1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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.

Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 31, 2019
In reply to @artscaping "@johnbishop, @lynnaustin, So here I go, chiming in again. With all the needlelike pain in my..." + (show)
@artscaping

@johnbishop, @lynnaustin, So here I go, chiming in again. With all the needlelike pain in my hands, the knee and shoulder guy thought it was a neck issue, neck guy wanted to rule out carpal tunnel and sent me to the hand guy.

Hand guy was adamant that it wasn’t carpel tunnel. So they had a confab and the neck guy won. However, at the time, the knee & shoulder guy was getting ready to do some shoulder repair after a fall down the stairs.

I guess the three of them went out for pizza. The next day the neck guy called me and said that the cervical surgery was going to be done first ASAP and then the shoulder and then the hand if there was anything left to fix. I felt like Humpty Dumpty being put back together again.

Fast forward two years later and the hands were quite uncomfortable.

Neurologist, the new guy, wanted to rule out....you guessed it.....carpel tunnel. Hand guy said something like, how many times do I have to say this......,

So the neurologist charged ahead with the skin biopsy and SFN was uncovered. I did appreciate the transparency and the tenacity. I think they all played on the same team in the end. It is your chuckle for the day. Enjoy the evening. Chris

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Makes me feel a little better about my circus!

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 31, 2019
In reply to @summertime4 "I have a question for anyone who might answer. I am told that my extreme foot..." + (show)
@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

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@summertime4 I think I'm with you on the cortisone shot mainly because I think it may only be a temporary solution. I've had 2, one in my knee before I had a replacement that lasted about a week of no more pain...mainly because I kneeled down on concrete which I should not have done. The second shot I received in my left wrist for carpal tunnel and it did nothing for me. Are you able to sit down with the doctor and go over the pros and cons of surgery and if there are additional options besides surgery and a cortisone shot?

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1 reply
summertime4 | @summertime4 | Aug 31, 2019
In reply to @johnbishop "@summertime4 I think I'm with you on the cortisone shot mainly because I think it may..." + (show)
@johnbishop

@summertime4 I think I'm with you on the cortisone shot mainly because I think it may only be a temporary solution. I've had 2, one in my knee before I had a replacement that lasted about a week of no more pain...mainly because I kneeled down on concrete which I should not have done. The second shot I received in my left wrist for carpal tunnel and it did nothing for me. Are you able to sit down with the doctor and go over the pros and cons of surgery and if there are additional options besides surgery and a cortisone shot?

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@johnbishop Thank you for replying. No I haven't really sat down with the doctor. He does seem gun hoe on the shot which of course I am not. I see him next week and will talk with him. Some people tell me the cortisone shot fixes it. To me it is also a temporary fix. I had carpel tunnel surgery years ago and have not had a problem since that time. My other wrist is giving some signs, but right now have to deal with the swelling and foot. I have been to the store for a bit and am now of course on the computer with my foot on ice ad it feels pretty good. Maybe if I can get the neuropathy pain under control my foot won't hurt so bad. I will take your advise and talk with doc. I have a feeling that Medicare will not pay for surgery until all other resources are used to no avail. I know they will not pay for an MRI until an Xray is done first. They are wasting our money because xrays miss so much. I am also dealing now with the nodules found on my thyroid 3 years ago being larger this ultra sound and a new one. This just came in yesterday so doctor won't see until Tues because of the Holiday.. Just added that because I have not told anyone and I think I am concerned although I tell myself not to until the doctor sees it.. I also have nodules on my lungs and will be scheduling a CAT scan next week to see if they are stable. Yikes and now worry about sticking a BIG BAD NEEDLE in my foot. I will be in Church early tomorrow for sure. Thank you everyone. I talk more to you than to my family.

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1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Aug 31, 2019
In reply to @summertime4 "@johnbishop Thank you for replying. No I haven't really sat down with the doctor. He does..." + (show)
@summertime4

@johnbishop Thank you for replying. No I haven't really sat down with the doctor. He does seem gun hoe on the shot which of course I am not. I see him next week and will talk with him. Some people tell me the cortisone shot fixes it. To me it is also a temporary fix. I had carpel tunnel surgery years ago and have not had a problem since that time. My other wrist is giving some signs, but right now have to deal with the swelling and foot. I have been to the store for a bit and am now of course on the computer with my foot on ice ad it feels pretty good. Maybe if I can get the neuropathy pain under control my foot won't hurt so bad. I will take your advise and talk with doc. I have a feeling that Medicare will not pay for surgery until all other resources are used to no avail. I know they will not pay for an MRI until an Xray is done first. They are wasting our money because xrays miss so much. I am also dealing now with the nodules found on my thyroid 3 years ago being larger this ultra sound and a new one. This just came in yesterday so doctor won't see until Tues because of the Holiday.. Just added that because I have not told anyone and I think I am concerned although I tell myself not to until the doctor sees it.. I also have nodules on my lungs and will be scheduling a CAT scan next week to see if they are stable. Yikes and now worry about sticking a BIG BAD NEEDLE in my foot. I will be in Church early tomorrow for sure. Thank you everyone. I talk more to you than to my family.

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@summertime4 My wife and I have had multiple cortisone shots, with some working for a short time, others not helping at all. And yes, they're painful, but when they help, they're a Godsend. Has a doctor mentioned synvisc injections? They're less toxic than cortisone.

Are your feet numb? If so, you might find that a shot there wouldn't hurt, at least not as much. I had a muscle biopsy, which was a series of punctures, beginning at the waist and moving downward. While the needle was in I had to flex that muscle. Talk about painful!!

But the last one was in the top of my foot next to my toes. I didn't feel that one at all. That was kinda concerning.

Jim

REPLY
1 reply
JK | @contentandwell | Aug 31, 2019
In reply to @jimhd "@summertime4 My wife and I have had multiple cortisone shots, with some working for a short..." + (show)
@jimhd

@summertime4 My wife and I have had multiple cortisone shots, with some working for a short time, others not helping at all. And yes, they're painful, but when they help, they're a Godsend. Has a doctor mentioned synvisc injections? They're less toxic than cortisone.

Are your feet numb? If so, you might find that a shot there wouldn't hurt, at least not as much. I had a muscle biopsy, which was a series of punctures, beginning at the waist and moving downward. While the needle was in I had to flex that muscle. Talk about painful!!

But the last one was in the top of my foot next to my toes. I didn't feel that one at all. That was kinda concerning.

Jim

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@jimhd @summertime4 Synvisc shots are specifically used to replace the synovial fluid in knees. Some doctors do use it off-label, but from what I understand, it is just for arthritis where that fluid is depleted. I had it in my knees before finally having 2 TKRs.
I have also had cortisone in my knees before synvisc, in my hips for bursitis, and in a shoulder. After a couple of shots in my shoulder the problem resolved. It always did help with everything except the bursitis, many doctors simply don’t hit the right spot. I finally found a doctor who gets it right every time though, and that’s all I go to him for because he’s sort of inconvenient.
I never found cortisone shots to be painful but the synvisc ones can be. The needle is a larger gauge because synvisc is a gel. I did get used to them though.
JK

REPLY
kansasgal | @kansasgal | Aug 31, 2019
In reply to @summertime4 "I have a question for anyone who might answer. I am told that my extreme foot..." + (show)
@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.

REPLY
1 reply
summertime4 | @summertime4 | Aug 31, 2019
In reply to @kansasgal "I was also told the extreme pain in my feet was Morton's Neuroma. I had the..." + (show)
@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
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 31, 2019
In reply to @summertime4 "@kansasgal Thank you. Oh my. A doctor did the Morton neuroma surgery and you did not..." + (show)
@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.

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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.

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1 reply
Leonard | @jakedduck1 | Aug 31, 2019
In reply to @rwinney "Sorry for butting in but wanted to recommend asking your Neurologist about IV Lidocaine infusions for..." + (show)
@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.

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

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1 reply
Leonard | @jakedduck1 | Aug 31, 2019
In reply to @summertime4 "@kansasgal Thank you. Oh my. A doctor did the Morton neuroma surgery and you did not..." + (show)
@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

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