1. < Neuropathy

Electric shock type pain in ankle

Posted by marshabel @marshabel, Aug 11, 2020

I have just recently(in the last few months) started having severe pain in one ankle. I do have the neuropathy diagnosis which my doctor feels is a long term effect of chemotherapy I received for breast cancer eleven years ago. I was started on Gabapentin 100mg 3x per day, but after about 4 weeks I had to increase it to 200mg 3x per day. Again, after about 4 weeks, my pain is getting worse. In addition, my symptoms are beginning to move up my leg. The ankle pain can be so severe, and I have not found anything that relieves it. I had a fall a couple of days ago, and am worried about losing my mobility. Does anyone have any similar symptoms? Also, I am unable to take any supplements due to a liver disorder. Any suggestions would be welcome!

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

Mentor
Jim, Volunteer Mentor | @jimhd | Aug 11, 2020

@marshabel If you browse through the list of discussions in the neuropathy category, you will find quite a number of discussions about your symptoms. @johnbishop is very good at directing you to the most relevant conversation threads. Is balance a problem for you? That's one of the signs of a different neuropathy - autonomic neuropathy.

I have serious pain in my feet and ankles from sfpn, and have tried a ton of medications, and had a spinal cord stimulator implant in 2017, and still live with significant pain.

Since I was a child I've rolled my ankles, but in the past few years it's become worse, and each time the pain in my ankle hurt longer. Our orthopedist finally took a good look at the ankle that gave me the most trouble, and after trying a couple of braces, surgery was indicated. He repaired ligaments and tendons and put an internal permanent brace in. No more rolling. But, and I now get to the point, after 18 months, it still hurts in a way that's different from my other ankle, and the pain is different from the neuropathy pain I already had. I'm quite sure that the pain would have cleared up by now if neuropathy weren't involved.

Gabapentin affected my clarity of thought, so I had to stop taking it. I've learned over the past 5+ years that there are many meds that can be prescribed for neuropathy. I tried the ones on my pcp's list, then I moved on to taking everything on my neurologist's list, and now I've essentially exhausted my pain specialist's list.

Somewhere along the way, my pcp prescribed morphine sulfate contin, which is the only medication that's helped long term.

I learned a month ago that I have severe spinal stenosis in the lumbar section, and it's possible that it's contributing to the pain in my feet. It's really constricted the spinal canal that carries the nerves to my hands and feet. I scheduled the surgery for late September (it had to be after my very busy yard and garden season). I'm sure hopeful that it's going to help me.

Treating pn is pretty much trial and error. Sorry to tell you that. It can be a lengthy process, unless you happen to find the right treatment early on. I hope that will be the case for you.

I know too well the scariness and frustration of going through this process, so please know that there are many of us here who understand what you're dealing with.

Stay safe. Advocate for yourself. Know that you aren't alone.

Jim

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 11, 2020

Hello @marshabel, I would like to add my welcome to Connect along with @jimhd and other members. Since you mentioned you only started having the severe pain in the left ankle the past few months I'm wondering if it might be due to something else like Tarsal Tunnel Syndrome which ... "in some individuals, symptoms may affect one spot such as the inside of the ankle. In other individuals, symptoms can affect the ankle, heel and foot." -- Tarsal Tunnel Syndrome: https://rarediseases.org/rare-diseases/tarsal-tunnel-syndrome/.

Does this sound similar to your symptoms?

REPLY
1 reply
marshabel | @marshabel | Aug 12, 2020
In reply to @jimhd "@marshabel If you browse through the list of discussions in the neuropathy category, you will find..." + (show)
@jimhd

@marshabel If you browse through the list of discussions in the neuropathy category, you will find quite a number of discussions about your symptoms. @johnbishop is very good at directing you to the most relevant conversation threads. Is balance a problem for you? That's one of the signs of a different neuropathy - autonomic neuropathy.

I have serious pain in my feet and ankles from sfpn, and have tried a ton of medications, and had a spinal cord stimulator implant in 2017, and still live with significant pain.

Since I was a child I've rolled my ankles, but in the past few years it's become worse, and each time the pain in my ankle hurt longer. Our orthopedist finally took a good look at the ankle that gave me the most trouble, and after trying a couple of braces, surgery was indicated. He repaired ligaments and tendons and put an internal permanent brace in. No more rolling. But, and I now get to the point, after 18 months, it still hurts in a way that's different from my other ankle, and the pain is different from the neuropathy pain I already had. I'm quite sure that the pain would have cleared up by now if neuropathy weren't involved.

Gabapentin affected my clarity of thought, so I had to stop taking it. I've learned over the past 5+ years that there are many meds that can be prescribed for neuropathy. I tried the ones on my pcp's list, then I moved on to taking everything on my neurologist's list, and now I've essentially exhausted my pain specialist's list.

Somewhere along the way, my pcp prescribed morphine sulfate contin, which is the only medication that's helped long term.

I learned a month ago that I have severe spinal stenosis in the lumbar section, and it's possible that it's contributing to the pain in my feet. It's really constricted the spinal canal that carries the nerves to my hands and feet. I scheduled the surgery for late September (it had to be after my very busy yard and garden season). I'm sure hopeful that it's going to help me.

Treating pn is pretty much trial and error. Sorry to tell you that. It can be a lengthy process, unless you happen to find the right treatment early on. I hope that will be the case for you.

I know too well the scariness and frustration of going through this process, so please know that there are many of us here who understand what you're dealing with.

Stay safe. Advocate for yourself. Know that you aren't alone.

Jim

Jump to this post

Thanks for your reply, Jim. Balance is not a problem for me, it's more of an ankle thing. I had the nerve conduction test which apparently told them that the problem is not coming from my spine. I know that I am early in this process, so I hear you about trial and error! It sounds like you have been through quite a lot, and I hope that your surgery helps you to get some relief.
Marsha

REPLY
marshabel | @marshabel | Aug 12, 2020
In reply to @johnbishop "Hello @marshabel, I would like to add my welcome to Connect along with @jimhd and other..." + (show)
@johnbishop

Hello @marshabel, I would like to add my welcome to Connect along with @jimhd and other members. Since you mentioned you only started having the severe pain in the left ankle the past few months I'm wondering if it might be due to something else like Tarsal Tunnel Syndrome which ... "in some individuals, symptoms may affect one spot such as the inside of the ankle. In other individuals, symptoms can affect the ankle, heel and foot." -- Tarsal Tunnel Syndrome: https://rarediseases.org/rare-diseases/tarsal-tunnel-syndrome/.

Does this sound similar to your symptoms?

Jump to this post

Hi, John! Thank you for your reply and info about TTS. Some of my symptoms are similar, but when I had an EMG, the doctor felt that it was neuropathy caused by chemotherapy. I had a recurrence after my first cancer, then had to have second course of chemo. Any info is appreciated, however!

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 12, 2020
In reply to @marshabel "Hi, John! Thank you for your reply and info about TTS. Some of my symptoms are..." + (show)
@marshabel

Hi, John! Thank you for your reply and info about TTS. Some of my symptoms are similar, but when I had an EMG, the doctor felt that it was neuropathy caused by chemotherapy. I had a recurrence after my first cancer, then had to have second course of chemo. Any info is appreciated, however!

Jump to this post

@marshabel, You may want to check out this discussion in the Cancer group where members have shared their experiences with chemo induced neuropathy and what helps them.

– Chemotherapy-induced neuropathy: What helps get rid of it?https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/

Have you tried any lifestyle changes or supplements to help with the neuropathy?

REPLY
1 reply
marshabel | @marshabel | Aug 13, 2020
In reply to @johnbishop "@marshabel, You may want to check out this discussion in the Cancer group where members have..." + (show)
@johnbishop

@marshabel, You may want to check out this discussion in the Cancer group where members have shared their experiences with chemo induced neuropathy and what helps them.

– Chemotherapy-induced neuropathy: What helps get rid of it?https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/

Have you tried any lifestyle changes or supplements to help with the neuropathy?

Jump to this post

Thanks, John, I will look for something in the cancer group. As far as lifestyle changes, I am currently trying to lose weight. I was just also diagnosed with NASH so my doctor says no supplements, anti-inflammatories, and very limited Tylenol.

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