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?

Thank you all for for supporting responses. You know I have family, friends, but I do not feel the connection to them with my issues. They are used to me being a handler and am am sure are frightened because they really don't know what to do, although they try. I have stayed with Mayo Clinic Connect for quite awhile sometimes in sometimes out. I have always felt welcomed and always found good suggestions and advise. Today I am feeling such loves and kindness from people I have not met. You have helped more than you know. I plan on staying with you Love to all. Icing my foot right now. That does help.

REPLY

@notborntoburn Thank you for sharing with me. What prompted surgery for the Morton neuroma? What had you tried before surgery was done? This is new to me. All this time this is what I had which was causing the awful pain. I don't understand why no one picked up on it even after an MRI was done. However every symptom is here. My first visit with podiatrist was 1 1/2 weeks ago. He did want to do a shot but I just couldn't subject myself to that pain. He put me on the 5 day med pack and within 2 days the swelling was done and much of the pain. I was also recommended for better shoes that I did not have to squeeze my feet into which will also help with neuropathy. I have been done with the med pack for 4 days and have some swelling a pain. Not as intense and I am treating it with ice. I did not expect for it to disappear after inflamming this foot for over 8 months. I was doing everything I should not have been doing with this issue. It may take surgery sooner than it would have if it would have been treated earlier. How long were you treated before surgery was done and why would the doctor say you didn't follow directions and just leave you. He should still work with you. Sounds like a cop out to me. Can you give me some info from beginning of your journey with these neuromas to now? Thank you.

REPLY
@notborntoburn

I travel this road with you.
Had surgery for Mortans neuroma didn’t work and the dr simply said I didn’t follow his instructions!
The journey is isolating at times but you are not alone.
Yesterday a neuro dr mentioned lidocaine infusion?! Never heard of it but will do some research. I am trying a compounding cream of lidocaine ketamine and Baclofen.
Bless you take care

Jump to this post

There has been recent chat through the forum about lidocaine infusions. I have been receiving them for 2 months. The one thing I can say based on my research is lidocaine appears to be on the come up as replacing opiods for pain relief. It is known to be a safe and effective substitute. I have not had any side effects so will keep pursuing the highest dose until I feel I am receiving adequate pain relief. As of now I have maybe 20-30%. If it doesn't achieve effective pain relief…well then at least I know I've tried. I admire Doctors who bring new treatments to the table and keep trying for their patients.

REPLY
@summertime4

@notborntoburn Thank you for sharing with me. What prompted surgery for the Morton neuroma? What had you tried before surgery was done? This is new to me. All this time this is what I had which was causing the awful pain. I don't understand why no one picked up on it even after an MRI was done. However every symptom is here. My first visit with podiatrist was 1 1/2 weeks ago. He did want to do a shot but I just couldn't subject myself to that pain. He put me on the 5 day med pack and within 2 days the swelling was done and much of the pain. I was also recommended for better shoes that I did not have to squeeze my feet into which will also help with neuropathy. I have been done with the med pack for 4 days and have some swelling a pain. Not as intense and I am treating it with ice. I did not expect for it to disappear after inflamming this foot for over 8 months. I was doing everything I should not have been doing with this issue. It may take surgery sooner than it would have if it would have been treated earlier. How long were you treated before surgery was done and why would the doctor say you didn't follow directions and just leave you. He should still work with you. Sounds like a cop out to me. Can you give me some info from beginning of your journey with these neuromas to now? Thank you.

Jump to this post

Hi
I had tried these awful injections between my toes and many cortisone injections in different parts of my feet,when the surgery caused my feet to feel even worse I saw another podiatrist who,after nerve conduction studies said I should see a neurologist so I began that road of
acupuncture any all drugs surgery to release nerve entrapment and the burn keeps burning!
When I had the surgery for neuromas I had both feet done at the same time and the pain was so intense with all the tight bandages and walking with a walker just to the bathroom,by the tiume I saw the dr. to remove the bandages my skin was raw! He said I must of removed the bandages and put them on too tight,my anger and frustration left me no energy to argue,I just left his office,got my report from the surgery and filed a complaint. I know we have to trust doctors,but they do make mistakes. Neuroma was an easy fix to a much more complexed problem.
We have so much more information and each other to learn from I wish you all the best

REPLY

@notborntoburn So you didn't have Morton neuroma? I am a bit confused. As far as doctors. After 8 months of pain and vague to no answers about the extreme pain in my foot, no I don't trust doctors. Even the podiatrist who finally makes sense with Mortons neuroma leaves me anxious. I know I have neuropathy. How, why and what kind I don't know and really no one doctor cares. I did have the nerve conduction test and I saw the results. I do feel comfortable with the rheumatologist, but what the results are remains to be seen. My issue has been the severe pain in my foot that have made me give up pleasure that I had left in my live. I had my now 3 year old great grand daughter and my grand daughter every weekend. I can no longer keep the baby for a long period of time because the pain and swelling stops me from walking. Both Momma and baby have some issues so I do take over most of the care. I am thankful that their wonderful caretaker whom I consider family bring them every Sunday and they all spend the day. I am lead to believe Morton neuroma can be reduced to no pain but yes I am very fearful. Do they know what your feet problems are and what are they doing for it. Is it part of neuropathy? My prayers for you to get relief.

Liked by Leonard

REPLY
@summertime4

@notborntoburn So you didn't have Morton neuroma? I am a bit confused. As far as doctors. After 8 months of pain and vague to no answers about the extreme pain in my foot, no I don't trust doctors. Even the podiatrist who finally makes sense with Mortons neuroma leaves me anxious. I know I have neuropathy. How, why and what kind I don't know and really no one doctor cares. I did have the nerve conduction test and I saw the results. I do feel comfortable with the rheumatologist, but what the results are remains to be seen. My issue has been the severe pain in my foot that have made me give up pleasure that I had left in my live. I had my now 3 year old great grand daughter and my grand daughter every weekend. I can no longer keep the baby for a long period of time because the pain and swelling stops me from walking. Both Momma and baby have some issues so I do take over most of the care. I am thankful that their wonderful caretaker whom I consider family bring them every Sunday and they all spend the day. I am lead to believe Morton neuroma can be reduced to no pain but yes I am very fearful. Do they know what your feet problems are and what are they doing for it. Is it part of neuropathy? My prayers for you to get relief.

Jump to this post

No I did not have Mortons Neuromas,my sister did had surgery and she is fine! My symptoms were and still are burning in both feet my medical chart says “sensory neuropathy”
with no known cause I do have rheumatoid arthritis but this pain far surpasses any joint pain!
I know some drs dismiss people that they can’t fix but when you find one that tries and validates your feelings even if nothing works, it’s is so comforting to know I am no crazy.
I ended up in a pain management program and will try CBT they don’t offer opioids but it’s where I tried ketamine infusions.
I am pretty sure there is nothing left to try.

Liked by Leonard

REPLY
@notborntoburn

No I did not have Mortons Neuromas,my sister did had surgery and she is fine! My symptoms were and still are burning in both feet my medical chart says “sensory neuropathy”
with no known cause I do have rheumatoid arthritis but this pain far surpasses any joint pain!
I know some drs dismiss people that they can’t fix but when you find one that tries and validates your feelings even if nothing works, it’s is so comforting to know I am no crazy.
I ended up in a pain management program and will try CBT they don’t offer opioids but it’s where I tried ketamine infusions.
I am pretty sure there is nothing left to try.

Jump to this post

I pray you get relief soon. It is so hard being in constant pin and being dismissed by doctors. I know the feeling.

Liked by Leonard

REPLY
@summertime4

I pray you get relief soon. It is so hard being in constant pin and being dismissed by doctors. I know the feeling.

Jump to this post

@summertime4
My Neurologist is very compassionate. My nerve conduction study showed mild to moderate damage but said that doesn’t mean your symptoms are mild to moderate. Sometimes there isn’t much we can do to help neuropathic pain. My PCP put me on Fentanyl and other narcotics and my Neuro agreed to them since they helped.
Jake

REPLY
@colleenyoung

I add my welcome to the new and familiar members, and am excited about having this group dedicated to neuropathy. For those of you who are new to Connect, you may be interested in reading through this discussion where many have shared great tips and thoughts. Join in.

Anyone here dealing with peripheral neuropathy? https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/

Jump to this post

Hi .. just joined . Wondering if someone could recommend something to calm the stinging in my forearms from PN.

Liked by Leonard

REPLY
@lynnaustin

Hi .. just joined . Wondering if someone could recommend something to calm the stinging in my forearms from PN.

Jump to this post

Hi @lynnaustin, Welcome to Connect. I have idiopathic small fiber peripheral neuropathy but I only have numbness in my feet and just above the ankles. I don't have the typical pain or stinging/burning. I'm tagging @artscaping who may be able to share from her experience. You can read what has helped me in an earlier post on Connect where I shared my story: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You might also be interested in another discussion here on Connect:
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Are you able to share a little more about your PN diagnosis and what you have tried for treatments?

REPLY

@lynnaustin, Good morning. Welcome to Connect. I hope your journey with us is helpful and opens doors for your well being, I notice that you are experiencing pain and tingling/stinging sensations in your forearms. Do those feelings begin with your hands and then move up to your forearm? What are you currently using to help with the discomfort?

There are a number of options for you to try. I just need a little more information so that I can respond appropriately and introduce you to some of our helpful mentors and members. We have no medical backgrounds, just a wealth of experience and a willingness to share with you. Finally, how long have you been experiencing this discomfort? May you find joy today. Chris

REPLY

I had an emg done in February of this year . At that time I just had pain and tingling in feet. Since May my hands started to be sensitive to touch and achy. Soon after I started experiencing stinging in my forearms . I’m on Gabapentin for pain and recently started Cymbalta for anxiety. My test in February was done by a DO. I went to a neurologist in June and I’ve had many many tests! I’m scheduled for Emgs of my lower body to compare with my first one in February to see if it’s progressed and a first emg of my hands and arms. So far it seems like it’s idiopathic. I’m not sure if he’s going to send me for a spinal tap. He mentioned it but not recently. The results of my emg stated large fiber sensory neuropathy, small fiber could not be assessed with technique.
Too much info?😊 thanks for replying .

REPLY

I was diagnosed with idiopathic SFN after having a negative result from EMG testing in my feet and legs. I had burning, tingling in my feet and hands and take gabapentin and R -Alpha lipoic acid. It has been 16 mo. since the sudden onset and it has gotten somewhat worse and I have increased my dosage 2x but I have only ever had 1 EMG test done. I think that drs. are only able to treat the pain unfortunately so I have never requested further testing. Whether or not this is smart I don’t know. My greatest hope is that it does not progress too far and that the drug co.’s come up with something better than Gabapentin in the near future. I wish you well.

REPLY

I joined this site a few weeks ago. Thank you everyone for your comments and guidance. How many of you with PN work full-time? What are your tips for working with neuropathy?

REPLY
@lynnaustin

I had an emg done in February of this year . At that time I just had pain and tingling in feet. Since May my hands started to be sensitive to touch and achy. Soon after I started experiencing stinging in my forearms . I’m on Gabapentin for pain and recently started Cymbalta for anxiety. My test in February was done by a DO. I went to a neurologist in June and I’ve had many many tests! I’m scheduled for Emgs of my lower body to compare with my first one in February to see if it’s progressed and a first emg of my hands and arms. So far it seems like it’s idiopathic. I’m not sure if he’s going to send me for a spinal tap. He mentioned it but not recently. The results of my emg stated large fiber sensory neuropathy, small fiber could not be assessed with technique.
Too much info?😊 thanks for replying .

Jump to this post

@lynnaustin Wow…that was fast. Thank you for responding. I am tagging @johnbishop since he also replied to your post. John has been my mentor since I joined Connect a couple of years ago. His forte is research. So ask away and he will delight you with the places he can find for pertinent information.

A couple of notes in response: you have gone halfway with the large fiber sensory neuropathy based on your EMG. As your "neuropathy" has moved to your hands and forearms, I might suggest that you request a skin biopsy to detect small fiber neuropathy (SFN). That test is done in under a minute without discomfort and then sent to a special lab that measures the percentage of nerve activity you have in the sample. These small fiber nerves seem to create pain because when they are unable to do their job, they send back pain signals. @johnbishop can give you a lead to understanding all of the neuropathy situations.

I also see that John has given you the link to MFR therapy. That amazing gentle touching therapy has been my salvation, I go every week. The relief, though not permanent, has been a game-changer for me. Your MFR therapist will also teach you some at-home exercises or treatments that can be helpful when done regularly.

Gabapentin. if you tolerate it well, is my sleep medication. it works on the brain to mask the pain by calming the nerves that create it. My dosage has increased to 1200 mg 1 hr before bedtime. It gets my hands ready for some uninterrupted sleep. Do you take your gabapentin in the evening? If I may ask, what dosage are you using?

Then in the morning I also take duloxetine (Cymbalta) 60 mg. I have worked up to that and if it does nothing more than reduce my anxiety, I am happy. As you probably know, pain can lead to anxiety which can lead to more pain and then you are in a loop.

I am a fan of topicals for quick relief and always have them in my purse. Have you found any balms or lotions or compounds that help you during the day?

Let's start with these ideas. Oh and throw in a hot as possible shower in the morning. Please ask any questions you wish. May you be free of suffering today. Chris

REPLY
Please login or register to post a reply.