I know that sometimes problems seem overwhelming, but every journey begins with a single step. You need to advocate for yourself and ask questions of your medical providers about what is best for your treatment. I always try to prevent a medical problem rather than treat the symptoms later. I do see an evironmental medicine doctor or functional medicine doctor outside of Mayo (because I don't live near Mayo).

Here are the books I suggested and they are used in teaching programs at Mayo . The Guide to Stress Free Living is more indepth, and the Handbook for Happiness is like a work book. I bought them and recommend both.
https://marketplace.mayoclinic.com/shop/healthy-lifestyle/book/mayo-clinic-stress-management-combo_752700

Jump to this post

Finally got to watch the Ken Burns special about Mayo clinic last evening - after watching that, if you weren't a patient, you would want to be one!!!! Agree with the others, that's the place to get a second opinion.

REPLY

I'm s 62 year old female and was recently diagnosed with a spinal cyst which they say is causing neuropathy in my legs. However, I'm not convinced that the cyst is causing it. Night time is the worst for me. The burning sensation in one of my feet is sometimes unbearable. I have been subscribed Amtripiline. Does anyone have experience with this? Id rather not take Gabertin.

REPLY
@barbarn

Finally got to watch the Ken Burns special about Mayo clinic last evening - after watching that, if you weren't a patient, you would want to be one!!!! Agree with the others, that's the place to get a second opinion.

Jump to this post

I keep watching it and studying the artistry in the production, and I keep noticing subtle things that say so much and convey the story. It's interesting that when they shift gears from the history to the present, you hear a beeping monitor bringing you back to present tense before the images are displayed. There is also so much honesty and emotion in all the people who are interviewed on film. My husband and I make our own video documentaries and I'm learning so much by studying this one. Ken Burns is a master.

REPLY
@geegie

Hi Everyone,
I'm new to the group and have found your shared information very, very valuable.
I've Short Fiber Neuropathy and if you could please help me by telling me if you went to Mayo Clinic in Arizona. Did you received care to solve your particular situation or if you did not? Thanks so much and I'll look forward to your responses. Rose

Jump to this post

Hello @geegie, Welcome to Connect. I'm glad you found us. There is a large active discussion where your post/question may get better visibility. I am tagging our moderator Kanaaz @kanaazpereira to see if she can move your post to the following discussion for better visibility.

Groups > Neuropathy > Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I have idiopathic small fiber peripheral neuropathy that was diagnosed at Mayo Clinic Rochester. If you would like more information, you can read my story here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@geegie may I ask what symptoms you have with your SFN and what types of treatments you have tried?

John

REPLY

Hi Everyone,
I'm new to the group and have found your shared information very, very valuable.
I've Short Fiber Neuropathy and if you could please help me by telling me if you went to Mayo Clinic in Arizona. Did you received care to solve your particular situation or if you did not? Thanks so much and I'll look forward to your responses. Rose

REPLY
Please sign in or register to post a reply.