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?

@summertime4

I have a question for anyone who might answer. I am told that my extreme foot pain is Mortons Neuroma. I believe this diagnosis. I alsohave so many other painful problems including peripheral neuropathy fibromyalgia and pus swelling in my left leg especially. I have had a crew of doctors all telling me something different. However, this podiatrist seems to have hit upon something. I have the large Adams Family Shoes and inserts and I ice. I was first given the med pack (steroid) oral 5 day pack and it help so much to bring the inflammation down which decreased the pain for a short time. He is adament about me having the cortisone shot in my foot. Have I agreed yet HECK NO. One of the most painful shots. I had two in my knee and swore never again anywhere and now foot. One of the crew doctors said surgery will take care of it with no problem saying that it has not been diagnosed and treated for such a long time that it is too severe for less invasive treatment. I have not talked to the podiatrist about this but I believe and agree he wants to avoid surgery I get so upset because here is another avenue of pain and the thought of self inflicted (cortisone shot) I do not want

Jump to this post

I was also told the extreme pain in my feet was Morton's Neuroma. I had the cortisone shots, and it definitely helped ease the pain, BUT after only 2 days the pain returned. The dr said that was enough proof for him to do the Mortons Neuroma surgery. I had the surgery done and obviously that was NOT the issue. The pain started returning about 2 days after surgery, even with pain meds. I was on pain meds for about 6 years due to horrible pain in my feet. I can not take pain meds now because drs here do not prescribe them anymore, and pain clinic told me pain meds are not indicated for neuropathy. After more than a year of going to a neurologist I have found something that works for me. I'm not in excruciating pain every second of every hour. I take 5 or 6 Gabapentin 300 mg spaced out during the day/evening, and 100 mg Lyrica 3x/day. The BIGGEST change was when I started taking 40 mg of Nortriptyline at bedtime. I sure hope this information helps you.

Liked by Leonard, rwinney

REPLY
@kansasgal

I was also told the extreme pain in my feet was Morton's Neuroma. I had the cortisone shots, and it definitely helped ease the pain, BUT after only 2 days the pain returned. The dr said that was enough proof for him to do the Mortons Neuroma surgery. I had the surgery done and obviously that was NOT the issue. The pain started returning about 2 days after surgery, even with pain meds. I was on pain meds for about 6 years due to horrible pain in my feet. I can not take pain meds now because drs here do not prescribe them anymore, and pain clinic told me pain meds are not indicated for neuropathy. After more than a year of going to a neurologist I have found something that works for me. I'm not in excruciating pain every second of every hour. I take 5 or 6 Gabapentin 300 mg spaced out during the day/evening, and 100 mg Lyrica 3x/day. The BIGGEST change was when I started taking 40 mg of Nortriptyline at bedtime. I sure hope this information helps you.

Jump to this post

@kansasgal Thank you. Oh my. A doctor did the Morton neuroma surgery and you did not have it. Oh my again. This certainly concerns me. What is the issue with your foot? I have neuropathy which affects my legs, but this pain is different and meets all the criteria of Morton's neuroma. Was it a neuroma along with neuropathy? I was taking Gabapentin until I saw a neurologist who immediately took me off it because of the major swelling in my foot and leg. She said Gabapentin can add to swelling She put me on Topamax. The swelling continues so obviously it was not the Gabapentin I am now back on Gabapentin, but very low amount. I am sure that will be increased by someone I also take Amitriptyline 50 mg at bedtime. This is an older antidepressant (elavil) and is used at a low dose for neuropathy. I do sleep better Nothing medication wise including pain pills, stop the foot pain. Ice and topicals help the most. Thank you for your information. It is greatly appreciated.

REPLY
@summertime4

@kansasgal Thank you. Oh my. A doctor did the Morton neuroma surgery and you did not have it. Oh my again. This certainly concerns me. What is the issue with your foot? I have neuropathy which affects my legs, but this pain is different and meets all the criteria of Morton's neuroma. Was it a neuroma along with neuropathy? I was taking Gabapentin until I saw a neurologist who immediately took me off it because of the major swelling in my foot and leg. She said Gabapentin can add to swelling She put me on Topamax. The swelling continues so obviously it was not the Gabapentin I am now back on Gabapentin, but very low amount. I am sure that will be increased by someone I also take Amitriptyline 50 mg at bedtime. This is an older antidepressant (elavil) and is used at a low dose for neuropathy. I do sleep better Nothing medication wise including pain pills, stop the foot pain. Ice and topicals help the most. Thank you for your information. It is greatly appreciated.

Jump to this post

Sorry for butting in but wanted to recommend asking your Neurologist about IV Lidocaine infusions for your neuropathy pain. They have been giving me a decent percentage of relief in addition to my other treatments and allowing me to finally get the most benefit from my pain pill. Im sorry you are struggling and hope some relief comes your way soon.

REPLY
@rwinney

Sorry for butting in but wanted to recommend asking your Neurologist about IV Lidocaine infusions for your neuropathy pain. They have been giving me a decent percentage of relief in addition to my other treatments and allowing me to finally get the most benefit from my pain pill. Im sorry you are struggling and hope some relief comes your way soon.

Jump to this post

@rwinne
Does the lidocaine help the numbness at all?
Jake

REPLY
@summertime4

@kansasgal Thank you. Oh my. A doctor did the Morton neuroma surgery and you did not have it. Oh my again. This certainly concerns me. What is the issue with your foot? I have neuropathy which affects my legs, but this pain is different and meets all the criteria of Morton's neuroma. Was it a neuroma along with neuropathy? I was taking Gabapentin until I saw a neurologist who immediately took me off it because of the major swelling in my foot and leg. She said Gabapentin can add to swelling She put me on Topamax. The swelling continues so obviously it was not the Gabapentin I am now back on Gabapentin, but very low amount. I am sure that will be increased by someone I also take Amitriptyline 50 mg at bedtime. This is an older antidepressant (elavil) and is used at a low dose for neuropathy. I do sleep better Nothing medication wise including pain pills, stop the foot pain. Ice and topicals help the most. Thank you for your information. It is greatly appreciated.

Jump to this post

@summertime4
Just curious how the Topamax or as it’s known in Seizure circles
“Dope-a-max” is working. Is it causing cognitive side effects? I wouldn’t be surprised if tingling and numbness were actually getting worse not to mention language issues, tiredness, memory and vision problems. I refuse to take it. I hope it works well for you.
Jake

REPLY
@jakedduck1

@rwinne
Does the lidocaine help the numbness at all?
Jake

Jump to this post

My numbness is not nor has ever been permanent. My shoulder, arm and hand experience it in intervals regardless of lidocaine but not as often since. For me lidocaine infusions have relieved pain, aching and cramping in calves that had been preventing me from walking in addition to overall relief of pain throughout my body.

REPLY
@rwinney

My numbness is not nor has ever been permanent. My shoulder, arm and hand experience it in intervals regardless of lidocaine but not as often since. For me lidocaine infusions have relieved pain, aching and cramping in calves that had been preventing me from walking in addition to overall relief of pain throughout my body.

Jump to this post

@rwinney
Thank you for your prompt reply. You say infusion, are you talking about IV infusion? Which doctor orders it? Do you infuse at home or go to the doctor and how often is the infusion done and how long does it take? What is your dose? My experience with lidocaine is that it doesn’t last very long.
I’ve only used lidocaine spray for my mouth because of bitting my tongue and cheeks. Also injections for stitches which are short acting. I remember I couldn’t use very much.
Jake

REPLY
@jakedduck1

@rwinney
Thank you for your prompt reply. You say infusion, are you talking about IV infusion? Which doctor orders it? Do you infuse at home or go to the doctor and how often is the infusion done and how long does it take? What is your dose? My experience with lidocaine is that it doesn’t last very long.
I’ve only used lidocaine spray for my mouth because of bitting my tongue and cheeks. Also injections for stitches which are short acting. I remember I couldn’t use very much.
Jake

Jump to this post

Good morning Jake,
My neurologist orders and I go to my local Apheresis/Infusion unit of a hospital once a week to receive 900mg of intraveneous lidocaine. I am hooked up to heart monitors as its important for constant monitoring. Lidocaine infuses by a slow drip over 4 hours and vitals are taken every 15 minutes for first hour then every half hour for the duration. I have been receiving lidocaine infusions for 11 weeks and began at 600mg. Slowly increase over time until you feel you are receiving proper benefit. I'm meeting with neurologist in 2 weeks to discuss my over all plan. I believe he can increase the dose one more time to max it out and that doseage is based on weight and age by formula. Hope this helps!
I do believe it is well worth the try for anyone with chronic neuropathic pain or fibromyalgia. Good luck!

REPLY
@rwinney

Good morning Jake,
My neurologist orders and I go to my local Apheresis/Infusion unit of a hospital once a week to receive 900mg of intraveneous lidocaine. I am hooked up to heart monitors as its important for constant monitoring. Lidocaine infuses by a slow drip over 4 hours and vitals are taken every 15 minutes for first hour then every half hour for the duration. I have been receiving lidocaine infusions for 11 weeks and began at 600mg. Slowly increase over time until you feel you are receiving proper benefit. I'm meeting with neurologist in 2 weeks to discuss my over all plan. I believe he can increase the dose one more time to max it out and that doseage is based on weight and age by formula. Hope this helps!
I do believe it is well worth the try for anyone with chronic neuropathic pain or fibromyalgia. Good luck!

Jump to this post

Jake~
I just checked your bio and I wanted you to read the attached link due to your diagnosis. Lidocaine IV may not did work for your diagnosis but, I'm not a doctor of course. Speak to your neurologist.
https://anesthesiology.pubs.asahq.org/article.aspx?articleid=1944222

REPLY
@rwinney

Good morning Jake,
My neurologist orders and I go to my local Apheresis/Infusion unit of a hospital once a week to receive 900mg of intraveneous lidocaine. I am hooked up to heart monitors as its important for constant monitoring. Lidocaine infuses by a slow drip over 4 hours and vitals are taken every 15 minutes for first hour then every half hour for the duration. I have been receiving lidocaine infusions for 11 weeks and began at 600mg. Slowly increase over time until you feel you are receiving proper benefit. I'm meeting with neurologist in 2 weeks to discuss my over all plan. I believe he can increase the dose one more time to max it out and that doseage is based on weight and age by formula. Hope this helps!
I do believe it is well worth the try for anyone with chronic neuropathic pain or fibromyalgia. Good luck!

Jump to this post

@rwinney I've never heard about the lidocaine infusion. I use it as a cream, which of course is temporary. I'm going to Google it and speak with my doctor about it next week.

You say you're on six weeks. Will you need to have the infusion weekly indefinitely?

Jim

REPLY

Summertime4, I had the Mortons Neuroma surgery only on my right foot. Today (1 and a half years after) the pain in both feet is still exactly the same, so I did not have Mortons Neuroma. I also had swelling on the top of my feet, and found out too late that Mortons Neuroma does not cause any swelling. It sounds like we are on the same meds, except I also take Lyrica. It now comes in a generic, so it's a lot more inexpensive than it was last month! Maybe adding Lyrica into your mix might help you as well.

REPLY
@jimhd

@rwinney I've never heard about the lidocaine infusion. I use it as a cream, which of course is temporary. I'm going to Google it and speak with my doctor about it next week.

You say you're on six weeks. Will you need to have the infusion weekly indefinitely?

Jim

Jump to this post

Hi Jim
Definitely check it out. Tuesday will be my 12th weekly visit. I am meeting with my neurologist in 2 weeks to discuss whether another increase is necessary. At that time I will ask questions about the frequency. My Dr. never likes to go farther than the moment as there are so many variables with this disease, from patient to patient. The one thing I have been made to learn is that my life is now forcibly lived one day at a time. I believe (via the internet) that infusions may be given on a variety of intervals based on need. I will be curious to find out how you make out once speaking with your neurologist. Good luck!

REPLY
@summertime4

I have a question for anyone who might answer. I am told that my extreme foot pain is Mortons Neuroma. I believe this diagnosis. I alsohave so many other painful problems including peripheral neuropathy fibromyalgia and pus swelling in my left leg especially. I have had a crew of doctors all telling me something different. However, this podiatrist seems to have hit upon something. I have the large Adams Family Shoes and inserts and I ice. I was first given the med pack (steroid) oral 5 day pack and it help so much to bring the inflammation down which decreased the pain for a short time. He is adament about me having the cortisone shot in my foot. Have I agreed yet HECK NO. One of the most painful shots. I had two in my knee and swore never again anywhere and now foot. One of the crew doctors said surgery will take care of it with no problem saying that it has not been diagnosed and treated for such a long time that it is too severe for less invasive treatment. I have not talked to the podiatrist about this but I believe and agree he wants to avoid surgery I get so upset because here is another avenue of pain and the thought of self inflicted (cortisone shot) I do not want

Jump to this post

I do not have Mortons Neuroma but I do have Complex Regional Pain Syndrome in both feet. I have a great pain management doc who is brilliant at what he does. He injected the sural nerve with an anesthetic. He hit the spot and now this week I am having radio frequency ablation. With RFA I have had relief from occipital headaches for almost 2 years so I have great hopes to keep the CRPS sharp, lightning pain at bay. The reason I have CRPS is because of 3 surgeries on the same foot. I would make surgery the very last resort.

REPLY

This is a remarkable group. We haven't met in person, yet, we care and we help each other. Thank you. Peggy

REPLY
@rwinney

Hi Jim
Definitely check it out. Tuesday will be my 12th weekly visit. I am meeting with my neurologist in 2 weeks to discuss whether another increase is necessary. At that time I will ask questions about the frequency. My Dr. never likes to go farther than the moment as there are so many variables with this disease, from patient to patient. The one thing I have been made to learn is that my life is now forcibly lived one day at a time. I believe (via the internet) that infusions may be given on a variety of intervals based on need. I will be curious to find out how you make out once speaking with your neurologist. Good luck!

Jump to this post

@rwinney Do you know a link to information about lidocaine infusion?

REPLY
Please login or register to post a reply.