Welcome @clarkbharp, It sounds like you also have peripheral neuropathy. Can you share a little more about your diagnosis and what treatments you are using or have tried?
I have non-length dependent small fiber sensory neuropathy, which means it is from the top of my head to the soles of my feet. Sometimes i’ll have neuropathy that is in my mouth and its almost impossible to eat or brush my teeth. Because of that I have gotten yeast infections ( thrush) in my mouth. It’s hard for me to walk or put pressure on my feet in the mornings and at night.
I also have Automatic Neuropathy. It attacks nerves that you do not control. Like pupil dilation or constriction, your heart……. My top part of my heart is almost dead. I had a pacemaker put in about seven years ago and at that time they gave me five years to live. It is getting to the point where my electrical system in my heart works sporadically. It has gotten so bad there is no longer any treatment for me and I am on hospice. I have been given less than six months to live. This disease has attacked my vision, my heart, bladder and kidneys. I can hardly pee anymore and will soon have
To put a catheter in every 4 hours to pee. Once
you start using the catheter you can’t go back and I will also have to wear depends for leakage. I have been dealing with neuropathy for 15 years now. I fall, I pass out I’m on oxygen full time.
I do not have gerd but I have terrible acid reflex. About five years ago I had some seizures.
My friends who are dying of cancer feel bad for me because they have very little pain and I am always in horrible pain. This disease has to be one of the worst diseases to have. I also get autonomic storms. This is where your electrical system goes haywire and you sweat profusely you get unimaginable pain. You vomit profusely and I usually make 30 trips to the emergency room a year. I haven’t had one since being placed on clonazepam and Valium.
What terrible is my son has it and in some respects his is worse because of none stop seizures. It’s affected the electrical pathways in his brain. He is 37 and was told he will not make it to 40. He also deals with tons of blood clots and they don’t understand why this is happening. He smokes pot non stop to control his seizures. He use to love getting buzzed but now that he has to use marijuana constantly he hate it.
Does this answer your question
I have just read your story and I am so sorry you are going through so much with neuropathy. My problems with this illness seems minor now compared to what you are going through. I wish I could offer some solace in a drug that would help you but I can’t. I can only tell you that my prayers and thoughts are with you during your struggle and I am sure you hear this a lot from others but the power of prayer from so many can work miracles. All the best
Carol
I have non-length dependent small fiber sensory neuropathy, which means it is from the top of my head to the soles of my feet. Sometimes i’ll have neuropathy that is in my mouth and its almost impossible to eat or brush my teeth. Because of that I have gotten yeast infections ( thrush) in my mouth. It’s hard for me to walk or put pressure on my feet in the mornings and at night.
I also have Automatic Neuropathy. It attacks nerves that you do not control. Like pupil dilation or constriction, your heart……. My top part of my heart is almost dead. I had a pacemaker put in about seven years ago and at that time they gave me five years to live. It is getting to the point where my electrical system in my heart works sporadically. It has gotten so bad there is no longer any treatment for me and I am on hospice. I have been given less than six months to live. This disease has attacked my vision, my heart, bladder and kidneys. I can hardly pee anymore and will soon have
To put a catheter in every 4 hours to pee. Once
you start using the catheter you can’t go back and I will also have to wear depends for leakage. I have been dealing with neuropathy for 15 years now. I fall, I pass out I’m on oxygen full time.
I do not have gerd but I have terrible acid reflex. About five years ago I had some seizures.
My friends who are dying of cancer feel bad for me because they have very little pain and I am always in horrible pain. This disease has to be one of the worst diseases to have. I also get autonomic storms. This is where your electrical system goes haywire and you sweat profusely you get unimaginable pain. You vomit profusely and I usually make 30 trips to the emergency room a year. I haven’t had one since being placed on clonazepam and Valium.
What terrible is my son has it and in some respects his is worse because of none stop seizures. It’s affected the electrical pathways in his brain. He is 37 and was told he will not make it to 40. He also deals with tons of blood clots and they don’t understand why this is happening. He smokes pot non stop to control his seizures. He use to love getting buzzed but now that he has to use marijuana constantly he hate it.
Does this answer your question
@frattmaa
Wow! I thought I had it rough until I read your post! Your suffering must be unimaginable! I suffer from chemotherapy-induced peripheral neuropathy. I was diagnosed 6 years ago with mantle cell non-Hodgkins lymphoma, subsequently underwent an aggressive form of chemotherapy, and was deemed in remission 6 months later. At the time I was warned that neuropathy was an outcome I could expect from this treatment regimen. I accepted this fact not really understanding the severity of pain I would experience. Almost immediately, I began to have pain and numbness in my hands and feet. I was treated first with Neurontin, then later we tried Lyrica. Lyrica was completely ineffective for me, so Neurontin was restarted and I presently use 3,600mg daily, though over time this has been supplemented with hydrocodone. I now have to use 50mg hydrocodone daily to mitigate my pain, though I have periods of up to several days at a time where even this amount of opiod use is ineffective. I recently have been pursuing the idea of a spinal cord stimulation surgery. I have read many good things about the improvements in technology and quality of life from same. However, my pain management physician is doing everything he can to discourage me in this endeavor. He asked me to do some further research related to this procedure and the potential negative side effects of this form of pain management. I have since done so and am now of the mind to wait on this procedure. For one thing, my HMO doesn't offer the latest technology, and I also suspect the doctor who would perform the surgery has little experience in this type of surgery. I have read many real horror stories from people who have had the procedure only to want it removed for the additional pain they suffer from the spinal surgery alone. Anyway, I suspect I may not benefit and just wanted to give some perspective to my own circumstances. You, my friend, have all my sympathy and prayers for peace and rest. I will not complain so often about my own suffering after reading what you and your son are experiencing. God's blessings on you and yours!
@frattmaa
Wow! I thought I had it rough until I read your post! Your suffering must be unimaginable! I suffer from chemotherapy-induced peripheral neuropathy. I was diagnosed 6 years ago with mantle cell non-Hodgkins lymphoma, subsequently underwent an aggressive form of chemotherapy, and was deemed in remission 6 months later. At the time I was warned that neuropathy was an outcome I could expect from this treatment regimen. I accepted this fact not really understanding the severity of pain I would experience. Almost immediately, I began to have pain and numbness in my hands and feet. I was treated first with Neurontin, then later we tried Lyrica. Lyrica was completely ineffective for me, so Neurontin was restarted and I presently use 3,600mg daily, though over time this has been supplemented with hydrocodone. I now have to use 50mg hydrocodone daily to mitigate my pain, though I have periods of up to several days at a time where even this amount of opiod use is ineffective. I recently have been pursuing the idea of a spinal cord stimulation surgery. I have read many good things about the improvements in technology and quality of life from same. However, my pain management physician is doing everything he can to discourage me in this endeavor. He asked me to do some further research related to this procedure and the potential negative side effects of this form of pain management. I have since done so and am now of the mind to wait on this procedure. For one thing, my HMO doesn't offer the latest technology, and I also suspect the doctor who would perform the surgery has little experience in this type of surgery. I have read many real horror stories from people who have had the procedure only to want it removed for the additional pain they suffer from the spinal surgery alone. Anyway, I suspect I may not benefit and just wanted to give some perspective to my own circumstances. You, my friend, have all my sympathy and prayers for peace and rest. I will not complain so often about my own suffering after reading what you and your son are experiencing. God's blessings on you and yours!
Welcome @bravehelios, Sorry to hear your chemo treatment introduced you to neuropathy. There are a lot of different options that may be helpful and it's wise to learn as much as you can about your condition and available options that may provide relief from the pain.
Hi Debbie, Here's some information on the topic...
"Alpha-lipoic acid can lower blood sugar levels, so people with diabetes or low blood sugar should take alpha-lipoic acid only under the supervision of their health care provider. Animal studies suggest that people who don't get enough thiamine (vitamin B1) should not take alpha-lipoic acid." --- Alpha-lipoic acid: https://www.mountsinai.org/health-library/supplement/alpha-lipoic-acid
My neurologist just recommended 600 mg ALA daily. She told me to be patient and give this regimen a month before considering whether it helps or not. FWIW I have type 2 diabetes, albeit well controlled.
I have been dealing with back and neck problems for the past 20 years. I have had for back surgeries and 3 neck surgeries. The back surgeries have not help with the pain I get in my legs after walking 15 or 20 steps. I must stop and let me legs stop burning and hurting before I can go any further. My Neurologist says that my leg problems cannot be caused by the spinal canal narrowing of my neck. I have read on the Mayo Clinic sight that neck problems can cause pain in the legs. I really don't know what to believe. I have weakness and tremors in both shoulders and arms. Again my Neurologist says that my neck problems can't cause this problem. I would like some advice and help. Thank you for any advice and help given.
I have been dealing with back and neck problems for the past 20 years. I have had for back surgeries and 3 neck surgeries. The back surgeries have not help with the pain I get in my legs after walking 15 or 20 steps. I must stop and let me legs stop burning and hurting before I can go any further. My Neurologist says that my leg problems cannot be caused by the spinal canal narrowing of my neck. I have read on the Mayo Clinic sight that neck problems can cause pain in the legs. I really don't know what to believe. I have weakness and tremors in both shoulders and arms. Again my Neurologist says that my neck problems can't cause this problem. I would like some advice and help. Thank you for any advice and help given.
Hi @robert1551, Welcome to Connect. I'm not a doctor and have no medical training but spinal compression in the neck and spine can cause nerve pain according to many major health facilities. Here's one from John Hopkins:
Hi @robert1551, Welcome to Connect. I'm not a doctor and have no medical training but spinal compression in the neck and spine can cause nerve pain according to many major health facilities. Here's one from John Hopkins:
I would like to get into the Mayo clinic. I am afraid that it would take a long time to get an appointment. I have been reading on the Mayo clinic web site and the symptoms I am having is exactly what the web site says I should be having; C2 C3 moderate to severe right neural foraminal narrowing,
C3 C4 severe right neural foraminal narrowing also mild spinal canal narrowing,
C4 C5 moderate right and mild left neural foraminal narrowing,
C5 C6 moderate to severe left and mild right neural foraminal narrowing,
C6 C7 mild spinal canal stenosis, moderate to severe bilateral neural foraminal narrowing.
L1 l2 broad based disc bulging results in mild spinal canal and bilateral lateral recess narrowing,
L2 L3 annular disc bulging result in moderate spinal canal narrowing and severe left and moderate right lateral recess narrowing, severe left and mild right neural foraminal narrowing,
L3 L4Annular disc bulging result in mild spinal canal and moderate bilateral lateral recess narrowing, moderate right and mild left neural foraminal narrowing,
L4 L5 residual disc protrusion results in severe left lateral recess narrowing and moderate to severe bilateral neural foraminal narrowing
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lyrica made me develop incontinent issues. Now I have this problem on top of the tingling, numbing etc in my foot.
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Welcome @clarkbharp, It sounds like you also have peripheral neuropathy. Can you share a little more about your diagnosis and what treatments you are using or have tried?
I have just read your story and I am so sorry you are going through so much with neuropathy. My problems with this illness seems minor now compared to what you are going through. I wish I could offer some solace in a drug that would help you but I can’t. I can only tell you that my prayers and thoughts are with you during your struggle and I am sure you hear this a lot from others but the power of prayer from so many can work miracles. All the best
Carol
@frattmaa
Wow! I thought I had it rough until I read your post! Your suffering must be unimaginable! I suffer from chemotherapy-induced peripheral neuropathy. I was diagnosed 6 years ago with mantle cell non-Hodgkins lymphoma, subsequently underwent an aggressive form of chemotherapy, and was deemed in remission 6 months later. At the time I was warned that neuropathy was an outcome I could expect from this treatment regimen. I accepted this fact not really understanding the severity of pain I would experience. Almost immediately, I began to have pain and numbness in my hands and feet. I was treated first with Neurontin, then later we tried Lyrica. Lyrica was completely ineffective for me, so Neurontin was restarted and I presently use 3,600mg daily, though over time this has been supplemented with hydrocodone. I now have to use 50mg hydrocodone daily to mitigate my pain, though I have periods of up to several days at a time where even this amount of opiod use is ineffective. I recently have been pursuing the idea of a spinal cord stimulation surgery. I have read many good things about the improvements in technology and quality of life from same. However, my pain management physician is doing everything he can to discourage me in this endeavor. He asked me to do some further research related to this procedure and the potential negative side effects of this form of pain management. I have since done so and am now of the mind to wait on this procedure. For one thing, my HMO doesn't offer the latest technology, and I also suspect the doctor who would perform the surgery has little experience in this type of surgery. I have read many real horror stories from people who have had the procedure only to want it removed for the additional pain they suffer from the spinal surgery alone. Anyway, I suspect I may not benefit and just wanted to give some perspective to my own circumstances. You, my friend, have all my sympathy and prayers for peace and rest. I will not complain so often about my own suffering after reading what you and your son are experiencing. God's blessings on you and yours!
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1 ReactionWelcome @bravehelios, Sorry to hear your chemo treatment introduced you to neuropathy. There are a lot of different options that may be helpful and it's wise to learn as much as you can about your condition and available options that may provide relief from the pain.
You might find the Foundation for Peripheral Neuropathy helpful for learning more -- https://www.foundationforpn.org/living-well/
There is a discussion you might want to read through to learn what others have shared:
-- Chemo-related Neuropathy: https://connect.mayoclinic.org/discussion/1st-time-at-mayo-for-neuropathy/
You might also find this discussion helpful:
-- Anyone tried Spinal Cord Stimulation for Chronic Pain?: https://connect.mayoclinic.org/discussion/spinal-cord-stimulation-2/
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3 ReactionsMy neurologist just recommended 600 mg ALA daily. She told me to be patient and give this regimen a month before considering whether it helps or not. FWIW I have type 2 diabetes, albeit well controlled.
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3 ReactionsI have been dealing with back and neck problems for the past 20 years. I have had for back surgeries and 3 neck surgeries. The back surgeries have not help with the pain I get in my legs after walking 15 or 20 steps. I must stop and let me legs stop burning and hurting before I can go any further. My Neurologist says that my leg problems cannot be caused by the spinal canal narrowing of my neck. I have read on the Mayo Clinic sight that neck problems can cause pain in the legs. I really don't know what to believe. I have weakness and tremors in both shoulders and arms. Again my Neurologist says that my neck problems can't cause this problem. I would like some advice and help. Thank you for any advice and help given.
Hi @robert1551, Welcome to Connect. I'm not a doctor and have no medical training but spinal compression in the neck and spine can cause nerve pain according to many major health facilities. Here's one from John Hopkins:
"What are the symptoms of spinal cord compression? · Pain and stiffness in the neck, back, or lower back · Burning pain that spreads to the arms, buttocks, or down into the legs (sciatica)"
-- Spinal Cord Compression | Johns Hopkins Medicine: https://www.hopkinsmedicine.org/health/conditions-and-diseases/spinal-cord-compression
Have you thought about getting a second opinion or seeking help at a major teaching hospital or health facility like Mayo Clinic?
I would like to get into the Mayo clinic. I am afraid that it would take a long time to get an appointment. I have been reading on the Mayo clinic web site and the symptoms I am having is exactly what the web site says I should be having; C2 C3 moderate to severe right neural foraminal narrowing,
C3 C4 severe right neural foraminal narrowing also mild spinal canal narrowing,
C4 C5 moderate right and mild left neural foraminal narrowing,
C5 C6 moderate to severe left and mild right neural foraminal narrowing,
C6 C7 mild spinal canal stenosis, moderate to severe bilateral neural foraminal narrowing.
L1 l2 broad based disc bulging results in mild spinal canal and bilateral lateral recess narrowing,
L2 L3 annular disc bulging result in moderate spinal canal narrowing and severe left and moderate right lateral recess narrowing, severe left and mild right neural foraminal narrowing,
L3 L4Annular disc bulging result in mild spinal canal and moderate bilateral lateral recess narrowing, moderate right and mild left neural foraminal narrowing,
L4 L5 residual disc protrusion results in severe left lateral recess narrowing and moderate to severe bilateral neural foraminal narrowing