I posted here somewhere else before, just updating....
I have neuropathy in the feet: strictly numbness, no tingling or other.
It started all of a sudden in the left foot, 3 years ago.
Detail: it did not start in the toes, it started in the whole front of the foot (mid point forward) all at once.
A year later it moved to the right foot.
It is gradually getting worse in both feet.
B12 is low but I take shots for it.
Fasting glucose is in low 100s, so a bit high, but A1C is always fine.
No alcohol, smoking or drugs.
I do have an issue in my lower back, but people looking at MRI do not thing that is an issue.
I had a doctor do a spinal epidural anyways -- he used anesthetic not cortisone (he was reluctant on the cortisone) which had no effect at all. Maybe try cortisone?
Been to 2 neurologists, both conclude unknown cause.
PT I went to thinks it is the back, because one visit he worked on my back and it made it better -- but in other visits, the same work had no effect, so inconclusive.
My regular doctor says circulation is fine.
If it matters, I have that thing where if I bend my elbow for a while, my hand goes numb.
But permanent numbness is only in the feet.
Only drug I take is lisinopril for high blood pressure (which is not very high)
I was put in a statin a year before this started -- which makes me wonder, as I know that can be a cause? -- but I stopped back then because cardiologist said I don't need it.
I walk 2 hours a day, love walking.
I can live with it, but worry it will get worse.
Not sure what else to do.
I posted here somewhere else before, just updating....
I have neuropathy in the feet: strictly numbness, no tingling or other.
It started all of a sudden in the left foot, 3 years ago.
Detail: it did not start in the toes, it started in the whole front of the foot (mid point forward) all at once.
A year later it moved to the right foot.
It is gradually getting worse in both feet.
B12 is low but I take shots for it.
Fasting glucose is in low 100s, so a bit high, but A1C is always fine.
No alcohol, smoking or drugs.
I do have an issue in my lower back, but people looking at MRI do not thing that is an issue.
I had a doctor do a spinal epidural anyways -- he used anesthetic not cortisone (he was reluctant on the cortisone) which had no effect at all. Maybe try cortisone?
Been to 2 neurologists, both conclude unknown cause.
PT I went to thinks it is the back, because one visit he worked on my back and it made it better -- but in other visits, the same work had no effect, so inconclusive.
My regular doctor says circulation is fine.
If it matters, I have that thing where if I bend my elbow for a while, my hand goes numb.
But permanent numbness is only in the feet.
Only drug I take is lisinopril for high blood pressure (which is not very high)
I was put in a statin a year before this started -- which makes me wonder, as I know that can be a cause? -- but I stopped back then because cardiologist said I don't need it.
I walk 2 hours a day, love walking.
I can live with it, but worry it will get worse.
Not sure what else to do.
Hi @rickhood, If you ever want to find an older comment you posted, just click on your member name to go your profile and settings. Then click Comments at the left and you will see your most recent post at the top. You can also get to your profile and settings by clicking the profile icon at the top right corner of the screen.
Walking is good and something I wished I was able to do more. I'm not sure if you have done any research on neuropathy and things you can do to help yourself but the Foundation for Peripheral Neuropathy has some things others have found helpful here - https://www.foundationforpn.org/living-well/
I just joined the forum. I was recently diagnosed with peripheral nephropathy. I was in the hospital last week the pain was so bad. They gave me a prescription for Gabapentin, that's it. Pain level is usually about 9 especially when I go to sleep.? I am using Medical Marijuana for pain, walking/exercising,eating well,and resting. I slept two 3 1/2 hour shifts last night...woke with pain in between. This is new to me. I am 70 and old age is a little different than I imagined it would be. I guess I need support from others who understand how scary and painful this illness is.
I just joined the forum. I was recently diagnosed with peripheral nephropathy. I was in the hospital last week the pain was so bad. They gave me a prescription for Gabapentin, that's it. Pain level is usually about 9 especially when I go to sleep.? I am using Medical Marijuana for pain, walking/exercising,eating well,and resting. I slept two 3 1/2 hour shifts last night...woke with pain in between. This is new to me. I am 70 and old age is a little different than I imagined it would be. I guess I need support from others who understand how scary and painful this illness is.
Hello @pacodennis, Welcome to Connect. You are not alone. I'm 79 and this neuropathy crept up on me for 20+ years. For me, it's not life threatening but it does make old age a little different than I also imagined. I posted my story in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/.
I do think acceptance is part of our journey and think you might find this older discussion somewhat helpful knowing what other members have shared on the topic.
-- Acceptance: Anyone have difficulty accepting new limitations daily?: https://connect.mayoclinic.org/discussion/acceptance/
It can be scary at times and one thing that I think is helpful is to learn as much as you can about your diagnosis and available treatments. Here are a couple of my favorite sites to learn more:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
It sounds like you already doing some of the more important things for living healthy. Have you done any research on complemenary or integrative therapies for neuropathy?
Hello @pacodennis, Welcome to Connect. You are not alone. I'm 79 and this neuropathy crept up on me for 20+ years. For me, it's not life threatening but it does make old age a little different than I also imagined. I posted my story in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/.
I do think acceptance is part of our journey and think you might find this older discussion somewhat helpful knowing what other members have shared on the topic.
-- Acceptance: Anyone have difficulty accepting new limitations daily?: https://connect.mayoclinic.org/discussion/acceptance/
It can be scary at times and one thing that I think is helpful is to learn as much as you can about your diagnosis and available treatments. Here are a couple of my favorite sites to learn more:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
It sounds like you already doing some of the more important things for living healthy. Have you done any research on complemenary or integrative therapies for neuropathy?
I looked into pain management clinics. I still need a referral from my PCP to get a specific diagnosis which will be a couple months. I get pretty depressed at times, and need to make it till I can see the specialist.
I posted here somewhere else before, just updating....
I have neuropathy in the feet: strictly numbness, no tingling or other.
It started all of a sudden in the left foot, 3 years ago.
Detail: it did not start in the toes, it started in the whole front of the foot (mid point forward) all at once.
A year later it moved to the right foot.
It is gradually getting worse in both feet.
B12 is low but I take shots for it.
Fasting glucose is in low 100s, so a bit high, but A1C is always fine.
No alcohol, smoking or drugs.
I do have an issue in my lower back, but people looking at MRI do not thing that is an issue.
I had a doctor do a spinal epidural anyways -- he used anesthetic not cortisone (he was reluctant on the cortisone) which had no effect at all. Maybe try cortisone?
Been to 2 neurologists, both conclude unknown cause.
PT I went to thinks it is the back, because one visit he worked on my back and it made it better -- but in other visits, the same work had no effect, so inconclusive.
My regular doctor says circulation is fine.
If it matters, I have that thing where if I bend my elbow for a while, my hand goes numb.
But permanent numbness is only in the feet.
Only drug I take is lisinopril for high blood pressure (which is not very high)
I was put in a statin a year before this started -- which makes me wonder, as I know that can be a cause? -- but I stopped back then because cardiologist said I don't need it.
I walk 2 hours a day, love walking.
I can live with it, but worry it will get worse.
Not sure what else to do.
I posted this comment also, but after much research I found a study that got good results using a combination of 300 mg of CoQ10 and 20 mg of PQQ daily. It has made a huge difference for me. Not an overnight cure, but could help prevent further progression.
Thank you for your reply.
I often used deep breathing to help me fall asleep. Breathing in, holding
for 4 seconds breathing out for 4 seconds. Concentration on breathing
turning my thoughts from pain.
I have read about mantras now that you mention it. I need to practice them.
I walk daily and I think making positive statements may help me from
letting my mind wander. Walking and stretching seem to really decrease
pain. I don't have certain stretches or exercises but I am willing to try
new things or sequences that anyone suggests.
Gabapentin is a miracle drug for many people. Physicians have such few
drugs to use for neuropathic pain. When I was initially hospitalized for
what I now know as small fiber neuropathy, I was prescribeda taporing dose
of Gabapentin. When I was at 1200 mg I began having slight muscle spasms
and sudden depression. It is hard to explain, but it was frightening and
the doctor tapored me off of Gabapentin. The dark depression lifted and
pain increased. The medication was put on my allergy list. In June of
2021, I was placed back on Gabapentin out of desperation for pain control.
I was told that it was rare that I would experience thevsame side effect.I
had the same side effect. Currently, I work closely with a doctor.
Taporing me off of prednisone and Gabapentin would be very bad for my
health. So I will wait. I tell myself that my feelings often reflect
prednisone withdrawal and Gabapentin. Not my true feeling. I am ok and my
future is going to be wonderful. I pray for patience. I guess maybe that
is like a mantra.
Like I said, Lyrica and Gabapentin are wonder drugs. They help many
people. I just was very unlucky. And am lucky to have a husband and a
doctor to hold my hand during my journey.
@graysea I like your positive self talk and personal mantras. It sounds to me like you are doing a pretty good job despite some bumps in the road and will persevere.
I'm sorry you were so unlucky. Having a support system as you do with your husband and doctor are a blessing.
Here is one of my favorite mantras...
"We cannot direct the wind
But we can adjust the sails."
~ Dolly Parton
I adopted it right after graduation from the Mayo Pain Rehab Center. Mindset is everything....you got this!
I just joined the forum. I was recently diagnosed with peripheral nephropathy. I was in the hospital last week the pain was so bad. They gave me a prescription for Gabapentin, that's it. Pain level is usually about 9 especially when I go to sleep.? I am using Medical Marijuana for pain, walking/exercising,eating well,and resting. I slept two 3 1/2 hour shifts last night...woke with pain in between. This is new to me. I am 70 and old age is a little different than I imagined it would be. I guess I need support from others who understand how scary and painful this illness is.
Yes, it is scary, and your inner strength is really tested by how quickly a pretty decent day, filled with cautious optimism, can end up with so much pain that I am digging through my meds, trying to find something to help! One thing that this forum has shown me in the short time I’ve been a member is that we’re all fighting the same battle.
I am 61, and had done all the right things to prepare for an excellent old age until this neuropathy hit me. I won’t bore you with all the things I’ve given up. My diagnosis is length-dependent small fiber neuropathy, most like genetic, as my sister has the same symptoms.
Because I am an RN, the best thing for me has been to keep all my medical records, and note any trends. Most importantly for me is having gained the trust of my physicians to tailor my daily meds to my needs. I see a pain doctor, and take a small dose of Percocet, 7.5 mg 1/2 tab four times daily as needed. Baclofen ( muscle relaxant) has become more useful. Gabapentin made me too drowsy. Lyrica helped but I lost my intelligence! I’m now on Tegretol, and I think it will work, once we get the dose worked out. I’m willing to try any cream, supplement, patch, socks, etc and that is how I’ve found what works for me.
My life is pretty good. Most people don’t realize I have this “invisible illness”. Doctors are still learning about it. My physical therapist is learning along with me. It definitely forces you to learn your own inner strength, but there are medications out there to ease your suffering!
I posted here somewhere else before, just updating....
I have neuropathy in the feet: strictly numbness, no tingling or other.
It started all of a sudden in the left foot, 3 years ago.
Detail: it did not start in the toes, it started in the whole front of the foot (mid point forward) all at once.
A year later it moved to the right foot.
It is gradually getting worse in both feet.
B12 is low but I take shots for it.
Fasting glucose is in low 100s, so a bit high, but A1C is always fine.
No alcohol, smoking or drugs.
I do have an issue in my lower back, but people looking at MRI do not thing that is an issue.
I had a doctor do a spinal epidural anyways -- he used anesthetic not cortisone (he was reluctant on the cortisone) which had no effect at all. Maybe try cortisone?
Been to 2 neurologists, both conclude unknown cause.
PT I went to thinks it is the back, because one visit he worked on my back and it made it better -- but in other visits, the same work had no effect, so inconclusive.
My regular doctor says circulation is fine.
If it matters, I have that thing where if I bend my elbow for a while, my hand goes numb.
But permanent numbness is only in the feet.
Only drug I take is lisinopril for high blood pressure (which is not very high)
I was put in a statin a year before this started -- which makes me wonder, as I know that can be a cause? -- but I stopped back then because cardiologist said I don't need it.
I walk 2 hours a day, love walking.
I can live with it, but worry it will get worse.
Not sure what else to do.
What happened to you has happened to me and it's as if I wrote your post. My neuropathy is from Lyme disease. My Lyme doctor has 1,200 patients and 80% have neurological issues. I'm doing 3 antibiotics a day and IVIG and seeing a little improvement.
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I posted here somewhere else before, just updating....
I have neuropathy in the feet: strictly numbness, no tingling or other.
It started all of a sudden in the left foot, 3 years ago.
Detail: it did not start in the toes, it started in the whole front of the foot (mid point forward) all at once.
A year later it moved to the right foot.
It is gradually getting worse in both feet.
B12 is low but I take shots for it.
Fasting glucose is in low 100s, so a bit high, but A1C is always fine.
No alcohol, smoking or drugs.
I do have an issue in my lower back, but people looking at MRI do not thing that is an issue.
I had a doctor do a spinal epidural anyways -- he used anesthetic not cortisone (he was reluctant on the cortisone) which had no effect at all. Maybe try cortisone?
Been to 2 neurologists, both conclude unknown cause.
PT I went to thinks it is the back, because one visit he worked on my back and it made it better -- but in other visits, the same work had no effect, so inconclusive.
My regular doctor says circulation is fine.
If it matters, I have that thing where if I bend my elbow for a while, my hand goes numb.
But permanent numbness is only in the feet.
Only drug I take is lisinopril for high blood pressure (which is not very high)
I was put in a statin a year before this started -- which makes me wonder, as I know that can be a cause? -- but I stopped back then because cardiologist said I don't need it.
I walk 2 hours a day, love walking.
I can live with it, but worry it will get worse.
Not sure what else to do.
-
Like -
Helpful -
Hug
4 ReactionsHi @rickhood, If you ever want to find an older comment you posted, just click on your member name to go your profile and settings. Then click Comments at the left and you will see your most recent post at the top. You can also get to your profile and settings by clicking the profile icon at the top right corner of the screen.
Walking is good and something I wished I was able to do more. I'm not sure if you have done any research on neuropathy and things you can do to help yourself but the Foundation for Peripheral Neuropathy has some things others have found helpful here - https://www.foundationforpn.org/living-well/
-
Like -
Helpful -
Hug
3 ReactionsI just joined the forum. I was recently diagnosed with peripheral nephropathy. I was in the hospital last week the pain was so bad. They gave me a prescription for Gabapentin, that's it. Pain level is usually about 9 especially when I go to sleep.? I am using Medical Marijuana for pain, walking/exercising,eating well,and resting. I slept two 3 1/2 hour shifts last night...woke with pain in between. This is new to me. I am 70 and old age is a little different than I imagined it would be. I guess I need support from others who understand how scary and painful this illness is.
-
Like -
Helpful -
Hug
4 ReactionsHello @pacodennis, Welcome to Connect. You are not alone. I'm 79 and this neuropathy crept up on me for 20+ years. For me, it's not life threatening but it does make old age a little different than I also imagined. I posted my story in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/.
I do think acceptance is part of our journey and think you might find this older discussion somewhat helpful knowing what other members have shared on the topic.
-- Acceptance: Anyone have difficulty accepting new limitations daily?: https://connect.mayoclinic.org/discussion/acceptance/
It can be scary at times and one thing that I think is helpful is to learn as much as you can about your diagnosis and available treatments. Here are a couple of my favorite sites to learn more:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
It sounds like you already doing some of the more important things for living healthy. Have you done any research on complemenary or integrative therapies for neuropathy?
-
Like -
Helpful -
Hug
2 ReactionsI looked into pain management clinics. I still need a referral from my PCP to get a specific diagnosis which will be a couple months. I get pretty depressed at times, and need to make it till I can see the specialist.
Thank you for the helpful links!!!
-
Like -
Helpful -
Hug
1 ReactionI posted this comment also, but after much research I found a study that got good results using a combination of 300 mg of CoQ10 and 20 mg of PQQ daily. It has made a huge difference for me. Not an overnight cure, but could help prevent further progression.
-
Like -
Helpful -
Hug
1 Reaction@graysea I like your positive self talk and personal mantras. It sounds to me like you are doing a pretty good job despite some bumps in the road and will persevere.
I'm sorry you were so unlucky. Having a support system as you do with your husband and doctor are a blessing.
Here is one of my favorite mantras...
"We cannot direct the wind
But we can adjust the sails."
~ Dolly Parton
I adopted it right after graduation from the Mayo Pain Rehab Center. Mindset is everything....you got this!
-
Like -
Helpful -
Hug
4 Reactions@graysea
Yes, it is scary, and your inner strength is really tested by how quickly a pretty decent day, filled with cautious optimism, can end up with so much pain that I am digging through my meds, trying to find something to help! One thing that this forum has shown me in the short time I’ve been a member is that we’re all fighting the same battle.
I am 61, and had done all the right things to prepare for an excellent old age until this neuropathy hit me. I won’t bore you with all the things I’ve given up. My diagnosis is length-dependent small fiber neuropathy, most like genetic, as my sister has the same symptoms.
Because I am an RN, the best thing for me has been to keep all my medical records, and note any trends. Most importantly for me is having gained the trust of my physicians to tailor my daily meds to my needs. I see a pain doctor, and take a small dose of Percocet, 7.5 mg 1/2 tab four times daily as needed. Baclofen ( muscle relaxant) has become more useful. Gabapentin made me too drowsy. Lyrica helped but I lost my intelligence! I’m now on Tegretol, and I think it will work, once we get the dose worked out. I’m willing to try any cream, supplement, patch, socks, etc and that is how I’ve found what works for me.
My life is pretty good. Most people don’t realize I have this “invisible illness”. Doctors are still learning about it. My physical therapist is learning along with me. It definitely forces you to learn your own inner strength, but there are medications out there to ease your suffering!
-
Like -
Helpful -
Hug
5 ReactionsWhat happened to you has happened to me and it's as if I wrote your post. My neuropathy is from Lyme disease. My Lyme doctor has 1,200 patients and 80% have neurological issues. I'm doing 3 antibiotics a day and IVIG and seeing a little improvement.
-
Like -
Helpful -
Hug
2 Reactions