Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

@fala

Hi @bcool123
My feet are also very cold. I discovered if I use a foot warmer at night, it changes how I start and end my day with huge relief that lasts all dasy if I am inside. I wear Merino wool socks as well. There are also foot warmers you can buy to put in your shoes. Best wishes!

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We keep an electric blanket on the bottom half of our bed year round.

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@bcool123

I follow connect daily and I’m not sure where to put this question so I’ll leave it to the monitors. I have had Neuropathy for about a year and I’m on gabapentin. My symptom is not pain or burning but instead ice cold feet. I just read about a patch called Capsaicin and wonder if anyone has used it with any relief? Appreciate any feedback, Bcool in Colorado

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I tried that Capsatciin patch and it gave such a burning sensation that I had to remove it, and I have severe PN!!!!!!

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@adam365

Try kratom. It’s all natural and not addictive. Helps the pain, gives you energy and makes me be more social plus cured my depression. I have taken it for tens years.

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Is it by prescription!

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@bcool123

John and Fala. Thank you for your response to my question. I will see my doc in a week or two and ask about the Capsaicin although I doubt he will prescribe it as it sounds as if it is still being investigated. I use the neoprene socks and wool shoe inserts suggested by John earlier. I also use the hot Hand toe warmers. In the evening I use my go to Rockdove slippers and Cozy Winter large foot of the bed heating pad which I absolutely love. Fala, what kind of foot warmer are you talking about? I appreciate your responses really appreciate Connect for all of the suggestions and discussions it provides. Hope you have happy healthy holidays, Bcool

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To bcool, Thanks for asking, I had a wonderful Christmas out of State this year. I hope yours was great as well. You also asked me what kind of foot warmer i have? It is a Sunbeam. I did not measure it, but it is about 10 x 20 with two settings. I set it for 2 hours, but it can be left on. This makes a huge difference with how my feet feel in the morning, if I settle them down and warm them up at night! Best wishes!

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Peripheral Neuropathy and Alpha Lipoic Acid

My family has a history of ideopathic peripheral neuropathy ( no known cause) and I had severe symptoms in my feet 7 years ago and went to see a neurologist for the diagnosis. My family also takes statins, except me because I quit taking them and my painful symptoms went away. I feel statins caused my neuropathy because it is listed in very small print as a statin side effect. I also started a low carbohydrate diet

I moved to a new state 5 years ago and I saw an expert Neurologist at a university medical center and he recommended that I take alpha lipoic acid. I was told that it is the only supplement that has scientific evidence to help nerves regenerate. The supplement has stabilized my neuropathy and it has not progressed according to recently testing. I am happy. It also helped my brother with severe peripheral neuropathy in his feet, lower legs, and hands. He has less pain.

Talk to your neurologist to see if it may be appropriate for you.

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@salena54

Im glad it helps relieves your pain, I hate to know when someone goes through so much pain. An for the rest of you that is suffering. Ive live with pain most of my life, but not from the same illness, and I dont believe in the degree you suffer.I hope you want be afended if I tell you I will pray for you and the others who are suffering.I admire your stregth. Hang in there!

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Do you mean prayer can heal PN?

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Hi. I am new to this group. I have been diagnosed with Mantle Cell Lymphoma, Kidney disease and peripheral neuropathy.

In June, 2021 I was diagnosed with stage 3 Kidney Disease. I don't have any of the risk factors like diabetes and high blood pressure and I don't smoke or drink. All my tests done by my Nephrologist came back normal, so the cause was never determined. Even though my oncologist and nephrologist say it isn't a know side effect of Calquence (a preventive medication for my Mantle Cell Lymphoma) my kidney function started to decline when I started on this medication.

In August, 2021, I was diagnosed with peripheral neuropathy. I have slight numbness and burning in my hands and get intermittent tingling in my arms. My feet are worst than my hands. My neurologist did a electromyography test and said my muscle nerves in my feet where normal but he got zero readings from my sensory nerves in both my feet. He ordered blood work to check for certain medical conditions and so far I don't see anything of significance in the results (which I read online). However, I haven't talked to my Neurologist yet about the results. I have a feeling I will be told I have idiopathic neuropathy, meaning no known cause.

I was reading that a lot of people that have CKD (chronic kidney disease) also get neuropathy due to protein not being fully eliminated in their body.

Has anyone else been diagnosed with both CKD and neuropathy?

Thanks for any information you can give me on this.

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@johnbishop

Hi – I’ve had peripheral neuropathy in my feet and now legs for a little over 10 years. I’m probably more fortunate than most since mine is mostly numbness and tingling and no sharp pains. My doctors had me on gabapentin for awhile but it did nothing for me and when I discussed it with a new doctor team I was told gabapentin is only for pain and not numbness. I had to have an ECS and MRI before I could meet with a neurologist. The tests confirmed I have nerve damage but we still don’t know the root cause. I have an appointment for May 2nd with the neurologist and I’m hoping to find out what type of neuropathy I have which may help when talking with other people with the same type of neuropathy who have found what works for them. Two excellent sources of information are the MN Neuropathy Association (http://www.neuropathy-mn.org/) and the Foundation for Peripheral Neuropathy (https://www.foundationforpn.org/).

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Hello John, since 2015 I've been dealing with polymyalgia, giant cell arteritis, rheumatoid and osteo arthritis. That was bad enough, but now I have neuropathy. After being diagnosed a few weeks ago I joined this group and began reading a lot of posts. After working up enough courage I posted a comment of my own and you were the first to respond (for which I am very grateful since I know nothing about this condition and am very afraid) I've since found a team of neurologists who treat people with neuropathy and was feeling a little more hopeful. But from what I was reading I thought they would start me on Gabapentin since that appears to be the gold standard of treatment. However, I was sent for a lot of bloodwork, and began a series of nerve blocks. I haven't read anything on this website that speaks to this sort of treatment. Now I'm wondering if this is another blind alley since it took my going to five different specialists before anyone mentioned neuropathy. I guess my question to you is: – Is there any kind of regular treatment for this disease? Does it ever go into remission? Or is this a lifetime of pain, discomfort, anxiety and never knowing what comes next. From what I'm reading it appears as though after the original diagnosis you spend the rest of your life suffering to one degree or another and you never get back to a "Real Life."

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@anya40

Hello John, since 2015 I've been dealing with polymyalgia, giant cell arteritis, rheumatoid and osteo arthritis. That was bad enough, but now I have neuropathy. After being diagnosed a few weeks ago I joined this group and began reading a lot of posts. After working up enough courage I posted a comment of my own and you were the first to respond (for which I am very grateful since I know nothing about this condition and am very afraid) I've since found a team of neurologists who treat people with neuropathy and was feeling a little more hopeful. But from what I was reading I thought they would start me on Gabapentin since that appears to be the gold standard of treatment. However, I was sent for a lot of bloodwork, and began a series of nerve blocks. I haven't read anything on this website that speaks to this sort of treatment. Now I'm wondering if this is another blind alley since it took my going to five different specialists before anyone mentioned neuropathy. I guess my question to you is: – Is there any kind of regular treatment for this disease? Does it ever go into remission? Or is this a lifetime of pain, discomfort, anxiety and never knowing what comes next. From what I'm reading it appears as though after the original diagnosis you spend the rest of your life suffering to one degree or another and you never get back to a "Real Life."

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Sir you are pretty much correct, but try to exercise daily take lots of vitamins and try and follow a strict diet!!

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@anya40

Hello John, since 2015 I've been dealing with polymyalgia, giant cell arteritis, rheumatoid and osteo arthritis. That was bad enough, but now I have neuropathy. After being diagnosed a few weeks ago I joined this group and began reading a lot of posts. After working up enough courage I posted a comment of my own and you were the first to respond (for which I am very grateful since I know nothing about this condition and am very afraid) I've since found a team of neurologists who treat people with neuropathy and was feeling a little more hopeful. But from what I was reading I thought they would start me on Gabapentin since that appears to be the gold standard of treatment. However, I was sent for a lot of bloodwork, and began a series of nerve blocks. I haven't read anything on this website that speaks to this sort of treatment. Now I'm wondering if this is another blind alley since it took my going to five different specialists before anyone mentioned neuropathy. I guess my question to you is: – Is there any kind of regular treatment for this disease? Does it ever go into remission? Or is this a lifetime of pain, discomfort, anxiety and never knowing what comes next. From what I'm reading it appears as though after the original diagnosis you spend the rest of your life suffering to one degree or another and you never get back to a "Real Life."

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Hi Anya @anya40, So sorry to hear you also have been diagnosed with neuropathy along with the PMR, GCA and the other conditions. Neuropathy may not be an easy path for any of us but it definitely helps to learn as much as you can about the condition and the different options you have that might offer some relief of the symptoms you have with neuropathy. Here are a couple of my favorite sites for learning about neuropathy and the various different treatments and lifestyle changes you can make that will help you learn and adjust to a hopefully new normal that works for you.

— Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
— Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

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@maureenb

Hi. I am new to this group. I have been diagnosed with Mantle Cell Lymphoma, Kidney disease and peripheral neuropathy.

In June, 2021 I was diagnosed with stage 3 Kidney Disease. I don't have any of the risk factors like diabetes and high blood pressure and I don't smoke or drink. All my tests done by my Nephrologist came back normal, so the cause was never determined. Even though my oncologist and nephrologist say it isn't a know side effect of Calquence (a preventive medication for my Mantle Cell Lymphoma) my kidney function started to decline when I started on this medication.

In August, 2021, I was diagnosed with peripheral neuropathy. I have slight numbness and burning in my hands and get intermittent tingling in my arms. My feet are worst than my hands. My neurologist did a electromyography test and said my muscle nerves in my feet where normal but he got zero readings from my sensory nerves in both my feet. He ordered blood work to check for certain medical conditions and so far I don't see anything of significance in the results (which I read online). However, I haven't talked to my Neurologist yet about the results. I have a feeling I will be told I have idiopathic neuropathy, meaning no known cause.

I was reading that a lot of people that have CKD (chronic kidney disease) also get neuropathy due to protein not being fully eliminated in their body.

Has anyone else been diagnosed with both CKD and neuropathy?

Thanks for any information you can give me on this.

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Hello Maureen @maureenb, Welcome to Connect. I did a search of Connect and wasn't able to find any members who posted about chronic kidney disease and neuropathy but I have a feeling there are members that have both conditions and may be able to share their experiences with you. I was able to find a couple of references that might be helpful.

— Chronic kidney disease as a risk factor for peripheral nerve impairment in older adults: A longitudinal analysis of Health, Aging and Body Composition (Health ABC) study: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0242406
— Neurological complications in chronic kidney disease: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5102165/

Have you discussed your thoughts about protein and CKD with your doctor to see if they might have some thoughts or suggestions?

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@johnbishop

Hello Maureen @maureenb, Welcome to Connect. I did a search of Connect and wasn't able to find any members who posted about chronic kidney disease and neuropathy but I have a feeling there are members that have both conditions and may be able to share their experiences with you. I was able to find a couple of references that might be helpful.

— Chronic kidney disease as a risk factor for peripheral nerve impairment in older adults: A longitudinal analysis of Health, Aging and Body Composition (Health ABC) study: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0242406
— Neurological complications in chronic kidney disease: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5102165/

Have you discussed your thoughts about protein and CKD with your doctor to see if they might have some thoughts or suggestions?

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Thank you John for your reply and the links you posted. I will take a look at the information.

I have an appointment with my nephrologist on Feb 1st and my neurologist on Feb 4th. I will be asking them both if there is a connection between my CKD and my peripheral neuropathy. I will post if I find out anything interesting as it my be helpful to other people.

Maureen

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